My Family

My Family

Wednesday, April 27, 2016

Hips, Books, Bangs, and Motorcycles....Oh My!!

Well as you can tell by the blog title we have a lot that's been going on around here.  I joke with people that I wouldn't know what to do with a dull day but there's a ring of truth to that one.  I was sick this past weekend with a cold and honestly I got so fidgety just trying to rest and recuperate that I just gave up towards the end!

We've been spending a majority of our days at UVA in the Battle building.   The parking attendant knows me and we have had some fun conversations.  When you walk in there's a food cart during certain times and the nice lady asks me if I want my "usual" (a black tea).  I find humor in this and crack a wry smile as we chat briefly.  She always offers me a milk too in case my little girl needs it and tosses me a wink.  She remembers the panicked mama from several months before whose appointments ran over and "surprise" she forgot food.  When you have a typical kid no biggie, that's why there are golden arches.  A tubie child is a bit difficult to offer a mcburger to.  Since I don't have a mcblender in my purse.....

Anyway we have had some good and not so good appointments.  The good ones have been for my son mostly.  We went to UVA since VCU stopped returning my phone calls and my son started having medicine reactions.  I called my daughter's Dr in a panic and we were able to get things straightened out.  They also squeezed me into neurology.  Our Dr. was great.  She explained that VCU had great concussion advice, 20 years ago......   Unfortunately, science has evolved at a more rapid pace than they have.  Marvin was on unnecessary medication, bad advice, and mom did you notice that his left eye is wonky?  I'd have that checked out, let me get you a referral ASAP!  So for Marvin we now are off the bad meds, following a new protocol and gee guess what?  He's slowly improving.  Yay!!

For Cary Lynn she decided its really not fair that Marvin gets all the attention has of late, ha!  We found out that her IV/IG levels are lower than normal.  Which means a few things.  Yes it proves that she is dysautonomic and that she's medically fragile.  Unfortunately, it also means that exposing her won't give her a heartier immune system.  I know people always say that.  But in her case exposing her means chipping away at an already shortened life span.  So we have to keep her well.  Oh and her hips are dislocating.  Quite a bit.  From last years x-rays to this year there has been changes and it hasn't been great.  We don't have really good options.  The surgery she could get would need to be repeated often and because she isn't very mobile at this time the general consensus is we need to let her hips just fall out of socket.  It won't hurt her.  But it hurts me.  There is really nothing worse than being told there is nothing to do.

Unless you are being told that your child needs a new piece of equipment.  A lift.  A lift looks like this:
You basically put the person in a sling and it helps lift them.  The practical part of me says, well this is good and can possibly save my back.  The human part of me is having a really hard time with this. Another piece that screams your child is disabled.  Another chip in my heart.  Another quiet round of tears.  I'll adjust, it will just take a little time.  

So while the kids have managed to keep me fairly busy I've managed to squeeze in a couple of cool things.  I was asked to contribute to two books.  One being about special needs parenting and the other on adoption.  Both causes near and dear to my heart.  One is out as an e-book and the other is being assembled now as I write this.  Writing has been so therapeutic for me right now and telling our stories is important.  These projects are just volunteer on my behalf so no giant royalty checks, lol! But every word I write helps me find truth and helps me let go.  

There are also lots of good people out there.  Sometimes in places you don't think to look.  Last night we were blessed to meet some of them.  My husband tells me that you never know when you are going to meet angels in disguise.  Last night a whole herd of them blasted into our driveway on motorcycles.  They are called Guilty Ones and they came and spoke to our family.  We sat with a house full of gentlemen that some may never give the time of day to.  In living the life our family lives we've learned that what you see is not always what you get.  So while my son was enjoying the attention of two of the club members I got to share a little bit about our family.  To talk about our children and our day to day lives.  To share some of our needs as a family.  Plus it was just stinking cool to hang out with them!!  When they left my son cried for about 30 minutes because he was having so much fun.  So if you see these guys anywhere smile, wave, better yet talk with them.  They help families like ours and that means a lot.  

They journey we take isn't always an easy one, but it's the only life I've known and frankly, I don't think I'd do much different if I could (maybe I'd remember to pack Cary Lynn's lunch that one day, but hey it all worked out).  We take it as it comes and just roll around here.  It's who we are and what we do.  We also appreciate everything that others take the time to do for us to.  It's never dull but I wouldn't have it any other way.  

Sunday, April 3, 2016

Bang ups and Shake ups

Marvin is a pretty active kid.  Anyone who knows us or has spent more than three seconds with my son knows this.  He's a kid forever on the move.  That one kid when you try to take a picture you get blurry snapshots nine times out of ten!
He also likes activity and motion.  As you can see from exhibit A above any object that produces that desired outcome is his favorite.  I had to beg him to stand still for this pic!  For Marvin movement is something his body needs and craves.  It helps him be calm and regulate himself.  But a couple of weeks ago all that changed.  

