I See Love

The Sounds of Reflux

2012-01-25T12:01:00.004-05:00

I know that sound. It comes, now, with every breath. It sounds like congestion, but there's no runny nose. There's no cough. It's as if something is hanging in the back of Lily's nasal passages, but no matter how much we suction or spray, we get nothing.

I know that sneeze. It is a wet, sloppy sneeze. A warning. It usually comes either while we're feeding Lily or soon after, and it means there probably will be vomiting. It is the sneeze that, when I hear it at night, I either jump out of bed and run to hers or I hold my breath and wait to see if there's any other sound that might indicate this little girl needs her mommy.

I know that cry. It is one of pain from the burning of the gastric acids oozing up her esophagus or the trauma from vomiting. Here lately, there's also been a tinge of frustration added to it, one that says, "Why does this have to happen to me, Mommy?"

And I know that silence. It comes between breaths when she sleeps, more frequently now that the reflux is back. It is always followed by three or four strong, fast breaths, those that always want to catch up from the few that were missed. It is called apnea, and it is aggravated by the reflux. It can also cause pulmonary hypertension. Not something to be taken lightly.

I know these sounds, even though I haven't heard them for over a month and a half. They echo and haunt our house, rather unnecessarily, and they burn through my soul. All of these sounds could be avoided with medicine. But our insurance company has created this process that people must go through before they will approve such medicine. To me, it's an unnecessary process because the generic (that they were willing to pay for) isn't being made anymore. It just makes sense to me that if the generic isn't being made, an option should be the brand name, especially if the doctor has requested it. Instead, Lily has been waiting over a week and a half for the brand name to be approved. And that's why all of these sounds are back.

***Lily has vomited for the past two days. This morning, it was out of both of her nostrils and running down her mouth, and she was crying and had this pained look on her face. It took every ounce of strength that I had not to take a picture of her, but after listening to her cry and watching her jerk back, I told her that if it happens again, I'm taking a picture and posting it everywhere I can think of. I'm sending it to the newspaper and the insurance company along with whatever type of letter it takes to get someone's attention. I wanted to call and scream at whoever answered the phone, "Do you hear what your process is doing to my child!?!" I'm so. very. angry. over this. To the point where I think I need prayers for peace of mind. It's just very hard when this happens to your own child.***

Lily's Medication

2012-01-22T23:33:00.004-05:00

I was asked the other day what medication Lily was on. I thought, instead of emailing the person directly, that I would post the list of her medication and some trouble that we've had with it along the way.

Miralax: Dave gives Lily this in the morning while he's getting ready to go to work. She gets 1 teaspoon mixed in 4 ounces of water. This helps with Lily's constipation.

Erythromicin: (Not sure I spelled this one correctly.) Lily gets 1 ml of this before she has her formula. Every time. We had a time with this one at the pharmacy. The generic version was on backorder at the pharmacy we go to, so I had to go downtown to the hospital pharmacy to pick up this one. Not very convenient, unless Lily had an appointment there. But now the pharmacy down the road has it, so we can get it from there. The weird thing is that the medicine we got from the pharmacy was white and didn't have to be refrigerated, nor did it expire. The medicine from the closer pharmacy is pink, has to be refrigerate, and only lasts for ten days. I think I'd rather get the medicine from the hospital pharmacy, even though time/distance-wise it's a little more inconvenient. Lily takes this because her stomach empties slowly, which can cause vomiting and reflux.

Zantac: Lily gets 2 teaspoons of this at her first feeding and her last feeding. This helps with reflux. When she first started this, she was on it for only two weeks. After we stopped all of her medicine and realized she needed to back on it all, we came back to the Zantac (generic version of it) and have stayed on it this time. Whereas last time Lily's vomiting was sporadic, this time, it's been quite under control. Lily takes this medicine for reflux.

Prevacid: UGH!!! This medicine has been the biggest headache for us! At first, Lily was on the generic solutab version of this. I'd put it in a medicine dropper, pull up water, and then put it in her g-tube. Easy enough, although one time it did clog her tube, and I had to do a tube switch here at home by myself. (Not something I'm a big fan of doing, but at least I can do it.) Now, however, the generic version does not exist. INSURANCE--one of the biggest, greediest, I'll-pretend-I'm-helping-you-while-I-really-rip-you-off entities out there--(sorry, can you tell I've been a round or two with them?)--won't approve the brand name because it just so happens to cost $200 for a thirty day supply (I was also told it costs $600, but I didn't want eyeballs to pop out.) So while I'm waiting. . .and waiting. . .on a prior authorization (which is the BIGGEST joke because why can't the insurance company see that the doctor prescribed it in the first place for a REASON!!) (Oh, we've had the same run-in with Xopenex--which isn't supposed to increase heartrate, but is more expensive, and Albuterol, which causes high heartrate (Lily's heartrate generally runs high, she doesn't need a medicine that makes it worse.) But I digress, the prior authorization hasn't been approved, so we're giving Lily over-the-counter capsules that we have to break open and give via water. Problem is, the little tiny balls get stuck in the medicine dropper and in her extension tube, so she's not completely able to get this medicine. It just bothers me because she's been doing so well, and I'm so afraid she's going to revert back to the vomiting. Lily gets this medicine once a day.

Nasonex: I'll admit that I'm bad with this medicine. I don't always give it to Lily because I just can't stand to think that she's on so much medicine. This is more for her allergies, which haven't seemed to be acting up, so I've not felt the need to give it to her. A nurse did tell me that a good way to handle it is to give it on three months, off three months: March - May and Sept. - Nov. (I think those are the months she said. Anyway, the allergy-season months.)

Poly-Vi-Sol with Iron: Not a medicine, but a vitamin. Lily's hemoglobin came back low at one of her appointments, so she was put on that. One ml once a day.

There you have it. Those are Lily's medicines. We wish she didn't have to be on so many, but if it makes her systems work, they're better for her. I know that, compared to other children with her condition, it's not a whole lot, and for that I'm thankful, but like I said, I wish she didn't have to be on any. Sorry about my bitterness with insurance. I'm grateful that we have it, no doubt, but they are out there to make a profit, and when money gets in the way of making decisions about people's health, I just have trouble accepting that. Big trouble!

Lily's on the floor going c.r.a.z.y. right now. She's so happy and rolling back and forth and beating her arms like she's playing the drums. I think she needs a little stimulation before bedtime. :)

My Dream

2012-01-19T22:05:00.001-05:00

The other day, I read this post about a little boy who recently passed away. His name is Tripp. Tripp had a condition called Junctional Epidermolysis Bullosa, where the skin forms blisters with any type of friction. It was heartbreaking to read his mother's story, to see the struggle he went through on a daily basis. What was even more heartbreaking was that when he passed away, he was two and a half years old. (In the pictures I saw, he looked to be about fourteen months old.) I cannot fathom the pain he must have gone through--the pain his mother must have gone through knowing his pain--for those two and a half years. A lifetime of pain. It still hurts my heart to think about him.

That night, though, I had a dream. Really, it seemed more like a vision because it was such an early dream, as if I had hardly had any time to fall asleep and then I woke so suddenly. I dreamed of little Tripp. His body was floating in a horizontal position, and two little flying fairy/angel type characters were wrapping strips of light cloth around him. They were happy, but not in a disrespectful way. They were gentle and . . . light. Their movements seemed to mimic a maypole fashion, one going around one way, the other going around the opposite direction, moving over and under each other. Then they stopped and looked up. I followed their gaze and saw the sky open up to this soft light. That light! It was so peaceful and comforting and warm. And it settle my heart from the breaking it felt for Tripp and his family.

MLK

2012-01-18T15:21:00.002-05:00

When we took a trip to Canada this past September, we stopped in Washington, DC. We didn't get there until probably 11:00 that night, but we drove downtown anyway. The monuments and memorials are breathtaking at night. As we were driving, I looked out the window and saw the side of one of the memorials. Immediately, I wondered if it was the Martin Luther King, Jr. memorial. We parked the car and walked down to it. Sure enough, it was. If you've never seen the MLK memorial, it is amazing, especially at night. When you first walk into the memorial, this is what you see--a large stone that has been cut in two. The piece cut out of it is a few feet away. You can see it in between the two pieces.

The next picture is the side view of the cut out piece. The quote on this side took my breath away. It says, "Out of the mountain of despair, a stone of hope." Not to diminish King at all, for I hold him in very high regards, but when I read that quote, I was holding Lily, and I couldn't help but think how appropriate that quote was to her. She is my stone of hope that came out of such a mountain of despair. Dave tried to get a picture of Lily standing underneath that quote, but I was in the picture (not one to share after a ten hour drive!) and the quote was broken up.

The next picture is the front view of that cut up piece. Not what you expected? Not what I expected. But I think it is a beautifully captivating statue. That's Dave with Gabriel and Soleil in the picture.

I just had to share this picture. I love the way the Washington Monument points in the background.

I cannot help but admire those who have stood in the face of adversity to fight for the dignity of others. MLK. Gandhi. Mother Teresa. Mandela. So heroic. More than I will ever be. But there is this little girl who calls me to fight for her dignity and the dignity of others who face the same adversity. I do it on a daily basis. My work is much more quietly done than the work of these heroes, but that doesn't phase her one single bit. What's important is that she knows my love for her drives me.

I will never have a statue made out of my image. Millions of people will never visit my grave. Books about me will never sit on bookstore shelves. But I will forever be etched into Lily's heart, and that is enough for me.

All Systems Working

2012-01-15T21:11:00.002-05:00

Maybe I should knock on wood. Lily has been doing so well lately. It's as if all systems are finally working together the way they should be working for her little body.

I guess it was around Thanksgiving, maybe a little after that, when the vomiting started again. Lily had been off of all of her medicine and was doing fine, and then one day it all started back. As always, it also brought on the frustration.

When there's vomiting, I dread leaving the house. One day, we were in the car--this was probably a good 30 minutes after she had eaten--and she vomited while we were driving down the road. Another day, I had to pick Gabriel up from school so he could go sing carols at a nursing home, and one of the teachers looked in the car to say hey to Lily and Soleil and told me that Lily had thrown up. I don't even know when that happened. It could have been while I was loading up the car; it could have been while I was waiting outside for Gabriel. Needless to say, I had to ask other moms who were at the nursing home if they would take Gabriel in for me. It makes me a nervous wreck! I've joked and said that maybe my calling is to be someone who puts together carseats. (I've taken Lily's apart enough times to wash it, that I could do it with my eyes shut!)

Anyway, after talking to the GI, we discovered that sometimes coming off of the medicine causes a lag in the symptoms the medicine is preventing. Hence, Lily not vomiting after we took her off it when she had that terrible cold some time ago.

I guess I should also add that at the time, we had just begun slowly starting Lily on a higher calorie formula. I started by just giving her 1 ounce mixed with the old formula once a day until I built her up to 1 ounce mixed with the old formula at each feeding. We are now doing two ounces of the new formula and 1 ounce of the old at each feeding. Because this formula is thicker, it is difficult for children, like Lily, who have motility issues to tolerate. So here's another reason the vomiting was probably occurring.

But the doctor told us to give the medicine a week to get in her system, and almost as if she had a crystal ball, the doctor was dead-on. A week went by, and the vomiting stopped! Since then, and it's been at least a month, Lily has vomited twice: one time when Dave fed her while she was still asleep in bed, and just the other day when I decided to give her her water while she was asleep. For that, I can't complain, and getting out is a whole lot less frustrating!

I called this post "All Systems Working" because it seems like, for Lily, her body's systems need to work a certain way. It's not just about making sure that her formula is moving through her at an adequate pace (motility). It's about making sure that she's had, preferably, two bowel movements per day and that they're a certain consistency. It's about making sure that there's no reflux--not just so her esophagus doesn't get damaged, but also because reflux can aggravate the sinuses, which, for Lily, can also cause gagging if the mucus is too thick in the back of her throat, which then will definitely cause the vomiting. It's making sure there's no UTI, because UTI's can cause vomiting. (And yes, we did check for UTI when the vomiting started back.) And it is about making sure that we give enough time in between feeds and water so what she's had has had enough time to move through.

All small pieces of a puzzle that cooperate one day and connect and then pull themselves apart when we're least expecting it and decide not to fit the next day. The picture is constantly changing.

As is Lily. While the scale isn't showing much weight gain, her little head is plumping up ever so slightly, and her legs are beginning to feel thicker. She feels different when I pick her up, so hopefully this new formula is working. She was such a skinny, little thing!

She continues to amaze her therapists and us. Each day we practice sitting with a "pretty back" (not bent over with her muscle bump sticking out), and each day she sits for longer periods of time and will even play with toys with both hands while sitting. She's enjoying the riding toys she and Soleil got for Christmas. She is taking tastes of strawberry yogurt and strawberry pudding and peach yogurt--something unheard of in the past! She's taking steps with less assistance, and she's doing a great job grasping things like the handles on the riding toys. It's a joy watching her determination and how she enjoys life. She inspires me--yes, this little girl with her developmental delays and her mental deficiencies--she inspires me, in so many ways, to be better at so many things. There aren't too many "normal" people out there who have the ability to do that. What a wonderful little girl!

My Sunshine

2012-01-08T23:05:00.001-05:00

You are my sunshine

My only sunshine

You make me happy

When skies are gray

You'll never know dear

How much I love you


Please don't take my sunshine away. Yesterday was Soleil's first birthday. It was a beautiful day to celebrate with family and friends. It's so hard to believe that a year has gone by so quickly. Here are a few more pictures: Lily and Rani Gabriel helped Soleil open her presents. I stayed up until 2:30 in the morning making Soleil's cake. Dave stayed up with me and helped me roll the balls.

Little Sister

2012-01-04T16:54:00.003-05:00

Here's a video of Soleil pushing Lily on the zebra scooter that Soleil got for Christmas. Lily loves riding on it!

December

2012-01-01T22:40:00.000-05:00

December has come and gone, and with it, many intentions to write post after post. Unfortunately, there just isn't much time. I wanted to write about our month and how we celebrate Christmas the whole month of December with Gabriel opening little advent boxes to find out what the activity for the day was going to be. How we made birdseed pinecones for the birds and camped out overnight with friends at the county park, visiting the light display the park has. Breakfast with Santa, cookie baking, movies, a nursing home visit, hot chocolate with marshmellows. . .we were very busy!

And then I got the shocking email that our little friend, Lilly (see Pray for Lilly in the right bar), passed away, and a day later, I saw a Facebook post that little Julia (the little girl we visited on our way back from Canada--see Dancing in the Rain in the right bar) also passed away. It was a very emotional time. The Sunday of that week, Dave and I decided to head up to North Carolina with the kids to Lilly's viewing. It was nice to meet Lilly's family in person and support them--yet another part of my Trisomy family. And I wanted to write about it, to try and, once again, make sense of all of the emotions that soar for these families, ashamed of the fear that erupts for my own little girl while watching the pure gracefulness that these mothers have in the face of death, their trust in Our Heavenly Father, and their faith.

Among all of this, we were also dealing with Lily vomiting again. We're thinking that a slight change in formula coupled with no reflux and motility medicine aggravated this. So Lily went back on all of her meds, a week passed, and we didn't see any vomiting until yesterday morning.

Right before Christmas, we visited my hometown and all the family who lives there. It was nice to spend that time there, but being out of town turns schedules upside down, and for some reason, Lily just wasn't liking her oxygen cannula. She cried any time we tried to lay her down to go to sleep. I thought it might be because she was without her humidifier. Dave thought she might be afraid of the dark in a house that isn't hers. We both figured it would resolve once we got home, but both Christmas Eve night and Christmas night, she continued crying when we laid her in bed. Thinking it had something to do with the humidifier, I checked it on her oxygen concentrator and found that it wasn't working, so I adjusted the tubing. It worked and Lily stopped crying. . .for about five minutes. Then she started back, so I looked at the water trap that connects the tubing to her cannula tube. The room was mostly dark, so I'm guessing that when I checked the connection, I tilted the tubing, not knowing that it had water in it. I heard a strange sound coming from her cannula and jumped up to take it off, only to find that water was spraying out of it! That meant that it was going in her nose and she could have been breathing it in!! She was crying, so Dave was trying to console her. Then she was coughing and gagging and throwing up this bubbly gunk. It concerned me because I had heard a few summers ago about this little boy who passed away due to dry drowning (I think that's what it was called)--where he went under water but then came back up and went home, only to not wake up after going to bed. I've heard that you can drown in a tablespoon of water, and was so worried that maybe Lily had aspirated on that water. Then all of a sudden, Lily fell asleep and her nose turned blue! I was so worried that she had, so Dave took her to the emergency room. Luckily, an x-ray confirmed that all was ok, and Lily got to come home. And so ended our Christmas. Not exactly the way I envisioned, but I'm certainly glad that it wasn't worse.

With Christmas over, we were able to relax a little and watch the kids play with their toys, and Dave even got our garage cleaned out and organized. I wish I could say the house was the same way.

And now the New Year is here. It's hard to believe that it's been almost a year since Soleil was born. Life is busy, but I'm thoroughly enjoying my precious children (well, to be honest, I'm not enjoying this weaning process with Soleil) and watching their development. Gabriel is so smart and is beginning to pick up on the nuances of our language (he told Dave the other day, "You're killing me, Daddy." and said it in the appropriate (and fun-loving) context); Soleil is cruising everywhere and being highly selective with her food; and Lily is getting that much-needed back strength and taking steps with Soleil's little push toy (with assistance) and playing with her toys. And I am so fortunate to have Dave as my husband. He is so thoughtful and hard-working, inspiring and loving. It's also been nice seeing Rani and Autumn grow into the young women they've become. What blessings!

I wish you all a Happy New Year and hope that your holiday season was filled with wonderful blessings and time with friends and family.

Gabriel with our advent boxes


Lily and Dave making birdseed pinecones

Lily working on her straight back

Breakfast with Santa. It's ridiculously hard to get all three children to look at the camera at the same time.

My little contortionist. Yes, that's Lily! She just started putting her toes in her mouth!

Gabriel ice skating. One of our advent activities.

Lily and Soleil in the bike trailer. It was a beautiful day!

Lily and Autumn on our camping trip. Autumn had Lily laughing!

Dave, Autumn, and Soleil on our camping trip

Gabriel and his friend Connor on our camping trip

Gabriel on our camping trip

Lily at the parade

Soleil at the parade. Autumn is holding her.


Gabriel and his friends Connor and Cole at the parade


Gabriel and I sword fighting in Toys R Us

Inspiring Story

2011-11-28T22:57:00.001-05:00

One of Lily's therapies involves Orientation and Mobility from the School for the Deaf and Blind. No, Lily's not deaf, and she's not blind, but (I believe) a small optic nerve qualifies her for those services. Lily's therapist, Ms. Alicia, is amazing. She's one of the most bubbly, life-loving people you'll ever meet.

Interacting with Alicia, you'd never know that the past two years have been quite difficult for her and her family. Her husband, Dave, was diagnosed with a rare lung cancer about two years ago, and it's been fight after fight after fight for him. But he's not given up.

I know life is not easy for Alicia, but she is such an inspiration. She has an incredible attitude, and her hope, along with her faith, is remarkable, especially given the situations she and her family have been in, including (but certainly not limited to) life support/ECMO.

I don't know Dave, but to hear his story and to see how determined and strong he is is also inspiring. I've honestly never seen anyone go through as much as he has and still have such a positive attitude and put up such a fight.

Today, their story came out in the newspaper. If you'd like to read about this incredible family, here's the link: http://www.postandcourier.com/news/2011/nov/28/a-brave-face/ And if you'd like to read more of their story, you can find it at http://www.caringbridge.org/visit/davidpugh76. It's a phenomenal story. It gives hope and exemplifies triumph.

How fortunate I am to know Alicia. She inspires me with her positive attitude, her hope, and her faith. I could always use more of that.

So Much To Be Thankful For

2011-11-27T22:38:00.001-05:00

I read a quote the other day that I really liked: Gratitude turns what we have into enough.

Although there are times when I wish I could have this or that, most of the time, I'm happy with what I have. It is enough. So many of my experiences have taught me that.

After I had finally graduated from college and moved from a one-bedroom house with two children under the age of two where I had to sit on the bathroom floor while I studied, it made me realize that I can do hard things, I can accomplish much, and there's nothing wrong with sacrificing "things."

When I went to South Africa and worked in a village where houses were made of dung, it made me appreciate the things that I had and the house that I lived in, even though it wasn't the house I truly wanted.

When I look at how far Lily has come, how happy she is, how fortunate I am to be able to stay home with her and Soleil (and even Gabriel, when he wasn't in school), it's worth not being able to get the things that I want.

I am truly thankful for all of those experiences. They have helped open my eyes to what is truly enough in my life--my family, my friends, the love I feel that surrounds me that comes from them, my God who is with me through it all--despite how difficult it has been. I've come to realize that it's never been the presence of "things" that have made my life worthwhile. It's actually been the absence of them, and having to make the best out of life with what I do have.

