Crutches

Somebody sure is having fun!

Just a quick update

First of all, I want to say "thanks" to my readers (all 5 of you) for your concern, thoughts and prayers on behalf of Crew. Who would've known it would be such a rough year yet we are constantly blessed having Crew in our lives.

I'm going to try and address some of the current happenings with Crew.

Powerchair: The powerchair that was donated to us back in December... then totalled by the airline is now being fixed. The airline paid out for damages but we found out our cost to adapt the chair for Crew was going to be $1600.00. This is the cost of a joystick and a seat cushion. The child who had the chair before us didn't use a joystick. He drove it with a headpiece and the seat is too large for Crew. Consequently, we decided it might be in our best interest to purchase the demo chair instead. The demo chair fits Crew perfectly and since that particular chair is being discontinued we could get it for a good price. Now, we are going through the grueling process of getting insurance to purchase the chair.

Preschool: The move to the deaf school has been good for Crew. His sign language has picked up and he is making progress. The hours are long and that has been a legitimate concern. He is gone all day and when he comes home he is exhausted. It's all I can do to keep him happy until bedtime. On the other hand, the school change has been tough because we don't have as much time with him to work on PT.

Mobility: His hamstrings are very very tight and I'm having quite a time finding time to stretch him. We realized the other day that he isn't crawling anymore. He can still do it if you coax him but instead of roaming the house like he use to, he just sits there and cries until you pick him up. I really don't know if his wheelchair injury is keeping him from moving around or if its just the tight hamstrings. At our last botox appt., we had injections in his gastrocs but not his hamstrings. I think that might have been a mistake.

Social: The last few days have been a pick-me-up as I've seen his mood improve immensely. Crew has been so snuggly and showers us with hugs and kisses constantly. I'm so thankful for this! Outside of family, Crew's social life consists of adults... his PT, his teacher, my friends. It pains me knowing the other neighborhood children are participating in playdates and he is obviously excluded. Crew doesn't even respond when they say "hello" so naturally his circle of friends is basically non-existent. The twins (2-years old) are so sweet to him... I just wish we could develop some basic social skills.

Health: We haven't seen any seizures for two weeks now. Crew is rebuilding his strength since his injury and I hope to see more walking in the future. I am diligently trying to get the constipation under control. It's been really bad and we are using Miralax, Ducolax, Senekot, and enema's. I feel so bad. His eating habits are horrible. He lives off of oatmeal, potatoes, yogurt, pancakes, and eggs. He won't drink juice and fruits/veggies are out of the question with the exception of some occasional applesauce. Most of his food aversions have to do with sensory issues. He is so grossed out by the texture of foods. I'm very worried about his eating. It's frustrating and stressful. It takes an enormous amount of time to feed him and cannot be accomplished without games and distractions. Getting his food and meds down him before the bus comes has been quite the task!

Keep us in your prayers. Love you all!

The GOOD and then some of the OTHER.

Crew's wheelchair is here all the way from Texas. Our PT flew to Texas and brought it back with her on the plane. I am constantly amazed at how often we are blessed with people in our lives who go out of their way to help us. This PT doesn't even work with Crew anymore since he graduated from the 0 - 3 program. Two years later she is still watching out for him.

Let me just start by saying the chair was in good condition before it was turned over to American Airlines. Several phone calls were made to AA prior to this trip to determine the best way to bring this power wheelchair home via plane.

To make a long story short, the airline busted it up pretty good. The base is cracked and broken. The headrest, footrest, and armrests are all bent. A complaint was filed to American Airlines so hopefully the insurance coverage for 15K will cover the damages. What a mess! She said the chair came out of the baggage shoot. Uh hello, its a 200 pound chair. What a bunch of idiots!

Crew is excited! When he saw the chair sitting in the garage this afternoon he threw a fit because he couldn't drive it. Fortunately we still have the demo chair here and he was able to "Crewz" around in it for awhile.

I have contacted the Permobil rep through email already. Hopefully he will be able to stop by soon and write up a bill to submit to AA.

And since I don't have a current picture of Crew with his therapist, I am posting one from 2006.

A Generous Donation

Our battles to get insurance to pay for a power chair have been significant! Its amazing how the loaner chair has brightened our little Crew. We have both primary and secondary insurance. You would think it wouldn't be so hard... but that is Utah for you!!!

Last week I received an unexpected phone call...

Another little boy, JJ, who also has CP and is older than Crew has graduated from his little Koala chair to a newer one. JJ's mom wants to GIVE us his Koala chair!!! I am so touched, and grateful, happy, relieved!

