Rewind Time to July

I feel like July was just a few weeks ago....yet it's already mid-September!!  I've actually already posted about 3 of the main events from July - our family trip to Indiana, Drew and my 10-year anniversary to the Dominican Republic, and Grant's 4th birthday.  So you'll get a little break from all the LONG posts lately with just a few more pictures from the month of July.

Hannah's PT (Faye) invited us to an Ambucs event.  According to their website, Ambucs is a non-profit service organization consisting of a diverse group of men and women who are dedicated to creating mobility and independence for people with disabilities.  Basically they bring in a bunch of Amtryke bikes for the children to try and to also adapt and adjust to each child's specific needs.  You then get placed on a national wishlist.  I don't quite understand all the details, but I believe we can get one of these bikes for free once our name reaches the top of the wishlist; however, Faye is trying to organize a local Ambucs chapter where big local businesses donate time and money to getting these bikes for children in our country, which would mean Hannah would get a bike a lot sooner.  I believe we also can just purchase a bike if we didn't want to wait as long, but for now we're going to wait.  So here are some pictures from Hannah's bike "fitting."

Hannah getting fitted (Hannah's PT is in the red shirt)

Trying it out

She has a hard time holding on with her right hand because her right side is more affected than her left.

All smiles!

She loved it!  I'm hoping we'll be able to get one by the Spring, so she can "ride" her bike outside with the other kids.

We love going to La Comedia Dinner Theater each year with the kids.  Last year we saw Peter Pan, and this year it was Mary Poppins. As usual, we had a great time and the kids LOVED it, especially when Mary Poppins "flew" over their heads!

Of course we had to get a little milkshake during intermission.

A picture with Mary Poppins and Bert

Random July:

Grant got to ride the penny horse while on a quick grocery shopping date with Mom

Our first cucumber of the summer!

I had to include this because I thought it was sooo funny!!  Poor thing was trying to get comfortable enough to nap in the car. 

Hannah's first dentist appointment - all was good!  (Aunt Mary and Brian (Rudy) - I just noticed both your football teams are being represented in the background!)

Who doesn't love Froot Loops?!

Maw-Maws first selfie with Hannah.

Reading before bedtime

Jenna and I working on the paper mache pinatas for Grant's birthday party.

Sleeping beauty

The cousins love rolling down Grandpa and Grandma Shafers "hill" in their side yard!

Hannah's New Equipment

As I've mentioned in previous posts, right now our difficulties concerning Hannah pertain to grocery shopping and eating out.  She's not sitting on her own and we don't have anything to help her positionally.  However, a product was brought to my attention that was made for those very reasons - apparently we're not the only parents out there struggling with appropriate seating options for their special needs children.

It's called the GoTo Seat.  It's light weight, but sturdy.  It has a five-point harness and a high back to provide the right support.  When I found it online, Drew and I hemmed and hawed over whether we should get it for her - would it really help, how long will she need that kind of support (before she's hopefully sitting on her own), and is it worth the cost since insurance would not help?  But as we discussed it we realized we can only live in the present - we don't know what the future holds, so to hold off getting something for her that would benefit both her and us because of the uncertainty of how long she could use it, just doesn't make sense.  We decided, if it's something she can use, then we need to try to get it for her.  Boy am I so glad we did!!  It has been even better than I thought!  It works wonderfully for her and has solved those main problems.

She can now join us at the table when we go out to eat.  No more sitting in our laps while we're trying to feed her and ourselves or sitting off to the side in the humungous stroller.  I love it!

No slumping or slouching anymore!!

Grocery shopping is a breeze!  No more propping or squishing things around her.  :)

We also found another way to use the GoTo Seat - in the bike trailer when we go on bike rides.  Before she was slumped to the side, but now she can sit up comfortably and see what's going on around her.

