Milestones to Achieve

Like I said in a previous post, Crew learned to sit up in bed. Thanks for the many comments, cheers, praise, and rejoicing with us in this accomplishment! Twenty-Six comments is an all time high for me and it does help knowing we have our own little cheering squad.

As anticipated, his new skill has led to another.

This is good... very very good! Unfortunately, we aren't getting a whole lot of sleep around here and nap times are far and few between.

* Note: Positions pictured are exactly as occurred but just to save my pride- No, I don't dress my child in the same outfit everyday and he doesn't wear jeans to bed for the night.

On another note, today I went with Crew and his Preschool class on a little field trip to a local "Hobby Farm". I volunteered to bring his wheelchair as they would be walking a few blocks. I anticipated having a wonderful time with my son. There would be chickens to see, horses, ostriches, emu's, tortoises, turtles. I even stopped to purchase batteries for my camera for the great event. What I didn't anticipate was the drama my little one would put on "just because mom was there". You know the one, "Let me show you all how I've got my mom wrapped around my little finger". So embarrassing! I even told the teacher that I wish I hadn't gone because I know he is fine without me. In his little class there is an adorable little girl who also has CP. I met McKenna at a GYM class over two years ago before Crew could even crawl. McKenna, a 1 lb preemie was then learning to crawl and pull-to-stand. Today I saw her RUN without the use of a walker or DAFO's for that matter. Part of me was thrilled to see her progress and her cuteness. McKenna is an example of all that can be achieved. But then... it was just a LITTLE disheartening to think of how far we still have to go.

Yes, discouragement is a part of our world but I do try not to let it take over. In your everyday lives, do you suffer from discouragement, self-criticism, or the awful trait of comparing yourself to others? Sometimes it can be so debilitating! I really detest the feelings of discouragement.

How thankful I am today to come home and read this post by one of my favorite bloggers. I agree wholeheartedly with Lori that each one of us is blessed with different talents, experiences, opportunities. We cannot compare what we are going through with that which we "see" of others. I don't think we can ever guess what challenges another might face or experience. Lori, also talks about BALANCE. This is something I am getting better at. There was a time in my life as a mother where I DID NOT invest energy and time for me. How invigorating it is to finally have something that I enjoy (exercise)! I will keep reminding myself that its okay to indulge in this passion without guilt and it will make me a better wife/mother/daughter/sister/friend. Yes, it's okay!

IEP Goals and Services

Thanks for your support on our behalf. This years IEP went quite smoothly compared to last years. I didn't even have to whip out the Special Education Golden Rules handbook:) I really did feel like all parties involved had Crew's best interest in mind and it didn't hurt that little Crew had 12 months to capture the hearts of so many.

The majority of last years goals were not achieved but some of them were. We are making progress... it's just a little slow. Last year Crew could walk short distances in his walker with the use of forearm supports and a sling seat. Currently, Crew walks using regular handholds without the sling for support. It was reported that Crew can now walk 250 feet. Yippee!!! It is so amazing that he has made this progress considering we still have not achieved a rolling goal. What is that all about?

Last year Crew started preschool with a vocabulary of about 12 words (signs included). Now, we are up to....

DRUM ROLL.....

35 words!!!

I had no idea:) Our goal for the next year is to double that and to attain a MLU (mean length of utterance) of 2+ words. It was explained to me that children usually do not combine words until they have a vocabulary base of at least 50 words.

We added vision and hearing support to the IEP while maintaining services in PT, OT, ST, and "Motor Services", with an additional goal in the area of Social Interaction.

I also changed the days of preschool attended from 4 days a week to 3. I just felt strongly that we needed to free up his schedule some so we could add private speech therapy to the mix:) So, I am looking forward to having that additional time that I can spend one-on-one with Crew. He is just growing up way to fast!

Social Imitation

We had our annual family circus last sunday. Getting a good Christmas shot is always interesting. I think the big boys were trying too hard and Crew is never looking in the right direction. In an effort to break things up and kinda shake it off, I suggested everybody "cough in their sleeves". I don't know why.... I guess its funny to me since Crew recently started imitating behavior. He started the cough in your sleeve thing after seeing his therapist do it. He also likes to pretend to scratch his nose.

Tonight before our pre-bedtime "shooting hoops" ritual, I could tell Crew wanted to play ball so I signed "ball" but didn't say anything (usually I combine sign and speech) and immediately Crew turned his head toward the toybox and reached for the ball. Okay, its simple proof that he totally "gets it"!

And "NO" we still don't have a Christmas card picture.

Cause for Celebration

I am crying tears of joy here for yet another milestone achieved. In my previous post I talked about our efforts to motivate Crew to roll which is one step in transitioning from laying on his back to a crawling position.

Today, I layed him down on the floor.... on his back with his toys and left the room to do my online bill pay.

A few minutes later I could hear him dragging his toys across the wood flooring which was strange because I layed him down on the carpet. Thinking maybe he had scooted across the room on his back I entered the room and was shocked to see him on all fours crawling about.

I started laughing, cheering and crying. "Look at you, look at how BIG YOU ARE!" I exclaimed using sign language for emphasis. Crew starts laughing... victory written across his face. I pick him up and we hug.

Where's the icecream now!

