Safety First!...

Today was Gavin's inaugural run with his new wheel chair!  

We strapped him in and hooked his school backpack onto the back of the chair.

I had contacted the bus company over the weekend to tell them that Gavin had new wheels.  I was hoping they would send out their bus safety specialist, Cheryl, to meet the bus.  I have faith in the bus driver and bus aide, but I wanted Cheryl there just in case they had never seen that type of chair.  They were so used to his old chair - and I wanted to make the transition smoother as they figured out his new chair.

I love how safety conscious this bus company is!  And I feel grateful that they didn't think anything of sending Cheryl out to ease my worried mine!  As I watched the three of them surround Gavin to secure his wheelchair and belt him in, I saw a little smile on his face.

I think even he knows that they put his safety first.

Thank you, bus angels!!

Getting Into The Swing of School...

Yesterday we had a surprise visitor while we were waiting for the bus at the end of our driveway.  It was Cheryl, the Safety Coordinator from the bus company!  She came out to meet the bus and make sure that Bruce and Marie were locking Gavin's chair in efficiently.  I was so impressed by that.  Everyone at this bus company has been so sensitive and careful with Gavin.  And they've gone above and beyond to make me feel comfortable.  Cheryl hung out with us for a while as we waited for the bus to come and it was nice to get to know her a little bit.  It's funny how perfect strangers can find something in common with you in a short chat!

We're getting into the flow of our new morning routine.  I thought waking the boys a whole hour earlier (at 7am) would be hard, but turns out it's only hard for me.  *Yawn*  A few times I've had to wake Brian and deal with grumpiness for a little while, but other than that it hasn't been bad.  Sara now comes at 7:15 to help get Gavin fed and ready for the bus by 8:10.  They're still trying to work out the traffic patterns. The majority of the time they don't get to our house until well past 8:30.  As long as it gets worked out before the cold weather, we'll be patient!

Gavin loves the bus, Sara tells me.  She sits right across the aisle from him.  The only part he sometimes doesn't like is when they are strapping him in.  Between the loud clicks and people in his personal space - he often looks a little sad through the window, as you can see.

Once they are on their way, Brian and I jump in the car and I drop him off at school.  The other morning we were greeted by his teacher and a new face.  Brian had a new classmate and he was not at all happy to be there.  Practically hyperventilating!  I knelt down as I held Brian's hand and tried to talk to the poor little guy - telling him Brian would love to show him all the cool toys they had...and how fun the playground is...right, Brian?  Uh huh, he said.  Then I said (foolishly) - "Brian, do you remember your first day?"  Uh huh.  "You were scared on your first day too, right?"  NOPE!  Well, he was right.  Couldn't argue.  I looked at Miss Laura and shrugged my shoulders - I tried!!

Lately Brian has been in major question mode.  He questions everything to the point where I either have to go look things up - or make things up.  Luckily, I'm pretty good at making things up.  Like where the water goes when it goes down the drain.  Then where it goes once it's in the water pipes.  Then where the water pipes go.  Before I know it, I'm at the water treatment plant down the road!  He is so inquisitive.  My sister, who was an excellent homeschooler, gave me a great idea this morning.  She said to not be afraid to call places - like the water treatment plant - and ask for a tour!  It may be a little soon for this, age wise, but I totally plan to do this.  I've already made a list - Water treatment, the police station, fire station, recycling...it could be fun!

Gavin is still loving school.  He has met and had sessions with all of his therapists and I love getting their notes.  I really can't stand not being involved - it's not easy for me.  But I'm sure it will get better as the days and weeks go by.  Today Sara painted a hilarious picture for me about "Shaving Cream Sensory Play."  She told me that at one point Gavin had shaving cream everywhere - it looked like he was about to actually shave!  He had a ball and came home a mess.  I loaded up his iPad with all kinds of photos from home and today Sara added them to his communication app.  They plan to incorporate his iPad into many parts of his day, which excites me.  As much as I love the iPad for that - I still have a reservation with it.  My dream school for Gavin (at least at the moment!) which starts at first grade does not allow any computer equipment or electronic devices.  They use the paper "Pecs" system, if the child needs it.  Gavin isn't able, physically, to use Pecs.  And if I get him used to (and possibly proficient) using the iPad - will I screw him for a future at this school??  These are the decisions that keep me up at night.  But for now, I want him to communicate.  And I'm happy he's at school where there are lots of hands to help hold the iPad for him all day!!

