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a bump in the road…..

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Well right after his 4th bday he started w/ a minor wet cough. Pooping started to slow, maybe because of the mucous. Then just in time for Xmas his pooping stopped. We had to irrigate the day after Xmas and start him on senna. The irrigation was very hard but I got him clean and […]

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Happy Birthday Joey Coop - 4yrs old

Happy Birthday Joey Coop – 4yrs old

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Joey had a wonderful week of celebrating with all his friends and family. He’s doing so well, growing, eating and pooping like a champ!!! Its been 10 mos since his second round of Botox and we cannot believe how close to normal things have been. We do sit on the potty for 1.5-2 hours a […]

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Christmas gifts for kids at Cincinnati Children’s Hospital

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My co-worker has been sending an email around for a few years with a request to donate gifts to hospitals.  There is practically no overhead with this charity.  You buy the toys from Amazon and they ship direct to the hospital.  If you spend more than $25 for most items, you get free shipping I know that […]

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10 months post Botox (#2) and CELEBRATING

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About to go into the holiday season without worrying about irrigations. What a joy!!!!!!!!! Joey is turning four and completely potty trained. We are blessed. We are no longer on long term antibiotics. Amazing! We haven’t seen the surgeon since February. Awesome. Pooping each and every day in the potty, on his own, no laxatives. […]

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Should your HD child have genetic testing?

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Here is something I read on the Johns Hopkins HD research page. ~~~~~~~~~~~~~~~~~~~~ Is there another syndrome caused by changes in the RET gene? Multiple Endocrine Neoplasia Type 2 (MEN2) is an inherited cancer syndrome. People who have MEN2 are at increased risk to get medullary thyroid cancer (MTC), pheochromocytoma (tumor of the adrenal gland), […]

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Slightly elevated TSH

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The blood work ordered by CHOP came back a little funky. His TSH was a 5 and should be below 3, according to endo. It might be because he recently had a very very little cold. We will repeat in 3 mos and see if it stays, goes higher or lower. If it goes any […]

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Went down to CHOP yesterday.  Long story short they said I shouldn’t be to worried about the nodule.  It is very very small and does not look suspicious.  They took some blood to test his thyroid function.  Dr. is also contacting a colleague down at Johns Hopkins who specializes in MEN 2a and will touch base w/ her regarding Joey’s specific RET mutation.  We will go back in a year to do another u/s and blood to make sure nothing is changing/growing.  With two doctors telling us to wait and watch that is what we will do now.

We are focusing now on where Joey is.  FULLY trained.  Pooping like a SUPER STAR.  In school five mornings a week.  Sleeping, restfully through the night.  Growing, singing, laughing, pooping, talking, pooping, running, pooping, throwing fits, pooping…..doing great.  (This is all 9 months post Botox #2, NINE months irrigation free, NINE MONTHS!!!!!!!!!!!!!!!!!!!!!)

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pediatric endocrinologist and surprising results

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So we went to ped endo to have a thyroid ‘check-up’ due to Joey’s RET mutation. His blood labs came back OK but w/ two levels that were on the high end of normal. Then the shocking news. He has a nodule (6mm) on the right lobe of thyroid. We were very upset hearing this. […]

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Genetic Testing results

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Joey’s genetic testing results came back. He has a mutation on the RET gene (exon 2). Apparently a mutation on this exon has never been seen before and the lab who did the test offered to test Joe and I free of charge. Mutations on RET gene can be related to an endocrine disorder called […]

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Botox #2 ( 5 months in)

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Things are great. Fully trained, even at night. No accidents, no smearing. Pooping on the potty like a champ. We, for the most part put him on the potty 3x a day and ask him to poop…usually will poop 2 of those times. He pees whenever he needs to on his own. maybe 1x a […]

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