We were at church.  My son attends Sunday School while we have service.  I went to pick him up from class and his teacher brought him to me.  She said that he got a little bump and cut and that he was fine.  A friend had hurt him.  

I figured there was some roughhousing going on but I would address it later.  I took Marvin to the car. He had started to cry and cry.  His head hurt.  Badly.  I noticed in addition to the gash there was a bump.  Because Marvin has Shaken Baby Syndrome we take head injuries seriously.  He was taken to our local emergency clinic.  We were told it was a soft tissue injury.  

Afterwards I was still noticing that Marvin wasn't himself.  I contacted his OT and between the two of us and Marvin we found out the whole story.  Marvin was picked up and thrown against a metal cabinet.  The OT told me he had a concussion.  We made an appointment with the Traumatic Brain Injury clinic at our local hospital.  Meanwhile Marvin went on cognitive rest at the recommendation of the Drs and his OT.

While we waited on the appointment I panicked on a pretty regular basis.  Yes, I know I'm supposed to have it all together, but I was scared.  Very scared.  My son forgot how to write his letters, cried for hours about the pain, and spent many many many hours on the phone trying to figure out if we were supposed to take him to the emergency room.  (Every time the local hospital said no that these were typical concussion symptoms only bring him in if he is throwing up or passes out.).  

The appointment came and after the good Dr tried to figure out how on earth you get a concussion in church of all places a plan was set in place.  It basically involves taking everything that my son loves and can do and telling him no.  

The first thing to go was TV and video games.  That was during cognitive rest.  We don't watch a ton of TV or play a ton of video games, but when you can't have them it makes them that much more attractive and desirable.  Think about your last diet.  Did you say, "Gee I really want carrots and kale!"  or did you spend more time trying to figure out how to get at that candy bar in the pantry when no one was looking?  So my son became more clever at trying to get at these things.  I finally was able to grant him limited access and of course now he isn't as interested. 

We also have to make sure that he gets more rest, he can't spin, run too much, ride a bike, scooter, skateboard, or unicycle, have too much light, noise, stimulation, and stay away from food after midnight.  OK not the food part, but everything else.  I mentioned to the Dr I would have more luck nailing Jello to a tree and teaching my cat to recite Latin.  As I mention this Marvin jumps off the exam table backwards to prove my point.  The Dr. didn't miss a beat and said he could loan me some Latin books to get started with my cat.  Haha.  

I will say it's been hard.  I'd love to candy coat it and say Marvin has settled in, picked up stamp collection, and has been waiting patiently while daily reciting his prayers for healing.  He's also taken up Gregorian chanting and knitting.  He's decided that the true path to enlightenment is found in hours of quiet meditation.  

No.  Just no.  What it has been is hard.  Marvin doesn't want to be still.  Ever.  He's frustrated, upset, and antsy.  When you take away things that a child needs to self regulate and don't find a proper substitution then you set yourself and your child up for failure.  

We are still trying.  Trying to find ways to help Marvin help himself.  He has discovered that he loves books on CD and we have been listening to those.  I put a shout out and have had all sorts of wonderful suggestions.  I plan on trying each and every one.  Thanks to a super creative OT he has some safe activities that help satisfy some of his cravings for movement and motion.  We also found an art class where he can do fun things and not overtax himself.  

Another thing we have found out is that our dog who enjoys licking shoes will not leave my son's side.  She has risen to the occasion of service dog.  She follows him from room to room.  She knows when he is dizzy and immediately moves her body in a way that corrects him.  If he sits down and puts his hands on his head she immediately comes and finds me and leads me to him.  Have you ever been shepherded by a Great Dane?   It's an experience.  But I feel better knowing that Noel has his back too.  

This is going to take time.  I wish I could say he'll be great in a week or so.  But it may take up to a year or longer for him to heal from this.  I'm not a patient soul and neither is my son.  There will be long term effects for this tragic accident.  The biggest one for me is will he be safe and protected when he's not with us? I know stuff happens.  He's a little kid.  But to have more stuff happen on top of stuff he's already had happen just doesn't seem fair to me.  I know I'll have to learn to trust that he will be OK out of our line of vision but that's going to take me some time.  

For Marvin it's been hard.  He's trying to adjust to a body that hurts more, has more limitations, and trying to relearn things all over again.  I've been really proud of him.  He hasn't always handled it gracefully and he certainly has been vocal about why he should be allowed to ride his scooter standing on his head while paying a video game, but he went back to Sunday School.  He was terrified but he did it.  That's courage.  He sat down with print outs of letters and spent two days relearning how to write.  That's persistence.  He has put together lego kits that a few months ago he couldn't sit still to do.  That's patience.   He isn't angry at the other kid for what happened and still wants to be his friend.  That's a good heart.  And for now that's all I can really ask for.