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Monday, May 18, 2009

LaRae is fighting the battle of Arthrogryposis at 6 months old.





LaRae is learning to sit in a high chair and is doing therapy while in it also not so happy about. She also was refitted for her splints not happy at about that. She's our champ. Keep up the good work.
We love you Baby Girl!!!


















This is Marnie LaRae's P/T and Dr. J. LaRae's Doctor for the Arthrogryposis at duPont.












Marnie and Renie are the two P/T and O/T Therapist at duPont. We always see Marnie. Renie always comes along because she thinks LaRae is so dang cute. Renie deals more with the lower limbs. But LaRae seems to attrack everyone. We always seems to hear that she has such great thighs.



LaRae went back down to duPont on May 8, 2009. It was a very long day. We got really great news about her wrists because they are responding to therapy really well. They didn't change the degree of the angle in the splint. They added padding which puts her wrist a little past the neutral position which is really a good thing. Her nickname is Houdini. She gets out of everything, even splints. She figured out a way to get out of her night resting splints, so Marnie, her P/T, fixed her night resting splints. So far she can't get out of them. That's the good news.

We weren't so lucky on her elbows or shoulders. I thought I was getting range of motion in LaRae's elbow only to find out it might be the wrong movement, which could in the long term damage her cartilage in the elbow. So now we have to have the elbow ultrasound to see which way the elbows are bending and if the tendons are going to release at all. They are leaning more towards tendon releases. Her shoulders are showing real problems for her too. They rotate inward so much the back muscles are stretching over the shoulder blade. The upper body is mincing a spinal cord injury even though she does not have one. But that's how the shoulders are presenting at this time. Hopefully with some new P/T exercises we can get her shoulders to start going in the right directions. We have 6 more doctor appts over the next month to go to. LaRae has major GI problems, so we have to see a GI doctor at duPont. They think maybe she has a milk allergy. She is going for genetic counseling, she has to have an ultrasound and refitting for splints. She will be seeing Dr. J again for the Arthrogryposis. We are going to CHOP on May 22 to see Dr Finkel for her muscles.


QUINTIN and the KIDS HIKING

Quintin decided to take the kids and LaRae for a hike around the field. It was LaRae's 1st big day outside. We had to try out the new backpack. She loved it. I can't wait until she can grab Quintin's hair and pull it. Q and McKayla aways did that when he would put them on his shoulders. LaRae is such a stinker in every other way so far. I'm sure she is going to pull all kinds of stunts that none of the rest thought of. She's always getting into trouble, at least as much as a five month old can get into.






Here are just some cute pictures of her in her bumbo chair. Sorry I couldn't turn them. I still think they are cute.



















EASTER
Sorry it's taken me so long to get my Easter pictures on here. My batteries went dead on Easter of course. We spent Easter at Quintin's brother Jesse and wife Sue's house. Quintin's whole family was there and we had a great time. There was 4 generations of Quintin's family there and 8 out of 25 them were very loud kids in a small house.































2 comments:

  1. Everyone looks so handsome and pretty on Easter morning!
    I love the hiking pictures!
    I'm glad LaRae is getting a little better and sitting in her high chair! You go Girl!!!

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  2. i didn't know u had a blog. awesome.

    ur kids r so big & adorable!!!!

    ReplyDelete