Wednesday, November 9, 2011

An update


I have figured out that "down time" just doesn't happen when you have 3 active kiddos. We are busy...really busy...but its a good busy. Just when certain extra-curricular activities end, they seem to be replaced by some other avenue that keeps us running around like crazy. Unfortunately, the incessant "going" coupled with the time change has worn on the little guy lately, so I am hoping that we can get things to slow down just a bit to accommodate his long nap schedule once again.
I love this time of year. Thanksgiving feasts at the girls' school, shopping for Christmas gifts, birthday cupcakes and pajama days at school, and our big 2 week trip up north is all coming in the next few weeks. I can hardly believe it...nor am I ready for it in the least!!

As for the quintessential update, everyone is doing well. Abby had an awesome report card, incredible end to her soccer season, and is looking forward to being 8 years old in a little over a month. 8. Seriously? 8?? She still reigns supreme as the first-born pleaser. Barring all the incessant 2nd grade humor that isn't funny whatsoever, this gal is a pure delight.
Emma is her sweet ole' stinker self. She is such a sweet heart and so well-behaved at school. She is reading like a champ now and really excited about learning anything she can get her hands on. She's still absolutely hilarious and quite a stinker at times. That kid can go from making me laugh to driving me crazy in about 1.28 seconds. She's one of a kind. And she will be 6 in two months.
The little guy will be 4 in almost three months. Seriously. Where have the past years with my little baby gone? He has demanded that we stop calling him the "baby", to which we have sadly obliged. But he's totally right...he's not a baby at all.
The little man is doing well. He has adjusted to this permanent stimulator well. We have an appt with his surgeon next week, where I think he *may* need a little adjustment to get the little guy to eat more, but he is doing really well overall with very few of the symptoms of gastroparesis that he used to encounter each day. He still gets at least half of his calories by tube feeds, but he is tolerating those quite well. This stimulator has been truly life altering for Nate.
We rescheduled his appts in Houston for January and were able to add one more appt for the week...for a cardiologist specializing in autonomic dysfunction. This doctor has found some interesting information regarding certain mito patients, and we hope that he can play a huge role in Nate's care as well. Specifically, we pray that he will be able to explain to us why Nate's body responds with exhausting retractions, tachypnea, and metabolic acidosis when he is off his O2 for a prolonged period. Its a phenomenon that has had so many of his doctors baffled his entire life but willing to give their theories to why these symptoms occur. However, if testing can show that it stems from a cardiac issue, there is the potential that it can be corrected. And if it can be corrected, there is the potential that Nathan can come off his extra O2. I can not explain how incredible this will be if it is the case. Equally, I can not describe how hard it is to not get our hopes up that a "quick fix" can get rid of his extra tubes. We are so optimistic but trying to be realistic at the same time. But our prayer is that this cardiologist can help Nathan. We'll know more after our appts in January.
So, that's about it here. Nate has an appt with surgery next week...pulmo and GI next month, with neuro following closely behind. And then lies the marathon of appts with the docs in Houston. The little guy and I will leave the week after we arrive home from our Christmas trip and be gone the full 2nd week of January. Although it will be a hard and long trip out there, we will have the wonderful privilege of reuniting with a few of our very close friends while there. We can barely wait!!
 Yes, it will be a busy few months around here.

1 comments:

Kyla on November 10, 2011 at 5:45 PM said...

Glad to hear everyone is doing well! Such a great series of photos, too. :)

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