And while Dave and I are certainly thankful for the "things" that we do have, there are so many more important reasons to be thankful:

We have five great children!
We have great parents!
We have great friends!
We attend a great church!
We have a great community of Trisomy 18 families and have had the ability to meet some of them.
We have a roof over our heads.
Dave has a job, and with that job, we are able to afford what we need and even a few things we want.
We have been blessed by gifts from secret friends. There have been many times when these gifts were sent at the perfect time when money was quite tight. (We have a friend in California who continues to send us a gift pretty regularly. Thank you, my friend!)
We have had over two and a half years with our little Lily who continues to amaze us with her accomplishments and her determination. She is able to get herself into a partial crawling position and starting to taste food again.
We have had great doctors and nurses who have helped us care for Lily.
We live in a country where freedom is guaranteed and children with disabilities are supported.

My list could go on and on. If you read between the lines of this list, you would see that it's not been all that easy. But we know it could be worse, and knowing that has filled our hearts with an immense gratitude for what we do have. And that is enough.

Lily's New Diet

2011-11-16T22:57:00.001-05:00

The one thing that has always bugged me about Lily's g-tube is that it's just so. . .unnatural. Sure, the button itself is obviously unnatural, but the formula that she gets is what bothers me the most. I know it's developed to meet Lily's nutrition needs, but when funky ingredients that sound alien litter the ingredient list, I cringe. Plus, it kills me that Lily has no idea what she's missing when it comes to eating the good stuff like peaches and strawberries and cantaloupe.

For the past year, I've been wanting to try a more natural diet with Lily. Her nutritionist gave me information on what is called a blenderized diet. I did some research, and then put it all aside because I wanted to read the book Homemade Blended Formula Handbook before venturing out onto this road less traveled. But I kept putting off buying the book because it seemed rather expensive, and I didn't know if it had the information I was looking for.

I had read a post from the mom of Lilly, a little T-18 friend of Lily's, and how she was starting Lilly on a homemade blended formula diet. We exchanged a few emails, and I must say. . .I was inspired to get moving! So instead of purchasing the book, I decided to get it via interlibrary loan at our local library.

One of the supplies I kept hearing we'd need for this type of diet is the Vitamix blender. My mom works at a restaurant supply company, and she was able to get us one for free! It's quite an expensive blender, so that helped a lot; however, I hear that the company that makes the Vitamix offers a discount to families with children who have special feeding needs. This blender will come in very handy once we get to the point where we're blending Lily's food.

But, finally, I've taken that step and started the process. We're taking it very slowly: week one consisted of one tablespoon of Stage 1 baby food applesauce mixed with her morning feeding. We're in week two, and Lily is now getting two tablespoons throughout the day--one in her morning feeding and one in her 4:30 feeding. She's tolerating it very well. Next week, we'll move on to squash probably.

I've read wonderful things about this diet, and I hope that I can be yet another one to add positive comments about it. Since Lily nursed for about 13 months, she's not been solely formula fed. Still, I do worry a little whether or not this new diet will shock her system. But I'm recording a lot of information--feeds, calories, weight, how she's tolerating, how much she's going to the bathroom, etc.--and watching her closely.

Since she's been on this new diet, Lily has not vomited, and she's not been on any of her medication, including the erythromycin (spell check!!!) for motility. I can't necessarily credit the diet, though. When Lily was sick a few weeks ago, the doctor put her on a steroid and an antibiotic. I'm wondering if the steroid reduced some swelling that might have contributed to the vomiting in some way. We may go back to the Miralax--Lily did have a bowel movement FOUR times today, but they weren't the consistency I like to see--but we're first going to try to increase her liquids before going back to that. I may even try a little prune juice and see how that works.

As for physical improvements, Lily was down to 18 pounds, 8 ounces (with clothes) when she was sick. That was on 10/28. Last night we weighed her (without clothes), and she was up to 20.5 pounds. Keeping that food down really helps! Her hair seems to be growing, and she's now trying to get into a crawling position. She's just having trouble straightening out her arms. She's getting her behind off the floor, though. Maybe all of that is coincidental. Only time will tell.

I'm excited about this diet, though. I can't wait to introduce peaches and strawberries and cantaloupe to Lily one day. Like I said, we're taking this very slowly, but one day, she'll get a chance to have in her belly things I have no trouble pronouncing. It sounds healthier that way.

Two Visits

2011-11-13T22:10:00.001-05:00

I'm ashamed that this is such a late post. . .

Since Dave's school is now on a year-round schedule, the end of September brought our first long break. Two weeks! We decided to take a trip up to Canada to see some of Dave's family. We stopped in DC on the way up to take an overnight break from the long drive and, as we do any time we travel, we thought about contacting a few friends we've made on this Trisomy 18 journey.

I've created a map (not been great on following through with it) that shows where children with Trisomy 18 live. I made it for this reason: so we could have a visual of where these children and their families live. In the event we were traveling, we could contact these parents and see about meeting up.

Looking at the map, I was thrilled to see that my friend Sara, Alice's mom, lived close enough to the interstate we would be taking to get to Canada from DC. I called and arranged to meet her. Even though I wanted to do this more than anything, this was hard to do. Alice passed away in May, and I didn't know how Sara would feel about seeing us. The whole way there, I kept thinking how much I wished we had taken this trip a year prior. It broke my heart knowing that we were too late. I miss Alice and wish more than anything that she and Lily could have met each other. Visiting Sara was such an honor, and as it always is when we meet Trisomy 18 parents, so good for my heart.

On the way home from Canada, we stopped in DC again for a break, and this time, we were able to meet Jenny and her daughter, Julia. Julia had just turned 10 months, and to see her sweet, little self took me back to when Lily was such a tiny thing. And Julia is such a fighter! Jenny, Dave, and I shared our journeys while Gabriel and Jenny's son, Isaac, played, and again, it was such an honor. Such a lovely family! It was another visit so good for my heart.

Two journeys. Too different, yet the same. How thankful am I that we were able to stop and take the time to visit on this Trisomy 18 journey. I just wish we had been able to do it a little sooner.

Marriage Refreshed

2011-11-03T13:48:00.000-04:00

The other night, Dave and I went to see Josh Groban in concert. It was a birthday/anniversary gift that he got me back in April. Quite extravagant, if you ask me, but it was so worth it!

I know I'm biased here, but I think Dave and I are a pretty cool couple. We're good for each other. We fit. It's something I used to think about and have so much pride in a good bit, but lately, that's fallen behind Lily and her needs, and Gabriel and his needs, and Soleil and her needs. . .and Rani and Autumn's needs, too (even though they are quite self-sufficient these days). And I hadn't given the "coolness" of our relationship that much thought. It's not that our marriage was struggling. Maybe we were just falling into the rut of routine.

I remember as if it were yesterday, when Dave and I were dating. I was a big Josh Groban fan, and he had a song that he sang in Spanish. Dave knew Spanish a whole lot better than I, and so I asked him if he could translate this song. I can still hear Dave's voice as he translated. . .

There's a special meaning to Josh Groban now, because of that night, and it's all about Dave.

So we're at the concert, and Josh begins singing. And it was all I could do to keep myself from crying like a baby. Then the second song, same thing. And the third song! Nevermind that his voice is like honey. Nevermind that his songs are sadly yet sweetly romantic. It was all about realizing just how much I had been focusing on everything else and how little I had been focusing on us--Dave and me.

It's easy to do when you have kids and a busy lifestyle. It's even easier to do when you have a child with a disability. I read somewhere that up to 80% of marriages where a special needs child is involved end in divorce.

I can see how. There's that much more to deal with: more worry, more stress, more lack of sleep, more frustration. Just more, more, more. And you begin taking things for granted just so you can merely survive. That's what I did anyway.

I'm so thankful that Dave got us the tickets to that concert. I can't say it saved a marriage--we weren't there, thank goodness--but it certainly reopened my eyes to the beauty of our marriage--that. . .coolness--and I feel refreshed and ready to take on eternity with my husband.

An Ugly Cold

2011-10-31T23:23:00.001-04:00

Lily is getting over a pretty nasty cold that ended up giving her a spot of pneumonia. This was the sickest I've ever seen her. She was just so pitiful. I took her to the doctor on Wednesday, but he sent me home without any medicine and said just keep an eye on her and come back if she gets a fever, her cough gets worse, or her vomiting gets worse. The vomiting got worse, so I took her back on Friday.

On Friday, the doctor heard wheezing and recognized that her nose was so stopped up that it was possibly causing the vomiting, so he prescribed an antibiotic and a steroid. He also was going to be on call at the pediatric emergency room on Saturday, so he suggested we take her back the next day and let him listen to her again.

Then it got crazy because Lily just couldn't keep much of her fluids in. This was a problem because the medicine was to be taken with food. And she was sleeping most of the time, so the breathing treatment wasn't working much because she wouldn't wake up and kept having apnea spells because she was sleeping. My concern was if she's not getting the oxygen in, how is the medicine getting in? Then she did this weird thing. I was feeding her and she began to vomit, but some of the formula was coming back up into the syringe, so I decided to let it flow back into her stomach. When that started going back in, it was as if a water hose was in her mouth and the formula was running (not projectile this time) out of her mouth and down her chin. I've never seen that happen before, so it concerned me.

Dave took her to see the doctor on Saturday, and he decided to give her a shot of steroid and antibiotic. They did an x-ray and found a spot of pneumonia, but they let her come home. My concern was that she might have even been dehydrated, but she was producing wet diapers, so the doctor wasn't concerned with that.

And with all of this going on, I wasn't getting too much rest. Friday night, she whined pretty much all night long and vomited three times. Plus, Soleil woke up twice wanting to eat. During the day, Lily was getting plenty of rest, but not me.

It wasn't until Sunday afternoon that she finally woke up and was her perky little self. She's been that way ever since. Still coughing a little, but no runny nose, no stuffy nose, and so far, no vomiting. Last night I woke up at 2:30 with her and gave her a little more formula because we've been gradually upping her feeds not knowing whether her little stomach has shrunk or not. Luckily, Soleil slept all night.

It's been an exhausting and frustrating couple of days and a little scary, too, but Lily's feeling a whole lot better, and it looks as if we've made it over another sick hurdle. Lily stayed in for Halloween, but we dressed her up anyway. Here are a few pictures from the evening.

Then and Now

2011-10-17T23:24:00.001-04:00

I'm amazed with how far Lily has come! She's now tolerating the oxygen, even though I still don't have the courage to tape it to her face, so it falls off in the middle of the night (don't worry, I wake up with Soleil still and put it back on her), but I think that it is giving her an extra kick. And do I mean KICK! Here are some new things Lily is doing:

Kicking a ball. OK, it's not going very far, and she's not supporting herself to do it, but if I hold her up and pick her leg up at the crook, she moves her leg to kick the ball!
WANTING to stand! Lily has always loved standing! Today, I had her standing at the couch. Then I made her sit down. Immediately, she threw her head back and went stiff. Nothing to worry about, I knew that she was just trying to make me let her stand up. So, she stood some more.
Speaking of standing. . .Lily is now standing at the couch, holding herself off of it. She has a little trouble with balance, so I make sure my hands are ready to catch her if she falls, but I'm not holding her up! Lily has SMO's that help tremendously with her balance! Unfortunately, the first pair caused bruising on the bottom of her heel. We're supposed to pick her new pair up on Wednesday. I can't wait to see the difference in her ability to stand at the couch!
The little daredevil! Today, while standing at the couch, she let go with one hand and tried to touch my face! She kept her balance, but went straight back to the couch with her hand.
If I sit on the floor and hold her under her arms, she leans into my hands, as if on crutches. She lifts one foot off of the floor and pulls it back as if she's doing a ballet move. Note: this is different from when she takes steps. When she takes steps, I'm LIFTING her a little so she doesn't have so much weight to bear. When I'm sitting on the floor holding her under her arms, I am not lifting. This is what Lily would do in the shallow water when we'd go to the waterpark during the summer, but she didn't have to worry about her weight much at all because of the water. I can't wait to share this with her PT!!!
Last night, Lily pushed herself up to where she was almost sitting up! Dave saw this and immediately got up to give her a little assistance. I'm not sure exactly how he helped her completely up, but he said it was with minimal assistance.
A few nights ago, Lily was on the floor and a ball was nearby. She reached out for the ball and was playing with it. Reaching for toys while on the floor is pretty new to Lily. This was the first time she reached out to play with a ball.
Lily likes to sit and "roll" that same ball to me.
She's trying so hard to get into a crawling position, but her arms don't have the strength she needs them to have. Still, she's lifted herself--chest and belly--off the floor a few times this week using her forearms.
Lily is playing with toys! Maybe it's more appropriate to say that she is attacking toys. OK, so it's not the "normal" way children play, but it's definitely an improvement from what Lily was doing.

All of these are very recent--since we've moved--so needless to say, we've had a few very exciting months watching Lily develop.

I'm including two videos. The first was taken about a year ago of Lily playing with her Vtech Move and Crawl ball while in her stander. In this video, she just seems so calm. Really, I think she's trying to protect her face from this ball and wanting to put her mouth on it. In the second video, which was just the other day, she seems more aware of the ball, spinning it and trying to keep it at arms reach. By the way, she finally got mad at it and pushed it off of her stander. :)

And she's not the chunky little baby she was a year ago. Now she's a tall and skinny little girl, a little more than 31 inches tall. She's destined to be taller than me! (That's not saying much, though, at 5 feet even.)

If you'd like to see more videos of Lily--then and now, but mostly then--head over to YouTube. You can search those videos by typing southerngirl72j in the search box. Gosh, I just watched a few videos and. . .well, precious! It's hard remembering Lily then; I'm so caught up in Lily now. But no matter how much she's changed physically or developmentally, she's still the same sweet, pure little girl you just can't help but love.

Playing with Sounds

2011-10-12T23:12:00.001-04:00

Lily has recently begun playing with her sounds. She does it especially in the morning and at night. Never for the therapists, of course, so when she starts making her sounds, I get the camera out and begin recording.

In this video, I was trying to get her to say "ma," just hoping. . .and hoping I could catch it. . .but she's never made that sound before. Instead, she surprised me and sounded as if she was saying "Lily"! Although you can't really see it in the video, her tongue was moving the way it should when making the "l" sound. The video is about 3 1/2 minutes long, so if you don't want to watch the whole thing, fast forward to about the one minute mark. Oh, and excuse the feeding tube. I was feeding and recording at the same time. Always the multi-tasker!

She Takes My Heart

2011-09-29T12:27:00.002-04:00

She takes my heart and runs with it. I chase her. Not to get it back, I want her to have it. But to run with her, playing that frivolous childhoodgame where the wind, cool against my face, tousles my hair, and I am a giddyschoolgirl again. I feel like flying.

All the while, we sit, she and I, rocking. Cuddling. Snuggling together.

But while we sit, she takes my heart and runs with it.

Jill

The Cards I'm Dealt

2011-09-08T21:48:00.000-04:00

I've recently started a book called Redefining the Three Rs: Relax, Refocus, Recharge by Anthony D. Fredericks. It was given to me by the author when I worked in the library after he came and did a presentation for the students. It's a collection of two-page "devotional" type writings, geared towards teachers, but anyone could read it. I try to read a page a day.

Today's reading was titled "Be Grateful." A few lines struck me, especially after Tuesday's stressfulness and yesterday's calm after the storm. Fredericks says: "Life is not fair. Life is full of bumps, twists, and turns, potholes and dead ends, and other challenges along the road. Life is not about being fair. It's about what we do with the cards we are dealt."

I thought about those lines quite a bit today. I thought about how there are many days when I'm dealt a hand that I just want to fold. I keep hoping--no, I am fighting--to make that royal flush with the cards I'm dealt, but usually, I get pairs and three of a kinds. Every once in a while, I get a straight flush for a surprise. They're all winning hands, but I'm really, REALLY trying hard to make that royal flush.

The Help

2011-09-07T23:19:00.004-04:00

Yesterday was a very stressful day, and I hate to admit it, but it was one of those days where I wondered if I could really continue doing this.

Lily woke up and wasn't as cheery as she usually is, but then she perked up a little. Later, though, she was on the floor with her legs pulled up to her chest and making sounds like she just wasn't very comfortable, so I picked her up and noticed that she sounded snotty. I thought she was uncomfortable from that, so I sprayed some saline drops in her nose. I think that was a little more than she could handle because she began gagging and ultimately vomited all down my shirt. Yuk! She continued to vomit, so I just took her into the bathroom and jumped in the shower with her. She was fine in the shower and fine when I took her out, but about five minutes later, she started gagging again and that led to more vomiting. She eventually calmed down, but I noticed she sounded as if she needed to cough because her chest was a little rattly, so I gave her a breathing treatment. After the treatment, she began gagging again, so I rushed her over to the sink where she vomited some more, but this time, after vomiting, she began crying this high-pitched squeal. Basically, it was the same sound she's made before when she had a bad diaper rash and I would change her diaper. It sounded like pain, so I decided to take her to the emergency room.

It took me three times down the road (about a five minute drive from home) before I could finally get on my way because I kept thinking about things I might need at the ER. Dave was expecting me to drop off Soleil at his school, so he called wondering where I was. I basically told him that I was in such a "tizzy," and I was trying to make it but I kept going back home to get things. I was having a hard time getting it all together--literally and metaphorically.

Going to the ER is never fun. All I can wonder is what type of poking and prodding are they going to do to my little girl. It's almost like she's more of a science experiment than my Lily. And I hated that I had to be the one to take her to watch all of that. At least if Dave takes her I can be in denial.

But I also was thinking about how I didn't want to drop Soleil off at Dave's school. She won't take a bottle, so I didn't know how she would be for him. I surely didn't want to disturb his teaching. Luckily, his work is a very family friendly place, and they welcome Soleil if I ever need to drop her off. Still, it bothered me.

I wanted to call my mom for help, but she's about three hours away, so that wouldn't have done any good. And I have friends here who would gladly help at the drop of a dime, but I feel as if I rely on them so much and I don't want them to feel as if I'm taking advantage of them. It was just more than I could handle--that needing someone to rush in like Superman (or woman), yet being so trapped in my ability to call out for that help. And it weighed very heavily on my mind.

Luckily, the ER visit was mild. No blood was drawn, no oxygen insert, no science experiments. They did do an ultrasound to see if Lily had intussusception (basically where the intestines fold into themselves), but that came back negative. They said it could have happened and may not happen again, or it could. We discussed whether to cath for UTI but decided against it. So they sent us home.

When I got home, there was a package in the mail. Again, I don't know who sent it, but I feel as if there was great Divine Intervention behind it. The book, The Help, and a gift certificate to Starbucks was in that package. (NOT AT ALL what I intended to happen when I wrote the Financial Peace post! But I very humbly say, Thank you to whomever sent it.) I've yet to read the book, but I saw the movie, so I know the premise of the story, and I know it doesn't really fit my situation, but I couldn't help focusing on the title. The Help. Exactly what I needed today but just couldn't lift my voice to call out for it. And the thing is, and this helps confirm it, I have friends out there. They are giving friends, and they don't expect anything in return for that gift. They know that I am willing to help them as much and whenever there is a time that they need help. It's what friends do. And the gift certificate, well, that was someone knowing that I needed to relax after that stressful day, and what better way to do it than with a latte. (And Dave has already been willing to watch the kids as I lay on the hammock in the backyard with my book and my latte.)

Lily did have another of those vomiting/crying episodes around bedtime, but so far, they haven't come back. We're watching her closely, though.

As icing on the cake, when I opened up Facebook to my newsfeed this morning--which I rarely do anymore--I read this:

Please read--Not joking. . .God has seen YOU struggling with something. God says its over. A blessing is coming your way.

I stopped reading and thought WOW! Is God talking to me or what! I can't wait to get that blessing! I continued to read. . .

If you believe in God send this message on, please. . .

Ugh! I definitely believe in God, but it's just a "policy" of mine not to send stuff like that out--religious or not. Then I got bummed out thinking that maybe I wasn't going to receive a blessing. Then I thought positively, and decided I wasn't going to let that sentence stop me from receiving my blessing. Well, let me tell you, You don't have to forward that message!!!!! I received quite a few blessings today.

Lily kept all of her food down! No vomiting!

Lily, Soleil, and I sat outside on a blanket underneath a tree and admired one of the most beautiful blue skies I think I've ever seen. The wind blew lightly, and I got to enjoy watching my girls question what that was blowing against their skin. I was fascinated by their fascination with the way the grass felt under the blanket, and Soleil's timidness with crawling out onto the grass, yet wanting so badly to grab the leaf that was just out of reach.

I got to talk to my best friend Yvonne for a few hours, even though the girls were awake for most of that time. They behaved very well!

Our Wednesday night church service began tonight, and I met two new people (OK, so I'm not the greatest when it comes to meeting new people) and committed to a Thursday morning Bible study.

