Thursday, February 26, 2009

And the appts continue...

So, I woke up even sicker today and boogied my behind on over to the doc mid-morning who prescribed some antibiotics and nasal spray for the nasty sinus infection that has decided to make camp in none other than my sinuses. Who would have thunked?! By this evening, my voice was in GONE! Poof. Nada. It was then that I realized how much I truly do talk in a day's span and instantly felt a little sorry for my dear hubby. The lack of voice grew on me after a while as the girls started their routine fight every half-hour and came to me to settle the disagreement, to which I just shrugged my shoulders and pointed to my speechless mouth. This gesture alone caused them to turn to one another and *gasp* settle the fight themselves. Now, why didn't I loose my voice 2 years ago when the sibling rivalry started in the first place?
Hopefully today will be the last of the medical posts for a while...until all the referrals for the other specialists start making appts in the next few months. I really am a little afraid of what our calendar is going to look like over the next couple of months due to the influx of referrals we have recently received.
Today was Nate's 12 month well visit with our pediatrician...or as we named it: the "not your typical well visit"well visit as we discussed a plan of action for Nathan's care. It was truly an outstanding appt! Our plan right now is to have Nathan receive yearly blood draws and urinalysis to check for organ dysfunction, get an annual echo and ekg, annual eye exam and hearing test. She is making the referral for us to see an audiologist for these hearing tests, as we know that mito can affect hearing sometimes. She is also going to help us apply for our state's Children's Medical Services that should pick up some of the costs our insurance doesn't, especially since this is a chronic illness with many medical expenses.
She said that putting Nate on PediaSure was a good idea since his weight percentile is so low. We have a theory on why Nathan looks better in the weight department than what it says on paper...muscle mass is heavier than fat, so since Nathan is low-toned in his mucles, they just don't weigh as much as most kid's. Granted, that's just a theory, but it sounds pretty good, huh? Abby is the skinniest kid ever (she wore Emma's 3T pants the other day as capris...they totally fit her perfectly in the waist), but she is also the most muscular 5 year old I have ever seen. Even though she is skinny-minnie, she is in the 65% for weight.
Our pediatrician heard Nathan's heart murmur again. He had the murmur when he was a newborn, but we thought he had grown out of it like most newborn's do. It is probably still a completely innocent murmur, but it's good that he will be seeing a cardiologist soon to have a better check.

Speaking of Cardiologists, Hailey (my neice) went to her cardiologist again yesterday, and they are bumping her heart surgery up to in really soon. The cardiologist was going to meet with the surgeons, so we'll know more of an accurate time frame fairly soon. Keep her and Ashley in your prayers, please.

And we still haven't gotten the final word on whether or not Nathan will be accepted into the mitochondrial study here. They are waiting on the last of his tests (his skin fibroblasts that Dr. Shoffner sent to Duke) to see if he meets their protocol or not. Hopefully we will know more about this in the next week or two.
The past few weeks have given us a lot to digest, and while we are still trying to find a good method to juggling the round of doctor visits, we are finally settling into somewhat of a rythym. For the past year, I've been saying, "I'm looking forward to our lives returning back to normal" while thinking of the timely-scheduled days of a year+ ago when the most exciting thing we did was push back naptime an hour so we could meet a friend at the park. I've realized that those days are indeed over, and we have created a new normal around here. And while it can get super crazy busy at times, we still have just as much fun day-in and day-out as we did when we lived that seemingly perfect-structured life. I'm starting to get a bit used to flying by the seat of my pants. It's not easy all the time, but we're hanging on and enjoying the everyday moments.


AmyG on February 27, 2009 at 4:43 PM said...

I'm sorry you're sick! I hope you get to feeling better soon! Our house is full of sickies, as well, thanks to the lovely flu/cold that Emily brought home.

Sounds like you have lots of plans for Nathan... praying for you all!

skye on February 27, 2009 at 9:01 PM said...

Hope you feel better soon - meds should kick in quickly.

And you're right about redefining normal. It's a process. And life is just a beautiful - just a little different.
Praying, praying.

Anonymous said...

I have the exact same theory about the weight!!! You've seen Asa's checks and even while he was FTT, he had the chubby thighs! I don't know if the theory holds water but count me in!

Kim and Asa

Lisa on February 28, 2009 at 8:25 AM said...

Sorry you have been sick, get better soon! We have fought it here also.

Praying for Nathan.

Lisa Q

Michelle Garvin said...

I'm sorry you are sick! I hope it passes quickly! I know how all those annual appts can stack up and make life very busy. Praying he gets into he study!

TracyVDM on March 5, 2009 at 12:08 PM said...

I think your weight theory is definitely right! Isabella is a bean pole but is SO, SO toned and muscular (I am jealous...and boy are we in trouble if she still has this bod in 10 years!)...and is also 65th percentile for weight.

...and can you beieve our babies are ONE????

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