Dollywood with physical needs

After going to Disney last spring, where they treated us so well, I have my standards set pretty high.  And, Dollywood met them!  The hardest part of the trip is that Dollywood is hilly by nature.  There are 1-2 hills where you really are pushing up or down, but for the most part, the terrain is pretty manageable.  We rented a wheelchair when we arrived for just $10.  They also have ones with motors for adults.  We then went to guest relations and got a pass to take us in the "Q-bot" line.  Their version of the fast pass line.  It was not a busy day when we attended, but the wheelchair does not fit through the turns of the regular lines, so it was Q-bot for us all day.  We never waited more than a few minutes for any ride.  The kid section was great and we spent a lot of time there.  We rode some of the other coasters, but held Griff off of a few of them since we are still working on his core strength.

Though it was freezing cold the day we went, we had a great day and I would return again in warmer weather.  There was lots of handicapp parking at the front of the park, but I can imagine that it might fill up on a busy day.  But, they have trams running in all the lots so you don't have to walk a long distance.

I would recommend Dollywood and found it very manageable with my son with CP.

Disney World with the kiddos!

We just got back from our first family trip to Disney World in March, 2013.

Disney so takes care of their guests with special needs.  We rented a stroller, a bit pricy, but worth it.  Next time I hope to bring our own wheelchair.  We got a pass to put on the stroller and could wheel it up to each ride since he has a hard time walking independently and with steps.  Up to 6 people can go on a ride with that pass.

Griff, 6, could ride all of the rides, though we opted to not try Space Mountain as he needs to gain some core strength.

We went to both Magic Kingdom and Hollywood Studios.  Both were fun and Griff got to be just a regular kid.  He also got some extra attention from some of the characters and one of the workers got Goofy to dance with him.  It was so sweet and fun.

We stayed onsite and rode the buses all around.  The buses had ramps so he could walk right on with his walker.

I know the policy has changed some since we were there in the spring.  A friend of mine just went and I am going to try to get some details from her to share.

The Bus

       Well, many of you know our ongoing struggle to get the kids on the bus together.  Basically, they can all ride the regular bus, but only Griff was able to ride the bus for the kids with special needs.  At this time, he can not ride the regular bus because if he were to fall out of the seat, no one could help him back up.  On the other bus there is a driver and an aide.  There is absolutely no way Griff would get on one bus while his sisters rode another.  So began my quest to get all three on the same bus, the bus with kids for special needs (which I thought would be a simple request.)  Ummm, wrong.  So, 6 weeks later, a few rounds of faxed paperwork, showing up at the Board of Education, communication with several people in several departments, and countless emails - APPROVED!
       If you know me, I don't give up.  I fight for a cause I believe in.  One thing that I have learned being the parent of a special needs child is that some things are just harder.  I thought it would be easy to get them all on the same bus.  I mean, point A and point B are the same.  What seems common sense to me, sometimes requires paperwork, permission and just not settling for no.  While I got so frustrated during the process, I stayed nice and persisted.  So, fellow parents, whether your kids has special needs or not, fight for what you believe is right.  When you see that short bus, think about my kids and all the special kids that ride the bus.  Think how lucky they are and how a simple bus ride really does take a load off these parents.  And, give an extra little thought to the kids that have to get on the bus at 6:45 in the morning to get to school that starts at 8:00.  We opted out of the morning ride because of the early pick up.  But, some parents have no choice.  My eyes open more and more every day.
     And, the best part...pictures!

~Martha

Intensive Therapy - Round 2

And, we're off, finishing up the end of our second week of intensive therapy at Vanderbilt.  Schedule coordination gets a little crazy, but it is so worth it to see all of Griff's strength grains.

Therapy is work-play.  He is organizing he cars, but the whole time standing up and down.  He is a little OCD on some of the order things, so the organization and arrangement takes a bit longer so each car can be in a perfect like :)

One thing, that you didn't see much of in the last round of posts, is Griff walking with his sticks/crutches.  He actually practices with just 1 crutch some.  See below.  This was the first I had seen him walk like this.  I actually ran out of hall space.

You know, we don't know what the future is for Griff.  Will he walk independently, will he need sticks or a walker, or will there be a need for a wheelchair?  Quite possibly, there will be a time and place for each.  But, what I have heard from the teachers, therapists and administrators at Gower, is how strong he has gotten.  Many have seen him begin there at age 4 on his walker.  Now, he just uses the walker at the end of the day if he gets tired.  He's getting there.  He is stubborn and somewhat independent. 

