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.

Sunday, October 30, 2011

Sometimes I forget.

I was laying on the floor playing with Case. Kissing him, hugging him, tickling him. Just loving on him. I forgot about the last time he ate. How many calories he had so far. When he's going to eat again. The possibility of a G-tube. When OT and Pt are coming to the house. I wasn't thinking about Pittsburgh appoints or the next time he'll go to the peditrican. In that moment it was just me and him. Nothing else mattered. He is the sweetest boy.

Help me Lord to forget more. To trust you completely.

You will keep in perfect peace him who trusts in You.
Isaiah 26:3

Frequently asked questions.


Since I started this blog well after Case was born I thought I'd make a post incase some of the readers aren't exactly sure what is really going on with this sweet boy.

How preemie was he?
Case was less than 4 weeks early according to my latest due date (they pushed his due date back a week or so because he was measuring small).

How much did he weigh at birth?
Case was born on December 21, 2010 at 2 pounds, 13 ounces.

How long did he stay at the hospital after birth?
38 days.

What exactly is wrong with him?
I think he's perfect.:) Case was born with several congenital anomalies.
*IUGR Intra Uterine Growth Restriction. This was possibly due to his umbilical cord and the placenta being abnormally small.
*Failure to thrive. A scary way of saying he isn't growing as much as the doctors would like him to.
*Severe Hypospadias which will be fixed with surgery.
*Cryptorchidism which will also be fixed with surgery. *Update: This was fixed on 7-9-12
*One multi-cystic dysplastic kidney that does not function.
*A resolved VSD and ASD.

PROBLEMS THAT DEVELOPED (or been found) SINCE HIS BIRTH:

*Gastroesophageal reflux disease (GERD) 
*Hyper gag reflex
*A PFO.
* Sacral Dimple
* Submucous Cleft Pallet
Keratosis pilaris (Chronic Skin condition)
* Slow motility. 
* Case is J tube fed 22 hours a day.
*Tethered cord *Update* Tethered cord was released via surgery on October 29th, 2012.
*Abnormalities of his brain stem
*Senosis of the Foramen Magnum (the hole his spinal cord goes into is small)
* Found that his left ear drum does not vibrate due to fluid behind it. 

Does he have any other surgeries coming up?
It's looking like he will need a g-tube placed in the near future.
*Update. Case had a g-tube placed and a Nissen fundoplication on November 22, 2011. He spent 5 days as an inpatient. Yes, him and I celebrated THanksgiving in the Children's Hospital.:)
* Update: Case had his G tube changed to a GJ on June 22nd, 2012 due to vomiting and intolerance.
*Update. Case had the first of four surgeries to fix his boy parts on March 2nd, 2012. He spent only one night inpatient. His next surgery in that "department" is July 9th, 2012.
* Update: Case will have his 3rd of four surgeries "in that department" on December, 12th 2012.
This is a total of 5 surgeries. He will have more in the future.

Who all does he see?
1. Cardiology (only once a year).
2. Endocrinology
3. Urology
4. Nephrology
5. Genetics
6. Gastroenterology
7. Our local pediatrician
8. One physical Therapist
9. Occupational therapist (to help with eating issues)
10. The feeding team at Children's
11. A nutritionist.
12. Cranio-Facial.
13. The surgeon that placed his Mic-key and did his Nissen Fundoplication.
14. Dental Clinic at Children's
15. The Dermatologist at CHP.
16. Orthopedic Surgeon.
17. A speech therapist.
18. Neurosurgery
19. ENT (ear nose and throat specialists)
20. Neurology.

Does he have a syndrome?
They have him diagnosed as "having an underlying syndrome" they just haven't found it yet.
*Update: They are starting to look more vigourously for said syndrome and started a Whole Exome Sequencing test in October, 2012. It will take 4-6 months to get any results.


Is he meeting all his milestones?
Mostly.

How do you feel about all of this?
Blessed.

Tuesday, October 25, 2011

Open up your plans and damn you're free.

So Case loves the Jason Marz song, I'm Yours. It's true. At a very young age it was the only thing that would keep him quiet in the car. As soon as he heard it the first time, he stopped screaming and listened. It was one of the many songs on a playlist I played for him in the hospital while I feed him. I don't know why he picked that song as his favorite but he did. Some days it plays over and over in my head. Like it's trying to tell me something. Like He's trying to tell me something. I don't know all the lines nor do I care to really... the lines that I hear over and over are:

But I won't hesitate no more, 
no more, it cannot wait 
I'm Yours 
(me talking to God)




Well open up your mind and see like Me 
open up your plans and damn you're free 
look into your heart and you'll find love love love love
(God talking to me

When I first found out I was pregnant with Case I had plans. Plans he would be a normal weight, with no complications. I didn't plan on having a c-section. I didn't plan on him being life flighted away from me to a different hospital. I didn't plan on all these appointments. Etc... I didn't think about these plans, really. I just kind of expected that he'd be like our other three children. In most ways he is. Just a small version of his daddy with a little extra care. He takes more time, but oh is he ever worth it! Case isn't exactly how I planed, but he is exactly how God planned and we wouldn't have it any other way. <3

Monday, October 24, 2011

Cutie Pie.

I thought you all might enjoy some cute pictures of our sweetie.

 Waiting for Meredith and Samantha's school buss. 
 This little man loves to snuggle!
 I figure I'll bath him in the sink till he's 6. As long as he still fits.;)
 Breakfast!
Daddy's video game tired him out.:)

Case is doing well. He goes to the pediatrician Thursday and has the occupational therapist is coming tomorrow (to work on his eating skills). He is such a great boy!!

Sunday, October 23, 2011

A cute little video.

