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.

Monday, April 9, 2012

Fan-freakin-tastic.


I wrote this a few days ago and am just now getting around to posting it.:)


Good day Case fans! It's a wonderful day in the land of All Things Case.;) Case weighs 14 pounds 3 ounces. He can "crawl" (or something like that:) the WHOLE WAY up the steps with out any help. Up until yesterday he only went a step or three, got tired and I would help him the rest of the way. He also consumed all of his morning calories by mouth! Big freaking deal! He did, however vomit afterwards but that's okay, at least he still has the desire to take food and drink by mouth. He was also fitted for an adaptable stroller on Thursday. If his insurance approves he'll get it. It's really cool and going to be super helpful. Not only will it have more cargo room and be more comfortable it will have an IV poll so I can properly run feeds and hang the vent bag. It will recline at the right angle to prevent aspiration. All and all it's going to be awesome and will make our long days at Children's much easier.:) The home nursing is going well too. Can I just say, I love having 8 hours of uninterrupted sleep? I still hear him but then hear a nurse come sup the steps and i know he is in great hands! I feel so blessed to have such wonderful help. I have really fallen in love with his nurses and of corse, they all adore him!

Dan and I are taking him to Pittsburgh Wednesday evening and staying the night. He has a long day of appointments that start early Thursday morning, the twelfth. Urology (with his surgeon), GI and Endocrinology. He has to go back again the 30th to the Cranial facial clinic to check his throat.


Good day Case fans! It's a wonderful day in the land of All Things Case.;) Case weighs 14 pounds 3 ounces. He can "crawl" (or something like that:) the WHOLE WAY up the steps with out any help. Up until yesterday he only went a step or three, got tired and I would help him the rest of the way. He also consumed all of his morning calories by mouth! Big freaking deal! He did, however vomit afterwards but that's okay, at least he still has the desire to take food and drink by mouth. He was also fitted for an adaptable stroller on Thursday. If his insurance approves he'll get it. It's really cool and going to be super helpful. Not only will it have more cargo room and be more comfortable it will have an IV poll so I can properly run feeds and hang the vent bag. It will recline at the right angle to prevent aspiration. All and all it's going to be awesome and will make our long days at Children's much easier.:) The home nursing is going well too. Can I just say, I love having 8 hours of uninterrupted sleep? I still hear him but then hear a nurse come sup the steps and i know he is in great hands! I feel so blessed to have such wonderful help. I have really fallen in love with his nurses and of corse, they all adore him!

Dan and I are taking him to Pittsburgh Wednesday evening and staying the night. He has a long day of appointments that start early Thursday morning, the twelfth. Urology (with his surgeon), GI and Endocrinology. He has to go back again the 30th to the Cranial facial clinic to check his throat.

That's all the news I've got for now. I'll keep you all updated.:)That's all the news I've got for now. I'll keep you all updated.:)

Trying out one of the strollers.:)

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