So, with normal test results, this brings us no closer to an answer but that's okay. We are going to continue to do what we are doing and pray she gains weight. Allie actually lost weight this past month - she lost 3 oz. It's not a lot but for all the calories she's receiving through her tube feedings, she should have gained and not lost. Allie is still not back up to her weight she was before we tried her tube wean this summer - it's just such a struggle for our little peanut to gain!!!
After talking to the team of specialist about her normal test results, Matt and I expressed our concerns about proceeding with her endoscopy and botox injection scheduled for today. We just didn't feel there was a good enough need to put her under anethesa again. It's never easy putting your child under when there is a need but I have been second guessing this surgery/procedure since it was scheduled. So, I followed my motherly instinct and expressed my concerns. Dr. Tipnis agreed to cancel based on our concerns.
Before leaving, Dr. Tipnis ordered extensive blood work so we headed to the lab. Allie's biggest fear is "men" and her second biggest fear is getting blood drawn. She screamed from the minute we walked into the lab till the minute we walked out. She did good though - she was just crying and screaming because she was nervous, scared and mad. As she get's older and understands more, all the pokes and prods get so much worse.
After her blood draw, we packed up and headed home. We got home yesterday afternoon and now we just wait for her blood test results. They are checking her CBC and all of her chemical panels. The Dietician there is very concerned that she dehydrated and somewhat malnourished. She is thinking this because she actuall lost weight. We'll see - I honestly think she's very well hydrated and her nutritional status is great. The blood work will show the true results.
So, back to square one and we will continue to chug along. Allie is doing great and so happy to be back at home. She hates the Children's Hospital and when we walked out of there, she said, "I'm never coming back here again". She's in control of that - all she has to do is eat orally - think she'll do it????
Here are a couple pictures of Allie getting her test on Tuesday.
|Allie loving her new bunny from the Kwick family - thank you!!!|
|Allie during her gastric emptying and intestinal follow through test|
|Back at the hotel after she got her blood drawn - very unhappy little girl|