Wednesday, April 15, 2009

Fun and Updates

I think I was destined to become the mother of a daughter because from a very young age, I LOVED to play with hair, figure out how to do it, etc. I have blogged about this before... but I would sit at the t.v. at night and practice on my own, hair, barbie's, dolls, my sister. Pretty much whoever would sit still and had hair long enough to "fix". I am so excited to show off pictures of Charlotte's first french braid. I took pictures of every angle since frequently after I do her hair, it is a big mess not even 5 minutes later. I wanted this moment to last forever! I can't wait for more fun do's.

I'm also going to take a moment to fill you in on the happenings with Charlotte. We have recently seen many of her doctors and come up with a new plan and new goals. She has fallen further off the growth chart according to her endocrinologist, and had some growth hormone testing done. They will be hospitalizing her in the next few months for a growth hormone challenge test to be sure she is producing enough. He GI Dr. and I agreed that if we are not reaching the goals for milk intake each day that we are to supplement using her G-tube. The first couple of weeks, she seemed to struggle to drink enough and I was using her tube several times a day, but currently, a switch of the cup has encouraged her to drink more and we are not using her tube because she is drinking A LOT! She drinks so much each day that she is waking up wet every morning, a side effect that I don't like. The good news is, she seems to be gaining weight? But she was also gaining a bit before we started pushing the milk so much. And, she continues to eat pretty good. Her blood pressure is still in debate, I have gotten a few high ones and a few normals... we will be seeing her nephrologist soon. Her cardiologist gave her a clean bill. And, Charlotte will be having an MRI of her brain and spine to determine when we will be doing her spinal surgery. And also eye surgery is scheduled for May 22nd. Wow, what a mouth full, and that isn't everything.
In short, we have a lot going on, and in the middle of all of that, therapy several times per week, swimming weekly and preparation for transition from First Steps into Early Childhood when she turns 3, I am returning to work next week, Chris has started a new program at Boeing, we have dentist and eye appointments for the two of us... and we are still trying to make time for fun too!
Ryan has also continued to make things a bit interesting himself, as he was always breathing quite heavy. He saw the cardiologist as well since he has a heart defect too. The hole is still present in his heart and he still has the narrowing of the arteries going to his lungs, but overall he is doing well from the cardiologists perspective, especially since he is having no problems gaining weight. However, he does have something called laryngotracheal malasia, aka, "floppy airway" which causes him to work harder to breathe at times. This is commonly linked with congenital heart defects and should resolve on it's own within 6-8 months. Our only other concerns with him is the fact that he seems delayed with holding his head and body movements. We are keeping a close eye on him and working with him daily, but if he doesn't improve by 3 months, he may have physical therapy in his future as well, says our pediatrician. So, please keep him in your prayers. He was premature... and is doing great at tracking objects and is very alert, he is just either lazy or laid back we think and may need more encouragement. Good thing is, I know a GREAT physical therapist already!
The Hawns

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