It was such a much-needed day after yesterday's struggle, and I'd say I was more than blessed!

For Caleb

2011-09-06T13:52:00.001-04:00

The sky cried today knowing her rain would never graze your face again.
The tree weeped, for who would now play in his shade.
The wind whirled, for her fingers would never tickle your skin.
And the ground soaked in the sadness and realized he would miss the steps of your feet.
How our hearts broke along with theirs.
The sun peered down and saw the sky cry, the tree weep, and the wind whirl. He saw the ground's soaked sadness and our broken hearts, and he gently said, "Given time, this too shall pass, for my rays will break through these clouds of grief with hope and healing in the dawn of a new day."

Rest in peace, little one.

Jill

Financial Peace

2011-08-27T12:43:00.005-04:00

This is the blog post that is probably going to be the hardest to post. It's easy to talk about money, just not your own. For some reason, though, I feel this calling to do this post. It's been calling me for a few months now. I've resisted, given it some thought, and finally decided to take that leap.

It's not for me. Perhaps there is a family of a T-18 baby out there who's wondering how they can cut there financial lives back to a single-income household. Maybe not. Still, I feel led to write this post.

What I am not trying to do is put myself up on a pedestal and give a financial holier-than-though attitude. This is our lifestyle. Plain and simple. I am also not using this as a way to secretly ask for money. I would rather use my talents to make money than to ask for it to be given. But we're not at that place, so please note that I am not asking for money. I'd like to add that we have had a few anonymous people send us monetary gifts. There have been times when I don't know what we would have done had these gifts not come. Other times, they have lightened our financial load. Some of these gifts have allowed me and Dave to spend a much-needed night on the town. We have tried to use the monetary gifts for purchases mainly for Lily, but sometimes we've used them for Gabriel and Soleil and things they need. Occasionally, they have been for personal items, but we try not to use them frivolously. There have also been times when our parents have helped us, but it's been more like helping with gifts or vacations. We certainly appreciate all they've done, and never intend to "mooch" off of them.

Where to begin? When we found out about Lily having T-18, both Dave and I were working. I was contributing about 52% of the income. The rush to go to a single-income household wasn't really there because we didn't know what was going to happen to Lily. I didn't want to quit my job and then something happen to her and be left at home to dwell in that sadness. On the other hand, we also didn't know how we would be able to afford it. After she was born and it was time for me to go back to work, we decided to have someone to come into our house and watch her and Gabriel. This was not an easy decision because of the scary nature of that and because it was going to cost us a lot more than what we would have paid for both Lily and Gabriel to be in daycare. But daycare was not an option.

After four months of the stress of leaving work twice a day to go home and nurse Lily, and our babysitter finding a job in the career she went to school for, Dave and I decided that we would just have to take that leap and one of us stay home. Although I made more money, it was obvious that I should be the one to do just that.

We had a little in savings and had already been working on a bill pay down plan, so we stopped contributing to an IRA that we were contributing to, paid off a bill, consolidated another bill, and consolidated Dave's student loans. We set up a new budget, too.

I don't know how we've done it. There have been many contributing factors that I can say, yes, those helped, but there have also been some very mysterious happenings that perhaps God himself had initiated to help us through all of this. Income tax checks and extra work, a little government intervention and employment payouts have helped, but still, there are some things that are unexplainable.

In the time that we've been in Charleston, basically a year, we have paid off our car, our only credit card, and my student loan. Getting rid of those debts lifted a large weight off of our financial load. We have used Dave Ramsey's model for paying off our debts, but I must admit we don't have that "gazelle intensity" that he talks about. There are times when we probably buy things that we shouldn't and contribute to a debt instead, but we are human, and we know that we cannot deprive ourselves of everything. That leads to disaster. I also am a big fan of the tv show "Til Debt Do Us Part," and try to follow some of Gail Vaz-Oxlade's suggestions.

Our budget: We use Dave Ramsey's Monthly Cash Flow Plan and Allocated Spending Plan (both of which can be printed from his website) to create our budget. We do this each month.

The first item is Charitable Gifts. I must admit that we do not give monetarily as much as I would like, but we do try to give a little of our money and a lot more of our time. I'd like to see both of those types of charitable gifts increase, for I believe in the "Pay It Forward" philosophy. Since the new school year brings a small increase in income, Dave and I have been able to increase this category a little.

Savings comes next. Right now, our savings is mainly in the form of putting money away for short-term items like taxes, car/house repairs, clothing, office supplies, gifts, and goals that we have, but those aren't really in our "savings" column. I'll talk about them later. When he started this new job, Dave decided to take a break from contributing to retirement. If we don't contribute this year, we will definitely make it a priority next year. It's not something we like holding back from, but it has helped us pay off a few bills and afford to live in a slightly better area.

Housing: We were unable to sell our house before we moved. Luckily, my brother rents it from us, but we don't make any pocket money off of it. What we make goes right back into it. Plus some. We are actually putting a little more into an equity payment attached to that house as part of our bill paydown plan. We recently bought a house, and luckily, Dave's school switching to a year-round schedule gave us a small "chunk" of money with an end-of-the-year payout. We were allowed to use that towards closing costs. Plus, we borrowed a small amount from my mom, and we'll use our tax refund to pay her back. Actually, our closing costs were a lot less than we expected, and we could have depleted our short-term savings and taken that leftover amount and paid her back, but she told us to keep in just in case we needed it and pay her back later.

Utilities: We budget $150 for electricity and $50 for water. Since we've moved, we may have to adjust that. What that means is a 79 degree thermostat (in the summer) and 67 (in the winter), which we find keeps us comfortable with our ceiling fans on, not using the dishwasher every night, turning off lights and tv's when they aren't in use, taking shorter showers, and bathing the kids together. In the winter time, I give myself permission to take one long, hot soaking bath per month. Like I said before, I can't deprive myself of everything. We have cable, which we mainly got for football season because going out to watch football is not possible with three children and it can get expensive. But we also don't go to the movies very often, and we know where to get free movies and cheap movies. We both have cell phones that have internet access, but we don't have a home phone. When we bought them, it was cheaper because we didn't have internet. Now, it's become a luxury. But it does come in handy in many ways. And we pay for internet, but that's pretty cheap for us right now.

Food: This is the one I'm proud of. I was watching The Today Show or something like it the other day, and they said the average household spent somewhere around $800 on food. Blah! We could never afford that! Our grocery budget is $290--one hundred of which goes toward our CSA for fruits and vegetables. So we budget $190 to spend at the grocery store. This includes toiletries. It's actually quite easy. . .and healthy. What we don't buy are sodas (unless we have company over), a lot of processed foods, and a lot of junk. (Read Michael Pollan's books, and you'll understand.) Our snacks usually consist of a GORP mix or popcorn and sometimes ice cream, but we've been making that ourselves lately. Occasionally, I'll buy crackers and sometimes canned fruits and vegetables, but we try to make it as fresh as possible. Meats are bought when they're on sale and we try to have leftovers. It's humiliating, but I'm being as safely transparent as possible, but we do receive WIC. We usually get a lot of meals out of the eggs, tuna, and beans, too. So, yes, it helps our grocery budget, but we usually have a little money left over, so we could probably be safe without it. It's just nice to have that "safety net." Plus, with school starting back, Gabriel doesn't eat breakfast and lunch here. Oh, and I don't use coupons.

Restaurants: We budget $50 for going out to eat. Dave's a good enough cook that eating in isn't too bad, but it's nice to have a change eating out and not have to clean up afterwards.

Transportation: We budget about $250 for gas and $70 for taxes and repairs. Dave has begun to carpool with a fellow teacher, so hopefully we'll be able to cut our gas bill.

Clothing: Ladies, don't panic! We budget $40 for clothing: $20 for me and Dave and $20 for the kids. Gabriel's school has uniforms, so he doesn't need too many clothes. I do love buying clothes for the girls, but I only buy them if they are dirt cheap. It's nice having an outlet mall near you! The last purchase I made for them was for two shirts. One was $1.74 and the other was $2.38. As for us adults, Dave doesn't feel the need for new clothing. Sometimes he has to buy something to replace a worn-out article of clothing, but I am forever on the lookout for the $5 t-shirt. Since I don't work, I don't have to have nice dress clothes. I complain about it sometimes, but really, shopping frustrates me because I have trouble finding things that fit the way I like them to fit. And sometimes I look in Goodwill, but they've gotten to be expensive, considering.

Medical: We budget $200 for medical bills and $40 for medicine. Lily is on Medicaid. That has saved our financial lives. Personally, I'm not proud of it, but she deserves it, and that's all that matters. If our bills are over $200 each month, I call and make payment arrangements. Luckily, everyone has been very accommodating. But it sure is nice when all medical bills are paid up and we don't fully spend the $200!

Personal: We have things like life insurance that I'm not accounting for in this post, but we do have those bills. We put aside $5 for office supplies (also mentioned in savings), $25 for gifts, and $16 for karate for Dave (a man's lifesaver!).

Allowance: Gabriel gets $12 for allowance, but that will go up to $16 when he turns four. He puts 5o cents in each labeled jar: savings, spending, gifts, and donations. The other dollar, he puts in the jar of his discretion. Sometimes he breaks it up; here lately, he's been giving it to himself in spending. We RARELY buy him things, including the cereal that he wants (we get cereal with WIC). When we do buy him something, it's because we would like to give it to him, not because he's screamed for it. The last toy we bought him was a housewarming gift we let him pick out when we moved. I really can't remember if we bought him a toy in between then and last Christmas, but he has bought himself a few things. The way Dave and I see it, we'd rather enrich Gabriel's life by spending time with him and taking him places than to buy him things that will never truly make him happy. Plus, he has plenty of toys that he's very happy to play with.

Extra: We allot $30 to "blow" money. This is money that we can just spend on whatever. $30 goes to entertainment that could be a restaurant but doesn't have to. $50 goes towards vacations, but we don't always put that much aside because this comes out of our bank program that puts a dollar in savings every time you make a purchase. Most of the time, we're always under budget with this one.

Student Loans: We have Dave's student loan to pay off. It's a pretty hefty sum, but we hope to have it paid off in the next four or so years.

Goals: I've already mentioned that a small part of our savings consists of goals. This money does not come from Dave's teaching income. Dave also writes grants and does part-time work on high and low ropes courses. I make pies that I sell around Thanksgiving and Christmas time and do a little cake decorating. The extra money that we make goes toward our goals. There are times when people might think that we spend this frivolously, but we don't. We've made a list of things we'd either like to buy or do, put them in order of importance, and marked them in our goals column. And if it's something to buy, we wait until we find a good deal. We bought a flat-screen tv. While that may seem frivolous, Dave had been wanting one for years, but he didn't want to pay more than $10 per inch for it. About six months ago, he found one at Sam's on their clearance rack for about $10.40 per inch, so we bought it. We bought iphones. Yes, we knew we'd have a more expensive data plan, but we got the iphones refurbished. Dave paid $20 for his; I paid $9.53 for mine. They listed for $200. Some of our goals are pretty expensive. One of mine is to go back to South Africa. I'd like to take all the kids with us, and that's going to be pretty expensive. But I want to go and meet my newly found T-18 friend Taryn and let her daughter, Mikayla, and Lily play with each other. Plus, I'd like to go back to Kruger National Park. Once we get our bills paid off and if I go back to work or start doing something from home, who knows, maybe this dream will materialize. I don't mind being patient.

Our budget, our goals--yes, they require sacrifice. Sometimes, I hate those sacrifices. But I know that they are molding me and making me more appreciative of what I have and more aware of what others don't have. That awareness spurs me to want to take action, and I take action when I can. I remember when I lived in Augusta how Chick-fil-A was about a twenty minute ride from my house, so I would only go maybe four times a year. Oh, how I love Chick-fil-A! Then they built one down the road from us, and it became a five minute drive. Rani, Autumn, and I would go every Thursday, and they would get a free kid's meal and I would get my regular value meal. After a while, I didn't appreciate Chick-fil-A so much. It kinda got boring, and I got to the point where I really didn't want it anymore. Now, we don't go to Chick-fil-A very often, so I've grown to appreciate it again.

That's how I equate our sacrifices. If I could get Starbucks every day--which I would love, love, LOVE to be able to do!--I'd do it, but I think--no, I know--I would lose the love/appreciation that I have when I get that latte. I would stop enjoying it. Getting a venti decaf vanilla latte makes my day! I think I'd like to keep it that way.

If you've made it this far, CONGRATULATIONS! I know this was a long post. I know I disclosed a lot of. . .um, personal. . .information. And I know I'm not perfect. Our budget is only a budget, and we could stand to perfect it. I hope it has given inspiration to someone out there who may be thinking about staying home with the children or even to someone who may be looking for happiness in. . .things. It's not there. I know. While living our budget is hard, and I complain about it sometimes, I am not unhappy. I am fulfilled, and in the little that we think we have (because God knows, there are a whole lot more out there who have less than we do!), I find myself. . .blessed. And I know you will too.

Prayers for Caleb and Peter

2011-08-20T17:14:00.008-04:00

Just a quick post to ask that you please pray for Caleb. He recently had surgery to remove his adenoids and had a heart attack after the surgery. There is damage to the left side of his heart and last night his cardiac enzymes were up and he had a fever. You can read Caleb's story if you look in the right column under "Caleb's Journey." While his parents haven't posted about the recent events, you can see what a precious little "Mighty Mouse" Caleb is.

There is also a little boy named Peter. He's had a lot of bleeding going on recently, and the doctors don't know where it's coming from. Yesterday, he had surgery to remove his appendix, and I just found out that he's not doing so well. Peter's mom has been such a treasure in the Trisomy 18 and fragile pregnancies worlds with her organization, Prenatal Partners for Life.

Also, if you look in the right column, you'll see that Lily has added a new friend! Her name is Julia, and you can find out more about her in her blog, "Dancing in the Rain."

Salmonella

2011-08-10T22:22:00.003-04:00

During camp, Lily went to the GI here for the first time. Her conclusion was that Lily was suffering from GERD--gastroesophageal reflux disease--and that was why Lily was vomiting. So she put Lily on both Prevacid and Zantac. Lily also was put on Miralax because the doctor believed her constipation might also be causing her to vomit. Camp came and went, and Lily's vomiting did slow down. A lot. But then we moved, and a week later, the vomiting began again.

I believe I did about twenty loads of laundry that week. Not fun. I called the GI, which is when she decided to have the stomach emptying scan done. To recap (which I think I've been doing this past paragraph and a half), Lily's stomach was found to empty slower than normal, so she put Lily on Erythromycin to help with the emptying. I also took her to the pediatrician and found out that Lily had a UTI. Ah ha! That's why the vomiting. Maybe.

Then, near the end of last week, I got a letter from DEHC, saying that they had been trying to reach me regarding a specimen that was sent over to their office from our hospital. I called them the next day (they had the wrong area code for my cell) and found out that the bacteria in Lily's urine was salmonella. DEHC was trying to reach me because they wanted to add Lily's case to their database just in case an outbreak occurred.

I'm stumped. I have no idea how Lily got this. But I'm a little grossed out, too, because I'll tell you: it doesn't just come from chickens. Fruit and vegetables, turtles, farm animals--you name it, it has it. Or so it seems. After hanging up the phone with the lady at DEHC, all I wanted to do was take a nice hot shower. Call me a freak, but I'm washing my hands like crazy! Apparently, this little bacteria shows itself by making you sick for about a week. Then, it decides to play a little trick and lie dormant in your body to fool you into thinking that it's gone away. No. It hangs around for six weeks to two months and is willing to share itself with any and every one who happens to get it on, say, their hands and then put their hands in their mouths. I've got a seven month old and a two year old who thrive on hands in their mouths! I'm wondering if that's how Lily got it. Luckily, it seemed to be a mild case because no diarrhea was involved.

But this is how it always is with Lily. The initial vomiting, I thought was the medicine not working, or Lily's body getting used to it. Then, I thought it was the UTI. Perhaps it was the bacteria. Or just. . .Lily. There's always three or four potential reasons, and no one can ever pinpoint the exact cause.

With a little Omnicef, though, things have cleared up, and I haven't seen vomiting since Thursday of last week. Well, actually, she did vomit a little today, but that's because she gagged when I had her taste Soleil's apple/cereal mix.

As for the Bi-pap. . .on Thursday, we saw the pulmonologist for the first time. This doctor is going to take over the decisions with Lily's breathing. I told the nurse practitioner who saw Lily about her reaction to the Bi-pap, and they've decided to hold off on it for a while and go back to the oxygen. Their reasoning? Lily doesn't understand what's going on. It can be scary for a two year old, period. There's no telling what's going through little Lily's mind with this. Poor thing!

So we're back to the loud, obnoxious oxygen that Lily hates. I've put off putting it on Lily while she was vomiting, and then she ended up catching the virus that Gabriel had, so I didn't put it on her for that reason. Tonight, she has no excuse, so we're giving it a try. She cried, but I gave her her favorite baby doll (which she immediately put in her mouth), and she calmed down. I hear her now, singing. I bet the cannula fell off.

I know this is a long post, but so much has happened here recently. Our friend, Susan (Rebekah's mother) had a terrible appointment with Rebekah's neurologist (you can read about it by clicking on the link for Rebekah Faith on the sidebar), so that's got me, once again, interested in the brain. More specifically, the brain in a child who's developmentally delayed. I've been reading a few books: Teaching with the Brain in Mind and Children with Mental Retardation: A Parent's Guide. Both deal with the brain.

I don't know. Maybe I'm wrong. But I know the brain is a phenomenal organ capable of things we probably will never understand. I know that Lily's little brain is not normal. I accept that. But I believe in my heart that there are things (some unknown to me) that I can do to help her achieve to her fullest potential, and regardless of what that is, it all falls back on the brain.

I could spout off a list of things to do to help the brain reach its potential, some I've done with Lily, others I probably should do. And I don't know if what I'm doing is right, but when I'm playing with her, I'm believing that what I'm doing is good for her, and (call me crazy) I'm "sending" that belief "through" me to her. She sees it in my eyes; she hears it in my voice; she feels it in my touch. And I know that she senses it because I see it in her eyes and her smile and the way her little body gets excited. My gosh, she's so proud of herself when she knows she's worked hard!

And here are some things I know: Lily knows what "dance" means. And she knows what "stand up" and "sit down" mean. She extends her head back a lot, and if I tell her to fix her head, she'll put her head down. If she's in her rocking chair, I can tell her to rock, and it might take a few times, but she'll sit herself up in that chair and move her head back and forth, and that chair starts rocking! She learned how to rock on her own! Tonight, I asked her where her daddy was, and again, it took a few times asking, but she turned her head to look right at him.

To a doctor or a scientist, it probably looks like coincidence. To me, her mother, it looks like one smart little cookie. I nursed this little girl for pretty much fourteen months, and I fully believe I have a connection with her that just knows. . .her.

Now you're probably thinking I'm really crazy, but I have an immense faith in that Invisible that is between us, making connections science will never be able to explain.

Picture for Penny :)

2011-08-05T19:51:00.000-04:00

Music to My Ears

2011-08-03T22:46:00.002-04:00

Lily has the cutest little laugh, but we have only been able to get her to laugh by tickling her. It always made me wonder if she knows what "funny" is.

Tonight, Gabriel was laughing, and To my surprise, Lily started laughing that same sweet little laugh, without having to be tickled.

It was all I could do not to cry. All of my children's laughter is music to my ears. This one, though, was such a special melody.

Survival

2011-08-02T13:14:00.005-04:00

What a surprise! Yesterday was not as difficult of a day as I expected. I won't go into any elaborate details, other than to say this:

When I got home yesterday afternoon and walked through the door, this overwhelming sense of. . .accomplishment? pride?. . .came over me. I know why it did. Because I survived the day. Mind you, I said it wasn't as difficult as I expected, but it wasn't easy either. And I survived!

Had my day been easy, I never would have had that overwhelming sense that really almost knocked me off of my feet. And this is why: at the end of the day, I celebrate difficulties. Sure, I whine about them. I'm no saint. But when it's all said and done, and I've survived (notice that I didn't say succeeded because there are some days when I'm not successful). . .Wow! What an empowering feeling!

That's just what life with a special needs child is like. It's difficult, I won't lie. But it's also so rewarding because there are days when you can sit back and breathe and realize how strong of a person you actually are because despite all of the difficulties, you survived.

As for Lily's scan results. . .

her stomach does empty more slowly than normal. The doctor has prescribed the antibiotic Erythromycin. Apparently, in small doses, it helps with motility. In two weeks, we're going to up her feeds to 5.5 ounces, something that caused vomiting every time we tried in the past. If the vomiting continues, we're going to change her formula to something that digests a little easier. And if that doesn't work, we'll be giving Lily a feed while she sleeps (something I'm hoping we won't have to do, but if it keeps the vomiting away and allows Lily to get the number of calories she needs, I'll gladly do it.) At least this is all something I can deal with.

Dread

2011-08-01T07:20:00.005-04:00

I'm afraid of today.

