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

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).

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

2012 Hydro Family Gathering

I love that we live in the age of technology and the internet. After receiving Tyler’s diagnosis of Hydrocephalus, the internet allowed me to reach out to other family members living with this condition. 2 years ago we decided to turn our online friendship into an “In Real Life” friendship. We met 6 other families in Niagara Falls and decided that this needed to become a tradition of meeting up. So this year we decided to meet up in Nashville. Our group has grown since then and there were 16 families total that made the trip, traveling from all over the country – from Washington to Texas to Virginia. It was so good to see everybody again and met some new faces. I couldn’t ask for a better support system.

Kenna - 7 months old

Another month has passed. I feel like we are heading toward the months of a busy toddler and she is only 7 months old. Kenna seems to be constantly on the go. Rolling is still her method of getting around. But man, she is quick. She can get to one end of the room to the other in a matter of seconds. I can't imagine once she starts crawling and let alone walking. How will I ever keep up?

Kenna also got 2 teeth this past month. Her 2 bottom teeth popped through without us even knowing. Let's just hope the rest come in this easy. She is also learning to make new sounds, which makes for some funny faces.