Thursday, March 22, 2012

It's Official...

That's right...we've joined the handicap sticker club. Not one I'm proud to be in but one I'm proud to be in :) I have to admit this was a heart piercer to look at once I got in the car. It's so crazy how things happen (not sure if those are the words I'm looking for)

Let me explain...I have a kid with a disability. Yes this disability is will never go away. Okay, I'm okay with that...I understand that...most importantly, I accept that. However, when you have a child with a disability, that's not enough. What I mean by this is...I know I have a kid with Cerebral Palsy. I live this life everyday and have for the past two years. I live with the weekly therapy sessions. I live with the doctor's appointments. I've lived with the long distance trips to get therapy that insurance doesn't cover. I've lived with losing our house because of saving to pay for something for him. I live it everyday! So why is there always constant reminders of this? Reminders from everything from the kids I babysit, to my older son who runs and plays, to my nephew who is 9 months younger and can do it all. Reminding looks of pity from strangers in the store, reminders all over my house with special equipment to help him sit, walk, play, use his hands, help him stand. I have constant reminders everyday that my baby boy will never lead a "typical" life. And this handicap sticker hanging from my mirror is just another one of those reminders.

So why is simply living this life everyday not enough to remind me? Why do I have these constant reminders? Does God think I might wake up one morning and forget? Or is it just to remind me of how I was picked to be the loving, nurturing mom to such an amazing little miracle? If that is the case then the reminders aren't all that bad. I am the parent of a child with a disability! :)

You Wanna Do What?

My Grant Man sees a nutritionist once a month. We've been seeing her since last May and she has been amazing! She helped him gain weight by giving me so many great ideas on how to fatten up his food. Before her he went over 6 months without gaining anything. In 6 month after seeing her he gained 2 lbs! That may not seem like much to you but trust me it is :)

Well when she came in December he weighed 18 lbs. I remember specifically because we got an ice cream cake to celebrate him hitting 18 :) But when she came back in January she had him showing as losing...a lot! She had him down to 17lbs 9 oz. As a mom I was immediately concerned for a couple of reasons. Obviously him losing weight is not a good thing. I was concerned about what was going on. But then I was also concerned because he was eating like a champ and outgrowing clothes. So I was super confused about how he could be getting fatter but losing weight. So I went to the trusty hold him and weigh myself then without him. This was the day after that I did this and he weighed 18lbs 4 oz?! What? Right that's what I thought. So I started brainstorming as to how she got that weight. The only thing I can think is either her scale is calibrated wrong or his weight isn't evenly distributed because of how he screams. But I knew I had to do something because she mentioned the word...feeding tube!

That's when I thought "You wanna do what?!" No way was my boy, who loves his food, going to be put on a feeding tube. I was terrified! I'm not one of those parents who would deny my boy what he needs but I am one of those parents who will fight what I feel my child doesn't need. Well she came back in February and showed him losing even more :( I knew at this point there was no way because I had been weighing him weekly. Well after talking to his doctor we decided absolutely NO feeding tube is necessary and there is no need for appetite enhancing drugs either! She said he was progressing which was all we could ask for.

However, this doesn't make me extremely anxious, nervous and stressed when it comes time for his monthly appointment. Luckily right now he's on a huge feed frenzy because we have his appointment on the 30th. He got weighed at his 2 year check up on the 12th and weighed 18lbs 1 oz. When I weighed him last night (after everything he's been eating) he weighed 18.6! I couldn't ask for anything better :)

(I know this post was kind of a ramble but something that's been bothering me. Thanks for sticking with me)

Botox Update

So sorry it's been 4 weeks since last updating! With Grant's birthday and everything else going on the last four weeks just flew by!

I have to admit weeks 1-3 were rough! He lost lots of control he had. He couldn't even sit up to play with toys, he could stand on both legs, he couldn't hold his head up when holding him. But he could spread his legs very wide, rotate his wrists, open his fingers, and stand flat footed. So we took the good with the bad. I will say the bad was very frustrating. He was getting frustrated and upset which made me frustrated and upset. I feel like we took 10 steps back. But within the last week or so his strength is coming back and that's so encouraging because it means that he is strengthening his muscles not using his tone to do things.

He is back to sitting very upright, playing with toys, holding his head up when being carried, standing and bearing weight on both legs again, he's not scissoring (crossing) his legs when walking, he's using his hands like crazy, he able to play on ride-on toys because he can spread his legs comfortably! It's definitely been so great seeing all this happen. We go back April 9th for a follow-up and then just wait until it's time for more. I think we will definitely be doing it again :)

The above picture was just three days after having botox! He had never been able to even get close to stretching his legs out this far!

That's right that's my Grant Man standing flat footed :)

riding the blue dog on his birthday. Look how wide open and relaxed his legs are :)

Happy 2nd Birthday Grant Man!!

That's right! My little man turned 2 this month. So very bittersweet!!!

So we had his party and it was full fun, food, family and friends!! Couldn't have asked for a more beautiful day! Just take a look for yourself :)

My Grant Man and his birthday pancake!

His amazing cake (tasted amazing also) courtesy of Cakes by Linda


Fun Goodie Bags!

Can you tell me how to get?

Pin the nose on Elmo

Oscar's Trash Toss

birthday Boy!!

Some of the Party Guests!

Grant Man found a worm :) He's all boy!

Pinning the nose on Elmo

Blowing out the candle

we LOVE books!!

He had lots of help opening his gifts!

"Come on Mom! Open it"

Playing with Ma

So big!

thank you to all Grant's friends for sharing his special day and making it great :)

My baby boy is getting so big! He is such an inspiration. Two years ago my life was turned upside down by this tiny 5lb 13oz bundle of cuteness. I had no idea what to expect or what path our lives where headed down. I was cautiously optimistic but didn't live in denial! And what my little man has shown me and taught me about life some people will never learn. He has shown me true determination. He never gives up...if he can't accomplish something he keeps trying! He LOVES life!! Which always reminds even on my bad days that life really isn't so bad. So I put a smile on my face and hold my chin high! He has taught me not to pass judgement and not to judge a book by it's cover. I could go on and on. His smile lights up my life, his love fills my heart with warmth! He is my amazing Grant Man! I love you so much buddy!!