Aaron's Hyper IgM Journey

Friday, September 21, 2012

Getting Better

Aaron improves every day. He even ran a short distance today. He had to run to get away from the monster (mommy). This is a game he learned from one of his nannies. He has even laughed a little.

His vital organs and blood chemistries remain fairly stable which reassures us that he is not in a critical state right now. Thankfully, we got to Cincinnati when we did and they were able to halt the progression of his gvh. He hasn't had a fever in three days and he hasn't had diarrhea in 24 hours. Yay!!!!!

We learned that he now has gvh in his mouth and possibly down his throat. All of his gvh has improved greatly since being here. He will likely remain on steroids for awhile. His body still has to fight off gvh. The steroids are causing him to eat and this will help his GI tract heal. They removed his IV nutrition already since he eats like a champ. He is getting too huge. This is not good, but we will take it any day over gvh.

Aaron is starting to come alive and he enjoys all his fun new activities. He is becoming a little more active each day.

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  1. Chandelle - I am so glad to hear this news. As you know, the worst of my problems was GVHD in my mouth. It took almost 2 years to heal enough to eat, and I still have minor flares now that will usually only last a day or 2 (maybe once every 3 or 4 months). It tends to flare when I get a cold and have to breathe more through my mouth. It is a tolerable condition to live with since I still have my life. I am so glad that he is doing better (just for the record, what helped me a ton was getting a compounded mouthwash with Prograf in it. Might be worth talking to your doc! None of the oral meds I took helped, but the mouthwash that I swished and spit did!) In the meantime, let him enjoy shakes, and drinking milk always soothed the sores. For whatever reason (doc said it could be the minerals, etc.) drinking water tended to sting too much. Sugary stuff always stung too! Let me know if I can help in any way. Love you tons!


  2. Can we still mail his box to the address provided? I intended to mail it on Tuesday , but my kids begged me to keep adding small "yellow" tokens to it ;) we have lots of stuff he can un-wrap like Christmas presents & some cool things like wicky sticks he can use to simply make shakes, etc. but helps with motor skills. Please let me know if the address is still good & so happy to hear he is doing better! I also thought you could use the little gifts as rewards for doing small things like walking a bit, standing, etc. as you've noted on here before- mommy tricks! We are praying for you all .& are sending some pics too so he knows he has some pen pals in TN!! Nicole

  3. Nicole you are awesome. Yes we may be released from the hospital next week but we will have to stay local for at least another month. We will be at the same address for awhile.