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.

Saturday, March 31, 2012

A very special Sami


Our second, Samantha Lynn McNulty was born  on October 6th, 2005. Samantha meaning "Listens to God". Lynn meaning "Beautiful".  She is super! Her gentle, submissive spirit makes her a joy to raise. She is in Kindergarten and doing fantastic! She got %100 on every test (ever) and really enjoys class. She is cute and funny, always smiling.:) Samantha loves. She loves her siblings and has a  special connection with Case. She loves her classmates and is always complimenting everyone. She can recognize the lovely in not so lovely situations. Anytime I am down she cheers me up. Whether it's a silly dance, a silly song or a sincere compliment, she is my go-to-girl on a gloomy day. Dan and I are so thankful for this witty, caring, loving lady. She is a very sweet and very special Samantha!
Sam and Lainey.






Wednesday, March 28, 2012

A very special Meredith.

As you read in yesterday's blog post I am contributing a few blog posts to the other members of this family. Today is dedicated to our first child, Meredith Rae McNulty.
Meredith was born on June 4th, 2004. Words can not express the joy and love you feel when you meet your first child. From the very beginning of Meredith's life it was apparent this girl would do great things. Her name means protector and a protector she is. She has been nick named Momma Mere-Mere by here sister's and some of her  younger cousins because of her protecting nature and motherly instincts. Meredith also has a commendable work ethic and the desire to love and help making her a huge asset to this very special family. When Meredith does something she alway wants to do her very best. She was home schooled up till this school year. When she started second grade this past September her biggest struggle was reading. She hated that it wasn't easy and I lacked patience. At the beginning of this school year she was reading at a kindergarten reading level. With countless hours of practice and unmeasurable amounts of hard work Meredith brought her reading score from 5 words per minute and 5% accuracy to 81 words per minutes and %99 accuracy (taking her from the bottom of her class in reading to the 12th best reader in a class of 28). Her teacher just told me today she uses her as an icon when she talks to the other students about reading progress. We are so proud of this little lady and admire her strong work ethic, servants heart, and sincere love for others. 




Meredith is playing basketball this year for the first time. She may not always know what is going on but she is always smiling.:)

Tuesday, March 27, 2012

A very special family.


I thought it would be fun to take a few days (or so) and focus on the members of this very special family. When Dan and I met and started dating years ago as 9th and 10th graders in high school we had no idea how blessed our future would be or that 4 little lives would change us for the better. I had no idea how 8 and a half years of marriage could bless me beyond measure and show me the beauty of retaliationship. Dan wrote it best in a resent blog post of his and I quote,

"One of the greatest joys in life is family.

Seems like a pretty cut and dry statement, but seriously, you don’t really understand it until you actually have a family of your own (spouse & lul humans).

I have been blessed beyond measure with my family. I could write a library on my wife (and no that’s not a reference to her being fat, but that would be a good one though). I truly admire her in every way. Her strength, focus, heart, courage, drive…..like I said, I could write a library.
I know it sounds cliché, but my kids are bitchin’. They are the best. I think I learn more from them than they do from me!..." 
To continue reading this awesome blog written by an awesome man click here. As the week goes on I will be dedicating some posts to the members that make up this very special family.:)



Thursday, March 22, 2012

An adventure.

Who doesn't love an adventure? We do! And it's a good thing cause Case is a tiny ball of adventure! Yesterday evening around 7pm I laid him in bed. He was super cranky so he cried for a few minutes at first. At around 8 I went in to hook up his feed. He was sound asleep with his Mic-Key button at the opposite side of the bed and a hole in his belly. When a Mic-Key falls out, (or gets yanked out) it's important you replace it immediately so the hole doesn't close. The hole had started closing making it difficult to put a new Mic-key in (after two tries I was able to get it in). He was fussy and the feed seemed to have trouble going in. I only ran it for a minute or so before I realized if the hole started closing the inside of the stomach could have too making the Mic-Key in the wrong place, etc. I called Case's surgeon (he gave me his cell #) but he didn't answer. I then called the dr. on call at Children's. We were told to go to the Altoona Hospital ER to have an ex-ray so the placement of the Mic-Key could be checked. Long story not so short, we were at the ER until close to midnight and the Mic-Key is in the right place.:) At one point case's surgeon and I were texting back and forth. He agreed that going to the ER was the right thing to do. He is a wonderful doctor full of care for our sweet Case. He says he doesn't know how I do it. I do, by God's grace. There is nothing else in this world I'd rather do.

