All I Want For Christmas is.....

my 2 front teeth!

A Year In Review

The BIG 1

HAPPY BIRTHDAY KENNA

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.

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.

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

 

Rolling Along

Back in July, I posted that we were in the process of finding a wheelchair for Tyler. We had decided that the Quickie Zippie was the perfect fit for him and were patiently and ANXIOUSLY waiting for it to come in. We were told that it would take approximately 4 weeks. Well 4 weeks went by and we were still waiting. It was almost 8 weeks before we received it because insurances were going back and forth on who was going to pay for it. I guess I shouldn't complain since it was nothing out of our pocket and the entire time we still had the demo chair that they were graciously letting us borrow. Let's just say that we put that demo chair through the ringer. It was banged into walls, it went camping and fishing with us and it was thrown up in. We had some major cleaning before returning it.

Tyler's new chair is awesome! It offers all the support he needs, the wheels are in a reverse configuration so they are easily accessible for him and it even has his name on it. But my favorite is the color. It's toxic green!!

 

There were a few minor things different from his new chair and the demo that Tyler had to adjust too, but he is operating it like a champ. There are times that he still runs into the wall but overall he continues to get better at maneuvering it every day. He also started taking it to school and is getting around the classroom and through the hallways. His teacher said the first day when they were going down the hallway, Tyler was going really slow and looking at everything (pictures) on the walls. So the next day they let him go roam the halls to explore and give him more practice.

I love all the independence this is giving him. He is one determined little guy when he knows where he wants to go. Especially when you open the door to go outside, he will get there in seconds; but if you tell him to go to the table because it's time to eat he diddle dallies around. So our goal now is to follow directions. We shall see how that goes. I sometimes have to realize that most typical 7 years have problems following directions and don't won't to listen to their parents, LOL.

Kenna - 11 months old

Dear Kenna,

Wow, 11 months already. Seriously, where has the time gone. It's crazy how time goes by. I can't even think back to the time where we were just a family of three, but yet it has only been a short 11 months since then.

You are becoming one independent little girl. You like to hold your own bottle and if we try to help, you throw a fit. This goes for solid foods as well. You think you are such a big girl and can eat with a spoon all by yourself. I'm sure it won't be long before you can do it yourself; but the OCD mom in me wants to say "let mommy just do it, let's not make a mess". Oh how I am learning that kids make messes. 

 You love pulling objects out of containers and that goes for my tupperware drawer too, LOL!

You love watching your brother and following him around in his new wheelchair. Luckily, there has only been a couple of mishap run-overs so far; but I'm sure there will be more to come. I think you like to taunt him because you sit directly in front of him and look up at him and smile/laugh. I guess you will learn that your brother may not have patience for that all the time. For the most part, he has been very nice to you and waits until you move.

Another development you have learned this month is walking. You are not taking independent steps yet, but you walk pretty well with your push-behind walker.

 My oh my, Mr. Bear sure is looking small.

2012 St. Louis Hydro Walk

We attended the annual Hydrocephalus Walk in St. Louis again this year. This is the 4th year that we have participated. I remember the first year we went we didn't know anyone and now this year we met another wonderful family and met up with some old ones.

Tyler's Troops

Everyone gathering for the walk to begin.

 

All those affected with hydrocephalus.

Another hydro family we met up with, Katy & Eli.

 Thank you to everyone who came to walk with us and to everyone that donated.

Kenna - 10 months old

Dear Kenna,

It seems this past month has been a month of a lot of changes.You continue to grow and learn new things.You no longer crawl by dong 'The Worm', you have figured out that you can get there much quicker by doing the standard crawl. You have also mastered pulling yourself to your feet and love to climb on everything.

I love how you explore. You will be in the living room playing with your toys and then decide to wonder off into the kitchen, the bedroom or the playroom. You love to follow your brother around when he is in his wheelchair. That is until he decides to run into you.

During your exploring, you tend to get yourself into some tight spaces. For instance, instead of taking the easy way around the couch you think it's a better idea to squeeze yourself through the end table.

Birthday Party

We celebrated Tyler's birthday this past weekend with family and friends. Tyler loves to fish (really he loves any activity outside) so we decided to have a fishing theme.
 

Everyone enjoyed fishing and a few fish were caught by some.

 

Summer birthdays are always fun to plan because there are so many options, but you also have to worry about the heat. So what better way to solve that problem than with a slip 'n slide. It was a big hit and the kids had no fear. I think most adults were cringing as each kid was sliding down. And several 'ouch' comments were overheard as they hit the ground. Oh to be young again. We had to 'redneck' it a little and add some additional tarps to make it longer but it worked out well.

Tyler even tried it. He wasn't too sure about it though.

Kenna - 9 month old

Dear Kenna,

9 months already and growing like a weed.

 

Developmentally you have changed so much in this last month. One milestone you have accomplished is crawling. There are so many different methods that babies learn to crawl. Some of them learn how to army crawl, some do the butt scoot, some do the worm, and some learn the standard crawl. The method that you learned was The Worm. If you are not familiar with The Worm, here take a look.

