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.

Saturday, March 14, 2015

The F word.

 
Let's talk about one of my least favorite F words in the world.....FAIR. I mean really, fair doesn't exist....One of my least favorite parenting moments is when one of my kids come running to me and in the whiniest voice declares, "BUT IT'S NOT FAIR!"  My immediate response is, "You are correct and life will never be FAIR."
I have to admit though, sometimes I wallow in self pity over the looming need for life, things, circumstances to be fair. It's an unachievable goal, a thorn in the sides of most special needs moms. 
It's not fair! It's not fair that our child spends a Saturday afternoon being shot with growth hormones while his friends are at birthday parties and playgrounds. It's not fair that we envy the mom who's biggest worry is an ear infection and how many GMOs are in their daughter's lunch while ours are, "How can insurance deny a hospital stay that happened 10 days ago?! Will his intestines ever work? Will this outpatient appointment turn into an extended hospital stay? Will his next surgery succeed or fail? Will my 'typical' children have emotional baggage from all of this?...." I could go on. There are a million things to worry about, think about, stress about....trust me....I know. 
Truth is....life will never be fair, not for any of us. I will never have the fourth child I dreamed of (before diagnosis) I will never look at tricycles, zip-up pajamas or water parks the same way again. My child may never use those things the way others do but.....here's the positive in this otherwise depressing post:
"Every little thing is (always) going to be alright".....
There are rainbows after the storm. There are tak-n-bake pizzas on my porch because my friends know how "unfair" life can be. There will always be that friend who listens to me cry about the nasty service rep I waited 45 minutes to talk to or the ride that my four year old was too short for even though two year olds were on it..... She listens becauses she knows that my hurt go way beyond service reps and amusment parks. Sometimes, I still need to grieve the loss of the life I imagined. The rumor that we were given this amazing child because we are strong enough to raise him is false. God loaned us Case because we are blessed enough to see the beauty in an unfair life. God's grace is greater than my faults, my fears, my anxieties. I'll  never have a perfect day. Most days, I'll  regret words I said md wish I could fix everything but.... there will always be grace. There will always be that subtle reminder to "be still and KNOW that HE is GOD."
Together, our broken pieces make a whole comunity. We need each other and we need to petition to get the word "fair" taken out of the English language.😉 Just kidding.... 
At the end of an unfair, exhausting, problem filled day, there is always grace abundant and a friend willing to bring pizza. We are loved and we are blessed.  Thank you for loving our #VerySpecialCase and following this crazy journey.