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.

Friday, January 27, 2012

So thankful.

So, Case had a cluster of appointments and blood work yesterday and today. We arrived at the Children's Hospital yesterday morning. Our first appointment was in the feeding clinic. We met with Dr. Belest (she is Case's new pediatrician here at Children's. Anytime he is having any kind of trouble or I have any questions I can call her and she can help me or direct me to who can.:). Case's speech pathologist, Heather, an Occupational Therapist, a Behavioral Specialist, Case's nutritionist, Stacy and an amazing nurse named Georgia (I LOVE HER!). The feeding clinic seemed very productive. They changed Case's feeding schedule to 5 tube feedings a day and no night feedings. I will run these feeds through his electric pump for 30 minutes each. I have a feeling some days it will feel like all I do is feed him but that's okay, it's my job and  I've got the best job in the world! It will be nice for Case to have a break from feeds through the night. We are also switching him to Pedisure 1.5 (it has more calories). We are hoping the retching decreases and eventually stops with medication and this new schedule. After that we had a 20 minute break for lunch then went to get him an Echocardiogram. That took 45 minutes and he fell asleep towards the end it was so sweet. We then went straight to a genetic's appointment. That went well, they are doing more tests for syndromes (surprise, surprise:). Genetic appointments always last a long time make for a long day. We stayed at the Ronald McDonald house last night and are staying again tonight. We met with the surgeon this morning. I changed his Mic-Key button, they took a sutcher out that was accidentally left in during surgery and answered my questions. We went straight to an appointment with Dr. Ruldolf (from Gastroenterology) and then to the lab for blood. It took a couple sticks and two nurses to get the blood they needed. After all of that Case is doing well but seems a worn out. He is so sweet and it was great to see a lot of the doctors, nurses, phlebotamists and all the other people here that love him.

Last night around 9:30 Case was really cranky and not going to sleep. When Case is that cranky I can't hook up his feeds because the crying combined with the continuous Pediasure will cause severe retching. I need to start feeds around 9pm so that they are done at the right time in the morning and don't interfere with the day feeds. I was sitting on my bed slightly discouraged with his crying and immediacy realized how blessed I am. Last year at this time Case was still an impatient. I longed to bring him out of his room and here at the RMH with me. I wouldn't have minded spending 100 nights here if I would have been able to have him here in the room with me. Last night I was so thankful. Thankful for Case. Thankful to be his mommy. Thankful that this is the journey I'm on and not another. Thankful to hold him here in the room even thought he was screaming. I was and am just so thankful.


2Corinthians 9:15 Thanks be to God for His indescribable gift!


 In the waiting room.
 Not so sure about the echo he is about to get.
 Waiting for the Genetic's doctor.:)

In the big "living room" on the top floor of the RMDH. He LOVED that car!!

Friday, January 13, 2012

A special kind of love.

Case has a special kind of love. A pure, free love. Since Case was boon he has been showing me how to love without judgement. He has been the cause of hundreds of relationships in my life. From doctors and nurses to moms and dads. One if my favorite friends that Case has brought into my life is a lady named Sarah. I met her at Wal-Mart. I was struggling to hold Case, manage Lainey and put my groceries on the belt. A lady behind me in line asked if I wanted her to hold him (it was Sarah:). I said, "Sure! Just don''t run, I worked to hard for him to lose him now.":) She laughed and asked me about my special Case. We became fast friends. We see each other at Wal-Mart from time to time and recently started talking on the phone. She is one of Case's biggest fans.:) One thing I've been shown lately is that one of the biggest blessings God can give us in this life is the blessing of friendship.

"May there always be work for your hands to do, may your purse always hold a coin or two. May the sun always shine on your windowpane, may a rainbow be certain to follow each rain. May the hand of a friend always be near you, may God fill your heart with gladness to cheer you."
- Irish Blessing

1 Peter 4:8


Above all, love each other deeply, because love covers over a multitude of sins.


Matthew 22:37-39

Jesus replied: " 'Love the Lord your God with all your heart and with all your soul and with all your mind.'  This is the first and greatest commandment.  And the second is like it: 'Love your neighbor as yourself.'




Medical update.


 We visited the cardiologist today and went to his pediatrician. The Cardiologist is from Pittsburgh but comes to the Altoona Hospital to see his patients every Friday. He is a really great guy and loves Case.:) Case is doing well heart wise and will get an echo at Children's on the 26th. The echo is to check for the PFO. He weighs 12 pounds now! YAY. As far as him refusing to eat by mouth, I had a long talk with his gastro doctor, Dr. Ruldolf. He is such a fantastic doctor! He said we don't want Case to loose all desire to eat by moth. He put him on a new medication that I give him 3 times a day 15 minutes before a feed. It is suppose to help him empty his stomach so he feels more hunger and should help stop the retching. He has been on it for 2 days and if it isn't helping lessen the retching after 5-7 I'm to call him back. 

Case is eating very little the last couple days, more then he was but nott much. We shall see what the feeding clinic at Children's hospital says on the 26th.:)

Playing at Cardiology today.:)

Wednesday, January 11, 2012

For a good cause.

Do you remember when I mentioned Lisa and her son Ramsey in a previous blog post? Ramsey was born on January 12th with a life threatening birth defect and spent 61 days in the hospital. Soon, Ramsey will be one! In honer of his birthday, his family will be donating 61care bags in 61 days to the Ronald McDonald House. The Ronald McDonald house is such a great place and means a lot to not only Lisa, me and our families but to thousands of families with sick children. If you like to help by donating money or items on the list click here. If you would like to bring items to me, I will get them to the Razzas.:) If you would like to contact me about bringing donations to my home, email me at: lizrae@gmail.com.

