Shriners Visit

This week we are setting out on a new adventure. We are headed to Chicago to see an Orthopedic Surgeon at The Shriners Hospital. This is just another part of my quest of making sure we are doing everything we possibly can (within our means) for Alex.

Getting a second opinion is never a bad thing, and as Alex grows, his tone and muscles get tighter and harder to move. I can't imagine what this must feel like for him and over the past two years he has been receiving Botox injections in his legs to reduce the tone. The problem with the Botox is that eventually his body won't accept it like it is now and it will no longer benefit him to  receive it.

We have to be ahead of the game, so we are meeting with this Doctor in Chicago to see what the future holds.

Alex's Grandpa Daryl, is a Shriner and he has told us so many wonderful things about the Hospital and all they do with the children. Chicago is the closest hospital to us here in Michigan so we thought we would give it a shot.

I am hoping to get some guidance and a clearer picture of what the next couple of years will hold for Alex. Where we need to go, what we need to do to help him, guide him and allow him to excel.

Cerebral Palsy is not a death sentence by any means and with all of the technology and medical advances out in the world today, we are open and willing to try new things for Alex as long as it is safe and non-life threatening.

We are hoping that the appointment will be promising and give us more insight to help Alex along the way. So pray for us as we embark on this journey and as always, hope for the best.

Big Deal Kind of Day

 

Today is a big day in the Williams household. First and foremost it is World Cerebral Palsy Day which means a lot to us for so many reasons. In my four years of learning about CP and advocating for Alex, I have seen how little research is actually done with this disability. There are over 17 million people in the world living with CP and it just blows my mind that there is so little to go on.  It just seems like no one has any answers and everything is all a guessing game or a wait and see kind of game. Hopefully dedicating a day to this will bring more awareness and future research.

I am not sure about other areas of the country – and I could be wrong in saying this, but there is nothing here in Michigan that I have found that directly raises money for Cerebral Palsy. There are a list of other disabilities that have walks and runs and fundraisers that are held, but I have found nothing in four years that would include us as a family to raise money for CP Research. With so many individuals in the world affected by this, why wouldn’t there be more out there? The only thing that has brought awareness to the area was the boy who carried his brother (who has CP) 40 miles. http://www.cbsnews.com/news/michigan-boy-carries-brother-with-cerebral-palsy-to-raise-awareness/ I think this is a great story - as are all CP related stories, but there needs to be more.

 

Secondly, I went back to work today after being a stay at home mom for four years. I am working as a Part Time Office Assistant for a local newspaper publication. I am really hoping that it works out because the hours are great, the location is great and so far the people are really nice. I was a bit nervous going in today but all went well. There is always room for advancement I am told, but I am perfectly happy with what I have been given. It seems like the perfect job to inch my way back into the workforce.

So, cheers to my beautiful son who is living with Cerebral Palsy, cheers to me and my new job and cheers to October; the best month of the whole year!!

 

 

Alex's Bike

Some of you may remember back in March we entered Alex in The Great Bike Giveaway contest. Unfortunately, he did not get enough votes to win one of the many bikes available and even though we were disappointed, we figured we would try again next year.

You see, special needs bikes (also known as adaptive bikes) are not cheap. The base price is usually over $1,000 and then you take on the additional things that we need for Alex and it can be anywhere from $1,500 to $2,500 depending on the vendor. WAY OVER WHAT WE CAN AFFORD.

In these kinds of things, people share and word travels. Out of no where, people you have never met or have met the one in need open their hearts and their wallets and do the unthinkable.

In our journey, it was my Aunt Sue who shared the voting process with her co-workers. One of those co-workers came to her and told her that if Alex didn't win, that he would make sure he got the bike. At first I didn't believe that it would happen. You know how some people will just say things and never follow through....I didn't get my hopes too high, but I was hopeful for Alex.

Well, he followed through and not only donated money himself, but so did a handful of other people. These people are complete strangers to us. My Aunt only knew the guy who made the promise. I cannot tell you how overjoyed I was and how grateful we are to all of these generous and loving people.

I went out and bought individual Thank You cards and hand wrote personal notes to each of the people who donated and made this dream come true for my special little boy. I even included a picture of Alex on his bike with a smile, because his smile will make anyone's day better.

He has had his bike for a couple of weeks now and just loves it. Not only is it a bike for him, but it does amazing things for his leg muscles. Just the other night I had him ready to go in the driveway and he took off down the driveway by himself!!!

I am SO thrilled that he has a bike of his own and can ride alongside Evan now. None of this would be possible without my Aunt Sue and the wonderful people who gave us money out of their pockets so that our son could have a bike. Thank you will never be enough. We will forever be grateful.

 

Alex enjoying his new bike with Evan by his side!

First Day of Pre-K

Summer isn't officially over yet but the kids are going back to school and soon the weather will be getting cooler here in Michigan. Summer always seems to go by so fast. It seems like yesterday we were celebrating Alex and Evan's preschool graduation. How quickly the three months have gone.

Today, my boys embarked on a new journey. All day Pre-K. I have mixed emotions about today. Over the past few weeks I have been saying how I can't wait for them to go to school. Today my heart aches a little. They have grown up so fast, from their teeny tininess in the NICU to today. Watching them grow and evolve is so amazing.

