I've Been Tagged

Rules...1. List these rules on your blog.
2. Share 7 facts about yourself on your blog.
3. Tag 7 people at the end of your post by leaving their names as well as links to their blogs.
4. Let them know they have been tagged by leaving a comment on their blog.

Facts:

1. I am really excited about our upcoming vacation but I am worried that I won't be able to relax because I will be chasing Evan around the whole time.

2. My hubby and I decided not to have anymore kids. I am a little sad but since watching my niece a few days a week, I know it would be really hard.

3. We will be married 10 years in August, wow that seems like a long time.

4. I will be graduating from University of Phoenix with my Bachelor Degree in September. I got my announcements today and I am hoping to get my cap and gown soon.

5. My kids are the cutest boys in the world

6. I hope to never have to leave my house, unless it is to move into a new house that I have picked out.

7. My daughter Cynthia is going to graduate from highschool in about 2 years. I can't believe it. I met her Dad when she was 3 years old. Time sure flies

I tag whoever wants to do it.

Hippotherapy

Evan started Horseback Riding therapy at Ride to Walk in Lincoln on Friday June 20th. Needless to say he loved it. Evan loves horses.

Here is Evan meeting his horse Rico, all of the horses have been donated and the volunteers are a key part in keeping the program running.

Evan just got on the horse and they are adjusting his footing.


Evan had a huge smile on his face everytime he rode by.


I am really excited to see the benefits from Evan doing this therapy

How about some fun stuff

Gabriel's Last Day of School June 5th 2008

Gabriel and his friends

Gabriel and his cousin Sophia, he is enjoying having her here a few days a week and always wants to hold her and help out.

Cute Sophia, she was getting ready to cry in this pic.

Venting RE: adaptive bike

Here is my vent regarding Evan and the adaptive bicycle saga.....

First let me explain a few things. We live in California and there is an Agency called the Regional Center and they are throughout the state in different counties. This agency pays for therapy and equipment from birth to three and then if your child is deemed disabled enough or has a qualifying condition such as Autism they can stay with the regional center after the age of three. They will then provide necessary equipment and one type of therapy such as Warm Water or Hippotherapy.

I requested an evaluation for Evan to get an adaptive bicycle starting in February, he did not have a physical therapist at the time and so I had to rely on the regional center's OT to come and do the evaluation. She came and did an eval for his feeding chair to see if it was inappropriate for him and if he needed a new one and she was supposed to come out and do an eval for the bike. Well, I had not heard anything and she called me and we talked for about 20 minutes about Evan and the reasons I wanted a bike for him and his abilities.

A few weeks later I get an email from my service coordinator at the regional center saying that the OT has stated in her report that an adaptive bicycle is not appropriate for him at this time. Here is the wording from her report:

1. Tricycle- I am not able to recommend an adaptive tricycle for Evan at this time.I recommend that Evan and his family request that Evan receive more opportunities (or regular) opportunities to ride an adaptive tricycle at school or during adaptive PE. *Justification- Evan is unable propel or steer the tricycle at this time. He is dependent is riding the tricycle. Therefore, at this time: A tricycle is not considered as a therapeutic necessity or benefit.The family would like Evan to participate in a similar activity as his peers: Therefore, this is a request is seen as: a request for increasing recreational and social opportunities.

Evan did not attend a school that had an adaptive bicycle when she made this request. He will be attending a school in the fall that will have bikes there. He will maybe have 20mins a day to play at recess and one adaptive PE session a week in which he can possibly use the bike but this is not the only thing they will be working on. So I emailed our service coordinator again and said that she had told me earlier that someone had returned a bike to them and that Evan could try it out, and that is not what happened and that the OT never even evaluated Evan she just made her decision based on a phone conversation. I got a response saying that the OT had forgotten about the bike at the regional center and could we come and try it out on June 10th. I was so excited hoping that seeing him on the bike would prove to them that Evan would be able to ride it with practice.

You can check out our blog http://justinichfamily.blogspot.com/2008/06/no-adaptive-bike-for-evan.html to see how he looked on the bike and read about how they denied him for the bike again stating that he did not have the concept of how to ride a bike and he was just too young but he had potential. So while there I was so mad that I just had to leave because I did not want to end up crying or yelling at the service coordinator. I later left a voice mail asking if we could perhaps borrow the bike they had so that Evan could get the opportunity to use it and gain the skills that they said he needed in order to be qualified.

This is the response I go from her today after she emailed saying she needed to talk to her supervisor: I¢ve staff your request about borrowing the adaptive bicycle for the summer for Evan with my supervisor. Unfortunately, at this time we will not be able to borrow it to Evan for the summer. This decision was based on the OT assessment report conducted by Loreen Fong.

