Treadmill Training

So we were informed of this great research study being done(thanks Lisa) with treadmill training and kids with Cerebral Palsy. Basically they would be put on the treadmill with the lite gait (red blue and yellow contraption) for about 45 minutes 3x a week over a 4 week period. The purpose of the study would be to see if this training would help with weightbearing and/or walking depending on the child's abilities. Then this study would be presented to insurance companies as a justification for treadmill training on a regular basis. So I was very excited that Evan would be getting this training because it would be great for endurance and trunk control.
Evan had another idea. He thought it was fun to lift his feet up of the treadmill and just hang, kind of like a swing. We tried many different ideas with him but he was never able to participate on the treadmill long enough to actually do training or raise his heart rate. So we decided on Friday to discontinue him from the study. He may be used as a comparison to another girl who is similar to him in abilities and is activly participating in the study, Evan would be an example of what no training would do and the other girl would be and example of what training does.

Evan was probably only on the treadmill on the first day. Friday we could not even get him up on the treadmill at all. We tried ot get him up on the adult size one but he soon figured out that if the turned around and sat down while it was on it would slide him down to the end. He would have done that over and over again.

Even though he is non verbal he certainly has ways of telling me when he does not want to do something anymore. I am bummed because I really wanted him to get the benefit of this training but at least I do not have to drive from Elk Grove to Davis 3x a week.


You can see the swinging really well in this video but the video is in the wrong position, horizontal instead of vertical. I do want to add that Grandma Barbara just thought it was the funniest thing that he would do the swinging in the harness. Evan does bring lots of smiles and laughter to our lives that is for sure.

Awesome Speech Session Today!

Evan had an awesome speech session today, he was verbalizing so well and even at some point without being asked to. In this video Evan was in his Special Tomato Sit right chair which ahs a three point harness and this is why he was able to stand up and be so active. Check out the videos of him in his speech session.

In this video the speech therapist pulled out the coolest Elmo toy. I think it is a must have for working on Arm strength. She got it at Target.

In this video Evan is doing the sound "mmmm" for more and practicing putting his lips together, which is very hard for him to do. When you see Evan put his hands in front of his face or make gestures it is because he is copying the therapist as she is showing him to put his lips together.

Sophia Marie Bon

The Proud new Father(mom was not up for a pic)
My brother and his fiance Alicia welcomed their daughter Sophia Marie Bon into the world today at 8:57am. She weighed 6lbs 15oz and is 19 1/2 inches long. Mother and baby are doing well.

Isn't she the sweetest thing?

Her mom wanted lots of purple and green and not a lot of pink. The baby's room is so cute. I
think Purple/Lavendar is a nice color for girls.
I really do not like this picture of me, but I am a proud Auntie so I am posting it.
I think it has not yet hit me that my baby brother is a dad now. I am so happy for him and Alicia, they are so great together. I think he met her at the perfect time is his life. You see the two of them together and you can tell how much they love eachother. When I walked in the hospital room tonight and he was just amazed at the whole birth process. He said "Stacy, wow, when the head came out that was so cool!" or something along those lines. I can't wait to see him be a dad and watch his daughter grow. Alicia is so cute as a first time mom, she says that she can't sleep because she is so excited and she just stares at the baby all the time. It is so sweet to see her and it brings back all of the wonderful feelings you have when a new baby is born. I am sad that I will not be having any more kids but that is something that has to come to end for all women at some point (unless you are Michelle Duggar). I am so excited that I will be able to care for Sophia when her mom goes back to work but I know how hard it will be for Alicia because she wants to stay home with her so bad. It is times like this I am feel so blessed with my life. My parents are healthy, I have a good relationship with my husband, my kids are all around healthy, I have a good relationship with my parents and my siblings and my in -laws. I have not suffered any losses of people close to me. My grandmother is 84 and still going strong. I have a lot to be thankful for and I feel so blessed.

Evan's Big Boy Bed & Weighted Blanket

Here is a long awaited picture of Evan's weighted blanket that I made him. He could probably take it or leave it. I already have plans for another one in the works.

We decided that it was time for Evan to get a big boy bed and we thought we could save money by going to IKEA, well we ended up picking out a bed but it was a toddler size bed, we needed a twin bed so Rudy suggested that I look online at Craigslist. I got the bed I was looking at IKEA which was about $149, plus a mattress $60, a desk and chair all for $100 from a nice family in Elk Grove. I was so excited. The bed sits lower to the ground like a toddler bed but it is wider than a toddler bed and can extend from a small size to a full twin size bed. I just put the boys from sharing a room to having seperate bedrooms, and so I extended Evan's bed out fully so I could stretch out on it when I lay with him at bedtime or when he wakes up in the middle of the night. I think Evan likes his new bed and he is proud to show it off. Gabriel likes it also and was asking us for one just like it.

