Sunday, February 21, 2010

A Beautiful Day for a Hike

Today the weather was absolutely perfect, way too lovely to stay cooped up in the house. The boys and I took off to go hiking at Leon Sinks. Ever since I had kids I've planned on taking them hiking and they've never been strong enough or well enough at the same time to actually do it. Today was a much anticipated milestone. The boys had a great time hiking along the trail. They loved looking for the blue stripe on the trees or the blue arrow pointing the way. Some of the going was hard, with roots, sticks, and steep hills, but we loved it.About half of the sinkholes were dry, but the ones that were wet were gorgeous! This one had water that was a beautiful green/blue color. We saw one that was red and several the normal "dark" water color.
I was a little bummed that we really didn't see any wildlife though. Lately Beans and I have seen two fox. One gray one on the way to pick Little Man up from school, and a red one when we were on the way to my anatomy class last week. I have to admit, I'd rather see no wildlife than a snake or other unfriendly beast though. ;)
Here's our goofy little family messing around on the trail. ;)

By about halfway the kids were pretty darn tired. Beans' legs would give out and he'd have to take a break for a bit. He was determined though and didn't let it get him down for long.Little Man had a bit of a harder time, as you can see here. He was exhausted from much earlier. It may have been a better idea to wait until we pick up his new orthotics (March 5) but he was still a trooper. He was very attached to this giant pinecone. Despite tripping over his own feet every couple of steps, he dragged it all the way home.We were all so proud when we finished. We plan on doing a lot more hiking. It's so beautiful and peaceful walking through the woods together.

Thursday, February 11, 2010

Checkups

Today both the boys had their annual checkups. Okay, so Beans is born in May and Little Man in October, but let's face it. They're at the doctors enough that I have to admit checkups just aren't the priority. Just before the kids have an appointment I prepare a sheet with their current meds, any new diagnoses, questions/concerns, and upcoming appointments with other doctors. It makes it so much easier to remember everything and keep the boys straight.

Last night I sat down to prepare their sheets. I had several things with Little Man - his reflux is back, asthma, this virus he's had for 3 weeks and can't kick, and a script for new orthotics. Then I did Beans' concerns. Or tried to. For the first time in his life, I didn't have a single thing to put under concerns for Beans!!! We're now 14 months past his last hospital admission and next month will mark 1 year free of ER visits! He's growing, learning, everything you could hope for. The few issues he is having we're waiting on ENT (next week) and genetics (March) to deal with. Wow!

Back to Little Man, he's a whopping 4'9 and 95 pounds! 75% height, 90% weight. A little on the chunky side but still well within range. I found the trick to taking him to appointments is bringing the laptop. He'll immerse himself in it and I don't have to try and chase down a wild alligator while we're waiting. ;) His eyes with glasses were both 20/25. Most everything checked out pretty well. His reflux is back, but really we knew this. He's starting back on Prevacid so that should help. His eczema is back, but that's due to him needing to wear Depends at night. The virus seems to be a sinus infection so he put him on Augmentin for that. He also has another rash that he got 2 creams for.

We discussed the obstructive sleep apnea and the pediatrician feels it's likely we'll need to treat it with CPAP (some sort of breathing device at nighttime) as his hypotonia is likely playing a large role in it. There's also hope, and a pretty good amount of it, that once we get the OSA controlled and he's sleeping better, his behaviors and some of the other health issues will improve and maybe we can go down on some of his meds. Wouldn't that be great? He has an appointment with the ENT on Tuesday to discuss the apnea so we'll see what he says.

Back to Beans, well, there's just not much to say. :D He's 4'3 and 51 pounds. 40% height, 15% weight. A little on the thin side but GREAT for him. The pediatrician does feel his genetic disorder is at least contributing to his issues, even if there's another disorder both boys have, or if Little Man has something else. I'm so hopeful that come time for Beans' IEP meeting in May that he won't even need an IEP (special ed services)! The pediatrician also said that's there's a good chance he can have his tube out in time for him to start dating, if we can find enough foods that he can and will eat. Wouldn't that be great???

To end the visit I finally consented to the kids getting both their seasonal and H1N1 flu shots. At that moment, Beans turned into a raving monster, and certainly not in a cute way. It was horrible. He was in fight or flight mode and there was no reasoning with him. Took 2 nurses to pin him down and quickly get the shots in. I won't go into details but let's just say it was an extremely embarrassing experience and I'm sure the office won't soon forget him.

When it was Little Man's turn he sat on the table, got to have it in his arm, didn't fuss, cry or fight and was just an angel. After the shots when Beans was still being a lunatic, the nurses let Little Man go up to the front office and gave him a sticker. He was such a good boy!

Tomorrow the kids are back at school then off for a three day weekend for President's Day. Once again I managed to schedule my very rare doctor appointment for a day the kids are out of school. This is an appointment they cannot come to so hopefully I can scrounge up a sitter last minute. Then Tuesday the kids both see the ENT about their sleep apnea.

I couldn't leave you without at least one pic of the kids so enjoy:


Thanks for checking in on us. :)

Friday, February 5, 2010

Heartbroken

I woke this morning to find that a little boy I have come to know over the years was losing his battle today. I met his mom on a support group when Ethan had similar issues to Beans. Ethan progressively lost all use of his GI tract and had a multi-organ transplant a few months ago. Today this little fighter has earned his wings. My heart breaks for his family. I cannot imagine facing your child's death. Please keep his family in your thoughts.