The Atypical HUS Foundation

Just realized that I havne't posted here in FOREVER!  Can't remember if I even put on here that Hyde was having a colonoscopy and Endoscopy a week or 2 ago?  Anyway - it was a result of on-going diarrhea after his virus back in January that landed us in the hospital for a week - here's the latest below.

Hi - quick update - first off Hyde survived his colonoscopy and endoscopy - he didn't have a ton of fun but at least it's over. The initial thoughts from the doctor were fairly good - most importantly she didn't see any signs of PTLD (post transplant lymphoma) which is what we REALLY didn't want it to be. We spoke with her Saturday after she got the biopsy results and these were totally great - they showed reflux in the esophagus, chronic gastritis in the stomach, and chronic colitis in the colon - and had notes that these were most likely medicine induced. SOOOO - where do we go from here? They have already put him on prevacid so that should hopefully help with the reflux and gastritis. The colitis - we are holding for 3-4 weeks to see how he does - one of the culprits could be his Soliris (which he CAN NOT go off of - so if this is it we just live with it), the other could be the rapamune - however the rapamune has other benefits long term - so we are going to see if we can get him off his antibiotics (he just finished his 4th round for an ear infection that just won't go away). If his symptoms improve we may stick with what he's on, if they don't - we may have to switch him back to Prograff - so wait and see for now and reevaluate in a month.

Bill took Hyde to clinic last week and they both did very well! The kids also had a blast going to Warner-Robins to see a special practice of the Blue Angels show on Friday with a bunch of Make a Wish families I'll post pictures soon of Hyde sitting on the shoulders of the base commander (a 2 star general no less) watching the show! Seriously - only this kid - he was explaining to the general all that was going on with the planes - I'm sure the general appreciated his commentary ;-/ - and even more appreciated Hyde messing up his hair with his hands all over his head!

Other than that we are doing good - I do Hyde's Soliris infusion TOTALLY by myself this Thursday - so wish me luck! Kids (and mommy) are counting down until school's out in 4 weeks - think I'm more excited than they are!

So - a Hyde funny to leave you with (for all you not on facebook - id you are just skip this). Hyde's class did paintings of cardinals for their art project for the preschool art show - and his teacher (and 4 other people) were having fist for me to read the write-up that was alongside their artwork - so here it is (what the teacher had written up):

Winter Cardinals: The idea for painting cardinals came from a discussion that my children had in class one day. It was a funny discussion that actually took place during snack time and didn't involve me. Avery started, 'I saw a red bird eating at the bird feeder yesterday.' Which resulted in several 'I've seen red birds' and 'me toos' from around the table. 'Well those are cardinals and only the red ones are boys' said Hyde. 'Well, there was a brown one at the feeder too' said Avery. 'Yep, those are the girls and they're not as pretty as the boys' said Hyde. 'Girls are pretty.' ' Yeah girls are prettier than boys.' 'You are being mean Hyde.' came the chorus of girls at the table; at which point Hyde threw his hands up in the air and said, quite matter of fact ' well, take it up with God, he made the birds not me.' And so our segment on Cardinals was born.

He he he he.

thanks as always for all the love and support - will update after our next clinic.

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