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.

Thursday, November 24, 2011

So thankful.

I am thankful for strength from within. For peace that passes all understanding. For being kicked out of my comfort zone and forced to be a better wife, mom, and woman. I am thankful for forgiveness. For the freedom to live without condemnation. I am thankful, Jesus for this past year and the countless blessings it brought me and this beautiful family.

Col. 3:15 - "And let the peace of God rule in your hearts... and be thankful."

Giving up.


Case's surgery went well! He got the g-tube and nissen wrap. It lasted about 2 1/2 hours. He has been doing well. A little out of it. The medication makes him sleep. He will start formula in an hour. He had Pedilyte through the night. They are taking things slow so his tiny belly handles it well. But he is a real trooper! Looks like we may go home Saturday as long as all goes well!:)

Tuesday evening was rough. Yes, me "the strongest women in the world" has weak moments.;) It is hard for me to give up. I still like things to go as planned. I had no trouble with bringing Case for surgery and staying till he is recovered even if that meant spending Thanksgiving here because that was the plan. Well, when they brought Case to a double room not a private room I was a little bothered but his roommate was a quiet 3 year old with a nice family. Okay. I could handle that. New plan. No biggie. At about 11 pm plans changed again. That boy went home and they brought a noisy, needy baby with an obnoxious beeping mechine in and HIS mother had the nerve to complain about sharing a room. I immediately judged her. I started a downward spiral that usually ends in me being completely miserable, beside myself in torment. I had to make a choice. Fight for control or give God the control (which is harder said than done). At some point through the night I decided His way is better then mine. It's not comfortable being "out of my element" but the inside peace that comes with trusting Him is a beautiful feeling. :) Oh and by the way, the mother next to us just needs love.

Tuesday, November 22, 2011

Hang in there, Baby.

So, as I've said before. God speaks to me in song. I don't usually ask him to but often find a song I haven't heard In months or more in my head. I slept well last night. Not a lot of hours but the sleep I got was peaceful and good. I woke up with bits and pieces of a song in my head. I googled it to get the exact lyrics and this is what I got:

Hang In There, Baby
Things Are Crazy,
But I Know Your Future's Bright

Hang In There, Baby
There's No Maybe,
Everything Turns Out Alright

Sure Life Is Up And Down,
But Trust Me, It Comes Back Around

You're gonna love who you turn out to be



That's not the whole song, just the important part.:) We are heading down to surgery soon!! Oh, boy!


Resting up for his big day.

Monday, November 21, 2011

Super Case.

We are at the Children's hospital now. Case's g-tube surgery has been changed to tomorrow. I will stay with him through his recovery. We should be here around 4-5 days. This little boy missed the "don't be an impatient on important holiday" memo. Oh, well..I'm sure turkey tastes the same in Pittsburgh! He is super. Super sweet. Super special. Super strong. Our Super Case!!




Saturday, November 19, 2011

A home away from home.

A home away from home.

We stayed at the Ronald McDonald house Thursday night. Case had a total of 3 appointments, blood work, a sonogram of the liver and a cookie swallow test Thursday and Friday. I was thankful for an inexpensive place to stay but the Ronald McDonald is so much more than that. It is a place with other moms and dads that have felt what we felt. Have cried like we cried. Have heard aweful news. Have heard wonderful news. Have seen miracles and ones that have not. Most of all the Ronald McDonald House is a house of many blessings. Almost every night generous groups, families and even Ben Roethlisberger  donate meals. There are toys and gifts for the children, free laundry facilites and always food and drinks for free. But the blessings I have enjoyed the most are the non meterial ones. Friendships have been one of those nonmaterial blessings. Mostly the one I made with Lisa. You can follow her inspiring story of her son who has overcome a life treating birth  defect and the trials that come along with it here. She is such a dear friend, a fabulous mother and a very strong women. We have become close since our meeting at the RMH. There is something special  about another mom who knows the trials and blessings of giving birth to a special boy. I learned and was blessed more in my stay at the Ronald then I could ever fully make any one understand.  Being there Thursday night reminded me once again what Case was put on this earth for a reason. To touch, to bless, to purely bring Gods love and peace to others and much more.  He brought much peace to the mommies with babies in the hospital and as always was dearly loved by just about everyone he came across in the RMH and the hospital. What a special Case he is.


*Medical update*
Case will have the g-tube placed (and possibly a nison wrap) December 7th (or earlier if there is a cancelation). This will require a 3-5 night stay at the hospital. Case has some trouble when he swallows and will be followed by a speech therapists. They also want us to thicken every bottle for awhile  We are still waiting for the sonogram results on his liver. Previous sonogram results show that his bad kidney is getting smaller (will eventually disappear). The good kidney still shows some dilation and will need checked again in March. His hypospadias repair is scheduled for march 2nd (that is the first of 3 posable surgeries in "that area"). Okay, I think that's it.:)


Pictures from the appointments and Ronald McDonald House.:)






Wednesday, November 16, 2011

I find I'm moving to the rhythms of your grace.

