OK, I’m back. Sorry to keep you hanging for over a month. We’ve been busy doing “normal” things and there wasn’t much medical information to update.
Current Medical Highlights: Les has his next MRI and Oncology Clinic appt. on Monday 9/20/04. His nutrition appt. is on Monday 9/27/04.
Since July, Les’ appetite has improved and his taste buds are starting to work again. We have cut back on his tube feedings significantly. He was getting 4-6 cans (8oz ea.) of Kindercal each day and now he only gets one.
At first it was difficult to find things to feed him. The nacho chips and cheese dip from Taco Bell along with chocolate whole milk from a local dairy sustained him for a couple weeks. Then he branched out into eating sour cream and onion dip and potato chips. Hot spicy Cheetos were on the list of favorites also. I wasn’t thrilled with all the junk food, but I couldn’t do much about it. Les was having difficulty with the mechanical function of eating. Basically he has had to re-learn how to move food around in his mouth with his tongue. He liked crunchy chips because he could feel them in his mouth (they were hard) and they broke into small pieces and were easier to chew and swallow. He didn’t like bread or anything similar because it got gooey in his mouth and he had a hard time manipulating it. He also liked the strong flavors because his taste buds were still “off” from the chemo.
Progress in the eating department has been extremely slow. So slow that I don’t often notice the improvement unless I compare the present with a week or two ago. It was very discouraging at first because the first couple weeks seemed to have no progress. Then I could start to distinguish a slight change from a couple weeks prior and I became encouraged. Also, other people who aren’t around him as much can notice the improvements better than I can.
Now Les will try a taste of most foods. The volume that he consumes is still small, and the bite size that he takes is tiny (1/8 to 1/4 inch square). Here’s another challenge we encounter that all families can relate to; Les is five, and five year olds have their own ideas of what they will and won’t eat. Needless to say, I’ll be happy when I can cook a meal for the family and know that the whole family will eat it - maybe when Les is 27 :).
Physically, Les is doing great. His progress is still slow, but it is measurable. We were on a large trampoline recently and he was able to jump and get both feet up at the same time. Granted they were barely off the trampoline and I was holding his hands for stability, but it was progress. His walking is getting better as is his strength and coordination. His right hand is still a bit lazy, but when it does pitch in and help it is not shaky.
I took Les back to his gymnastics class today (the one he did when he was 2-4 years old). The teacher is very sweet and she allows Les to attend whenever he can (at no cost to us! YEAH!). We attended the 2 year old class where the mommy’s work with their kids. It was wonderful! Les jumped right into the routine and willingly tried all the skills. There are many challenges for him, but he did much better than I anticipated. He was able to hang and swing from the parallel bar, walk like a polar bear, and roll over a padded cylinder on his tummy (it didn’t seem to bother his g-tube). He did the balance beam and trampoline with mommy firmly grasping his waste, but he did it with a big smile. It was wonderful to get him in a group of kids again and see him trying. He feels comfortable there because the environment, routine and teacher are all familiar from before his surgery. It was kind of funny to have him in that class because he was almost twice as tall as some of the 2 year olds, but they were all welcoming and didn’t seem to mind the bigger kid playing with them.
We did complete the schoolroom/office in time for the first day of school. Of course, there are a few finishing touches that would be nice to add, but everything is functional as it stands.
Home school is a different experience. We are still getting used to our new tasks and trying to figure out if there is a schedule we can create. We still have therapy appointments multiple times a week and so the lessons need to be worked in around those. I love our curriculum and how well it is planned out and presented. Les seems to enjoy most of the lessons, except the ones that he thinks are boring because he thinks he already knows it. I am learning to read Les’ little signs and I’m trying to not let it get boring for him. The next couple weeks we will have San Diego trips to include in our class schedule, so we will have to see how that works.
I’ve attached some pictures from some recent fishing and camping trips.