Another piece of equipment we recently got for Hannah is a manual wheelchair.  Hannah's therapist brought it from Riverside for us to borrow for the time being.  It has been perfect!  It has a long handle behind her that we use to push her around.  The chair didn't have any straps in it when we got it, so we stuck the GoTo Seat in it and it fit perfectly as well!  Now she has straps and the right back support.  The kids love taking her for walks around the loop in our neighborhood cul-de-sac and I love seeing her being able to be outside, interacting with her siblings and experiencing things an 18-month old should be experiencing.  

The last piece of equipment we received was a gift from Drew's family - his mom, James, his brother Brian, Brian's wife Natalie, and his sister Cathy. It's called the Upsee and it just came out this past April.  A mother in Ireland created it to provide mobility for her immobile child.  The idea is that you can give your child the independence to experience standing, walking, and kicking a ball.  We had been wanting to get one for Hannah, but it's yet another piece of equipment that insurance won't cover, so we just weren't sure we could get it at the moment.  Then one day, Brian emailed us to say that the family discussed it and wanted to get it for Hannah.  I don't think I was able to wipe the smile off my face for quite a few days afterward.  The Upsee brings Hannah so much joy!  She absolutely loves being upright and walking.  Whenever I ask if she wants to walk, her whole face lights up and she giggles and laughs in excitement.  Hannah's PT also thinks it's great for therapy for her.  It requires her to move her legs and provides her the experience of walking.  I try to use it at least every other day (if not more).  She loves it and is becoming more interested in things around her.  We always have to stop and look/touch the front door as well as plants along our walk.  If we're near outdoor toys, she likes being upright and having her hands free to be able to play with them - like the push mower.

The Upsee is actually very simple to use.  It comes with a harness for the child to wear that then clips into a waist belt for the parent.  Then there are shoe plates that connect the adult and child's feet, so when the adult lifts her foot, the child's foot also lifts.

Our first time trying out the Upsee!  It's actually very comfortable for me to wear and seems to be quite comfortable for Hannah too.

It was bright out, hence the shut eyes.  :)

Doesn't she look great in it?!  :)  We never get to see her upright, so it was amazing to see how tall she actually is.

All-in-all we're very excited about Hannah's new equipment that has really benefited both her as well as us.  We're now working on getting her a powered wheelchair.  Hannah's PT is a wonderful teacher, but also still a "student" because she never stops learning.  She's constantly attending conferences, teaching workshops, staying up on the latest research and learning how best to help children. 

So she has said that research has proven that it's very beneficial if you provide independent mobility to an immobile child (who should be mobile).  If they're able to move themselves around and explore the world around them (like any normal toddler would do), then it creates the drive to WANT to be mobile.  Plus it also provides them the sensory experiences that they're missing out on.  So we're working on getting the wheelchair for her, but it's proving to be quite the battle with insurance and others.  We're now learning what it means to be advocates for Hannah!

Rewind Time to June

Looking back at pictures, I realize June was also a busy month for us.  Drew built a box stander for Hannah, B visited, Hannah had her first haircut, Jenna had Safe-T-Town class, we visited Wegerzyn Gardens, and Hannah trialed a powered wheelchair...as well as a bunch of random pictures from the month.  Be warned...this is a LONG post!!

Hannah's Box Stander:
Hannah's physical therapist really wanted Hannah to be in a box stander to help her gain control and increase strength in her torso.  You can't exactly just buy a box stander like you can other medical equipment, but she said it's something that Drew could make.  So she brought over a box stander that another family had built years before (that was currently being used by another little boy with CP) so we could see how it's built and write down dimensions.  Over the next few weeks, Drew worked hard to build Hannah her own box stander.  I'm definitely thankful for a handy husband!!  So we finally got Hannah in it and she LOVED it!  She typically spends at least an hour a day in it, some days being more.  She really enjoys it and has gotten very good at pushing her toys off the tray, so now the therapists and I are working on ways to attach them to her tray, but still allowing her to manipulate them. 

Front view - she's all smiles!

Side view

View from the rear

View looking down - there's foam padding all around her to keep her from falling down inside.

View from the rear with the door open.  I found a good use for all my college textbooks that have just been sitting in a box!

