Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Friday, August 3, 2012

Little Trooper.

Grab a cup of coffee and use the restroom if you need to 'cause this may take awhile. There's a lot of little things going on with the big guy.:)

Weight:
Gah! Not great news in this department...he's had little to no weight gain and sometimes losses. Why? No one knows. Do I think he's the incredible shrinking man? I sure as hell hope not! ;) It's discouraging to see the numbers on the scale go down even though he's being fed 20 out of 24 hours a day. His dietitian is looking into adding a supplement to his tube feedings. He now weighs 14 pounds 8 ounces.

Milestones:
He's walking full time now! Yay and too adorable! He speaks very rarely, but communicates well through body language and grunts.;) Speech therapy may be starting in September. He eats and drinks a little each day, and I'm encouraged by that. By little, I mean a few bites and sips. He's been exhibiting some anxiety and clinginess to me. He has a hard time with people he doesn't see frequently and lately has been hanging (literally) on me. Nothing major just normal toddler behavior issues.:)

Health wise:
He's been retching each day again, not as bad as before, but more then he should be. Not sure what to do about that... He's still teething and still has a rash (the one he has had since April). It's actually spread some to his face and arms. Otherwise, he's doing well and keeping busy.:)

Appointments for August:
Dermatology, 8-7-12 in Wexford. Dan couldn't get off work so Case's FANTASTIC nurse, Jane is coming with us.
Pediatrician appointment:
8-10
Dental clinic (because his tiny mouth isn't big enough for all his teeth), 8-23-12 @ 9am
Urology (for surgery follow-up and to discus other issues), 8-23-12 11am.
GI (Dr. Ruldolf for the obvious and continuing issues) 8-23-12 11:30am
Dietitian (duh) 8-23-12 1pm
Endocrinology, (not sure what all will be covered) 8-23-12
And possible blood work etc.. All the appointments on the 23rd will be at Pittsburgh Children's
So, 8+ appointments and two therapies twice a week will keep our little guy busy in August.:)

In other news:
Case now has a Care Coordinator from Pittsburgh Children's. Can I just say she's my angel? Ha, but really she's only been working with us for a week and has de-chaosed my life some already! If you live outside of Allegheny County and your child has 3+ appointments at Children's each month, you may qualify for a care coordinator. I called her, and sure enough Case does qualify. I told her all the appointments that were made plus the ones that weren't, and she set everything up! She then emailed me all I need to know and will meet us the morning of the 23rd. Once the day starts, if any of the clinics are slow she will contact them and make sure Case stays on schedule. Holy Moley, where has she been all his life?! She was concerned we didn't have a break that day, I of course chuckled and let her know that we're old pros that eat on the go.;)
Case's genetic counselor called Tuesday. All of the tests that were out came back normal. The geneticist wants an MRI of his brain. They already want one of his spinal cord so, they'll combine those since they need to put him to sleep. Also, they want to check his "bone age" and continue vigorous genetic testing. With all of the complications Case has, there is no doubt in their minds that he has a syndrome. They just "haven't found it yet"...

How awesome is our boy?:
Very. He's a trooper and strong beyond words!
Can you see I found him itty, bitty, teeny, weenie, adorable beyond words shoes?! I left my house one night annoyed at the fact that the kids lost the only thing I had that resembled shoes tiny enough for his feet. It was the day before a planed trip to the amusement park that told me he had to wear shoes. I just happened to stop at Super Shoes desperate for "shoe like" things that fit Case so the workers would stay off my back. By god's grace we found these!! Size 2 Nike sneakers!

2 comments:

  1. Reading your post made me tired. Prayers for endurance throughout your busy month! You failed to mention his adorable shoes - YAY for Case! I bet he loves them.

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  2. GAH! I can't forget the shoes!! I just added a bit about them.:)

    ReplyDelete