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.

Wednesday, February 29, 2012

You tell me, life will not always be pain free..

You tell me, life will not always be pain free....
*but*
You are stronger
Than any terrible possible scenario today
Come and save me
-Song lyrics that ring true to me.
 The life that is led by the mommy of a special needs child is not always pain free. It's the *not letting pain lead to suffering* (because He is stronger then any possible scenario that has ever been thrown at me) that keeps me going. And, oh, have we heard EVERY possible scenario.  He has saved me from the suffering. Saved me from overwhelming worry. Saved me from being taken down by these anomalies. Syndrome or no syndrome, big or small, sick or well, Case is exactly the child God desires him to be. We are not being punished but rather rewarded and made stronger by the blessing that he is and his special journey.


Galatians 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. 







Tuesday, February 28, 2012

Here we go again.

Case has his second surgery this Friday. This surgery is completely unrelated to the last. It will be the first of possibly 3 total surgeries to fix his severe hypospadias and other issues with his boy parts. It will require at least one night stay in the hospital. Although this has been scheduled for months, it feels like it has snuck up on me a bit. Time is flying, I must be having fun! Really, I am not nervous or scared but when I think of it I get butterflies. Maybe it's the fact that I'm not sure if it will be one, two or all three procedures and will not know until the surgeon calls out to the waiting room to tell us. I won't know how long he will be under until then. Maybe it's the fact that I'm excited (weird, I know) but I'm actually looking forward to it. Children's and the Ronald McDonald House have been our second home and I'm looking forward to going back. I'm praying for a quick recovery and hoping the pain is manageable. After all, I hear that "area" is pretty sensitive.;)

More great case news:
He is 13 pounds 7 ounces! He is trucking along at a steady pound a month gain. Also, he was approved for at home nursing care for up to seven 8 hour nights a week and one 8 hour day. Yippee for me!! I see sleep and a clean house in my future.:)

"They're gonna fix what?!?"-Case

Thursday, February 23, 2012

I surrender all.

Tonight while I was rocking sweet Case I was thinking about his feeding issues. He maybe takes a few bites and and ounce on a really good day and by day, I mean 24 hours. I was really wanting him to eat again. While I am thankful for the tube, I desire a bit of normalcy when it comes to food. As I rocked Case I spoke to him, to his belly specifically and told it to empty, to grow, to be hungry again. Sounds little silly, I know but when I was pregnant, I would put my hand on my belly and speak healing to every part of Case's body. It worked for his heart and maybe for some other issues. I would end those prayers something like this, "Jesus, these are the desires of my heart but above all I desire your will to be done." That was a scary prayer to pray. I gave this baby to Jesus. I find myself  (sometimes daily) giving Case to Jesus. Every time I worry, every time I fear, I take him back. Then out of my peace-less-ness, I realize I need to give him back.;)

Tonight while I rocked thinking of these things, I heard the song, "I surrender all". That's really it. I surrender all. Jesus is in complete control. I don't know what His will looks like but it's where I want to be.


Lyrics to I Surrender All :
All to Jesus I surrender
All to Him I freely give
I will ever love and trust Him
In His presence daily live
All to Jesus I surrender
Humbly at His feet I bow
Worldly pleasures all forsaken
Take me, Jesus, take me now,
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all
All to Jesus I surrender
Make me Savior wholly thine
May Thy Holy Spirit fill me
May I know Thy power divine
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all
I surrender all
All to Thee my blessed Savior
I surrender all




Wednesday, February 22, 2012

My Mary-maker.

I used to joke about being a Martha. You know, in the Bible where Jesus was visiting Mary and Martha. Martha was running around the house, crazy busy and Mary was sitting at Jesus' feet. Martha was irritated that Mary was sitting while Martha was busy getting things done for Jesus. Martha complained to Jesus and he said,  “Martha, Martha, you are worried and upset about many things, but few things are needed—or indeed only one. Mary has chosen what is better, and it will not be taken away from her.” I used to be busy. Too busy.

Case is helping  me become a Mary. I stop all the time and smile while strangers admire him. I've spent hours waiting in waiting rooms and doctors offices. But most of my "Mary time" (the quite time of worship and prayer) is often spent sitting holding or rocking him while there is "much to do". Dishes and dusting can be done in the morning. Case and the girls are much more important. Being the mother of a very special boy has helped me slow down and smell the roses. It has taught me patience and the importance of relationship. After all, "choosing what is better will not be taken from me".:) I am thankful to Case helping to transform me into "a Mary".