I know she should have checked her email wording before she sent it.

Here is what I responded with. I tried to sound calm but I was so mad. Thank you for getting back to me. I understand that Loreen Fong evaluated Evan and feels that he is not able to understand the concept of riding a bike, nor is he able to propel it himself. I do not have a copy of her new report so I do not know what else she added or changed. Can you please explain to me how he is supposed to learn the concept or how to ride the bike if he does not have any opportunities to learn. This is how most children get better at things which is with practice. I have tried to provide this opportunity but my resources which are commercial bicycles will no longer work for Evan.

We have tried a commercial tricycle, he is too big for them and does not have good enough trunk control to be able to stay on it for a long period of time. The next step up would be a two wheeler with training wheels, Evan is physically unable to ride this type of bike as there is no support whatsoever not really a way to add the support that he would need. I disagree with Loreen's statement that is a social request and not a theraputic request. Here are some theraputic long term benefits.
These benefits include:Bone Growth (evan's left leg is shorter than his right leg)
Strengthening of anti-gravity muscles
Development of hand/eye coordination
Opportunity for cognitive growth Respiratory activity
Development of Head & Trunk control
Social Acceptance
Improved self-esteem

Evan would get a great theraputic benefit from using his left leg to pedal or even having that motion simulated until he could do it on his own. Especially when his muscles are looser due to Botox, his PT stated that this is the time to work on strengthening. The motion of pedaling is a strengthening exercise.
Additionally, even though Evan does not talk he understands a lot and he knows that he is not able to be with other kids and do things they do, he stares at them through the window or tries to keep up with them on his feet or small tricycle outside, this is harmful to his self esteem and self confidence and emotions, so the bike would also be theraputic in an emotional way as well as a physical way.
Also, you saw how he was able to hold on using his left hand and if it came off he would work to put it right back on the handle, that is a huge thing for him. He has to use a lot of concentration to do that as his hand is so weak.

I have to say that I feel that Alta is doing a huge disservice to my son by not allowing him to at least borrow the bike to try to learn the things he is lacking according the the OT report. I am not trying to get this bike for the fun of it, I would buy it myself if I had the money, I want this to better my son's life in many different ways. That is all I ever want for him to help improve and provide as normal a life as possibe in spite of his disability. If Evan could talk he would tell you that he would love to have a bike to ride.

Perhaps, you can help me figure out how to get Evan the experience of bike riding that he needs in order to qualify for an adaptive bicycle. I am really at my wits end on how to help him w/o having an adaptive bicycle to practice and learn with. I would love to hear your ideas.

I ended the email there. Here are some ideas I have.
I am going to put Evan's name on the Ambucs National Wish List and ask around to UCP and Rotary clubs etc, if they could donate a portion or all of the funds. I have a friend at church who is trying to think of ideas.
But this is totally not the point. I just do not understand why they could not at least let us borrow the bike so that Evan can learn how to ride it. I am so mad and frustrated and this type of thing makes it so hard to deal with having a special needs child. I wish I could just run to Toys R us and buy him a $70 bike that has Diego or Thomas on it because that is what he loves, but I can't. If I had the $600-$2k that these bikes cost I would just buy it myself in a heartbeat.

So Amazing!!!

Here is a good before picture to compare to. This is Evan a little over 1 year ago at our cousin's wedding. That is my older son Gabriel who was the ring bearer and the flower girl dancing. Evan is joining in. Anyway, notice how high on his tip toe he is with the left foot, that is how he was until we did the first round of serial casting, it only lasted a few weeks of him being flat footed. Then we did the botox and he was doing well, and now since the serial casting he is doing even better.

We are done with serial casting for this round. It was a total of two weeks of casting. This round really bothered Evan at night because the were stretching a different muscle. But it is so amazing to see him walking flat footed. His gait is not perfect but he is flat on both feet which I know is great and will help his hip and back alignment in the long run. Here are some videos.

No Adaptive Bike for Evan

So today we went for an adaptive bike eval at Alta with their OT. This is a Rifton and Evan did ok with it,but I know with practice he would do really well. Unfortunatley, the OT does not feel the same way. In her first report she states that his riding in dependent so it is not considered a theraputic necessity or benefit. (bull) And she also states that the request is seen as a request for increasing social and recreational opportunities. They also said that he is too young and does not get the concept of riding the bike. One thing that annoyed me is that they talked about the eval and Evan while were standing there and I was tending to Evan and Gabe, and they talked in hushed tones. Just talk to me like I am an adult and treat me with respect. To say the least it was not a good day.