Thanks! You guys are awesome.:)


His grace is sufficient for me.


As you may have read on my blog before I feel like when Jesus blessed us with Case He gave us blessing and favor (the definition of grace:). Jesus made Case special for a reason. Instead of fighting this or wishing it to be different, Dan and I have embraced it. With that being said, I'll tell you the truth...filling these big shoes isn't always easy. I have weak moments which sometimes turn into days. These past few days have been rough. The retching continued and became more frequent and Case refused to take anything orally. I felt weak. I ran into some dear, sweet ladies at Panera Bread (two I new, one i didn't) yesterday and had a mini breakdown. I told them the days have been hard and I was tired. They were so sweet and loving. They hugged me. I felt Jesus' love through them and felt much better.  
I have never been a big fan of breaking down. It makes me feel weak. After I left Panera I got the song in my head, "His grace is sufficient for me."  Those are the only words I remembered so I googled them and this is what I found:

II Corinthians 12:9

And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness.

Wow. Just wow.;) Needles to say those hard days are behind me and I am so thankful for God's grace.

Saturday, January 7, 2012

Give thanks in all circumstances...

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~ Khalil Gibran
Hard to think of Case as a massive character. But he is.
He's had some rough nights lately. I would wake up to him screaming and sometimes retching. Case can't vomit because of the Nissen wrap. 


RETCH: noun: an involuntary spasm of ineffectual vomiting; "a bad case of the heaves"
It's no fun. He was having a hard time tolerating his night feeds. He wouldn't eat much during the day causing me to run 10-11 hour feeds at his max of 39 mls (a little over an ounce) per hour. On top of that his pump broke at some point and was putting extra into him. It was only a few extra mls per hour but was not good. We got his pump replaced which lessened the times he was waking to retch but he still couldn't handle the long feeds at max volume. Sometimes the retching would get so bad, I would open his stomach tube and let him "vomit" out of the tube. Gross, I know but it was necessary to release the pressure on his tiny belly. This all was very difficult for me. It's hard enough to have your child vomiting night after night but in a way this was harder. It only took one night of retching after the pump was replaced for me to call his surgeon. I left a message and got a prompt return phone call from the surgeon himself. I love Dr. Scholz. He is an exceptional doctor and has general care for Case. I told the doctor we were having problems and asked if he thought bolus feeding Case whatever Pediasure he doesn't take during a feeding was a good idea. He said yes. Bolus feeding is when I connect Case to a short tube (about a foot and a half long) with a syringe attached to the top. I pour Pediasure into the (open) syringe and hold it for 10-20 minutes until all the Pediasure has entered his belly. This is wonderful. It allows Case to get the appropriate amount of Pediasure during the day so I can run shorter feeds with less mls at night. It really takes the pressure off of me and so far the retching hasn't occurred (through the night) .I do find myself worrying sometimes about dumb things like, "What if he always has the Mic-Key button in?" or "What if he stops eating by mouth altogether?". Worrying has never bought any good, only harm. It steals my peace. I don't know what the future holds for Case physically but know that Jesus does and only wants the best for His sweet baby.

Jeremiah 29:11For 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. <= This happens to be one of my favorite verses.

Isaiah 26:3 You keep him in perfect peace whose mind is stayed on you, because he trusts in you.


Philippians 4:7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

“Do not fret—it only causes harm.” Psalm 37:8b

1st Thessalonians 5:18
give thanks in all circumstances, for this is God's will for you in Christ Jesus.


Case hooked up to a day bolus feed.
Case's nurse Jenny still comes to our house twice a week to check him out and get his weight. She is fabulous.:)

Friday, January 6, 2012

Grow, Case! Grow!!

Once Case was born and his health problems were addressed, the only thing keeping him at Children's was how little he weighed. A couple friends of mine (husband and wife) used to say, "Grow, Case! Grow!". Throughout his life that kind of became his chant. Lots of people say this to him often. Like I said before, having the tube in his belly didn't produce the results I expected at first. His gain was slow and he even had a loss since he came home from surgery. This week though, he gained 6 ounces bringing him up to 11 pounds 13 ounces. Awesome!! Getting him to eat enough has been a struggle his whole life. I've had to give this to God over and over. For three months I begged Case to nurse. I pumped, stored and fortified my breast milk until I couldn't any more. The whole time desperately trying to get Case to nurse. He would latch on sometimes and suck a little. But doing that too often would wear him out and cause poor weight gain. Eventually he wouldn't even latch. Finally there came a time when I realized it wasn't working. My milk was drying up and Case would not nurse. This was hard for me. You have to understand I was born a nurser. My mother did it. My sister is doing it. I nursed all three girls exclusively and really desired to do this with Case. There was a time though that I had to give that up. And it was hard. It wasn't that I had a problem with formula. I'm actually quite thankful for it. It's just that nursing was something I enjoyed with my daughters and had planned on doing with my son. Jesus showed me that Case was, is and always will be okay. No matter the feeding issue. Whether it be a tube down his nose. A tube in his belly or him not nursing the fact of the matter is that he belongs to Jesus and always will. I am so thankful for his growth regardless of how he does it how or how quickly it is done. Grow sweet Case. Grow!