Luke 10:38-42.

Case sleeping and getting a feed.:)

Monday, February 20, 2012

Focus.


When I feel surrounded by troubles. When I feel weak. When I'm too tired and  too over whelmed to take on my responsibilities, I readjust my focus. I am not strong enough. He is. When I am sad. He is joy. When i am troubled, He is peace. He made Case in His image. He made him my son. The only way I can get through life with out losing my mind over small and big problems his to focus on Him.

I read a short devotional today and this part really stuck out:
"You will not find lasting peace in the world around you, in circumstances or in human relationships. The external world is always in flux-under the curse pf death and decay. But there is a gold mind of peace within you waiting to be taped. Take time to delve into My resting presence."

So to answer the question I've heard a thousand times, "How do you do it? How are you not overwhelmed?" That is how. I "tap into His gold mind of peace."

Colossians 3:15 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.

Colossians 1:27 To them God has chosen to make known among the Gentiles the glorious riches of this mystery, which is Christ in you, the hope of glory.


Monday, February 13, 2012

The good, the bad and the yucky.


When Case was tiny and in the NICU I knew that if he didn't eat and grow he would get a G-tube placed. I was relieved that he was sent home tube free. I don't know why the G-tube made me uneasy back then but it did. Maybe it was the unknown of it all.

Well, at age 11 months we bit the bullet and he got the dreaded tube. After 11 months of forcing, begging and pleading with him I stopped fighting the inevitable and buckled up for the G-tube journey. I have to say, I am very thankful for it. Without it Case wasn't thriving enough.  He was loosing weight and looking sickly. He now is gaining around a pound a month and has filled out nicely. The G-tube is a wonderful gift that has enhanced his life. That's the good.

The bad is that what he eats by mouth has dropped significantly. It's almost like he knows the eating by mouth is hard work for him. He'd rather just sit and be fed through his trusty tube Also, with feeds as frequent as they are he is rarely hungry. Some day down the road we will start focusing on feeds by mouth but for now we rely on his tube to sustain his beautiful life.  Oh and one more "bad". Clothes! He can't wear those cute zip up pjs and it's a pain in the butt unbuttoning onesies all the time to hook him up to feeds. A friend of mine and I are thinking up some ideas on how to put "Mic-key pockets" on his clothes.;) I'll keep you updated on that.:)


So now, for the yucky. If I got a dollar for every time I poured Pediasure on my lap, spilled it on the floor or forgot to close the medicine port I'd be a millionaire. One time I forgot to close the medicine port (a little "hole" with a cap at the end of the G-tube to put his Meds in) and his Pediasure leaked all over the crib. I checked on him in the middle of the night because he was crying but just patted his back and didn't notice it was open. By morning, him and his bed were covered in the "feed" thar was suppose to be in his belly. Poor baby. Also, if I'm not careful (which, generally...I'm not) I end up getting stomach juices on me by forgetting to close or clamp something. Also, we had another accidental Mic-Key button yank out last week. This time there was no need to rush to the ER. It has been long enough that I can now place new buttons on my own. Just because I know how to place a new Mic-Key in an emergency, doesn't mean I want to!;)

All of the bad and yucky aside, I have grown to love his Mic-Key and am forever grateful for that life-saving device.;)


It turns out there is a feeding tube awareness week! I just missed it! It was February 5th-11. I suppose it's beter late then never.;) I have listed some links to some resources if any of you are interested:


http://www.feedingtubeawareness.org/
http://www.bellybuttonsandbelts.com/ I plan to order Case some of these soon.:)
Really cool "tuby jammies".


Saturday, February 11, 2012

I get to be the one.

For as far back as I can remember I wanted to be a mom. When our first child, Meredith was born I finally understood the undeniable overflowing love that fills your heart when your baby is placed in your arms for the first time. I love everything about motherhood. From pregnancy to the fist day of school. Sure, cleaning up vomit and hold hands (and entire tiny bodies) during shots aren't the most comfortable experiences in the world but they are part of my job. My wonderful, beautiful job and I wouldn't trade a second of it. Even though it took days before I held Case I still felt that overwhelming rush of love the minute I heard his beautiful cry. When they pulled him out of my belly we were uncertain of his future. I didn't know if we would bring him home from the hospital. I wasn't sure if Dan would ever teach him how to ride a bike or if he would ever help me bake cookies. All we knew was that we wouldn't take one second of his life for granted. The same concept applies to our daughters. Jesus made me the mother of 4 beautiful children. I have the best job in the world!

