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!

Last Day Being ONE

Today was Alexander's last day as a one year old! It was such beautiful day out, so I took Alexander and Hailey on a nice, long walk to park. Alexander and I loved getting out of the house and enjoyed the fresh air. After his nap, we spent some time coloring and playing with play-doh! He loved every second of it. He really has gotten into the crafty things and loves to be creative. I definitely had some fun too. I made him some glasses from play-doh, and he actually wore them for a few. He thought that was hilarious! He then had to watch a little Mickey Mouse before dinner, and after dinner we read a couple of books before bed. We love watching our little boy grow up, but can't believe he will be 2 tomorrow! We love you Alexander!

Alexander coloring (He had to have two markers!)

Alexander in his Play-Doh glasses!

Alexander after dinner!

Last time going to bed as a One Year Old!

Birthday Party

This past Saturday, we had Alexander's 2nd Birthday Party. It was so great having so many of our family and friends at our home to celebrate. As most people know, Alexander's favorite thing is Mickey Mouse (or Hot Dog as he would say). A little more on the Hot Dog name, the new cartoon has a song they sing at the end of every episode called the Hot Dog Dance. Therefore, Mickey Mouse in our house is called "Hot Dog!" Since, Mickey is his favorite we naturally had a Mickey Mouse party for him. We kept him in his room as we decorated, and when we brought him out he got a huge smile on his face and said "HOT DOG, HOT DOG, HOT DOG!" We were so excited that we could make him that happy with party decorations! He did get a little overwhelmed with all the people that were there, but I think after about half an hour he started to enjoy all the attention. He sat up in his highchair the whole time he opened his presents, and he LOVED every single present he got. Thank you to everyone for all the generous gifts! He liked the singing and the candles on the cake, but once again he did NOT eat any of his cake! And he loves cake. I think he just does that because he knows it gets to me! I like to get him his own little cake so he can just dig into it, and just like last year he did not want to eat even a little bite. We know he had a GREAT time, and enjoyed seeing all of his family and friends.

Cousins!

First off, I want to apologize for not updating my blog recently. We have been extremely busy with remodeling a few rooms in our house, and unfortunately I have not really sat down at the computer for a while. Alexander is doing very well right now. We had an appointment with the Pediatrician a few weeks ago, and she was extremely concerned about Alexander's weight. He had dropped below the first percentile, which is NOT good. We are trying really hard to prevent a G Tube, and she recommended substituting Pediasure for his milk (more calories in the same volume). Therefore, he now gets 24 ounces of Pediasure a day, instead of milk. His Nutritionist came this week, and in two weeks he has grown 1 inch and gained 7 ounces! So, we are back on track and very excited about his weight and height (though his height has never been an issue). It looks like Pediasure is going to be our new best friend!

Moving on to some fun we had this month...
One thing that makes Alexander very happy is his baby cousin, Mikayla! He absolutely loves everything about her. It is so funny when he sees my sister Allie because the first thing out of his mouth is BABY. This past month we were able to go to Chuck E Cheese with Mikayla! They had such a blast when my mom and I took them, so we went back again with my sister too! It actually worked out perfect because the two of them were able to squeeze in to the little rides together and help support each other. They are so good with each other, and we couldn't be happier that they already get along so well! It is nice being able to have another little one for Alexander to play with! Alexander loved all the rides, but I think his favorite was playing skeeball. We took him right up there with his stroller, and he would hold the ball as I helped him roll it! He loved it, and did it again and again and again! We had a blast and can't wait to go back!

Here's a couple pictures of the fun they had together!