JJ lives in Texas. We are in Utah!

Now I am on a mission to figure out how to get the chair shipped here in one piece. This will be much easier than dealing with insurance, I hope! We are so blessed!

Capture The Moment

It's been a month since Crew's surgeries and I can honestly say we have our silly little boy back! We have been enjoying his smiles and giggles and just simply "living in the moment" with him. I feel blessed to have him in my life because he teaches me so much everyday.

The afternoon before his surgery, his Big Boy Tricycle arrived! Yeah! I love it that Crew has a chance to just be a kid and I've realized that "the bike" has become his favorite activity.

Crew started preschool a few weeks ago. The communication with his new teacher is lacking so far but hope to improve on that soon. We did not receive his back-and-forth book the last two days so I have no idea how he is doing. I did write her a note last week asking how it was going and she stated that because they are still trying to figure out which chair to use and because he "eats slow" and gets pulled out for OT he hasn't had much opportunity to interact with the other children. Okay, I am trying to be patient here but isn't that what preschool is all about? I don't want to end this post on a negative note... that is not my intention. I'm sure the teacher has a lot to deal with these first few weeks of school so I am giving her the benefit of the doubt. BUT, I just want my child to fit in and be happy which shouldn't be too hard. Just look at his killer smile!

Big Boy Tricycle

Crew tried out the Rifton Rustler tricycle for the first time and LOVED it! He is making great progress with the pedaling... we will work on steering it later;)

Seriously, I am thrilled with how well he is doing on it and hearing him giggle with each push of the pedal is enough to convince me that we will do whatever it takes to get him one.

Every kid deserves a bike, Yes?

Backyard Project

Two years ago we started this yard project. DH wanted a waterfall with a pond where he could grow fish and I wanted a pondless waterfall. So we ended up building a waterfall with a pond with the option of filling in the pond later if we decided to... some things are hard to compromise.

Since then we've decided the pond was just plain ugly, dangerous, and ended up being a pit full of everything that blows around the neighborhood. For some reason any debris flying around would end up in the pond and it was just plain gross. Besides... we didn't really know what we were doing and it didn't turn out the way we had hoped.

This spring we consulted with a landscaper and he walked us through the process of transforming our pond into a pondless waterfall. We had to pull out all the rocks we had hauled in two years ago, fill in the hole with dirt, bury a barrel with our pump in it and basically start all over. We have a cute little waterfall now where the kids can climb all over it, throw rocks and NOT get hurt. I love it! Crew loves to sit out there and throw rocks which is totally fine with me.

I realize the pictures are not that great and it probably just looks like a heap of rocks to you but it does look a lot better up close.

I just had to post this last picture of Crew because his expression speaks volumes... he is totally not comfortable sitting on the rock:)

P.S.

The orange funny looking chair that Crew is sitting in above is awesome! We have outgrown the Bumbo and I found out the company created a bigger Bumbo called the ChildRite. While the price is outrageous I decided it was worth it... and the chair is bigger than I thought it would be. It will last a lOOOOng time. In fact, S (who is 11) can sit in it;)

The Croc

I've enjoyed being part of a yahoo group for moms who have children with CP. We toss around ideas... what has worked, what hasn't and this week we were discussing walkers. I mentioned here before that we tried five other walkers before we found the Croc. Each kid is very different and while one walker is a great solution for one kid it may not work for another. The Croc is a sturdy walker and Crew is making progress. Hope you enjoy the video:)

Freedom at last

TANGO TALK

I had the privelege of going to Crew's preschool today. I was impressed with the interaction he received from the teachers. There are only 6 kiddos with 5 teachers. Crew gets a lot of one on one attention. It's great!

We met with the Augmentative team. They observed Crew and talked to me about the different communication devices. There are several options. Identifying and pointing to pictures of objects/activities is an emerging skill. I feel like Crew would do well with a simple 4 square communication board. We will probably start there.

I was introduced to some amazing equipment. It is exciting to know that there are so many possiblities out there for Crew as he continues to progress. One of the latest state of the art communication devices is the TANGO. The tango is lightweight. The voice is a childs voice. Using the device, a child can say things like, "I love you", or "Your bugging me , dad". I love it! It has a digital camera attached so you can take pictures of family, friends, toys etc and program it to voice the corresponding word or phrase. It even has the option of changing the voice to a mad, whiney, or happy voice. Who wouldn't want this for their kid!

Check it out here!

Mr. Crocodile

Over 365 days and 5 walkers later, I think we've found the golden one. I've had my eye on the Crocodile walker for quite awhile now.