My argument is that Evan will never be able to get the opportunity to learn to ride the bike if he does not have one to ride. We have tried commercial tricycles and he is too big for them, and the next step would be a bike with training wheels but he does not have enough trunk strength or balance to be on one of those. So how is he supposed to ever improve. I left the office very upset and I then left a message with our service coordinator asking if it was a possibility for Evan to be able to borrow the one they had, that we tried out. This was Tuesday and I did not hear from her yet. I know that Evan would love it and he would get the hang of it after a while. Which is what most kids do. He will be going to a school that has a few of these that he can use while at school, so I think I will just bypass the regional center's OT and have the new PT that we see, write the recommendation after he has been in school and used one on a regular basis.
I am also going to try other options such as getting it donated by UCP, or the Elks or something like. Believe me if I had the money I would just go and buy it myself. I just want to prove them wrong. We know Evan and his potential, he will be riding whatever bike he gets in about 2-3 months after her gets it or maybe even less.

Finally some good news

My hydrangeas came back. I bought these as a Mother's Day gift for myself in 2007, I watered them and planted them in the shade but it looked like they were pretty dead, I almost pulled the bush out. Thankfully, I did not because they are starting to come back. You can see how dead they were. I love hydrangeas and this is about my 4th attempt to keep them alive longer than a few months.


Now for the really good news. Evan is going to start physical therapy again on June 16th, woo hoo. He will start with Children's Therapy Center in Woodland and the great news is that I do not have to drive to Woodland, they actually had an opening for in home therapy. My only worry is that we will need to go to the center to be able to have access to more equipment. But I do not care if I have to drive, I would do anything to get Evan what he needs. My friend's son goes to this therapy center and I have only heard good things about it. I am sure it will be much better than what we currently have. I have been very unhappy with his current therapy center and therapist for a long time and I tried to get the school district to provide PT, but they felt that Adaptive PE would meet Evan's needs. I disagree and even had an eval with a PT who said that she felt Evan should have PT one time a week. I have been trying to figure out how to get PT for Evan some other way for about 6 months. There is a center in Laguna that I ran into some problems with so I decided I should check into the Children's therapy center and when I called today they just happened to have an opening for an in home session in Elk Grove, what a blessing. The only bad part is that we have to use our insurance and there is a $35 copay which comes out to $140 a month, I don't know how we will pay this but I am sure we will figure it out somehow.

Our second piece of good news is that Evan is going to be re-evaluated for the adaptive bicycle, this will happen next Tuesday at Alta Regional Center. There is a bike that another family turned in that he will get a chance to try out. I hope they approve it. But if not it is ok because I know at his new school he can use an adaptive bike and I can revisit this in the future. What happened with this is that the OT did not even evaluate Evan for the bike but based her decision on a conversation with me and evaluating Evan for the feeding chair. She stated in her report that Evan could not steer or propel the bike so therefore it was not a good piece of equipment for him. I agree with her on Evan's abilities but I think the only way he will be able to learn is to have the bike to use. So at least I know that if it is not approved then he can use one at school and we can get our own in the early part of 2009.

We are going to see a new neurologist on July 17th, I have heard good things about him and I hope that he will spend more time with me in appts and explain things a little bit more and answer questions that I might have. I think it is good to always get 2nd opinions. Plus his office takes Medi-cal as a secondary so I won't have to pay copays or anything which is a reason to switch in itself.

It seems like some things are finally going our way. I hope that it continues this way.

Bird Nest Update

Well, it may be hard to tell in this picture but we have three baby birds in our nest. They are so much bigger than when they first hatched. I am so bummed that I missed documenting it with pics but our camera was MIA for a while. Anyway here they are. I see the mama bird with worms in her mouth all the time, she is too quick for me to get a picture of her.

Rudy's Best Friend

Rudy and his friend Joe Guajardo have been friends since they were about 10 years old. They grew up in the same neighborhood. Rudy and I met when Joe married my friend Heidi. Joe joined the military and has been stationed in various places in the US, he has always kept in touch with Rudy. Joe's family has a Guajardo Family and Friends golf tournament every year and Rudy always tries to play in it. He really likes golf. So Joe was in town during the tournament this year. The pic is (from left-right) Rudy, Joe, Uncle Dan, Cousin, Joe Sr.

I think it is so great that Rudy and Joe have maintained their friendship for all this time. I would love if Rudy had a friend in town. He has friends but everyone is so busy it is hard to find time to get together.