Brown Bear, Brown Bear

Brown Bear, Brown Bear, What do you see? by Bill Martin Jr./Eric Carle

Since I have already told you about William's love for Polar Bear, Polar Bear, I thought I would share a little about Brown Bear, Brown Bear.

What do you see?

Brown Bear, Brown Bear has always been a favorite! We would read the book and William's job was to turn the pages. He loved listening to us read Brown Bear! Thanks to his speech therapist, this book has been adapted to so much more. She made little picture cards for each page. Now William interacts with us and the book as we ask him to help put on and match the the little pictures. He loves it and is very serious about his job of putting on the pictures. We work with him to point to his eyes for "what do you see" and to himself for "looking at me".

New Mobility Van!!!

Take a look at our new mini-van.

One of the struggles that was a continuing problem for our family was the transportation of William to the weekly physician visits. We were not equipped with a vehicle that allowed for easy transportation of our kids.

The problem has been solved.  With the help of Grandpa Jim, Grandpa Brian and the State of Illinois, we have purchased a new Chrysler Town and Country equipped with a fold out ramp!!!!

The process of buying a mobility van is more difficult that one may realize.  First, vehicle manufacturers do not make these type of vans.  The ramps are installed separately by third party companies. 

You can purchase the van in one of two ways; first, you can purchase a van from a mobility dealer.  They have some on the lot that have already been converted.  The second method is to buy a van and then have your van converted.

After looking at all of our options, we decided that we wanted a brand new van and to then have that van converted.  For us, this was the best option as it allowed us to get the van we wanted along with some savings on the conversion.  We decided on a brand new van instead of a used van as we felt that we would likely keep this van for a very long time.  The price of the conversion is $16,000.00 so we felt that we should buy a van that will last a very long time as we did not want to put a new conversion in an old van.

We first went out and shopped for different kinds of vans.  We settled on the Town and Country as it has the most interior floor space and they offer a lifetime warranty for the entire van.

A "conversion" is the work done to allow for the entry of a wheelchair.  All conversions require that the floor of the minivan be lowered, the sliding doors are altered, the rear interior is stripped and re-done and finally a ramp is installed.   There are many different levels of conversion.  Some have power ramps that automatically extend when the door is opened, and some allow for the wheelchair to be placed in the front passenger section.   Due to William's condition we went with a Braun Companion Van.  This conversion was the best fit for us as we do not anticipate William sitting in the front, and due to snow conditions, we prefer a manual ramp.  Some have ramps the enter through the rear of the van, but we decided to go with a side entrance as we wanted William to be closer to the driver and the rest of the family.

Chrysler gave us an extraordinary deal on the van and the warranty (it might have been my excellent negotiating skills... I also had help from another skilled litigator... thanks Jim).  We then took the van to have it converted.  The conversion process took about a month.

William loves the van.  It has two DVD screens so Will and Juliet can watch movies while we travel.

I am so happy that this problem is solved.  Next up, new house that has wide walkways to allow Will to drive a power wheelchair throughout the house.

Basketball!!

William has always enjoyed watching sports on TV.  Now he has been enjoying playing with his little basketball hoop. We all play, rolling the ball back and forth and taking turns making baskets. We are excited to see improved hand eye coordination and strength.  

Nap Time:  Our Little Boy and his Basketball

William and Tommy the Telephone

William loves this old toy that one of his therapist has called Tommy the Telephone. (I have looked for it on eBay, but have not found one yet. Oh well, I guess if we owned one it would not be near as cool when he therapist brings it.) First William holds the phone's hands, which are heat activated, then it rings and makes an animal sound. We then help him find the animal that makes that sound and ask him to put it in the phone's opening in the back. When his therapist first brought this toy in the fall, it was an instant hit with both William and Juliet. Although she is not in this video, Juliet usually helps William match the animal to the sound. William is always super serious about all the tasks that are involved in playing with this toy. He loves it so much he could probably play with it for the entire duration of his hour session, but it is usually saved for the end.

William and an Illini cup

 

William in his stander

William has continued to do well in all areas of his development. Over the past week, he has really turned on. He is more engaged in his therapies and activities then we have ever seen. This change has been noted by not just me, but all of his nurses and therapists. Part of it is probably the age that he is at, but still it is incredibly exciting. I am so thankful for all of his wonderful therapists. They are excellent! It has been amazing to work with them and learn how to help William develop and learn in spite of his disabilities.

Polar Bear, Polar Bear

Polar Bear, Polar Bear, What Do You Hear? By Bill Martin Jr./Eric Carle is William's new favorite book!

