Friday, December 12, 2008

Cerebral Palsy

Mia has been a very busy girl with various appointments this week. The first appointment was her hearing test, she passed! She has to go back to check one more thing, but the equipment was broken, otherwise her hearing is where it should be for her age. She had her speech evaluation and that went good. She doesn't speak really, but her receptive language is very high. She is learning more signs to help communicate, but she is also starting to attempt to repeat words when you ask her too! The first one was 'NONE'. I was out shopping with her and I am addicted to buying shoes for her, so as usual we stopped by the toddler shoe section, they didn't have any that I liked. I proceeded to look in the women's section for myself. Mia pointed at a pair of shoes and lifted her foot (she wanted to try on shoes because she now is addicted to shoes). I said "oh no, these are too big, this is my size. We looked for shoes for you and they had none." Then she looked at me and said 'NONE" and I said "Did you say NONE?" and again she repeated NONE! It was great. During the ST eval she asked her what the dog says and Mia panted and the ST said good and how about woof woof? And Mia tried to say woof! She will be going at least 2 times a week for ST!!
We also will be having a teacher 2 times a week at the house. Her PT is two times a week and she has an T eval next week. Today was her neurology appointment. This was the first time meeting this neuro. Apparently she was unable to review Mia's medical records prior to our visit because of an input error. While we were at the appointment she figured out the error and reviewed the neuro report and MRI information. She said 'Mia has cerebral palsy. I can say that with certainty.' She went on to explain why she said it. I didn't even cry. I just listed and had no emotion. I mean the CP term has been thrown at me since she was 1 day old. I have been told most recently in September by her new ped that Mia has CP and then after he read all her medical records he came back and apologized saying he would have to agree with her others doctors and not give her the DX. Of course we use the CP dx all of the time, for therapies and equipment. The neuro said that 50% have CP kids have cognitive issues/delays, but she doesn't see Mia fitting into the the 50% that have cognitive issues/delays. She also said, Mia is going to walk, it's just a matter of time. She mentioned Mia was a bit tight, which was a shock to me. Nobody has mentioned her being tight since her NICU days. She is pretty loose and hypotonic. So, I am sitting here asking myself "Have I finally accepted it? Am I okay with the label being attached to my baby?" Or is it that I am so far in denial after being told before that she has CP by more than one doctor and then having that doctor come back and change is mind? I am just not sure. I do know that I have accepted that Mia would always use the CP label for services and I was comfortable with it. I know that the label isn't going to change who she is and what she is doing, I love her even more than I could ever have imagined.
For now I am going to roll with it and see how I feel. I know even accepting a CP dx doesn't mean that I am always going to be 'ok' with it. I know some days I will laugh and be thankful and other days I will cry and think 'wow this really f'ing sucks!'
I am happy to say on a family note that we (mike, mia, tara and the dog) are going on vacation to Lake Tahoe for Christmas. DH is trying hard to make up for his selfishness that went on for 7 months. He was present with me at the appointment today and is napping with Mia right now.


Kiera Beth said...

Hi Tara -- That CP diagnosis is a hard thing. We never had any issues getting the dx for Little Dude, but even now, I rarely use the term, other than when I am trying to get services. I am not sure why that is for me. I do agree with you that some days it is easier to accept the diagnosis than others!

I am SO glad to hear that you are going on a family vacation! That is wonderful that things are looking up. I was so worried about you this fall and so glad that the prayers are being answered

Popcorn House said...

I am with Kiera I don't really use the term too much. Everytime I have they haven't quite understood what I was saying. So now I say he has left sided weakness mostly and they understand that more. I have a freak out session about every three months still and probably always will. Maybe now that you have an official dx it will be easier for you.

Have fun on your trip!!!

Ellen said...

Hi! I just found your blog (family visiting today, so I actually have some time to myself, which of course I choose to use by roaming around the blogosphere, it is my new obsession). Mia is supercute!

When my son, Max, was born and he had a stroke at birth, we were told he was at risk for cp. I know in his early years I dreaded the diagnosis, but now he's 6 and though he has it, it doesn't bother me because "cerebral palsy" is such a broad term, it can mean so many different things. It definitely is a scary term, but as the years have gone on I think about it less. Mostly, I just focus on the stuff Max is doing. I did a post on the labels we call our kids, if you want to check it out.

Adding you to blog roll, it is so amazing to connect with other parents.


* ~ *Jessica* ~ * said...

Hey Tara- I have to say, since we were originally Dx'd with CP I had a little 'nag' that said nope, that's just not right. But, I went with it. I never accepted it and here we are today- with only the Lord knows what, begging everybody for prayers.
I am very happy to hear that Mike is there and that you all are going on a vacay for Christmas!!
I will keep you all in my prayers :)

* ~ *Jessica* ~ * said...

Update when you can Tara!

* ~ *Jessica* ~ * said...

Miss ya!

Popcorn House said...

Miss ya too! Come on updates, picture, videos!!! Get moving lady.