Wednesday, October 28

The good.... bad.... and ugly

The last few days have been very busy. I had set a goal of blogging everyday in the month of October for the Down syndrome challenge.... but heck, life is challenging enough! And once again each day brought challenges. God has placed some amazing people in our path these past couple of days and even with the extreme challenges, we have been able to get through most of this pretty well.

Yesterday, Hannah and I spent the day at Children's getting some of her painful tummy issues diagnosed. She is usually a healthy 15 year old, but lately things just weren't right. A few of the tests revealed simple things that Hannah could change to help manage her tummy pains. This was good! Nothing drastic. My daughter and I enjoyed great Seattle Chinese food and lots of conversation. She is a typical teenager though and was embarrassed frequently by me. I sure do love her though!

I met with our FRC (family resource coordinator) at the beginning of the week, she is helping our transition from the birth-three program into the school district preschool (she helps us with alot more than that though) for the twins. I asked for the meeting because so much of Tommy's health has changed this month. I also asked to meet because there was a recent court ruling in Washington state from a suit brought by local families to enable a choice of where their children receive special education services like PT, OT, speech, etc and the court ruled that this should be able to also occur in private religious schools. I asked our FRC to explain how that would look for us if we were to choose a private school for the twins which might enable smaller class sizes and more individualized instruction. As usual, she was extremely helpful and I was glad that I shared my honest anxiety over keeping Tommy healthy. Tearful and honest. Our FRC shared that the preschool will have a medical assistant there in the room just for Tommy and another boy, the ENTIRE preschool time. Nebulizers, inhalers, and bolus g-tube feeds will happen at preschool! With Tommy and Liam in the class, there will be approximately nine kiddos with one teacher, 2 assistants, the medical assistant plus a sign language interpreter. We decided to postpone their attendance until January to make sure every detail is worked out before they go. But we meet in the classroom on November 10 to get more of a feel for the setting. And then start the IEP. This is very reassuring for the twins safe transition to preschool. That is good!

The bad news is Tommy's sleep study was evaluated to a priority for pulmonary dept at Children's. The results are between moderate and severe sleep apnea. An average for kids to hesitate breathing during sleep is 1.5 times per hour. Tommy's average was 42. His airway just keeps collapsing. It's not his adenoids or tonsils, they are normal sized. So we go back early next week to get fitted for a cpap machine. I cannot even imagine Tommy allowing a cpap machine on. But then I cannot even imagine what might happen if we don't.

With Tommy's current health situation his PCP is submitting a request to our health insurances to cover Synargis injections for Tommy this winter. Immunology here in Bham and Pulmonology both wrote separate letters of endorsment for the immunizations agains RSV. This is one of the bugs that has placed Tommy in the hospital both winters with pneumonia. Even though he doesn't meet the age requirements for Synargis vaccinations, he may qualify due to his lack of immunity. Fingers crossed for health insurance to cover those few thousands of dollars in request.

My mental state is just plain ugly lately. Even with a strong faith, daily devotions, exercise and eating good foods, I'm going crazy (slowly but surely). I desperately need a break. My mom is coming up in November to stay a night and I think that will help. Colin and I will get out for a movie and dinner. If anyone reading this who cares for kids with special healthcare needs wants to share ways to stay sane..... please, bring it on! I'm a worrywart by nature and a crybaby. Not good personality traits lately.

Tommy Adventures