Balloon Launch

On August 22, we got our family and friends together to raise awareness for SMA. August was National Spinal Muscular Atrophy Awareness month, and we really wanted to do our part to raise awareness for SMA. We did a small balloon launch, and every balloon had a tag with an SMA fact attached to it. We passed out information on SMA, and we took donations for Families of SMA. We had a great turn out of family and friends and was able to raise $569 for FSMA. We were excited to be able to pass that along to help provide family support and fund research for a cure. Alexander had a great time being with family and friends, and he loved all the balloons we had there. Alexander even made the front page of our local paper. They wrote a wonderful article about Spinal Muscular Atrophy and included Alexander's story in the article. He thought it was pretty cool to see himself in the paper. Thank you so much to everyone who donated their time to come raise awareness with us, and to all of those that donated to FSMA in support of Alexander. We truly appreciate all the support we receive from family, friends, and our community.

Alexander and Kenzie at the Balloon Launch

The Launching of Balloons

Summer Fun!

We have all had a very busy summer! Alexander has done so many fun things, and I think he has had a pretty great time! I have unfortunately been so busy that I have not updated our blog much. So I just wanted to post some pictures of the fun things we have been up too!

Alexander enjoying his first boat ride on the river with Daddy!

Alexander eating a Reese Cup Blizzard with Daddy!

Alexander about to see Toy Story 3... his first time at the movie theater!

Alexander with his tools in Daddy's garage!

Alexander painting during OT and PT!

We hope everyone enjoyed their summer as much as we did!

California Disneyland

After we went to the SMA conference, we decided to take advantage of being in California and we drove down the coast to Disneyland. Alexander loves all the Disney characters, and we could not pass up the opportunity for him to meet Mickey Mouse! We arrived at the Disneyland Hotel, and I don't think Alexander quite knew what to think. Everywhere he looked he saw "Hot Dog" (Mickey Mouse)! We got all our stuff to the room, and decided to go check out Downtown Disney. Alexander loved everything about this place. He saw pictures of all his favorite characters everywhere! We had a great evening at Downtown Disney, but we were all ready to go to Disneyland that next morning. Alexander had no idea how much fun he was going to have the next day.

We got up and headed to Disneyland! We could not wait to get in and start having fun. Since our hotel was within walking distance, we decided to let Alexander take his wheelchair in. He did so well with his wheelchair, and lasted about 8 hours in it! He got to see so many characters, and they were all so great to him. They would run up and hug him, and he absolutely loved it! He loved all the characters, but got a HUGE smile on his face when he saw Mickey Mouse. He kept calling him Hot Dog, and when we explained to Mickey why Alexander called him that... Mickey started doing the Hot Dog Dance. I have never seen a happier little boy!

Alexander did amazing on the rides, and he is definitely a little thrill seeker. He could not get enough of the rides, and Disneyland was incredibly accommodating to him. He rode Pirates of the Caribbean (twice), Dumbo, Casey's Jr. Circus Train, It's a Small World, Winnie the Pooh, Haunted Mansion, Peter Pan's Flight, and many more!! We were all so impressed with how well he did on the rides.

We all had an incredible time at the park, and will never forget this day!

Alexander at the Disneyland Hotel with Mickey!

Alexander, Daddy, and Lego Woody!

Mimi, Alexander, and Nana at Disneyland!

Daddy, Alexander, Mommy, Mimi, and Nana meeting Mickey Mouse!

Alexander and Mommy about to ride Dumbo!

Alexander being goofy in his Dale hat!

A very tired Alexander, asleep in his stroller, at Disneyland!

