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, October 26, 2012

Such is the life of a special boy.


Just like anything, being really special has a price. Along with the other sacrifices a special boy doesn't always get to celebrate Holidays at home. So far, Case and I have spent Christmas and News Years Eve, Christmas, New Years, Thanksgiving, one of my wedding anniversaries and soon Halloween at Children's Hospital. The scheduler from Neurosurgery at Children's called today and told us Case's surgery is Monday. This Monday at 6:15am. He'll be an impatient 5-7 days after surgery and will need to lay flat on his back for 24-48 hours. Dan will be working off and on but I'll stay with the big guy the whole time. Here's to hoping they hand out candy at Children's!:)
Our Ghostbuster is going to bust through his surgery!

Thursday, October 25, 2012

Oh HMO..


Oh HMO, you are a necessary evil. You started annoying me when you took the 8 hour day nursing care away from me because "I don't need it". Then, you decided not to cover ANY of the cost associated with Case's generic test (The Whole Exome Sequencing test). To top it off, you require an authorization (taking up to 72 hours and causing a missed dose or two) of the medications Case has been taking for months and still may charge me full price. I miss Medical Access. You are a thorn in my side. I can't help but think you are the start of an even more terrifying "health care bill" that could potentially be detrimental to say the least. However, I am thankful you are covering all of his procedures and appointments so far. Please don't stop doing that. You are not impossible, just difficult. But at anytime, feel free to go away and have Medical Access step back in your place. End rant.
I am aware that regardless of how difficult you are or how many headaches you give me, in the end, "everything is going to be okay".

Monday, October 22, 2012

Dear Husband who Stuck Around.

Dear Husband who stuck around,

To you. The one I pledged my love to almost 9 years ago. You are pretty special. You're still here. After all we've been though. For better or worse and lately things have been worse more than better. Thanks for sticking around when most would have run away. Thanks for embracing the "special needs dad" role like it's what you were born to be. Thanks for defying the odds and preventing our marriage from becoming a "statistic". Thanks for watching all four kids (even the one with the beeping feed pump and leaky drain tube) so I can get out before I go nuts. Thanks for loving me even when I've already gone there (nuts). You're admirable. You're the hardest worker I know. Thanks for working SO hard that you've made it possible for me to be here, home (it's where my heart is). Thanks for wiping my tears, being my soft place to fall and showing me even the strongest of souls cry. Thanks for telling me I'm the best even when I feel like like worst. Thanks for listening to me complain over and over about the same thing. Thanks for forgiving me when I snap, yell and bitch. I know you don't feel like you do a lot when you work till 5 and fall asleep at 7 forgetting to take the trash out but you do. You stuck around and when the going got tough you got tougher. I'm proud to be you're wife and thrilled to be soon celebrating the better and the worse, the sickness and the health of another year.<3

Love,
You're ever grateful wife





Sunday, October 21, 2012

Sometimes, faith is all you got.


I had a bad day Saturday. Sometimes, I have those. Those days where I just want to take a 3 week nap and wake up with less stress. Ha! Dan (my husband and father of our children.;) Got a promotion to assistant manager and transferred to a store about an hour away. So, on top of the phone calls, paperwork, tube feeds, Case's appointments, surgeries, raising all four kids etc. I'm trying to sell a house and move. The stress barometer was way high. I was having one of those "God, I must look stronger than I am...." moments. It seems like problems come one right after another with our special Case and it's hard to watch your child hurt. As I was feeling sorry for my self, I got a sweet message from a sweet man. A man that I admire and hope to get to know better (Hold up. Before you text your friend to tell them I'm considering cheating on Dan I think you should know this is a relative that I'll be living closer to after the move and I'm looking forward to spending more time with him.:). Part of his message said to hold on to my faith cause sometimes faith is all you've got. And with that my focus adjusted. It went off of myself and my stress and onto the big picture. I have faith. Faith that this is ALL part of a big, beautiful plan. A plan that often doesn't make sense. A plain that I only see a small speck of. A plan that is making me stronger. A very special plan.

Calm. I know I'm way behind on the "Photo a day October" but today is calm and this is calm.:)

Friday, October 19, 2012

Forward...MARCH!



