Saturday, June 22, 2013

My heart is overflowing.


No other words can express what I felt after I saw how caring Kenna is to her brother. 

Thursday, June 13, 2013

Farewell cast

Tyler's thumb surgery was 5 weeks ago. Today was the big day to remove his cast and for us to get a first glance at his thumb. He was born with clasped thumbs (where the thumb stays in the palm of the hand). So we have never really seen his thumb out. He has never been able to grab things with ease or even give a thumbs up. He only had surgery on his left thumb. We will see how this one goes and then decide if it's worth doing the other. 

Tyler was definitely ready to part with his cast. And man, did he put that cast through the ringer. It was only a soft cast so it was getting very dirty and started to unravel in a few places. I really didn't think it would make it to the 5 week mark. But it did. 

He was a trooper when they removed the cast. Since it was a soft cast, they just snipped it off with scissors and then they removed the 2 pins that were in his thumb. I squirmed and made more of a big deal when he removed the pins than Tyler did. He didn't even flinch. 

The pins. 

We have grown accustomed to his thumbs being inside his palm his entire life that it's crazy to see his thumbs out. He now has a splint that he will have to wear most of the day and night for 2 weeks.

A much cleaner view.

His new splint. 

Wednesday, June 12, 2013

Accessible Bathroom

3 years ago when we were searching for a new home, everything we looked at just didn't seem to meet all the needs we were wanting. The main thing was to find an accessible home. Since we couldn't find the perfect home to buy, the decision was made that we would build. We found the perfect lot. We had house plans drawn up. We hired a contractor. We began the process of building. We decided it was also a good time to add another family member (not sure why we thought that was a good idea, but we managed and it all worked out perfect). We moved.

There were a couple things that we did not finish before moving in though. One of those things was finishing Tyler's accessible bathroom. A year and half has gone by since we moved in, but the time finally came. Tyler was going to get his own adaptable/accessible bathroom. Some of the key features of his bathroom are a roll-in shower, lower sink, grab bars, etc. He is one lucky guy, because I'd have to say his bathroom is much nicer than anything in our entire house. But now with these features we will be able to take care of Tyler with a little bit more ease. 

Tuesday, May 14, 2013

Adducted thumbs

Tyler was born with adducted thumbs, which means his thumbs are clasped inside of his palm and the thumbs do not extend out. This is one of the symptoms of his genetic diagnosis of L1 Syndrome.

Due to his thumbs being adducted, it causes issues with him performing simple tasks, such as, grabbing and holding onto things, feeding himself, and even when he uses his hands to prop sit. Tyler is able to bring his thumbs out a little and grab small objects, so his hands are not completely useless. He is still able to maneuver his wheelchair, grab a spoon, grab small toys, etc. But just think of what he could do if he had full function of his thumbs. He would be able to use a pincer grasp, he could possibly feed himself a cookie without him crumbling it inside of his hand. The possibilities are endless.

So this past Friday, Tyler had reconstructive surgery on his left thumb. We thought it would be best to do one hand at a time, so he wouldn't be completely out of commission for the 5 weeks he would be in a cast. The doctor planned to do a tendon transfer, web deepening and place a pin to hold the thumb out. The pins would be removed after 5 weeks. 

The surgery was successful and the doctor was able to get his thumb out. But he was not able to find a good enough tendon to transfer to his thumb. We were sort of afraid of that. Since they were not able to do the tendon transfer, one of the joints in his thumb will be more stiff and will not have full range of motion. He should still be able to have the pincer grasp and the thumb will still be out. Even though we didn't get the best case scenario, it was still successful and Tyler should be able to have better use of his thumb, which was the reason for doing the surgery. The true test will be in 5 weeks and the weeks to follow once the cast is removed and he starts using it. 

Before surgery.

Getting snuggles before surgery. 

After surgery.

He was pretty mad about having another cast. But at least this one isn't as bad as to when he had his hip surgery.

His doctor also has a blog. He writes about different cases he has done and actually posted about Tyler about a month ago. Click on the link below to read more of the medical terms of his condition.