Lily's stomach scan is this morning. That's not what I'm afraid of. Actually, I'm hoping we'll get some answers from this.

I'm afraid because this scan could take up to four hours, and Soleil will be with us. Then, Lily has an appointment with the GI to follow up the scan.

That's at least six hours out of my comfort zone. No comfy chairs to nurse Soleil; no walls to hide behind if Lily vomits when I feed her. Nope. Just a double stroller and arms that will probably have to make sure Lily stays on her table while their holding a fidgety little baby. Probably a moment where I have to nurse an infant and tube-feed at the same time.

And I know I can do this. I've done similar countless times before. Still, I dread today.

Bi-pap Blues & Other Goings On

2011-07-29T21:43:00.003-04:00

Gosh, it's been a whirlwind of a month! Lily finished camp, we prepared for moving, I got sick, we moved, and now we're trying to get the house settled. Dave and Gabriel have started school, and I've been spoiled because Dave's parents are here helping. Sadly, they leave on Sunday.

I feel as if we've dealt with more with Lily this past month than we have her whole little two years. First, she had the unsuccessful sleep study where they decided to put her on oxygen. It made her so sad to put it on, and the tube kept falling out in the middle of the night when she turned on her side. By that time, Lily had another sleep study where they decided she needs to be on Bi-pap, so I decided to do without the oxygen for a few nights. A few nights turned into a few weeks due to paperwork. Apparently, the FDA doesn't approve Bi-pap for children as young as Lily, so extra paperwork had to be done. But one paper was looked over, so we had to wait for it to be completed and filed. On Thursday, we got the Bi-pap.

My grand dreams of Lily doing so well once more oxygen entered her little body while she sleeps have been crushed. Lily HATES the Bi-pap. It's bad! To the point where she makes herself vomit, she gets so upset. Then, the other morning, I got her out of bed to put her in her feeding chair and she stayed asleep. So I put the mask without the cap against her face. She immediately woke up and got extremely agitated. Her heartrate went up to 191! I took the mask off after about five minutes. It took her another five to calm down after I took the mask off. Then she vomited her feed. That was it for me. So now we're playing another waiting game for the doctor to call and see if he'll lower her flow rate to the lowest possible setting so we can increase it in baby steps. We're also looking for a mask that will fit her better. This mask touches her top lip and pulls it up against her teeth. The company is ordering a MiniMe, but they're saying it's bigger than the one she has. May, Vera's mom, recommended a different mask, and it looked like a good fit, but this company doesn't ship to the US.

In between all of that, Lily has been cutting teeth and had a bad diaper rash to accompany it. It's from the rash that she learned she can make herself so upset, she'll vomit. Little devil! She's been running a low grade fever since the beginning of this week, but it spiked to 102 last night. All along, I was thinking teeth, but I took her to the doctor today because of the spike, and it looks as if Lily has a UTI.

We had a pretty good time during camp with a whole lot less vomiting (even though her counselor, Lisa, had to deal with more blowouts), then we moved, and Lily started vomiting again. We're hoping it's because of the UTI. When you have a child on medicine to try to keep her from vomiting, and then she vomits, you wonder why you even bother with the medicine. Especially when you're waking up at 6:30 in the morning to give it to her. But yesterday was a vomit-free day, and today was looking good until the doctor made Lily gag on the tongue depressor. Lily's third feed was fine, and she's got one more to go. I'm really hoping for the best.

Something did dawn on me today, though, while at the doctor. They brought in a throw-up bowl when Lily was vomiting. My first thought was Why am I ruining my towels? All I need is one of these things. Maybe I'll pick up one from the store tomorrow. What took me so long to think of that one?

I've been horrible not posting, especially since I have some really cute camp pictures to share. But my goal when we moved was to not have any boxes in the house. So I didn't totally reach my goal, but I didn't do that bad of a job. Unfortunately, I'm a prioritizer, so when getting everything unpacked is one of my main priorities, it's hard to allow myself to stop and post. But I do have some really cute camp pictures to share. I'll get to it soon, I promise.

In the meantime, if you have any ideas how to get my little girl used to this Bi-pap machine, I'm listening. I can't make myself put it on her right now because I'm afraid if I leave the room she'll vomit with it on. In my mind, that risk outweighs Lily's need for oxygen.

The Culprit

2011-07-01T21:48:00.003-04:00

I'm so sorry it took me so long to give you all an update, but today has been a crazy day! Dave got home at about 4 this morning. It appears that Lily was dehydrated. After a Miralax regimen and a day at the pool (at camp) plus the vomiting that she normally does, it seems that Lily just didn't get enough liquid in. They drew blood and also did a chest x-ray, and everything was fine.

While it was all quite upsetting, perhaps God does work in mysterious ways. This morning, Lily's lips looked a little dry, so I thought I'd try to give her some water through a straw. She took some of it! Yes, Lily, who fights to keep things away from her mouth, allowed a straw, of all things, at her mouth. She even wrapped her lips around it as if in an effort to suck the water out! (That would be fantastic if we could get her to take some of her liquids through a straw!) We did send her to camp, and they gave her about an ounce of water through a syringe! Again, the fact that she allowed this is amazing! And she worked hard for her therapy. Dave took her to the doctor this afternoon, and her temp was up and she was her usual, happy self!

Thank you, thank you, thank you for the thoughts and prayers and concerns! It is so touching to know that so many people care for Lily.

ER again tonight

2011-06-30T23:53:00.001-04:00

Dave is taking Lily to the ER. She had a temp of 95.1 about two hours ago. She's been quite lethargic since she napped this afternoon and just does not want to wake up. She's not uncomfortable acting, just doesn't want to stay awake. Please say a prayer for our sweet little girl.

And by the way, I never said thank you for the prayers from earlier this week. Thank you. We appreciate every word said on Lily's behalf.

Updates and Reaching Out

2011-06-29T22:35:00.004-04:00

We had the GI appointment, and still, no answers. Lily's feeling a whole lot better, though, and her fever is gone. After her appointment, Lily had another abdominal ultrasound and then an abdominal x-ray. Then she had some labwork done.

So it's not the gall stones. The sludge is still there, but there was no evidence of inflammation. There also was no evidence of an obstruction. There was, however, evidence of constipation. And that could actually cause the vomiting if it puts pressure on Lily's stomach. Then there's the issue of possible reflux. Apparently, reflux can cause this sinus stuff that we've been dealing with for far too long. (The only reason reflux never crossed my mind was because Lily never acts like she's in pain.)

The Rx? More medicine than I think I know what to do with for the next two weeks. If this doesn't clear up, then the doctor is going to order a scan that lets them see if her stomach is emptying in a timely manner. So, for the next two weeks, we are to give her Zantac for the reflux and some other antacid type medicine, Miralax for the constipation (beginning with a high dose for the next few days to basically clean her out and then lowering it to an easier amount), and an enema to speed the cleaning out along.

What's interesting is that I've been wondering all along if Lily's vomiting had anything to do with allergies, since it began after we moved here (adding carpet and an indoor dog with the move). But after hearing the doctor today and thinking about what all has happened in the past year, it dawned on me that maybe. . .hopefully. . .Lily's vomiting has been related to constipation. Before we moved here, Lily was nursed, and we had no trouble with constipation. Right after we moved, she got her g-tube and was put on formula. Her stools changed. If only this were the answer! (But how horrible to have taken so long to figure it out. Poor Lily!) We'll see what the next few weeks bring.

Last night, I received an email from Connie, Mallorie's mom (see Our Little Teapot under Angel Friends in the right bar) asking me to help with reaching out to a mother who just adopted two special needs children from Eastern Europe (remember my post about Shaun from Reese's Rainbow?).

Actually, I'm getting ahead of myself because when I went to this mother's blog http://wronginalltherightways-travcat.blogspot.com/, the first thing I saw was this quote and I'm still getting chills from reading it: I'd like to ask God why He lets poverty and injustice exist, why there are so many orphans and why He does nothing about it, but I am afraid He would ask me the same question.

I honestly froze! I don't know if she wrote this, but this thought, that God might just ask me why I let poverty and injustice and orphans exist blows my mind. How ashamed I would be! How ashamed I am.

So immediately, I was hooked. And Connie's plea to help her reach out causes me now to share this with you.

For time's sake (and it must be short because I'm terribly tired), I'll just share this blog that gives a brief explanation of the need:
http://covenantbuilders.blogspot.com/2011/06/family-in-need.html

And this blog, written by someone else who has gone through a similar experience, gives more specifics. This mother is spearheading the movement to help Catherine. http://carringtonscourage.blogspot.com/

If you get a chance, take a look at these blogs. They are heartbreaking. They are compelling. They dare me to move.

No Camp Again

2011-06-28T20:36:00.004-04:00

Strangely, we were hoping that Lily had a UTI, but the results came back today, and no UTI. I know that sounds good, but that also means what is it?! She's vomiting, running a low grade fever, having trouble getting comfortable, and occasionally, making a moaning/whining sound. Last night, when I went to her room to feed her, she had vomited in bed a greenish colored something that looked like it had strings of blood in it. Then, as I was feeding her in bed, she vomited. I got her out of bed and rocked her in the chair, and she just made that moaning/whining sound and tossed and turned. We tried feeding her again, and she vomited again. Dave went and got some Pedialyte but only gave her about 2 ounces. Luckily, she kept that down. A few hours later, he gave her another ounce, which she kept down.

Needless to say, we decided to keep her home from camp again today.

We've been slowing down the feeds and feeding less each time. I started out with 3 ounces this morning and gave her two more a few hours later. Again, she kept that down, but when Dave fed her, she vomited. I know she's lost a little weight; she just feels so. . .small. But her demeanor was a whole lot better today. It's so frustrating to not know what's going on.

Perhaps we should have taken her to the doctor today, but she has an appointment with a new doctor, the GI, tomorrow. We were mainly to talk about the gall stones she has, but I think I'm going to move the conversation quickly over to her vomiting, especially this new episode of it.

It worries me a little, fearing that maybe Lily might be going through what her friend, Rebekah, went through. (You can read her story if you look in the right side panel at Rebekah Faith--Redefining "Incompatible with Life"--June 2, 2011.) What if we're dealing with an obstruction of some sort? I don't want to over-diagnose her (like I have the knowledge to diagnose her anyway), but I also don't want to miss out on some type of hidden opportunity.

She's sleeping soundly right now. She seems fine when she sleeps, but the little thing didn't have much of a nap today. She's probably exhausted.

We'll see what tomorrow brings. It's very hard to get in to see this GI, so luckily, the appointment came at just the right time. But if you don't mind, would you please give a quick prayer for Lily?

Camp--Days Four and Five

2011-06-27T22:33:00.003-04:00

On Thursday, the day we went to the climbing wall, Lily learned about pets. She read the book Clifford the Big Red Dog and painted red dogs. She got 15 individual standing minutes, with her counselor holding her, and 25 minutes in her stander. She made dog treats. She also had music therapy. She read a book called Cat's Colors and made a cat mask.

On Friday, the theme was Frogs and Turtles. Lily got to go swimming in the mini pool that they have at the camp. She had stander and standing minutes and made a jello snack with Swedish fish. She got to look at the K9 Care Unit from afar (since she's allergic to dogs) and got to jump around like a frog on the trampoline and read the book Jump, Frog, Jump. Again, Lily tried applesauce, but didn't really eat any. And the special treat for this day was that a pony visited the camp, and Lily got to pet it.

Lily ran a fever and didn't act like she felt well on Sunday. Dave took her to the emergency room, but they couldn't find anything wrong with her. They suspect a UTI, but Lily is so hard to cath that they tried bagging her, but didn't want Dave to have to stay there until she filled the bag, so they sent him home with bagging supplies and told him for us to bag her in the morning and send the specimen to the doctor. Needless to say, Lily didn't go to camp today--just in case the fever was virus related. Plus, she's just acting like she doesn't feel well. I don't think she would have had a good day at camp.

This week, the theme is holidays. Lily missed Easter-related activities today, but if we send her tomorrow, she'll be doing Valentine's Day-related activities. Hopefully, she'll feel better.

The Climbing Wall

2011-06-24T00:31:00.005-04:00

Today I was. . .blessed. . .to be given the opportunity to witness one of the most phenomenal sites I've ever seen. Unfortunately, it did not involve Lily--she's too young--but that's ok. She'll have her chance soon enough.

Twenty-one students from Lily's camp went to the James Island County Park climbing wall today. Since Dave knows how to belay, he offered to go and help. Gabriel, Soleil, and I tagged along.

I tell you. . .to watch these special needs children with their climbing wall gear get lifted up at least 30 feet in the air was incredible. To hear the cheers of the counselors when each child "made it to the top" was inspiring. Every time I watched a child "scale" that wall, my eyes watered and I choked back a lump in my throat. What an emotionally charged time I had!

Even talking about it to Lily's counselor brought that same water and lump back.

I now have such a profound amount of respect for the climbing wall staff for saying yes in the first place, but for also treating these special needs children with such loving dignity. But a deeper amount goes out to these kids for their willingness to get out there, try something new, and reach new heights.

Camp--Days Two and Three

2011-06-22T22:37:00.003-04:00

Lily's having a great time at camp!

Yesterday, she went horseback riding! I was envisioning Lily being held by two therapists, sitting straight up on the back of a horse. Instead, they placed her across the horse's back on her tummy. Not what I expected, but I'm not complaining. I'm glad Lily got the experience. She spent pretty much the whole day at the barn, so it wasn't a very busy day.

Today, Lily learned about insects. Again, they began the day with a morning walk. And, again, Lily spent some time in her stander. But she also had music therapy, read The Very Hungry Caterpillar, painted, decorated a flower pot, and participated in food tasting. (She tasted strawberries, pears, and apples, but Lisa, her camp counselor, said she only liked the apples.)

Both yesterday and today Lily vomited during lunch. Poor Lisa! But as fortune would have it, Lily's OT was visiting camp today and was there when it happened. She asked Lisa how fast she was feeding Lily. Lisa told her that she was giving Lily 3 ounces and then waiting 10 minutes and then giving her the rest. Brenda then asked her how quickly it was going, to which Lisa replied pretty quickly. Ah ha! We think (no, we hope!) we found the problem! It seems the slower we feed Lily, the better she holds it in. Not always so, but usually we find that's the case.

So two more good days at camp overall. Looking at all of the activities they are doing, I think I'm going to try to incorporate similar ones into Lily's day once camp is over. By then, Gabriel will be beginning school, so it'll be a little easier to do so. Besides, with Gabriel in school, I think I'm going to need a little more activity to keep me busy!

Camp Day One

2011-06-20T22:33:00.003-04:00

Thank you, Robin W., for purchasing the afghan that Dave's mom crocheted!!! That purchase is definitely going to a good cause!

Lily's first day of camp went well. She almost lasted the whole time--falling asleep for a few minutes. But, hey, she fared better than the other two year old who was there. Lily kept her happy, positive self while the other little girl got a little attitude going.

This is what Lily's camp experience was like:

Every morning begins with a morning walk. Then they have group circle time. Today, they played a name game by throwing different balls to each other during group circle time. In their reading group, they read In the Nest and made bird nests and bird feeders and a penguin potato. They played Duck, Duck Goose and Parachute. There was music therapy. They read From Head to Toe and decorated peacocks and painted with feathers. Lily stood for an hour in her stander and had OT where Lily worked on pressing buttons. What a day!

And tomorrow? Lily will have a chance to ride a horse!

Camp

2011-06-19T23:40:00.001-04:00

I've been meaning to make this post for a while, but a few things have kept me back. One being that I don't especially like to fundraise.

We were really hoping that a grant we applied for would come through for Lily's camp; however, we found out the other day that they ran out of funds long before we applied. (We didn't know that we could apply before we even knew Lily was accepted into the camp.

Dave's mom crocheted this blanket and gave it to us to sell, proceeds going to Lily's camp funds. (BTW camp costs $600. So far, we have $250 applied to the balance. Luckily, they are willing to work with us on a payment plan.)

If you would like to help with Lily's camp funds by buying this blanket--sell price is $30 plus shipping (I will email you with the shipping cost.) Please send me an email at southerngirl72j@comcast.net. I will then contact you and also put your name in my next post to verify. Once I contact you AND you see your name in my post, please send a check in the mail.

I only have one blanket, so I can only sell this to the person who offers to buy it first.

The blanket is roughly 34 inches by 38 inches. My mother-in-law is very talented with crocheting, so I hope you will find it a beautiful gift for the baby in your life. I also hope knowing that your purchase helps a good cause makes it even better. I can't wait to post what Lily does each day at camp! I think you'll find it a spectacular "investment".

A Call for Prayers

2011-06-19T00:20:00.005-04:00

The other day, I found out that Molly's (Lily's NICU nurse who has been so instrumental in Lily's life, even before she was born) 18 year old son, Tyler, was recently diagnosed with Stage 3b Hodgkins Lymphoma.

I am writing this as a call for prayers for Molly's son. Already, things are looking good, but we definitely don't want the prayers to end.

Tyler's attitude is incredible! Molly told me that he has been telling her since he was four years old that he wanted to be a doctor. After his diagnosis, he basically told her that this needed to happen to him to make him a better doctor.

Molly has had such a positive attitude for us that I can't help but feel the same way for Tyler.

I'm including this picture of Tyler and his father. Tyler had chemotherapy, and he and his dad both shaved their heads. Molly sent me this picture. It just says so much about this awesome family and the positive attitude they have!

So please, please pray for Tyler, his family, and the doctors involved in his care.

Also, little Mikayla (see Lily's Friends to the right) is in the hospital with bronchial pneumonia. Please pray for this sweet little girl that she may fight this illness and get home soon.

And while you're at it. . .Lily's friend Rebekah is still in the hospital. She had a bowel obstruction that was caused by a Meckel diverticulum and had surgery for that. Rebekah is getting slow feeds, and the doctors want her to be vomit free before she goes home. I know her family is ready for her to be home! (If you want the whole story, see Rebekah Faith under Lily's Friends.)

Thank you for the time you take in your prayers for these families. I know they all appreciate every single prayer that goes up for their precious children.

Tennessee Revisited

2011-06-14T00:19:00.007-04:00

Two years ago, when Lily was about six weeks old, we took a trip to Tennessee to Sevierville and the Smokey Mountain National Park. I can't quite explain what exactly it was, but something about that trip was magical for Lily. Maybe it was the fresh mountain air. Maybe it was the fact that here we were with a six week old child who had a death sentence on her when we probably should have been at home keeping her shielded from the world.

We didn't let that stop us.

We climbed a pretty rigorous trail; we descended a rather steep ledge to get to a smoothly flowing river and sunbathed on large rocks; we walked a part of the Appalachian Trail; we straddled two states at one time.

We didn't let Trisomy 18 stop us.

Yes, there was something magical about that trip. It was as if we were taking on the world. . .and winning.

And once again, we took that trip to Tennessee. And again, it was as if something magical was happening. We weren't as bold this time around--it's a bit harder when you have three children under the age of four--, but we did take a path up to a waterfall, and we shade-bathed by a waterhole. We saw two bears and a stampede (the Dixie one, that is), and Lily had fun exploring what her legs can do in the kiddie pool. All five days with no vomiting (until we got back into South Carolina, and she vomited in McDonald's right after we fed her).

Even this time, we didn't let Trisomy 18 stop us. It was as if we were taking on the world. . .and winning.

Pictures of Alice

2011-06-02T23:33:00.005-04:00

I have kept every email Sara and I have exchanged, and with those emails, I have pictures of Alice. Sara gave me permission tonight to share pictures of Alice with you. From one of the first pictures I received of her, to one of the last, I share with you the little girl I grew to love since my first postings of Lily.
And by the way, Sara posted a comment on my previous post to all of you who expressed your heartfelt sympathies. Thank you for being in prayer for her, especially tomorrow.

A Sad Day in the World of T-18

2011-05-31T22:37:00.007-04:00

I just found out that Alice, a little girl with T-18, passed away this morning. Her mother, Sara, was one of the first to reach out to me with Lily, and we have spent the past two years emailing each other back and forth, airing our frustrations, celebrating our joys, and sharing advice. I consider her my friend.

It was Sara who shared with me her experience with bottle feeding Alice when we were trying it out with Lily. I can remember when we went to Tennessee when Lily was about six weeks old and finding out that Alice was turning one and how I thought it was such an accomplishment. Sara and I shared many a story about vomiting and constipation and congestion and how absolutely frustrating life raising a T-18 child can be, but we seemed to be good sports about it. That's one of many things that endeared me to her. And Sara, like us, just wanted life to be as normal as possible for Alice, and that, too, endeared me to her.

My heart breaks for Sara tonight, and I come to this blog, not to dramatize, but to sort out my feelings and lift them out of my self. Oh, the fragility of life. . .

And Alice. . .such a beautiful, curly, blonde-headed little girl. She gave me such hope for Lily. Such a fighter. She would have been three on Friday.