A Good Ending to a Hard Hard Day

I can't really go into the details but its been a really hard day. Crew had a PT appointment today with Shaun. When we first got there, I pointed out that Crew is acting different since we started him on the Topamax. He acts sedated! Big surprise. I hate it. It makes me feel bad and worry. Shaun noticed a big difference right away. Last time we went Crew was running around in his walker, chasing a soccer ball, laughing, smiling, squealing. Today, Crew was only with us part of the time. He would chase after the ball, then stop and slump down in his seat and stare off into space. After 10 seconds or so, he would kinda stand up and go after the ball again. Its hard to explain but he is definately showing signs of those horrible no good side effects.

Since Crew was feeling really calm we decided to work on raising up on his knees from a kneeling position. Shaun placed bowling pins up on a bench. Crew was required to push through his glutes and legs to raise himself up high to reach the pins and knock them down. After working on this for a while he was making amazing progress. Shaun feels like Crew could get this down within the next month as long as we work on it daily.

Also, Shaun measured Crews range of motion in his legs and noted that his left leg has more spasticity than his right. That is very puzzling considering that his right arm has more spasticity than his left. One would think that one side of his body or the other would be more involved, but that doesn't seem to be the case. Shaun said he has never seen anything like that before and "it doesn't make sense". Shaun also said that Crew isn't like any other patient he has had before. Trying to explain himself, he said that usually when he gets a new patient he can compare them to someone else he's worked with in the past. But Crew is different. His situation different... in a good way but unusual. Crew can "Cruise" in his walker but still has not learned how to roll over. (just an example). Shaun felt that Crew is a child that will continually make progress over the years of therapy and that often times he works with kids who make very little progress.

Tonight. ... a huge thing happened at our house. Did I mention HUGE!

CREW CRAWLED!

It was amazing! We were all so happy. He actually moved himself.... and with no help from me... ZERO, NATTA, NOTHING. He did it all by himself! Those of you who have a child with special needs can understand this huge accomplishment. And for those of you who don't.... well... Crew is 32 months old! We've been waiting for this for a long long time.

We're proud of you Crew!

The Reverse Walker

After months and months of hard work, lots of therapy, practice, practice, practice, stretching and PATIENCE Crew is taking some steps on his own. We are so proud of him. As you can see from the big smile on his face that he is proud of himself too! He teaches us so much. Crew is a lot of fun! About a week ago, I took him outside with his walker. His brothers and neighbor friends were cruisin' around on their scooters. He was so motivated and started cruisin along with his walker. He was able to take 8 or 9 steps on his own before getting off balance. I hold onto his back belt loop and walk along with him. Throughout this whole time Crew had a giant smile on his face. The kids in the neighborhood are so good with him. They would come up to him and give him words of encouragement. He understands so much and it helps him when they do this.

There a 2 neighbor friends about a year older than Crew. They are so cute with him. They come over and "help" take care of Crew. They give him toys to play with and push him in his little car. When he is in his stander they stand there and play with whatever he has on his tray. It is adorable. They are just toddlers themselves and come over to say, "Hi (T)rew" which is so cute because they can't make the "K" sound!

Recently, I have been leaving Crew in the nursery. Finally, they have enough helpers in there that I feel like I can leave. He has been doing so good and we didn't even have any separation issues. We take his little wooden Rifton chair. His nursery buddies are good about keeping his tray stocked with toys and stuff. During bubbles time the kids in there run around like crazy maniacs popping the bubbles and stomping on them. They reach out and try to catch them with their hands. Well, Crew just sticks out his tongue and tries to catch them that way. Yes, as you can guess the other kiddos in there have decided that this is the cool thing to do. So funny!

Developmental Milestone

The coolest thing happened- we have reached a new milestone with Crew! The other day S & H got down a box of little matchbox cars. They played with them for several hours. Later, I sat Crew in the big recliner chair with the box of cars next to him. He played with them but not the way you would expect. He just kind of stirs them up, picks each one up then drops it, looks at another- throws it, takes them all out of the box then puts them back in, out and in. Well, after quite some time I think it's time for something different. I pick Crew up and he suddenly starts screaming, arches his back, cries louder. He's throwing a fit, a 2-year old temper tantrum. I love it! I am laughing because it is so age typical. I love it when something like this happens. It makes me feel so happy knowing that he has hit this developmental milestone. So.... I test it out again today. I put him in the chair, he plays with the cars. After about an hour I pick him up and what do you know.... he freaks out again. LOL. I put him back in chair- he stops crying. I talk to sister on phone for 45 minutes while he plays happily. I CELEBRATE! OPEN A DIET COKE AND KICK UP MY FEET. Little Crew has taught me so much and celebrating the little things in life is one of them!

This little man is so much fun. His personality is so happy, curious, and fun. We went to some friends home for a BBQ yesterday. They have 2 dogs. A big dog and a little dog. Sorry, that's all I know about dogs. Anyway, he is just loving these dogs. He watches everything they do and giggles . Crew wants to be mobile and is working so hard. He is walking back and forth (with me holding his hands) chasing the dogs. He was constantly on the move the whole time we were there. He even kissed the big dog right on the mouth. I couldn't believe it! Where did he learn this. We don't have any pets! He definately has a love for animals. Hmmmmmmm...... I wonder where he got that from?