Friday, August 22, 2008

A Party and Appointments for Our One-Year-Old

Party Time
This past Sunday we had a party to celebrate Elijah’s first year of life. Of course, he had no idea that we were all there because of him; all he knew was that he got to spend time with a lot of people who kept hugging him, talking to him, watching him, and kissing him. Not such a bad deal, hmmm? J He got some pretty neat presents too, loved sitting outside surrounded by family, and got to eat chocolate cake (milk-free, egg-free of course!)...which he loved! It was a lovely day and best of all...Elijah was really happy and showered us all of his smiles and giggles.

Neurosurgeon and Plastic Surgeon Appointment
We met with some of the doctors on Elijah’s “team” this week for a one-year check-up. These two doctors monitor Elijah’s head shape and make sure that his skull isn’t fusing prematurely. Since Elijah’s head does continue to grow (albeit slowly), they still don’t think his head is fusing before it should. The center does seem to have fused, but that isn’t abnormal to happen between six and twelve months. They want to see us back again in a year and we hope and pray that his skull will continue to remain open to allow his brain to grow.

Pediatrician One-Year Check-up
We saw Elijah’s pediatrician today for his 12 month check-up and it went really well. We made an evening appointment to allow us extra time to talk and we ended up talking to him for an hour! What a great doc. The nickname I gave him previously in these journals was “Dr. Positive” and that name continues to ring true. He is such a great doctor and we are feeling so blessed that he is the one to look after Elijah’s growth and development.

It’s not all great news, however. We are once again worried about Elijah’s weight. He now weighs 19.9 pounds...which puts him in the seventh percentile (or so). His height is 31 inches...which puts him in the 90th percentile, which means he’s a tall and handsome fellow. J His head circumference is 41.1 centimeters, which is some growth, but not a lot. We don’t like to get caught up on percentiles, but as his weight continues to drop on the charts, we get more concerned.

Dr. Positive wants Elijah to be tested for something called Celiac Disease. It was too late tonight to perform the test since the lab was closed, so we’ll be getting blood drawn on Monday to find out. So, here’s the mystery...Elijah seems to eat a lot, so why isn’t he gaining more weight? Celiac disease would explain why. The disease would mean that Elijah is intolerant to gluten. Here is a little synopsis of what happens to a person who has celiac disease taken from the
Celiac Disease Foundation’s website...

When individuals with CD ingest gluten, the villi, tiny hair-like projections in the small intestine that absorb nutrients from food, are damaged. This is due to an immunological reaction to gluten. Damaged villi do not effectively absorb basic nutrients -- proteins, carbohydrates, fats, vitamins, minerals, and, in some cases, water and bile salts.

So, what would that mean for Elijah if he has CD? It would include a strict diet and avoidance of more foods on top of the foods we’re already avoiding for allergies. Yipes, it seems a bit overwhelming. Of course, we’re hoping that he doesn’t have the disease, so we could use some more prayers. One – that Elijah isn’t diagnosed with Celiac Disease and Two – that we can figure out why Elijah’s weight continues to be low so that we can help him gain weight. In some ways, it would almost be a relief to find out he has CD, so that we’d know why he can’t seem to put on weight. But, the lifetime implications are scary. To think of all the things he’d never be able to eat is kind of sad, overwhelming and scary. I suppose I’m getting ahead of myself as we do not yet know the answer, but my heart is telling me that he has it. I hope I’m wrong.

Here’s the interesting thing...I’ve been hearing a lot lately from the autistic community on the subject of gluten and casein (milk protein). To me, if Elijah is also intolerant to gluten as well as his food allergies, it can’t be a coincidence. I know that autistic children are benefited by adhering to strict diets and perhaps this will be the case for Elijah too. The cause of autism hasn’t been found, but it has something to do with the brain. I hope Elijah isn’t found to have autism as a result of his injury, but perhaps we can learn something from the autistic community. Right now, though, it’s a situation we’ve become more than used to...wait and see.

You all must be wondering by now...”I thought she said it was a good appointment?!” Well, it was. It was nice to have the time to get all of our questions answered and we also had the time to discuss HBOT with Dr. Positive. We were expecting negativity since using HBOT for brain injury isn’t yet standard, but that isn’t what happened at all. That’s what I really love about this doctor. Most doctors seem to immediately discount things they don’t understand, but he didn’t. He said, “I never thought of using that before to treat brain injury” and listened to us. He seemed fairly indifferent about it and basically said it couldn’t hurt, so go ahead. I suppose it didn’t hurt that Andy had printed out research studies and articles for him to look at if he wished. On another note, I hope you all enjoyed Andy’s explanation of HBOT. He’s so much better at describing it than me.

I think Andy and I feel at ease now about moving forward with HBOT and we are going to be starting treatments soon. We’ll be starting in early September. I’m feeling excited and nervous, but it feels right and everything seems to be falling into place. I hope God blesses this and makes it work. We know it is God who will provide the healing.

Other good the doc was checking Elijah’s tone, he said, “This is not a tight kid.” He did say Elijah has some tightness in his hips, but didn’t seem to think it was that bad. Elijah was giggling at the doctor and Dr. Positive loved that. He said something to the effect of, “This is why I love my job so much, because of kids like Elijah. You take a situation that looks not so good and to see him do so well is great.” He also said something about us getting our happy ending yet. I suppose our happy ending might not look the way I might have once imagined, but I think I agree with the doc. We will see our happy ending.

We hope this finds you all well, thanks for the prayers.. and if you’re still with me after this long post...thanks! :)


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