Sunday, August 26, 2007

Family Fun

(This is being posted as Aug 26 - but that is the date I started it - It is actually getting posted on Aug 28)
On August 10 Dad, Mom and Hannah came in from WV, the next day Ezra and Daniel flew in from TX and CA. They were here until the 15th. While they were here we went to the King of Prussia mall and to a lake for a picnic. It was the first time the uncles saw JayDonn. On the 14th, my mom and grandma came in from OH. Lots of family in one house! Mom and Grandma yesterdat morning. While they were here we had tons of doctor appointments, I'll try to recap them.
  1. Sleep Study - My mom stayed overnight at CHOP with Dillon (they wouldn't let me have JayDonn over night so she stayed for me.) I am very proud of her as this was a big step for her. The results according to the tech would be inconclusive since Dillon has so many secretions. The Puml. Docs, however say he stopped breathing 6 times (before the tonsils came out it was 8) an hour. They have put Dillon on oxygen for at night. The first three night he didn't need it, but all yesterday and today he has needed it pretty much the whole day. (Josiah wrote more on the oxygen this morning so please read that post for more info).
  2. Josiah and I spoke with David Gibbs III on the pone for about an hour. He is willing to help us in any ways that he can. Ezra spent some time with him, which is how he knows about us.
  3. Neuro - He wants to have the EEG done to rule out seizures for sure. He doesn't feel an MRI is critical right now, but we may get one done depending on who does the EEG. David Gibbs had asked if he were given a "life expectany" for Dillon, so I asked the neurologist...loaded question - I know. Children with his disabilities live past age of 25 only 15% of the time. Usually lung or kidneys are the reason for the shorter life.
  4. Hearing - The cable for his hearing test was broken when she tried to use it so we could not run the test. Instead, the audiologist decided to run some other testing. For the first time ever Dillon's ears are testing as healthy. His ears are hearing now - but we still have no idea if his brain is hearing. It is like his eyes, they are healthy but his brain is not getting the information of what he is seeing. However, the last two times we tested his brain there were slight improvements each time so it is hopeful. She does not want us using the hearing aids until the next test. She has only had two people ever who have improved like we are hoping Dillon is. KEEP PRAYING! This was the only one I consider positive of all the appointments.
  5. Please read the previous post by my husband as far as our appointment in CHOP yesterday and a general summary of what is going on. I am so tired of all these doctors who see Dillon for 15 minutes telling me he is tight. Even his physical therapist is tired of hearing that, she sees him for an hour every week and knows that he is not tight all the time. We both think Dillon just fights the doctors. They are so abrupt with him and I don't think he likes them. This doctor even told us that in the future we are going to need to talk with him about botox injections to loosen the muscles. Dillon is not tight yet, they think it is a sure thing that he will be. I am not so sure. I think if we keep working with him and keep PRAYING for him he won't need any of that stuff!

Appointments with Dillon, now that he is on oxygen and all, it is getting harder and harder for me. I have tried asking individuals to go with me, but everyone has a busy life so it is hard to find someone who can take a day off work to help. I was getting discouraged from even asking since it is so hard for me to ask to begin with and then I felt even worse becuase I am sure people felt bad having to tell me they weren't able to go. However, Josiah suggested we ask Pastor for help finding people who would be willing to help. Rachel sent an email out for us. We are so thankful for those who have responded that they are willing to be put on a list for me to call when I need help. We especially want to thank Mrs. Y (who lives about five minutes from us) for her willingness to help me with any and all appointments that she possibly can! It is such a blessing to me. It is also a great lesson for me - to put aside self and accept help. But thank you Mrs. Y for your friendship already...I am looking forward to building a deeper friendship with you!

That's about it. Pictures are taking too long for me to get them on my blog right now, but there are new ones on our website. Click on the box on the left side to see more.

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