Sunday, November 13, 2011


Well, that week went fast!

Biggest things we have been dealing with in Ayden Jane over the past 4-6 weeks. (loong time) Is a yucky nose thing. It started a ways back as a cold. After a couple of weeks we took her in and the antibiotics loosened up a ton of... okay I won't go there. Still, even after the antibiotics were done we were/are left with a yucky nose. It is all nice and clear and no fever or anything. Ayden Jane has also slowly returned to herself with personality and behavior. Trouble is, still the runny nose cough...

I guess we will head back to the pediatrician before long if AJ cannot finally put it behind her. grrr. As far as the very slow recovery in energy, metabolism, personality... Dr. Miller has given us a script of cortef to try if (and we all know I mean when) she gets sick again and cannot seem to rebound.

Also, I have decided it is time to check gh levels. I can't pinpoint why, but last I was at our local endo we felt it was too soon to check them but that they would likely need a check before I returned. The past 2 increases I knew by looking at AJ it was time. This time I am really not so certain, but she is just growing up so fast and I can't read her as well as when she was little. We will also check carnitine levels to see if the changes we made in April corrected the carnitine deficiency. I added some acetyl carnitine to the carnitine fumarate we were giving her... Also we will check thyroid since she was borderline in April and she is high risk both from family history and PWS. Finally, Dr. Miller asked us to run a cbc but I am not sure what that is for other than just a general check.

On another front, Ayden Jane rides horses. It is therapeutic horseback riding and is hopefully keeping scoliosis at bay. Her horse for the past year has been Tamara. Tamara got a cold about the same time that AJ started with one, but last Tue. when we went we found out that Tamara died. It is a longer story than that, but that is the end result. Now, combine this with the fact that AJ cannot wrap her brain around the death of the father of one of Mckenna's good friends. I still haven't told AJ about Tamara.

Don't judge. This is the conversation I had the same day with Ayden Jane about L's dad. Mom, where is L's dad? Me: He is in heaven with Jesus. AJ: Can he come back and visit L and give her a hug? Me: No, but he will watch L grow up and smile at how funny she is. AJ: Why does he live in heaven now? Me: because he died. AJ: Just because he 'di' he has to live in heaven? Me: yes. AJ: Mckenna 'di' but she doesn't live in heaven. Me: Mckenna didn't die. Do you mean like in the video game? AJ: No, Mckenna 'di' and she still plays with me and gives me hugs. Me: When did Mckenna die? AJ: you know, when it was hot outside Mckenna 'di' in the pool. Me: (finally catching on) Mckenna diVe in the pool. L's dad dieD. That means he is dead. AJ: Oh, you mean like the dead bug?...How L's dad get dead?... yes, I spared you many laps before I ever caught on to dive and yes, there is what felt like another hour to the conversation where Ayden Jane used the word dead about a million times... Longest car ride EVER.

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