have we had a breakthrough????????????

8.5 months post op- but whose counting?

So since my last post we have seen a new local surgeon (still need follow ups every 6 months) and a gastro. I really liked the local surgeon- much better than the dr. we have seen 5x since getting home from Cinci. He is a pediatric surgeon that specializes in gastro stuff and has done over 100 pull-throughs!!! AND he accepts our insurance so no more paying out of pocket every time we need to see the surgeon! He recommended a butt balm to help JC’s rash (which has been on again/off again since we did nystatin, and enema days here and there). The Butt Balm is 1-1-1 of Desitin, Karaya Powder, Sween Cream (for all you HD families I wrote more about it on the Yahoo HD board). It has worked wonders for our little guy’s bum…YAH!

ALSO..MAYBE…HOPEFULLY..fingers and toes crossed he may be having a breakthrough w/ his stooling pattern. He had been stooling almost every diaper change so 8-12x per day…which obviously was the main contributing factor to his rash (along w/ the very acidic stool that HD kids have). So a few days after we saw the surgeon (oh and we took him of the senna laxative he had been on for the month of Jan) he started having ‘stool free’ mornings!!!!!!!!!!!!!!!!!!!!! I was kind of shocked and not talking about it and blaming it on a cold he had (maybe it is the mucous from the cough I told the gastro…who just looked at me and shook her head-funny). Well we had a good few days of less stooling and a beautiful 90% rash free bum!!! But then a few days of lots of stooling….sooooooooooooo today seems good but yesterday was LOTS, so I am still not sure BUT I am VERY HOPEFUL that we are moving into a better pattern. PLEASE PLEASE PLEASE. I felt so light ( I am sure the HD families know what I mean) when I realized we had a little bit of a new/improved pattern going on…it was a very weird feeling to feel so light and free!

We are still waking at night 1-2x and think this is from gas pain or poop which wakes him and then I have to nurse and then he wasn’t feeling well so I have to rock so we are still tired and trying not to think back to Ella at 14 months, who had been sleeping through the night since 12 months! His night wakings are definitely related to the HD and until he stops stooling in middle of night we will still be waking….eventually I HOPE he will stop needing to nurse…right????

The gastro visit went well. Really liked the dr and just feel good that I now have dr’s on board who I can call/see IF any problems arise. Although we should not have to have any more surgeries there is always still a real threat of enterocolitis which most of the time requires hospitalization for heavy duty antibiotics…so we really needed to get established w/ local dr’s who are knowledgeable in HD.

I will go and see a nutritionist next week who will hopefully be able to give me some ideas for foods to slow down his stooling (luckily he loves bananas).

I will update on that after I meet w/ her!

other stuff:
JC is 14 months, walking, talking (has about 10-15 words), eating well and hitting all is milestones. We are so proud of him! I fall more in love w/ him (and Ella) every single day. They are the light of our lives!


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