Monday, April 29, 2013

I'm still here

It may look like I have abandoned my blog but I'm still here. I have good intentions to update when things happen but then life catches up with me and then the moment passes by. And then it seems it is to late to create a blog post. I thought about back tracking and catching everyone back up but Holy Moly!! It's been since November. So here is a quick recap of some of the highlights:

  • Travis and I attended the Chiefs/Broncos Game. Unfortunately, the Chiefs lost but we had awesome seats. 
  • Kenna participated in an Elf Race. Kenna's idea of participating was by NOT crossing the start line.
  • Celebrated Christmas 
  • Tyler received an Adaptive Bike by generous donations. I still plan to write a separate post regarding this because it's so awesome. We are so thankful for all of our wonderful friends and overwhelmed by the love and support from everyone..
  • Went snow sledding. Tyler loved it. Kenna did not!
  • It's been over year since Tyler received his wheelchair and he is doing much better getting around in it. 
  • Kenna took her first steps at 13 months. 
  • We brought in the New Year by everyone staying awake until midnight.
  • Tyler has continued to make progress in therapy. He is walking at least 50 feet in a gait trainer with minimal assistance. 
  • Easter tradition of dying eggs
  • Completed my first sewing project, Kenna's Easter dress
  • Travis and I ran in our first 5K along with my sister and friend Michelle. Travis finished 3rd overall and 1st in his age group.
  • We are planning another surgery for Tyler. Surgery is scheduled for May 10. Tyler was born with adducted thumbs (which means his thumbs are collapsed inside of his palm). He will be having a tendon transfer and pin placed in his thumb and casted for 6 weeks. We hope with this surgery it will give him better use of his hands.

Wednesday, November 28, 2012

All I Want For Christmas is.....

my 2 front teeth!

Sunday, November 04, 2012

Friday, November 02, 2012

The BIG 1

I still remember the day when we first met like it was yesterday. Even though it seems like you have always been a part of our lives. You have brought so much joy to our home. I love hearing you laugh and your sweet babble. There's just something about a baby's voice that melts your heart.

You are such a happy and content baby. Although you are not so much a baby anymore and are growing into an independent little toddler. You love to be as independent as can be. Feeding time takes a bit more thought since you don't like us feeding you with a spoon and you prefer to do it yourself and that usually leads to finding finger food type items. 

There was so much that you have accomplished in this first year and I can't wait to see what else will achieve in the years to come.

Wednesday, October 31, 2012

Happy Halloween

Ever since we transformed Tyler's chair into a Viking boat two years ago for Halloween. Everyone has been asking what he was going to be. We took a year off from the more creative side (since last year I was 8 months pregnant and we had just moved 2 weeks prior). So this year we thought we would give it another go. So we created a bulldozer for his chair and since I wanted the kids to correspond with one another Kenna was the traffic controller. I know it's not very girly but we might as well get our say in for Tyler until she wants to be a princess every year, lol. 

The construction worker and the traffic controller.

Sunday, October 28, 2012

Pumpkin Carving

 I wasn't sure how pumpkin carving would go this year with a baby and a kid with sensory issues. We didn't even attempt to make Tyler help gut the pumpkins. If he hasn't liked it after 7 years, we figured he wasn't going to change his mind this year. He has never liked the the issue of touching the slimy guts of a pumpkin.So he just enjoyed watching.

On the other hand, this was Kenna's first time and I wanted her to experience it and see what her thoughts were and see her reaction. I figured she would try to eat the pumpkin and I was right. We put it on her tray and she tried putting it in her mouth right away. This kid puts EVERYTHING in her mouth so that didn't surprise me. She then started to pick up the slimy guts and look at it and then look at me with a perplexed look. It always makes me wonder what is going through their little minds. After further investigating she decided she no longer wanted the unknown substance on her tray and began throwing it to the side and off of her tray.

 Eating the pumpkin

Her reaction when I told her not to eat it.

Throwing it off her tray