Friday, November 26, 2010

It's strange

It's weird. I used to follow all of the CDH blogs and cry when babies earned their wings. I would click and find new families to follow and pray for. But since Kenny's been born, it seems like I feel like my time is just spent elsewhere. I don't like that though. I don't even find myself having time to check the blogs that I follow. I also am a part of so many different 'cliques' of families now. My world wide web of friends on FB seems to be from so many different walks of life now. We are a home with so many different acronyms that sometimes I don't even know what i mean anymore. I have nurses asking me what my education is!! Well it's grade 12. And the rest is self taught because of my kids.

I find it interesting. There is a family that I met at Mingle and Play at the hearing center this summer. Their daughter has hearing loss as well. So we are 'friends' on FB. I had met another family just before Christmas last year on FB. Their son has PVL. That is how I found out that Kenny was probably having infantile spasams...thanks to their video that they posted of their son. Then there is another family that I met on FB and their child has CDH and hearing loss. And because of all of these issues I have them as friends on FB. WELL they all live in Prince George and know eachother as well. I just feel like small world! And really, I am a part of too many communities!

Saturday, November 20, 2010

Poor ol' St. Nick

So I took the kids to get their annual Santa pic done...oh poor Santa. Oh well this is what it is...and we love it!!

The kids an update...since I'm so awful at updating lately. Busy busy busy!

Joe: He is finally recogizing his sight words. It's been a long time coming. Because of his ASD it's been hard for him to get the 'academics' side of things. But socially he does great. So we work at it a day at a time. And he is soooo proud of himself for knowing how to read now!

Kristen: Kristen was seen by the visual impairment clinic a week ago. Her vision is at 20/50. Not quite high enough for a visual impairment clasification. She has also been eating. And not just eating!! But eating everything. When you have fought with a kid with feeding issues to see them eat salad, peanut M&M's, cashew's, subway, pizza....well everything. It is so amazing. The kid can pack back a whole can of ravioli to herself. She's still quite little though, but catching up. She is also telling us when she has to poo! And that's amazing. We've gone 8 mths with the kid letting it go in her panties! Geeze! But we're there. I watch her now, and I don't even recognize my own child. I sometimes wonder when I'll forget who she was, and who she has become now. Is it normal for CDH to scar us like this? I hope that I can move forward and forget the what's and really enjoy the now's!

Courtney: She is loving pre-school! She tells me everytime when she goes what she had for snack. I ask everytime, "what did you do today?" And everytime I get the snack run down!!

Kenny: He saw visual impairment as well. His vision has gone from 20/2000 all the way to 20/360!! He said it's because partially the infanitile spasams are under control. We are still on the four month ween down process. The reason that we do not want to stay on the med's too long is that they can cause retinal damage. I was told that most seizure med's have a side effect that can cause vision problems. So as long as he does well we're clear for now. And hopefully they don't change to another type of seizure. We are also still seeing Bio-chemical Disease control. They are still investigating whether or not there is something metabolic/genitic going on with Kenny.

I'm hopeing to have the pediatrition send us all for genetic counselling. I think that there has got to be some reason that we have been so lucky to become a part of so many cliques in the world of 'special'. It doesn't change anything, but it may be nice for the kids to know for when they are older. What they do with the information can be up to them.