So, yesterday was a long day. I got a call from a receptionist in Neurosurgery Tuesday and they wanted to see Case at 8:45 yesterday already. Dan had work so Case's wonderful nurse came along. As we were packing him up in the car his GJ tube got pulled out. Only a CHP doctor from Interventional Radiology can put a new one in so we were in luck! We were already planning on going there.;) A short one appointment day turned into around 5 hours at Children's. The Neurosurgeon said the brain abnormalities are not related to the tethered cord. They are a whole different issue but he didn't seem concerned. He'll keep an eye on them and may need to fix his Foramen Magnum (the hole that his spinal cord goes though is too small) via surgery but only time will tell. He also said releasing the cord won't help with any of his digestive issues or cure the vomiting at night. Because, he's sure I'm aware of the fact that my son had "MANY issues that aren't all related". Yeah. I'm aware... He sent us up for pre-opp blood work and will have his scheduler call to set up the surgery within the next week or two. Post surgery he will be an impatient 4-5 days and will se]pend 24-48 hours flat on his back without sedation (I wonder if the nurses will mind me having a flask of straight whiskey to get me through those first 48 hours?:).  I have to say, I'm pretty sure you could feel my disappointment when the dr said the only thing releasing the cord will do is help with bladder control, help his toes straighten up (they are bending in towards his arch) and fix his walk (I was unaware that it was broken...;). Just between the hundreds of you and me, I'm still holding onto hope that this will help stop his continuous night time vomit...if the GI has seen that happen with other patients, maybe Case will luck out. So, after the meeting with the less-than warm and fuzzy neurosurgeon, ten vials of blood being pulled out of little guy and a quick sandwich Jane, Case and I headed into IR to get our big guy a new tube. That went well. All in all yesterday was a good day with great people. I was able to see my tiny NICU friend and my RMH-BFF, Lisa Razza. I fell asleep at nine and woke up when the nurse knocked at 10:15. I felt like after almost 22 months of this it was apparent that I can't "expect" anything. That things will go as they go and I'll just keep "forward marching". Sometimes I'll trip and sometimes I'll nap but forward we'll go towards the main goal of raising our very special Case exactly the way he needs raised. With lots of love, patient and of course, coffee.;)
"His" name tag was a hit.:) One of the doctors in the elevator said he was pretty sure he wasn't Elisabeth and he was POSITIVE he wasn't a parent/guardian.:) It was cute.
His old GJ.

Monday, October 15, 2012

Life. Is. Beautiful. Period.

Life. Is. Beautiful. Period.

I met a handsome little boy the other day. Like Case, his pre-birth diagnosis was grim. Let me just tell you, when I walked into his NICU room my heart melted. He is so beautiful! Like Case, he also would have been a "candidate for medical abortion". I don't want to get political. I don't care if you're pro life or pro choice. I'm not trying to change your mind but my heart aches at the thought of babies like Case and my tiny, new friend not having a chance at life. I felt his strength (he gets it from his mom.;) and his purpose. He was knit together in his mother's womb. Yeah, his pattern was a little different (like Case's:) but different isn't defective. Different is beautiful. Different deserves a chance at life just like the rest of us. This boy is going to grow up to do great things. I can feel it! He will change minds, touch hearts and bless lives. I know because I have one. A special little mister and I wouldn't change him for the world. And to his momma ('cause I know you'll read this:). Keep it up! You're doing great! You're strong (you get it from your momma;)
Flash back! Here is Case when he was a tiny NICU patient.:)

Sunday, October 14, 2012

Number 14.



14. That's how many specialists the boy has now and that's with counting the "feeding team" as one specialist. If you add his pediatrician and therapists it would be 18. Case's GI doctor called Friday with his MRI results. Case has a Tethered Spinal Cord, a small Foramen Magnum Stenosis and some abnormalities of the brain stem. The GI thinks the brain problems are possibly being caused by the pressure of the cord pulling down on the brain. As Case grows his spinal cord is staying put (because it is connected to vertebrae) and pulling down on his brain. I will learn more when I meet with his new specialist, Neuosurgery. I'll make his appointment tomorrow. It sounds like he'll need to have Neurosurgery to "release" the cord. This pressure is most likely what's causing his night time-early morning vomiting (from the GI's perspective). When he lays down at night he is putting pressure on his brain and in turn he is vomiting. Constipation, slow motility and vomiting are all problems that can be associated with a tethered cod. Releasing the cord doesn't mean all of that (which Case continuously struggles with) will go away but it will probably help.
As I listened to the kind, gentle voice of Dr. Ruldolf (a man I've grown to love and respect) I felt my mind start to spin a bit. "This is a lot for a little boy. Things aren't slowing down. NEUORSURGERY?! That sounds scary Ect." Those thoughts were quickly interrupted by images of children who are fighting for or who have lost their lives (on my Facebook wall, of corse) and I remembered "it could be much worse." This is a very special journey where we are being bent but we will not break. Case is very alive. His struggles are minor compared to some. I quickly caught my mind and didn't allow it to go into self pity. Now, I will tell you I had a comforting and blessed day yesterday. Three different friends dropped by with three different blessings (not to mention a few blessed phone conversations). You see, I have these people in my life that fill me up with coffee, food and love when I'm going on empty. These are my go-to-girls and they are very special!!

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish it's work so that you may be mature and complete, not lacking anything.
—James 1:2–4
Case had two IVs during his MRI.
One of which he quickly pulled out.



Ready to go home.

Wednesday, October 10, 2012

Emotion.

Of MRIs and blessings.

