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.
Friday, December 5, 2008
Thursday, December 4, 2008
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
Please see this link if you would like to see pics-http://justinichfamily.blogspot.com/2007/08/evans-72hr-eeg.html
Tuesday, June 17, 2008
Oh the specialists you will see
Neurologist- that one is a given, he gave us our diagnosis and continues to see Evan for follow up and regarding his sleep issues.
GI- Evan has reflux so we see the GI dr. and he is on reflux meds
Opthamologist- This is mainly for follow up and to keep a check on Evan's vision. So far it is fine.
Pulmonologist- Evan has asthma and is a risk for aspiration which can cause pnuemonia so he see the pulmonologist for these reasons.
Orthopedic- We see Dr. Hart at Shriner's to deal with Evan's spasticity and we do Botox injections and serial casting to manage this.
GI- Evan has reflux so we see the GI dr. and he is on reflux meds
Opthamologist- This is mainly for follow up and to keep a check on Evan's vision. So far it is fine.
Pulmonologist- Evan has asthma and is a risk for aspiration which can cause pnuemonia so he see the pulmonologist for these reasons.
Orthopedic- We see Dr. Hart at Shriner's to deal with Evan's spasticity and we do Botox injections and serial casting to manage this.
Entering the World of Therapy
Evan started physical therapy in August 05 and Occupational therapy in September of 2005, he saw each therapist on an alternating week basis. They both wanted to see him at least once a week but did not have enough room. We saw them at Sutter Memorial hospital, and in physical therapy Evan was working on transitioning from sitting to all fours and almost a year after starting he was sitting independently and transistioning and he began to crawl on all fours at about 14 months, it was so exciting. Evan started in October 06 with CCS and this is where he used his first walker and began to take independent steps at around age 2 1/2.
In OT he was just working on fine motor skills but his left had is so affected that this is something we are still working on.
Speech - Evan started speech at 1year old. He was with the same therapist until he was 3 years old and transistioned to the school district. He will most likely never have a functional speech and we have acquired a Dynavox communication device for him. He is slowly learning to use it. Speech at the school district started at age three and he also had speech with his feeding therapist as well.
Feeding Therapy- Evan had a modified barium swallow and was considered a moderate risk for aspiration so we started feeding therapy and discovered just how far behind he was in oral motor skills. We were lucky enough to have the school district approve feeding therapy as well so Evan has had the most awesome feeding therapist since March of 2006.
Warm Water - We also started warm water therapy in March of 2006 and we had the best therapist for most of our time there. Evan loved warm water therapy and he to this day prefers warm water for swimming instead of just regular temp water.
Music Therapy- We did music therapy for a year and evan liked it but had some issues with the early morning appt.
In the prime of Evan's therapy we had 6 different therapies every week. All of this changed when he transistioned to the school district.
In OT he was just working on fine motor skills but his left had is so affected that this is something we are still working on.
Speech - Evan started speech at 1year old. He was with the same therapist until he was 3 years old and transistioned to the school district. He will most likely never have a functional speech and we have acquired a Dynavox communication device for him. He is slowly learning to use it. Speech at the school district started at age three and he also had speech with his feeding therapist as well.
Feeding Therapy- Evan had a modified barium swallow and was considered a moderate risk for aspiration so we started feeding therapy and discovered just how far behind he was in oral motor skills. We were lucky enough to have the school district approve feeding therapy as well so Evan has had the most awesome feeding therapist since March of 2006.
Warm Water - We also started warm water therapy in March of 2006 and we had the best therapist for most of our time there. Evan loved warm water therapy and he to this day prefers warm water for swimming instead of just regular temp water.
Music Therapy- We did music therapy for a year and evan liked it but had some issues with the early morning appt.
In the prime of Evan's therapy we had 6 different therapies every week. All of this changed when he transistioned to the school district.
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