Sleep Study

Alexander had his first sleep study on February 11th, with his previous breath holding spells they wanted to be sure he was breathing well at night. So we packed him up at 7 pm and headed to Clarian North (Riley) to have his sleep study. He was such a good boy the whole time. When we first got there we had to register, and as we were leaving the registration lady, he looked up and said "Thank you!" I was just instantly so proud of him. We strive to teach him please and thank you, and he will say it when we tell him to, but hearing him say it on his own made me a very proud momma! The sleep lab came to get us, and we went to the room we would be in. He did so well! He fussed a little when the lady was putting all the wires on his head, but over all he did great! By 10:00 they were done, and he was asleep by 10:30! I was so excited because my biggest fear was him not going to sleep! I wanted it to be a good test, so we could get accurate results. We got the results this week, and they were not great, but not real bad. They said he did have a few times when his stats dropped, but they all came right back up. His oxygen levels never dropped below 87, which is a good thing. He had no obstructive apnea so there is no fear of tonsils blocking his airways, but he did have a few central apnea episodes. Basically, there were a few times where his brain did not tell him to breath. So, we are being referred to the sleep clinic at Riley. They will help us decide if he is at a point where he needs any breathing assistance at night. Our pediatrician did say that at this point, she personally thinks he does not need anything, but we would want to do another sleep study in 6 months. So overall pretty good results, they were not perfect, but they could have been much worse!

Here are a few pictures of him at his sleep study...

Super Bowl

Even though our Indianapolis Colts did not win the Super Bowl, we had a great time watching the game and cheering them on. Alexander did not quite understand what was going on at first, but by the end of the game, he was laughing at Mommy and Daddy cheering and yelling at the tv. I must say, I think his favorite part of the game was halftime when he got to eat one of the Colts cupcakes his Mimi brought over! It was hilarious to watch him dig into the icing on the cupcake with his fingers... at one point he had four fingers, caked in icing, in his mouth trying to lick it off! I thought once the icing was gone, he would be done, but I was definitely wrong. He picked up the cake part with both hands and shoved as much as he could in his little mouth! I think it only took three or four bites for him to have the cake gone! Needless to say, he LOVED the cupcake!!!

New Best Friends

The Davis family welcomed a new member to our family... Hailey Renee!!! We have thought many times about getting a puppy for Alexander, but never really made the final decision to get one. With everything we have going on with Alexander, we just weren't sure about taking on a new puppy. Then, a couple of weeks ago we had the opportunity to rescue a puppy. I saw a picture of this puppy, and fell in love... I knew we had to have her! I think we were both a little nervous about bringing a puppy into the house, knowing in our minds that Alexander wouldn't be able to defend himself if needed. Well, this puppy definitely has a new brother.... Alexander loves her!! I actually think it was the best thing for him. When he is laying in bed, he fights against his own weakness to reach and pet Hailey! She is so good with Alexander, and he is so good with her. They even play ball together... We were driving home the other day, and Alexander repeatedly said "BALL, DOG, BALL, DOG!" I think they are going to be the best of friends!!!

Ted William Davis

For those of you who don't know, Sean's father lost his long, fought battle with Vascular Disease on Saturday, January 9th, 2010. He was an incredible man, with a heart of gold. He was loved by so many and will be missed tremendously.

Ted William Davis, 59, Arcadia, passed away at 9:40 a.m. on Saturday, January 9, 2010 at IU Hospital in Indianapolis. He was born on November 6, 1950 in Elwood to Ray & Rena Davis. On August 11, 1973 he married Julie Ann Scherer.

He received his BS from Indiana State University and his MAE from Ball State University. He was employed as a Speech Pathologist at Hamilton Southeastern School Corporation for 35 years. He also was employed as the Building Commissioner of Arcadia. He was a member of Emanuel Lutheran Church in Tipton.

In addition to his wife Julie, he is survived by his daughter Cheryl Ann Davis, Indianapolis; son Sean William Davis and wife Anastasia, Tipton: one grandson, Alexander William Davis; two sisters, Lisa Mahan, Fishers and Chris Isaacson and husband John, Glen Ellyn, Illinois; one brother, Mark Davis and wife Suzi, Brownsville, Texas; several nieces and nephews. He was preceded in death by his parents and a brother-in-law, Mark Mahan.

Friends may call from Noon until 3:00 p.m. Saturday, January 16 at the Emanuel Lutheran Church, 1385 S. Main Street, Tipton. A memorial service will follow at 3:30 p.m. with Rev. Robb Roloff and Rev. Kurt Gremel presiding. Private family burial will take place in Zimmer Cemetery, Noblesville.

Memorial contributions may be made to Families of SMA, 925 Busse Road, Elk Grove Village, Illinois, 60007, in support of his grandson. Envelopes will be available at the church. Young-Nichols Funeral Home, Tipton, is in charge of the arrangements.