I didn't want to purchase it without trying it first. It has taken some work to get access to one. Crew's PT was able to make arrangements with the medical supply store to order one for us to try with no obligation to buy.

Well, we finally got it here and it is sweet! It has a sling seat that keeps Crew from falling over. We put him in and he was immediately "Crewsin" all over the place. It didn't take long (uh, a few seconds really) to decide that it is definately worth buying.

Last night I let him wander while I attempted to make pear bread. Later, we found Crew attacking daddy's plant. Notice the pile of dirt below. His big brothers tried to act like they were mad at him. "Crew Xander you should be grounded...." they said. But I could tell that actually they are just as thrilled as I am to see him mobile and making messes. Just like two year olds are suppose to!

Earlier this week, when it wasn't freezin cold outside, Crew was able to take Mr. Crocodile for a spin. Up and down the sidewalk he went. The neighbors are so good about giving him lots of positive attention and praise. He was grinning from ear to ear.

I'm thinking I will cover some of the edges with felt or something to keep my walls and furniture from getting all scraped up. But for now... I'm just happy he's movin!

He can get to the door.... but he can't get out. This has opened up a whole new level of frustration. The blasted walker is blocking the door from opening. He also wants to open all the drawers and cupboards in the kitchen. Oh, this will never end... But still, I am smiling!

Cruisin' Crewser & the Reverse Walker

Last week I explained to Tressa (Crew’s PT) that he is getting lazy about using his walker. He prefers to just walk holding onto my hands above his head, which happens quite often since we are usually out in public without the walker. Tressa thought that Crew might be more interested in using the walker if he could see purpose in it. So, she encouraged us to take it with us to gymnastics and Aqua Therapy. Okay now, this is hard for me because it’s like shouting to the whole world, “Look at us, my child has a disability”. Once again, I have to buck it up and just do it. So I did!

The first time we went to gymnastics, I carried the walker into the building. Then I set it down and got him all situated. He just kind of stood there for a while. Then he started to walk, oh so slowly. We meandered into the class all the while receiving encouragement from other classmates moms and the gymnastics staff. He was so proud of himself. He even wore the ole DAFO’s and was beaming the whole time.

We put the walker away for class and practiced all the moves, forward roll, balance beam, the bar etc. After class, I put him back in the walker and we proceeded to walk back to the front doors.

Second Experience. Aqua Therapy. Not so fun. Just as we arrived a bunch of kids were getting out of the Kamp Kid class. We tried to plow our way through the crowd, meanwhile, dodging 100 questions “What happened to him?, What’s that for?, What’s wrong with his legs?, Is he learning to walk? Did he break his leg?”. I answered one little girl, “No, he just has a disability. The muscles in his legs don’t work as good as ours do”. *smile* To which she replied, “HIS LEGS DON’T WORK GOOD AT ALL!”

We made our way to the pool. Aqua therapy was fun. Crew is smiling the entire time. Tressa brought an old walker that we can use in the water. Crew practiced walking in the water and standing with his back against the side.

Since then, we’ve used the walker in public two more times. All four times at the same facility. Crew is learning that this is what we do when we are out and I think it is helping. The last time we went he had the boogie in the bum and was Crewsin’ all over the place. I just have to keep telling myself that when people stare (which is all the time) they are probably just thinking what an adorable little kid he is!

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!

Crew's therapist brought us some new equipment- a creepster crawler made by the Assistive Technology lab at USU. After Crew's gym class we came home and tried it out. He loves it. After going up and down the hall 4 times around the kitchen table and around the bar a few times he seemed to be getting the hang of it. At first he wouldn't use his legs much but by the end he was moving them forward one at a time and pushing off with his foot. I just help by putting my hand by his foot so he has something to push against and yelling out "LEFT-RIGHT-LEFT" like a drill sargeant. It sounds mean but he likes it and it helps him stay focused. He still needs to learn how to kind of push off with his knees. My knees were sore by the time we were finished.

We are loving the "Signing Time" DVD's. I've learned a lot and so has Stockton and Hunter. Yesterday while we were watching, Crew signed "hat" and "glove" which I thought was interesting because we haven't exactly been working on those words.

I love the song on DVD 6 "I'm Really Good". It has these cute kids with special needs and my favorite is the little boy who is running across the ball field in his little walker while she sings "I'm really good at running". So sweet!

Here is a quote from a mom whose son has CP and cystic fibrosis: "If God brings you to it, he will bring you through it." Jodi Hansen

Later,
Mel