A Very Special Case.

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. ...

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 no...

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 ...

"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 ...

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 ans...

"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....:)

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...

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 th...

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!!!

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 ...