Friday, January 6, 2012

A red letter day


Yesterday was an incredible day...long and exhausting, but pretty incredible. Nate had back to back appts with our surgeon and our neurologist, and with the neuro appts being notorious for taking fo-flippin-evah to be seen, we logged in a little over 5 hours at our med plaza. It was one of those days that we have every once in a while where it hits me that my son is such an amazing trooper. He hung in there for several hours without complaint or whining...granted, he slept for a couple of hours, but I was pretty proud of the little guy at the end of the day.
When I think about the appts he had yesterday, I just smile. I've mentioned lately that the little man is doing amazing right now, and it was great to see the reaction of both of his doctors yesterday when they witnessed the exact same thing. From an outward view, Nate is literally doing better right now than he has ever done. I mentioned to both of our doctors yesterday that we are having to learn how to parent a boy right now. Nate has always had days or times where he feels great and has good energy, but they were always very short lived. We were mostly used to an energetic kid one day and then the same kid laying or sitting around all day, being very low-keyed for a few days. Lately, he has had incredible energy day after day, and we are trying to figure out how to parent a rough and tough, tumbling, rambunctious little boy now. I love it. Its amazing what good nutrition and not feeling so sick all the time has done for him.
It was great to see our surgery team again yesterday. Nate was funny and ornery and active and just full of life around everyone. He truly loves our surgeon and his entire team...literally jumping up and down with excitement when I tell him he has an appt with him. We found out yesterday that Nathan is the youngest patient ever in the US to have had a gastric stimulator placed. (In Europe, one has been placed in a 2 year old, but Nate is the youngest here.) I am constantly amazed at how God continues to bless us with amazing doctors who are on the cutting edge of information, research and treatments, giving Nathan a remarkable quality of life amidst his struggles. This stimulator has been life altering for the little guy.
It was good to see our neuro again as well. And it was really great to witness his reaction in seeing Nathan as he proclaimed that he has never seen him look this good and be this strong. Nate jumped into his lap with my phone in hand and proceeded to show him several funky pictures of me that Nathan and I had taken when bored one day and altered with a fun app. You know, pictures of me with a big nose or square head or bugged eyes. Its actually quite fun to take hysterical photos of yourself when you are waiting to pick the kids up from school. Doesn't everyone do that? I was also quite fun to witness the chuckle from our normally straight-faced, proper neurologist.
We did discuss Nate's poor reaction symptomatically and metabolically to anesthesia each time he goes under and some of the abnormal labs the little guy has right now, but all of those concerns will be addressed at our upcoming mito appts in Houston. Our neuro did confirmed that Nathan seems to have scoliosis. It is something we have been aware of for the past few weeks through PT, and we are working at trying to strengthen the little guy's trunk as best as we can. Nate has always been weakest in his trunk, so we knew that this was a possibility, but we did not expect him to start exhibiting curvature this soon. We wonder if the weight of the stimulator and the fact that he seems to guard it a bit is causing the shift?? Regardless, there is not much we can do right now other than try our best to help strengthen those muscles.

So, it was a good day...a good week. Nathan and I will embark on our journey to Houston tomorrow morning. I enjoy taking this trip with him. He's my good little traveling buddy. We look forward to seeing the docs in the mito clinic and spending good quality time with several friends.


2 comments:

Clara-Leigh on January 7, 2012 at 10:47 PM said...

I am in tears at the wonderful improvement in this beautiful BOY!!!!!!!! Keep 'em busy, little buddy!!!!!! Wish we could meet up with you in Houston!! We were scheduled for this week but are backing off and probably changing doctors to Dr. S in Seattle, sooooo much closer. We will still have to fly, but a quick 1 hr flight as opposed to an all day ordeal each way. Prayers for you guys tomorrow!!
Hugs,
Clara-Leigh

Jen on January 8, 2012 at 5:25 AM said...

Yay Nate! I have been so excited each time I read, to hear how well Nate is doing lately. It's absolutely amazing. Have a great trip to TX!

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