First of all…doesn’t he look awesome?
Today was kind of non-climactic medically speaking. We’re in the in between stages of the program where they’ve ruled out all of the normal eczema kid stuff and now we’re working on the “my kid is interesting” eczema stuff. Tomorrow we’re meeting with one of the adjunct dermatologists that splits time between Colorado Children’s and National Jewish. She is looking for some very specific skin disorders and seeing if she finds anything that maybe one of our doctors has missed. She has been armed with a specific list of symptoms that they are sending him to her for.
Next week we will begin patch testing (unless she wants to start it tomorrow and then we will start it with her) and they also want to try some antibiotic challenges with him next week since we are down to very very few that he can take without reaction. Monday we will also see ENT to get a new CT scan done to see if they can see a correlation between the amount of stuff in his face to the amount of irritation on his skin. Our ENT has noticed it before, but they want to look at films themselves, especially since he’s rinsing nastiness out of his nose.
This afternoon we escaped a little bit early and went to the zoo. Jonah LOVES zoos.
We’re hoping to go see snow this weekend up in the mountains and go to the aquarium or the science museum (both are free for people staying at the Ronald McDonald house, which is awesome). Tonight, there was a group that came in and made dinner that were all alumni from the University of Central Florida that live in the Denver area now. I think it’s kind of amazing the groups that pull together to help parents out when they are staying here. We’ve had the best experience possible so far for spending 2 weeks in a hospital with your child. Please continue praying for clear answers and a happy, healthy kid.
In what might have been the highlight of the trip so far, this peacock chased Jonah for a few steps and squawked a few times. I thought he’d hate peacocks forever…Nope. He still tried to pet it again later.
Love knowing that those things are free for Ronald McDonald families — hope you really have some fun this weekend (including snow!). AMEN – clear answers and a happy healthy kid.
Cool glad to see smiles!!!,Hope you enjoy those other places! Are they testing him for any autoimmune disorders? I had a cousin that had that ……with some of the things your son goes through …constant prayers and hoping for some results for you…
That is coming next week, as well.
I’m so glad u r being able to stay at the Ronald McDonald house. That is an amazing charity that is set up. I’m glad they are narrowing things down and starting to find some answers. Looks like Jonah had a blast at the zoo and I’m sure he will love all the other activities. He has never ceased to amaze me with his strength. I’m sure he’s not fond of all the tests but he will Definently remember how awesome his parents are and all the fun things you did while you were there. Praying every night. Oh and Brent and Bradon wants to know if his cars are making him happy. Lol. Things kids focus on 🙂
He LOVES his cars! He’s making one of the doctors play with him with them every time he comes in.
Glad to see this long stay is not all traumatic, and you guys get to have some down time. It is wonderful there are people who are able to come and help prepare a meal. What a load off….. Looks like Jonah is enjoying himself a bit. Glad you found such a great caring place… Lots of love and prayers… Missing you guys…
I’m glad to hear that things are going well & that you’re getting some results back for Jonah. He’s such a great kid to take most of this testing & such in stride:) If you end up in the EEG/ sleep lab area at Colorado Children’s, my sister, Phyllis Wilson works there doing neurodiagnostic testing…not sure if she does the sleep apnea testing or not. Love you guys & you continue to be in our prayers.
What a small world! If she knows a way to help us get scheduled in there in the next week, let me know! Apparently they stay booked out forever and we are hoping and praying for a cancellation.
Hi Jonah !! Glad you had fun at the zoo!! Peanut wants to go there too and play with all the giant kitties in your pictures!! Peacocks are beautiful, aren’t they?? So glad you had a day of fun, sweet boy!