Wednesday, April 28, 2010

A Good Birthday.


Kendall had two great appointments on her birthday yesterday. The first was GI. He wasn't convinced her arching was related to reflux. He agreed to start her on 20 g. of Nexium daily. The second was Endocrine. It lasted exactly 10 minutes! Her Hemoglobin A1C is perfect. We're doing a great job, and he didn't make any changes. yay! I love all our Dr.'s. Especially our Endocrinologist. He made it a point to say I know my daughter best, and should go with my gut! I asked him about the muscle biopsy to test for Mito and he also thinks it should be done. He suggested I have them do it and tell them I don't want to know the answer. Really? So, I'm still torn about that. I have on other Neurologist I am going to ask on Monday at our Spacticity Clinic appointment. This is the Dr. who told me when Kendall was really small, that no matter what...we should do things "for" Kendall instead of "to" Kendall. I'm interested in finding out what he thinks.
Kendall and I took a long walk this morning and visited my mom. She's still very, very, very sick. She looks and feels miserable. So please continue to keep her in your prayers. The Infectious Disease Dr. has ordered a bunch more tests to see if this could be something more than just typical side effects of the Interferon. It's a double edged sword for us. If it is something else, that just sucks....and if it isn't she may get off the treatments, and she only has a few more months to finish the cycle. Either way, her quality of life right now is not good. My dad, sister, and I are at our wits ends. It is exhausting fighting Dr.'s for answers. (trust me!)
This morning Kamden woke up feeling wretched. I made him go to school for his Reading TAKS test (in Texas this is the money maker for the districts. It is a terrible test which, in some cases, measures how well the teacher can teach to the standardized test. )I don't know what came over me, but my 9 year old who was already extremely nervous, (even though I knew he'd ace it) sick, and all I could say was "you don't have a fever, get dressed." As the day went on, and I began to feel guilty for making him suck it up and get out the door, I decided to make him an appointment with his pediatrician to rule out strep. Fortunately, all the tests came back normal and we left with 3 new allergy prescriptions for him! My poor child was red eyed, coughing, and cold sweating and forced to sit at his desk until the entire 3rd grade finished their tests, when he should have been resting at home. Ugh. They have the teachers, kids, and parents a nervous wreck about this test. It is definitely one of the things I don't miss about teaching 3rd grade.
So, after a bunch of Dr.'s appointments, it seems my trip on Friday is still a go! And let me just tell you...I am very excited!

7 comments:

Reagan Leigh said...

OK...I know you like that doc but that's ridiculous! Don't put your child through surgery for no reason. You definitely need to know if she has mito. There are vitamins that can help if that's the case! Some kids respond really well to the vitamin regimens...it's certainly worth knowing.

Reagan Leigh said...

And happy belated birthday to you little girl! So glad you had a happy one!

Bronx Cataldo's said...

Happy Birthday Kendall

Candace said...

Happy Birthday, sweet girl! Definatly worthy of dancing in the streets! Jocalyn, I know a few parents who were pushed into muscle biopsy and regreted all of it. Some got answers some didn't but everyone I talked to said it was terrible for their babes.

Karen Owens said...

Happy Birthday Kendall! Love this photo!

jennohara said...

Kendall is beautiful!! I dont know the whole "scoop" yet , but I'm planning on reading her entire story. I do know that she just had a birthday, so Happy Birthday, Kendall! How very blessed your family is!

ANewKindOfPerfect said...

Happy birthday Kendall! It sounds like her appointments went well. I sent my son to school recently when he said he didn't feel good, and then felt guilty all morning. He ended up in the nurses office and I had to go get him. Poor bub!

My Peanut had a muscle biopsy when she was about 18 months old. It came back negative, but then we found out it only tested for some mito things? We are currently waiting on a test to happen to determine my Peanut's diagnosis and honestly? I have procrastinated in setting it up for THREE WEEKS because I am so scared of knowing the results!!!