**********************************************************

Dear, little Alice, fly high my sweet child. Kiss all of those other angels you meet tonight. You will be greatly missed.

Beets

2011-05-02T20:40:00.004-04:00

I'm loving this CSA that we are members of! (Check out our farmer's CSA here) Besides providing us with tasty, and of course, nutritious, fruits and vegetables, it seems to be providing in a different way--feeding my soul.

Last week, one of the items in our box was beets. Now, I don't know about you, but I know approximately two people who actually like beets. I'm not one of those people. I'm really not being fair, though, because I've never tasted them. That's right. Never. Yet I still will say that I don't like beets. I've actually had this fear of tasting them.

But here they were, in our CSA box. I guess, you could say, I had a few choices in how I was going to deal with these red roots. One, I could just easily throw them away, but I felt that would be a waste of our farmer's hard work. Two, I could give them away, but like I said, I only know two people who like beets, and they don't live in the Charleston area. Three, I could give the beet a chance.

I chose the third option. That meant looking online for recipes. Now here's how I feel about recipes. There are some that, no doubt, will be delicious. Others, there's definitely a risk, but hey, if someone out there says their recipe is good, it's possible that it actually might be good. You just never know. And then, there are some recipes that the first time, they actually turn out delicious, but then I try and recreate them, and well, they just aren't that good the second time around. I wondered which type of recipe I was in for.

Dealing with these beets has a similar flavor to dealing with a child who has Trisomy 18.

Can you see where my analogy is going?

I don't know that many people who actually want a child with Trisomy 18. But sometimes, just like with the beets, a person is going to get that child. That person has choices. One, throw the child away (terminate). But the way I see it, that would be a waste of The Farmer's good work. Two, give the child away (adoption). But really, how many people want a child with a disability? Three, give the child a chance.

Of course, with option number three, the parents look online, and they see that the outcome isn't guaranteed. There's definitely a risk. Some will have a child that has mosaicism, let's say, or doesn't fall on the severe side of the spectrum. Others won't be as fortunate. They will either face a miscarriage or stillbirth, or the child may not defy those grand odds. Even if the child lives, he or she may have severe problems. For those who do defy the odds, one day, everything is going well; the next, everything comes crashing down. Nothing is guaranteed.

I chose to give the beets a chance because I wanted to live adventurously. I didn't want to miss out on something that might actually be delicious. I added some juice, and Dave added some sugar. Actually, they were a sweet surprise.

I chose to keep Lily for the same reason. I wanted to live adventurously. I didn't want to miss out on something. . .delicious. . .in my life. I add lots of hope and love and patience, and Dave does the same. And occasionally, we throw in a little sugar. (Well, actually, we throw in a LOT of sugar ALL the time.)

Her life with us has been a sweet surprise.

Our Little Butterfly

2011-04-30T16:18:00.003-04:00

My dear little girl,

You truly are the wiry caterpillar who has broken through her cocoon and emerged as the beautiful butterfly. You spread your wings more and more and touch so many people who know you. You are God inspiring. We have been blessed beyond measure to have yet another year with you.

Happy Birthday, my sweet little butterfly!

Love,

Mommy

Another Year

2011-04-30T09:40:00.001-04:00

Happy birthday, Lily Grace!

A Busy Summer

2011-04-27T22:19:00.003-04:00

It seems as if little Miss Lily is going to have a busy summer this year! She will be attending a summer camp for special needs children. I'm so excited for her, but I think it's going to be hard letting her go. I've probably not been away from Lily (except for when Soleil was born) for more than five hours. And each time, she's been with either my mom or Dave's mom, or Rani or Autumn (or Mrs. Reeves, a former co-worker of mine). All good hands, for sure.

For summer camp, I'll be releasing her into the hands of a stranger. I'm not so worried about that as I am wondering Will Lily know she's not at home? Will she miss us and wonder what we're doing without her? All of Lily's therapists have recommended this place; otherwise, I would not send her to this camp.

It's like a dream come true, though. Lily will receive some type of therapy every day for five weeks! Plus, she'll get to go swimming and to the waterpark, and she'll have equestrian therapy and dance/movement classes, as well as music therapy. She'll also be exposed to equipment we don't have here at home.

Oh, how I'll miss her, though! I guess it's a good start because when she turns three, she'll be eligible for public school. We're actually hoping she'll be able to attend the school that is putting on the summer camp.

Maybe I'll try to volunteer at the camp a little throughout her time there. Of course, with Soleil nursing (and being suddenly stubborn about taking a bottle), I won't be able to stay there the entire six hours, but being there a little may cushion the blow.

Regardless of how difficult it will be for me to let go of her for those few hours, in my heart, I know it will be good for Lily. I guess, in some strange way, it will be good for me, too.

A Wonderful Weekend

2011-04-25T21:46:00.005-04:00

First of all, I would like to thank those of you who commented or emailed me regarding Lily. Your care and concerns are so appreciated!

We got the results of the abdomen scan, and Lily is Wilms tumors free! Unfortunately, it looks as if the sludge that was in her gall bladder has turned into gall stones. A referral to the GI is in place, and hopefully, we'll just be able to leave them alone, that they won't clog any ducts and have to be removed.

This weekend was such a contrast to last weekend! Dave and I have been considering going up to Chicago for the SOFT conference, but it turns out that his school will change to a year-round schedule next year, and school will begin the week before the conference. We've decided, instead, to use the money we were putting aside for the conference to go to birthday parties of children with Trisomy 18. Unfortunately, we can't go to all of them, and we're limiting our distance to a certain radius in the southeast, but still, it's the best we can do to meet with other families.

This weekend, we went to one of those birthday parties. Rebekah, who turned two last week, also lives in South Carolina. (You can read more about Rebekah at her blog. Her mom is a storehouse of information!) We didn't just see Rebekah, though. We saw Joey (2 in June) (Her blog), Dawson (5) (He has a blog, too!), and Kaylen (10), as well! It was amazing to be in the presence of that many children with T-18 and their families. So many times, I feel as though there's this disconnect between me and other people, but this weekend wasn't like that. There was this immediate connection, and it was so refreshing to hear stories and learn more about these children who have defied that horrid death sentence "incompatible with life." (I mean, hey! Kaylen is 10 years old!) Although I've heard from other moms about their child having vomiting episodes, I found out that these other children go through it too--things like that! In the flesh!

It's finding out things such as this that makes me feel less alone on this journey.

A Scary Weekend

2011-04-21T21:51:00.004-04:00

There are days when the world of Trisomy 18 weighs very heavily on my shoulders and I wonder how much more of this I can take. This week was full of those days. I was sad and worried, and that is not a good concoction.

I guess it's been in the making. Who am I fooling? It's always in the making. But what took my heart down a road it always wonders if it can handle was reading about angel Brianna's birthday. This precious little girl--oh how I have soaked a tissue over her. I went back and skimmed over some of her mother's blog posts, taking myself back to a time when this was all so new to me. I came across Brenda's post when she was told by Brianna's doctor that she probably had two weeks left with her daughter. The flood gates opened, and my heart broke again.

This breaking. Sure, it's for Brenda and Brianna, but I'd be lying if I said it wasn't for me, too. Please forgive my selfishness, but I took myself to that place where all I had was two weeks. I panicked. I mean, how do you cram a lifetime into those two weeks? Can you give all the love you planned to give? Can you lasso the clock and corral it to slow its pace? Can you create memories so deep that you will always remember a smell, a laugh, a smile?

All of this went through my mind. Then I argued with God. I can't do this. I am not strong enough. And every time these thoughts would sneak into my mind, I would, once again, hear Trust Me.

Then Lily got sick. On Thursday, I took her to the doctor, expecting a UTI. I felt confident that's what it was. She was whining a little, vomiting again, and had a strong-smelling diaper. They checked her urine, but we had to wait until Saturday for the results. Saturday came, and no UTI.

I knew something was wrong. Lily just wasn't herself. She's always smiling and rolling around and making happy noises. Here she was, frowning, very lethargic, and making this whining/moaning sound. Plus, her stool consistency had changed and had a very acidic smell to it.

I couldn't help thinking back to Brianna, and I found myself worrying. Is this the moment when everything comes crashing down? Is this when something inside of Lily begins failing? With Trisomy 18, you just never know.

This worrying made me even sadder. That two-week story kept playing in my head, and it was all I could do not to cry at any given moment.

By Monday morning, Lily seemed worse. More moaning than whining, lots of sleeping, no smiling. I texted our prayer warrior, Mama Ray, and called the doctor for another appointment. Basically, all she could come up with was a stomach virus, but she put in a request for an abdominal scan, which Lily was due for anyway, to check for Wilm's tumors. By the end of the appointment, though, it seemed as if Lily was feeling a little better, but I still didn't want to let my guard down.

But what about these Wilm's tumors? It happens that one of the symptoms of Wilm's tumors is an increased growth on one side of the body (plus general discomfort and malaise, loss of appetite, and vomiting, to name a few). It just so happens that Lily's right leg is a little longer than her left and a little thicker around than her right. Are these symptoms a sign of something we're praying Lily never has to deal with?

Her abdominal scan was today. Hopefully we'll hear back from the doctor tomorrow about the results. Being that tomorrow is Friday, I hope I won't have to wait the weekend, but if I do, Lily sees her nephrologist on Tuesday, and I'll definitely talk to him about this.

I'm happy to say, though, that Lily is back to her old self--smiling, rolling around, and making happy noises. By Monday night, she was all better.

And Mama Ray--you must be SOME prayer warrior! Thank you for your willingness to jump right on it!

A Healthier Me

2011-04-12T16:39:00.007-04:00

Dave and I recently joined a CSA (Community Supported Agriculture). This is, basically, when you pay a local farmer in advance for a season's worth of his (or her) fruits and vegetables--in our case, they are mostly organic. You get them fresh from the farm, which from what I've read, makes them healthier to eat and tastier, too.

A co-worker of Dave's picked up our first week's order, and when I reached into the bag, I pulled out a bunch of carrots. The bunch on the right is what came from our CSA. Not so pretty, huh?

What you see on the left is what we bought a few weeks ago from the grocery store. Cleaner, bigger, and more of the carrot shape that I expected.

At first, I thought, Oh, these look gross. And I kind of just wanted to throw them away. Then I thought about it and remembered that the CSA website said the vegetables might look more dirty and that this isn't a big farm we're dealing with. And I remembered that these are supposed to be healthier than what we buy in the grocery store. My what we've been conditioned to accept because if I were ONLY dealing with looks, the one of the left is the one I would choose.

Thinking about these carrots and my reaction, I started thinking about Lily and other children with chromosomal disorders. We are so conditioned to wanting the perfect child. But it is through Lily's imperfections that I have been made a better person--stronger in my character, stronger in my faith, more compassionate, etc. She has made my soul healthier because I chose to take that risk and look deeper than the surface level of her disorder.

All of this seems so selfish to me sometimes, but Lily has reached out to others and she is truly one of the happiest little girls I know. She is sweet and determined, and she LOVES life! I cannot fathom someone trying to take that away from her.

You're Invited

2011-04-05T16:38:00.005-04:00

Our Little Butterfly Is Turning Two!

If you happen to be in the Augusta area. . .

April 30, 2011
12:00 pm - 2:00 pm
email at southerngirl72j@comcast.net for location

Bring a blanket or chair and a picnic lunch, and join us for music with Chris Ndeti and her band, Mama Says. We'll provide drinks and cake. In lieu of a gift for Lily, please consider bringing a preemie outfit to be donated to the University Hospital NICU, where Lily stayed when she was born.

In case of rain. . .please stay tuned for details.

Please RSVP at southerngirl72j@comcast.net by April 25.

We look forward to sharing this special day with our special friends.

Her Superhero

2011-03-30T22:13:00.001-04:00

Please help me with this project

2011-03-28T11:17:00.003-04:00

I've been feeling a little too idle lately. (Not with the kids; they keep me busy!) But I figured out today that I just need a project to keep my brain busy. So here's what I've decided to do:

I'm creating a map as a visual reference of where T-18 babies live.

I'm trying to reach out to as many t-18 parents as possible, so if you happen to know of any, could you please tell them about this project, too?

What I need is your child's name, age, type of t-18, and city and state or country where your child lives. If you have a blog or caringbridge page, I'd also like the address.

As soon as I'm finished with this project and feel as if I have a comprehensive list, I'll gladly share this with you. You may either post in the form of a comment or email me at southerngirl72j@comcast.net.

Thank you so much for your help! Obviously, I could not do this without you!

Reece's Rainbow

2011-03-24T15:20:00.003-04:00

Dave and I have had many a conversation about the size of our family. Truthfully, we would love to have more children of our own, but with my age and because Lily has Trisomy 18, there are never any guarantees that things will go smoothly.

We speak time and time again about adoption. Dave would love more than anything to adopt a child from China, but the price is extremely high. My heart reached out, long before the earthquake, to Haitian children or children in Africa. Then we look here at home and see children in need. If only we could help them all!

After Lily was born, we even considered adopting a child with disabilities and wondered whether or not any with Trisomy 18 were out there. And yes, we know the huge emotional risks involved. And yes, they would be huge. Given the life span, we figured it would be easier to find a baby who had recently been born than to find one who was, say, six months or older. Not that age mattered. . .

A reader of my blog, Lynn, emailed me the other day and shared information about Shaun (see below) with me.

Boy, Born November 2007

This darling little boy is waiting for his forever family. He struggles with significant cleft issues and facial deformities. He also struggles with kidney problems. From his medical records, they indicate that he hasEdwards Syndrome, also known as Trisomy 18. This is quite a challenge, and most children do not survive past birth. We do not know if he has any of the other complications, but he clearly has many of the facial features and cognitive delays.

Maybe there is a super special family out there who will give Shaun a chance to really shine, and be all God intends for him to be! http://reecesrainbow.org/shaun-etkf-region-3

Shaun is almost four years old and living with Trisomy 18 in an orphanage! According to Lynn, Shaun lives in Eastern Europe and, because of his age, is in danger of being put in a mental institution where care is inadequate and mortality is high.

Doing a little more searching, I learned about the organization that sponsors him, Reece's Rainbow. This organization helps find homes (and helps cover the costs) for children, nationally and internationally, with Down Syndrome. They also reach out to children with HIV. Apparently, there are a few T-18 and T-13 children on their list as well.

Unfortunately, we're just not at a place where adoption is an option. With Soleil being so young, we would like to give her her baby years. But this is so tempting. I never realized the sheer number of children with Down Syndrome in need of adoption.

So, I reach out to you readers. Perhaps there is someone out there who hears this calling. Maybe this is the post that solidifies something you've been grappling with. I'll admit, having a child with a disability is not easy, but the joy that comes from that moment-to-moment living is exponential. And that could be yours.

Trisomy Awareness Month

2011-03-20T23:06:00.005-04:00

March is Trisomy Awareness Month. The 18th is Trisomy 18 Awareness Day. I hate to admit it, but I've not been very vocal about either of these. There's just not been a whole lot of time. If I'm not feeding, I'm changing a diaper; and if I'm not doing either of the two, I'm playing with three adorable children and trying to get a little cleaning in.

There have been, thankfully, other Trisomy mommies who have been very vocal. One Trisomy mommy, Alisha, created a photo album of children with Trisomy 18 and 13. I am so impressed with this photo album! I honestly had no idea that all of these children existed! It just further goes to show that "incompatible with life" is not an appropriate "label."

I highly recommend that you take a look at Alisha's photo album. . .and keep going back to it because she adds new ones every day.

https://www.facebook.com/album.php?aid=2106934&id=1324844228&fbid=1869236453703&ref=mf

P.S. to the following mommies (and their babies): Sara F. (Alice), Carrie (Annabel Leigh), May (Vera), Taryn (Mikayla), Alyssa's mom, Susan (Zane) and Lisa (Lilly)--I don't recall seeing your child. If you're on facebook, I'm sure Alisha would be honored to post a picture of him or her in her album.

2011-03-14T23:08:00.001-04:00

Saturday morning, Lily woke with a fever of 103.3. Since we were in Augusta, Dave took her to the clinic Lily's previous doctor is a part of on the weekends. The attending doctor heard a little wheezing and prescribed breathing treatments. We've been watching her breathing ever since. It's scary because I can't tell if she is retracting or not. She always shows a little sucking in under her lungs, and in the past, her doctor has said that a stuffy nose will cause it to look as if she is retracting, so which is it this time? She sounds rattily but then has a productive cough and sounds fine. Her nose is very stuffy, so we've put vapor rub on her chest, and at Molly's suggestion, we also put it on the soles of her feet and then put socks on. I'm anxious to see if that helps. She's actually had the vapor rub on for a few hours and already sounds better, though I'm still not 100 per cent sure about her breathing.
I'm always on edge when Lily is sick. I can't sleep from worrying about her and go to extremes to make sure she gets better. I was up from 2 until 5:30 this morning, giving her a breathing treatment somewhere in between, just to be on the safe side.
We'll see what tomorrow brings. I just might take her to the doctor, again, just to be on the safe side. Hopefully, we'll find that it's another cold that she's beaten.

Sent from my iPhone

Lily found something!

2011-03-11T22:50:00.004-05:00

Two nights ago, I went into Lily's bedroom to check on her, and for the first time, I saw her playing with her feet! I've been waiting over 22 months to see Lily play with her feet. I don't know why, but I just think it's the cutest thing that babies do, and it always made me a little sad that Lily didn't do that.

But two nights ago, that changed! Now LG plays with her feet all the time!

My mind knows that, developmentally speaking, Lily is behind with this. My heart sweeps that information under the rug and rejoices that my little girl plays with her feet. And I can't get enough of it! I'm constantly staring at her new "toy"!

Here's a picture of how she does it:

She even hooks her little finger around her big toe and pulls on it, but she holds on tight! And I keep staring!

Unfortunately, though, Lily caught the cold that Gabriel has. I wouldn't be so worried, but this one has gone down into Gabriel's lungs and he's now on breathing treatments. That scares me for Lily. I know there's so much worse going on in our world right now--things far worse than little colds--but if you would, please pray that this one stays away from Lily's lungs. Those are the colds that scare me the most.

Soleil's birth day

2011-03-09T16:56:00.004-05:00

On the day Soleil was born, as I waited in the hospital bed for her to arrive, I went back on my blog to the day when Lily was born. Then I read a few more posts. It was the day after she was born that stopped my heart.

I went back to that May 1st, 2009, posting, and suddenly, memories I thought I had long buried reincarnated themselves. Looking, today, at that post, there's really not much there it seems. But, oh, how I read between the lines on the day Soleil was born. The fear, the emotion, the unknown--they all burned through those lines. And I cried. I cried for that unknown, yet I cried because I have been the recipient of one of the biggest gifts one could ever receive.

We still count time with Lily, but now, I'd say, we count it by the months. Long gone are the days when the clock held the gift of practically every second.

But every second is still a gift. It's always a second more than we thought we'd ever have.

Allergies

2011-03-04T11:30:00.003-05:00

Is this the answer?!

Lily finally went and saw an allergist on Monday. He decided to go ahead and do an allergy test, and sure enough, Lily has allergies: mold, dust mites, bermuda grass, and. . .dogs! She is not allergic to her formula.

Dogs--just what I suspected.

I believe the Singulair helps and makes it worth giving to Lily as opposed to dealing with vomiting. But I can't say with certainty that her allergies were causing her to vomit. But it makes so much sense.

The doctor has also prescribed Nasonex for nasal congestion. I'm not too keen on Lily being on a lot of meds, but if this alleviates nasal swelling and helps her breath better through her nose (she's a pretty heavy mouth breather), then I'm for it.

Soon after Soleil was born, Lily began vomiting again. Then our dog passed away. Lily has not vomited since. It almost seemed obvious that allergies was possibly the cause because (1) we had just moved to a new city, (2) we had only a small bit of carpet where we previously lived, but now we have carpet in every room but the kitchen, and (3) our dog stayed outside before we moved.

On the other hand, there are still issues that could cause the vomiting, such as upping Lily's feeds or a weak stomach sphincter.

So. . .so far, I'm feeling good about this diagnosis. I guess only time will tell whether this has been the culprit all along. As for now, I'm not dealing with vomit, and that is a good thing.

If you have a child with T-18, and he or she is experiencing vomiting, I highly suggest an allergy test if you feel there may be allergies involved. It was a little uncomfortable for Lily, but it lasted only a few seconds. It was certainly worth it to be able to find out that she does have allergies, and if that's what's causing the vomiting, then we have a way to deal with that.

(My suggestion comes knowing that in Lily, she was always itching her face and occasionally had watery eyes. Also, even though she wouldn't have a runny nose, she had congestion. And with the other factors associated with the move, it just seemed right. Plus, there are times when I just have these. . .feelings. . .with Lily. I'm NOT saying that vomiting alone means there's an allergy.)

A New Song for Lily to Dance to

2011-03-02T22:05:00.006-05:00

I LOVE this song! I think I'll put it with "Consider Lily" as a theme song for Lily.

