Monday, March 22, 2010

A parent shared this link, so I shared it with you

A friend that I have that wears hearing aids shared this link. I felt that it was something that would really enlighten everyone on what a hearing loss can sound like. Kristen has a cochlear implant so with that one ear, her right, she hears at a mild hearing loss. With her left ear she wears a hearing aid, and with the hearing aid it brings her up to a moderate loss. She benifits too much with the hearing aid for me to be able to have the left ear implanted, although I'd like too, so we wait until she can tell us what she hears with it. So here's the link, you should check it out. I may help to bring the hearing world into a hearing impaired/deaf world.

Friday, March 19, 2010

A whole new baby

We started Kenny's med's last nite. And I cannot believe that he's a different baby ALREADY!!! Like I don't mean that the spasams have stopped, although I haven't seen any already, but he's HAPPY!! Like a NORMAL baby! It's almost The Screamer is a They did say that sometimes you can start to see results from the med's as soon as 24 hours after first doseing...well, maybe it's my imagination, but I'll take it..:)

Wednesday, March 17, 2010

The Results are in

Kenny has Infantile Spasams. They are essencially seizures. The poor kid. I'm just kind of numb right now with everything and just going day to day. Why is it that everything keeps hitting this house??!!

Tuesday, March 16, 2010

The neorolgist....

they want to see us tomorrow morning at 8am. As a parent of a sick kid at one point, I am fully aware when a dr want's to see you asap, or they call you at home, it's not a good thing. Or it is because the intervention needs to be immediate. So my feeling is that Kenny is having some form of seizure activity and we need to address this immediatly. But of course I'll know more tomorrow!


I feel like this spring break hasn't been much of a break! Well it has been, but I've been busy with appointments now for Kenny! Yesterday was his now we wait to see if ther are any seizure activity's going on. Today was his assessment for the At Home Program to see if he's eligible. So again, now we wait and see. Thurs we have OT and PT for him, as well as his six month shot's and Kristen's Kindergarden shots! Poor And next week Kenny's head U/S! WOW can it be more jam packed. This is all extra ontop of everything else that goes on around here. just when you thought that there was no more hours in the day....we found some!!

It's been a good almost 4 years since our house has just been ours. when you have children with higher needs, your door becomes wide open. You no longer have the same solitude to go home too, because they come to it! We've had PT, OT, SLP, IDP, ABA, heck, I've even had pediatritions grace their presence here at one point or another. When will my home become mine again....I'm not sure. I'm used to it now....the neighbor's must wonder some days what the heck goes on!

Wednesday, March 10, 2010

Busy Busy Busy

It's Spring Break around here, and it never ceases to amaze me that we're still soooo busy! There are just appointments being thrown around left right and center! I don't think that I'd know what to do with myself if I didn't have something going on. I wonder if I will?? You know, stop to smell the roses. My kids are growing up so quickly right before my eyes. I feel like it's a race track and I can't keep up and I may miss something. Joe is just doing some AMAZING things. He's so loving towards his sister's and just loves to please. Kristen is just a spit fire! She looks at you with these eyes, like did I do that??!! Courtney, well that little one is NOT letting the older two get away on She's just keeping up to them as much as her two year old little body can! Kenny....he's not so much a screamer anymore...well he still screams, but we can get him to smile and do HIS giggle! We feel like he's slowly seeing more and more. And then I turn around and do it all again!! I must say....I am so blessed to have such wonderful kids....even through my stress and frustration!

Wednesday, March 3, 2010

I am so proud

I went to the school today to see what Joe's kindergarden class is going to be performing. I was so proud I cried. He has come so far! I can't wait to see him when they do the whole performance at Bell performing arts center.

Tuesday, March 2, 2010

At least he's seeing something

We had the appointment with the Visual Impairment Clinic yesterday. They put Kenny WAY below the chart for sight....but having said that he is seeing something. There is hope at this point that he will makes gains as to what he see's. We just need to give him the opportunities for his brain to see things. So in doing that I have printed off the contrasty types of things that babies thrive on looking at. I'm just happy that I didn't hear that he's seeing NOTHING. I think that after last week that would have really put me over the edge. His sight is at .25 of what the chart that they use, and I can't remember what normal sight for his age was...I do believe that it was around +1....but I could be wrong on that. The dr was so helpful, and supportive and even wants to take a look at Kristen. Just to see how she's doing with her sight. She has a similar injury in her visual portion of her brain as well. She has a Nysagmus as well...and if he can 'classify' her as visually impaired it will just put her at a higher rating in the school system along with her hearing loss. I have come to a big head in the road and journey....these words (diagnosis') are just that, words. I've always known that and said it, but I think that there has become a bigger acceptance on my part that it doesn't define WHO my children are. People constantly say how strong i am, and how great I handle it...but inside I do cry and hurt. But then I look over at the screaming children beside me yelling at eachother, and know it's We have great supports in place and people that truly understand, or take a real hard attempt at trying to understand. And they love all of my kids unconditionally. I think that I'm rambling I'm not sure if this all makes sense, but it's off my brain, and I can now focus on other things.