New Regimen at Home

Post date: Jan 17, 2010 11:32:02 PM

Yay! We are home again. Two days earlier than we were originally told to expect to come home! We got home late Friday night, but the doctor had told us previously to shoot for Sunday afternoon. I guess being vocal about wanting to go home as soon as it is safe for Connor helps - and the fact that we already know how to pull meds from syringes and perform injections.

Unfortunately, we will be doing a lot of that as it turns out that Connor does indeed have diabetes. Right now we are sticking him 5-8 times a day to measure his glucose. Then we are injecting him 6 or so times with insulin. Poor little boy. He's taking it all very well so far. Probably better than we are. His schedule is still fluctuating quite a bit, but we hope to get some stability to it within the next several weeks. (Shame I just updated his Daily Schedule and was crowing about how much simpler it was going to be for us than previously. I need to knock on wood more often!)

Since diabetes is fairly common, there is a lot of information and education programs in place. We will be attending the education program through the hospital and already have an overflow of booklets, binders, references to read through. It's a little ironic. When we first got his Pearson's diagnosis, we did a lot of research and reading and questioning to hunt down as much information as we could on Pearson's, but found depressingly little data. With his diabetes, there is so much information available out there and support groups, etc. However, we're just not up to it - at least not at this moment. I guess we are just medical-research-fatigued. We know enough to do what we must to take care of Connor's immediate needs and that will just have to do for now.

If you're wondering if his diabetes is related to his Pearson's then the answer is - probably so. The hypothesis is that his Pearson's is the underlying cause of his diabetes. There isn't a history of Type 1 diabetes on either side of Connor's family tree but our metabolic geneticist also said that she was looking into it and found that in Pearson's cases, diabetes was rare. Pancreatic insufficiency is a key symptom of Pearson's and Connor shows that with his digestive malabsorption. It seems that both the endocrine and exocrine functions of his pancreas are compromised so now he also does not produce enough insulin resulting in his diabetes.

Trying to figure out what might be the next set of symptoms for him, I really feel like I need to take a Human Biology course, followed by Molecular Biology, Genetics, Endocrinology, maybe go ahead and get a Ph.D. or M.D., and definitely find a good crystal ball. The complexities can get a little overwhelming at times. Heck, it couldn't even be just a problem with "regular" DNA as I think now of the nuclear DNA. It has to be mitochondria DNA! :-P

But what keeps us going is that both boys are happy. Big brother will be enjoying a big 7th birthday this Saturday and Connor continues to amuse us with his antics. He's had some mood swings lately as we figure out his blood sugar, but he's mostly smiling, laughing and ready to entertain us or go bully his big brother. I don't think we can count the number of times people (inside and out of the hospital) exclaim about how happy he seems and that is a great comfort to us.