A New Toy

Kinsey found something new to play with in the last few weeks - her tongue! She sticks her fingers in her mouth all the time trying to grab it - slippery little thing doesn't cooperate much though. It's really cute, but it's also a developmental milestone - since she knows it's there she can learn how to control it, which will help her with eating and moving the food around in her mouth. The speech therapist said it was a good thing. The speech therapists have also been impressed with Kinsey's interaction making noises back and forth at you and she's starting to listen to voices more and respond to you calling her or making a noise.

The Physical Therapist brought over the Gate Trainer Walker that she would like us to get for Kinsey and we gave it a try. Kinsey seemed to like it, but she couldn't get it to move because she was trying to lean forward against it to move like she does in her Jeep walker, but this one doesn't work that way. I can understand what the therapist was saying about her having to learn the right way using this. I checked with our insurance and it is covered (at least somewhat) so we're going to order one soon. Here's a picture of what the walker looks like (ours will be a little smaller and in pink of course):

This weekend is our 1st wedding anniversary so Jamie and I are going to Silver Springs for the weekend and Kinsey is going to stay home with Pop-Pop (he is coming over to our house to stay with her this time). I'm sure they will have fun together :)

That's it for this week - here's a cute picture of Kinsey playing in her chair (with the table the therapist is letting us borrow):

Silly girl with her leg up on the table!

14 Months!

Kinsey is now 14 months old! (technically this happened last week, but I forgot to mention it).

This week we got the results of Kinsey's blood allergy test - it turns out she is allergic to cow's milk and dogs. We knew there was a problem with milk because we changed her over to Soy formula at about 2 months old and that cured the colic. But Eczema is a symptom of a milk allergy.
So it sounds like we will have to continue with the soy-based or dairy free products for her. It turns out milk is one of the two most popular allergies for infants (eggs is the other most popular). They say most kids outgrow a milk allergy by about age 5. The doctor is sending me some information on foods to avoid, alternatives, etc. as well as some info on reducing/avoiding pet dander from the dogs. She doesn't have that much exposure to the dogs since they're not allowed in the back half of the house by the bedrooms and she only plays on the floor on her own mat, not on the regular carpet where she would come in contact with the fur. But we've also never noticed her having a reaction to them either.

Kinsey's Jeep walker really seems to be helping her a lot. Since she's figured out how to go forward in it, she takes more steps when we hold her arms to help her walk without the walker! She really seems to be figuring it out :)

I think that's it for this week. No new pictures - sorry :(

Fun "Walking"

As I mentioned last week, Kinsey has really figured out how to walk forward in her Jeep walker. She's even good at turning corners. Here are a couple of videos of her "walking": http://youtu.be/GJkxTS1lRDE and http://www.youtube.com/watch?v=cAxQ01LUJMA&feature=youtu.be

The therapists are not fond of the walkers and jumpers because they teach babies to lean forward when they're walking and tilt their pelvis, then they have to relearn to walk the right way. They are ok with her playing in them, but don't want us to use them too much. Kinsey's PT suggested we may want to get her a Gate Trainer, basically a walker like elderly people use, but really tiny for her. She is going to bring one over in the next couple of weeks for us to try out. In the meanwhile, she brought a toy shopping cart over this week and Kinsey reaches right out to grab onto it and can pull herself to stand up and hold on standing! She did really well with it! That's good for her to learn to stand and walk on her own, but also good for her arms.

We did go to the Outlet last weekend to get Crocs for Kinsey to wear over her new splints. They work really well.

We also had the appointment this week to get new hand splints. I wasn't real impressed with the options they offered. It really seems like the doctors think the therapists can do more with the splints than they can. Anyway, they're going to try something similar to the first hand splints we had - a soft glove that will fit over her palm and thumb with a separate "sleeve" that will slide over the middle finger and velcro to the glove. This is different than before because it's just for the one finger and because it's not attached to the glove part, which will make it easier to get on her. We should get it in about 2 weeks so we'll see how that works.

