We have a new pediatrician in Pasadena that we like. She is very open to all of our questions and takes the time to talk about things when we have appointments. I never feel like we are rushed out of the room. She has referred us to Texas Children's for specialist (ophthalmology, neurology and genetics).
We met with the ophthalmologist in September and she said Kennedy does have some minor eye crossing called strabismus. It is not uncommon in babies, but she should have outgrown it by now. She is also a little more far-sighted that she would like to see, so we are looking at possibly putting her in glasses. We go back in December (maybe earlier if I change the appointment) to see where she is. If it isn't better then we are going to do the glasses in the hopes that it fixes the far-sightedness and inturn "forces" her eyes to uncross.
While Kennedy and I were on the plane on the way to Wisconsin in August a lady sat next to us and said, "Hey there little girl. You must be about 10 months old." I said she was pretty good because she was 10 1/2 at the time. She then goes on to tell me that she is a pediatrician at Johns Hopkins. Are you kidding me? What are the chances? So for the next hour we talked about Kennedy and the things she could and couldn't do as well as her trip to Northern Minnesota that they were going on. She recommended 3 blood tests (2 for muscle enzymes and one for vitamin E). She gave me her card with phone number and email and told me to let her know if I needed any help with anything. Super nice lady! We had those 3 tests done when we got back and they all came back normal. I emailed her to tell her the results and she actually wrote back to me and again told me that if I wasn't happy with the specialists we have to let her know and she would work any connections she had.
3 more things to check off the list. Kennedy's current diagnosis is benign congenital hypotonia (low muscle tone that she was born with that isn't causing her harm). Unfortunately, this condition is a diagnosis by exclusion. There isn't anything that says this is what it is for sure...we just have to rule out other things. It can be frustrating because we are constantly wondering if there is another test we can do to rule out something else. Hopefully our appointments with neurology (Oct. 21) and genetics (Dec. 9) can help us with this. We would love for nothing more for it to be benign congenital hypotonia that she will grow out of with the help of physical and occupational therapy.
I really think that God moved us to the Houston area to get the help that Kennedy needs. The physical therapist already has her doing things she was never able to do before, we have a pediatrician that we like and Texas Children's is one of the top hospitals in the country.
Speaking of therapy...she is doing really well. She was never able to do this before. In the picture the therapist is helping her with her arms, but most of the time she is able to push up on them all by herself if we hold her hips. This is a big accomplishment for her!! Of course, she always has to show off for the camera.
We also do a lot of baby sit-ups with her to strengthen her abs. Just yesterday she started tucking her chin when we do them. This is something we have been working on since the beginning. It doesn't sound like a big deal, but try to do a sit up while keeping your head back. She was making it a lot harder on herself than it needed to be. Now that she is tucking her chin she is working on those ab muscles around her rib cage which will really help her sit up better.
We have also been doing hip raises. This week she started understanding when we said 'up' that we wanted her to raise her hips. Yeh!! This made up very happy that she was comprehending things. What a smart little girl!
As of now we are doing PT twice a week and occupational therapy once a week. Occupational is very similar to physical at her age, but OT will work more on her fine motor skills like picking stuff up with her fingers and bringing them to her mouth. We have a speech evaluation in November. She 'talks' but isn't consistently saying things like mama or baba. Here is a little video on her talking to me after she ate.
Part of OT is hand/eye coordination. Who knew a balloon could be so funny and helpful at the same time. :)
She is eating some big girl food now, but isn't really feeding it to herself. I usually "help" her pick it up and bring it to her mouth. She does fine with the chewing and swallowing, just can't get it there by herself. Of course, she does have 8 teeth so I'm sure that helps.
Now that she is 1 we have moved her to whole milk and seems to be doing okay with it. We have had a couple big spit-ups but not too bad. Yea for not having to buy formula anymore!!
One of the things that we found out in the MRI she had this summer was that she had low mylin (fat around her neurons). The more mylin you have the better the motor skills. They can't really tell if her motor skills are low so her mylin is low or if she has low motor skills because her mylin is low. The doctor told us that DHA can help develop mylin so we have tried to find foods that have DHA in them. Formula was her big source of this, so now that we moved to milk I had to do some research. I searched for toddler foods with DHA and found that Horizon makes an organic milk w/ DHA. Bonus, except that it is more expensive (still cheaper than formula though)! They also make a yogurt called yotoddler that has it as well. Plus a lot of the organic Gerber baby foods have DHA in them. I think we have her covered now. One of those things that can't hurt and hopefully will help.
So that is where we are for now. Hopefully by Thanksgiving and Christmas when we see a lot of you she will have a lot more "tricks" to share with everyone.
Here are a few more pics since her birthday.
