My experience of tragedy, trials, and triumphs!
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Saturday, May 14, 2011

Making Progress

Cameron has been making a lot of progress lately. He is starting to repeat a lot more using the last word someone says to him. Or attempting to at least. Sometimes he gets the first letter right or the last letter. He has more words on his own now too. Most of the words he says on his own has started by learning and using the sign first. I am so glad we chose to push the sign like we have. He loves to watch his signing time videos. He is much more social in the classroom as well.
He qualified for the special ed program through the school district recently. When he turns 3 he will start going to their preschool. We had his IEP this week and I am impressed with the people who will be working with him. He is assigned a nurse because of the medical issues that come with PVNH. She had done a lot of research on it and has it all down in his file. The teacher was nice and so was the speech therapist. I think it will be a very good thing for Cameron. He will start school in August. They even have a bus that pick him up at our house and bring him home. Cute, sad, and scary all at the same time. I think will use the bus occasionally but not regularly. I found a speech therapist that will start coming privately after he turns 3. That is when his services through Early Intervention will stop.
I spoke at a conference in front of 500 speech therapists from around the state in March. They had a specialist come and he interviewed me for 2 hours in front of them about Cameron and our families issues. It was a little scary but went really well. I think it helped open doors for Cameron though, so it was well worth it. Now the top people know me and Cam and that is a good thing.
The Hanen Program is ending this month. I have learned a lot and Cam has improved. I feel like blending the ideas from the Hanen Program and the typical speech therapy approach is exactly what will help Cameron break his silence. Along with the sign language! It is also how I found our new private speech therapist, so it has been well worth the extra time.
Cam has started communicating and telling stories through charades. It is so dang cute. He acts out things he has seen or what is going on. We went to the zoo and he imitated all the animals trying to express what he was seeing. I love it!
We are currently trying to find a new neurologist. I would like to find someone that has dealt with PVNH before. We found a facebook page that has other families suffering with PVNH. It has been very helpful and is where we have had the most success learning more about this rare condition. I haven't found a doctor yet that has ever even heard of it. The more I learn the more I realize that speaking might not be Cameron's only problem. There are a lot of physical problems, health issues, and learning disabilities that may come up. He is showing signs of a few of the problems now. My hope is that he won't have to deal with many of them but I also want to be prepared and know what to look for if they do come up.
Cam is still the cutest, bright eyed little boy ever and I am so lucky to have him as my son. He is happy and healthy and that is the most important thing! I am thankful to have such a great support system around me to help with everything. My family is all trying to learn sign language. Curtis has been a great support and help. My sister has babysat a ton of times while I am trying to go to classes and meetings. I have a great team to help Cam grow and progress. I am grateful for all of it!
mom dad papa mama, yeah, no, apple, josh-for all brothers, help-sounds like up, up, truck, in, out, hi, bye, hide, me/mine, down-with sign, milk-with sign, play-with sign, more-with sign, baby-with sign, choo-choo-with sign for train, blue-with sign, ball-with sign, eat-with sign

Finish, eat/food, drink, cereal, coat, cold, shoes, socks, blue, red, green, yellow, train, boat, airplane, phone, cry/sad, more, milk, cracker, water, swim, ocean, frog, fish, horse, cat, dog, work, baseball, ball, bath, wash hands,
baby, signing, time, friend, grandma/grandpa, flower, me, go, car, play/playground

1 comment:

  1. Jules this is awesome! I know how heart breaing it is to watch rial after trial hit your child. I would always think okay this is it what else could she possibly have. then BAM another surgery, another concern, it's never ending. Butthe greatest moments are just like with Cam, it's amazing how their problems are mre concerning for us than they are for the child. They are so strong and resilient and watched over by our heavenly father.