Friday, July 27, 2012

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.


Wednesday, July 25, 2012

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.

Monday, July 16, 2012

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)

Tuesday, July 10, 2012

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

Monday, July 09, 2012

Montauk Trip

Growing up, my family went camping every year. We would travel 3 hours to Montauk State Park and go trout fishing. We created many memories and still to this day my mom and dad, brother and his family, and my sister and several other friends go camping out there every year. However, I have not been there for almost 10 years (ever since I met Travis).

The day finally came when I convinced Travis to go, with a little help from my dad. He enjoys fishing but wasn’t sure about trout fishing. It is not your typical fishing. There is different fishing line you have to use, different type of bait, etc.

Now that we have started our own family, I was hoping this may be a start of our family tradition. We went this past week. My parents, as well as my nephew came along for the fun.

I say that we camping, but we weren’t necessarily roughing it. We had a nice air-conditioned cabin, with a kitchen and even a TV. When I was younger, we always tent camped. After the heat that we have been having lately, I couldn’t image sleeping out in this heat. Let’s just say, time has changed and kids nowadays are spoiled. That goes for me too, LOL!

Overall we had a fun time. Although it may take quite a bit more convincing to get Travis to go again. I don’t know a single person that has enjoyed trout fishing on their first time. So we shall see if this becomes a tradition for our family.

Tyler caught 2 fish, which is one more than his dad.

One afternoon while the guys fished, my mom and I took the kids for a walk around the campgrounds. We even found a playground for the kids to swing. Of course, Tyler enjoyed swinging as he always does but Kenna still was not sure about it. Tyler even got to try out his new wheelchair (which I will post about in another post).

Sunday, July 08, 2012

Kenna - 8 months old

Dear Kenna,

Well I was doing good and keeping up with your monthly birthdays, but your 8 month snuck up on me. This past month was so much fun! You are such a happy little girl. You still only have 2 teeth and you haven't quite got the crawling thing figured out yet but you are getting close. You get up on your hands and knees and do the whole rocking back and forth. So it won't be long.

I love listening to you babble and your choice of sound is still 'da'. When I talk to you, I love how you intensely watch my lips and you try to mimic them. However, you think it's funny when I say 'mama', you laugh every time. I joke and say you will say every word before you ever say mama. Time will tell. 

We have several different nicknames for you already, the first is our little cookie monster, because when you eat you make the cookie monster sound with every bite. And the other is our little monkey. You are always doing something silly, either making a silly face or balancing your toys with your feet. You like to hold your bottle, toys and whatever you can find with your feet. It's quite funny to watch until you try to hold a toy that is to big and heavy and you can't quite balance the toy with your feet and you drop it and it hits you in the head.

We have also learned that 3 hours is your time limit of being in a car. We have made two trips this past month, one to Nashville and the other to Montauk. Nashville is 4 hours away and the last hour was not fun for anyone in the car. We also went camping at Montauk State Park, which is 3 hours away and it was a much more pleasant car ride. So I guess for now we are limited on where we go. We will have to put off going to the beach awhile longer, lol!
Happy 8 months!!!

Love, Mom