We had our appointment today with the rehab docs and Oliver was a little charmer. He had therapy first and did so well!! He has been stubborn so far at Gillette, but today he rocked it! We are mainly working on tolerating tummy time and being on the floor. It is really hard for Oliver to be on his tummy because he does not have the strength (yet) in his arms to push up or his head to lift. So even when he tolerates it for 5 minutes we are proud. To some this may seem like no progress at all but for a kiddo as special as Oliver small little movements like these that we take as being easy are really difficult. Oliver is doing a great job and John and I could not be more proud of our little man. The best part of this last month is that Oliver has just been happy. As parents I think that is all we want for our children, happiness.
Okay, back to the doctor update. Special kids with brain issues often times have problems with muscles either being floppy (not much tone) or tight (too much tone). Oliver has developed some tightness in his legs and has a hard time extending them. We have noticed this as well and we will work on it in therapy and at home.
Oliver, at 24 lbs. is beginning to grow out of being able to fit into baby things, as you might imagine. Strollers are difficult and other things like bath chairs. At the end of September we will meet for a wheelchair fitting and some other adaptive equipment. I know that sometimes we see or hear wheelchair and do the "ah man, that is really sad," thing. John and I are actually happy about this next step and are huge advocates. At the way beginning we would have gotten sad at the thought, but that is passed, it is time and we just plain old need it. He has a hard time holding himself up in a stroller and will be more comfortable and happy. That is what it is all about, happiness =) That is why I added the Oliver smile picture. This doctor was pretty cool, she even had blue hair. Not the old lady blue, an actual blue streak! It's fun to get a doctor with some personality sometimes.
It will most likely take 3-4 months before Oliver gets his new wheels. It is a tedious process. You need an Occupational Therapist, Physical Therapist, Special Seating person, and the Vendor. Whew! Getting them all together is the first step! Then somebody (not me) writes it very specifically in a way where all points are covered, just so insurance will cover it. So lame, it would be a lot nicer if we could just walk to the store and buy one! I am sure there will be parts insurance won't cover, but thanks to that benefit, Oliver is covered. (Thanks again!) People don't believe us when we say insurance does not cover everything. Here is an example, Oliver has a feeding pump that allows us to set the amount that goes into his stomach. They cover the pump, but did not cover the feeding bags that the food went into. Oliver has to drink formula that is thicker, so he does not get fluid into his lungs and end up with a respiratory infection. They will cover the food part, but not the stuff to make it thicker so he does not get pneumonia. Strange!! (Luckily, he tolerates the cheaper way to make it thicker)
Oops, off the soapbox again and back to wheel chairs! John and I can decide between an adaptive stroller or wheelchair. Oliver will also start getting X-rays every few months of his hips and spine to make sure they stay straight and in place, another process that I guess is part of the game. Don't get us wrong, we are going to continue working on standing, taking steps, crawling, all of the normal baby stuff. That is in the long and distant future, if at all, but all of this stuff is just stuff right now. Oliver is happy!