During my 20 week ultrasound (with Case) the tech said we were having a girl.  We went to our first second level ultrasound 4 weeks later in Johnstown. The doctor started seeing several congenatle anomalies. I went into the bathroom and cried. While in there I very clearly heard the word Grace. I assumed that was to be our babies middle name. I looked the word grace up and found it means "blessing, favor". I got an amnio that day and later was told we were expecting a boy. I was puzzled. I really thought God was telling me to name our baby Grace. That wasn't it at all. He was telling me we were experiencing grace (blessing, favor) and still are.

Dan wasn't able to come with me and Case to the doctors yesterday. I drove to Ebensburg and met a friend. The three of us then headed the rest of the way to Johnstown. While just Case and I were in the car I head the song, "Your Love is Extravagant". I was particularly drawn to the line "I find I'm moving to the rhythms of your grace". It's true . I'm moving right along in the midst of His blessing and favor with beautiful fruit. Sometimes I struggle but with His help I get right back to the rhythms of His grace. It was a peaceful feeling I got. The appointment was fabulously. The surgeon is a gem (sorry, I know that sounds goofy but he was:). We are to call Thursday to schedule the surgery (to place a g-tube). I feel really good, at peace and so blessed by His favor.:)

Tuesday, November 15, 2011

"In this world you will have trouble. But take heart! I have overcome the world.”

I will keep in perfect peace He who trusts in me. Isaiah 26:3

I've mentioned this verse before but I'm reminded of it daily. Today I'm taking Case to Johnstown to meet a surgeon about the posibility of placing a G-tube. As I said before, the g-tube doesn't bother me. At this point I'm practically ready to put it in myself.;) Case has lost weight in the past couple of weeks and I know that can't be good. My mind tends to wonder and worry,though. I have an app on my phone that has a short "lesson" each day.  It's funny how perfect today's lesson is. To sum it up, it told me not to worry. Jesus knows this big picture and has already taken care of today and always.:)  It's time to trust God completely. G-tube or no G-tube. Vomiting or no vomiting. Whatever this and every day brings it is God who is in controll not me. Sometimes people confuse trusting God with God fixing everything. I believe everything is going to be okay. And by "okay" I mean that I will blindly trust His will to be perfect. I will alow Him to do as He thinks best although it doesn't always meet my previous standards of "best". After all, Case is God's. :)

This verse is beautiful and sums up everything I was trying to say.:)


"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
John 16:33




Tuesday, November 8, 2011

I have been chosen.

I have been chosen to be Case's mother. What a wonderful job I have! Granted, I get tired and sometimes wonder if I'm the right girl for the job. But oh, what a blessing it is to be Case's mother! He is so sweet and peaceful. Lovely in every way. I couldn't ask for four better children. They are perfect for us. Dan and I decided we wanted children but God is the one that decided Meredith , Samantha, Lainey and of course, Case are the children for us. And for that I thank Him.

I some times find my self thinking about how much easier it would be if Case were born without a growth restriction, or any other anomalies. I am quickly reminded that I was chosen to be the mother of this special boy and I know that I wouldn't have it any other way. When we first started seeing that there were issues with our baby Dan looked at me and said, "Liz, I've been excited about all our babies but I think I'm even more excited about this one because God is teaching us and teaching others trough us and this baby."

Dan and I didn't choose for Case to have problems but we did choose to have a good additude and embrace whatever our tomorrow's bring with joy and peace. Thank you Jesus for the blessing we named Case.







If you have an extra 6 (ish) minutes, I recommend you watch this video. It's a great reminder of an EXCELLENT, simplistic principle that we all can apply to every aspect of our lives.



Tuesday, November 1, 2011

Oh G, what can the matter be?

I know those aren't the lyrics. But that's the song that's been in my head lately. Case had a pediatrician appointment  this past Thursday. His weight gain in the past month month was mininal. It's looking like he will need the G-tube. He now weighs 10 pounds 8 ounces. It's a lot of working getting him to eat and drink. It's exhausting.

I was rocking him the other night and thinking about the blood work we had done in September (with Genetics). We got the results in the mail Saturday. But before we got the results I was rocking him and thinking (worrying). I said to Dan, "What if the results come back someday and he has a horrible syndrome that says he won't live past 8 years old?" Dan said, "Then I would suggest you stop worrying and love every minute with him". What a good perspective. None of us are promised tomorrow or even the next minute. It's time we embrace the situation we are in (good, bad or indifferent) and go with it. Live like there is no tomorrow.

So, yeah...the letter from Genetics said all the tests came back normal. :) They will continue testing to find "the underlying problem behind all of his anomalies". I truly don't mind (anymore) them trying to find a syndrome. I like the Children's hospital, I love the people he deals with in Genetics and I REALLY enjoy spending the day in Pittsburgh with two handsome boys. So, test away genetics. We're having fun.:) And if someday you find something, that's okay. We are only given as much as God thinks we can handle. I just remind Him from time I'm not as strong as I look. Haha.

I love this little boy with everything inside of me and yet am at at peace with whatever is in front of him. It is an incredibly free place to be. So here I am, embracing tomorrow, regardless of what it brings.