I made a video of Case in his Halloween costume for a little contest. I have been enjoying the website thredup.com. It's a way for mom's to swap clothes their children no longer wear. Anyway, I thought you guys might like to see Case in his costume and the video with the most views by the end of today wins. Either way, win or lose, Case is ADORABLE!:)

Tuesday, October 18, 2011

He was singing and smiling.


I was out to breakfast with Dan and the kids this weekend and one of the servers (who absolutely loves Case) stopped to chat. As she was enjoying Case and high fiving him she asked about his size and it came up that we take him to Pittsburgh Children's hospital often for checkups. She said she goes with her daughter and grandchild who has Autism. The lady said that being at Children's is a great reminder of how good she really has it. Autism is not something her and her daughter had hoped their sweet child would have to deal with but to them it is manageable and could be a lot worse. She reminded me of a night towards the end of Case's stay at the hospital. I was in the cafeteria by myself (Dan and the kids were gone for the week so Dan could work and go to school) and I was feeling sorry for myself. I was tired. Done. I wanted to take my baby and worn c-sectioned body home. During my woe-is-me moment I saw a very ill girl, probably early teen years. She looked close to death as she slouched down in her wheel chair. I looked up to see who was pushing her. I figured whoever it was probably looked a mess. I thought a would see a tired face full of worry and greif. I did not. What I saw was a strong man (I assumed her father) singing. He was singing and smiling. What a humbling experience that was. I kissed Case's sweet face just a few extra times that night and thanked God that all I was dealing with was an "inconvenience".


Here's the sweet boy eating soft candy corn and sporting his new haircut. :)

Thursday, October 13, 2011

Special boy.

There is something special about this boy. When we first brought him home from the hospital (at 5 weeks old) he weighed 4 pounds 1 ounce. I knew what it was like to take a new baby to the grocery store. The older ladies and very rarely a man or two would stop to admire our girls. Take that attention and multiply it by ten (or more), that's how much attention Case got when I first took him to Wal-Mart. I could barley get a carton of milk without  being complemented on how cute and little he was. Also, people are curious and very often asked me questions about his size. I figured that attention would die down once he wasn't a tiny baby any more. I was wrong. Just the other day I found myself in the front of Wal-Mart surrounded by several women admiring our special boy. I can't blame them. He's adorable. All 10 pounds 4 ounces (hopefully more by now:). Sitting up all by himself in a cart with a smile almost as big as his face. He has a charming personality and quite a few girlfriends already.:) I think he knows God made him different. He is full of love and knows no prejudice. It doesn't matter who you are, what you look like or where you've been, if you come up to Case in Wal-Mart (or where ever he happens to be) he will shine Jesus's love on you. He is a special Boy. He is God's special boy.
P.S He LOVES to drum! Here he is playing Rock Band with his daddy early in the morning.

Saturday, October 8, 2011

Case update.

Case had two appointment's at Pittsburgh Children's Hospital on September 28. One was with Gastroenterology and the other with Endocrinology. I learned early on in Case's pregnancy that worry does no good.

Refrain from anger and do not fret; it only causes harm. Psalm 37:8
Who of you by worrying can add a single hour to his life? Matthew 6:27

But I still do it some. I think less than I did back then and hopefully more than I will next year at this time. Turns out there was nothing to worry about.:) Case was refereed to both doctors because of slow weight gain. He gained around 4 ounces in two months (not good). His pediatrician set up the appointments at the end of August. From August 26-September 27th Case gained 18 ounces. Bringing him to a whopping 10 pounds 4 ounces. FABULOUS! It took a lot of me pushing, and shoving and walking him around singing with his bottle in his mouth. Oh, and tons of prayers and patience.:) He worked so hard for those 18 ounces and I was so pleased with him. The doctors were happy too. However, Dr. Roldolf (an exceptional GI doctor) said there is a chance he'll want to place a G tube. It is a tube that would be placed surgically (he would need to stay at Children's for a few days). I had a surprising amount of peace about this. It's not ideal but I feel if it's necessary then, it's no big deal.

All and all Case is a happy, amazing 9 1/2 month old. He is "army crawling", sitting and pulling himself up. He says "da-da" "hi" and lots of other word-like sounds.

He is such a mini-man!

Wednesday, October 5, 2011

The Journey.

I will lead the blind by a way they do not know. In paths they do not know I will guide them. I will make darkness into light before them and rugged places into plains. These are the thing I will do  and I will not leave them undone. Isaiah 42:16

 I found out I was pregnant with Case in May of 2010. My husband and I had no idea what a journey we were on. In September 2010 at about 25 weeks of pregnancy we started a long string of second level sonograms usally resulting in more bad news. Case's diagnosis before birth was grim. "He has so many congenital anomalies there is a good chance he will have failure to thrive and die" - said by one of the Pittsburgh hospital's obgyns. We knew that God was in control and that everything was going to be "okay". We did not know if our son would live or die and if he did live we were uncertain of his health and overall wellbeing. What we did know is that he did, does and always will belong to God and he would (regardless of where he was) be okay.

Case was born through c-section on December 21, 2010. He was less than 4 weeks early (according to the very latest due date they gave me) at 2 pounds 13 ounces.

He was diagnosed with: severe IUGR, a multi-cystic dysplastic (non functioning) kidney and a few other congenital anomilies. Nothing as severe as we had prepared ourselves for. He spent 38 days in the Children's hopital. I stayed at the Ronald McDonald house (a beautiful place) 100% of the time.

In the blogs to come I will share journal entries from my pregnancy and updates on how Case is. We travel often with Case to Pittsburgh Children's hospital (about 2 or so hours away) to see many specialists.

Give thanks in all circumstances for this is the will of God. 1st Thessalonians 5:18