I know it's been a while since our last post, and not a whole lot has changed since then. We've had my Mom staying with us, which has been a huge blessing. She's really been helping us out a lot over the past month - either watching Alex for us or helping out around the house - it's definitely nice to have her with us. And of course Alex loves having her here (instead of just seeing her on the webcam).
I'd love to say that Alex is just "growing like a weed" but that's not really the case, as she hasn't been growing at all for the past 7 months. And her weight hasn't changed since she was 9 months old. We had some blood work done & consulted with Endocrinology and it turns out she has a growth hormone deficiency. So we've added hGH to her battery of daily meds, which we're hoping will help significantly with her muscle tone as well as physical development.
This may sound like another setback, but to us it actually feels like a big step forward in getting to the root of some of her problems. If the hormone deficiency is causing her weak muscle tone, then that could explain her difficulty with head & trunk control as well as swallowing and aspirating (and the myriad of respiratory problems). And the hGH treatment can be a wonder drug with very little side effects in cases where the body really needs it. So let's hope & pray that this really is a big step forward. I guess it takes several months for noticeable growth improvement, but we're hoping to see increases in her energy level sooner than that. Either way, we'll be sure to keep you updated.
Much love,
-Jimmy & Nicole (& Carol)
7 comments:
Hi Nicole and Jimmy,
Love the new picture of beautiful Alex!! Glad they have been able to identify the reason for lack of weight gain etc....
I will be praying for your wonderful family!!
Love,
Lisette
I am glad you guys posted again. I have been wondering what you guys were up to. I love seeing Hope's smailing face.
aunt Genell
Was just thinking about you guys. Just got done taking donations for Alice's 36 hours for kids at Children's Hospital . Couldn't help thinking that Alex was at Children's last year at this time. It's amazing how time flys. Your journey with Alex inspired me to donate my time for an amazing cause! I've always known how important Children's Hospital is but knowing how important Children's is to Alex really hit home!
It was really rewarding being a part of something so big & important! Hopefully we can get together soon. It's a blessing that Alex has only needed to make short trips to Children's! Let's keep it that way. Always thinkin of you, Jenene ;)
Hi Nicole, Jimmy and Alex
I am so glad there is a little semi-good news to move foward with.
Hopefully now Alex with start to grow in all areas better!!!
Nicole you look good! I sure hope life is being kinder to you and a little less hetick!
Alli's new shunt seems to be doing good (knock on wood). She is unfortantly getting UTI after UTI.
(6 since Oct.) She also still has C-Diff we can't get rid of it ahhh!! I am still having problems with PT for her OH WELL!!
But at least Alli is happy and doing well at preschool 2days a week for 3hours SHE LOVES IT!!! She just turned 3 and if I can find you e-mail I will send some pics
I am praying for you all
Keep smiling!!!
Amber
Her beautiful hair is growing!:)
We've been 18 lbs since 7 months... (so for 5 months)... hummmmm, interesting! He looks healthy, as does your little Alex, though. Might have to ask about an HGH test too!
I've been thinking about little Alex lately. Glad to here you are getting some answers! Miss her sweet little face!
The Fugitt's :)
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