Update on Evan 10-07

Well, Evan had his IEP on Friday October 19, 2007 and it went a lot better than I was expecting. Of course once he starts school we will see how it goes. Anyway, he will be starting school on October 30th at a special education preschool that is a communication based program. His class will have no more than 12 kids in attendance. He will get group speech therapy and OT, as well as individualized services as well. He is going to get a adaptive PE evaluation which hopefully, they will recommend that he still gets Physical therapy as well. Another big concern is feeding therapy. I am hopeful that the speech therapist knows enough to work on that but if not then we can contract out with our past feeding therapist. Basically it is a wait and see game right now, I have to wait and see how things go at the school and with the therapists and then if it is not to my liking and Evan's benefit then I will have to do what I can do to get it changed. I will post pics of Evan's first day of school soon. I am so excited for him to start school I think he will do very well.

Evan's 3rd Birthday 10-2007

We celebrated Evan's 3rd birthday with a Thomas the Tank Engine party. We played pin the #1 on Thomas and had a pinata. Here is the cutest picture of Evan blowing out his candles. His low muscle tone in his mouth make it hard for him to make the proper formation to blow so he closes his eyes and blows through his nose. It is so cute.


Evan loves this horse he got from Aunt Donna


Hitting the Pinata


Evan and Mia on his new Thomas couch

Evan loves the playhouse

Transition Meeting 9-2007

We finally have a date for Evan's transistion meeting, Thursday September 27, 2007. I am happy to finally have this happen. Those of you outside of this special needs world may not know what this is so I will explain how the system works.
Special needs children are serviced by the Sacramento County office of Education Infant development program from birth to age three. After three everything is transferred to the school district. So first you have a transistion meeting to talk about what will happen with therapy, preschool etc. once the child turns three. The next and most important meeting is the IEP(individual education program) which is where everything is written down and the parents and school district agree to and sign. (and hopefully the district follows through).
Evan is going to be enrolled in a special ed communication based preschool which is what he needs. All of these meetings need to be done by the time the child is 3yrs old. Evan will be 3 in 5 weeks so I am anxious to get everything in order, so he can start preschool.
I will keep you posted as to how these meetings go.

Liberty Swing August 2007

Evan loves being able to swing

check out that smile

Today I took Evan to Kloss park to try out the new Wheelchair swing which they call The Liberty Swing. I had to go to the community to get a key which unlocks the seat belt and the ramp that holds the swing stationary. It was interesting because everyone at the park was certainly curious about what we were doing. But Evan's smile says it all. And I would ask him "Evan do you want down or do you want more and he would always sign more. He loved it and I loved that my son was able to experience swinging. We have tried the baby swings but Evan is just too big and last time it took two people to get him out in addition to taking his orthotics and shoes off. I tried to push him on the regular swing but he just cannot hold on with two hands and almost fell off. So I am really glad that we can take advantage of this option. There is not doubt that I will be sharing this with as many other special needs families that I can. I was in tears watching Evan smile and laugh as he swung on the swing. It was the best part of the day.
Notice that he has a grip on his train, he had that all day. But check out that smile.

New AFO's August 07

Check out the fancy Answer 2 shoes


Horses on the straps(of course)


All together now


Evan is checking out his new shoes.


Look at me sporting my new shoes.

Evan got a new pair of AFO's today. We were really excited about this because his last pair were getting way too small for him and had been causing bruising. Also this new pair has horses on the straps so Evan is really excited about that.

So for Evan's first pair of orthotics he had to wear a size 12.5XW shoe because they are so bulky and had the slip guard and padding on them since he was not really walking when we first got them casted. His second pair were a lot less bulky and he was able to wear a size 11.5XW to start with but he was wearing them with a 12XW since his feet had grown and the 11.5 XW were looking very worn out. (i was excited that he actually wore out a pair of shoes). So I figured either the 12 or 12.5XW should fit with the new orthotics. Well they did not so I was not a little worried since there was really not money in the budget to buy a new pair of shoes until next friday.Well, God was certainly blessing us today, because after doing the final adjustments the orthotist walks in with 3 boxes of shoes and not just any shoes these specific types of shoes that are made for orthotics called Answer 2 and he says that he is now giving away a pair of shoes with every pair of new orthotics and if we wanted additional pairs they are $35. Rudy and I were so thrilled the answer to our problem was solved. We are so blessed. So needless to say we will be going to Hangar orthotics for as long as we can.I also have to give thanks that we have insurance, and medi-cal and also the Alta California regional center to cover the cost of these orthotics because I signed the bill today which stated the cost as being $1300. And I know of other states where there is not this type of coverage. So in spite of all of the not so fun stuff we get to endure on this journey with Evan, there are great moments as well and today was one of them.

Dynavox Trials August 2007

Evan has done very well in his development but speech is a big area where he is very behind, we have been working on signing but their is frustration with both Rudy and I as parents and Evan as the child who cannot get his needs or wants across to us. We have decided to get a DynaVox communication device for Evan, this is basically a personal computer for him that has a program for communication, it has pictures and scenes that he can choose from. He has done a great job in learning to choose and navigate up to 2 screens. Hopefully we will get Evan's device sometime in September so he will have a chance to work with it before he starts preschool in November. These pictures are of Evan and his speech therapist Jane and the DynaVox rep Jamie.

72hr EEG March 2007

Evan was at Sutter Memorial in March 2007 to undergo a 72 hr EEG which is a test that measures brain waves. We did this test to see if Evan has seizures at night that are waking him. For those of you who do not know Evan does not sleep through the night and often wakes up screaming at night. The EEG started around 12noon on Wednesday afternoon and ended on Friday evening. The neurologist said that Evan does have seizure activity but is not have full blown seizures at this time. So we are just going to continue giving Evan medicine that helps him sleep and hope that things will improve as his sleep system matures.

Please see this link if you would like to see pics-http://justinichfamily.blogspot.com/2007/08/evans-72hr-eeg.html