A Very Special Case.

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!

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 hea...

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'...

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 t...

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 re...

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...

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,...

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 ...

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!

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

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.

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

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.

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.:)

"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 strong Move along, move along like I know ya do And even when your hope is gone Move along, move along just to make it through Move along Move 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" yesterd...

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.

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.