And, lastly, Griff had a little accident while at school using his sticks.  A classmate got his foot tangled with one of the sticks while Griff was walking and Griff fell face first.  Both top teeth (still baby teeth) ended up coming out, one immediately, the other the next day.  He's got a cute lisp going.

We welcome Spring Break!  The kids are off for 2 full weeks.
Martha

Watch for a sweet message from Griff at the end.  Love this boy!  He just makes my heart smile.
~Martha

OK, video test here.  I uploaded a video of Griff at therapy yesterday so you can get an idea of what he does and how far he has come.  I'll try some more later if this one works.  We are at the end of an intensive therapy at Vanderbilt.  Griff has had therapy 3 days a week for 2 hours a session for 6 weeks.  Plus, he has has an hour of horseback therapy and starts swimming on Friday.  This intensive has been so awesome for him.  He is doing so well on his loft strands (walking sticks).  And, has taken several steps with no assistance in the past few weeks at therapy.  This is Ms. Laura in the video with him.  He gets so tickled that he falls at the end.  But, what is not in the video is that he pushes Ms. Laura over with the ball and just starts cracking up.  See the below picture.

In the above picture Griff walks to Ms. Laura with his hands and the she pulls the green band.  It snapped at the end.  Then Griff flies back.

Happy Weekend All!  More later.
Martha

A Photo Trip down MEMORY LANE

I've been super nostalgic lately.  Of course, the kids starting Kindergarten has really made me think about how far we have come in the past few year.  But also, a friend of mine had a little girl at 26 weeks and I have been reliving our NICU days with every one of her CaringBridge posts.  And, one of our favorite NICU doctors is retiring and I was looking through itty bitty baby pictures trying to find a photo of Dr. Rojas.

So, take a step down memory lane with me...

Griff at just a few days old.  1 lb, 14 oz, 16 inches long.

Gabby, 1 lb, 6 oz, 12 inches long.

Gracie, 1 lb, 8 oz, 12 inches long.

We've shown this one a lot, but it was our 1st family picture, March 27, 2007.  The kids were just 2 1/2 months old.  Seems like forever ago, but I remember this moment so vividly!

January 6, 2008.  Griff, Gabby and Gracie celebrate their 1st birthday!  It is Gabby, Griff and Gracie from left to right.

2nd Birthday, 2009.

Gabby on her 3rd birthday.  Love that face and smile!

Griff, some things never change :)

Sweet Gracie.

Their 4th birthday is Ms. Leah and Ms. Lindsey's class.

And finally...

Gracie strikes a post on the 1st day of school!

Gabby loves colorful clothes!

Perhaps his last 1st of school picture with his walker...!

I'll update soon with how well they are doing at school, Griff's walking stick progress, our new intensive therapy and the girl's dance class.  When we took the photos at the top of the page just after the kids were born, the start of kindergarten was the furthest thing from our minds.  I remember looking at the 3 pound baby in the incubator next to us and just dreaming of the day when our babies would be 3 pounds.  Now, Griff is pushing 50 pounds and is getting so tall! Gabby is about the same height and Gracie, well, she can fit into the tiniest spot and just cuddle.

Have a great one!
Martha

Cast Camp is Over

I took home one very happy boy this afternoon!  Someone was so glad to get his cast off.  It seemed to itch him much more this time and he did get a big bug bite right where the cast hit his upper arm.   So, Griff came home with a goody bag from camp.  What does one get from constraint camp?  Well, there is a pencil sharpner, 2 pencils, a sucker, plastic coins ( I have to say that this one seemed weird at first, but great for the pincer grasp on the right hand), 3 packs of homemade play-doh (great for squeezing w/ righty), a whistle (might hide this one) and a toothbrush and toothpaste.  They sent home an adorable picture of him, a t-shirt he painted , a clay something he made (not sure what it is, but you know mommy is keeping it!), a picture with feathers...  This is great because the boy does not like art.  Most of his school art has 1 crayon line through it and that is it.

Here he is with his cousin Caroline.  You can see where his sisters "signed" his cast.

An ambulance was outside therapy yesterday.  He was so excited he could hardly stand it.  He ran straight to it!

And, while Griff was at therapy we went and got some cupcakes and had a little picnic between storms.

A big thank you to Vanderbilt Pediatric Therapies.  We feel so fortunate to be a part of this study, free of charge!  We have the best therapists - Laura and Lindsey!  We have had several therapists at VU and they are all awesome, I even taught one of them years ago.  The 8+ camp therapists and volunteers are all so wonderful w/ 12 kids at this camp.

