Her Superhero

Please help me with this project

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

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

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.

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!

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

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

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

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