Category Archives: mechanical soft diet

Let’s talk GI, part 1

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full-stomachJust a little warning for my readers, this post talks about poop and other GI issues, so if that makes you queasy, you may not want to read this one, for others, this is Joey’s GI story…

From the time we started Joey on baby food, he always had chronic diarrhea. I knew there was something not right with his stomach. Around 2 years old, I finally got him in to see a GI doctor at CT Children’s Medical Center.

After a few months of seeing a GI doctor, she ordered an upper GI to see if anything could be seen there. Unfortunately, the doctor DID see something. It was discovered that Joey as born with malrotated intestines, aka flipped intestines. Obviously, this would require a surgical fix. I’ll never forget walking out of his appointment and calling my mom crying, after all, even as an adult, who else does one turn to when things don’t go right, one’s mom…

Surgery was scheduled for a few weeks later, thankfully my parents were able to come up from Ohio to help with Leah while Joey was recovering. While in the operating room, the doctors also discovered a Meckel’s Diverticulum and that his appendix was even  on the wrong side of his body, both of which were removed during the procedure.

Poor Jojoe (and mommy), we spent 1 week in the hospital before he was able to be discharged. His bowels had to start moving again and he had to be able to hold down food before we could go home. After that, recovery wise, wasn’t too bad. Just had to halfway keep him out of trouble for a few weeks before he could resume normal activities.

Unfortunately, this surgery did not fix his chronic diarrhea. We tried switching around his diet, we tried gluten free, dairy free. One issue still to this day is that Joey can’t eat solid food. He has some pretty severe sensory issues with solid food and not being able eat them so that also has always added to his BM issues. Obviously, not eating solid food, means not having solid poop…

Two common issues with Down syndrome is Celiac Disease aka an allergy to gluten, and also Hirschsprung’s Disease aka chronic constipation (which we already know is not Joey’s issue, lol!).

One trip to see our GI specialist had also discovered that Joey’s BM had blood in it.The next step Jojoe’s GI doctor and I agreed on was a colonoscopy and endoscopy.  The colonoscopy came out negative for Celiac and other food allergy but positive for Lymphocytic Colitis. Along with changing his diet and trying a few different colitis medications that are safe for pediatric use, we never truly found a cure for his chronic diarrhea. There was no medicinal cure that got rid of the blow out diapers, it’s just something that we’ve dealt with all of these years and sadly, there’s more to Joey’s GI story, but I will save that for another day soon.

To be continued…

 

 

Duck and cover!

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Well the annual stomach bug has entered our household and it’s latest victim is Jojoe. I spent the night with him out in the playroom bouncing between the sofa and the recliner. The poor kid is miserable!

This is one of the frustrating parts about Joey when he’s sick. If he doesn’t feel good, he won’t eat or drink. It’s times like this that I wish my kid would eat a popsicle or jello, but it’s one of the downfalls to his sensory diffilculties eating. Praying we can keep him hydrated and out of the hospital.

Thankfully a few hours ago, he finally fell asleep on the sofa with me but of couse like this…

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How about some potatoes with that ketchup?

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Up until last year, going out to eat with Joey consisted of us having to feed Joey at home before we left and then “bribing” him with his iPad to keep him behaved long enough for us to eat our meal. During this time, he’s had a totally awesome personality growth spurt resulting in some new milestones. As a parent of a child with ANY special needs, sometimes, the smallest milestone to one parent, might mean the world to another. I had tried ordering his favorite meal, mashed potatoes (covered in ketchup) at various restaurants with no success up until then.

Finally one day, we had stopped in New York on our way home from a trip, and once again, I ordered him mashed potatoes. When our meals arrived, I made sure we had a nice full bottle of ketchup, looked at him straight in the eyes and told him it was time to eat. Of course, he shook him head no, but I looked at him again and firmly said that it was time to eat.

He reluctantly picked up his spoon, got a spoonful of his potatoes and took a bit! It took all I had not to start bawling tears of joy right then and there! Since then, if we’re at a restaurant and they have mashed potatoes, I know he can be included in our meal as a family. One of his favorites seems to be Cracker Barrel.

Recently, we stopped for dinner at a Cracker Barrel and I got him to eat with me and his siblings. Leah and Aiden beamed with pride as Joey ate his meal with us. The next step, eating solid foods!

Ya know, it’s the small things in life that really count!

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Joey finishing up a juice box after eating his potatoes.

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Leah and Aiden are always so proud of Joey and his milestones. They celebrate just like we do when he does something new and wonderful!