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, March 18, 2013

In the middle of my little mess..



One of my favorite "Case songs" is This Is The Stuff by, Francesca Battistelli. The first time I heard it was at CHP during his 38 day NICU stay. My favorite line is: "In the middle of my little mess
I forget how big I'm blessed" and "So break me of impatience
Conquer my frustrations
I've got a new appreciation
It's not the end of the world". Granted, I have more "little messes" than parents of all "typical" children. And maybe some of my "messes" are a little bigger than little BUT they aren't burying my son (something I was told to prepare to do) and they aren't going to kill me (well, at least I hope not! Lol).

Being a special mom is hard. It's exhausting. You feel constantly on guard for the next "mess". You're frequently fighting with insurance companies, pharmacies and billing offices. You clean up puke more times than you tie your shoe and JUST as you're about to walk out the door something starts beeping or leaking. And yes, sometimes you cry. You yell more than you want to and you wonder some days if you're going a little crazy. You're life is out of control. You can't make the world understand your child. You can't make them love him like you do. You can't make "life" slow down so you can do all the special mom things without the extra crap life throw at you. You need more time in the day to do what needs done. You'll probably always feel like there's more work than day and like there's always "to dos" on the to do list but what you can control is your attitude. That's it, really. You can love the unlovable because God loved them first. You can forgive yourself 70 times 7 then forgive the insurance company's social worker for still calling (after you told her twice to stop) because forgiveness produces bitterness. It puts shackles on your heart. You can only do so much because you are only human. There will be a million "little messes". It's time you give yourself a break and know that it's not the "end of the world" and you'll mess up again tomorrow but that's okay because you are growing. You are a better mom now than you were yesterday and you'll be even better tomorrow because even when you're pretty sure you're screwing up, you see in your child's eyes they you've done something right.




Friday, March 15, 2013

Crooked paths.


"I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine"

I've been traveling a crooked path and all I see I one step ahead. This land can be weary but blessed. I am overwhelmed with the amount of blessings Case and his story bring, spiritually and monetarily. As I was speaking to his Genetic Councilor today (yeah, we chat on the phone, lol) I started thinking about what a special Case we really have. Noone, not one of his doctors, nurses or therapists have ever met a child just like Case. He's complicated and so far, un-figured out. It's been a long, exhausting journey and its only just beginning. But for every complication Case has received a hundred blessings. He was sent to us to show us how precious life is. He's opened my eyes to a huge, beautiful world of people who have hearts of gold and love that reaches far beyond their 4 walled homes. I am in awe of the dedication all 20+ doctors, therapists and specialists have for Case. They won't give up on him and will help his father and I give him the best quality of life possible. You see, Case's tiny body is full of complications and although he's beat the odds and appears "normal" he's got a lot up against him but he's always smiling. When most complain about the weather, Case gets poked, prodded, cut open and tube fed without complaining. He see the good in a world full of bad and he brings out the best in us. If we all could be just a little more like our special Case, the world would be a better place.:)




Love this song.:)

Change is...good?



As some of you know our life is about change. In 7 days we are picking our 4 children and life up and moving it an hour away. Dan got a job offer back in October and took it. It took 3 months to find a buyer for our house (we had to sell before we bought) but now we are only 7 days away from a whole lot of change. Good change, sad change and a little bit of scary change. We leave our dear, feels like a grandma nurse that has been with Case for a year. We lose the pediatrician that I've grown to love, trust and call all hours of the day. We leave all four of our sweet, dedicated, hard working therapists and well just a lot of special people. Thank God we don't lose our Children's hospital!

As a child, I struggled with change. If I couldn't find my pillow or someone else was sitting at my seat at the table, my whole day/night was thrown out of whack. Well, these past 26 months have been nothing but change and I'm still not used to it!:) I know that change is good. This move IS good. I can feel it deep inside but I still feel anxious. I still feel like I'm "starting over" and have to stop my mind from running through all the "what ifs" and worst case scenarios. Moving with a special Case requires more effort and more change then if Case weren't so special...;) I pray that God goes before us and prepares our way. That help will be there when we need it and that there is another "perfect nurse". That the new pediatrician is patient and gently cares for and about our special Case all hours of the day and night;). I pray that I can trust Him and live in the moment not wasting time worrying about tomorrow. This is a new chapter in our book and it is good. God is good ...all the time.

Worry does not empty tomorrow of its sorrow. It empties today of its strength.

Corrie Ten Boom


Jeremiah 29:11

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.