Thursday, October 28, 2010

Auto pilot.

Smile for the kids, talk about meaningless things, clean the house, walk the dog, wash clothes, take Adam to school, cook dinner, rinse, repeat. I guess I'm officially on auto-pilot. If this part of our life was a movie, I'd turn it off right now and take it back to the rental place. Or change the channel. I always knew life isn't cookie cutter. My life never has been cookie cutter, and that has prepared me -some what- for raising Adam. I work pretty well under pressure, chaos doesn't bother me. And, unfortunately, I've learned that when everything is quiet, and I'm alone, reality hits. Its nothing against anyone, I'm just private in my hurts and fears most of the time. Blogging is the first time I've let all this out and it really is therapeutic.
   Adams legs have been hurting him the past few days, he can't take anything for it because of whatever reason they don't want you taking pain meds when you're about to have surgery, so please keep him in your prayers. Surgery start time is 10 am on Tues.

Wednesday, October 20, 2010

Surgery date, and info

Surgery date is November 2nd .... start time is 10 a.m. Dr. Reisner said he is going to try to do the C-collar instead of the HALO device so I'm happy about that. Kind of. Just means that my job will be even harder on keeping him safe until the bone graph takes and the fusion heals. The thought of my baby's chest being open, a part of a rib taken out and then his neck and skull, oh that baby's neck and skull has always worried me. Right now I'm trying to keep my eyes on coming home and how much of a weight will be lifted when he's all healed up.
 There are times when this doesn't work and I find myself holding my breath. Lord, I don't know how I'm going to do this. My son, my baby, this sweet little soul who has always been wise beyond his years....He's never done anything to anyone. I can't and don't want to imagine life without him, yet we have to have a "plan" in case something goes wrong. When I heard his sweet little cry the day before easter 7 years ago I never imagined any of this.
Don't get me wrong, I wouldn't trade a day without him for a day with a different "healthy" kid. But when you have a child who has special needs, you do grieve, you do suffer a loss, yes your child is still with you but your hopes and dreams are still shattered to a certain extent. This surgery for Adam seals the deal. He'll never be catcher , or any other position on a baseball team, forget football, soccer, hockey, anything can hurt him. The hearing was obvious at birth. That was enough.  The genetic issues, was a little more than enough. Autism reared its ugly head, I have to admit that was unreal. Then Cerebral Palsy joined the party....the only thing I thought at that point was SERIOUSLY?!? and NOW. This. Wow. My life has turned into a lifetime movie. My child is an original. There has been and never will be another child like him. A part of me says "thank GOD!"  Another part struggles with knowing he'll never know a child who is his by blood. Anyway, how's that for ADD?
 Back to surgery. Please pray for him. Please pray for us....please pray for me, pray for God to hold me up when they wheel him away. He's got 2 grandmas and a baby brother or sister up in heaven and I pray that they hold his hand when I can't. I pray that God gives him the sweetest of dreams while the surgery is being done, and afterwards recovery is a breeze, pain will be minimal, and there won't be any drama.  Hopefully November 2, 2010 will be the first day of the rest of his life, a step forward. I hope he takes off running too!

Saturday, October 16, 2010

Surgery update

Surgery will either be on this coming up Tuesday , Or next Tuesday, as it looks right now. Dr Reisner said that Dr. Wruble will be the one doing the fusion part, he's supposed to be the best one to do it. They will have to cut open his chest to take part of his rib to form a bone graph, then they will do the rest of the surgery. He said it will be a very long surgery and to expect Adam to be in ICU for a time...I'm not sure how long that is, but I'm guessing more than a day. He said he asked Dr.Wruble if there was any possible way we could wait and he said no, he needs it done now. So that's where we are right now. We are trying to make this weekend a relaxing one doing things he likes to do. Prayers are appreciated, thanks so much for caring about our little boy.

Friday, October 15, 2010

A short one.

