Blog Archive

Tuesday, July 13, 2010

Elizabeth Update

I keep waiting for a break in the action so I can send an update, but the action never stops around here and the news is piling up, so I'll just jump right in!

Elizabeth has a ton of appointments this month. We had 5 last week and we have 3 more this week, as well as a check up for Hannah. Here's the brief synopsis:

~After meeting with her Endocrinologist, we've agreed that now is an optimal time to begin treating Elizabeth with growth hormone shots. This will allow her to reach her fullest height potential before her growth plates close. We've gotten preliminary labs and a bone age scan, and are now waiting for insurance to approve the treatment.  We'll get trained on administering the injections later this month. Because Elizabeth has been a champ through all the procedures we've had to put her through, we're imagining that she'll get used to the shots quickly…but you never know when she might have reached her limit, so we'd appreciate your prayers for an easy transition for all of us.

~She's stable as far as GI is concerned, and we've got her next endoscopy scheduled for the end of September.

~ On Wednesday we made another attempt to get an accurate audiogram and were partially successful. Elizabeth and I had been practicing at home using chocolate candies to try to eliminate her false positives (she'd figured out that they wanted her to put the toy in the bin when she heard the "beep beep beep" so she'd just wait a sec and regardless of if she heard something, she'd put the toy in the bin...hoping to get the whole thing over with sooner!)   After assessing that she still had too much gunk in her left ear to get an accurate test, we went ahead and tried the right ear using our "chocolate candy game", and she did beautifully! So we finally have an accurate baseline for her right ear and the report is good! She has normal hearing in 3 out of 4 tested frequencies and is only mildly below normal on the 4th.

~Then today we visited ENT to continue working on getting her left ear cleared out. She still has a persistent fungal infection in her canal, but the good news is, it looks good...still "funky", but not any worse than a month ago. Because her ear looked good, and with a successful audiogram under our belts, we decided to try for the left ear and she did great! She gave an accurate test we were thrilled that the results were the same as for the right ear!! She has normal hearing except for 1 frequency! So between her two ears, her hearing is pretty close to normal!! Praise God!

~We'll see her dentist tomorrow and Cardiology on Wednesday and both of these are just check-ups, so we don't anticipate any big news from them. However, Elizabeth will get a dental cleaning, which is pretty traumatic for her, and an EKG, which as the last procedure in a LONG list of appointments, is also pretty stressful. So please pray for her state of mind and ability to know that these won't hurt her.

Finally, we saw our pediatrician on Friday and after some neuropsychiatric testing, he confirmed what we'd already suspected: Elizabeth meets diagnostic criteria for an "Autism Spectrum Disorder". She falls into the "high functioning" category that was previously called Aspergers.  We've suspected that her brain was processing the world differently, so frankly our reaction to the news is mixed. I'm relieved that the issues we see aren't "my fault" for lack of insight or instruction. This does, however, bring a bunch of new questions and issues to the forefront and we're struggling to process them in the middle of our chaotic lives. Would you join us in praying for wisdom and direction and lots of peace?

In other news, Hannah will be 2 months old on Wednesday and is doing great. While things are still pretty crazy, it has been a complete blessing to have her join our family. Matt leaves for a Neuromuscle conference in Naples, Italy on Thursday and will be gone for 9 days. That means the girls and I will be "winging it" at home, missing him terribly and surviving on quesadillas, grilled cheese & carrot sticks for a while. (that sounds like complete nutrition...doesn't it??) We'd appreciate your prayers for smooth travel for him and for a grace-filled week and a half for us. Please pray that Elizabeth remains healthy while Matt's gone (I'm NOT ready for a hospital stay!) and that I miraculously have joy, patience and energy even on little sleep.