I heard this song this morning and it took me back to the day of Case's birth. The beautiful, uncertain, blessing of a day.


Well hello.
Little Baby.
Your eyes have never seen the sun
You should know
Little baby
That i am the lucky one

I get to be the one to hold your hand
I get to be the one.
Through birthdays and broken bones
Ill be there to watch you grow
I get to be the one.

Don't feel alone now.
Little baby.
Do you hear me singing you a song
I can't wait to show you
Little baby
How to crawl
How to walk
How to run

I get to be the one to hold your hand
I get to be the one.
Through birthdays and broken bones
Ill be there to watch you grow
I get to be the one.

How does someone so small
Hold my heart so tightly
I don't even know you
I love you completley

I get to be the one to hold your hand
I get to be the one.
Through birthdays and broken bones
Ill be there to watch you grow
I get to be the one.

I get to be the one to hold your hand
I get to be the one.
Through birthdays and broken bones
Ill be there to watch you grow
I get to be the one.



Tuesday, February 7, 2012

Central PA Live.

In case you missed it...Here is our Very Special Super-Star!

Watch Case and his mommy's interview at their home.:)

Watch Case, his mommy and his daddy on the show!

As you read in one of my previous blogs you read that Case and I would be on Central PA Live yesterday evening. If you missed it, you can watch it on the website. It was a blast!


Saturday, February 4, 2012

Friday, February 3, 2012

Very special times.

Since Case was born we've spent countless hours in rocking chairs. First it was the rocking chairs in the NICU then the ones in the step down unit  (if you can even call them "rocking" chairs. They were more like "slightly moving, cushioned chairs".:) and now it's the two rockers in my home. I love rocking this boy. He's so soft and cuddly. I love his smell and his sweet voice when he babbles but one of my favorite things about rocking him is listening to the songs that play on my phone. Since those early days at the NICU I played songs while I held him. Lately, I've been playing a "radio" on my phone. I quietly pray, listen and cuddle. I treasure these times and have them often.
Since we got home from our last trip to Children's Case had some of the hardest days feeding wise. The volume was just too high. The retching got violent and frequent and was often followed by some vomit which meant lots of cuddles and rocking sessions. After three days of these hard feeds I called his dietician. She helped me break the feeds up into smaller portions and I started the night feeds again. This brought the retching and vomiting down some but feeds continue to be a struggle.
All of that aside, I will always hold our special times close to my heart and will continue to learn, rock and listen to what this boy and his maker have to say to me.:)

This song "What Love Really Means" is one of my favorites and it plays offten during our very special times. I particularly like:

"I will love you for you

Not for what you have done or what you will become

I will love you for you

I will give you the love, the love that you never knew
"





I am so loved...

Wednesday, February 1, 2012

A very special super-star.

"I wouldn't change him, even in my hardest moments. I'm so thankful for him just because of all the love he has brought," Liz said. "He's considered disabled, but I think he's perfect. I wouldn't change him because he's just so cool."


Yep. That's me. I said that and it's true, "he's just so cool!". Our family is in an article in a local magazine called, Mirror Moms. I was contacted a few weeks ago and did an over the phone interview with a lady named Kristy. The article is called, "Ronald McDonald House helps families with sick children". You can read the article hereI speak briefly of Case and our time at the RMH. I was also contacted by a lady named Dawn, from a local t.v. show called "Central PA live." She asked if I would like to be on the show, I said I would love to. Her and her camera man came to our house this past Monday. I did an interview while he recorded and then he video taped our very special super-star in action. Case sped around the house getting into drawers and playing with toys. I will be on the show Monday the 6th. It's on WTAJTV10 at 4 pm. They will also air the footage they got here. The whole experience is a good one. We've all enjoyed being a part of sharing this very special story. One question Dawn asked caught me a little off guard. She asked me why I decided to share Case's story with her and Kristy and all of you. I paused thinking, "Hmmmm, that's a good question…" My answer went something like this: "I've seen the hurt on mom's faces when they realize their child is going to be born different. I want them to know that just because a child is a little different doesn't mean they are a problem. Case is not a problem he is a blessing." I mean that when I say it. I wouldn't change Case if I could. I would keep him exactly the way he is. Perfect.