Baseball Season is Here

Here are some pics of Gabriel's opening day with Pony League of Elk Grove. His team is the Hammerheads.
Gabriel was so cold standing in line for pictures

Here is a picture of the team

Standing on the field during the National Anthem or actually a bit before it.

The rules are:
1. The rules of the game get posted at the beginning.
2. Each player answers questions about themselves.
3. At the end of the post, the player then "tags" 5 people and posts their names, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.

What was I doing 10 years ago: Well I was probably living with my Aunt and Uncle because I had to leave my house because my sister had just had a baby and I was going to be getting married in August of that year. So that means I will be married 10 years in August.

What was I doing 5 years ago: Five years ago today, I was working at University of Phoenix and Gabriel was 2 years old, I think my sister was living with us at that because they were waiting for their current house to be built. Wow, that was a long six months for all of us. It is not easy living with another family no matter how much you like them. We had 4 adults, an 11yr old Cynthia, my nephew who was 5 at the time, Gabriel and Celeste were both 2yr and my youngest niece Mia was 6 or 7 months old.

Five things on my TO DO List for today:1. Fix breakfast for Rudy and Me.
2. Transfer Gabriel' s stuff into what is currently the playroom, bascially the boys will hav e their own rooms again.
3. Clean the garage up
4. clean my bedroom
5. shipp the stuff I sold on Ebay
6. go golfing with my husband
7. maybe take a trip to goodwill
8. hopefully be at the hospital watching or waiting for my niece to be born.
Ok, I know that is more than 5 but it is good for me to make a list of what I want to accomplish today.
Snacks I enjoy: I love to eat, so pretty much anything. I love chocolate though.

Things that I would do if I was a billionaire: (not in any particular order)
1. Buy land so that me, my brother, parents and sister, and grandma could all live together. I would probably invite my mother n law also because Rudy is her only child. We would have a big accessible playground and hopefully all my friends would bring their kids to play.
2. Put money in the bank for my kids.
3. Buy a bunch of equipment for Alta to give to kids that need it. Donate money to church and Shriners or make a wish. Buy adapted vans for a couple of my friends.
4. Give Francesca money to start the school program and help her run it.
5. Send my husband on the ultimate golf trip.
6. Start a scrapbook store
7. I saw this cool place that was totally accessible for special needs kids, I would want to build one of those.
8. Buy all the neat things I could for Evan that are considered special needs, that cost an arm and a leg.
10. Get Cynthia Guitar and singing lessons and let Gabriel go shopping on Lego.com
11. Take my kids to Disneyworld, Sea World etc.
12.Invest for Rudy's retirement
13. PAY TAXES!!!!!!!
14. Get my masters degree.

Three of my bad habits:1. Nail biting 2. eating when I am not hungry 3. Yelling at my kids.
Five places I've lived:I haven't lived in 5 places so this is going to be a stretch.......1. Pacifica 2. Altawood Ct in SAC 3. 2 different houses on Pullman Drive in SAC 4. Folsom 5. Our house in Elk Grove

Five jobs I've had:1. Camp Sacramento 2. Chubby's Diner 3. Paradise Island 4. Vision Service Plan 5. And the most important, least paying(moneywise), most rewarding A MOM........nurse, driver, accountant, maid, cook, peronal assistant, teacher, nurturer, and the list goes on and on and on.......

5 people I want to know more about (ie "tagged")

I don't know all my blogging friends that well to tagg them.

Adaptive Skateboarding

My little Evan is so creative he is beginning to learn to adapt things to his abilities. Gabriel got a skateboard for his birthday in Feb and Evan has been pushing it around the house, well tonight he figured out how to lay on it and use his right hand to push himself back and forth, it was so cute. I did not get a picture of it but I will. I am already thinking of what a great scrapbook layout it will make. I think having OT at school put him on the scooter board on his tummy probably prompted this with the skateboard. Maybe I should invent a special needs skateboard, then I could make a lot of money and help other special needs kids get equipment and expensive therapies that the school or Alta will not cover. Oh, I guess I better get out of my dream world.

I've been Tagged

Habit: I bite my nails, I try to let them grow out but have not been successfu.

2: Goal: To lose weight before we go to Rudy's family reunion at the end of June, I have 3 months.
3: Random Fact: I am 9 weeks away from completing my Bachelor degree.

4: Another Habit: I alway play solitare when I am on the computer.

5: Another Goal: Be more dilligent with using Evan's Dynavox with him.

6: Another Habit: I am not proud to admit this but I yell at my kids especially when I have to repest myself or when they do not listen.

7. Another Fact: I am just waiting by the phone for the phone call from my mom or brother that my new little niece is on her way. I hate waiting it is almost worse than when I was the one that was pregnant. I can't wait to meet little Emma or Sophia, they are not sure what she will be named yet.

