Thursday, August 6, 2009

what's going on

Not a whole lot new for us lately. I've been really bad about taking pictures recently, but will try to get some new ones up this weekend.

Rhys is doing fantastic! He is still off O2 and has even quit wearing it at night. Though I'd rather he did wear it at night. He started getting the cannula completely wrapped around himself, so I quit putting it on him. The pulmonologist didn't say to keep it on him at night so I guess we're okay there. I continue to spot check his O2 saturation and he is consistently staying 96 or better, with an occasional dip down a point or two. I still can't believe that! Even though he hasn't been off the O2 for long, I really don't know how we did it lugging the O2 tanks every time we stepped out the door.

Rhys has been making a lot of progress developmentally. We're still working to get him where he needs to be, but I see him do new things daily. His PT saw him on Wednesday and thought he looked great. He is grabbing for everything in sight these days. He mostly uses his left hand as a primary and then uses the right hand for assistance. His right hand is mostly loosely fisted, but so was his left until recently. He is really getting good at grabbing and holding onto things, but I am still worried about his right hand/arm. The brain is a tricky thing. Rhys's brain bleed caused damage, but to what extent he wont recover will not be known for a while. At his age anything is possible in that regard, thus the reason we keep pushing him. I asked his PT what she thought about it and while she can not say for certain what the mobility of his right side will be, she does not see the tell tale signs of stiffness, etc that is usually associated with permanent damage adult stroke patient often suffer. That is good news! All we can do is make sure he continues to use his right side and make sure he is grasping for things with both hands, which he does.

I've seen a great improvement in Rhys's trunk strength since I took away the bouncy chair and limited the use of the swing. With Rhys either sitting (with help) on his own, in his Bumbo, or having tummy time he has had a lot of opportunity to work those muscles! He is doing great pushing up on his tummy. He is still mostly on his forearms, but is able to hold the position for extended periods of time. He has also started scooting somewhat. The PT saw this yesterday and was really excited about it. So, he's finally starting to put more of the pieces together.

Rhys still hates the spoon. Boy does he hate it. I still try to give him any and every thing I can think of. Baby food, adult food, you name it. He had a little sour cream and beans at a mexican restaurant the other day and actually opened his mouth for it. That went south after he got beans "stuck" on his tongue, gagged and refused any more. He had ice cream a few days ago from a straw and really liked it. That is the strange thing, he has always been a great medicine taker and will almost always open his mouth for the syringe and now a straw. The speech therapist can't figure it out either. He moves food around like he should, swallows, etc, he just doesn't like to eat! She suggested trying to make our own baby food because she has known babies in the past who just didn't like canned food. That is my next undertaking. I have lots of free time don't ya know.

When school starts this fall Rhys will begin vision services through ECI. This is a 'just in case' given his brain bleed, ROP (that resolved on its own), prematurity, etc. This is a service provided for kids who need learning assistance because of vision problems. They help with things like enlarged text, special lighting, extended periods to complete assignments, that type of thing. It is obvious Rhys can see, but we figure any therapy for him is good therapy. I personally think the vision ladies are a little overzealous (they talk as though Rhys is completely blind), but if Rhys gets any benefit from it I'll deal with it.

Today I am: 1 year and 3 weeks old.
Adjusted I am: 8 months, 4 weeks and 1 day old.

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