California SMA Conference

Sean, myself, Alexander, my Mom, and Sean's Mom all traveled to Santa Clara, CA for a Families of SMA Conference at the end of June. Alexander and I got to go on our first flight together, and I was definitely more nervous than he was! He absolutely loved flying, he just kept saying "weee" the whole time we took off, and wanted more when we were up in the air. He was a great little flier! We were all so excited, but at the same time didn't know exactly what to expect since it was our first conference. When we got out to California and got to our hotel, we immediately felt welcomed. It was so exciting to see all the other SMA kids there, and we knew that Alexander was going to have a great time. They had many workshops for us to choose from (OT, PT, fund-raising, etc.) , a reception dinner, and a kids carnival throughout the 3 days. I have to say that meeting all the other parents and kids was one of the most meaningful parts of the conference. We were actually in a place where we didn't feel alone because we knew that all the other families were going through the same things. We learned a lot of helpful hints from the other parent's experiences, and were able to share some of ours with them. We also learned a ton about the research that Families of SMA sponsors, and we are looking forward to setting up a fundraiser to help support finding a cure! This conference was an incredible experience, and was an incredible opportunity for all of us. Alexander had a blast every single day we were there. He loved being able to drive his wheelchair every where and loved seeing all of the other kids in their wheelchairs! Alexander had a blast at the carnival because every one was so accommodating and fun! So, obviously we had a wonderful time and can not wait to attend next year's conference!

Our views from the hotel!


Nana helping Alexander drink some Cali OJ... he loved it!

All of us at the dinner reception!

Alexander in a Standing Dani!

Alexander driving to the carnival!

Alexander being goofy at the carnival!

Alexander wheelchair bowling!

Pool Fun!

This summer we decided to get a pool for Alexander! We have heard great things about water therapy with SMA kids, and thought we would give it a try! So far, Alexander LOVES the pool! He really loves the freedom he has in the pool. He loves splashing, and being "thrown up" out of the water. We try and get in it as much as possible because he just lights up in the water. He is definitely a little fish!

Alexander splashing with Daddy!

Alexander and Mommy in the pool!

Daddy throwing Alexander up out of the water!

Standing!

I am so happy and excited to tell EVERYONE that.... Alexander stood for the very first time on Thursday, May 20! It was for 2 to 3 minutes during his Physical and Occupational Therapy. Then, on Monday he did it again several times! He has to have his bracing on, and does best slightly propped up against the couch, but he is STANDING! We were told from the very beginning of his diagnosis of SMA that standing would NOT be possible! He proved everyone wrong!!! We could not be more proud of our sweet boy. I know that many people know the excitement that these milestones create in a family, but when you are told it will never happen and it does the excitement and joy can not be described!

Alexander, we are all soooo proud of you and love you very much! This just proves that you can do anything and everything you set your mind too! Some things may take longer than others, but with hard work you can do it! We love you Pumpkin Pie!

Two Years Old!!

I have been a little behind on posting these pictures, but I wanted to share

Alexander's Two Year Old pictures!

SMA Walk N Roll

A couple weekends ago, we had the wonderful opportunity to attend our first SMA fundraiser in Cincinnati, OH. I honestly had no idea what to expect, but I was very excited to go. Sean, me, Alexander, Julie (Sean's mom/Mimi), Cheryl (Sean's sister), and Andy (Cheryl's boyfriend) all got to make the trip down to the event. It ended up being an incredible weekend! We drove down Friday night so we could be ready bright an early for the walk. The walk was amazing! We were there for maybe 15 minutes getting Alexander in his wheelchair, and right away one of the heads of the walk recognized us as a new family and introduced himself. They took a ton of pictures of Alexander and all the families were super nice. We even met a few families who would also be at the conference in California this summer! They had a raffle, information on SMA, and some fun kid's games! Alexander even won one of the raffle prizes (a two night, three day stay at The Great Wolf Lodge.) It was a very uplifting event! Just being around other people who knew what we were going through was a great feeling. Plus, all the kids with SMA were so amazing! It just felt like another family that we fit into perfectly!
After the walk, we went to the Newport Aquarium. Alexander absolutely loved it! He repeatedly said fish, fish, fish! He got to see so many cool fish, toads, alligators, and so much more! He even got to pet a crab and a shark. He thought that was the coolest thing ever. He would pet them and say more, more, more. He did not want to leave! After we left the aquarium, we went back to our hotel for a little bit of rest! Then, we decided to go to Dave and Buster's! We ate dinner and played a ton of games! The weekend was amazing and so much FUN!

