Saturday, September 6, 2008

 Uniqueness

Friends, believe me, our dryer is indeed the only thing in this house which can be associated with the word normal. Even this beloved appliance can at times exert what seems to be a mind of it's own.
There are alot of things that make this family unique. Today I want to show you some things in our home which you may not find in the typical house you visit. :) Thanks to our very own little celebrity boy (It began to seem that our K was a bit of a celebrity when my identity changed. At some point, around 5 years ago people began approaching me with "You are K's mom aren't you?!" I love it!) we have some pretty cool fixtures in our home
This is the fancy schmancy chair that Mr. K gets to eat in. He has some tone issues which make it difficult for him to multitask. He has some muscles which have lower than normal tone, and some which are tight with high tone. With these issues it is hard for him to do the work of sitting up straight, keeping his body at the angle it needs to be, and think about all of the muscular tasks that go into feeding himself. This chair does alot of the gross motor work for him. It keeps him very supported from his feet, through out his hips, and up to his shoulders so that he doesn't have to concentrate on those things and can focus on eating. This has been really helpful as we have struggled with eating issues (getting him to eat enough) ever since he was born. Other than the frequent toe stubbing adversary that this chair has often become due to it's large size and no where to conveniently store it, we have really appreciated it. :)
This is K's wheelchair. Even just typing the word brings up an immediate reaction. Wheelchair - *shudder*. :) Once K learned to walk with his walker, and some on his own, I was so encouraged. We got the wheelchair a year ago and I felt like it was a bit of a reversal in progress. It was recommended by his teachers last year, as they were not all that pleased to be carrying him around for those times when the walker was not usable. We actually haven't used it yet, but will likely put it to some use this year as he will be going on a few field trips with his preschool class. For long distances it may be more practical. I'm just not a big fan of it. Maybe I'm being weird about it, but I think I have the right to be weird if I want to. :) It has been fun for the boys to give each other rides in though. This is Jay in the wheelchair. He harbors none of mommy's wheelchair stigma issues. He just thinks it's about the coolest thing ever to enter this house.
These are K's DAFO's, Dynamic Ankle and Foot Orthodics. You can see that the right one is higher than the left. That is due to his right side being more affected by his cerebral palsy than his left. When he was 3 days old he suffered from an interventricular hemorrhage (bleeding on the brain). It was on the left side of his brain, therefore affecting the right side of his body. Some doctors label him as having hemi-cerebral palsy, which means it really only affects half of his body. These braces put his feet in the correct position to walk. He only wears them when he walks. He has so much fun picking out the colors and designs (he is definitely his mommy's boy!) each time we have to get new ones. We are getting new ones quite often these days as he insists on growing. Crazy kid!
This is his G-tube extension, a syringe from the abundant stash that inhabits a drawer in my kitchen, and his high calorie formula. Although he is eating better and better, he still needs a boost in the calories and this helps so much! This gets him 250 calories in 8 ounces. Must be nice to have that problem eh? :) Some days he just refuses to drink, so we have to resort to putting it directly into his tummy via G-tube. That is a God send! It was a difficult surgery for me to agree to, but has been a great decision!
K's walker. I love it! I remember the first time he used one of these. He hadn't been walking at all previous to his try at this. It gave him just the security and support he needed. I think he was around 3 when he was able to do it well. Oh man! We were at a physical therapy session and watching him stand in the walker for the first time and take those first assisted steps was a phenomenal moment for me. I cried (Ooh! Big surprise!)

Pretty cool stuff! :) My little buddy K is one of my heros. His determination is inspirational. I love that kid. I have witnessed so many miracles as his mommy. A couple of weeks ago Sarah@ Life At the Parsonage took this photo, which I just adore! I didn't know this moment had been captured until she e-mailed it to me. This is my K dancing with no assistance at a Kutless concert. :)

I watch you dance and I can't wait to see you fly. You show me often that there is no end to your potential.

You make me rethink what I have set as my own boundaries - the ways I have needlessly limited myself.

There is nothing we can't do with God as our strength.

So dance baby. Dance!

22 comments:

mudpies4all said...

I LOVE this post! Thank you for sharing these very cool things. Isn't it wonderful that we live in a world where such technological and medical marvels abound?! Your family is so beautiful and precious, and who wouldn't love the dancing picture. Thank you for sharing!

