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". 

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

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. 

Dr. Nemeh - April 20, 2015

I would say the best words to describe today's visit is

PEACE, JOY, and HOPE

Before our appointment I showed Kevin the picture of our last visit with Dr. Nemeh. When I told Kevin we were going to see Dr. Nemeh today he got a big smile on his face. 

During the visit, Kevin went in and out of Peace and Joy.  If he wasn't quiet and full of Peace, he was full of Joy by smiling, laughing, and babbling a way. If someone was listening in from the outside it would sound like a very FUN doctor visit. 

Dr. Nemeh filled us with Hope by being very pleased with the results of his assessment today compared to last visit. He said blood was flowing and it was apparent by the veins that were clearly visible throughout Kevin's body...which he said was a very good sign. He said that we should expect to see some results regarding the left foot. When we commented how verbal Kevin has been since our last visit in February, he said to expect more. And in case you didn't hear, Kevin's verbal sounds had more purpose to them at times, not just babble. It was apparent he had something he wanted to say instead of just the babble sing song sounds - which we love to hear too. 

We feel so blessed that Friend has given us this opportunity with Dr. Nemeh. Today we got to talk with Mrs. Nemeh while we were waiting. It amazes me that she can remember us from 9 years ago. She showed us a painting that is hanging in the office that Friend painted after his healing with Dr. Nemeh. Friend was finally able to use his hands and fingers and he used them to create something beautiful for Dr. Nemeh. Next time, I'll take a picture of it to share. We return in 8 weeks. 

For medical treatment with Dr. Nemeh go to www.drnemeh.com

For prayer and healing services with Dr. Nemeh go to www.pathtofaith.com

If you are interested in reading more about Dr. Nemeh you can find this book on Amazon.

Miracles Every Day: The Story of One Physician's Inspiring Faith and the Healing Power of Prayer

Miracles Every Day is the story of Dr. Issam Nemeh, a Cleveland-based physician and devout Catholic who has prayed over tens of thousands of people from all faiths and all walks of life in the past two decades. The result? Miracles. Injuries healed, cancers cured, sight and hearing restored. Yet, as Dr. Nemeh will be the first to point out, “the miracles are just to get our attention.” The healings do not originate from him, but from God. It is this humility and dedication to those in need that have won him the respect and trust of laypeople and religious leaders alike. 
     This inspiring chronicle, beautifully told by author Maura Poston Zagrans, traces the lives of the doctor and his dedicated wife, Kathy, and brings us the uplifting stories of the many people who have been healed through one man's powerful faith. Miracles Every Day is a compelling reminder of God's individual and unconditional love for each one of us. Along the way you will meet the dedicated family members, volunteers, and clergy who support the Nemehs in their work. They speak of a ministry of hope, of lives changed and saved through not just the power of prayer, but through the awesome Spirit-driven power of love.

Update on Upcoming Visits

With help from Friend, Kevin has his next appointment with Dr. Nemeh (in Cleveland) on Monday, April 20 - tomorrow! 

In a couple weeks we will be traveling to the Family Hope Center in Philadelphia, but not for our six month revisit. We are going for a quick visit to pick up Kevin’s Mollii Suit. We are giving it once last try. He is going to wear the original suit he wore a year ago, when he initially tried it on and we witnessed results. FHC will help us ensure a good fit which will likely mean something additional to ensure the pads on the inside of the suit are getting contact with his skin. The foot doctor will also see him to check on his left foot. 

Although our 6 month revisit was scheduled about this same time, we have decided we would like to have some time in the Mollii Suit before proceeding with his evaluation and assessment. So we have rescheduled that visit in July. 

After seeing Dr. Nemeh and getting the Mollii Suit back, we are praying and hoping to see some positive progress during the months of May and June, in regards to Kevin’s left foot and walking  - Please pray with us!