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, August 31, 2012

A Hard Road.

I read an email from a friend. Not a close friend but a sweet girl none the less. She said there are complications with her pregnancy and she has a doctor in Altoona, Johnstown and Pittsburgh. God, did that bring back memories. She said that I am an inspiration and she follows this blog. Her experience sounds very similar to ours and my eyes filled with tears. She is on a hard road. A road not for the weak. A road that will make her strong. My prayer for her and her husband is that even though they will bend may they never break. Even as I type this I am overwhelmed with emotion for this sweet woman chosen for a special journey. I don't know details but I know that this isn't what they pictured when they saw the positive pregnancy test. And I know that they will need to readjust their focus. But from the bottom of my heart I tell you to never think of this as a curse. To know that you are loved. When people say, "as long as it's healthy..." know that they don't mean it and if they do they never met Case. May God's blessings pour out to this family. May they see strength within them that they never knew they had and may they never forget they can do all things through Christ who strengthens them. Don't forget to cry. You don't always have to be strong and no matter how hard it gets there is strength in the journey.


"Don't fear when you go through the fire
Hang on when it's down to the wire
Stand tall and remember what He said


I won't give you more, more then you can take
and I might let you bend, but I won't let you break..."




Thursday, August 30, 2012

A new normal.

  No one prepared us for life as parents of a special needs child. Sure, we knew Case was sick. We knew he could die. We knew he'd have to stay in the hospital awhile, but when I took him home I thought things would slow down. I thought he would "catch up" and eventually lead a normal life. Things didn't slow down. He's not catching up, and his life is anything but average. I found myself (after 20 + months) readjusting my expectations and focus. He isn't going to catch up. His tubes aren't going away anytime soon. His left kidney will never get better and for every 1 problem that we've figured out, two more pop up. Someday we will probably get a main diagnosis (syndrome or otherwise,) and it could be terrifying. Please, don't think I'm Debbie downer or a "glass half full" kind of girl. I'm simply stating reality.

 With all that being said, this is our new normal. I'm not mad or in denial, because that wouldn't change anything. The fact of matter is, we are blessed. Blessed beyond measure with a LIVE, beautiful, strong, happy child. All I desire for him is to live a long full life. His life is not typical (nor will it ever be). He will face challenges daily. Yes, there is always a chance for a miracle,but for now, we are living  a new normal and in order to stay sane, we are taking our crazy life one day at a time!:)



My tubbing Tubie.

Friday, August 24, 2012

Hard Questions.

The hard questions..I don't like them. I don't like asking them or hearing the answers. I'm not sure what's worse, answers to the hard questions or... "there's really no way to tell right now." Today was a long day. 8 total hours of appointments, one surgery scheduled, more possible reasons to operate, two doctors we never met (plus some "doctors in training"). Talks of an MRI, adding a new specialist (or two), statistics, hormone treatments as early as January, what's next if the vomiting continues, etc., etc. Case's Gi appointment was full of hard questions. The Dr. thought the GJ tube would be our answer. He really thought Case's weight would increase well, the retching/vomiting would stop and the pain/discomfort would stop. He was wrong and so was I. There is no reason why Case shouldn't be gaining weight on 880 calories in 24 hours. What is happening with his stomach is not an intolerance problem but rather a motility problem. He is switching meds, and has me venting Case (VENTING: When you attach a long tube with a bag at the end to bring extra bile, fluids and gas up and out of the stomach). I safety pin this vent bag to the outside of Case's pump pack. So, little man is attached to two tubes and two bags for 22 hours. Hopefully the venting, Med switch and calorie increase will help stop the vomiting/retching and add the weight. I really don't want to go onto "the "next step in the food battle". Anyway, the rest of the appointments went pretty well. It just turned out to be a long day. At one point I had a women say she didn't know how to entertain her child for two hours during his one appointment that one day (Oy). At another point, I saw a little boy that has been in the RMH for months and months... I felt like we were "home."  Case has a fan club in every clinic. He got a new fire truck from our Care Coordinator, lots of smiles and lots of hugs. Everyone was wonderful giving us pats on the back, snacks and drinks. It's like we went to visit some old friends. All in all it was a good day. Too much info and not enough caffeine but still a lovely day with my favorite boys.:)


 Snacks and drinks from the doctor.

