Sunday, May 10, 2015

A Very Special Mother's Day

It’s been two weeks since my sister and I heard Kevin say “Bye” - it takes a lot of patience to wait for the next time.

I attended a day retreat at my church yesterday. During one of our group discussions I began sharing and ended up crying about something that I didn’t even know was bothering me. I think all special needs moms must have these feelings of being left out of the “normal” on holidays. Mother’s Day isn’t even a big holiday like Christmas. But it is a day that I longed to be a part of for so long as we prayed for a baby. Sometimes I feel left out when I hear about homemade gifts kids give their moms on this special day. I thought I had these feelings under control but I guess they can show up unexpectantly. I know I have plenty to be thankful for and I cherish being Kevin’s mom. I just have to get out of my head of what is normal, because I know normal isn’t always normal, and I can make my own normal. 

So Kevin and I were snuggling in bed this am, my favorite thing to do, and I was thinking this is a great Mother’s Day. I am happy, content, and so loved. After watching Sesame Street and half way through a Thomas the Train show, Kevin started making his way to the side of the bed, making moves that he was done and wanted to leave. And then he started SAYING “BYE”. I halted his verbals somewhat by grabbing my phone to try to record it but I did get one of his “bye” recorded. YEAH!!! I did receive a very special gift today for Mother’s Day and I wanted to share it with all of you. 

I think every mom just wants to feel loved and special on Mother’s Day. And I feel so special right now. Grandee (my mom) said it best, “Bye”, never made me so happy!”

Kevin and I visited Grandma today. When we were leaving, I was trying to get him to say “bye” to Grandma but he didn’t start until after we had left and at the end of the street. But he did say it again, and again, and again!!!

On the way home, we stopped at Trader Joe’s. Kevin gave me another big lasting smile when he saw the man on stilts. Man on stilts instantly became Kevin's new best friend. Kevin was always watching to see where he was in the store. He probably came up to Kevin four different times before we left the store. Another guy working in the produce section witnessed Kevin's initial sighting of the man on stilts, he said he had tears in his eyes watching Kevin. What a blessing! I don't know what I think I'm missing out on, I think some people may be missing out on our "normal". 

Wednesday, May 6, 2015

April 26, 2015 - "Bye"

Jon and I celebrated our 18th wedding anniversary, while Kevin spent the weekend with my family, out of town.
On Sunday I met my sister to pick him up. As my sister was saying goodbye to Kevin - KEVIN SAID "BYE" - the actual word!!!
Best Anniversary Gift EVER!
Note: This happened on our actual Anniversary day, which also just so happens to be on the 26th (my lucky number).

It was nice to hear my family make lots of comments about how many sounds and some new sounds they were hearing from Kevin while he was with them.

While Kevin was enjoying his weekend with family. Jon and I relaxed and had a much deserved lazy weekend watching movies (not animated Disney movies!). We also enjoyed a hike in the Cuyahoga Valley National Park to Blue Hen Falls. I think we all enjoyed a little respite.

Creeping with arm brace, bolster, and strap

Here are some other devices we are using with Kevin while creeping on hands on knees.
The arm brace assists his left arm. He's been using this for over a year.
The bolster and strap around his ankles, keep his knees from knocking together and his feet from splaying out. He's been using this since December.

Kevin is a Trooper!

 A shout out to Grandee for mending the rips in Kevin's knee pads. 
They now fit tighter and don't slip down as much.
So Much Better!

Wearing the Mollii Suit and Walking the Track

Friday, May 1, 2015

It Fits...with a little extra help

Just a quick post to say that we had our very quick trip to Philadelphia. We drove there on Wednesday and drove home the next day on Thursday. And we got what we came for...a Mollii Suit that works and fits...with a little extra help: a 3T long sleeve swim shirt...that is really elbow length on Kevin, over the jacket; sports wrap (in a sharp red color) on his upper arms, ankles, and calves. Oh yeah, and I can't forget the custom made jock strap cut from a pair of batman underwear. But it fits!

In case you don't know the story...we purchased this suit a year ago. When Kevin wore it the first time, the day before his ankle surgery, we saw him straighten his left foot when walking with the suit on - instead of turning it inward. The ankle surgery was not correcting this problem so we were very excited to have something to help. But unfortunately, we have had many difficulties with getting the suit to fit properly and with the control box. Kevin's arms and legs are so skinny that he was not getting proper contact with the 60 pads inside the suit that provide the electric stimulation. The original suit he had a year ago was size CL-140 for the jacket and pants. The suit we ended up fitting him for now is CL-140 for the jacket and CL-134 for the pants. One very helpful aspect of this visit was we were told which pads are activated for Kevin's individual program in the suit. So now we know which pads absolutely need to be touching his skin. Hence, the red sports wrap and custom made underwear. There are very important electrodes on his hip and bum that will not get through a diaper, so we use underwear with a pad and luckily the suit is washable. All parties involved (the company, me, & FHC) are determined to make it work so that Kevin's walking will improve and his left arm too. 

We also saw the foot doctor while we were there, to have a check on his left foot. He basically wants to wait and see if the suit will help before making any other decisions, but he did say the flexibility looked good...which surprised me. Maybe credit for that is due to Dr. Nemeh and using the infrared light. Dr. Joe also helped us pick out a shoe size for Kevin. We came prepared with two shoe sizes for each foot (equalling 4 boxes of shoes) and were happily surprised to find that one size fits both feet with his orthotic inserts. WhooHoo only one pair of shoes...and we get to return the other 3 pairs. 

Despite this being a quick trip to Philly it was not without a little drama. Jon wasn't feeling well the entire trip. Once we arrived at the hotel, I took Kevin outside for a stroller ride to stretch my body out after the 7 hour drive. Philadelphia is ahead of NEOhio and in full blown pollen season. Kevin was miserable afterwards. The next day while we were at FHC, getting the suit to fit, we took a video of Kevin walking before the suit was turned on and then afterwards. But after the suit was turned on, I ended up giving him another dose of allergy medicine and it made him drowsy - so his walking looked worse afterwards. So we will have to wait and see what the results look like at home. But we do know that the suit fits properly where it needs to and that the control box is working. He will wear it for an hour every other day while walking the custom made wooden walking track to keep his left foot on the straight and narrow. Speaking of the walking track, looks like I'll have to put it back inside before the pollen comes out at our house. Before we left FHC, Matthew even gave Kevin an allergy clearing for the pollen and other spring seasonal allergies. We will take video every couple weeks to keep a vigilant eye on his progress. We return to FHC in July. 

If you have found this post and would like to read more about the suit, type in Mollii Suit in the white search box in the upper left corner of this blog. I gave much more information about the suit and it's function and how to contact the company in previous posts.