Amanda said...

you so made me cry...definitely a blessing to have so many not so "normal" things around your house...the blessing of life and freedom and a sign of all that little k has overcome through the power of God.

Sarah@Life in the Parsonage said...

Thanks so much for sharing his "stuff" :)

He is indeed quite an amazing little guy...I love that pic of you two, the expressions on both of your faces are just magical :)

Anne Elizabeth said...

I LOVED this post! I am so glad that you shared all of this. It helps to give me more of an insight into your alls lives. I LOVE LOVE the picture of K dancing. It brought tears to my eyes!

blessedwith5 said...

My hubs has very bad knees and uses an electric chair to get around in a lot of the time. At first the term "wheelchair" freaked me out, but now I am thankful that technology is great and can help our lives be more productive.

Love the beautiful pictures!

Kathryn said...

Bless his precious heart. I LOVE the last photo! What a wonderful keepsake ... and a wondrous reminder of his joy!

Setala Family said...

What a wonderful post. The picture at the end is truly pricelss. I'm sure it must mean the world to you to have that moment captured on film.

The Bayou Belles and Their Beau said...

What a great post! Thanks for sharing it with us all. I do indeed love that picture of him dancing.

MoziEsmé said...

What a kid! Thanks for the inspiration!

Little Candle said...

What a wonderful post...thank you for sharing...please give K a big hug from all of us...and have him give you one in return. He is so blessed to have you as his Mama.
Hugs!

Sarah :)

Cindy said...

I absolutely love the picture. Though you have the moment in your heart, now you can see it and be reminded of the progress he has made. What a great treasure.
Thank you for sharing the other photos also. When we meet others through 'blogland' we sure have no idea of what their lives are really like. What a glimpse you gave us today.
Blessings, Cindy

blessedwith5 said...

Sibling rivalry can really get me down some days. I know it is a normal part of having five kids, but do really think they could use the energy they waste on having a great time.

Anthony's Mommy said...

I just want to first off say that you are a wonderful mother! I am so glad K has you in his life.

I read your posts and you just seem to really appreciate and enjoy every day you have with your little boys. And that makes me so happy cause a lot of mothers don't seem this way. Maybe its because K was your first? You went to hell and back with him and like me, maybe you really do feel like every day is a blessing because of this event in your life.

It humbles me each day to see the things you have gone through with K. And I think, geez, Anthony's situation was bad, but so many other things could of happened as well. K and J.D were 26 weekers right?

Anthony had a grade 1 brain bleed but we don't see any signs of CP right now. The physical therapist said I can stop worrying about it, but I still do a little. When did you find out?

Anyway, again I'm so glad K has you as his mommy. And I'm so glad you have K! Cause I know he has changed your life, and I think because of him you see what a miracle every little thing is around us every day and appreciate it even more.

Kim

mamachristina said...

The admiration you have for your special guy is so eveident in this post, and the last picture is very sweet and I am so glad your friend was indeed able to capture it for you.

jennifer said...

lovin the picture of the jam fest!

Jackie @ Our Moments Our Memories said...

Oh, he is totally one of my heroes too. What an amazing boy. And yes, you have every right to be "weird" about the wheelchair thing if you want! :)

That picture captures his spirit and your joy so perfectly.

The Bayou Belles and Their Beau said...

Heads up ... i tagged you with a meme. Check it out in the morning.

IA said...

I praise God for the courage He is giving you in raising your extraordinarily special K! God really works His wonders when we let Him, and my heart is so warmed seeing your lil boy so happy!

creative gal said...

I just found your blog. Thank you for sharing your life! You were a blessing to me today!

dani said...

i hope he always feels like dancing, wendi, and i hope you always see the blessing in it... in him.
what a beautiful boy with beautiful parents and not so weird gadgets to help along his way:D
love,
dani

Lindsay said...

This post is AMAZING! Thanks for sharing the blessings in your life!

The dancing picture is PRICELESS!

Hollie said...

Hi! I found your blog through Sarah's. We also have a daughter with mild CP. She is 7 now and doing well. I always love to connect with other mom's of children with special needs.
Your son is adorable. Just wanted to say "hello"