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.
Tuesday, February 26, 2013
You all know how special Case is, I'm sure of that! But do you know how complicated he is? Do you know that he's been tested for thousands of syndromes and diseases and it always comes back negative? What about the fact that all the genetic councilors and Geneticists meet on Wednesdays to discus their most complicated Cases and he's been the topic more than once? None of his
doctors have ever seen a case quite like our Case and most of them scratch their heads at him. His big genetic test, The Whole Exome Sequencing test came back yesterday. There were no tears. No fireworks. Nothing. No known syndrome was found yet. Just a lead to a possible syndrome. They will send his test back and his skeletal surveys somewhere else to see if he does have the syndrome they think he might. If that comes back negative, there is a chance the syndrome is so rare that they would "make it" based on all of his abnormalities. No joke. They even say they might name it after him (that might have been a joke). I think what's hard is his whole life has been full health problems, birth defects, disabilities, abnormalities etc. and there's no telling if or when the difficulties for him will stop. Or if his care will ever slow down. There's no predicting his future as far as growth and health. Don't get me wrong, we really think he is perfect just the way he is but we would really like to know all of what's going on in his tiny body so he can get the best care and have the best quality of life. This guy is a mini mystery. A blessing of complication and unpredictability.
Sunday, February 24, 2013
When I made Case's facebook page this past October, I dove head first into a cyber world of blessings and heartache. A world where a momma can tell me "I know just how you feel" and mean it. A world where you won't see many complaints on children having common colds or colic. Instead you'll see Facebook status's begging God for just one more day to love on a sick child or pictures of tubes, wires and smiles. This is a beautifully sad and happy world. In this world one day you'll see a gorgeous baby on your computer screen and the next day he's gone. Our children's days are numbered and in the "sick kids" world it's more apparent than ever! Instead of complaining of a broken furnace families are thanking God it's "ONLY a broken furnace"…I've made long term friend's with momma's Ill never meet face to face and if I did, I probably would only know who it was by the special child in her arms. I am daily overwhelmed with the love and generosity of complete strangers and soon these complete strangers are dear friends. I'm so thankful I decided to share Case with the world and am overwhelmed by the tough of him having 7,400+ fans (and growing). :) Even though my news feed in flooded with prayer requests, funeral arrangements and praises I wouldn't have it any other way! The child that I was given as my last has opened my eyes and my heart to the good distill left in a world of heartache and for that, I am for ever grateful!!
Sunday, February 10, 2013
I finally got him to take just enough breast milk from a bottle that they took the NG tube out of his nose and sent him home. Once home the battle only got worse. Case had to be fed round the clock every 3 hours with pumped, fortified breast milk.
It involved tapping the bottle, chin support, wiggling Case, holding his hands down, etc. We took Case to his pediatrician every week for several months to have weight checks.
I was excited to introduce table foods and hopeful that things would get easier. They didn't. I had to strap him down and force feed him. He spit on me, threw up on on me and cried at me. I cried too.
I couldn't do for my fourth what came naturally with my three children before him . I couldn't make my baby eat and grow. Finally, at 11 months old and less than 10 pounds he was male-nutritious and needed a tube. I felt defeated and hopeful at the same time.
During Case's G-Tube placement they also did a Nissen fundoplication to stop the vomiting but Case started retching (violent dry heaves) all the time that he now overcomes the fundo and eventually throws up anyway. After the tube insertion and 5 days inpatient we went home. I thought the feeding battle was over but it wasn't. The tube was a blessing but Case's body still wasn't digesting and absorbing right.
6 months, four pounds, two ER visits and lots of retching/vomiting later his G-tube was switched to a GJ. He now is fed 22 hours a day into his J and "vented" 24 hours a day out of his G.
His tubes saved his life and although he is a barely 17 pound 25 month old he is alive. He is happy and he is strong. His feeding battle isn't over. I don't know if he will ever fully eat by mouth or if the tube will ever come out but I know that after 14 months of tube feeds, beeping pumps, G-tube yank out, GJ- tube yank outs, trips upon trips to CHP, vomiting, retching, Meds, bags, feeding back packs and more I couldn't be more grateful for his tube and his doctors that have listened to me cry, responded to 11pm texts messages and are dedicated to finding the best way to nourishing our complicated Case.
We may never figure him out compleetly but we will always have his lifeline that hang out of his wee belly.
Saturday, February 9, 2013
Since before his birth doctors and nurses have "warned" us that no one knows what to expect from Case. They don't know if he'll always be around, if his health will drastically decline or if someday his other organs (beside his stomach and kidney) will decide to not work right. We don't know what Case's future holds but here and now he is our son. He is strong. He is brave. He is a miracle. Please take 5 minutes and watch this beautiful video that show what a blessing God gave us!:)
WATCH HIS VIDEO BY CLICKING HERE!
Friday, February 8, 2013
As the day approaches for us to get the results of the Whole Exome Sequencing Test (an extensive, expensive, 6 month long genetic test that used the blood of Case, his father and me back in October) I've been thinking more about why God made Case different than He typically makes a baby. When Case was formed in my womb, many parts of his body were formed uniquely, some may even say incorrectly. His organs don't all work, his heart has several abnormal variants, his mouth, feet, brainstem, and even skin are "different" than yours and mine and that's just a few of his differences. This test is supposed to find the syndrome that links all of his "problems" together. I have mixed emotions about this test. It could find markers for cancer, Alzheimer's, or another horrible disease. It could say that all of Case's "problems" are carried from me or his dad. It could even tell us Case's days are numbered. I know that some people pray for complete healing for Case and I appreciate that but that's not my prayer. You see, God has always answered this one prayer I pray for His boy and that's "Your will be done." I believe with every fiber in me that Case was made special for a very special reason. No pastor, doctor or test will convince me otherwise. Sure, I ache when Case aches and I cry sometimes but I know that I was handpicked for a VERY special job. One that I will never take for granted and I thank God for Case's differences. When God knit Case together in my womb He used a different kind of thread and like I said before, different isn't defective, different in beautiful.