Another milestone is pulling yourself up to your knees. You have even pulled yourself up to a standing position a few times. It just seems so fast on how quickly you have achieved these milestones. And to think that walking is right around the corner blows my mind.

You have been very vocal this past month as well and have been babbling nonstop. I got to hear the most beautiful sound every mother wants to hear, you finally made the "mama" sound. I know you didn't say it in context but it's still a wonderful sound. Your favorite sound to make is a clicking sound with your tongue. There have been several mornings when you wake up and I hear you 'clicking' over the monitor. It's really cute and I appreciate that you wake up so content in the morning and you enjoy playing in your crib so it gives me a few extra moments to get ready for work.

Since you have become more mobile, you make it very difficult to get posed pictures and getting your monthly photo with Mr. Bear. You also think it's funny when you pull your bow out of your hair. I had over a hundred pictures taken with you and Mr. Bear and only came out with a handful of good ones. I guess that's why we leave those good photo shoots to the professionals.

 

Happy Birthday!!!

I can't believe that Tyler is 7 years old already. Where has the time gone? I feel like I have been saying that a lot lately, between Tyler and Kenna. I just want them to stay my babies forever. I am so proud of Tyler and how far he has come and I can't wait to see what this next year has in store for us.

 

HAPPY 7th BIRTHDAY!!

Road to Independence

About a month ago, we started looking at and researching different types of wheelchairs. We tried a manual chair and a power chair. There were many pros and cons to each of them, but it didn't take long for us to decide that a manual chair was definitely the way to go. Tyler seemed to enjoy the power chair but didn't have the concept of when he needed to stop before running into something. He even pinned me in between him and the car once.

So then came the decision of which manual chair. We have demo'd the Quickie Zippie GS and really like it and have finally decided this is the one. We have gone through the list of features and decided on every detail we want his chair to have from the type of seat to the size of wheels to the color. Now the process of ordering it and submitting it through insurance begins, which will take at least 3 weeks. Luckily we will have the demo until then.

Tyler caught on pretty quick and I am so proud of him. He simply amazes me and he has taught me to never underestimate him. This chair is going to open up so many possibilities for him and he is going to do amazing things.

Surgery, Recovery & Meeting another Hydro Family

Tyler had surgery last Friday to remove the plates from his hips that were placed in October 2010. They were long overdue to come out. This type of surgery is typically outpatient, but since we have a 2-hour drive home, the doctor warned us that she may keep him overnight. We went up the day before for a doctor appointment and to get one last x-ray before surgery. The appointment checked out well and we were scheduled to be at the hospital the next morning bright and early (6:15am). So we stayed at a nearby hotel.

The evening before surgery we met up with a local family, who also has a son with L1 Syndrome (x-linked hydrocephalus). We met Sandy & Tom and their 2 kids (Connor and Noah). Noah is 2 years old and has the same diagnosis as Tyler.. We met them briefly last year at the Hydrocephalus Walk in St. Louis, but it was so good to meet up again and talk. Noah is so precious and was always smiling. I loved listening to his sweet little laugh. And of course, did I remember to take a picture? No!

Friday morning came and we were off to the hospital. This was Tyler's 7th surgery. I don't like to say that it gets easier but I hate to say that we kind of have the pattern down. The anxiety and worry is still there and will always be there. The hardest part now, is that Tyler is older and begins to realize that something bad is going to happen when nurses start messing with him. It breaks my heart. But Tyler had his trusty football with him (which has been with him in every surgery since he got it) to give him some comfort. He came through the surgery with flying colors and the doctor said he was doing so well that she discharged us that same day. Tyler's recovery is going smoothly and we are back to our regular routine this week.

 

Before surgery

 

Each leg was marked with a "YES" so they knew where to cut.

After surgery


 The plates next to a quarter so you an see how big they are (the screws were a lot bigger than I thought they would be)

Melaina's Magical Playland

Our town is getting an all-inclusive and fully accessible playground built. Melaina's Magical Playland was inspired by the daughter of Jeff and Andrea Cunningham. Melaina was a vibrant and spunky 3-year old who didn't let a disease like Nemaline Myopathy diminish her spirit. Unfortunately, Melaina is not with us today and won't be able to enjoy the playground, but her spirit lives on in her parents and friends and her passing did not let this mission stop Jeff and Andrea from building this playground. They are such wonderful and caring people I have ever met and commend them for taking on this mission. This playground will be a place for ALL kids to play side by side with one another. The playground broke ground earlier this year and hopes to be completed by this fall.

Unfortunately, this past weekend there was some vandals at the playground site and someone decided to damage some of the equipment. How can some people be so inconsiderate and have no respect? I hope they find who did this and have to pay the consequences.

They are still raising money to help cover budgeted expenses and now with these vandals they are having to repair equipment before it's even finished. This is a set back but this playground will still be built. Any donations are always appreciated and can be mailed to:

Melaina's Magical Playland
PO Box 211
Cape Girardeau, MO 63702