Academic Achievement award

We are so proud of Gabriel our 7 yr old son, he is in first grade and got an Academic achievement award today at school. His teacher said a little speech about him which basically was that he has had straight A's all year in every subject and he is a great student and a great boy all around. We are so proud of Gabriel.

We are also very proud of Cynthia, she has had really great grades ever since 7th grade and has been able to keep up her grades in high school, she gets mostly A's with a few B's. She is a great girl and never really gives us any trouble. We are proud of her and can't believe she will be a junior, she is going to be graduating from high school before we know it. We just got the letter in the mail, Cynthia passed the California High school exit exam. Woo hoo, I was not really worried about it but it is good to know that this is under her belt now. Next is the SAT's

Fundraising for an Adaptive Bicycle

Here is a picture of the bike that I want to get for Evan. It is the Freedom Concepts discovery 16 bike. We would get ours with the high back seat, rear steering, loop handlebars, chest harness, hand wrap for lefty, pulley system. I really want this bike for Evan so the first thing I am going to do is get an RX for it from the Dr. at Shriner's, then I am going to have Evan's OT do the evaluation form for it, and maybe even write the justification letter for it as well. I have to get this for Evan, I was watching videos of kids with these bikes on the freedom concepts website and these kids just love their bikes and the freedom they feel. And the kids that I saw were of all ranges of abilities, from more severe than Evan to less severe than him. I truly do not understand how this is not an appropriate piece of equipment for him at this time.

Check out the website - www.freedomconcepts.com

We are going to start fundraising for this bike. So if anyone would like to donate to a great cause of getting Evan an adaptive bicycle we and he would greatly appreciate it. I am going to work hard to get Alta or the school district to pay for it but I do not feel that my son should have to wait for these people to realize it would be great for him. I am not going to sit on my tush and wait for them to do it, I am going to fight to get funds to buy this for him. I think this is a piece of equipment that any special needs child that cannot ride a regular bike should have. Ok, off my soapbox now. But seriously the fundraising has begun. Thanks

Bird Nest Update

One of our little bird eggs hatched today, it was the cutest thing. I really hope these little birds survive. I would post a picture but my husband left our camera when he went golfing and we have to go to a friends to pick it up. So hopefully there will be pics soon.

Frustrated

I am very frustrated right now. We had a referral for an evaluation for an adaptive bicycle for Evan. Well the OT who supposedly did the evaluation has said that she does not think this is an appropriate piece of equipment for him at this time. This is so ridiculous. First of all she only saw him for about 30 minutes and that was to eval his current feeding chair, then she called me on the phone and we talked for about 20 minutes regarding the bike but she never did an actual evaluation for the bike. How is she able to determine if it is not an appropriate piece of equipment for him. She has not even seen him on a commmercail bike or an adaptive bike. I just hate how these people think they can play GOD with our children or how they think just because they have a Masters degree that they know what is appropriate for our kids. I know my son and an adaptive bike would be so cool for him to have. I am totally fighting this one. If only I had the $2k to buy the bike myself I would do it in a heartbeat.

My second thing of frustration is being told that working on Evan's hand usage after he got botox is out of the scope of school based therapy. What the heck. I emailed his OT to inform her that he got the Botox so that she could take advantage of the benefits and do some work on his hand, she then forwarded the email to her supervisor who gave me that response. So taking time to work on the fine motor skills of an affected hand with Botox is out of the scope of school based therapy. So I guess they do not want him to use lefty as more than a helper hand that is fisted and tight all the time. I am so glad the school year is almost over and we are going to hopefully going to a new school with hopefully new therapists who care more about the kids.

I have no pics to post because our camera is not in our posession at this time. But check back for some pics of our birds nest and camping trip.

Husband Tag

What is his full name: Rudolph Lawrence Justinich Jr.
How long have you been married: It will be 10 years in August
How did you meet: At our best friend's wedding. My best friend married his best friend in South Lake Tahoe, and that is also where he proposed to me.
Who eats more sweets: We both eat too much sweet stuff.
Who said I love you first: He did......
How old is he: 34
Who is taller: Him- but not by much only 1/4 of an inch
Who is smarter: Depends on what the topic is......
Who does the laundry: Me.. He has to put his own clothes away though. And he will also put on a few washes sometime.
Who pays the bills? Me, I consult him so he knows what's going on.
Who sleeps on the right side of the bed: I do because Evan is up in the middle of the night and usually Rudy is at work at night anyway.
Who mows the lawn: Him, I did mow it the other day because I knew it would be too hot by the t ime he woke up. He had to sleep because he worked the night before.
Who drives: We both do, but he usually does when it is long distances.
Who is more stubborn: I think we both are.
Who kissed who first: He kissed me first.
Who as more siblings: We both have the same, 1 sister and 1 brother, although his sister passed away and his half brother is 6 months older than his daughter.
Who wears the pants: We both wear the pants,
I tag.....anyone that wants to do this:)

Botox

Well Evan is done with Botox and it went well, they used gas to put him out and the whole procedure took about 20 minutes, it was great. It was sad as they rolled him away on the gurney and he was looking at us. This is the first time he was put out after he went away from us. We are already seeing great results only 2 days after. His left foot is a lot flatter and it is so weird to see him standing on his left foot flat, he still seems kind of akward with his gait because I think he is so used to standing on his tip toes. I have not noticed as much in his hand but I can suppinate him better for sure. I am anxious to see how long it will last. We will go next week to do serial casting and hopefully he will have a longer lasting affect with the Botox and serial casting.

Botox Injections Tomorrow 5/20/08

Well, Rudy, Evan and I will be heading to Shriner's early tomorrow morning for Evan to get his botox injections in his left hand. We have to be there at 6:30am(uugh). Evan's procedure is not even scheduled until 8:30am, so the two hours I am sure will be registration and getting ready, talking to the Dr. etc. I am a little nervous as I am everytime he goes under general anesthia which he will have to for this because apparently it is very painful because the needles are smaller and there are more injections. So we will post pictures and hopefully see some great results with this type of therapy.



Here is what I am going to talk with the Dr. about :



What do I need to tell the OT at school on how to work with him after the injections?



Can we do his leg at the same time since his serial casting has worn off months ago? If not when can we schedule Botox for leg and more serial casting?



Can you please write me a RX for physical therapy that I can get using our insurance and not CCS?(I found out that Shriner's will not provide the outpatient therapy-bummer)



What can we hope to expect from this treatment?



What about a hand splint?



So check back tomorrow or in the next few days for an update on how this went.



Off the subject, I am really sad and feel like a horrible parent because Evan has two cavities and will have to be put under to get them filled. We try to brush his teeth 2x a day but there are times I forget, I am really trying to remember to give him the seizure meds 3x a day and in my tiredness from not sleeping well for the last three years I seem to forget things. Seizure meds rank #1, but teeth certainly rank #2.