Cindy (Jordan's mom)

2011-02-26T11:34:00.003-05:00

(Sorry to others, but I don't know how to get in touch with Cindy otherwise.)
Cindy,
Thank you for your recent comments. Since you are a PT, you might be able to help. I am considering going to an Advocacy Day rally at our state house on Wednesday, and I would like to take some research with me. You said that you had read about sitting by age 2 and the likelihood of walking. Could you please share that research with me? Also, if you have any other research regarding the benefits of walking/standing, if you have the time, could you please share that with me, too?
I know I'm not giving a lot of time, but it occurred to me last night that research might be good to present if I talk to our legislatures. If you have a quick find about early intervention, or can point me in the right direction, I could use that, too.
If you would email me at southerngirl72j@comcast.net, I would be so grateful.
Jill

The Hardest Part

2011-02-25T21:22:00.004-05:00

I thought the hardest part of having three children under the age of four was going to be, well, having three children under the age of four. It is hard. Physically demanding, I must say. And it kills me to think that I might not be giving each child the attention that he or she deserves, but I try my best.

But the hardest part, emotionally, has been the clothing. No, not the washing of the clothing, which I actually do a lot of, but the hand-me-downs. Lily's hand-me-downs. I truly thought my heart was going to break the first time I pulled out our bins of little girl's clothes. They were all Lily's at one time, and pulling them out brought back very strong memories of her in them.

It probably sounds silly, but as I pulled them out for Soleil and realized that we would probably be giving them away after she outgrew them, I felt like I was giving a piece of Lily up. There's no reason why we're going to need them once Soleil outgrows them, so really, there's no sense in keeping them. Still. . .

Dave and I talked about the pain that caused, and besides pulling up the past, he commented on how, especially back then, our lives were tied up in every moment of Lily's existence. That's just the way it is when you have a child statistics tell you probably won't live past her first birthday.

As for the clothes, yesterday I got out the bin that had the 0 - 3 months, 3 months, and 3 - 6 months clothes in them. It was shocking to see clothes in that bin that Lily was wearing when we moved here last summer. Shocking! Some of those clothes were 3 month sizes! Mainly because she was so skinny. Even more shocking is that she is currently outgrowing 12 month sizes. . . in less than a year's time! My what a difference a g-tube makes!

Happy Valentine's Day

2011-02-14T16:45:00.004-05:00

To our friends and family. . .

To those who have been on this journey with us. . .

To those who have been there for us and showed us kindness we can only hope to repay. . .

Understanding

2011-02-10T15:44:00.001-05:00

Last night, Lily was sitting in my lap, facing me. Dave was sitting beside us. I told Lily that it was time for bed and that she needed to get kisses from her daddy. Immediately after I told her that, she looked right at Dave as if to acknowledge that she knew I was talking about him.

It seems that recently, this little girl has exploded with her understanding of the world. All of her therapists have commented about this. Lily is sitting up to the point where I will put a pillow behind her and walk away. She is beginning to put weight on her arms when placed in a crawling position. She watches people as they walk across the room. And she signs the word more.

I'm not kidding! Lily signs more! Her speech therapist started this with her. She would help Lily dance and then place her hands together. We caught on very quickly because (1) when she's dancing, Lily is standing and (2) Lily LOVES to stand. With this motivation behind her, I had no doubt that she would do well with this task.

I'm attaching a video of Lily dancing. In between her dances, watch her head and her hands. When she moves her head crazily and rolls her eyes, she's telling us that she wants to dance. When she puts her hands together, she's telling us that she wants more. In her own way, she's telling us she wants to dance some more.

I know the song I sing to her is irritating. It irritates me! But I sing it repeatedly because I want her to understand and anticipate. I'm also hoping that one day, she'll catch on to the sound of the song. We do play other songs with her and sing other songs to her, but I do this one a lot. In fact, there have been times when I swear she's matched the pitch of a note on her toy.

When I jump Lily up in the air, notice her legs. There was a time when she would be stiff. Now, she lifts her legs up. My hope is that this is somehow good for her abs. Sometimes when I bring her back down, she lands with stiff legs. Other times, she bends her legs. I let her strength bring her back to straight legs.

It saddens me to think about the crisis our state is going through with Medicaid. Insurance does not cover Lily's therapy, sadly, so we have to rely on Medicaid. Basically, they are saying that children with Medicaid will get 75 hours TOTAL for their therapy, yearly. Currently, Lily gets 1 hour a week for pt, one for ot, and one for speech. Do the math. If we gave up two weeks for vacation, it would take 150 hours. Something is going to either get taken out or cut back. Seeing Lily's progress and knowing how she regressed when we moved and went two months without therapy makes me shudder. Plus, everything is retroactive, starting April 1, 2010 (I think. . .or maybe it's July). If Lily has met those 75 hours, she'll have to wait until the next fiscal year to get therapy again. (There are loopholes with doctor recommendations, but I'm not sure how willing the doctor will be to do the paperwork.)

After so much progress, I'd hate to see Lily lose out.

Physical Therapy

2011-02-04T17:28:00.002-05:00

Lily has been receiving physical therapy since she was an infant. Before we moved to Charleston, therapy involved strengthening Lily's muscles so she could do the more physical activities we were hoping she would do. Her physical therapist had read a study that stated that children who could sit on their own by the age of two were more likely to walk than those who were able to after the age of two, although not necessarily by conventional means. (I don't know where that information came from, but we didn't want to risk NOT believing it.) Needless to say, we've made a push to get Lily sittin' pretty.

But we didn't stop there. After Lily's g-tube surgery, we took about a two-month rest from therapy while we waited for paperwork to be transferred and new agencies to kick into gear. Lily had her pt evaluation on July 14. During that evaluation, Lily would sit up for maybe one or two seconds and would not weight-bear on her legs. After four months of weekly one-hour therapy visits, Lily began to bear weight on her legs. Around the same time, she also had a few instances where she sat on her own for over a minute.

If you saw Lily stand, you would know why she has been so successful at it. She loves it! She is so proud of herself and her accomplishment. I love that type of motivation! Lily is now at the point where she will sit at the edge of a bouncy seat and push herself up to standing (with us holding her under her arms). Sometimes, you can just see (and hear) the drive she has to get herself into that standing position. She struggles, but she wants to stand so badly.

At this point, she can sit by herself, but she has this bad habit of nodding her head backwards and falling back. I think it's a game for her, and we're always there to catch her, but she gets a kick out of it. I don't know how we'll change that habit of hers. There have been times when she has sat for more than five minutes. We're really successful if she's distracted with something like football. (My little tomboy!)

Despite all of this sitting and standing, Lily may never walk. That doesn't mean that we won't give her the opportunity to take that first step if that's what she's interested in doing. We give her plenty of chances for that. But I think her own motivation pushes her as much as we do. Who knows, maybe one day I'll be sharing a video of her walking.

This video was taken at Thanksgiving. Normally, we would hold Lily under her arms, but this time, she used the coffee table to support herself. I love this video because it shows how happy Lily is when she stands.

Putting Out Fires

2011-01-26T21:14:00.003-05:00

Yesterday, Gabriel and I spent the morning playing firefighter. We'd drive on our sofa firetruck until we saw a fire and then we'd jump out, take our hoses off, and spray the fire out.

If only those were the only fires I was putting out yesterday.

With sleep deprivation looming over everything, Lily vomited once. Soleil, twice. Each time, I got a nice bit of it on me. Our 15 year old, 70+ pound dog slipped in our kitchen, but he was too heavy for me to help him up, so on our kitchen floor he stayed, and that was painful to watch. No one wanted to sleep at the same time, so a nap was unheard of.

It used to be that when Lily vomited, a panic would come over me and I'd clean her up in a tizzy. Anymore, I just grab the towel and wipe and play with her cheeks, hoping that I can convince her that she can focus on something else to keep from bringing her milk up. It never works.

Yesterday, this anger (not at the kids) overtook me for a second. I imagined this little sprite sitting off in some corner getting a good laugh at all he'd put me through. My first thought was how I'd like to punch him so! Silly, I know. Then I stopped and thought about it and just. . .accepted it all. It is what it is. Deal with it.

It's not easy. But it's got to be taken care of and I'm the one here during the day to do that.

Soleil--who rarely ever cries, by the way--is crying. Time to put out another fire.

Lily licks (I mean, loves) her sister

2011-01-15T17:36:00.003-05:00

You may have to watch this video twice. The first time, to see Lily giving Soleil a taste. The second time, to watch Lily's hand.

Allergies?

2011-01-12T23:00:00.003-05:00

I can't tell you how many days we have been vomit free, but I will say that it could not have come at a better time. It just so happened that before Soleil was born, I took Lily again to the doctor because she sounded congested and I wanted to make sure she wasn't going to be contagious. The doctor noticed that we had seen him SIX times since September for the same problem, and practically each time, he thought he heard wheezing but could never be sure due to her loud congestion.

I questioned whether it could be allergies. When my "allergies" act up, my face itches, my eyes water, and I have drainage in the back of my throat that makes my throat itch. Lily was rubbing her face a lot, Dave and I had noticed her eyes looked watery, and it just seemed to me that drainage in the back of her throat (there were times when we never saw evidence of a runny nose) could have been causing a tickling feeling, thus causing the vomiting. Plus, there are two things here that we didn't have back at our old house--an inside dog and carpet.

I'm not one to quickly put my children on medicine, but when the doctor suggested Singulair and told me that it helped with wheezing and had an antihistamine, I was willing to try it.

Lily has not vomited since. I still keep a towel downstairs, just in case, but I'm so much more relaxed when I feed her. That's such a good feeling!

More Pictures of Soleil

2011-01-10T22:28:00.005-05:00

Zilla's a girl!

2011-01-08T21:11:00.004-05:00

Moments after birth

After her first bath--our little frog

Meet Soleil Faith
Born January 7
3:42 pm
5 pounds 14 ounces
20 inches long

We're now home and doing fine. She's such a sweet little girl. I know it's only been a little over 24 hours, but she's quiet and loving and so cuddly. And tiny. Just a little bigger than Lily was when she was born.

I'm glad to be home. I've missed Gabriel and Lily, and they missed me. Lily was so cute when I got home. I honestly think she heard my voice because she whined until I picked her up and started playing with her. Then she was so happy and she kept showing me how much of a big girl she is. Gosh, she feels different, so chunky.

Thank you so much for your thoughts and prayers throughout this pregnancy.

That Still, Small Voice

2010-12-30T10:15:00.003-05:00

Oh, how many lessons have I learned from Lily? I believe the list is never ending. One of the lessons that is in the spotlight these days is hearing That Still, Small Voice. . .and listening to it. I can't really say that I heard that voice when I was pregnant with Lily. Instead, I just trusted with blind faith. Nothing told me to trust. I just did. I likened it to the Nestee Plunge--just falling back into God's hands.

With Zilla, though, things have been so much different. I think I've said it before, but the baby's abdomen is measuring small. They keep telling us that we just have a skinny baby, but I've had ultrasound after ultrasound, and now I'm at the point where I'm having to do a kick count twice a day. Things like that add worry to this pregnancy.

But every time I worry, I hear this whisper--Trust Me. It's such a settling voice. But here's the rub: When I hear that voice, I realize that it doesn't necessarily mean that everything is going to be perfect. Instead, I know that it means that no matter what happens, God's love will wrap around us like a hand-knitted shawl. It will warm us in our joy or help to comfort us in our sorrow or help us endure in the difficult days.

It's been doing that for us with Lily all along.

Merry Christmas!

2010-12-27T22:30:00.004-05:00

From our family to yours, Merry Christmas! (It's been a busy few days, hence the belated post.) A few updates. . .

Lily's vomitting has gotten better. After about three days with none at all, she did vomit once today. I really think it's sinus related, coupled with the possibility that Lily's stomach sphincter just isn't strong enough due to her low tone. I was told by Molly, one of Lily's NICU nurses, that if she's vomitting once a day (or less) we really don't have much to worry about. More than that, though, and we should pursue testing.

Lily had a VCUG done. The process itself was horrible for her. The techs tried at least three times to insert the catheter then decided to call in the doctor. Lily was not happy! The doctor tried at least three times before finally realizing that Lily's vagina has a fold in it; therefore, finally getting it right. That process was hard to endure. There was a part of me that wanted to scream enough! But there was another part that realized that we needed to know whether or not Lily's kidneys were refluxing. As bad as it was, I'm glad we went through it. Now I know, if Lily's urine needs to be tested, I'll insist that she get bagged instead of cathed. That test came back negative. Yeah!

As for Zilla, I had about two hours worth of contractions last night. Although I haven't dilated any, the doctor says it's possible that Zilla could be here before the induction date. That would be nice not to have to be induced.

Here are a few pictures we took over the holidays. It's hard to believe that this is our second Christmas with Lily. It's also hard to believe that in a few days, she'll be twenty months! We have so much to be thankful for!

We finally caught the cookie monster!

My mom got Lily this toy. I love it because it flips so Lily can look at it while lying on the floor, she can stand to play with it, or she can sit like she's doing in this picture. Lily doesn't play much with toys, but today, while on the floor, she was patting at the pieces that hang down. It was such a sight to see!

Christmas Eve was spent at my mom's. This is another toy that Lily got, but she wasn't interested in the unwrapping. We tried to wake her up but to no avail. This toy can be put on Lily's crib, and she can use her feet to play the "piano." Lily LOVES touching things with her feet, so I just know she'll love this toy.

Lily loves giving Gabriel hugs!

Poor Mary

2010-12-21T17:49:00.003-05:00

I love The Christmas Story. I love to think about Baby Jesus and His humble birth and contrast that with the King he actually was. I love to think that the stable is alight with a warm glow and that everything is so peaceful. The visitors come and bow down, quietly contemplating the Savior before them. They just know that before them is no regular baby.

But there's a part of me that knows this story has been romanticized, and I feel that sentiment now more than ever. The other night, I just couldn't help but think about Mary and how pregnant she was on that trek to Bethelehem. How uncomfortable she must have been, how painful labor had to have been, how exhausted she had to have felt. We hear none of that in The Christmas Story. Perhaps for a reason, but I'm not here to discuss that.

I just can't help but feel a deep appreciation for what she must have gone through. Although I am due January 14, as far as we know, the doctor is going to induce on January 7. It's hard to get up off the floor, let alone to get out of chairs. I have to roll out of bed, and my arms help pull me up because my legs just aren't working like they should. My hips hurt, and I just. . .feel. . .old. The other night, I went to hang out at a restaurant with some girls from church, and we sat on hard barstool-type chairs. I was there for a little more than 2 hours. Boy, did I pay for that the next day.

So I can only imagine what Mary experienced. Poor Mary.*

*As a side note, as any mother will tell you, and I'm sure Mary will too. . . It was all worth it.

Motivation

2010-12-04T14:25:00.005-05:00

I've been wanting to make this post for a few weeks, but I've been sitting on the topic, trying to give it the eloquence it deserves.

Motivation interests me. Not so much the type that gets people up and moving, but more the motivation that makes people tick. One such topic that I have trouble understanding is when people--especially the medical community--have such a callous attitude towards children with Trisomy 18. I just can't understand how a person who has dedicated his or her life to helping people can turn his head and refuse to treat this child with the dignity he or she deserves.

A few weeks ago, I happened upon a blog written by a medical student. The author of this blog has created a "study guide" that relates certain medical issues with musicians. This blog I read related Trisomy 18 to Eddy Money. He hoped he wasn't going to hell for such a post.

I left a comment to this author and told him that I didn't think he was going to hell--that as a mother of a baby with T-18 I wasn't offended--and that I thought it was great that he could create a mnemonic device for his studies. I briefly told him about Lily and the fact that some of our T-18 babies didn't fit the mold of statistics and asked him to keep that in mind when he became a doctor. Little did I know the impact that comment would have.

A few days later, I received this email from a girl named Laura.

I was visiting my friend's music blog site and I came across your post. After reading through your blog, and watching Lily's videos, I am left without words on how to thank you. She is beautiful. I can only imagine the struggles you must be going through and have gone through. As another student at Jimmy's university I have become all too familiar with the crazy ways we find to remember things. Every disease we learn gets filed away nice and cleanly into our inner-brain disease archives. So many things get shoved in until these diseases become just words. We forget that every disease will be associated with a patient. We all come in with such an intention to do good and help as many people as possible, and then throughout our years in school, with constant reading, tests and lack of human contact something gets crushed a little. Recently I have been so confused about what I am doing all this for. At this moment there really doesn't seem to be any light at the end of the tunnel, because nothing but books alone help people forget love for humanity. Then I read your blog and found that love again.

Lily is amazing and wonderful and already a very powerful woman!
More med-students need to become aware of things in a much more personal way.

Needless to say, I was touched. I always hope that this blog will help others who have a child with T-18, living or in utero. Never did I imagine Lily's blog would have reached out to someone in the medical community.

Laura and I exchanged a few emails. In those emails, I explained to Laura our reason for giving Lily the chance to live and what we dealt with from some in the medical community, among other things. I found two interesting things out (among other things): 1) that Laura's view of abortion has changed, and 2) that Laura and her friend Jimmy (the author of the above-mentioned blog) have been talking to their fellow students about Trisomy 18.

I have been so impressed with this young lady. And I want to say that it's not because she has changed her view on abortion. It's more that she has been willing to open her heart and recognize the need to do so at a time when books and intelligence were shadowing her heart from the true reason she is pursuing the medical profession--her love for humanity. It makes me wonder how many med students this actually happens to.

In Laura's emails, I have gained a bit of compassion that I had perhaps lost in the medical community. I have found a bit of understanding in what "motivates" the thoughts of some of the doctors involved in Lily's care. Some of that makes sense now.

Laura has motivated me as well. There's a program in South Carolina that connects medical students with families of children with disabilities. This program is designed to move medical students from the "textbook definition" of a disability into the reality of life with a disabled child. I had been wanting to get involved with this program but always put it off. Since communicating with Laura, I have contacted the organization, only to find that the program doesn't exist in the Charleston area, but they see a need for it to get set up. Hopefully, I can be a catalyst for our area's program. There's definitely a passion in my heart for it.

And to Laura, thank you for opening my eyes to the life of a medical student. You are a remarkable young woman with such an impressive depth of understanding. And thank you for recognizing the beauty of our little ones with Trisomy 18. You have so much to give to the medical community.

A Renewed Thanks

2010-11-25T13:26:00.002-05:00

I have been following this blog of a little boy, Jedidiah, who (so everyone thought) had Trisomy 13. After he was born, testing found that he had Trisomy 18. He was able to go home with his family, but he recently passed away. His mother wrote of her experience with the doctors and nurses after Jedidiah's birth. You can read that story at http://trisomyjourney.blogspot.com/2010/11/medical-mindset-you-are-your-childs.html. I'm shocked at the callousness some of those professionals showed this family.

Jedidiah's story has been on my mind so much lately. It heightens my appreciation for our experience in the hospital with Lily and how our doctors and nurses gave Lily so much love, despite their knowledge of the statistics. Dave believes Lily was able to make it out of the hospital because of the love they helped us shower on her. The tenderness, the care, the compassion that they gave her--oh, how can we ever repay that?

So when Dave and I were talking about things we were thankful for. . .well, I just couldn't help but feel the deepest, renewed sense of gratitude for the hospital staff who took care of us after Lily was born.

More than I can handle

2010-11-18T20:26:00.004-05:00

Have you ever been so frustrated that you lost your voice? I'm not talking about our talking voice. I'm talking about the voice that is able to tell the story or recount the events. The voice that works when you are able to keep it all together.

I lost mine today. It's the second time this has happened, and both times involved Lily. The first time was the day of my amnio, when the genetic counselor asked me if I knew anything about Trisomy 18. My voice failed me, and all I could do was cry. Luckily, Dave, my knight in shining armor, was there to answer for me. And, luckily, he was willing to be there for me today, this second time that I've lost my voice.

I've been dealing with vomit for two weeks now, and today, I think the bending from all of the weight that comes with a baby who has Trisomy 18 broke me. It's not so much the vomit itself or having to do laundry every day or any one piece of this parcel. It's the complete package, plus the worry that comes along with it, plus the feeling that I'm not being listened to when my heart tells me we need to get to the bottom of this, plus the uncertainty. I'm afraid to go places, worrying that Lily might make a mess all over the place.

It all started after Lily's g-tube got placed, but I can't say the g-tube is the culprit. (Can't rule it out, either.) And it really didn't begin until the first time Lily got sick after the g-tube got placed. I think I've posted about it before, but she either sneezes or coughs and then she vomits. I'm not talking about a little dribbling down her mouth. I'm talking about projectile. I'm talking about 1 to 4 or 5 ounces being lost each time.