Hannah's PT wrote out just some of the benefits from Hannah being in the stander.  I'd say it's worth it!  :)

 B's Visit:
B came to visit mid-June and as usual, we ALL loved having her here!!  The kids always have a blast with B and soak up every second with her.  And of course, she's grandma and enjoys showering them with some gifties when she visits.  :)  Plus she does a wonderful job of watching the kids so we're able to get things done and also go on a date.  So very thoughtful and VERY MUCH appreciated! 

Hannah's new swimsuit and hat from B.  Jenna and Grant also got new swimsuits from B as well!

B also brings things to do with the kids.  This time she brought bubbles and had the great idea of having the kids use little water guns to try and "shoot" the bubbles.  They LOVED it!  (Grant's wearing a new shirt and swim trunks from B)

They also love having B read stories to them.  Here they're congregated in Jenna's room enjoying storytime.  Jenna's also wearing her new swimsuit from B.

Hannah's 1st Haircut:
Although Hannah's hair wasn't particularly long, it needed to be "cleaned up".  She had quite a few of the baby whispy's going on and just needed a clean cut.  She did a great job getting her haircut and sat very well from the lady.  As usual, she was all smiles!

Before

In the chair, ready to go

Mid-cut

The final product.  Much better!

Safe-T-Town:
Every summer, the city holds a one week two hours a day "day camp" for 4 and 5-year olds to teach them about gun safety, street safety, stranger danger, fire safety, train safety, and other safety issues.  It's free to the community and I think a great program!  This was Jenna's last year,  next year Grant will get to go, which I think he's excited about.  On the last day, they have a program where the kids show off some of the things they learned and sing a traffic light song. Then they get a certificate of completion. 

Grant sitting patiently during the program.  If I remember right, I believe he asked me to take a picture of him.  :)  Love his smile!

Jenna with the officer in charge

They have a neighborhood set up in the cafeteria of the Jr. High complete with mini houses, streets, crosswalks, stop signs, and a stoplight.  At the end of the week, the kids get to put their hand prints on one of the houses.

Wegerzyn Gardens:
Not too far from us is a beautiful garden that has a children's play area (and it's free!).  During the summer months, they have a little waterfall with a stream the kids can play in.  It's a wonderful play area that we enjoy going to each year.  This year we got to introduce my sister's boys to it.  They loved playing in the waterfall and, of course, all the cousins had a blast together.  Even Hannah got in on the water action!

All the cousins (minus Hannah)

Hannah cooling off in the stream

Aiden and Bentley loved the waterfall and the turtle sculpture that "spit" water. 

Yes, Grant indeed found a worm.  I'm actually surprised it's still in one piece.

Hannah loves splashing in the water.

Sisters!

Hannah's Powered Wheelchair Evaluation:
Hannah's physical therapist (Faye) told us of her desire to get Hannah in a powered wheelchair.  At first, it surprised us because when you think of putting someone in a wheelchair, you don't really think of taking them out.  Almost like if they need a wheelchair, they'll always need a wheelchair.  However, Faye has done much research and gone to many seminars about the benefits of putting immobile children (who should be mobile) in powered wheelchairs.  She said if you're able to give them the ability to be independently mobile, you increase their desire to want to be mobile.  Otherwise, many times, they can become quite dependent as opposed to independent.  So her goal in putting Hannah in a powered wheelchair would be to give her the independent mobility, so she can move herself from one place to another - so she can interact with her peers and chase her siblings around, and EXPERIENCE what it's like to be mobile.  Then when we take her out of the wheelchair, she desires that mobility.  So the goal is ultimately to put her in a wheelchair to get her out of a wheelchair. 

So we started the process.  They brought a vendor in so Hannah could trial the chair.  To be honest, I did not expect much from Hannah.  I didn't think she would be able to move it or if she did, that it would be by complete accident.  When they first put her in it, she moved the chair some, but not much.  She was curious about all the parts, but not really using the joystick to move the chair.  Someone mentioned the fact that the joystick is black, and how Hannah has visual impairments and might be having trouble really seeing it, so the rep brought out a yellow ball to put over the handle.  Immediately Hannah reached for the ball and started moving the chair. 

