Thank you for indulging us with yet another update. It really is great to be able to post these updates and to know that people are interested and are continuing to pray for Julian. Those prayers really do make a difference! For example, yesterday our little guy wanted to go to our neighborhood park for the first time in a year. Walking there is still too much, so we drove, brought his trike and he totally impressed me with his energy as he climbed up the playset and went down the slides and repeated that about 5 or 6 times. He was happy and playful the whole time, and then rode his trike a lot farther up the hill home than what I had expected. Of course, he fell asleep at 6:30 p.m. and was pretty grumpy today until after his 2-hour nap, so he may still have been recovering from yesterday's outing. But it is so wonderful to see him doing more of the things he used to do. Jody, his nurse practitioner, recently said that he is doing amazingly well...making the kind of physical progress that they usually see once kids are finished with their treatment. And it was great for our friends who visited from Holland and also from San Diego last week to see how well Julian is doing.
Unfortunately for him, though, he is still vomiting 2-3 times per night. We're trying to get that under control. The MD says he's taking all the right meds in the right doses so he shouldn't be getting sick so often. He does well during the day, but we run into trouble after 2 a.m. We're also on a plan to increase the amount of (NG)formula he receives during the night so that by December, we can wean him off the IV nutrition that he's been getting each night, as well, for the past 11 months. But, with his recent chemo, the slight increase in formula may be a bit challenging to maintain right now. He's had such a long history of vomiting, since even before his diagnosis, that his stomach is pretty vulnerable.
As well, Julian was seen by an ENT last week who officially prescribed hearing aids (for both ears). He's been such a trooper throughout everything, I expect he'll adjust fairly well to this development, too, and will hopefully be happy to hear a bit better.
Finally, Julian will have his MRI this week, on the 19th. This is the follow-up to the one they did last month. The purpose of it is to better examine that little 'tail' they saw last time. Trusting in Him to make it all good.
Feeling a lot of peace right now and have stopped reading and obsessing too much about medulloblastoma. God has been so good and he is blessing Julian with strength and endurance and a tremendous recovery. We are grateful.
In Him,Rich and Andrea
P.S. Months ago, when we were able to share a room at CHOC, our roommate was Cody Day, a really neat 13-year-old who had relapsed after a 2-year remission from medulloblastoma. Since then, Cody has gone through so much and they almost lost him. He is now doing much better, and will be celebrating his 14th birthday on Dec. 9. His mom has asked folks to send him a birthday card, so if you want to participate, please send to Cody Day, P.O. Box 5224, Laguna Beach, CA 92652.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment