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.

Tuesday, June 26, 2012

He's got a little special in him.


Case did GREAT during his very busy two days at Children's. Oh, and it turns out I am fully capable of driving to, from and in Pittsburgh (who would have thought?:). He rocked his full day Thursday and still had energy to visit his buddy Ramsey in the hospital. Ramsey is my friend Lisa's son. Lisa and I met at the RMH while our boys were hospitalized in the winter of 2011. Sweet Ramsey had to have another surgery, and I was blessed to visit him and his amazing family during his recovery.

All of the appointments went well and our day ran smoothly. Jane, our sweet nurse, was wonderful to have along and really admired Case's strength and stamina. For such a little guy, he does beyond great. He didn't even cry when they took blood! Friday was also a great day for our great boy. We waited for hours to get his G tube changed to a GJ. That also went well. We were shown how to use it and told again we need to head straight to Children's if it gets pulled out. Like I said in my previous post, Case had a great weekend too! Probably the best in  a long time. He didn't vomit or retch much and seemed to handle the new J feeds very well. But Sunday night and Monday were rough for our guy.  He ended up retching several times Monday morning and bringing up stomach bile a few times. He had a previously scheduled pediatrician appointment so we took him. The doctor wasn't sure what was going on but hoped it was maybe teeth. Case does have teeth coming in and had a much better day today. While we were at the pediatrician, three little kids saw Case scooting with his backpack. They were very curious and asked their mother about him and his pack. She smiled at me and said to her kids, "That's a feeding backpack and that little boy has a little special in him." That lady may never how how special that made me feel and that her kind words made my day bright. She is right. He has a little special in him and is worth all the trips, all the appointments, all the time, all the money and all the vomit covered shirts, because I am raising a boy full of special and I'd have it no other way.

 "Oh, this is how it starts, lightning strikes the heart
It goes off like a gun, brighter than the sun
Oh, we could be the stars, falling from the sky
Shining how we want, brighter than the sun

I've never seen it, I found this love, I'm gonna feed it
You better believe, I'm gonna treat it better than anything I've ever had
Cause you're so damn beautiful"
Having dinner at the RMH with Ramsey's brother Reed.

Big man and his bag.

Sunday, June 24, 2012

So far, so great.

Case has had GJ feedings for 48 hours straight. I have to say it's going great. He doesn't mind being hooked to continuous feeds and is tolerating them fantastically! I am moving the rate from 25 mls an hour at 24 hours to 30 mls an hour for 20 hours. He is a pump free mam from 5pm till 9pm tonight.:) He has retched a few times when he ate a piece of pretzel or peach. His swallow study showed a heightened gag reflex causing him to gag, retch and sometimes vomit when he eats most solid foods. Honestly, if this is the worst thing we deal with in the feeding world, then good. It sounds like it can be desensitized with therapy and the OT (you've got your work cut out for you, Nicole;). Since the GJ placement Case has been drinking and eating some! He had 10-15 bitty bites of yogurt without any problems today! Yay! And his new found love is green Gatorade (he must know his Miss Jane drinks the same stuff;). His appointments went great! I will update you on those later but for now...the big guy is (hopefully) getting bigger and doing FAB on this new journey called the G-freakin'-J.;)

I know, the sippy is pink but desperate times call for desperate measures.;) When a tubbie wants a drink you give him a drink in whatever is close by!


Wednesday, June 20, 2012

Little man, big day and oh so thankful...



Tomorrow is a big day for our mini-man. It will start around 5:30 am when he'll be awakened, dressed and changed for the day. Around 6am his nurse  he and I will head to Pittsburgh Children's Hospital (Dan works). Once we arrive, we will check in and head to his spinal sonogram (around 9am). They are checking his Sacral Dimple (a dimple at the bottom of his spine) to see if it's tethered and Spina Bifida Occulta. Then we head to an 11am appointment with the surgeon that placed his Mic-Key and did the fundo. Next is an 11:30am appointment with Dr. Rouldolf (his GI). After that is a 1:00 appointment with his dietician, Stacy. Then a cookie swallow study. Just yesterday they added another upper GI. That will be next. At some point we will need to get his blood drawn. We will then check into the RMH (as long as we get a room) and spend the night. The next day they have his GJ placement scheduled and possibly blood work if Thursday is too crazy. Wow. That's a big day for such a little guy! Thank you all for your thoughts, prayers and love for our very special Case!




In my preparation for Case's appointments and his new "accessory" I am overwhelmed with thankfullness. I'm thankful we've got Children's, amazing doctors, God's grace and a fantastic nurse to come along when Dan can't (let me just say.  I LOVE this nurse! I couldn't have hand picked a more dedicated, harder working, just all around wonderful nurse for this little guy and I'm pretty sure she is in love with him too.:). I'm thankful that GJs exist and there is hope for this hurlde. I'm thankful for my "village" and all the help they've offered Dan and I in our journey.






Thank You for everything
Thank You for loving me 

It don't even matter what tomorrow brings
Well I will sing my

Thank You for sun and rain
For what You give and take away
For all Your goodness I will always say
Thank You" 





"Cause life is joy, life is pain
But the prayer on my heart will never change
I say thank You
Oh I'll say thank You"






"This is not the end of the road."

"This is not the end of the road. You don't want to see the end of the road...I have, and it's not pretty"-Dr. Ruldolf's response to me saying, "I just really feel like we are at the end of the road..." We're doing it (by we I mean Case). He's getting the GJ, this Friday. It's not the end of the road but the beginning of one. A new adventure. The GJ will help him grow. The food running straight into his intestines and bypassing his stomache means that it will absorb correctly. And if all goes well, the vomiting will cease, and Case will steadily and painlessly grow. This GJ will be put in at radiology while Case is awake. They will take the Mic-key button he has now out and put a new something (not sure what it is called) in. It will have 3 ports. One that feeds food to the stomache, one that feeds food to the intestines, and one to fill the balloon. If it gets ripped out, we can not put it back in. We will drive to Pittsburgh, and they will put it back in. The original placement is an out-patient procedure and will be done soon.

When I got off the phone yesterday with Dr. Ruldolf, I fought sadness. Almost like a sadness from failure. A failure to get him to grow. Well guess what, ladies and gentlemen, this is not my child, and I am out of control! (strong statement, I know. Please, feel free not to badger me about it but wait for my reasoning...) This baby was made by God and for God (as were our three girls). He is a loaner. Given as a blessing to earth. I didn't decide his future or his present, God did. And despite what it looks like, it is EXACTLY what God intended for him. I am out of control. I have tried countless hours to make the "food/child" relationship normal. But, guess what, it's not. And guess what else, that's okay. Case is alive. For that, I am forever grateful. Case is thriving and soon (with the help of a GJ) will thrive even more. The point is that it doesn't matter how he is fed but that he is fed, absorbs it and isn't physically ill afterwards. The feeds will start out at 25 mls around the clock. Yes, Case will be fed 24 hours a day. Not an easy task keeping a feeding pump, bag and whatever else attached to a toddler all day (and night) but Lord willing, we will be able to give him breaks from feeding down the road (a few hours here and there), but for now it will be continuous. After I got off the phone with the doctor, I called Case's feeding supply company and talked to a very lovely lady. I believe her name is Eenis(?). I  told her my son is getting a GJ and is very active. I asked if maybe (just, maybe...) she had a small pump backpack laying around. She hung up to see and called me back. "You are in luck! I have one, just one in the whole building! And I snatched it up! I'll ship it to your sweet boy in the morning." I told her I loved her (I was in rare form trying to process this new path) she laughed and told me I'm on a long road and so is my little guy. She said she imagined it was hard and sweetly comforted me. God bless Eenis for her encouragement. She has no idea how much she meant to me. Truth of the matter is, a GJ is not the end of the road or world but a new beginning and a new path that Case will not travel alone. He is a very special Case and is loved by many. For that, I am thankful. 




 He likes his big boy pump pack!
My Hero.

Sunday, June 17, 2012

The Adventures of a Traveling Tubie!


Our family has taken long trips several times before (always by car) but this past trip was the longest drive and the longest stay we've taken since Case became a Tubie. We drove about 10 hours and stayed 7 days in North Carolina  with extended family.  We also stayed in VA on the way down making it a total of 8 days. That means 8 feedbags, 8 Farrell bags, 2 right angle extension tubes (for all his feeds), 1 roll of medical tape (to keep tubes in at night), 8  Mickey-Button pads, 24 cans of Compleat Pediatric, 1 can of DuoCal, 2 empty bottles and caps, medications, syringes to flush and dispense meds, 1 emergency back-up Mic-Key button kit, his feeding pump and a large syringe with a straight angle extension- in case (God forbid) Case's only pump breaks, and we have to wait for a new feeding pump to be overnighted from Pittsburgh. Oh, and his Pumpkin Pack. Oy! That's a lot of stuff! And 95% of it can't be just picked up at Wal Mart if we leave it home.;) So, to answer the infamous question, "How do you travel with a Tubie?". You just do. You set aside an extra day (or two) to pack all his crap and you of course pack your patience, too.
  Vacation came and went. It was wonderful and made me even more thankful for Case's terrific nurses that take great care of him and his feeds, meds, etc. for 8 hours at night. I forgot how tiring that can be. It's amazing how as a mom you just adapt to whatever challenges motherhood may bring. There were lots of stares (NC isn't very "feeding tube aware") and TONS of attention for our adorable Tubie. One large family even stopped and talked to me and Case during a feed. Their cousin's daughter had a feeding tube. It was refreshing for someone to know about feeds.;) Any way, I snapped lots of pictures (just in case you are a visual learner like me) to take you through the Adventure of a Super Tubie!


In case you were wondering this is what all those supplies look like all packed up!

I didn't have anything thing to "prime" (when you pump feed you need to fill the long tube with formula so you aren't pushing air into Case) into so I primed out the window.:)

My back seat helper.:) We run 5 feeds a day for about 45 minute through the pump and one continuous feed for 6 hours at night. So, it felt like a lot of the car ride consisted of measuring, adding Duocal, shaking, priming, feeding and of corse...vomit. He retched and vomited 3 times before we even got to Brezewood (about 50 minutes from our home) on the way to the beach. We stopped at a rest stop in Breezewood so I could clean a vomit covered toddler and his poor, stinky car seat.

And the vomit didn't stop with the car rides. It continued in the hotel and once we got to the beach. Poor guy seems almost used to it by now.

Once we got to the hotel the first thing we did was SWIM! Case only swam for 10 minuted bofre it was time for another feed. So, what did I do? Naturally I hooked him up and his daddy held him at the steps. Being tube fed shouldn't mean missing out on life it's just a different way of living!






We didn't have his IV pole so we fed him with his Pumpkin Pack (the adorable monster bag you see) or without.

I even fed him on the beach! I of corse kept his stoma (the hole in Case's body that the Mic-key is plugged into) clean and sand free.

He ate. We ate.

One night the medicine port came open on his tube  (I forgot to tape it closed) and his feed ended up in his bed. Ew.
 Sleeping.
Venting.

Chilling with his oh, so cool crab Tubie Whoobie. They are also on  Facebook.





And that is all for this particular Tubie Adventure. I hope you enjoyed it and remember I am not a doctor just a mom of a tube fed child. I take the advice of some pretty rad doctors and use my maternal instinct when it comes to the medical care of my son. As always, consult your doctor when it come to your tubie's care.:)

Saturday, June 16, 2012

I won't give you more, more than you can take.


"I won't give you more, more than you can take. I might make you bend but I won't make you break."- Group 1 Crew.

Sometimes I feel like God mistook me for a strong women. During my pregnancy with Case when it looked like we would lose him, I  told Dan to give God the message that I'm not as strong as I look. We didn't lose him. He was born with many challenges and takes a bit of work, but he is alive and awesome. What I didn't realize then is that God doesn't give challenges to the strongest, most able but to the weak. When we are weak HE is strong. When all is comfortable there's not a whole lot of reason for God. It's the challenging moments, the narrow way that requires faith. Dependence on someone stronger. He is stronger.


 Case, my hero.



Some reminders....:)



Friday, June 8, 2012

I am the Mom of a Special Needs Child and I Rock.


I'll never forget the first time someone referred to Case as having special needs. I was standing in my kitchen with a dear friend, and she said it. The SN word. It caught me off guard. I really hadn't realized it up to that point and had a little trouble swallowing the word. But then I realized that a special needs child is not a problem, just a little more work than my "typical" children. That's all. He's not less lovable or less important just a bit more maintenance. ;) a few days ago I ran across an awesome blog dedicated to special needs moms and I decided to repost is here. If you have a few free minutes, read this post. You won’t be disappointed!
Here is the blog..

I was inspired, encouraged and moved by this beautiful blog post. I’ve read a lot of posts on special needs parenting and this was my favorite!

Some of my favorite lines:

And no, I don’t mean that you deserve a medal just for parenting your kid. That’s what parents do. We parent. Our kids. So yay, for you cause you stuck around? Hell no.
And I don’t mean to imply that I’m offering sympathy because your path is different – and likely more difficult – than most. It is what it is. And I’m not much for sympathy.
What I do mean is that you rock because of the WAY that you parent your kid. And the WAY that you choose to walk this path.


You rock because you raise your so-called typical children to know that typical is an illusion and compassion is everything.

You rock because you never forget to think small. If people around you don’t understand, you talk to them. Teach them.

You rock because you talk. Because you change hearts and minds and laws.

Special needs moms just rock, and I love that somebody gets us.:)


Tuesday, June 5, 2012

Oh, the blessings flow...


As I’ve said before, Case has changed me. Yeah, the birth of a child changes everyone, but in my experience the birth of a special needs child changes not only you and everyone around you, but it just changes EVERYTHING. I know things I never thought I’d know -like how many milliliters are in an ounce, what a Mic-Key button is, and that being a special needs mom is a blessing beyond measure not a curse. Since Case’s birth, I have grown and have met more people than I ever expected. I have formed relationships with people that I never would have, if Case weren’t Case. And ,oh, do the blessings flow!! This week has sucked a bit, and my boy is still vomiting a lot. I woke up Friday morning and decided that regardless of what the day had to offer, I was going to remain at peace and count my countless blessings, because they FAR outweigh the trials we’ve been facing. Around 10:00 a.m., I got a call from a new friend. A friend I never would have met if Case weren’t the very special Case that he is. I first met this new friend, Chris, back in May when she called me. I was sitting on the couch and answered the phone. She told me she is with a group called the Burgi Low Life Riders. This is a beautiful group of men and women.  In their “about section” on their Facebook page it says this: Burgi's Low-Life Rider Chapter was created in 2003 by a group of motorcycle riders and a few non-riders, who decided that instead of just taking their usual group rides for fun, they would turn their rides into a charity event.
Their Mission
During the first few years of the organization, the group supported the Railroaders Memorial Museum of Altoona. Then the group decided to move their mission forward and help support children of central Pennsylvania stricken with serious or debilitating illnesses. Chris told me that she heard about us from a lady  who saw Case and our family in Mirror moms. We arranged for her and another lovely lady from the group come to meet us. It was a great visit. All the kids were here, and Dan was off work so she got to meet ALL of us. We were real, raw. Dan and I walked them through Case’s life from pre-birth. We watch as their faces showed emotion and general care for the sweet boy they just met. They enjoyed us so much, and us them. It wasn’t until weeks after their visit that we would find out if Case was picked to be sponsored or not. Those ladies visited several families then took the info to the board, and the board voted. We really didn’t care if Case got picked or not. We were blessed with two new friends and another opportunity to share our great Case. The money would just be an extra special and totally AWESOME gift.
Well guess what! Case is one of the the two children the Low Lifers chose to sponsor! The big charity ride is September 2nd. I don’t have the all details yet, but I will keep you updated as I get the info. Also, you can click here to go to their website and Facebook page.. There will soon be a place where you can click and just donate if you want. Or you can be in the ride for a small donation.:) The money raised will go to Case and the other sponsored child. For Case specifically, the money raised will cover all costs not covered by his insurance,  all the expenses going to and from Pittsburgh every month for appointments and surgeries. And all the other things mini-man needs(i.e. adaptive clothing, special made shoes etc.)  :)  What a fabulous blessing this is! Oh, the blessings flow!!

Every day is a gift from God.
A friend of mine brought this to me at Children's Hospital after Case's birth (Thanks, Chris!). Every time I use this mug it makes me smile. It reminds me that God has given me a great gift. The gift of change. It shows me that even during uncomfortable times He is near and richly blessing me and this very special family.;)

Monday, June 4, 2012

Mini-Man helps his momma out.:)

Case is such a little big man! He doesn't let anything hold him back! Today I caught him throwing his dirty diaper away. I love this amazing boy!!!

Friday, June 1, 2012

Weight loss, blenderized diet and G-freakin'-J.

So, such as the feeding battle (sometimes) goes, there is no clear answer yet. No "easy route". No easy fix and no diagnosis. I took Case to his pediatrician Tuesday. He is concerned. Case lost another 4.5 ounces (in one week). In the month and 1/2  since Case was at the pediatrician he's gained (all in all) only 5 ounces. It's looking like the next step is a blenderized diet (through the tube). There is no malrotation (which sucks, I was really hoping that would be our answer). Dr. Chopra (pediatrician) and Dr. Ruldolph (GI Dr.) mentioned the possibility of giving Case GJ tube.

"A GJ tube is a radiologically inserted tube that is placed through the already established gastrostomy stoma and threaded into the jejunum in the x-ray department.
GJ tubes are used for children who cannot tolerate feeding into the stomach, usually due to gastroeshophageal reflux (GERD)."
This tube would stay in his body most the time. If the tube got pulled out we would go to Pittsburgh. We would run continuous feeds 24 hours a day (I think we would have some small breaks) instead of the 5 bolus's during the day and night feeds. The food would go straight to the intestines and nothing into the stomach. Blah. GJ's sound like no fun...BUT if that is what he needs, that is what he will get. Don't quote me on the details, I'm not a hundred percent sure exactly how this works and I am hoping and praying that if he needs, it it will work. That eventually they will find the problem and that maybe, just maybe this blenderized diet will miraculously make all of this go away..:)
Which takes me back to trust. I do trust that God is in control. That he doesn't always just make your problems go away but instead teaches, grows and blesses you along the rocky roads. I have been and continually am blessed. It's been difficult to ALWAYS trust. I cried a little in Dr. Chopra's office. I just want my baby to be okay but the truth is he is okay. He is lovely, and he is being taking care of. This is only a season, and He is stronger than any possible, terrible scenario today.

I've had the song "Your Hands" stuck in my head lately. My favorite part and the part that plays over and over:

"When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands"-JJ Heller, Your hands.
*disclaimer: please do not think that I am complaining or that I wish Case were any different. I don't like seeing this sweet boy in pain and struggling to grow even a little. Today I decided to blog with my heart on my sleeve and my prayers on my tongue.  ;)







You Hands.-JJ Heller