Jogging Stroller

I am on the hunt for a special needs jogging stroller for Ruby.  Her wheelchair is great, but it limits us as a family. It can't go on grass, up hills, on trails, in the sand...etc. There is no sun shade and it doesn't recline well for naps. Also, it is black so if Ruby is out in the sun in her chair, she bakes.  Last summer, I often left Ruby inside on the video monitor while I was outside with Charlie and Tabatha, just because I didn't have a good place for her to sit outside.

A stroller like this would enable me to have Ruby out in the yard with the other kids and I all summer.  I could push her around the yard, even around to the backyard, which means going down a grass covered hill.  She could doze off in the shade while being outside with us. It would also allow us to go on trails, dirt, sand...etc. I think we would be able to do more as a family if we had a comfortable place for Ruby to join us.

So-- my friends with special needs kiddos---I need your advice/opinions.  Any of you have a special needs jogging stroller? What kind is it? Do you like it? What don't you like? Is it worth the money?

Also-- anyone in the West Michigan area have one that I could try? I would hate to purchase one and then find out it wouldn't work for Ruby. It would be so nice to try something out first.

I would love some help on this! Let me know what you know :) Thanks!

Sweet Sadie

Several months ago, God brought Audrey Beute into my life.  Her and her husband, Nick, adopted a baby girl from Ghana last year.  This sweet girl, Sadie, happens to have a lot of the same struggles as our Ruby and because of this, Audrey and I have become dear friends.

Audrey and Nick need to get a van that will accommodate Sadie's new wheelchair.  These vans are expensive and the Beutes need our help! This family has impacted my life in many ways and I would love to beautiful Sadie riding in her new van soon!

Please check out their blog and help if you can:

http://beutebunch.blogspot.com/

Meds

Ruby has had increased seizure activity the last couple of weeks. I HATE seizures so it is tough to see her go down this road again. Last night she was fidgety and up for hours; finally after she had a seizure she settled down and slept hard. So, because of our rough night, I resorted to calling neurology this morning to see what we should do. They decided to increase her morning seizure meds; we are so hopeful that this will calm things down again. It is possible that as Ruby grows we will have to keep increasing her meds to balance things out.

Two years ago Ruby was fussy, uncomfortable and she didn't sleep well at all. Once we got her seizures under control she became a calm and giggly little girl who sleeps through the night! I do not want to go back down that ugly seizure road again.

Please pray the increase in meds will do the trick!!

I promise Ruby was not hurt in this photo :)

Library Adventure

Snow days used to mean sleeping in. As a teacher, I always looked forward to waking up early, seeing my school on the bottom of the local news and then crawling back into a warm, cozy bed.

Now, snow days mean a schedule change and that is usually not good for my kids or for me.

Today was a snow day (actually a rain day). I don't teach on Mondays, but Ruby and Charlie go to school on Mondays. Having them both home all day really changes things for me; I am fairly stuck with all three kids because I can't push Tabatha in a stroller, Ruby in a wheelchair and keep my eye on Charlie as he runs around all at the same time. I am not a big fan of that "stuck in the house all day" feeling.  Thankfully I had Emily (my babysitter) for part of the day today so for a little while she did therapy on Ruby and I was able to run out with Charlie and Tabatha. Still, getting groceries with two active kids around lunchtime is no easy feat.

On the way home from the grocery store Tabatha feel asleep for ten minutes. She decided that was enough of a nap for her.  She refused to nap the rest of the afternoon. Charlie and Ruby were not interested in napping either, so by 3pm I was ready to pull my hair out.

So, I did what any good Mom would do, I put all the kids in the van and I put in a Curious George movie. (Mom of the Year Award coming my way, I know :)

Since all of the kids were already in the car I thought, maybe I could take them to the library, by myself.  I could carry Tabatha, Charlie would walk (yeah right) beside me and I could push Ruby. She seemed calm so why not give it a try?

The library was packed. I should have returned my books and headed for home. There was no handicapped parking available so I had to pull into a spot, back half way out of the spot, shut off the car, signal traffic behind me to go around, put the ramp down, get Ruby out and park her wheelchair next to the car, put the ramp up, pull forward and then get the other kids out.  I was tired before we go to the sidewalk.  We walked from the back of the parking lot, Charlie running next to us while I was pushing Ruby and holding Tabatha.