Alexander playing on the car ride to Cincinnati!

Sean, Alexander, and Cheryl at dinner Friday night!

Alexander in his wheelchair at the SMA walk!

Alexander asleep on the ride to the aquarium!

Sean and Alexander looking at the aquarium!

Andy helping Alexander pet a shark!

Sean and Alexander driving a car at Dave and Busters!

Busy Busy

These last few weeks have been extremely busy! Alexander has had several doctor appointments, and we have been busy driving back and forth between them! He had his two year check-up with his Pediatrician! She seems to think he is doing very well, and it was so nice to get a good report from her! She did suggest that we start seeing a Physical Med & Rehab doctor to help us make sure we are getting everything Alexander needs as far as bracing and equipment. We will see her in May! We also had an appointment with his Neurologist at Riley. I told Alexander we were going to see Dr. Walsh in the car, and he replied... "Dr. Shhhhh" it was so adorable. Dr. Shhhh also, said Alexander seems to be doing very well! He started Alexander on a medicine that has shown some help in children with SMA gain some strength. It is not a trial medication, but during the clinical trials it went both ways. It helped some, and didn't affect others. He said we will try it for 6 months just to see if it helps Alexander at all! So keep your fingers crossed!! We also, had to take him to get measured for new AFOs (ankle/foot braces). He has had his since August, and definitely needs bigger ones. Hopefully we will get those in the next couple of weeks. Alexander also went to the sleep clinic, and we were very relieved that his sleep apnea was so mild, and they just want to do another sleep study in about a year. I think that is about it on the doctors we saw! So overall it was finally good reports across the board. His weight, which is always a concern, had been doing very well. Then, last week his nutritionist came and he had grown another 1/2 an inch and lost 7 ounces. It doesn't seem like a large loss, but for him it is huge. They are putting him on Kid Essentials 1.5 cal, which has about 115 more calories in each bottle. At 3 a day, he will be getting about 345 more calories a day. Hopefully this boost in calories will help get him back on track and prevent Alexander from needing a G-Tube! His therapists decided they though it would be good to start Developmental Therapy, and we will begin seeing her next week. She will be able to help us prepare Alexander for Preschool and work on anything else that we need. We have heard great things about her, and can not wait to meet her. Overall he is doing pretty well!
On a fun note, he is loving the nice weather. He loves riding in his stroller outside, and swinging in his swing. He also, loves playing out in daddy's garage while daddy works on the things. It has also given him more time to practice his wheelchair, and he is getting so good at driving it! I think we are going to start practicing on turning... so watch out! These are just a few pictures from the last few weeks! Hope everyone is doing very well, and enjoying the spring weather!

Alexander in his stroller waiting for his Neurologist!

Alexander in his stander enjoying the weather!

Alexander and Hailey sleeping... they just love each other!

Second Birthday and Easter

Alexander had a great birthday! He got to go out to dinner at Red Robin, and they gave him a birthday sundae. It was almost bigger than him. After Red Robin, Mimi took us to get him some new clothes for his two year old pictures! We then went home where he got to open the last of his presents from dad and mom, and got a birthday cupcake. I think he had a great day, and I loved being able to spend the whole day with him. We also took him that weekend to get his picture taken. They did such a great job with him, and I think he loved the attention the photographer gave him. We got some great pictures of him, and he looks like such a big boy in them.
Easter was a great day. The Easter Bunny visited both Alexander and Hailey. They got a ton of fun stuff. Mimi took us out to breakfast, and then we spent the rest of the day outside enjoying the beautiful weather.

Alexander before his Birthday dinner!

Alexander about to make a wish!

Hailey got visited by the Easter Bunny!

Alexander did too!