It's been a busy few days of phone calls, paper work, vomiting and life. Case is still struggling through the night and into the morning. Dan has been working out of town and commuting 2 hours round trip making the days a little longer. Don't get me wrong, I'm not complaining and feel more blessed then usual. It's just been hectic here and tonight I prepare for a long day at CHP tomorrow. Big guy will have his first MRI (he'll be under anistisia for the whole thing) then we'll sign papers and give blood for the Whole Exome Sequencing test with genetics. It will take up to 4-6 months to get results. Tomorrow is a day of firsts and familiars. We've been at this for awhile and yet we're starting a new "adventure". We have no clue what kind of things they'll find with the MRI or the Whole Exome. This. Is. Out. Of. My. Control and a bit out of my comfort zone but it's part of the journey. I'm along for the ride. As I rock him to sleep (right now) I feel him breath and I feel his special. He's different. He's strong, a miracle and instead of fighting our very special journey Dan and I have chosen to embrace it and in turn we are greatly blessed. So, tomorrow as you push though your busy day think of this special guy and whisper a prayer if you'd like as he takes a new turn in his journey.

Tuesday, October 9, 2012

Red.

His face is red, the monsters on his coat are red and the fire truck at the playground is red. Today Case had physical therapy at the playgroynd again. He loved it!

Angle.

Yesterday was exhausting BUT I snapped an "angle" photo.

Sunday, October 7, 2012

Light.

I'll admit, I totally forgot about today's photo of the day, light. Everyone was sleeping here around 8:45 and I was washing dishes while I waited for Case's night nurse to come. I went up to check the sweet baby and realized he threw up. He always makes noises before he throws up because of the Nissen but I must not have heard him. Anyway, as I was cleaning him up I noticed the light at the end of the street that always peeks in through his window and keeps me company. I've grown fond of that calm light.

Saturday, October 6, 2012

I'm thankful for...

All of my children. Today we celebrated our second oldest child Samantha's 7th birthday at the zoo!

Friday, October 5, 2012

Shadow.

The shadows of crib rails while sweet Case sleeps. His naps have been lovely and peaceful lately unlike his nights. They've been restless and littered with retching/vomiting. Sleep sweet in the shadows, baby.

Thursday, October 4, 2012

Where You Stood and Lunch Time.

Since I didn't see the "A Photo a Day October till the third I'm catching up.:)
"Where I Stood". When Case is "naughty", he stands in the corner (mostly for my entertainment. It's to darn cute!)
"What's for Lunch" is on his back.:)

Move Along....

"He's gonna make it, I can just tell!"

Lately I feel like that song, "move along" by All-American Rejects.

"When all you got to keep is strongMove along, move along like I know ya doAnd even when your hope is goneMove along, move along just to make it throughMove alongMove along"

We've been busy in the McNulty house. My days have started early with retching and vomiting. It seems just minutes after the nurses "clock out":) the boy starts retching (again). He's been retching 4-8 times a night for about a week now. The doctor thinks it's the antibiotic he was on so we'll cut it and hope he has more peaceful sleep. So, my days were starting between 5:30-6. And it seemed I just kept going, moving along. It was like I was running on a half tank of gas and not stopping to "smell the roses". Sometimes it feels like I have to do that to "keep up" with everything. As I was " moving along" yesterday (stopping at Giant Eagle while Lainey was at preschool) I got caught off guard by a new "Case fan". Case wanted to walk into the store, so I let him. I held his tiny hand and he walked "tall" and proud backpack and all. A man passed him, looked at him, smiled and said, "He's gonna make it! I can just tell!". He's right. He's gonna make it and bless a lot of people on his way. I may miss some bathes and forget to switch the laundry at night but that's okay. It takes a village to raise a child and two to raise a special one. Lately I've been reaching out to that village and it's been reaching out to us. My kids are gonna make it. They're durable. I can't screw them up too bad. Even during the weeks that I mindlessly, and exhaustedly "move along" Case is going strong and he's gonna make it!;)

What You Read.

These stupid signs are what I read today. I read them offtan as I wait at the pharmacy drive through to pick up Case's prescriptions. I'm not a huge fan of this pharmacy. More times then not the "pharmacy staff members" give me an attitude. Just this morning she was rude to me about something that was their fault. I don't change pharmacies because it's not worth my hassle and I figure the next pharmacy could be just as annoying. I suppose if a rude pharmacy staff member is the worst thing that happens today, I'm in pretty good shape. After all, my boy is here and happy.

Wednesday, October 3, 2012

Photo A Day October.

I'm behind on blogging about the sweet boy but tonight is going to be short and sweet. I decided to do a "photo of the day challenge" to give you all a look into Case's very special life. I'm a few days behind but today is, "This Happened Today". Case is an incredibly busy toddler and a tiny (almost) terrible two year old.:) Here he is on our deck. He had just carefully placed cheese balls (none of which touched his lips) and wood pieces in some sort of playful design. He's one busy boy.