Thursday, September 25, 2008

Clue that it's time to loosen the straps


Abby was trying to buckle Emma in her car seat this morning (she's such a big helper...I don't say that enough) and with concerned frustration and a little sweat accumulating on her brow, she proclaimed that she just couldn't do it today. When I asked her why she couldn't, she replied "Because she's just too much of a fat girl. All of her fatness is keeping me from being able to buckle her."

After explaining that Emma will claw her eyes out if she says that in another 10 years or so, I pulled the tight straps over Emma's lasting baby squishiness with a grunt and a promise to loosen the straps later.Yes, that is indeed underwear on her head. She wore it all morning calling it her "new hat".

A little medical recap of this week: We were released from hematology yesterday! Woohoo!!! Although our hematologist was by far my favorite doctor personality-wise, it is nice to have one less specialist at this point. Nathan's absolute neutrophil count is finally normal and has been for the past 2 lab tests. She said we do not need to come back unless we start seeing his neutrophil count creep down again, which would mean that he could indeed be suffering from cyclic neutropenia...I don't think that is the case though.

On the day we were released from one specialist, we were referred to another: Genetics/Metabolics. We have had a couple of doctors make reference lately that it is indeed time for us to see them, and our pediatrician made the final decision yesterday and called in for the referral. Some new information lately has made us take a closer look at Nathan's organic acid panel that was taken back in April, and we are seeing some elevated levels that are usually indicative of mitochondrial disease and another that is sometimes indicative of a fatty acid oxidation disorder that inhibits mitochondrial metabolism. We hope that a geneticist who specializes in metabolics will be able to decifer what the spilling of these organic acids in his urine are pointing towards. We do know that all of what he is spilling is pointing towards an inefficiency in energy production, so that helps us know why he just doesn't seem to have as much long-term energy that he should and why he tires out so easily.

Regarding the immunology referral: we no longer have a pediatric immunologist at our hospital, so the rheumatologist has been taking all of the immunology patients. The poor doctor is stretched thin, so it is taking a while to get in to see her. Our hematologist talked to her yesterday about Nathan, and the rheumatologist is definitely wanting to see him. She said that he could either have an immune deficiency or an IgG deficiency, so we are having an extensive immune deficiency workup with lab work before we see her. Nathan is also being tested to see if he has any titers (antibodies) to the immunizations he has had previously. If he hasn't retained the titers, he will have to be re-immunized for each one until he starts to show them...that is, when we are given the green light for more immunizations.

The other great news is that his AFP (tumor marker) is starting to come down. It is still high, but coming down on its own. His liver just seems to be moving a little slower to get rid of some of these levels, but it is indeed getting rid of it.

We see GI and neurology next week. Busy times, as usual.

4 comments:

Jill Chandler on September 25, 2008 at 5:38 PM said...

Lose one, gain another, huh? I do hope the specialists are heading down the right track to solve Nathan's puzzle. I love all the personality oozing from his smiley face!

Emily on September 25, 2008 at 10:58 PM said...

I'm so envious of your capability to update so frequently! Everytime I come on you at least have a few posts to catch up on. You're good girl!

Loving the pics, as always!

Rodney Chandler on September 25, 2008 at 11:52 PM said...

I see the new picture on the masthead...and I think I see my man Nate crying, clearly because he is dressed in Gator Blue. That boy is a Bulldog if I've ever seen one!

~sydney~ on September 26, 2008 at 12:51 PM said...

HILARIOS AND ADORABLE are the words to describe your sweet kids!

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