I'm having a mini wheelchair crisis as well.  To get around town, I often put Gavin in our umbrella stroller.  Just a typical stroller.  Problem is - he's way too tall for it now and uses his feet as brakes.  Flinstone style.  Sometimes we use his wheelchair - but there are two problems with that.  It takes up a LOT of room in the trunk...and it's so heavy.  Sometimes it's hard for me when I'm alone to lift it in and out multiple times a day.  So I found an adaptive stroller that I fell in love with.  It's called the Special Tomato Push Chair.  I thought I had a great chance getting it covered by our insurance - but today it was denied.  Bummer.  I will appeal, of course - and probably win - but it takes time.  Everything is a fight.  The other problem is with his current wheelchair.  He is able to slip himself down in it - despite being buckled in very well.  It makes me nervous from a safety standpoint.  So we'll be headed to the wheelchair clinic at the hospital this coming Tuesday to possibly pick out a new wheelchair.  Different than the adaptive stroller - two different types of chairs.  Let's hope a new chair is covered without a hitch!!  

Nothing's easy...but everything's worth it.

Flashing Lights...

I probably shouldn't write this post.  But I'm going to.

I probably shouldn't let certain things upset me.  But I do.

I am sitting here in my kitchen in a very quiet house.  I only hear an occasional sniff which reminds me that I'm crying.  I can't believe I'm crying.

This has been a very taxing week for me.  Physically and emotionally.  New wake up times, new routines, new therapists and new teachers to meet.  Driving much more and lugging things here and there.  Collapsing into bed at night and working through major arthritis stiffness in the morning to get moving more than an hour earlier than usual. Trying to figure out boundaries when before there were none.  Trying to figure out my new place in my son's life during the day when before it was all about us.  Waiting anxiously to pick Gavin and Sara up to hear about their day - and bummed at how much I miss.  Trying hard to make things normal and just as exciting for Brian, too.  Then taking Gavin to the emergency room last night and finding out he broke his finger.  Now waiting to hear back from his regular hospital so he can see his orthopaedic doctor as soon as possible.  The stress never ends.

But the one thing that brought me to my breaking point this morning...that has me in tears...is the school bus.

Let me introduce you to the two wonderful people who keep my precious little boy safe on the bus ride to school.

This is Bruce and Marie.  Do you know that Bruce was once in the Air Force?  And Sara tells me that he is such a safe driver.  His biggest concern is making sure that his 'precious cargo' are happy and safe on the bus.  And then there's Marie, the bus aide that helps get the children buckled in and strapped down.  She's an avid quilter, just like my Mom used to be.

This first week, everyone's trying to get used to everything.  Me, the teachers, Sara, Gavin and, of course, Bruce and Marie.  When they arrive to pick Gavin up, they lower the wheelchair ramp.  Then they lift it up and Marie pulls Gavin's chair back into the bus.  Gavin rides to school in his wheelchair and there's a process to secure it.  Straps that are bolted to the floor need to be attached to all different areas of his chair and then tightened.  Then they need to put belts and straps around him as well.  It absolutely takes some time - and this Mom is glad about that.  Bruce and Marie don't let anything distract them from making sure that both the wheelchair and Gavin don't go anywhere.

I would like to think that I'm a considerate neighbor.  When I noticed that it was a rather long process, I sent out a mass email that reached 93 out of 95 of my neighbors to explain to them that there might be delays on our street at that time in the morning.  Our street is one of the exits out of the neighborhood so I thought if they needed to change their routine they could go out the other exit if they didn't want to wait.  Just to give them a head's up.  And I said in the email that if they did choose to wait, that perhaps they could say a little prayer for Gavin as he begins a new journey away from his family.

