Thursday, May 3, 2012

Everything IS Going To Be Okay!

Everything is going to be okay! I have to tell myself that a lot lately...especially with what's been going on in the news with the dad that sent his Autistic son to school with a wire. The horrible horrible things the adults said to this boy were completely uncalled for (and he is supposed to be able to look up to them)! Every time I think about him going to school (not preschool but Elementary school and up) I get knots in my stomach! What if someone treats my baby like that? What if they call him a bastard or tell him to shut up? What if he is mistreated everyday and will have no way of letting me know? Then those thoughts turn into what if no one likes him? What if he has no friends? What if the kids treat him the same way? Tonight...those thoughts were settled if only a little bit...

The clan went to Pa's softball game tonight. Just before the game ended we decided to let the three little rascal's that were with us go play on the playground. Matthew was having a blast with all the other kids and so was Kayden. I got a little pain in the heart watching all the kids run and laugh and climb the stairs and go down the slide...then there's my Grant Man...being held by Ma and going down the slide. Was he happy...OF COURSE!!! But it was what happened after this that brought tears to my eyes!

There were several little kids on the playground. They all started asking my mom questions about Grant. Pretty soon they were all wanting to play with him. One little girl (who I found out is 12) just carried Grant around and went down the slide with him. Another little girl who is in Kindergarten helped him go down the slide, too. They were so excited to be playing with Grant. The 12 year old couldn't get over how cute he was. Then she started asking me questions. One question she asked was if he could talk. I explained to her that he is just learning how to say words and he only says a few things. Then this little 12 year old girl said something to me that made my soul smile. Her response to Grant "that's okay, Grant, I understand you." Wow!! I never, NEVER would have thought I would be hearing a young girl say something like that to Grant "that's okay I understand you" and boy did his face light up. To some of you that phrase may not mean a whole lot but when you have a child with special needs that you don't know if anyone other than yourself understands him then it means the world. She told him goodbye and that she would see him next week and they would play some more.

As we walked away I had an overwhelming since of calmness. Sitting here thinking about those questions: what if no one likes him? What if he has no friends? What if the kids treat him the same way? I don't think I will have to worry about that :)

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!!

Wednesday, February 22, 2012

Little Man's Big Day!

Yep it was botox day today :)

Started out Tuesday night and having Matthew spend the night at Ma's house. Since we had to leave the house at 5:30 this morning I figured it would be easier for him to stay. Wasn't sure it was going to work but with some coaxing and distraction from Ma, Grant and I were able to come home without Matthew (which was extremely weird!).

(My happy little man the night before)

So we got home and he got a bath (per request from the hospital) and gave him his night time drink and he was out by 8:30! So this morning came (4:15 came way too soon!!) and we were out the door by 5:40! Once we got to the hospital, Grant Man did SO good!! He didn't cry for anyone. He even let Dr. Gupta mark on him. Look at how big my little man looks!

He did SO great! Even let me lay him on the table and played with Elmo and Cookie :)

He even happily sported his gown :)

Then it was time to go back and it went downhill fast! He was laying on the table and three nurses came in. I knew it was time. I gave him a kiss and told him I loved him. When I pulled back I saw the lip. For those of you that know Grant you know "the lip". It's that pitiful, heartbreaking pouty face right before he lets out the cry. It breaks my heart on a normal day and today it's more like someone ripped my heart out and was stomping on it! But I held it together. I turned around and started packing up Elmo and Cookie. One of the nurses told me he could take that back with him if he wanted. So I tucked it under his little arm. He was still crying. I turned back to the bag and lost it :( Only for a minute but the tears were streaming.

So we waited...all of maybe 3o minutes before our pager went off. We then went in and met with Dr. G. He is amazing! Such a great doctor. In fact, so great that people come from all over the country to get botox done at that hospital and with him (recently one from North Carolina). How lucky is Grant to have such a great doctor on his side? Anyway...I digress :) So Dr. G showed us some x-rays of his back just after they injected the botox and then moments later (see below). Then he talked to us about the muscles and what to expect and all that medical talk after any procedure. But he did it in a way that we understood and didn't talk down on us. He then said that they were taking Grant back to his recovery room and that we would be able to see him in a few minutes. That was followed with a warning that all the nurses and operating room personnel thought he was so cute so to make sure we leave with him :)

(The top image is his back (laying on his stomach). You can see the needles and the botox had just been injected. The bottom image is just two minutes later and look at how fast it spread throughout that muscle. So amazing to me!)

No sooner than we sat back down they were calling us back to see him. As soon as we went through the maze of halls they opened a door and we heard him screaming! He was hysterical! He had just woke up and was really freaked out by everything. I immediately grabbed him and he calmed down! Drank have a small can of apple juice out of a straw! :) We went home and that was that!

At home we played and played until naptime. After naptime we did some running around and played and played some more! I can already tell a slight difference in how loose his ankles are. We are expecting to see small changes starting after a couple of days. The big changes (which comes from injected that lower back muscle) will happen after about 2 weeks. That's the change I can't wait for.

Oh and he ate like a champ today! He did so great with dinner...didn't even spit out (accidently) his mac and cheese like he does! The only food that came out was the pork chops (on purpose) that he decided he didn't want!

I can't tell you how incredibly proud I am of my Grant Man! He continues to amaze me everyday! I know that before too long he is going to be pestering his big brother like little brothers do :) This was just another climb in this journey!

If you made it this far...THANK YOU!! Thank you for sticking with it and thank you for loving my Grant Man enough to read this novel!! :) (and please excuse any typos! I'm one tired momma!)

