Whew! Alot has happened since my last post. Sorry it has been so long. Things have just been crazy busy around here, and we have definitely been enjoying ourselves. School has come to an end! Yay! Kaitlyn finished 1st grade with awards for reading and high marks. Hayden is a kindergarten graduate, although this DoD school gave the tikes no frills about it. I wished we got the kindy graduation most people do but oh well. Now, we are rolling into summer things. Days at the pool, slip'n'slides in the backyard, popsicles and hot days with friends. We even made a trip to Busch Gardens. We met up with so old, missed friends for a day at the park. It was a rainy, wet, hot, humid, exhausting day, but fun was had by most(although I think J had fun but just won't admit it). It was Hayden's first day all outdoors in the new chair, and it worked out very well. Kaitlyn is continuing to cheer with Cheer Fusion. In the past few weeks, though, she's gone from barely doing a cartwheel to doing back walk-overs, round-offs, and it almost doing standing back handsprings without a spot. She's also become a much better flyer and is learning alot on those skills. Her coach has greatly improved her jumps, and she's making alot of new friends with her squad. Makaylah is getting in on some of the action. This is her first year cheering. She's on the Tiny team. Although she still has alot to learn on taking direction, she's enjoying it and making progress.
On the medical front, things haven't been as bright. Hayden had another GI appt back in May. He's gained back a couple of the lbs he lost but no where near enough. Hayden is now almost 6.5yrs but only weighs ~41.5lbs. That puts him barely at 20%. He's dangling. Unfortunately, it's not like Hayden goes up and down. It's been a steady down since he was a baby. Now he's heading into the "we need to intervene" land. The GI said he should be putting on 5g a day or 2lbs in 6 months. Hayden is only gaining 1g a day or 0.4lbs in 6months. Yeah, exactly. Not even coming close. This is WITH all of the formulas and counting and pushing that we've been doing. When we stop trying to force him, he actually looses weight. The G tube is on his table. This time, though, Jeremy and I aren't fighting against it anymore. There are so many things that keep Hayden from eating. If he's tired, he doesn't eat. If he's upset, he doesn't eat. If he's sick, he doesn't eat. If he's distracted, he doesn't eat. If the food feels funny in his mouth, he doesn't eat. If he had too "big" of a lunch, he won't eat. You get the idea. He is supposed to be eating 1250 calories a day. He avg. barely 500. He's not coming close. There's also a strong possibility he's still intolerant of the proteins in milk or soy or gluten. He was on special formulas in infancy for this. It has continued. That further cuts foods from his diet and leaves him a bad tasting formula to drink. Getting the G tube, though, will allow us to bypass the brain and mouth and put nurishment directly into his belly. He can also be fed while he sleeps. We can also keep him hydrated much easier. It will still allow him to do all of the activities he enjoys and eat what he wants/can eat. Jeremy and I have already signed the consent forms. We are just waiting for a few formalities to be done.
Makaylah has also been continuing on her path. She continues to have repeated episodes of hypoglycemia. She's been deemed prediabetic. We are no longer allowed to let her go more than 8hrs tops without food or sugar. That means we have to wake her in the middle of the night for sugar. She has to eat all day (to her enjoyment) to make sure her body has enough glucose. From what we are being told, it's only a matter of time. I truly hope and pray she can live out most of her childhood before it turns into Type I.
Right now, Hayden is looking like something out of an alien movie. Despite bathing the kids in Off brand spray, they were a great feast for mosquitos a couple of evenings ago. Kaitlyn got just a few bites. Makaylah got a few more. Hayden was the main course with over 20 swollen, red, hot-to-the-touch welts all over him. We are giving him benedryl and motrin around the clock to try and reduce it.
Hayden's supplies are delivered to us by a company called EdgePark medical Supplies. Over the past few months, I have let them take over more and more of his supplies. This is has been a Godsend. We are now not short of supplies. No more begging for scraps from the pharmacies or clinics. No more constant washing and reusing beyond sanitation protocol or expiration dates. This has been great.
Well, I need to run off to stop the [loud] shinanagins the kids are getting into and the dog isn't going to bathe himself. Hopefully, I'll get back over here before the summer ends ;)
No comments:
Post a Comment