But it doesn't happen consistently, which is probably just as frustrating, and it doesn't necessarily happen while I'm feeding her (although it does at times). Sometimes it happens 15 to 30 minutes after I feed her; other times, it occurs 2 to 3 hours later. But it always happens with a sneeze or a cough. The doctor has prescribed an antibiotic, thinking that maybe she has a sinus infection or ear infection or UTI--not sure if vomiting would be caused by any or all of the above--but Lily's ear canals are too small to tell if she has an ear infection. She does sound a little gurgly sometimes, and her undiagnosed sleep apnea has been worse the past few days, so sinuses could be causing that. Her urine has a peculiar smell, which leads me to believe she might have a UTI, but it seems to me as if it's all speculation. That's not enough for me. I want answers.

So the vomiting started with that cold that came some time after the g-tube, and it's been pretty consistent that whenever Lily has a cold, this is what we can expect. Until two weeks ago. That's when the nutritionist suggested that we up her intake 1/2 an ounce at each feeding for a week and then another 1/2 ounce after that so she will be getting 6 ounces instead of 5. Last night, though, thinking that maybe 6 ounces is just too much for her right now, I lowered the dose to about 4 1/2. I awoke at one this morning to hard crying and vomit all over Lily and in her crib. This is the third or fourth night in a row that she's thrown up in her crib. Yesterday morning, she threw up while the PT was here, and today she's thrown up twice. So maybe the amount wasn't too much.

I'm so tired of all of this. Like I said, I want answers, or at least suggestions. Dave tried to call the doctor, but had to leave a message and the call was never returned. (I could not have done it. I cried just telling him all about it.)

The only ball I feel I have in my hands right now is to change her formula, which we did this evening. So far, so good, so maybe there's some kind of intolerance to what she's been drinking. I don't want to sound too pessimistic here, but I'm not holding my breath because the vomitting has been so inconsistent. It doesn't happen every time she gets fed. Is this one of those times?

The good news is that Lily doesn't seem to be in pain. After each episode, she cries or fusses (heck, I would too), but she gets over it and then wants to play.

There just seems to be so many possibilities:
allergy or sensitivity?
something wrong with her stomach emptying?
congestion?
some ear, nose, throat issue?
could adnoids or tonsils cause something like this--I'm relating only because of the apnea?
reflux?

Gosh, if anyone out there has any suggestions or a related experience, I could really, REALLY use a few pointers. It's frustrating to me, but I can only imagine what it's putting Lily through.

Enough venting for the night. I feel better, but I think I still need Dave to be my voice with the doctors. Right now, I'm afraid I'll just come across as some crazy woman speculating anything and everything that could be wrong. And something tells me that this is one time when I need to keep my cool.

Just had to share this one

2010-11-13T08:27:00.004-05:00

We have the girl name picked out, but we don't have a boy name yet. We keep going back and forth and just haven't necessarily found the "perfect" one.

Last night, we asked Gabriel what he thought we should name the baby in the event we have a boy.

His answer? (Now, are you ready for this one?!)

Godzilla.

And he was very serious about it.

I'm still laughing!

Disappointed

2010-11-11T15:47:00.004-05:00

The following article was in our local newspaper yesterday. My heart is burning on this one. I am so disappointed in our state. I am so disappointed (yet I feel very sorry for their heartlessness) in the number of people who left comments about this article who believe that Medicaid is a joke because lazy people take advantage of it.

Lily is on Medicaid because, well, basically, she has a disability. Without Medicaid, she would not have physical therapy where we've seen her improve at an unbelievable rate. (Our health insurance does not pay for it. I'm not sure if her OT or Speech or Orientation and Mobility is covered by health insurance or not.) Without Medicaid, we would not be able to give her the formula her doctors recommend, and I'm not sure if regular milk would sustain her and allow her to grow in the way her formula has. She surely doesn't take in enough solids to sustain her. (Oh, our health insurance does not pay for that either.) Without Medicaid, she would not have her stander--which I believe helps her constipation and I know develops her hip sockets to help avoid hip problems in the future--because, once again, our health insurance doesn't pay for it. And without Medicaid, we would have an astronomical amount of medical bills that would be very difficult to pay since I'm not working.

It angers me because--and I'm not gloating here--Dave and I are good people. This is not a system we are trying to beat. It's a system we, and Lily, could not live without. Making the decision to stay home instead of working was a very difficult decision, but it is one we made out of complete selflessness for our little girl. We have sacrificed to a point where I am sometimes tired of sacrificing. Luckily, every time there's a sacrifice to be made, I only have to look at Lily's smile or hear her coos or see the adoration in her eyes for her family, and I know that sacrifice has been worth it. Humbled maybe, but lazy we have not been. As a matter of fact, sometimes there's a sense of shame that attaches to this need.

So point blank. I am scared. I am worried about what the future holds for not only Lily but for every little boy or girl, disabled or not, lazy parents or not. It is not fair to them. There is so much research out there regarding early intervention (which Medicaid happens to cover) and how imperative it is to the developement of a child who is behind. It hurts to see how much Lily has benefitted from just this, and I'm appalled that South Carolina is even considering "[cutting] off coverage for everyone."

I'm so sorry to be venting here. My fear incites it.

COLUMBIA -- The 820,000 residents on Medicaid in South Carolina are breaking the bank and state officials are now facing a big decision: allow the program to run $228 million in the red or cut off coverage for everyone.

The state Department of Health and Human Services announced Tuesday that it is facing a budget crisis. The agency, which oversees government-run health insurance for poor people and children, will have to ask the state Budget and Control Board on Dec. 14 to run a deficit, a move that is expected to ignite a firestorm among politicians over what South Carolina should be expected to pay for in the face of federal health care reform.

Without approval to run a deficit, the agency proposes to stop paying doctors, hospitals and other health care providers who treat Medicaid patients on March 4. The claims would be received and processed but not paid until there is more cash in the bank.

The agency says it is backed into a corner. The state's dramatic economic downturn has forced more than 100,000 people in three years onto the Medicaid rolls, which now carry 43 percent of the state's children. And when the state accepted federal cash from the stimulus package,

South Carolina agreed not to kick anyone off of Medicaid by changing eligibility standards. What's more, state lawmakers further bound the agency by limiting places to trim expenses, such as by barring the agency from dropping the rates it pays the doctors who treat Medicaid patients. South Carolina is the only state that has prohibited its Medicaid agency from lowering the provider reimbursement rates, while at least 40 other states have done just that to manage budget shortfalls.

Jeff Stensland, director of communications for the Health and Human Services Department, said the agency has fewer resources to meet a tremendous growth in demand. The agency saved $22.9 million with cost-cutting measures, including laying off and not replacing staff. That's combined with facing $228 million in budget cuts in the past three years and having $550 million from its savings account transferred to plug budget shortfalls in other government programs.

"The challenge we have is simply paying for health care services for all the people who qualify for Medicaid," he said.

Decisions about what South Carolina will do to manage the budget crisis come with high stakes that include issuing IOUs to doctors or outright rejecting participation in the Medicaid program, resulting in a loss of coverage for the 820,000 people and $4.1 billion annually from the federal government that keeps the health care industry -- doctors, nursing homes and hospitals -- in business. Some programs on the chopping block also would affect services the state's elderly and disabled receive.

The five-member Budget and Control Board is expected to take up the matter at its December meeting. From there, lawmakers and Gov.-elect Nikki Haley will have to make decisions about what South Carolina will do to address the budget crisis going forward.

Department of Health and Human Services
Deficit Reduction Plan - PDF
Haley said she will fight the new health care reform law all the way to the U.S. Supreme Court. Meanwhile, newly elected members of Congress, including 1st District U.S. Rep.-elect Tim Scott, a Charleston Republican, have vowed to make its repeal a top priority.

Ben Fox, communications director for Gov. Mark Sanford, said the governor's office still is in discussions on the developing issue that came to a head Tuesday. Sanford oversees the Health and Human Services Department as part of his Cabinet and is chairman of the Budget and Control Board. The board has control of much of the state's purse strings and manages financial crises when the state Legislature is not in session. Lawmakers will convene again in January.

State Rep. Dan Cooper, a Piedmont Republican who chairs the House Ways and Means Committee, said that given the consequences he is not sure the Budget and Control Board members will be left with a choice. He serves on the board with Sanford, the state treasurer, comptroller general and Senate Finance Chairman Hugh Leatherman, a Florence Republican.

Cooper said the impact on withdrawing from the Medicaid program cannot be overstated. Workers across the state, from the doctors and nurses and dentists to the medical suppliers and offices professionals, risk losing their livelihood, worsening the state's already bad economic situation and high unemployment rate, Cooper said.

"We're certainly trying to explore all the options out there," Cooper said, adding "I don't know what that all means yet."

Covering the politics of the Lowcountry, South Carolina and the nation.

Likewise, Deputy State Treasurer Scott Malyerck said late Tuesday that outgoing Treasurer Converse Chellis is mulling over the situation. Chellis is reviewing information from the Health and Human Services Department and crunching the numbers.

Comptroller General Richard Eckstrom, who just won re-election to another term, said the state constitution makes it clear that the state cannot spend more than it takes in. He sees the only option as working with the agency to find ways to push the spending back into the black.

"This is going to require us to make tough choices because spending beyond our means can't be an option," Eckstrom said, noting that the federal stimulus money that he opposed was never "free."

A Few Recent Pictures

2010-11-10T14:12:00.006-05:00

Gabriel LOVES his little sister. She LOVES him, too!

Gabriel will go up to Lily and lay beside her. Immediately, she'll roll over and put her arm up on him, like you see her doing in this picture. She'll lift her legs up and put herself into a little ball. It really looks as if they're wrestling on the floor.

Lily loves to blow "raspberries." Sometimes she'll do it for five or so minutes at a time. She leaves quite the mess!

Sweet as candy for Halloween.

Lily with her hero.

Another happy face before bathtime!

I just love her cheeks!

Girl or boy?

2010-10-26T18:39:00.005-04:00

My mom says it's a girl.

My former co-worker's string test says it's a boy.

Santa says it's a girl.

I'm feeling boy.

What do you think?

I'm mad, but God works in mysterious ways

2010-10-21T22:10:00.002-04:00

Lily is sick again--the second time in five months--and I can't help but wonder if it's because we took her to Dave's old school and a few of the children there grabbed her hands before I could stop them. I usually am pretty quick to keep an eye out and suggest that they feel her feet instead of her hands, but too much was going on. It probably wouldn't be a problem, really, but Lily puts her hands in her mouth constantly, so germs are quick to spread.

Maybe I'm just needing something to blame. It's just really hard anymore when Lily gets congested because she has a hard time tolerating anything that we feed her through her tube. In the past two days, I've dealt with vomiting in her car seat, on the living room floor multiple times, and in her bed. It's never fun because I'm usually holding the syringe when it happens. First comes the cough or the sneeze, then the mess.

It's also heartbreaking to see our little girl who's usually so full of life to be so lethargic. She's slept off and on all day long. She did stay awake long enough to watch Barney (her favorite show) with Gabriel. Then, this evening, she ate a little by mouth and stayed awake while we went for a stroll. But as soon as her bath was over and she was dressed, she was out. Poor thing. I guess she's really trying to get over this cold.

But here's the kicker. Lily was denied the Synergist (spelling?) vaccine. This is the vaccine for RSV. I consider it a much-needed vaccine, especially for children with T-18, because I've been through RSV with Gabriel, and trust me, it's not fun. When I talked to the receptionist at the doctor's office yesterday when I was making Lily's appointment, she told me about how Lily was denied, but then she said, "Well, if she gets to a point where we have to put her on a breathing treatment, we can appeal the decision." I told her that Lily was having trouble breathing, so she said that we would just have to wait and see what the doctor found. Lo and behold, he heard wheezing and prescribed a breathing treatment for Lily. (May I add that Lily did not see her usual pediatrician at this appointment.)

When we went in for her recheck today, her usual pediatrician looked at her file and said, "God works in mysterious ways." I was a little perplexed because he sounded so happy while I'm sitting there with my sick little girl. He explained how the information about the denial had been sitting on his desk and he was wondering how we were going to handle it, and here's Lily with a diagnosis of wheezing. He felt that was enough to appeal the vaccine.

I've seen time and time again with Lily that God does work in mysterious ways. I've also seen that most of those times, I begin mad because something didn't go the easy way, but I reach a point, humbled, because I wasn't patient enough to see it through, to see that God's mystery has been there all along. I can be so blind sometimes.

Now, Lily might still be denied, but at least if she is,this episode is the beginning of what Lily needs to convince whoever needs to be convinced that Lily can definitely benefit from this vaccine.

Quality of Life Week -- Day Five

2010-10-01T23:10:00.006-04:00

Lily's laughter. I just can't get enough of it, so I thought it appropriate to post this video of her laughing. Dave can get her rolling, as you will see in this video. This is how she sounds when she laughs really hard.

Thank you for following this week. It has been fun sharing these videos of Lily. I hope, in some way, that they can be used to slow down the "incompatible with life" mentality that others are so quick to assign to our children. I know, I know. . .the statistics. They are there and they are real. I do not deny that. But we never truly know. After all, they are only statistics. And on the other side of them, well, that's where our miracles reside.

Quality of Life Week -- Day Four

2010-09-30T15:39:00.002-04:00

I think when a parent finds out his or her unborn child has Trisomy 18, grieving occurs for a number of reasons. One, for the horror the statistics show. There is a no guarantee your child will be born alive. Two, that grief for the "normal" child you won't have.

I grieved in both ways. I think most parents are terrified of having a child with special needs. Autism, down syndrome, and the like--no parent wishes this on their child. I will admit it: I was terrified. But now that I have Lily, I can understand that joy that a child with special needs brings to those who love her. Had I not had Lily, it's a joy I would have never known. To me, that is special.

This video is of Lily right before bathtime. She LOVES getting a bath. She thinks that any time we take her clothes off, bathtime is near, for she gets so happy and excited.

Quality of Life -- Day Three

2010-09-29T14:19:00.002-04:00

The love I have for my children is equal. Sometimes I wonder if they think that's true, but it is. I would step in front of a moving train just as quickly for one as I would the other. But here's something I don't think they'll understand and they might even think is unfair.

When Lily does something developmentally new, I feel this joy I've never felt with my other children.

That does not mean that I don't feel joy with my other children. I certainly do. It's just more intense with Lily. I think it's so intense because I've always had an expectation for Rani and Autumn and Gabriel. I expected them to smile and roll over and sit up by themselves and laugh and to have all those other appropriate developments at various stages of their lives. With Lily, I have no idea what to expect.

I rejoice when she smiles and rolls over and holds her head up. I can't get enough of her sweet laughter, even though it sometimes sounds like she can't decide whether she wants to laugh or cry. I have hope that one day she'll be able to walk in some sort of way. That hope lightly floats in my heart like a bubble on a soft wind.

Lily laughs. And my heart laughs and sings and rejoices with every laugh she makes. Enjoy, as I do.

Quality of Life Week -- Day Two

2010-09-28T15:23:00.004-04:00

I learned that I was at high risk for having a baby with Trisomy 18 from a nurse at my doctor's office. I had never heard of this condition before. So I asked the girl what Trisomy 18 was. Oh, it means that your baby will be severely mentally retarded. I was shocked, but I kept imagining, based on this woman's definition, this child in a chair, incoherent to the world around him or her. At the time, I wondered what kind of life a child like that could have. I wondered if that was the kind of life my unborn child would have.

Then I went online and began looking. And I found children like Annabel and Zoe and Vera, to name a few. I heard from Sarah with her little girl, Alice. I began to realize that children with Trisomy 18 could have quite the life. No, it might not be easy, but these children could be happy, life-loving children. And my hope for Lily Grace, child with Trisomy 18, began.

Here is a video from later that day. If she's not sleeping or sucking her thumb and just chilling, this is how Lily is--playing with Gabriel, cooing, lifting her fat legs, rolling, and lifting her head. She has a blast doing this!

Quality of Life Week -- Day 1

2010-09-27T14:23:00.003-04:00

Lately, I've been giving a lot of thought to the phrase "quality of life," and more specifically, how it relates to Trisomy 18. I have Google Alerts set to Trisomy 18, and any time I see a post, I also usually see "incompatible with life" and other alarming phrases and statistics that accompany this condition.

I know that there are doctors out there who immediately suggest termination upon seeing that their patient's baby has Trisomy 18. I understand their reasoning if they are protecting themselves, but what I don't understand is how those doctors can't see beyond the label.

Yes, I am very aware of the statistics. They have stared me down EVERY day since Lily's birth. I KNOW how fortunate we are that Lily has made it this far and that she is doing well considering. I also know that others aren't as fortunate, and my heart breaks for them day in and day out.

But the alarming phrases and statistics make it seem as if our babies can't have quality of life, and to that, I beg to differ. I think about Lily, our two little Annabels and Rebekah and Kaitlyn. Akaiya, Vera, Nolan, Alyssa, Mikayla. . .this list is bound to go on! These little rebels shake their fists at those statistics! And while I'm sure not every day is easy, these little ones smile when they hear What about quality of life?

So I'm creating for my blog a Quality of Life Week. I usually don't post a whole lot of videos, but this week, I'm posting videos that show Lily throughout the day, enjoying life to the fullest. I begin with a video of how she is first thing in the morning. Like her brother is and was when he was a baby, she is a bundle of joy and so happy. My heart beams to see her this way.

Therapy

2010-09-23T15:22:00.003-04:00

Lily has come such a long way with her physical therapy. When we moved here in June, she wasn't doing too good of a job holding her head up when on the floor. She could roll, but she would only do it once or twice a day. She was not trying to stand. She was not holding her legs up at a ninety degree angle with her body. Now, she holds her head so high and gets her chest off of the floor, she is a roly poly, she loves standing, and she's always lifting her legs up. She has come a long way!

Three months ago, when Lily's PT did her evaluation, Lily was not able to bear weight on her legs while being held. She would just collapse. Some time along the way, she started to love standing while being held, so her PT decided about a month ago to put Lily against one of our chairs and see if she would lean against it and stand. Lily wouldn't do it.

Today, because Lily has improved so much with her standing time, the PT decided to try putting her against the chair again. This time, Lily did it! Then we got out the small ball that Lily stands against to practice her standing. Gabriel asked if he could hold her hand. The therapist let him. During this time, the therapist pulled Lily back a little so that she wouldn't rely on leaning on the ball. Gabriel continued to hold her hand. The therapist pulled her back a little more, so she was standing up straight.

So there they were, Lily and Gabriel, standing beside each other, holding hands. Lily was looking up at her brother, admiring him. I teared up.

Sometimes when we're in the grocery store and Gabriel is in a shopping cart that has room for two to sit in it, he'll say that one day Lily is going to sit beside him. I just keep on agreeing. It breaks my heart because I just don't know if she ever will or not. That doesn't keep us from trying to get her to that point--boy, do we try--but we're not guaranteed anything with this little one. So I was thinking about how Gabriel wants so badly for Lily to sit beside him in the shopping cart and how he's also said he and Lily are going to run beside each other some day. Seeing them standing beside each other like that today was as close as we've come (even though she was still being held up) to realizing that dream. I wish I had my camera close by. It was such a touching moment.

It's something we deal with every day when we're working with Lily to try and build her muscles. In our head, we know she may never have the muscle tone to walk on her own or even with a walker, but in our hearts. . .well, we just keep on believing that this little girl will one day move mountains. She's on her way! You just wait and see!

I have another prayer request. I got an email yesterday from Kristina. She is due on October 25, and her baby, Layne, has Trisomy 18. Layne has a VSD and her left kidney isn't emptying all the way. She is six weeks behind in her growth. Kristina is afraid that Layne will be here soon because both of her other children were early. If you will, please pray for Kristina and Layne and their family. Thank you.

Dear Givers

2010-09-22T15:38:00.003-04:00

My dear givers,
Every month or so, we get a gift from you. We have no idea who you (all) are, but we are so grateful for your kind and giving spirit. We feel as if we don't thank you enough, but there are so many times I say a silent thank you. Moving to Charleston was not easy financially, even though now I think we're doing ok. But how many times have we needed diapers or gas or a date night or clothes, and the gifts you provided us with were there? Countless!

Today, an even bigger gift was given. It was the usual from one of our "friends," but the envelope had been ripped open at the very top of the envelope, as if someone had taken a knife right to the seam. Had it been ripped a fraction of a bit more, the cards could have fallen out. (I'm hoping you only sent three. . .that's what we usually get.) But they didn't! Even the prayer card was still in there, reading "God is my strength and power: and he maketh my way perfect" and "I can do everything through him who gives me strength." Is this a sign?!

So today, I send a thank you to you, my givers, but also to those who honestly handled our mail. How easy it could have been to take such a gift! I love it when I see evidence of good people in the world! Thank you!

