Monday, November 28, 2011

Inspiring Story

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.

Sunday, November 27, 2011

So Much To Be Thankful For

 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.

Wednesday, November 16, 2011

Lily's New Diet

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.







Sunday, November 13, 2011

Two Visits

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.   

Thursday, November 3, 2011

Marriage Refreshed

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.

Monday, October 31, 2011

An Ugly Cold

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.





Monday, October 17, 2011

Then and Now

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. 




Wednesday, October 12, 2011

Playing with Sounds

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!






Thursday, September 29, 2011

She Takes My Heart


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 childhood game where the wind, cool against my face, tousles my hair, and I am a giddy schoolgirl 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

Thursday, September 8, 2011

The Cards I'm Dealt

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.

Wednesday, September 7, 2011

The Help

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!

Tuesday, September 6, 2011

For Caleb

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

Saturday, August 27, 2011

Financial Peace

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.

Saturday, August 20, 2011

Prayers for Caleb and Peter

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."

Wednesday, August 10, 2011

Salmonella

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.

Wednesday, August 3, 2011

Music to My Ears

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.

Tuesday, August 2, 2011

Survival

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.

Monday, August 1, 2011

Dread

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.

Friday, July 29, 2011

Bi-pap Blues & Other Goings On

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.

Friday, July 1, 2011

The Culprit

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.

Thursday, June 30, 2011

ER again tonight

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.

Wednesday, June 29, 2011

Updates and Reaching Out

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.





Tuesday, June 28, 2011

No Camp Again

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?

Monday, June 27, 2011

Camp--Days Four and Five

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.

Friday, June 24, 2011

The Climbing Wall

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.

Wednesday, June 22, 2011

Camp--Days Two and Three

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!

Monday, June 20, 2011

Camp Day One

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!

Sunday, June 19, 2011

Camp

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

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.

Tuesday, June 14, 2011

Tennessee Revisited

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.






Thursday, June 2, 2011

Pictures of Alice

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.