8. Another Random Fact: I have to steal this one from Francesca, I do the same thing. I am definite People watcher.

9. Another Goal: I want to start something of my own....... I would love to do the same thing, open a scrapbook store, or take up photography I know I would get tons of business from my special needs friends.

10. One last Random Fact: I will be married for 10 years in August. Wow, can't believe it.

Ready to Throw in the Towel

It seems like the last 10 days have just been full of things not going right in regards to Evan and things that he needs. First last Thursday I thought it was reasonable to expect that I would be able to take my almost 3 1/2 year old into the grocery store for 5 minutes while I picked up his prescription. Well I was wrong, first Evan did not want to hold my hand in the parking lot and when I made him hold it he was mad and threw his train across the parking lot, then when we get into the store to the pharmacy he decides that he is still mad and lays himself out on the floor. I talk to the pharmacist and then take Evan over to check our blood pressure, I am not even able to finish mine before he is off and running to another section of the store and just as I grab him the pharmacist tells me that the Rx is ready. Great, I have Evan hold the bag so he can be my helper, and he does okay until we get to the door and then he decides to throw the bag and that he does not want to hold my hand anymore. I finally get him einto the car and I am so mad because I should be able to take him =into the store for less than 5 minutes.

Then we go to church on Sunday and Evan is in this great group called champions which pairs a special needs child with a coach so that they can be included in the typical sunday school classrooms, so there are specific parking places for the champions parents those were all full, all of the handicapp spots were full and half the cars did not have a placard or license plate. So I had to park far away from where I needed to be. I was so tempted to just turn around and leave but I knew that Evan's aide takes the time to be there for him and I wanted to him to be in his class. Plus, I really enjoy the service, it is a nice time for me to be by myself and listen. Well, I was just so frustrated and I was touched by the message so I just lost it when after service I went and picked Evan up and a friend gave me a hug. I was just saying how tired I was of fighting and being the one to take care of everything to get Evan what he needed and how I was tired of being strong and I was ready for someone to take care of me for a change. Anyway, I recovered and we went on with our day.

So then it began again with the whole fight to get authorization for Evan's orthotics. He got casted 5 weeks ago and we are still trying to get insurance and Alta authorization. Our insurance will cover the majority but we have a copay and deductible to meet. The biller at the orthotic place was supposed to bill medi-cal as well but she did not do that until yesterday when I talked to her. She was trying to get an authorization from Alta for the remaining balance but Alta needed denial letters etc. So I had to talk with Alta and billing at Hangar orthotics, they should have been talking to each other but they both dropped the ball on that. It was so ridiculous that I have been the go between and these two have not been communicating with each other. I was so mad at the fact that I had to fight so much for what Evan needs. He needs orthotics to help him walk better and keep him from toe walking. After several phone calls we got things figured out and we are going to get all of the authorizations, insurance coverage and denials that are needed and then Evan will get recasted so that his AFO's will be made from a cast that is current and not 7 weeks old which would be what would happen if we used the casts that are 5 weeks old. So today I went and took care of getting some things that I needed to get done for this process and hopefuly we will get the other needed things so that Evan can get his new pair of AFO's.

It is a known fact within the special needs community or at least among my friends that more often than not the anger and frustration that come from raising a child with special needs do not always come from the child or their disability but having to jump through hoops and fight to get things that your child needs and deserves. I am so happy to have an agency like Alta to help pay or pay completely for things that our insurance does not but I hate having to jump through hoops at times to get their services. I also hate that rarely do people call you back after the first call and that people drop the ball and do not communicate with who they need to communicate with. I almost always have to make calls and double check that things that a dr. ordered etc are being done. His modified barium swallow is the perfect example, I called the Dr. office to see where we were in the process and she claimed that the referral was faxed over after our appt in February, well it was not recieved by Sutter so she faxed it again on 4/1/08 so that is the date we were put on the waiting list. The office would never have known about this problem if I had nto called to check, same with the orthotics, I had to call to see what the hold up was. This is a constant frustration of mine. It is already hard enough to deal with having to quit my job, take my son to 6 therapies a week, countless dr. appts, be in debt and have no extra money at all and actually be short on money, be told that we make too much to qualify for SSI and that my son is not disabled enough to qualify for In home supportive services. It is times like this that I have the irrational thought of just pretending Evan is typical and stopping all therapy and special education, getting a full time job and putting him in regular daycare and saying screw it all. I of course would never do that it would be such a huge diservice to Evan, but I just wish things could be a little easier especially for something that is so important to him such as orthotics.

Well I will get off my venting now and tell you that Evan can say in his own little way the word hot dog, he has been taking a daily nap for about a week and he also has been starting out in his own bed at night. Also, he does this cute little swing of his right arm when he walks, it is so adorable. I hope to video tape it and post it sometime on here. And I will be a new Auntie any day now and I cannot wait to meet my new little niece.