On another note: There is a little girl out there, Lilly, who has Trisomy 18. She is in severe heart failure, but her parents have found someone to do surgery on her provided she gains enough weight. The little thing is at 4 lbs. 9 oz., yet the doctor wants her to be as close to 10 lbs for her surgery. They feel they are racing against time. With all the tests and hookups, her mother is wondering if she's chosen the right option. Please, please pray for this little girl and her family. While we never had to consider surgery for Lily, I can remember wondering if we chose the right life for her with our selfish love for her. Oh, what this mother must be going through! If you're interested, you can follow Lilly's story at http://pray4lilly.blogspot.com.

The Arms of Peace

2010-09-18T20:31:00.003-04:00

Last night, I was lying in bed and this thought came to mind. It was a weird thought, and I have no idea where it came from.

I was thinking about science fiction/fantasy movies where the main character is walking through the woods, and all of a sudden, the trees come to life and one of them grabs the main character. He struggles, but the tree's grasp becomes stronger. Maybe the tree pulls him into the ground; its aim: to destroy.

Then my thought changed. What if, instead, the tree grabs the main character, but its aim is not to destroy. The main character doesn't know this, so he struggles. The tree's grasp becomes stronger, but only because all it knows is its purpose--still to pull him into the ground, but not to destroy. Instead, to share with him the connection that this tree has known all of its life. Its connection with the soil and the organisms, with what has lived and died. And in this connection, the main character would find peace. If only he knew. . .

I thought about it for a while. Then I took it a step further and related it to reality. What if that's how it is with God. Are we that blinded main character who struggles against all the bad that humanity has to offer, whether it be fear or anger or jealousy or worry? Are we fighting against God because life isn't going the way we define 'perfect'? Do we see Him as the tree trying to pull us under to destroy us? Or can we look past the struggle and instead find that our struggles connect us to that around us, with what has lived and died? Can we accept the peace that He is offering us beyond the struggle?

It isn't easy. I had an ultrasound the other day. This baby is weighing a little smaller than it should be. Only a week or so, and normally, that would be ok. But the fact that Lily has Trisomy 18 had them a little concerned. There are no markers that should give more concern, but when the sonographer was looking at the baby, we were talking about Lily and how she only showed the choroid plexus cysts and the missing digit in her pinkie. Those are the ones that scare me, she said, because you don't know. And they don't know. So we go back next month for another ultrasound to see how the baby is progressing weight wise.

I'd be lying if I said I wasn't a little worried. There are days when I stand in the shower and think about it in a worrying type of way. And every time, the song "Trust and Obey" comes to mind, and I hear this still small voice that says Trust me. Whatever happens is for my good. That puts me at peace. . .for the time being. So why can't I just go past the struggle and instead fall into the arms that don't want to pull me under as my struggle might suggest? These arms only want to offer me peace. Why can't I just accept that?

Frazzled

2010-09-10T22:58:00.003-04:00

Is it sad that I was at such a frazzled point the other day that I took hope and energy from a VeggieTales song?

Lily got her 15 month shots last week. A few days after, she got a cold. Of course, we always worry with colds, so a lot of saline and nose sucks were under way. The little girl was miserable.

On Tuesday, Lily had an appointment with her new nephrologist. Our pediatrician sent her back to him, even though her next appointment with him wasn't until January, because Lily has had two urinary tract infections since June. He's considering putting her on a prophylactic antibiotic. Apparently, because Lily has the pelvic kidney and it sits lower than normal, UTI's just may become common. Hence, the need for always having an antibiotic in her system.

On Wednesday, Lily had an appointment with the pediatric surgeon to get her button changed to a bigger one. He wanted to wait until next month to change it out, but there had been a good bit of leakage that morning, so he replaced it--still with the same size button. We'll still change to the bigger size next month.

That afternoon, Lily vomited a little, probably because of the drainage from her cold. Then she spiked a fever of 102.4 that night and vomited as soon as I got her milk in her. While her fever was down the next morning, she was still vomiting.

The next morning, I made an appointment with the pediatrician and called pediatric surgery to see if this was common behavior that accompanied a g-tube replacement. It was not, so they told me to go to pediatric radiology after her pediatrician appointment and get a scan of the tube area done. The pediatrician could find nothing wrong with her, but prescribed an antibiotic mainly for what he deemed a sinus infection and then wrote a prescription for a chest x-ray (since we were already going to radiology) just to be sure no pneumonia had set in.

Three doctor's appointments in a row. Three times driving to downtown Charleston, which is at least a 30 minute drive. Three times interrupting the not-so-strict schedule of lunch and naptime for Gabriel, and if that isn't enough, making him sit in those sterile rooms, usually strapped in his stroller (unless there happens to be toys in the room for him to play with). I have to say he is such the trooper, though. Three times paying for parking that is not in our budget and humbling myself asking the doctors to sign a sheet for mileage reimbursement. It was more than I could handle that day.

When we got into the parking garage, Gabriel's VeggieTales CD was playing a song that we had sung at church camp, "Give me oil in my lamp." That song was a prayer in my heart. A plea, you might say. Especially the line, "Give me umption in my gumption help me function, function, function."

When we got to radiology, Lily was asleep. I was watching her sleep and noticed how labored her breathing looked. Fear set in. When they called me to check-in, the receptionist didn't know about her g-tube scan. She seemed to the point where she wasn't going to register us for that one, but she made a few calls. As she was making her calls, I was sitting there thinking, Woman, this is not my day to make a scene. If you don't let Lily get both of these procedures, you're going to hear about it. No, you're going to hear this little girl's LIFE story. And I kept thinking how I just didn't want conflict. I didn't want to be that crazy woman everyone stares at.

I don't like conflict.

I teared up and started crying. The lady at the desk asked me if I was ok. I nodded yes. Are you sure? Again, I nodded. Just overwhelmed? Yes, I nodded. So much for functioning.

Lily got both scans. And everything was ok from both. No pneumonia. No g-tube wrongly misplaced.

We came home and gave Lily pedialyte, which she kept down for the most part, and started the antibiotic. This morning, Lily woke up feeling so much better. The stuffiness is, for the most part, gone and she has kept everything down (even though I haven't given her milk yet). I'm not sure if the vomiting was a virus or just a reaction to the phlegm. I do know that every time she vomited, she either coughed or sneezed right before it happened. You'd think you could chalk it up to the sinuses, but she had a little diarrhea, too.

So many variables involved. Sinuses? Stomach virus? G tube? Trisomy 18 taking its toll? It's been a little bit of a scary situation not being able to pinpoint what's wrong with her, but it looks as if we're at the end of it. It feels good to know when you succeed in fighting a cold, especially when your child has Trisomy 18.

A Happy Heart

2010-08-28T21:15:00.003-04:00

Lily had her appointment with her new cardiologist on Friday. Again, we have been so blessed with the care we have received since moving to Charleston.

I think we tickled the cardiologist pink. I think she was so happy that she was the one who was able to give us the terrific news that Lily's VSD is almost nonexistent, that it's so small that blood is not getting through it. I've been waiting for this news for almost 16 months, and finally, I got to hear it.

That news is so good, that Lily won't have to go back to the cardiologist for another two years. Two years!

The only reason we would need to contact this doctor is if Lily would need to have surgery for some reason. Lily still has two other trivial holes in her heart, but lots of people have them, and they go through their entire lives with them. Lily would just need a dose of antibiotics before surgery to keep infection from getting into these holes and spreading throughout her whole heart.

I was concerned with the damage the VSD may have done. None, according to the doctor. Her heart is a perfect size and sounds great.

In essence, Lily's heart is healed. What a miracle!

God has been so good to us!

Dear "Nana"

2010-08-19T13:43:00.004-04:00

A comment from a reader, Nana: OMG'osh! God is sooooo good! Your family is just simply beautiful... from "A Few Pics" August 14, 2010

Dear "Nana,"
I don't know who you are, but I'd like to thank you. Thank you for the sweet comment, but thank you also for not even knowing that you would put a knot in my throat and bring tears to my eyes with the words you had written, and thank you for bringing such a beautiful thought to light at a time when I think I really needed it.

Too many years ago, I lost my "Nana." She was like a second mother to me, and I miss her dearly. Upon seeing your comment, my first thought went to my nana. I know, without a doubt, that she is up in Heaven, and I couldn't help but imagine that she was saying this to me: OMG'osh! God is soooo good! She would know, wouldn't she!?!

I've always wished that she were alive to meet Dave, because I know she would love him and be so happy for me, knowing that I have such a great husband. I believe she would be so proud of Rani and Autumn for their accomplishments, and she would delight with me in seeing them become such beautiful young women. Then there's Gabriel. She would think he is so precious and smart, and I can hear her laugh right now at all the funny things he does and says. And Lily. Oh, how she would have so much praise for our little miracle, and she would be so proud of all of her accomplishments. I've always wished. . .

You wrote your comment, and I imagined her saying to me Your family is just simply beautiful...

I needed to hear that from her.

Window shopping

2010-08-18T14:49:00.004-04:00

I am ashamed.

Quitting work to stay at home with Lily (and Gabriel) has definitely been worth it, but it has not been super easy financially. We make do, but not without sacrifices. Luckily, we had a little money in savings, along with frequent "surprises" in the mail to pull from during those months when we went "over budget." I try to have a positive attitude about it, recognizing that it's all for the very best, but there are days when I bemoan not having the courage to buy a pair of shoes or not really needing to buy a maternity outfit.

Then, just the other day, I hear about families living here - a child's room having nothing but a bed in it. A bed without sheets - just torn remnants of the plastic liner that comes on a new bed. I heard about roaches crawling around in broad daylight and broken pieces of furniture littering rooms in the house. I think the worst, though, is the concrete floor. I imagine this dull, hard flooring and wonder how much joy you can pull from that.

Yet I sit here in my carpeted, three bedroom, two and a half bath, two-story apartment. The one that has a dishwasher, a washer and dryer, our beds with sheets, more space than I need even when it might not be the amount of space that I want, and I wonder What in the heck am I complaining about?

I guess complaining about what we have (or don't have) is easy. . .until we see what life could really be like. If I think about it, I have everything I need, and even though it may not always sound like it, I am thankful. But when I certainly know it could be worse, that thought causes me to look around, suck it up, and stop wishing my life away on all that unnecessary stuff my longing heart window shops for.

I'm sometimes in that same situation with Lily. I see children with Trisomy 18 who are sitting up or walking or able to eat "normally" or who are reaching for their toys, and for a very quick moment, my heart wishes for more for her. But I know there are other children out there with her condition who suffer their own problems, many that are more severe than Lily's. That's when I stop and remember that I love Lily for who she is, not what she does or doesn't do, and I stop my longing heart from window shopping again. What AM I complaining about?

PS--I spoke to Dave about how we might provide families in difficult situations without hurting their dignity. We worry about the balance of helping others without insulting them. We have just received so much from friends and family, and we want to pay it forward to others who are less fortunate.

Perspective

2010-08-16T21:48:00.005-04:00

Over the weekend, we met some friends of ours at the beach. They recently moved to the Charleston area, and it was such a nice time to be around these friends of ours--Sarah, Ward, Ethan, Wyatt, (twins) and Sylvie. Sylvie is around three months old, maybe a little closer to four, but seeing her beside Lily really puts things into perspective. (Note: Sylvie is a cute, big baby, but she's not THAT big. She is THAT cute, though!)

A Few Pics

2010-08-14T00:09:00.003-04:00

Lily doesn't like the bright sun, but she loves the water. The waves scare her a little, but she relaxes as soon as they pass.

I cannot describe how much Lily adores her big brother. And he adores her as well. He'll just go up to her and cuddle with her. "She wants my 'battention,'" he'll say.

We went crabbing for the first time the other day. I had so much fun. Truly, it's better than fishing! I can't help but think how much of a little beach boy my little boy looks in this picture.

The first time we went to the beach, Lily fussed the whole time we were there. That was pre-thumb. Now that Lily's found her thumb, she uses it to our advantage!

The other man in her life whom she adores--Daddy.

Shock

2010-07-30T00:46:00.004-04:00

Lily had another renal ultrasound today. I walked out of that appointment, speechless, but tickled pink nonetheless. As the sonographer was looking at her kidney, I mentioned that they thought Lily had a pelvic kidney, in utero, but that a previous ultrasound (after she was born) had determined that there was no pelvic kidney, that Lily only had one kidney.

The sonographer said she'd give a look just to make sure. Sure enough, no kidney in the normal back area, but to my TOTAL surprise, she found that Lily has a pelvic kidney, fully functioning! I could not believe what I was seeing! Understand, Lily had an ultrasound when she was a few months old. There was no evidence of a second kidney. And now it's there! The sonographer said that she saw that Lily's known kidney was a normal size according to her age. That gave her reason to believe that another kidney was there. Otherwise, her kidney should have been bigger.

I know this sounds unbelievable. I still can't believe it. Some may chalk it up to misdiagnosis. It happens. I know what I believe. Praise God! But here's the rub: Lily's main problems included a VSD that is healing and giving the doctors a reason to believe that it will eventually heal itself and one kidney. Sure, there are other smaller issues, but do you see what I'm saying?! It is possible that these main problems will not even be there. If that's the case, and everything else remains status quo, our only other worry will be warding off sickness. Now, T-18 scares me. There is always that fear that some major organ shutdown or some other drastic thing could occur. We've got it good right now, but I'm always looking over my shoulder for that to change. Then I turn around and see this beautiful little girl, smiling and growing and being so precious, and I focus on today and what we've been given to be so, SO thankful for. It renders me speechless.

On a different note. . .please pray for Erika and her unborn little girl Hannah Joy. While an amnio recently revealed that Hannah does not have T 13, 18, or 21, there are some concerns, including a two-vessel cord and heart defects. Erika's blog is http://psalm139wonderfullymade.blogspot.com/. Please pray for this family as they deal with the uncertainty of what's ahead.

Results of the 1st Trimester Screening

2010-07-20T14:59:00.003-04:00

The 1st Trimester Screening cannot tell me whether or not my baby has Down Syndrome or Trisomy 18 or 13. But it can give me a risk factor.

They start by giving me a number based on my age. For Down, that risk factor began at 1 in 131. After the screening, my risk factor lowered to 1 in 1008. For Trisomy 18 or 13, my risk factor began at 1 in 95 due to the fact that I've already had a baby with Trisomy 18. After the screening, my risk factor lowered to 1 in 1881.

I know there is still that chance, but I like these numbers.

The Search for the Self Soother

2010-07-17T18:21:00.004-04:00

For fourteen months, we've been working with Lily to get her to self sooth. It's always been one of us rocking or me nursing or her temporarily finding her fingers, but nothing has calmed her. If we tried to help her find her fingers, she'd fight and fuss more. Those had to be on her terms. A pacifier never worked.

Now, after fourteen months, she has found the ability to sooth herself. Her thumb! For the past three nights, she's gotten a little fussy after her evening feed,but calms quickly by rolling on her side and finding her thumb. With thumb in mouth, we have been able to put her in her crib, and she has fallen asleep that way. No rocking, no nursing, no crying herself to sleep. Boy, her former OT (Meghan) would be proud!

As a matter of fact, she's been sleeping with her light off, AND she's been sleeping through the night. This is amazing to me. I hope it's permanent. Since her tube placement, she's really become such an easy baby to care for. After fourteen months of three hour sleeps here and there, I really need this.

If only I could control the urge to wake up and go to the restroom in the middle of the night. . . :)

Updates

2010-07-13T13:31:00.003-04:00

Thirteen weeks. That's how far along I am. Tomorrow I go for a first trimester screening. The screening will involve an ultrasound, where they will measure the the fluid accumulation at the back of the baby's neck (the nuchal translucency), and a blood test, where they will measure two proteins. Basically, they won't be able to tell us anything, but they will be able to provide a risk assessment for Down syndrome and Trisomy 18. According to the brochure, the combined testing detects approximately 85 percent of Down snydrome and 97 percent of Trisomy 18. Those are pretty good percentages and are actually better than the second trimester screening percentages.

Here's something I know. I remember going in for Lily's first ultrasound. It occurred around the same time Gabriel's was done. I remember thinking how small Lily looked on the screen compared to Gabriel. I just figured it was due to magnification. Maybe it was Trisomy 18. This time, the baby's length measured 12 weeks 5 days, the exact number Dave and I were using in our calculation. Just getting my hopes up, I guess. Unless we do an amnio or CVS, we won't know for sure until birth.

I'm trying not to be nervous and dwell on the fragility of this baby's life--of any baby's life, for that matter. But this pregnancy is certainly different from my other pregnancies. There was this invincibility before Lily. Not anymore. I now know that perfect pregnancies do not exist for everyone.

As for Lily. . .since her g tube placement, we have seen weight gain--she's now 14 pounds--, better eating of solids--she's up to about 25 bites on her best days, and a happier baby. As the previous post's picture shows, Lily is getting bigger. Oh, and that's not me. That's my friend Jennifer. We hung out with her family on the 4th, and I just couldn't help taking that picture. Lily was so content in her arms. In the past, I've always picked on Jennifer because Lily would fall asleep every time she held her--and it always seemed to be at times when we wanted Lily to stay awake so she'd sleep better at night. Lily is sleeping better, too. But it also helps that the place we live in now doesn't allow every little sound to penetrate our bedroom door. Lily will let out a cry here and there at night, but she'll go back to sleep.

Lily is also rolling on her stomach more and holding her head up really high. This is great to see because she hasn't had therapy since the end of May, and we've not pushed tummy time because of the button. Her rolling is telling us that she's ready to progress.

Lily also has a tooth! She got a bottom tooth a few months ago and chews on her hands nonstop. She's been drooling a lot, so I'm expecting another any time now. She's so cute with her bottom tooth. I just can't imagine her with a mouth full of them.

The button has given us a little concern. It's redder around the area than Dave and I like, but the surgeon seemed to think it was normal. Her pediatrician prescribed an antibiotic. We've also had a little granulation to deal with, where skin (?) grows up like a blister of sorts along the button. Silver nitrate fixed that, but it turned Lily's skin a blackish color around the button. Some of that is still there. Apparently, according to the pediatrician, it's an issue we're always going to have to deal with. It's a little frustrating because rotating the button is supposed to help with that. We do it and this granulation still occurs.

But really. What are we fussing about. Things are going so well I hate to fuss. Lily's gaining weight and happier. She's healthy. Right now, it's all good.

Wordless Wednesday

2010-07-07T22:49:00.004-04:00

A Breath of Fresh Air

2010-06-19T23:04:00.003-04:00

The other day, we had a meet and greet appointment with Lily's new pediatrician (Tracy, thank you for the recommendation. Dr. V is fantastic!) Dave and I never know how doctors are going to take Lily and her condition. Are they going to be like the radiologist who was so rude, or are they going to be accepting and willing to take on our challenges?

I can't say enough about Dr. V. He spent so much time getting to know us, and he was so excited about Lily. Truly, the guy was practically shaking--he just couldn't believe that a Trisomy 18 child would make it to 13 months. It was just so nice to see him recognize and appreciate the miracle in Lily.

The appointment was only a meet and greet, but he asked when we planned to set up a regular appointment. I told him that actually, I was going to make one for soon because I wondered if Lily had a urinary tract infection. She had had a small wet diaper that morning. Dr. V, after telling us how crazily booked his day was for a Thursday, put his schedule on hold and did a routine checkup. Then he had his nurses cath Lily. Sure enough, Lily has a UTI. She is now on antibiotics, so hopefully, she'll be better in the next few days.

As for her g tube. . .what took us so long to agree to this procedure? Actually, I know what took us so long, but wow! I'm nursing Lily maybe twice a day. She's eating every four hours now, but even that will be changing soon. I was afraid that she would be dependent on nursing to get to sleep, but that's not even the case. She nurses at night, but she doesn't fall asleep. I hold her and rock her for a few minutes, but then she starts to fidget. Once she does that, I lay her in her crib, she rolls over on her right side (her favorite!), and she falls asleep. Thursday night she did wake in the middle of the night, but I think she either had gas or pain from the UTI (if there is pain from that). She's been sleeping all night long, too. Oh, how I've needed this for a long time!

As for eating, she's made such progress! She now will open her mouth and take her food. At first, she would just sit there with her mouth open and make this awful whining sound, as if to say "what do I do with this? what is this in my mouth?" She still doesn't take enough bites to make a difference, but there's such pleasure in seeing how much she's progressed! Her therapists would be so proud!

It's all such a breath of fresh air!

Lily is home

2010-06-11T19:22:00.003-04:00

Lily is now home! The surgeons said she looks perfect, but we still have not heard back from the cardiologist. I should have called the cardiologist today, but it's been a whirlwind. Lily is tolerating her feeds, even though they are small--she gets 20 ml of breast milk and then nurses for her normal time. When she nurses, she's latched on for 30 minutes, usually, but she doesn't eat the whole time. Yes, I am not only the milk provider, I'm also the pacifier. I like that Lily finds comfort in me like that, but it's time to wean. I think we're going to take it easy this first week and gradually take out the nursing.

I'm just glad we're out of the hospital and Lily is doing well. Thank you, so much, again and again, for your thoughts and prayers. What a blessing you've been to our family!