~Martha

Check out the cast on Griff's arm.  We are fortunate enough to be a part of a research program at Vanderbilt and take part in a week long constraint therapy or, as Griff calls it, "cast camp."  The basic premise is that you cast the good arm and force him to use the weak arm, kind of like you would treat lazy eye.  There are about 10 kids in the class, all his age, all with casts.  It is really cute to see them all with their brightly colored casts and so great for Griff to be with other kids that have the same struggles.

He won't tell me anything that he does, but I managed to get a schedule so I know what he is doing.  There is a lot of sensory work...hands in dry rice, pasta, etc.  They have played with clay, paper mache, and made pudding today (to eat, not stick their hands in.)  They play games, eat lunch and snacks with their weak hands, brush their teeth...  I challenge you to eat a few meals with just your weak hand.  Gabby tried last night and didn't make it long, but it did give her some insight to what Griff is going through.

I'm not going to lie, cast camp is hard on all of us.  It breaks my heart that he has to go through this and it will probably be a yearly event.  Ideally it should be done for 3 weeks straight.  They are cutting the cast off  and adding velcro to it so we can continue to use it.  We slept maybe 3 hours this first night because he was so antsy and kept asking us to take it off.  Tim and I have both been wacked a few times by accident.  Meals are a little more messy and no swimming or water table.  But, we already see improvement in his right hand and the timing, right before school starts, is great.

If you have a few extra seconds, would you click on some of the advertising on this blog?  Our goal is to raise enough money to cover one of his horseback therapy sessions.  I actually signed up on Fab.com, one of the ads that scrolls through, and it has some cool stuff.

One more pic...

You never know who is hanging out in the halls at Vanderbilt Pediatric Therapies.
Martha

Just a year ago...

Tomorrow marks the one year anniversary of Griff's big surgery last summer!  Hard to believe it has been a full year.  This time last year we were meeting with Dr. Parks in St. Louis preparing for the long week ahead and hopeful for all the benefits from the surgery.

This is Griff just before surgery last summer.

Here is Griff just 2 weeks after surgery with Ms. Laura.  His legs were so weak that he could not support his weight.  We spent about 2 months in a wheelchair before he could use his walker again.

So, where are we now, a full year later.  Well, Griff has started walking with walking sticks at therapy!  Our goal is to be done with the walker by the end of the year.  He really needs practice on the stick.  He needs minimal support, but does lose his balance some on the sticks.  I'll get a picture of him on the sticks next week and post.  Ultimately, we still think he will walk independently and the sticks are certainly a huge step towards that.  The walker, while it provides great independence, is really a fun toy for him.  He sits on the back, does tricks, glides down hills on it, and is a human bulldozer when he has it.  The boy can really fly on that thing.  The problem is, he uses his upper body more than his legs.

Therapy continues to go well and we have settled into our summer routine.  Hip Hop was a no go for Griff.  He would have nothing to do with it!  But, he is getting his regular OT and PT twice a week + Saddle Up! for therapeutic riding + Saddle Up! for hippotherapy + swim lessons.  Tuesday is his therapy day off :)  Above is Griff on Piggy for his therapeutic riding.  He is with 2 of the wonderful volunteers there and learns all about horses and plays games.

Above is hippotherapy.  Notice he is riding backwards and without a saddle.  This really involves the core and forces him to balance.

He is sitting in the other room right now with his braces on.  We are at the 2 hour mark.  He does better when I am not in there.  I think we are on our 3rd Team Umizoomi episode :)

And, can not leave out the girls.  Here is everyone with Grandmom on our Florida trip.
Happy Summer all!  Stay cool!
~Martha

Happy Everything & Daily Bracing

First, I'll start by saying HAPPY EVERYTHING!  That includes mom's birthday, our anniversary, mom and dad's anniversary, father's day, family coming in town...

Love the beach!

This one cracks me up because a wave came and Gracie wouldn't put her feet down.

But, the real reason for this post.  Here is a small glimpse into what we do daily to help get Griff to where he needs to be.

This is the full view.  There are knee immobilizers, heel cord/foot braces, and under it all is the "tickle machine."

These stretch his heel cords to help him stand flat footed.

This is an e-stem machine to stimulate the muscles and help them grow and develop.

We are a little out of routine because of vacation.  But, we're getting back in the flow - I promise Ms. Laura (our wonderful PT.)  Ideally, Griff would sleep through the night with both sets of braces.  But, we can't seem to get him there.  He wakes up crying 2-3 hours after we put them on.  Instead, our goal is to get them on him for at least 4 hours a day with 30 minutes of the tickle machine.  Luckily, "dude" likes tv and that helps him pass the time.

Martha