Wednesday, February 18, 2009

I need more hours in the day

This week has been cra-zazy busy in regards to unpacking, washing copious amounts of laundry, and wiping the constant stream of gooey nastiness from Nathan's face. Thankfully, I think the antibiotic is finally starting to work on clearing his ears, though the poor kid is still operating on a short fuse these days. Who knew that ear infections offered lovely side effects such as mammoth tantrums, complete orneriness, and down-right refusal to sleep from the hours of 1 to 3 am. Needless to say, we're all in great moods around here. Care to visit?
After a very long hiatus from our plan to do "school" with the girls a couple of days a week, I decided to dive right back into it again this week. The girls love it, and I love being able to watch the light bulb of knowledge go off in their little brains from time to time. Plus, I feel like we are finally spending some good quality time together again...something that was kind of lost in the shuffle of biopsy, trips to Kentucky, Christmas, Birthdays, etc. over the past few months. The topics of interest this week: the human body (they got a kick out of the fact that the bodunkadunk is actually a muscle, and in Abby's terms "Mama's is the biggest muscle of all!"), trying to write letters that don't end up being 2 feet tall, keeping our gum in our mouths, and loving each other more and screaming at each other less. Next week, we are focusing on why it isn't nice to make fun of Mama's "big muscle" that wiggles when she walks.
We are meeting with Nathan's neurologist tomorrow morning to discuss mito in depth. We are going armed with an enormous list of questions, and he is also going to give us additional precautions and treatment suggestions. One of the things we will discuss is whether we need to travel to visit a mitochondrial specialist once a year or so, or whether he feels comfortable taking on Nathan from here on out. We also hope to get word tomorrow afternoon whether or not Nathan qualifies for a very interesting study on mito taking place here at Shands. All of the docs participating in the study are having a conference call tomorrow morning where they will discuss Nathan's case to see if they want him part of the study. This is very exciting for us, as we will have the opportunity to meet with the mitochondrial researcher here if Nathan is accepted for the trial, along with numerous other specialists and researchers who will be such a help to us along this journey. I won't go into much more detail until we know more, but if you will, please pray that Nathan is accepted into this clinical trial.


Erin on February 18, 2009 at 5:27 PM said...

I love your writings. And your photos make me cry. Come to South FL and be my photographer. You are my photo hero.

~sydney~ on February 18, 2009 at 6:53 PM said...

We will be praying for you guys about Nathan. Looove the education going on at the ferrell house haha!

Anonymous said...

OOOHHH, Amber. You are right in line with my class. We are also studying the human body this week. My favorite is a paper I hand out that has the skeleton of a boy, then the lungs of a boy and then the chest of a boy complete with nipples. That always brings up good conversation.
Love, Amanda MCCook

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