Kinsey is doing better eating this week. We changed her feeding schedule so she only gets a bottle morning and night and eats solid food the rest of the day. It seems to be working. We also found some new foods that are higher in calorie that she really likes - Mac and Cheese, Risotto and Cheese with Veggies, Vanilla Custard with Banana (all pureed baby food).

That's it for this week. Here's a cute picture of her taking a nap on the floor - she was playing and just quietly went to sleep on her own:

Another Surgery in Kinsey's Future . . .

This has been a busy week! Kinsey had her first appointment with the orthopedic surgeon on Tuesday, which was very interesting. He did xrays of her hands, feet, hips and neck. He said her hips are fine (apparently sometimes Trisomy babies hips get loose, which is interesting because her hips were tight when she was born), but anyway, he said they look good. He also said her neck/head tilt has nothing to do with her spine, it's just torticollis (a twisted neck in which the head is tipped to one side, while the chin is turned to the other) and can be addressed through stretching, which we can work on her with PT. This has already improved on its own since she was born.

Obviously we were most interested in what he had to say about her hands and feet. For her hands, he suggested splints for her middle fingers only. When we had the previous hand splints made, they said they couldn't make something for just one finger and had to address the individual finger by making a splint for the whole hand. Neither of those worked and she doesn't wear either one of them. This doctor gave us a referral to a new OT that can make something for a single finger. We have our first visit for this next week.
For her feet he recommended serial casting, which has been mentioned before. He showed me the x-rays and explained that the bone that connects her leg to her foot is on an angle instead of being flat and that is the problem. Serial casting would involve putting a cast on each leg up to her thighs for 4-6 weeks, then operating on her feet, then new casts for another 6-8 weeks, and finally back to splints for a while. He recommended getting started on this right away before her feet and the bones grow any more, but with her cleft palate surgery already scheduled for the end of Feb., we will wait until after that. So it sounds like once we recover from the cleft surgery, we'll be preparing for another one!         

In the meanwhile, Kinsey has been wearing her splints and the PT suggested we find shoes to fit over them so she can still have traction for walking and standing. I previously bought some sneakers, but I had to get such a huge size to fit over the splints that they were rediculous. I found a pair of sandals that fit better, but the therapist mentioned that Crocs tend to work really well, so we're going to the Outlet tomorrow to see if they have some that will work.

We also had Kinsey's annual review with Early Steps this week. That's the goverment program that helps us with access to and payment for her therapies and other things (like they helped pay for her splints and hearing aid). Nothing real significant came out of that appointment. She has been doing well and accomplishing some of the goals we've set for her so we made new ones for the next 6 months. We're going to continue with PT, OT and Speech weekly. I'm also going to look into taking her to a PT facility where they have lots of equipment that might help her more than the stuff the people bring to the house, but Early Steps can't help us with that, it would go through our insurance, which I have to look into further.

We've been having a lot of trouble feeding her this week. She was eating really well for a while, but now she will only eat a tiny bit at a time then refuses to eat any more. We're not sure if we've been trying to feed her too often so she just getting full really fast or if there's some reason (like something to do with her cleft or her teeth) that is stopping her from eating. Not sure . . .

On the fun side, Kinsey is getting really good at moving her Jeep walker forward! We lowered the front of it and for some reason that has made all the difference. Now she practically runs across the room! And she's managed to take her new skill of opening the cabinet and combine it with the walker, although the walker is in the way so she can't open the cabinet all the way and get into any trouble! Here's a video - for some reason she was reaching across herself to open the cabinet and just kept hitting herself in the head with it - silly girl :)  http://youtu.be/MJUBcqZHvec

Apparently the picture I posted last week of her sleeping in her crib (from the night vision camera) didn't show up. Here's a picture I just took, but she's not sleeping this time!
                                  

And here's a cute picture of her in a new outfit from Aunt Linda :)

That's it for this week . . .