As I sit rocking Case this evening, I thought of the adventure he is. Dan's dear aunt (one of many) often says "Think of it as an adventure" when life takes us places we didn't intend on going. Case is our adventure. I do not know where our adventure will take us next but I know that I can do all things through Christ who is my strength and so can mini-man.




He doesn't mind the ER.

Saturday, March 17, 2012

A very special poem.

Our sweet special boy named Case
Does all things at his own pace,
Would not eat or grow
His weight was too low,
So we prayed and relied on God's grace.

Making him eat was real tricky
So they had to install a Mic-Key,
From a bag and a tube
Come nutrition and food,
But some days it makes him real sicky.

Anomalies, Case has a lot,
Against all odds sweet boy has fought,
He's become a town hero
Regrets, we have zero,
Through this blessing I birthed we are taught.



I wrote this very special poem for our boy with the help of my friend Terri and her daughter. I entered it in a contest to win a pump back pack (see yesterdays post.:)


Thanks to all who voted yesterday. Case did not win but a very deserving little boy did.:) If you haven't liked Pumpkin Packs on facebook yet you can click here.  Like it. Look around. Buy an electronic gift card for your favorite tubie or sponsor a back pack for a needy tubie.:)


Speaking of tubes, Case's has helped him get to 13 pounds 12 ounces! He took 3 steps by himself the other day and is super active. Soon he will be 15 months old.;) 



Friday, March 16, 2012

Pumpkin Pack.

I made an adorable poem for our tubbie Case. Pumpkin Packs on facebook is running a contest. Go to their page by clicking on this link. Scroll down and find the poem I posted about Case. If you like my poem and it gets the most likes, he will win a backpack like this:
It is a special backpack that His feeding pump goes in so we can run feeds on the go!:)
Happy liking!!

Wednesday, March 7, 2012

God love ya!

I've come to the conclusion that the schedulers at Pittsburgh Children's hospital have decided to collectively make my life as difficult as possible. I have spent countless minutes off and on the phone for the past three days trying to make 9+ different appointments in the next three months or so. I've been on hold, disconnected, called back, and transferred more times than I can count. I've experienced high call volumes, snippy operators, a "brief satisfaction survey" (yeah, those must be picked at random cause I was OBVIOUSLY not satisfied!! Ha) and one automated confirmation with the wrong time. Granted, all of this was easily remedied with with a glass of wine and more chocolate than mortally consumable.

 I used to have the belief that if I said a little prayer,  asked for the right person, and called when Jesus wanted me to, I would avoid all the chaos. Not true. In the midst of all of this, I have been learning that life is littered with problems great and small. It is how we let those problems affect us that matters. One of my favorite authors wrote it like this:

"Every problem can teach you something, transforming you little by little into the masterpiece I have created you to be."


Today I called the hospital for the umpteenth time to correct a problem they created. Right before I hung up I said, "Thank you so much for helping me. It's quite a challenge some days dealing with 12 + doctors, specialists and therapists for my child with special needs. Sometimes it gets hectic." To that she responded, "God love ya!" and that He does!

Friday, March 2, 2012

Perfect peace.


Today was Case's second (and not last) surgery. I started to feel pre-surgery jitters yesterday. I thought his surgery was scheduled for 1pm today. About 6:30 last night the surgery department called to tell me different. Turns out his surgery was at 8:50am and his arrival time was 7:15. That meant we needed to leave home around 4:30am. Dan worked half a night then we headed to our second home. Once on the road I felt better. Jitters left, peace came. This special boy needs a strong momma and that strong momma (usually) is me.:) Every thing went great! The surgery totaled 3 and a half hours (crazy, right?). After surgery we talked with the doctor. All went well. Parts of what needed fixed are fixed and other parts will be fixed in 9 months or so. Could be 2 or more surgeries. Case was admitted to a room and is resting well.

I'll tell you what, I fell even more in love (if that's possible) with this AMAZING boy then ever. When I took him back to the OR for anesthesia he was wide awake and in good spirits (last time he was sleeping). They had me hold him on the table while the put him to sleep. He cried hard. It took a little longer then I expected (maybe a minute or two) for him to go to sleep. When I left I said a little prayer for him and heard, "I got this". :) peace immeadiatly overflowed within me. He's got this. There is nothing to worry about.

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