Slow!!!! Down!!!!

A blog to follow

This blog is of a 23 year old man, who has PDD-NOS, and is giving insight into what he feels and see's. So very interesting, and nice to have a voice as to what we may be dealing with with Joe. I thank him for allowing me to share!

http://voicefromthespectrumop.blogspot.com/

Water proof hearing aids.

http://talkingtwentyfourseven.blogspot.com/2009/03/water-aids.html

this person has allowed me to share this post with you. I felt that it was a nice way to let people see this too!

http://talkingtwentyfourseven.blogspot.com/2010/06/prepping-for-water-fun.html

This one was for short tuerm spraying!

Thanks so much for letting me share!

Neonatology followup

Kenny had a Neonatology Follow-up Clinic on Tuesday. The PT felt bad bringing us in for the visit. She knows that we are well supported in the community. Of course they saw lots of change in him and were happy. It's slow for us to watch daily though. But the last time they saw him, he was only about a month post-op for the hydrocephalus. So of course there were tonnes of change since then. They have classified him as a level 4 maybe 5 on the CP scale. There are only 5 levels, one being maybe walks with a limp. I said, that's nice, no one will be able to predict his future and every baby has a different early intervention stage, and really since he has only been without brain pressure for 8/9 months, that took him right to almost a newborn stage again, he is doing well. Now don't think that I'm burying my head in the sand in denial. I do believe that Kenny will need a wheel chair. I do believe that he will have some mobility. How much, that I don't know. But I like to think postitive. I do know the reality too. But it doesn't change who he is.

The pediatrician there has put in a referal for full genetic counselling and work up for the whole family. It's just so curious how we have won the lotto on our kids, and why. Is there a genetic componant? Who know's? Again, doesn't change anything or anyone, but will just give us more information.

Sand....yep!

I think that we have officially hit all of the tactile issues with Kristen! She has been through all of it! I think it has to do with her vision as well. So we started with cement, grass, gravel, bark mulch, and now we have achieved sand. If you saw her last year, taking her to the beach...yikes...it was like putting a cat in a bag! She would scream and dig her heels in and refuse to go! I'd pick her up and just sit her on a chair beside me. Well we went camping at Camperland in Bridal Falls last weekend. And she walked on the sand on the first day. Shoes on...but did it. No screaming, and on her own free will. The next day it was shoes with no socks and dumping the shoes every 5 minutes. Then out of no where...shoes off...thrown to the side and walking! Barefoot! HUH??!! And then the kicker, she started kicking her toes in the sand! How far she has come!

BioChemical Says....

We met with the Dr yesterday. She said it could be another 4 weeks for the muscle results to come back. They have basically ruled out almost every type of metabolic disorder that we can at this point. Our blood work showed that Gary had the same broken chromosome as Kenny, but because Gary doesn't have the same things wrong with him, it can't be genetic to that specific gene. At the end of all of this we may find that we won't find anything. But at least we have investigated. And I have exhausted all options. We will still do a genetic testing on the family after this is all complete. Just to see if there is a link between the kids and all that is challenged with them. Not that it changes anything, but it is just information. Or it may change course of treatment. I feel like I'm just a medical journal here sometimes. People's eyes start to glaze over when I have gone through our list, and the medical terms. But I'm glad to know that at least I can educate myself on my kids to the extent that I have.

Walk Walk Walk

Our family will be participating in the Walk for Bright Futures. These funds are used for both BC Family Hearing Resource Center, and Surrey Early Speech and Language Program. We have used both of these wonderful services and I am pationate about fundraising for them. To be able to support an organization that is so family based and supportive, is such a blessing. Please, if you can pledge us as we walk 4.1kms. Help to get the funds to bring down the wait list for the SESLP. They service the hearing children with speech delays. Our wait time for Joe was over 18mths. With more funds, we potencially can bring down these waits, as we all know early intervention is of the utmost importance!! And we have had the honour of being the poster family this year!! The poster has my husband and my second daughter on it, and the pledge brochure has Gary pushing Courtney and Kristen in the stroller and Joe on his bike! So cool!!
Thanks so much for your support!

http://www.gifttool.com/athon/MyFundraisingPage?ID=1761&AID=1487&PID=199183