This morning we were all outside waiting for the bus to come.  Brian entertained himself by sweeping the driveway.

Finally, the bus came and once they lifted Gavin in and folded up the lift, Brian and I went back inside while they strapped Gavin in.  I had to get Brian ready to drive him to school.  I happened to look out my window and saw a car pull up behind the bus.  After about a minute, a person got out of the car and walked up to the bus - peering in and saying "What's going on?!?".  Then got back in the car only to get out again another minute later to look in the windows of the bus again.  I felt my heart beating out of my chest.  I ran outside and all the way up the driveway and explained what was going on...trying to stay calm while my heart was beating out of my chest and my blood pressure was quickly rising.

Then I put Brian in the car and tried very hard not to cry as I drove him to school.

So, I was thinking about putting a sign on my front lawn.  Maybe "Expect delays - a little boy in a wheelchair needs extra time to get on the bus".  Nah.  Maybe "Patience is a virtue.  Count your blessings."  Nah.  Maybe "Tread lightly on the heart of the Mom who lives here."  

I don't really know what to say, but I'll tell you what my biggest fear is.  That this is just the beginning.  That people will feel inconvenienced by the time it takes my son to do things.  Or worse...that Gavin or Brian will  catch on and it will hurt them in some way.

If you are reading this and you live near me, please...please be patient if you see those flashing red school bus lights.  This child, who we were told may never even sit up, is going to school!  On a bus!  And the Mom inside this house - she's trying so hard to let him go.  Please...please don't make this harder for any of us.

Slipping and Sliding...

Gavin and I were out the door early this morning.  We had an appointment at DuPont Hospital to have his Kid Kart wheelchair adjusted...and to have him evaluated for a new chair.  Ed and I tried to make some adjustments to his current chair on our own, but I feared that we didn't do the best job.  The manual for the chair was written in broken English.  Or something like that.  Gavin would get fussy a lot when he was in the chair - which said to me that my usually agreeable child was uncomfortable.

At the hospital, it took the woman about five minutes to make adjustments.  When she was through it looked like a brand new chair!  She even added extra-extra padding under his seat to cushion his skinny little behind.  We agreed that this chair will continue to serve him for another year or so.  I do love that you can remove the chair from the wheeled base and click it into a "hi-lo" base.  It can be lifted high enough so Gavin can sit at a table...and lowered so low that he is practically sitting on the floor.  I can see him participating in "Circle Time" once he starts school!

While we were waiting, Gavin entertained me with somersault attempts.

After our appointment, we had a lunch date in the hospital cafeteria!  I was beaming when three different people independent of each other stopped by our table to flirt with Gavin!  He was especially giggly and happy during our lunch.

We left the hospital and made a pit stop at a local store.  Gavin is an excellent shopping partner and I knew he'd help me find something we desperately needed...

A SLIP AND SLIDE!!!!

Brian didn't waste ANY time joining his big brother!

It was a fun afternoon.

We came inside for a snack.  Sara and I turned our backs, probably to discuss last night's "The Bachelorette", and turned around to see this...

Happy Fourth of July!

The 'W' Word...

We have had a Kid Kart Adaptive Stroller for a long time.  I remember distinctly the day we went to pick it up at the hospital's seating clinic.  We went as a family - Brian was still an infant!  I definitely wanted Ed's support.  I'm not ashamed to admit that it was a little tough for me to accept that my son was getting the "w" word - a wheelchair...

...which is why I was glad that this was called an "adaptive stroller."  It gave his little body, which at the time had such little tone, a lot of support.  We bought it with two different bases - a stroller base with wheels and a push bar and also a hi-lo base for inside.  The base for inside use has a hydraulic lift that can lift the seat up high or make it flat almost to the floor.

We used it for quite a long time - but then Gavin started to get a little stronger.  I wanted him to have more opportunities to control his own body and not get reliant on adaptive devices holding him up or in or on anything.  It seemed like a bold move - but I think it paid off.  Gavin's trunk control has surpassed what anyone ever thought - and he can sit for short periods in a chair with nothing holding him in or on!!  

