Welcome to Henry's new blog! We decided to move here so we could have more flexibility in posting pictures, videos, and links as well as better reliability. It may take me a while to learn all the bells and whistles, so this site will continue to evolve!
The last update on Carepages was from September 21st, but I don't think most people received the notification for the update. If you'd like to read the last update or just read more about Henry's first 19 months, visit www.carepages.com/carepages/henrysjourney.
For a recap, we had a very long but productive appointment with UNC on September 16th with a feeding specialist, a nutritionist, and GI nurse practitioner. As I mentioned in the Sept 21st update, we realized that when the "abnormal" has become a part of life's "normal" routine, it becomes difficult to realize how "abnormal" things really are!
UNC's first goal is to make Henry comfortable and eliminate any GI discomfort he may have. We switched his reflux medication from Prilosec to Prevacid. It is already apparent that the switch was a good one as we can tell that Henry is much more comfortable, has had less reflux, less vomiting, is happier, and seems to want to eat more. I'm getting really excited about the changes we've seen since switching to Prevacid, but I'm afraid to get my hopes up as they've only been torn down in the past by just another bump in the road.
We also tried using Erythromycin, which is an antibiotic but when given in a dosage smaller than that necessary to treat infection has been shown to increase gastric motility. As a result, Erythromycin should help empty the stomach quicker. Henry did not react well to the medication, so we had to discontinue its use.
We have an appointment set up in November to replace Henry's G-tube with a MIC-Key button. MIC-KEY buttons are much more common than the "bard" type G-tube Henry currently has. Since UNC sedates kids for this replacement (its not considered surgery), they will also perform an endoscopy to check for any damage. There will also be blood drawn to check various labs and for genetic testing. Although there will be many procedures performed at one time during this appointment, we are grateful that UNC has been able to work among specialists to limit Henry's visits and "doctor anxiety."
Last week we started seeing Krisi for feeding therapy at UNC. Since Henry associates hospitals and doctor visits with discomfort, the first appointment was a bit rough, but this week's appointment was much more relaxed! We've learned a couple of techniques to work with Henry and hope to see progress over the next few weeks. We are specifically focusing on spoon feeding and drinking from a cup.
In addition to changing medications to make Henry more comfortable, we are also reviewing his diet. Henry currently drinks a high calorie soy pediatric drink. There have been a lot of recent controversies over the use of soy and the negative impact it has on calcium absorption and thyroid function, especially in children. For a while, I was making my own almond milk and adding coconut oil to it to help Henry get the nutritional benefits of both with the additional calories. After meeting with the nutritionist we decided to try Hemp milk, also adding coconut oil for nutritional benefits and calories. He likes it, but we gave it a break due to some loose bowels, but we're not sure that was the culprit, so we will try again this week.
Two new corn mazes opened up within 5 miles of our house this year! We visited both of them over the past couple of weeks and the kids had a blast! The "corn box" was a big hit at one corn maze and the other had a great hay ride!
Stewart's 6th birthday was yesterday! Happy Birthday Stewart! We had a great time with some
family and friends and now we're gearing up for the "all boys" party at Frankie's Fun House tomorrow!