 Lollypop.:) 
 The remote control fire truck Case's care coordinator gave him.:) 
 The decoration on our Ronald McDonald House door. How appropriate.;) 
Venting on the go!

Tuesday, August 21, 2012

You are Perfect to Me.

Dear Case,

  I don't care if you're never tall. It doesn't  matter to me if the world calls you abnormal. You don't need to follow a text book. I don't care if you're always hard work. I will grow weary taking care of you if I need to because you were made exactly the way you are meant to be  and I love that about you. I love that you are happy in your own skin. Don't ever forget about your inner strength, you're undying peace or your faultless Maker. Don't let anyone tell you you are less then perfect. Don't back down. Don't give up. Don't ever stop loving and don't ever start caring about what people think. You are perfect to me.

Love,

Mom



Friday, August 17, 2012

Be be be my BFF ‘Cause IDK what’s coming next.

It's a stupid song, I know but it makes me think of my RMH BFF, Lisa.;) You remember Lisa from my previous posts, right? She's the girl that I met at the Ronald McDonald House shortly after the birth of our sons. We connected quickly and have remained close though our struggles and journeys. Her son, Ramsey is a CDH surviour. If you'd like to read more about his story click here. We've cried together, laughed together, worried together and celebrated our very special boys together. I'm so glad she be be be-came my (RMH) BFF 'Cause WeDK what's coming next (sorry, I couldn't help myself).


Thankfully we don't live that far from each other and are able to get together frm time to time. This past weekend we had a cook out and a blast!



Me and Lisa.

The whole crew minus our husbands.:)

Case and his BFF by force, Ramsey.:)


Worthless Worry.

God, I hate worrying. It's like an involuntary emotion. It lurks up on me, and before I know it it's three am, and I'm playing in my head the words I'll say to my son's new insurance rep about how unfair his new policy is or my mind is still stuck on 6 million what ifs. It steals my peace. It steals my sleep and brings zero value to my life. A pointless, involuntary, annoying emotion that we could easily live with out. And yet, it seems no matter how many times I tell myself I won't worry, I'm doing it before I even realize it. I used to worry about things like stomach bugs and unfinished homework. Now I have graduated to unfair HMOs, birth defects, and kidney failure in a small boy.The newest prospects of worry are unresolved stomach issues in Case's tiny belly, slow growth, his HMO taking away some of his nursing (they're being stubborn dumb dumbs)...and the list goes on. I've concluded that worry is worthless, and if I allow everything that comes up against my sweet boy to worry me, I will lose my mind. I'm the first to tell you that I'm not there yet, but with every worthless worry I get stronger and more aware of God's grace in ALL circumstances even when it's not fair or easy. I am on this journey for a very real reason, and I won't let worry distract me from my very special purpose!;)
Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Philippians 4:6

 Pittsburgh has a nice view.:)
We took all the crazies to Pittsburgh Children's on Wednesday.
Good For Me lyrics
You bring a life to my bones
And a spring to my step
And a heart that knows what it means
To wait before You

And a laughter to my house
And a time to sing and shout
And a heart that knows what it means
To really trust You

When the shadow of sorrow comes
I will fall on the only One I know
Is the Rock that won't be shaken

'Cause it is good for me
To lay it down at Your feet
It is good for me to lay the good and bad
In the hands of my God


It is good for me
To lay it down at Your feet
It is good for me

You are the constant One
When my life is overwhelmed
And You stay the same
When all around is changing

And, oh, how good it is, yeah
Just to know the life You give
And my song shall ever be
That my God is faithful

And when the shadow of sorrow comes
I will fall on the only One I know
Is the Rock that won't be shaken

[ From: http://www.elyrics.net/read/w/watermark-lyrics/good-for-me-lyrics.html ]
'Cause it is good for me
To lay it down at Your feet
It is good for me to lay the good and bad
In the hands of my God

It is good for me
To lay it down at Your feet
It is good for me

And when I delight myself in You
You give me the desires of my heart
And when I confess, I think that You know best
Peace flows like a river and joy comes in the morning, and

'Cause it is good for me
To lay it down at Your feet
It is good for me to lay the good and bad
In the hands of my God

It is good for me
To lay it down at Your feet
It is good for me

And it is good for me
To lay it down at Your feet
It is good for me to lay the good and bad
In the hands of my God

It's good for me
To lay it down at Your feet
It is good for me, oh, oh

When the shadow of sorrow comes
I will fall on the only One I know
Is the Rock that won't be shaken

Wednesday, August 15, 2012

In the middle of my little mess...