Like in this photo:

Or, hello?  Who ever saw THIS coming???

All that to say...it felt weird the other day when I suddenly decided to bring the Kid Kart back up from the basement.  I had to figure out how to make adjustments to it myself so he'd fit in it again, but it wasn't too hard.  I brought it back for a few different reasons.  If I'm honest with myself, Gavin will really need seating like this when he goes to school.  He doesn't have to stay in it - but it will keep him from crawling out of Sara's arms or fighting to sit still during things like "Circle Time" or any other class activity!  And with the hi-lo base, he can sit right on the floor with the other kids without (yuck) being on the floor and possibly laying or...licking...said floor.  Or it can be lifted up to work at table height.  My concern with sending him to school in this has changed because he's now able to go with Miss Sara (best news ever).  She can take him in and out of the restrictive chair throughout the day.  I don't have to worry that he's sitting in it the whole class day.

I also thought it would be good for him to have another play option during the day.  It's easier to get him to focus on a book...or the iPad...when he's sitting still in a seat.  Already he and Sara have sat by the window for bubbles...playing music...and working on his iPad.  Gavin has loved it!  And, finally, it's another way to keep him upright lately.  His allergies are out of control this season.  It sounds like he's snoring all day and night.

Today was the first time he used the Kid Kart in therapy and it worked out great!  We brought him up to the kitchen table and he (and Brian) worked on Miss Janna's puzzles.

Once Sara and I saw how well it fit right under the kitchen table, we both looked at each other with that "are you thinking what I'm thinking?" look.  We may start using this instead of a highchair to feed him at meals!  I'm concerned about it getting messy with food (Gavin isn't the neatest eater at times!) so we'll just have to see how that goes.  The Kid Kart isn't the easiest to clean and I'd hate to wreck it with food, milk, vomit, etc.

Miss Maggie came after Janna for Gavin's speech therapy.  After working on popping bubbles with his lips for a little while, she asked if Sara could take Gavin in the other room to play so we could talk.  She wanted to sit and come up with a game plan for the iPad going forward.  We need to start using it more with him and making it more accessible to him.  Some examples are to have snack choices loaded up and offer him a choice of two each day.  Whatever he presses will be what we give him - even if he presses it by accident.  Hopefully it will make him feel like he's participating in choice-making...and he'll soon get the idea that he has to press what he wants to get it.  She also wants us to start working on "Yes and No" on the iPad.  I'm hoping he understands the concept.

I'm looking to purchase a mount for his iPad that can attach to his KidKart.  If anyone with experience with these has any suggestions or recommendations, I'd appreciate it!

It moved me so much that Maggie wanted to have that meeting.  I know that sounds silly, right?  It's her job - this is true.  But the fact that anyone gives thought outside of work to come up with ideas or suggestions to help my son...it just moves me!  Honestly, all of Gavin's therapists are so invested in him - he is so lucky.  Just yesterday, Miss Stephanie was here for OT.  She heard an idea and immediately thought of Gavin.  Gavin tends to smack or swipe the iPad screen with his whole hand.  She heard the brilliant idea to get finger gloves and cut off the index finger.  This way, the only thing that will make the iPad work is that ONE finger!  Now I'm on a mission to find very small finger gloves for my little guy!!  It's hard to believe that in September we will have had this group of therapists for two years.  It will be very hard to say goodbye to them.

I had big plans for tonight.  Miss Katja asked if I would attend her graduation from college and I was SO touched...and felt very honored knowing she was given limited tickets.  This morning I woke up with a dreadful toothache.  And before the clock hit noon I was scheduled for a same day root canal.  Trust me - I'd rather be ANYWHERE than a root canal.  I feel so sad that I can't be there for Katja.  It inspires me that a young girl can come to America as an Au Pair by herself - knowing only a little English.  A few years later she's not only fluent, but getting A's in college while working!!  I feel proud of her as if she's my daughter.  Congratulations, Katja!!  We love you!!