Wednesday, February 25, 2009

Party hard, man!


The little dude partied me out yesterday, and I ended up hitting the hay at 9:00 (I feel like such a grown up for going to bed so early). When I woke up this morning, I had an explanation for turning it in early...with a barely audible voice in between sniffles, I gave Jay the head's up, "Ugh, I'm sick". Who knew that if you abused your body with weeks of intense stress and pure exhaustion, that it would start to give up on you and make you start to take it easy?
Nathan's birthday started with a very frustrating trip to see his GI doc. Mitochondrial Disease has had a lot of research done in the past few years, and most doctors are not up to date on the new info, precautions and practices with these kids. The first time we saw our GI doc, I mentioned that there was suspicion that Nate had mito, and he said that since his point mutations (genetic tests for MELAS, MERRF, and NARD...3 strains of mitochondrial disease) were negative, that he definitely didn't have mito. I should have known then to look for another GI doc because that guy obviously had no clue about the disease at all, as those were just 3 of numerous types of this disease. (I know that is confusing, and I hope to write more on the genetics of this disease in the future.) But I gave the doc the benefit of the doubt and didn't let first impressions get in the way of trying to figure out if he was right for Nathan or not...obviously I should have. After 3 frustrating appts with him, we are going to make sure we are scheduled with a new doc in that specialty from now on.
I did meet with the Physician's Assistant they had, and I loved her greatly! She was caring and concerned and said that she wants to help us along this journey. The highlights of the appt (while trying not to dwell on the frustrating parts)... they are a little concerned about Nate's weight. He definitely has some fat reserves (gotta love those squishable thighs), but he is still sitting at the 3rd% for weight. A lot of mito kids struggle with weight often, so they want us to start giving Nathan some PediaSure to help plump him up so we hopefully won't have to worry about lack of weight in the future.His reflux is finally somewhat under control, but we have to change his motility med (erythromycin) because it is widely considered to be mito toxic. Since it is working so well right now and we aren't seeing any problems with it, the doc doesn't want to change. Unfortunately, it can (doesn't always, but can) cause damage that we won't see for quite a while, and we just can't be sure if it is causing additional damage to his mitochondria or not, so we really need to try something different. On the other front, the other drug that is usually prescribed for delayed gastric emptying can cause pretty tough neurological side effects. The plan of action right now is to do a gastric emptying scan on the little dude to see if we can possibly get away with no meds right now...here's hoping that is the case!!
We have also been referred to a hepatologist to form a plan of action regarding his liver. For the most part, we just need to figure out if there is any involvement with his liver that we need to pay more attention to and see if we can just get away with having the usual yearly liver function labs done when we have the rest of his yearly lab work done for monitoring this disease. And we were referred to our Early Intervention Program for some OT for the little guy. So, big appt. Tomorrow is his 12 month well check with our pediatrician where we will have LOTS to talk about regarding Nathan's care and trying to formulate a plan to be proactive as much as we can with this disease.After the rough start, the rest of his birthday was a blast! We had a little party for him at our friend's house and got a kick at watching destructo demolish a cupcake. He ate his entire cupcake and then helped himself to someone else's. After scrubbing him down, he walked into the kitchen and proceeded to eat the crumbs in the trash pile on the floor. At least now we know how to put weight on him!
We had another party at home. It started with new sand in the sandbox to replace the green, moldy mess that was growing in there previously. Note to self: always put the lid back on the sandbox...especially during the summer rainy season. (Yeah, it's been nasty for a while.) I then made the birthday meal that I always make for the kids' first birthdays: skebbi. Or actually, spaghetti...or whatever your kids call it, cause its always cute to hear them say it. And then he devoured another cupcake and made an interesting view of the bathwater afterwards. Sand, spaghetti, and cupcakes can do a number on the bathtub drain and leave a very interesting greasy ring around the sides, FYI.
I think Nafey boy enjoyed his birthday festivities. He has definitely enjoyed playing with all of his cool new toys today, and I can see him eyeing the left-over cupcakes on the counter. It was a good day all in all...a good day indeed.

6 comments:

Lisa on February 25, 2009 at 10:52 PM said...

Glad you guys had a great 1st birthday for your precious boy. Praying for the right doctors and treatment.

Lisa Q

AmyG on February 26, 2009 at 12:18 AM said...

Sounds like a great day, minus the doctor stuff. I hope you find a better GI.

Anonymous said...

Happy Birthday again big boy! I love that last pic! It says it all!!!

Linda

~sydney~ on February 26, 2009 at 1:46 PM said...

happy birthday! how fun! love the new background on the blog!

Jill on February 26, 2009 at 4:43 PM said...

What a year! What a dear baby! May God bless you all many peaceful, calm, and happy days in the year ahead.

Hope Mommy feels better soon. Remember, you're not allowed to be sick!

Anonymous said...

Amber, I love the video and todays pics!! You got such a great looking bunch of kiddos!

I hope your feeling better soon! The house goes crazy here when the Moma is sick! :)

Kim

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