"When he gets that tube replaced, he'll feel like a new man!" -Direct quite from his older sister, Meredith who is 8.:)

Mr. Tough-as-Nails is having another procedure today. His GJ has worked its way out of his intestines and into his stomach. No one knows when this happened but we found out via x-ray on Friday. Since Friday he has gotten progressively worse. He is retching and vomiting a little more each day and is experiencing pain. Yesterday morning and afternoon he was pretty uncomfortable. He pointed at his tube and said "ow" a few times. It is important that we get this tube into the right organ for obvious reasons. So, today at three he will head to the IR at Pittsburgh Children's Hospital and will come out a "new man" . Little man has been through a lot in the last 19 months and it seems things aren't slowing down. The pediatrician is adding another specialist for his feet and it seems little man takes one step froward and two steps back. Little inconveniences pop up quite frequently and he handles them with grace. Sometimes "in the middle of my little mess I forget how big I'm blessed" but am quickly reminded by his glowing smile!




I lost my keys in the great unknown
And call me please 'Cuz I can't find my phone

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
But I gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

45 in a 35
Sirens and fines while I'm running behind
Whoa

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
But I gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

So break me of impatience
Conquer my frustrations
I've got a new appreciation
It's not the end of the world

Oh Oh Oh

This is the stuff that drives me crazy
This is the stuff
Someone save me
In the middle of my little mess
I forget how big I'm blessed
This is the stuff that gets under my skin
And I've gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff You use

Oh Oh Oh Oh
This is the stuff You use 




Tuesday, August 14, 2012

"Just as long as he's healthy."

During my 20 something week ultrasound the tech told us Case was a girl. Around 25 weeks I let the Dr. talk me into an amniocentesis. The results came back xy. When I told one person in particular we were having a boy (not a girl) they said, "Well, just as long as he's healthy." Hmmmm. But what if he isn't? Should I trade him for a "better model"? Should I disregard him and try for a healthy one? No hard feelings, but that comment stung like a bee. And even now when I hear it, I wonder if people even realize what they are saying.  Don't get me wrong, I "get" that we all want our children healthy. I know that we pray and long for our children to live healthy, easy, "normal" lives. But sometimes, God has bigger plans for them. A life with sickness, struggle and special needs is not for the faint of heart, but it's a life chosen for my boy. He is a very special life. A life more than worth living and I am oh, so thankful for him.;)






Friday, August 10, 2012

"I hate delivering these."


"I hate delivering these." Says the UPS man this evening. He was referring to the cases of formula he had just brought with all the other feeding supplies. He went on to say, "I hate delivering these because I know the person on the other end is struggling." I was on the porch with all the the kids. Case was sitting on our bench with his pump backpack just chillin'. Not struggling but thriving. The Ups man realized that he was "the person on the other end". He squeezed his toes (and my heart) and said, "You're pretty cool, guy". Yeah, he's pretty cool. He's struggled and he's overcome. His body parts have/will be fixed but his soul is WHOLE. He's been sick, cut open, pinned down, stuck, stuck, and stuck some more. He's been monitored, tested, and considered deathly but death has nothing compared to his INNER STRENGTH. Today was one of those days. As I sit here rocking him, my clothes are covered in spit, throw up, meds, sweat and tears. But my heart and arms are full. Case had been struggling again.He had a long day. He's been retching and vomiting more and more so his Pediatrician and GI doctor decided to have him x-rayed (in Altoona) and sure enough the tube has (somehow) made its way into his stomach. He'll have to go back to CHP this coming week to get it pulled out and another placed. You see, his struggles don't last long because they are overcome by a peace that passes ALL understanding from deep within him. Today, at the Pediatrician's and the x-ray place I saw love flow from him as he toddled confidently along and people couldn't help but notice. He has a very special purpose!


 Playing in the rain with a shopping bag over his feeding pump-pack.:):)
 One month worth of feeding supplies. I vote UPS sticks a small surprise in deliveries like theses to keep it's customers excited about the UPS truck!!

Thursday, August 9, 2012

I know I'm a special needs mom because _______ & _______.


