Wednesday, June 24, 2009

New Pics

See, we get to title this post "New Pics" because there's not a lot of news on the medical front. Insurance, medicare, and nitty-gritty who-pays-for-what/why-are-WE-paying for this matters are another story, but as far as Keegan's concerned, no news is good news. We are hoping to get our MDCP (medicare waiver program) coverage up and running in the next month. We made a huge step forward by scheduling his in-home evaluation yesterday. Now, we wait on official authorization from Austin, and scheduling the 24-hour nursing home stay that allows us to use this particular loophole. More on that when we get it scheduled. This program will allow coverage for an in-home nurse/attendant to help with Keegan's care when needed and a certain amount of the money can be used for his therpies and formula.

Yesterday, Keegan was evaluated by Early Childhood Intervention, a state-funded program for in-home therapy at discounted rates for children with developmental delays in cognitive, communication, physical, social, or adaptive skills. The team was here for 3.5 hours, and by the time they left, my house was a disaster area. I think almost every toy we own was out in their attempt to evaluate him, not to mention the mess in the kitchen. Of course, they came during Keegan's nap so that we could get the paperwork portion done without him running around. He woke up screaming, which he usually does not do. I run in his room only to discover that he had a mishap with his g-tube, and formula and tummy contents have soaked him and everything in his crib. I felt like such a pulled together mom, having my child evaluated in a diaper and Harvard tee! Oh well!

Keegan got one gold star in his ECI evaluation. His age equivalent for physical skills was at 26 months! Way to go, Bug! He was given bonus points for being able to walk backwards, scribble in horizantal lines, and walking up stairs normally, rather than bear-crawling. I know all the other children his age that we know do all these things, but I was happy that he scored so well considering he was stuck in a hospital crib for almost 9 months of the last year. The therapists rated him at 8 months for his communication skills. He only has two real words (hi and bye, and sometimes what sounds like "daddy"); he does not imitate sounds well, and he doesn't use his sign language unless prompted. At first I was angry that he was scaled so low because I know how smart he is. I've come to realize it just means that we have a lot of work to do. He has been kept away from other kids for so long and stuck in a hospital for so long that it put him at a disadvantage. I have every confidence that he'll be jabbering up a storm soon. It will just take a bit more work for all of us.

The ECI team will be back on Monday to go over their plan of treatment, and we should be able to start his sessions with them fairly quickly. We are still waiting on his plan from Baylor for feeding therapy. They may be the best at what they do in this area, but they are certainly earning no bonus points from me on coordination or communication. I've already left two messages this week. I know feeding therapy will be a very long process for us and that patience will be key. Still, we are so anxious to get started because we don't want to lose any more ground.

Next Tuesday, we draw more labs and see our immunologist here. She probably will see us briefly and have us come back after the lab results are in. Next Wednesday, I will meet with the chief medical officer of the Board of Trustees at the hospital to discuss the care coordination and communication issues that occurred with Keegan's care this past year. Keegan's case brought resolution of these type of problems which have been ongoing in the Children's family to the forefront. We are optimistic about the direction the hospital is taking on these matters and are eager to provide any insight we can to making care better for all patients. I would greatly appreciate your prayers for me as I prepare for this meeting. It is certainly an emotional topic for me, but a lot rides on my being able to communicate the issues at hand clearly and intelligently.

Lastly, we posted some new pictures in Keegan's June photo album and a new video. Please don't forget to check them out, and leave a comment or guestbook entry for Keegan. Your words and prayers mean so much to us. Can you believe we've been home for almost 8 weeks? Us either! Your prayers and encouragement have helped make it so. Thanks so much, and have a great week. Stay cool out there in the sizzling heat!