For the past four years I have been with them everyday; every step of the way. I guess I am feeling this way because they will be going full time, Monday thru Thursday. The bus will pick them up at 8 and they won't be home until 4. In a way I feel like I am already sending them off to Kindergarten.

 I am excited for them to be in the same class together this year. Last year they were in two different classes two different schools. That was a little tough on me. I did lots of driving and spent a lot of money in gas. This year I wanted them together, and it is nice to have that option with Alex being in special education. I have a good feeling about it all and I am hoping that they do well together.

I am feeling a little lost right now. As much as they can drive me batty some days, they are my babies, my little side kicks and I miss them. I am hoping that the time away will improve our time together. I am sure I will get used to the days I am away from them, but today there will be two small pieces missing from my daily life. My Alex and My Evan.

Here are my sweet boys on their first day this morning. I love them so much!!!

Alex: Four Years Post Diagnosis

Today is a day that will forever stick out in my mind. It was on this day four years ago when the Doctor pulled Eric and I into a private room in the NICU to tell us that our four week old baby boy had brain damage. I don't even know how to describe the feeling inside me after he told us.

I didn't know what to say, I didn't know what to do. I had never heard of PVL (Periventicular Leukomalacia) and I knew very little about Cerebral Palsy.

Being told that the spectrum of damage could result in as little as a pair of glasses to never being able to walk or even fully function isn't exactly easy to process. Everything became a waiting game.

There is nothing worse than the unknown. It wasn't like I was going to walk back into the NICU and see any difference in Alex as I did when I walked away from him 10 minutes prior.

Eric and I asked a few questions, and I walked out of the room and went directly to Alex. I tried my best to keep my composure as I was surrounded by other parents with preemies. Wondering what they were going through, wondering if they would get the news we just got, wondering what struggle they were dealing with at that moment.

I cried for days. No one knew but me, Eric and the nurses and doctors in the NICU. We didn't feel like we had enough knowledge of the subject to tell our friends and family at that moment because we knew they would all have questions. We were told that this process would be a waiting game so that is what we decided to do. Wait. We waited to see what Alex would do, how he would develop and go from there.

Nearly eight months after we found out, we began to tell family and friends. Evan had begun to crawl and make his way around a room while Alex just lay there rarely attempting to roll over. We knew people would begin to wonder.

We had done enough research over the eight months, had an MRI done and had seen a neurologist to feel confident to answer questions our family and friends might have.

As expected we got a lot of ignorance, but we also got an immense amount of emotional support.

Alex will never "snap out of this" like some people may think. It is a disability that he will have for the rest of his life, but Eric and I won't let it hold him back or keep him down.

He has been in physical therapy since he was 10 months old and works so hard at every session. I am very proud of his strength and his ability to keep going even when he gets tired. We still don't know what his future holds, but we do know one thing. That he will forever have the support of his brother Evan, and of course Eric and myself.

I could ramble on all day about this. I just wanted to reflect on the day and mention how proud I am of Alex and how far he has come in four years.

Some days are harder than others. I wish that he and Evan could run and play together outside, I wish he could get around on his own and not have to scream when he is frustrated. I wish I wouldn't get frustrated but it is emotionally and physically hard on me. That is hard to admit. It is hard to come to terms with but it is what it is.

I take one day at a time and hope for the best for Alex and his future. I will never give up on him. He has given me too much to believe in. I mean, look at him.

Our Georgia Trip

You know it is a busy summer when I can't keep up with my blog posts! After school got out in June, time has been flying by and I am way behind, but I promise to catch up sooner or later.

On June 18, 2014, The boys and I hit the road and headed to Georgia to visit our family and have a little vacation. We were there 18 days total and we had the time of our lives. Eric was able to join us for 10 days as well. It was a great trip for the boys. They got to spend a lot of time with their cousins and explore the waterfalls, rivers and mountains of Northern Georgia.

The weather was hot and humid, so we spent four days at the rivers while we were down there. I hiked the Tallulha Falls Gorge with my sister in law, we visited Black Rock State Park, did a day trip to Gatlinburg, TN and drove through The Great Smoky Mountains. We visited five waterfalls, did some shopping and even took the boys to their first movie theatre movie. We went to a place called Goats on the Roof - where there are really Goats on a Roof, we saw the 4th of July parade and fireworks too. The trip was crazy, busy and amazing. We had a wonderful trip and made countless memories. I wish I could share the hundreds of pictures I have because they are all beautiful and unique in their own way, but I can't so I will share some of my favorites.

Waterfalls

 

 

 

Black Rock State Park

Tallulah Falls Gorge

Vultures

 

 

Goats on The Roof

 

 

 

River Days

 Candid Shots

 

 

The Smoky Mountains/Gatlinburg

 

 

 Well that is our trip. I hope you enjoyed the pictures as much as we enjoyed the experience.

**One thing I don't have a photo of is the moment I almost tipped my sister in law's truck over in a ditch. I have to note this moment because it was so funny - but you had to be there. I was on a side street turning around, backed up too far, the back end got in the ditch and the truck began to tip. I screamed, hit the gas, squealed the tires and flew out of the ditch. All my sister in law Tappatha said in the most serious voice was "Nice recovery" then we busted out laughing.**