Polar Bear Polar Bear was a gift from his Grandma. She found a version with buttons to push with all the animal noises. Like any new toy it had to be studied by William. (The picture to the left shows William's pensive look or the "thinking pose" with one finger by his eye.) However after a few reads, it became a big hit. He plays with his book with so much energy and determination, turning the pages quickly to get back and forth to his favorite animals and then pushing the animal sound buttons. So far his two favorite animals and sounds are the Lion and his roar and the Leopard and his snarl.

In the below video, William shows me his two favorite animals! I  was going to asked him to show me the hippo or zebra next, but in good sibling fashion it was taken away by Juliet! She likes reading the book with us too. Her favorite is the whistling zoo keeper.

William Sitting at his Desk

Two weeks ago one of William's Physical Therapists (PT) began her session by telling me that she wanted to challenge William a little more and have him sit at his desk and play with toys. Up to this point we typically let him watch Sesame Street while sitting so he is only working on gross motor. The whole time she was explaining the plan William shook his head back and forth saying NO. (He did not approve of the change.)  She worked with him as he shifted around trying to keep his balance, while I read him books with him turning the pages and stacked blocks for him to knock down. We did this for about 30 minutes, until William was tired and needed a break. After we laid him down on the floor he began to wave bye bye to his PT (even though he still had 30 minutes left in the session). I tell this story because I found it funny how he communicated with us that day and it is a point to measure progress. The above video was taken yesterday with his other PT. Yes, there is obviously Sesame Street on TV, but he also is able to play with his talking cars and balance against his desk.

Little Voice

Our Christmas Blessing this year is hearing William's little voice again! It is so wonderful to hear little sounds from him. It truly is the best Christmas gift we could have ever imagined! He is able to make sounds both on and off the vent. It is so amazing to hear him experiment with his little voice. (The video is really soft, but if you turn up the volume you may be able to hear him!)

Happy, Sweet and Funny

I am excited to report how wonderful William has been doing lately in so many aspects of his development!

The most fun is his little personality. Here is the latest fun story - The other day we were all sitting at the kitchen table working on Christmas Cards. William was sitting in his chair playing with one of those cars with a steering wheel with a horn that says "beep beep - out of the way". (Yes, probably not the best phrase to teach a child that will be graduating to a power chair in the next couple of years.) At one point I look over and William had his head laying down on the steering wheel. I run over and say "William did you loose your head? (This is the phrase I use when he is tired and looses his head control) Are you tired? Do you want to go lay down?" Right before I get to him he pushes up his head using his little arms against his tray and looks up laughing. The laughing was silent, but it was the biggest grin I think I have ever seen on him. At that point we all realized that William played a game on me and everyone laughed. William looked around the room at us with the biggest smile.  He continued to play this game until he wore himself out.

We are also seeing a gains in breathing strength while off the vent, tolerance to the passy muir valve (PMV), gross motor and fine motor!! For those that are not familiar with the passy muir valve, it is a one way valve that when place on the the trach allows air through the vocal cords and helps with speaking. William is wearing his purple PMV in the this video of him and in the pictures below. I am so proud of my little man in this video! He is sitting up, off the vent with his PMV, no suctioning requirements and playing!

William has gained strength so that we can hear his little voice sometimes during a cry. Not that I want him to ever be sad and cry, but I do like to hear his voice again. This also goes back to his little personality showing. He now will cry to get my attention, when it is time for bed, or when the iPad is taken away. Most often he brakes out the fake tears when I leave. Yes, my little man has actually cried when I just walked to the kitchen. Sweet boy, how can I not run back to him to hang out more. This is why I am behind on almost everything! And yes, he has been known/reported to "convince" his night nurses to let him play with his iPad longer before bed.

As far as his fine motor, I think I will have to give credit to the iPad. He now uses either two or one fingers to navigate an app! His occupational therapist (OT) noted this improvement in his latest evaluation. His OT and DT (developmental therapist) have both reported how mechanical he his. How he studies something that he is interested in until he figures out how it works (our little engineer). The key phrase is "that he is interested in". If he is not interested, he will push or toss the item off of his tray (again personality). We have created an "all done" basket that he can he can put his toys in instead of winging them to the floor.

Raising William has been full of serious medical challenges. But he is amazing, even with all of his challenges he continues to be happy, sweet and now funny. It is incredibly rewarding to see him doing so well and making gains in so many areas!

Front Page Story

Our story and the Where There's A Will There's A Cure mission is featured in the Kane County Chronicle! We were so excited this morning to see William and Juliet on the front page!

Newsletter Article

The Centronuclear and Myotubular Myopathy Information Point Newsletter included and article about Where There's A Will There's A Cure!!

Check it out!

http://centronuclear.org.uk/theinformationpoint/newsletters/2012/2012_3/where_theres_a_will.html