A Very Special Case.

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'...

  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 ...

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 proble...

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

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.:)

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 co...

"When he gets that tube replaced, he'll feel like a new man!" -D irect 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 ...

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.;) ...

"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...

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 ...

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 s...