So far so good I thought. All was well. We got up the elevator, I pushed Ruby around,  Charlie helped me pick out some movies while Tabatha banged on the computer keyboard (I can't keep her away!).  Charlie even used the public bathroom completely by himself :)

Then, about halfway through our book selection, ten minutes into our library visit, Ruby lost it.  She started tightening up, moaning and crying.  Nothing would quiet her and I had a toddler and preschooler to reign in and a bag full of books to check out.  Everyone was glancing out of the corner of their eyes at us and I was sweating.  We already draw a lot of attention when we are with Ruby and now she was having a fit.

We made a beeline for the self check out. Charlie helped me scan the books while I tried to quiet Ruby down, to no avail.  I grabbed Tabatha and we go out of there as fast as we could. As soon as we got outside, Ruby started smiling. I should have been glad she was fine, but instead I was a little annoyed that she had manipulated the library visit.

I always had these visions of what being a Mom would be like. Running out of the library with a crying kid in a hot pink wheel chair was not what I pictured.

Ruby was probably just hungry and tired. I am sure the new sounds and lights got to her.  I should not have tried to venture out with all three kids. But that is what is frustrating...I can't take all of my kids out by myself. I need help to hang out with all of them together! Even something as tame as the library doesn't go well and I wish it would.

For the most part, our normal feels good and I have peace. We have a routine and it works; I love my family.  Once in awhile, when we are out in public, I see my family through other people's eyes. It is easier to feel sorry for myself then.

I have to remember that strangers don't know my kids, especially my Ruby. They don't know Ruby's snorts or giggles. They have never seen her kick and laugh in the pool. They don't know her tickle spots and they can't understand her tears.

I know her and love her, no matter how she does in the library.  It is okay to feel bummed about our situation once in a while, but I have to remember it is silly to judge my own life when I am looking through other people's glasses.

God- give me feet to walk the path you have laid out for me.

Strength and Contentment

God continues to use ABR to make Ruby stronger.  Check out what she did at school this week on a bike! There is no way she would have done this a year ago, especially not with a smile on her face.  Her core keeps getting stronger and more solid. That head control is even coming! The progress is  slow, but the changes are permanent. We continue to strive to be patient and love her just as she is each day. Progress is more fun to celebrate when I don't have a time line in my head for 

when it should happen.

We love the Ottawa Area Center, where she goes to school. They keep pushing her and challenging her but they also love to cuddle with her :) 

For now, Ruby is cannot move the bike forward on her own, but I hope that eventually she will be peddling this thing around school by herself!  Maybe we could even get one for our driveway someday.

For now I will just enjoy this huge grin and thank God for her new strength and contentment.

Tabatha Marie

A few pictures I wanted to share to document how Tabby is growing; 

she is a few days shy of 18months old.

Tabatha is...

A copy cat (wants to be just like her big brother)

A ham

A climber

A great sister and a climber

Always ready for a party

Did I mention she is a climber?

A goofball who loves books and her Dad 

A rockstar

A big fan of saying "cheese" whenever I get the camera out (all my pictures of her look like this :)

My sweetheart! What a blessing you are Tabatha Marie!

The Perfect Shot

A few weeks before Christmas, my parents asked if they could get a picture of our kids for their Christmas card. We didn't have any recent pictures of all three of them so we decided to try to get a good shot. Well, it didn't go so well. For six straight minutes we attempted to get everyone to look at the camera and smile at the same time....this was impossible.  

Tabatha did a solid job; she stared at the camera and said "cheese" most of the time. Ruby spent a lot of time trying to keep her head up and not get smothered by her siblings. Charlie looked everywhere around the room except at the camera, even when we were jumping up and down to get his attention.  

I am sure it was quite the scene.  

Here are the pictures we got from that photo shoot, along with a little commentary.

They are far from "perfect pictures", but maybe these photos do share a

 perfect representation of our family :)

 Charlie, keep your eyes open. Tabby, over here!!

 Charlie, give me your eyes!

Ruby, don't lick your brother.

Yeah Tabatha! Charlie, smile!

Tabby! Over here!

Ruby! Ruby!

Charlie, we are almost done, keep looking.

Put Ruby's hand down

 Push Ruby's head back

Don't bite Ruby's fingers!

Tabatha, over here!

 Pull your shirt down, Charlie.

 Wait, we aren't done....