Saturday, October 07, 2006

Just the facts

We had a whopper of a pediatrician appointment yesterday and I was given so much information that it will be impossible to both provide you with said information and also whine about said information....and because I can't whine to you if you don't have the information...I am providing you with the lovely information in this blog and I'll come back to whine later. Don't know I'm good for it.

Let's start with GOOD news for a change. KayTar has grown 2.5 inches and gained 3.6 lbs since we switched pediatricians (the end of July). Something tells me that if StupidPedi had been doing his job, she wouldn't have fallen off her growth chart in the first place. She is now almost back on track and we can go down to one PediaSure a day, instead of two. YAY!

Poor baby got 3 shots because StupidPedi let her get behind...and she has to get 4 more in 6 weeks!

She is being referred to an ophthalmologist because certain metabolic diseases show up in the eyes. (after she told me that, she looked at me and said "This is what we start trying when we don't know what else to do.")

The neurologist has requested blood work to test for lead poisoning. The pedi has requested uric acid blood tests. So on Monday we get to go back to get blood drawn and I HATE it. Honestly, I feel like an awful mommy for days after. It’s been the worst test by far...even worse than the EEG.

She asked me about high cholesterol in our families, and so I think maybe after this next round of visits/testing, we may get referred to a cardiologist in case the episodes are being caused by lack of blood flow to the brain.

She told KayTar that she is the biggest mystery she's ever encountered as a doctor. Josh said if they end up discovering some new condition he wants it named after KayTar. *lol* She also said at her child's last PTA meeting, she pulled aside another parent who is a neurologist to quiz him about KayTar. She's really got them stumped!

She said she can't give me a 100% on it not being a tumor, but things are looking good for it NOT to be a tumor. Steady head growth, nothing major on the CT scan, ect. She said we're still waiting on the MRI before we are 100%, but she was able to reassure me some.

After we go back in 6 weeks, she will present her to the chief of pediatrics at the Children's Hospital. She wants all the info she can get before that so she has her bases covered. In 6 weeks we will have been to the Feeding Disorders Clinic, had the MRI, finished all the blood work, seen the ophthalmologist; that coupled with the neuro's information, the CT, and EEG, she should have quite a bit by then. We'll just be lacking the Genetics appointment which isn't until January 2007.

She said KatTar's muscle tone is good, but she still seems to have a lot of muscle weakness, if it wasn't for the loss of words and the episodes she'd think it was a musculoskeletal problem...but throwing in the other stuff, it's not a fit. She said most kids who are behind like KayTar are really floppy, but she has good muscle tone, she just can't seem to coordinate things properly.

Josh has been asking me if she'll ever be able to talk (especially since we're working on sign now he is wondering if this is permanent) and so I asked the pedi for him and she said she can't say. She said she might never talk...but we don't know. She said that will be the hardest thing if they can't find what it is that is going wrong, we'll never know what she's capable of or what to expect for her.

I asked if she will be prone to losing her sign words like she has lost spoken words and she said that it will be interesting to see, because she's unsure because she doesn't know why the words are disappearing.

So we don't know a whole lot still, just more testing and waiting. But the MRI is the Friday after next, and that will be a load off.

And here's a picture of my beautiful girl, just to lighten the mood.


Anonymous said...

It sounds like everything is moving in the right direction - but boy it must be hard to go through all of it. The uncertainties and unknowns are so hard to live with.

As usual Kaytar is utterly divine :)

Beck said...

Hey, our girls are together in the Pediasure club. My little munchkin is still drinking two cans of that stuff a day.
It makes my heart hurt to think about what you're going through, but everything sounds like its going in a better direction now. She's a beautiful little girl.

Andrea said...

She's cute. I'm glad you got a new doc. I can't imagine going through all of this. My prayers are with you.