In order to keep my personal sanity, I'm keeping this one short.
Adams will have surgery before the end of the year. Considering it's the middle of October, it won't be long now. We very well could be spending Halloween, Thanksgiving, or Christmas sitting by our little boy's bedside. His 3 favorite holidays, other than his birthday of course! He thinks its a holiday anyway LOL! The girls have one recital this month, and one around Christmas. Ellie's 4th birthday is December 29th. Keith and Emily's birthdays are both in Feb. No matter what, for one of the kids, or all of the kids, this is just going to stink.  My heart just isn't in the  holiday season this year. We bought 2 pumpkins, haven't made them into jack-o-lanterns yet. Costumes are bought. No plans for  Thanksgiving, or Christmas. We haven't even looked at trees or gifts. Anyway...for the scientific ones.
C1 and C2 both slip. The vertibrae in your cervical spine are supposed to move about 5 mm when you look up and down. Looking up Adam's move 14mm when looking down 13mm. Normally, the doctor would go in and fuse the two together, and possibly a plate and screws on the back of the skull for C1 and a screw at C3. There is one problem when it comes to that for Adam. The base of his skull has grown abnormally, growing into the area where the spinal cord is. As Adam grows, as with all bones, this will grow too. We all know what happens when something damages the spinal cord. So, in order to avoid that, they have to cut it out. This is all deep inside the body, none of these bones can be felt. So Dr. Reisner is going to meet with the other doctors in his office and let us know the exact game plan and hopefully the surgery will be scheduled as well. If  I don't hear from him Monday by 12 noon, I'm to call him. This is all very meticulous work and we've been reminded over and over again how major this is. We could lose him, he could end up paralyzed, anything could happen. I have a hard time with this, of course. Little man has been through so much, I'm sure he'll come through this....God always has great things planned for us, I'm going to trust in that for Adam too.

Wednesday, October 6, 2010

well this blog ended up all over the place.

That's what this feels like. From the time I was 3 I wanted to be a mommy. If you asked me what I wanted dolls...and lots of them...My sister and I had LOADS of dolls, sometimes the same exact doll in triplicate. I never wanted to win the Nobel Peace Prize, cure cancer ( if love was the cure my Mama would still be here though), or even be a doctor or lawyer. I wanted to be a mom. 10 years ago if you asked anyone who knew me what they thought I would end up doing with my life they would say....driving a minivan full of kids to soccer practice. Well they got the minivan full of kids part right. I was 22 when I got pregnant with Adams. SO young, so naive. I had dreams of my child being the quarterback, pitcher, straight A student, scientist, doctor, get the picture. In the past 7 years every bit of that has gone down the drain. Now it seems that we're just praying he makes it to his next birthday. Sounds dramatic....but no. groundhog day. How in the world did we get USED to hearing how he shouldn't be here??? Why doesn't hearing how hard his life has been and will be just send us into the depths of despair? In  a perfect world it would be because we know God has him...and we do know that, but in this case someone keeps hitting the rewind button..... God always heals, always answers prayers in the way you want them answered. But no. I have to remind myself that praying for my son to be healed may not end in some lifetime movie-esque way. Our beautiful blue eyed, dark haired little boy one day might slip quietly away from us...and that could be his healing. But for now we're stuck in rewind...every day is the same, every week is the same, MRI again Friday, neurosurgery appointment again Weds.... They may decide to do a surgery that would save his life one day, or they won't. Who knows? I'm at peace with the fact that he's special needs, his hearing is as good/bad as its going to get, CP doesn't progress, his Autism seems to be at a standstill because of changes we've made to accommodate him,  and his heart physically looks fine, even though his EKG's always come back abnormal. He makes good grades with the accommodations set for him at school. But no. Somewhere between rewind and fast forward somebody stuck a "but wait there's more" in. I don't know what to do with this spinal thing. I've tried to shove it in with all the other things we've come across and either conquered or accepted as "Adams". It just does.not. fit. How? Why? WHO? Seriously? Does God do this? Would he send us this little boy to change us, and other people, then take him away like that? Really??? Are our lives going to be this constant state of wondering, hoping, wishing and praying, and dread? There are some people out there who probably think I'm just being melodramatic....but. When you sit there and hear a surgeon tell you that he is a "complicated case" and were looking at "major major surgery" that we'll have to "call any friends, family, and grandparents that want to see him just in case" especially so we "wont be alone" during Adams surgery...then...and only then...tell me I'm being melodramatic. When they put your son on restriction from anything that can put pressure on his spine because it could kill him, tell me I'm being melodramatic for holding my breath every time he falls down. Adam felt horrible for 3 weeks with no explanation. He still doesn't feel well but wants to go to school so I let him. Hopefully the MRI will tell us why. Maybe they can do the surgery already so he can be 7 again. Hopefully we'll find answers so we can breathe..Then maybe the kid can sleep until 7:30 on a Saturday without the rest of us drawing straws to walk down that dark hallway to make sure he's still breathing. Then maybe God can press play on our lives....instead of rewind. I'll update Friday when we get home and then Weds afte his appt if all goes well