She moved it forward some, but then kept moving backwards.  I just figured it was easier for her to put her hand on the ball and pull, thus moving her backwards.  But then the wheelchair rep mentioned that she might be purposefully going backwards - like she likes it.  So he switched the controls, so now when she pushed it forward it would go backward (instead of forward), and vice versa.  Hannah immediately pulled the ball back toward her (expecting to go backward), but went forward instead.  She stopped.  She did it again, went forward, and stopped.  Then she pushed the ball forward and started going backwards...and kept going backwards....and backwards.  She obviously wanted to go backwards and figured out how to get herself in that direction.  It was so amazing to Drew and myself!!  I couldn't believe she actually understood what was going on and figured out how to change it.  And it was neat to see that she was purposefully moving the wheelchair and not just accidentally "bumping" the joystick.

So, all in all, it was a GREAT experience.  It made us excited to get her in a wheelchair and offer her that independent mobility!  This was back in June...and we've officially experienced the aggravation of dealing with insurance and all the nitty gritty details you have to follow.  Ugh!  There's so much to learn and we're definitely getting a good taste of what it means to be strong advocates for Hannah.  So, needless to say, we're in limbo right now.  Waiting to get a doctor to "okay" a powered wheelchair for Hannah so that insurance will cover some of it.  We'll keep you updated as we progress!

We had a whole team of people with us - the guy in black is Derek, the wheelchair rep.  The lady next to him is Faye Hannah's PT.  Then the other lady next to the wheelchair with green pants and a black shirt is Penny, Hannah's OT.  Also another guy was there too (Rick) who helped us pick out which wheelchair would be best for Hannah.  He's also the one mainly dealing with insurance for us.  We've got a great team for Hannah!

Random June:

Grant learned to ride a bike without training wheels...at the age of 3 (almost 4)!!!

One Saturday morning I pulled the tarp out, put the sprinkler on it and lathered the slide with dish soap.  So much fun!!

The soapy results

Jenna's natural curls...so beautiful.

She loves her raspberries!

Another try at the grocery cart - I used the Boppy pillow to smoosh around her and secure her in place.  It was the best solution for the grocery store, except for the fact that she still didn't have the right support for her upper back, neck, and head.  But for now, it worked well enough (as long as the grocery trip wasn't too long!)

Jenna made p'nut butter and jelly sandwiches for everyone at lunch one day without me even asking.  When did she grow up?!

She was sniffing the flowers and accidentally got the pollen all over her face...and didn't even know it until I took the picture and showed it to her.

Snuggles with my puppy and big girl...and of course there's a book involved. Jenna sure loves her books!

You've got to have a Sno-cone in the summer, right?!  I think Jenna's was called "Skittles" and Grant's was "Superman".  Yum!

My corn husking helpers

My mom, sister, and I had a "girls weekend" and spent Friday night through Saturday night down in Cincinnati.  We stayed in a hotel, did some shopping, got pedicures, and had lots of laughs.  It was such a great, relaxing time away and a wonderful Mother's Day present from Drew and Brian (Kelley's husband). 

Apparently Drew took the kids to the park while I was away because this never would have happened if Mommy was around!  :)  Oh the fun of Daddy's!!

Jenna and Hannah in the bath together with a little story.

I made this chalk art and had the kids wear their sunglasses and act like they were "jumping".  I saw the idea on Pinterest and thought it looked like a great Father's Day gift.  Let me just say, it was quite challenging to do on my own, Hannah wasn't very happy about laying on the hard cement, and after I took the pictures I realized you can't even see the "Happy Father's Day" wording in the circle.  Then I ran out of time and never got the picture printed to give to Drew.  Oh well, I guess he'll finally see it now!  :)

I'm not sure which is more impressive - the fact that Bailey's actually laying next to Jenna, or that Jenna is letting him. 

Hannah swinging!

He is such a goof ball and loves to make people laugh.  He did this completely on his own.

Another sweet picture of Hannah in her stander

The kids had their own "sleep over" in the basement.