Our apologies for being quiet for so long. The time has certainly flown by in the Caudle household! Looking back at our last post, it's hard to believe how much has changed in only four months; Henry continues to grow and amaze us! In July, we switched daycare centers. In his new daycare, Henry was put in a room with mostly older kids (his age, up to about 2 and a half), and he is picking up on a lot of things! One of the things they do at daycare is brush their teeth after every meal. Within a few days, Henry was grabbing his toothbrush at home in the morning wanting to brush his own teeth! His babbling also greatly increased within a couple of weeks. TARC's Tiny-K program continues to follow Henry and they have been very pleased with his progress. We have received marks of "significant improvement" with each visit recently. We wrote a new ISP for Henry in July, as he met all of his goals from the previous year!
Henry's g-tube site healed very quickly and easily, for which we are very grateful. He is eating quite well at daycare, from what we hear, although we seem to struggle to get him to eat anything other than cheese, bread, french fries and chicken nuggets. He does also like pork (and bacon), bananas, and ranch - sometimes all together! He does eat a good variety of food at daycare, but that is probably just to show off to all his friends!
Once the weather started improving, and all of our allergies became a little more bearable, we started spending more time outside. Henry was mesmerized by the balloons at Huff n' Puff, and laughed when the hippo wiggled her ears. We have taken many trips to Gage Park, and Henry enjoys riding and waving at the train, and riding the carousel. Swings were a lot of fun for a while, but we absolutely love slides. It doesn't matter if it's the two-foot slide in the play area at the mall, or an eight-foot metal slide, they are all amazing. He could probably spend hours just running around to go back down the slide.
This month, we have visited Children's Mercy twice, visiting four different medical clinics. The first visit was to ENT. Henry battled some chronic ear infections through May and June, and the ENT doctor in Topeka kept pushing ear tubes. Even though it's a simple procedure, Henry's would have to be done up at CMH, since he would have to be put under general anesthesia. So far, we are in a wait-and-see mode: kids get ear infections, and under two is a little quick to put in tubes, so we'll see if he gets more infections where he would benefit from going through that procedure.
Our next visit was with a follow up with the development and behavioral clinic. Henry had a blast showing off his skills and playing games with a couple of young ladies while we talked with the doctor on all that Henry was doing.
Overall, they feel his language and motor development are right on par for his age, and they think his cognitive abilities are above average! We are learning this as we can see him learn how to climb on the playground by watching what the other kids are doing.Yesterday we had one of our last follow ups with the Special Care clinic. They typically follow kids like Henry until they are about two. We may have another visit with her in the spring though, if for no other reason than to show him off!
Our final visit this month was with cardiology. Overall, our cardiologist is very pleased with how well Henry has done over the past year and a half since his Glenn procedure. Even though it was late in the day, and he had not had a nap, Henry did very well with his EKG and echo. He fussed a bit during the echo when they had him tilt his head back so they could take a look at the Glenn area (where his second surgery was done). She said he still shows some narrowing, but given how well he looks and is acting, she isn't overly concerned and would like to see him in 3-4 months to take a look at it again.
We did discuss a little about Henry's third surgery, the Fontan procedure. Their main priority is to make sure he is big enough, at least 30 pounds, otherwise we may run into the issue of him needing to redo/do another open heart surgery. He currently isn't the size requirement, but since he's already pushing 27 pounds, he could easily be there for a possible surgery around this time next year. They typically like the kids to be at least three years old, but since they won't do the surgery in the winter, she thought that might be ok for Henry. The doctor was going to discuss with the surgeons, and we will discuss this more at our next appointment in February.
So please forgive us as these updates have been farther and farther apart. We know Henry is not a normal child, but we have enjoyed a perfectly normal, wonderful summer.