In one of the special needs support groups on facebook they play this game once in a while. It's like a roller coaster of emotions when I read the responses. Some are funny, some are sad and some make you hug you're kids tighter and count you're blessings... I can easily relate to most of them, and some days I have a "special needs mom moment." Like when I have more received calls from doctor offices and therapists than friends or family. When I tear up a bit after hearing of a child being cured, not because I'm not ecstatic for that child, but because I know Case will probably deal with most of his issues for the rest of his life. Or when in the middle of the night Lainey is coughing in her sleep, and I think for a second that I can shove meds though her Mic-Key... When I realize his nurses are my best friends...Oh, and how traveling round trip 6 hours through downtown Pittsburgh with my son and his nurse for a dermatologist's appointment seemed normal to me! :)
But then I realize something beautiful, through the good, the bad, and the ugly I will gain strength and remain a very special mom. ;)

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.





Friday, August 3, 2012

Little Trooper.

Grab a cup of coffee and use the restroom if you need to 'cause this may take awhile. There's a lot of little things going on with the big guy.:)

Weight:
Gah! Not great news in this department...he's had little to no weight gain and sometimes losses. Why? No one knows. Do I think he's the incredible shrinking man? I sure as hell hope not! ;) It's discouraging to see the numbers on the scale go down even though he's being fed 20 out of 24 hours a day. His dietitian is looking into adding a supplement to his tube feedings. He now weighs 14 pounds 8 ounces.

Milestones:
He's walking full time now! Yay and too adorable! He speaks very rarely, but communicates well through body language and grunts.;) Speech therapy may be starting in September. He eats and drinks a little each day, and I'm encouraged by that. By little, I mean a few bites and sips. He's been exhibiting some anxiety and clinginess to me. He has a hard time with people he doesn't see frequently and lately has been hanging (literally) on me. Nothing major just normal toddler behavior issues.:)

Health wise:
He's been retching each day again, not as bad as before, but more then he should be. Not sure what to do about that... He's still teething and still has a rash (the one he has had since April). It's actually spread some to his face and arms. Otherwise, he's doing well and keeping busy.:)

Appointments for August:
Dermatology, 8-7-12 in Wexford. Dan couldn't get off work so Case's FANTASTIC nurse, Jane is coming with us.
Pediatrician appointment:
8-10
Dental clinic (because his tiny mouth isn't big enough for all his teeth), 8-23-12 @ 9am
Urology (for surgery follow-up and to discus other issues), 8-23-12 11am.
GI (Dr. Ruldolf for the obvious and continuing issues) 8-23-12 11:30am
Dietitian (duh) 8-23-12 1pm
Endocrinology, (not sure what all will be covered) 8-23-12
And possible blood work etc.. All the appointments on the 23rd will be at Pittsburgh Children's
So, 8+ appointments and two therapies twice a week will keep our little guy busy in August.:)

In other news:
Case now has a Care Coordinator from Pittsburgh Children's. Can I just say she's my angel? Ha, but really she's only been working with us for a week and has de-chaosed my life some already! If you live outside of Allegheny County and your child has 3+ appointments at Children's each month, you may qualify for a care coordinator. I called her, and sure enough Case does qualify. I told her all the appointments that were made plus the ones that weren't, and she set everything up! She then emailed me all I need to know and will meet us the morning of the 23rd. Once the day starts, if any of the clinics are slow she will contact them and make sure Case stays on schedule. Holy Moley, where has she been all his life?! She was concerned we didn't have a break that day, I of course chuckled and let her know that we're old pros that eat on the go.;)
Case's genetic counselor called Tuesday. All of the tests that were out came back normal. The geneticist wants an MRI of his brain. They already want one of his spinal cord so, they'll combine those since they need to put him to sleep. Also, they want to check his "bone age" and continue vigorous genetic testing. With all of the complications Case has, there is no doubt in their minds that he has a syndrome. They just "haven't found it yet"...

How awesome is our boy?:
Very. He's a trooper and strong beyond words!
Can you see I found him itty, bitty, teeny, weenie, adorable beyond words shoes?! I left my house one night annoyed at the fact that the kids lost the only thing I had that resembled shoes tiny enough for his feet. It was the day before a planed trip to the amusement park that told me he had to wear shoes. I just happened to stop at Super Shoes desperate for "shoe like" things that fit Case so the workers would stay off my back. By god's grace we found these!! Size 2 Nike sneakers!