Thursday, February 9, 2012

Feldenkrais Week 4 :)

So we went again to see Ms. Ruth and Grant Man had another amazing lesson! I'm telling you she gets that boy moving, tuckers him out and makes him hungry :)

He is doing so great. He is pushing up on his forearms when on his tummy and holding it which he's never done. He is also getting his legs going and trying to bring his knees up under him. Our homework is when he does this to help him get his knees up under him and hold his pelvis and butt back so he can support himself on his arms. I've tried doing this before and it seriously takes all my might to hold him down and he would never support himself on his arms. Now it only takes me supporting him just a little and he completely supports himself with his arms almost fully extended! When he gets tired he drops his hands, repositions and pushes back up! I really see him being an ornery little brother by summer! Can't wait :)

You Wanna Botox What?

That's what I found myself saying last March when we took Grant for his botox evaluation. It seemed like the doctor wanted to botox every muscle in Grant Man's little body! Absolutely not was my response and I stuck to my guns! We had just started ABM and it just didn't feel right.

Well now it feels right :) We went this past Monday to do another Botox evaluation. And this time I'm okay with it...actually I'm kind of excited!

Dr. Gupta decided he wants to do the muscle near or right above his shoulder blades which will help with bringing his shoulders back and holding his head straight up, on top and on bottom of his wrist to help with with opening his hands and rotating his wrists, his lower back which will help him learn to use his trunk, the inside and outside of his thighs to help open his legs wider and extend his knees, his calf and Achilles Tendon to help with flexibility of the ankle. Whew...sounds like a lot I know but I think it will be GREAT for him! Between botox, his wonderful therapy he gets now and Feldenkrais I think he will really start doing amazing things!

His botox appointment is on Wednesday, February 22nd at 8:00 am. I have a feeling the next 12 days are going to go by SO slowly!

Tuesday, January 31, 2012

Leg Braces!!

We have waited almost two months for Grant Man's leg braces and today we got them :)

Are these not the cutest little things you've ever seen?

Grant Man isn't sure yet what to think about them. He hasn't figured out that he can bend his knee with them on. Can't wait until his amazing PT comes over tomorrow so she can help us with them :) I'm pretty iffy on them. I guess once I see that he can start using them I will feel better. It's really amazing all the equipment that is out there to help special needs kiddos! I feel truly blessed to have the opportunity to utilize this equipment! Here's a couple more pics of Grant Man (of course more will be coming soon):

It's Bumbo Time!

So another thing I can contribute to Feldenkrais...Bumbo Time!! We had a lesson yesterday (Monday). On Sunday night I pulled out the Bumbo (Like I have done several times over the last almost 2 years) to try to see if Grant might magically enjoy sitting in it. Well low and behold he didn't! Screamed horribly when I put him in it. I was pretty bummed. Well we had Feldenkrais and then last night I decided to try again since he had such a great day. I put him in it and LOOK...

(Sorry so blurry)...yep that's right that's a smile spread across his face!

He had a blast sitting in it! As you can see by the joy on his face!

He loved it SO much it was unbelievable. So while I should have been getting pajama's on and getting the boys in bed...Grant was enjoying Bumbo time for the first time and Matthew was eating dinner :)

Yep you've got's a video of my happy little man!

So we are looking forward to more free hands time while Grant plays in the Bumbo!


So silly me just realized I haven't updated you all since Grant's first visit with Ms. Ruth. He had a visit last Tuesday and it went amazing! We went to her place and I was kind of nervous about how Grant would react but he didn't miss a beat! She again had him sitting, laying, rolling, crawling, playing on his knees. He had a blast and was SO worn out!

Between last Tuesday and this Monday I saw such big changes in Grant! He's becoming more and more flexible with each visit! When he's on his tummy, he would get one arm up and push and that arm would go back down then he would get the other arm up and same thing over and over. The biggest improvement I saw between the last visits was that he was getting both arms up at the same time!! This is huge for my little man so you can imagine my excitement!

See what I mean? He's got both arms up there but not pushing off of both.

We went back to see Ms. Ruth this past Monday and (for lack of better expressions) OMG!! :) He was doing things in the session I've never seen him do before. She had him stretching with no wincing or crying! And when we got him home he started not only getting both his hands up at the same time but he started pushing off both onto his forearms!!

See how now he is pushing up on both forearms as opposed to just the one? AMAZING, right?

Here is video of my amazing man and working on pushing up on his arms and pushing forward (and then playing of course! It's not all work and no play around here) :) enjoy!

So I think it's safe to say that we will definitely be sticking to visiting Ms. Ruth and getting his Feldenkrais method weekly! I don't want to jinx anything but I see a pretty mobile boy by Summer! :)

Finger and Thumb Let's Have Some Fun!

Yep it's Coban (not sure of spelling) time! :) Grant's wonderful OT gave me this great idea of cobaning his fingers so that the only ones he can work on his pincer grasp. He loves it and he's doing so good with it. Here are some photos for you to see how good he's doing...oh and of course a video!

Look at that finger and thumb!

You can tell how hard he is concentrating by the look on his face!

Again with the finger and thumb :)

And of course big brother is always there to help Grant! We cobaned his hands too!

Enjoy the video!

As you can see it's working!

Burr Oaks on a Cold Day!

A couple weeks ago (0f course on one of the coldest days this year) we got the crazy idea to take a trip to Burr Oaks! The boys LOVE seeing all the animals! Grant Man had a blast. So here is a fun little post just to enjoy :)

Grant Man talking to the reptiles!

Looking at the snakes :)

Told you he LOVED it!

Face to face with a salamander

Dad showing Grant man what's in there

Going through the tree tunnel with Grant Man!


My Loves!

Hope you enjoyed!