Saturday, May 24, 2008

Still Scratchin Our Heads




Thank you for all the support and comments since our last update. It is appreciated so much. Brady's pediatrician calls him a "puzzle". We are on a waiting list to see a specialist but addittional testing (including that for Celieac disease) turned out nothing abnormal. We are happy that he is a happy child and have faith that we will at some point have an answer as we continue with bi-weekly appointments.


We are finally enjoying some great weather up here and I am looking forward to the summer months with the kids. Today we broke out a t-ball set and Brady loved it. Funny though because he uses the bat as a hockey stick. When we were at the orphange he played with the hockey sticks the whole time and it is the only thing he will watch on tv. Mabcy a sign of things to come. I leave with some pictures and a wish for a very enjoyable Memorial day!


8 comments:

Tiger & Kar said...

Hi Amy - My name is Karyn. I've been following your blog for quite awhile and we have many of the same virtual friends (Becky & Keith, Carey & Norman, Sinzi & Mark, just to name a few). I think I left comments in the past but it's possible I'm just a blog stalker!

Anyway, I wanted to suggest you google and research something called Chiari Malformation. One of my co-workers has an 18 year old daughter who suffered throughout her childhood through misdiagnosis after misdiagnosis, until being correctly diagnosed with Chiari within the past year. Her symptoms were very similar to Brady's with the only difference being that they started when she was closer to 4 or 5, not as an infant/toddler.

From what I understand, Chiari can have different symptoms from patient to patient. Some suffer with balance problems, and others suffer from GI, digestion and weight gain problems like our friend's daughter. She had other symptoms as well.

The way her Chiari was finally diagnosed was through a very powerfulm much more detailed MRI than what people normally have for a standard MRI. Once the diagnosis was made, she did have 2 surgeries performed.

Her mom (my friend) is more than willing to share their story and speak with other parents who are struggling to help their kids. Even if it turns out that Brady does not have Chiari, perhaps speaking with her will provide you some additional comfort. I'll be happy to pass along her email address if you'd like.

In the meantime, here is a link to some good Chiari info for you to look at, but again you can also google it & read more

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm#102883087

I hope this helps,
Karyn

Michael and Carrie said...

I'm sorry that you all are continuing to have frustrations as you try to determine what is making Brady so sick. I hope that you can see the specialist very soon and that they can determine what is going on with his little body. I'll continue to keep Brady in my prayers.

Troy and Rachel said...

We are continuing to pray for Brady and for your family. I hope the doctors can find out something soon. However, Brady does look like a very happy little boy with you all. Please keep us posted.

Denise and Mike said...

We have Brady in our prayers. Hang in there, you are doing the right things. He does seem to be very happy. I hope the doctors figure it out soon so you can have some peace of mind and a solution1

Shane & Marie said...

I have been wondering about you lately. I'm glad you posted. I'm sorry to hear they still don't know what is wrong with Brady. I do hope they figure it out soon. Poor guy!

Joy said...

That is so funny. Hockey is a cool sport. I am glad that you are working through his medical issues.
Good Luck
Joy

Becky and Keith said...

You really do have the cutest kiddos! Brady's smile is contagious! I'm sorry you're still scratching your head. I can't imagine how frustrated you are! Keep us posted - you all are in our prayers!

MandyJo013078 said...

Just wanted to drop you a little note to let you know I was thinking about you!