Tuesday, February 17, 2009

What next?

Wait. I really don't want to know.

Today Kendall's new Neurologist's nurse called back to tell me the results of the blood tests. It turns out the Factor V (which I referenced before could be the cause of the stroke...but I "doubted" it would be so easy) was abnormal. They are now referring us to a hematologist.

I have mixed emotions about this. I am so frustrated that it has taken so long for this test to be done. It seems to me that when the first Neurologist saw her brain and mentioned the word "stroke" they would have immediately run some sort of clotting tests. I'm definitely not a Dr. but to me that made sense. Why then, did they not do the tests back when she was 5 months old? I assure you it was not from a lack of me asking. I have a little book that I jot all my questions down in for the Dr.'s. I have the same question written down at 6 different appointments with 6 different Dr.'s. None of those Dr.'s ever ran the test. There is something wrong here.

Second, the thought that if they caught this earlier, Kendall's stroke could have been prevented by me taking an aspirin a day?? takes my mind in a direction I don't need to go in.

There is a possibility I could be the carrier and Kamden could also have the disorder too, it just didn't effect him the same way. There is also a possibility Justin is the carrier. I'm sure we will be getting blood drawn soon as well. Like we have time for 3 more appointments! gosh.

If we know the cause of Kendall's stroke we have a better chance of knowing whether or not it could happen again. Plus, it will be important to know if Kendall ever has surgery, etc. Also, I guess it could affect our health as well. I don't know. The only thing I do know is I AM SICK AND TIRED OF FINDING OUT ABOUT NEW MEDICAL ISSUES I NEVER KNEW EXISTED. I don't want to read anything else. I don't want to speculate anymore! Everything we have been diagnosed with seems to have ridiculous odds. 1/3000, 1/20000, 1/a MILLION??? I need to play the freakin lottery.

We had OT early this morning, and blind services visit after that. Then we had Speech come to the house and they couldn't work with her since she hasn't had her swallow study. Hopefully by next week we will have been worked in for the swallow study. Tomorrow is another busy morning, then the EEG on Thursday. I need a vacation.

I'm off to bed.

3 comments:

Jessica said...

I am giving you guys a GREAT big hug in spirit, a Charley hug...that means you get squeezed so hard that you have to "make noise"!! Daddy would squeeze us till we grunted! I wish I could give you one for real. I'm praying for you and love you all!!

Cjengo said...

I am so sorry. Factor V is actually the only thing we have all encountered that is more normal. Like I was saying I think ALL women should be tested for this prior to getting on birth control, and prior to getting pregnany. I am on a campaign trail now. I am so sorry!!!! I know they will take good care of your little Kendall, and get you on the right plan of action for her. I am sorry this was so frustrating yesterday. I am on my band wagon today because Jude is still not sleeping from the seizures. Hang in there girl, and hopefully we will relax some on Sat night!

Dawson said...

God bless you guys. what an ordeal. Know we are praying for you.