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

Kickoff Fundraiser

The Kickoff Fundraiser for Where There's A Will There's A Cure was this past Saturday (11/17/12) and it was a great success!!  We really could not be happier at how everything turned out.  It was wonderful to have so many of our friends and family in attendance. We are so blessed to have an amazing support system. 

We were very honored that Dr. Childers was able to attend our kickoff fundraiser. He gave an extraordinary presentation! His presentation included videos illustrating the medical research that we are supporting. It is amazing to think about clinical (human) trials. Imagine what this could be for our children affected with MTM, for William. Imagine the increase strength for breathing alone. It could actually save lives. We hope our guests were just as amazed and motivated as we were by the presentation! 

It is incredible to believe that the science to possibly saving our son's life is actually there and just needs the funding. We are excited, motivated and driven to save our son and others like him. We are thrilled that so many of our supporters are with us. We look forward to adding more faces to our Will Power page on our website!!  

http://www.will-cure.org/#!will-power/c1on7

New Bed

William's new bed was delivered today! Big sister is checking it out.

It will be nice to lay in bed with William and read his favorite books! Brown Bear, Brown Bear, The Little Blue Truck books and Dr. Seuss books are his current favorites!!

Play-doh

William is learning how to play with Play-doh from his big sister. I love how he watches and learns from her.

Dr. Whiston

We are thinking that Juliet could have a career in medicine, if she is interested. She knows a lot of medical terminology for a three year old.

Pumpkin Painting!

William's OT brought pumpkins to paint today! William and Juliet both had a great time!

The Stander

We tried out William's stander for the first time yesterday!

Look at how tall he is! Last time William was measured he was in the 97 percentile for length and Juliet has always been on the petite side. So I wanted to get a picture of them side by side up right to see the height difference in William (15 mo.) and Juliet (3.5 yr).

And no Dan and I are not tall people nor do we have tall family members. From discussions with other MTM parents, tall and lean is typical for our boys. 

Please do not think I am delusional when I write this, but sometimes it is just fun to be the dreamer type. I was thinking how amazing it would be to watch all of our boys play basketball together once we have cured them. Oh, I know it is a BIG dream and probably sounds crazy. 

Anyway, William did well in his stander (as long as we kept it positioned so he could see Elmo of course.) Yes, as we tried out the stander for the first time, we made sure to have Elmo on so we was completely occupied.

Blocks

Blocks! William and Juliet have been playing a lot lately with their wooden blocks. They stack them, they shake them in a basket...they are constantly coming up with new things to do with these blocks.

Yesterday, while watching football with Dan, William created the project of placing all of his blocks on his car! It was really fun watching him work so hard on his little project!  

Our therapists are always trying to get William to put items in a container and he will never do it for them. I wonder if this counts? :-) 

Website is Up!

We have launched the Where There's A Will There's A Cure website!

We would love to have you visit us at www.will-cure.org

Ready, Set, Go!

Ok, while William took his nap, Juliet and I came up with the great idea of testing out the Barbie car on the ramp!

Ramp

Below are photos of the new garage ramp (chair included for scale).

Dr. Appointment Photo

Here is a photo of William and Nurse Mels at the University of Chicago!

Sitting Progress

Look no hands!!!

Today in physical therapy William sat unsupported for a maximum of 15 seconds!!

(In case you are wondering what he is so focused on...he is watching his Sesame Street!)

Where There's A Will There's A Cure

For those you that follow our Blog, but are not on facebook, we have some announcements!

We have founded Where There's A Will There's A Cure!

Where There's A Will There's A Cure is an all volunteer not-for-profit 501(c)(3)
charitable organization and its purpose is to raise funds to find a cure for
Myotubular Myopathy (MTM).

We have a facebook page and are working toward launching our website very soon!!

And the Chicago Area Kickoff Party information is shown below!


Chicago Area Kickoff Party Fundraiser

• • Saturday, November 17, 2012
  • 7:00pm until 10:00pm in CST

• South Branch Tavern & Grille 100 South Wacker Drive Chicago, IL Event Hosted by University of Illinois Kappa Sigma Alumni $60 per person including three hours of open bar and appetizers. To get your tickets online please go to: http://southbranch.hastickets.com/eventinfo.aspx?eventId=429 For more info please contact Tom Kantas at thomaskantas@yahoo.com or at (708) 699-2469

Getting easier

William is doing well.  He is very happy to be at home with his family.

Thank you to everyone that supported us through the last couple of months.  We really appreciate it.


Here are some photos to illustrate the machines and other items we are using to keep William healthy.

Ventilator

Oxygen

Cough Assist 

Suction Machine

Humidity Trach Trial

Chest Therapy Vest

Pulse Ox

William!!!

Feeding Pump

Medical Suppies

Cabinet with more drawers

Medical Supplies

Cabinet

Best Buddies

Monthly Medical Supply Order

Here is a pic of William's monthly supplies (excluding O2 tanks). Thankfully our night nurse is an organizational specialist! (we really like her so far)

After 46 days, William is home!

Hand washing station

William will be coming home soon. Check out our new hand washing station and paper towel dispenser.

Frustrated

It is time to get William home. The family is getting frustrated with the current situation.

Hopefully we can bring him back home next week.

Hair Cut at AHK

Yesterday Uncle PJ and Aunt Megan visited William at Almost Home Kids and helped us give him a much needed hair cut!!

Things seem to be moving along. William is well, nursing has been approve, we continue to work on our training and the electrician installed the dedicated circuits in our house (both upstairs and down)! 

Stressed

I have to admit I am stressed. I feel like things will get better if I can just get my little guy home. Why does this process of finally getting help have to take so long and be so difficult?

It began with my confidence being shot the first day at Almost Home Kids. The first day here, William's vent was switched out by the medical supplier because it wasn't making sound when it was alarming. (Even though it was working at the hospital.) I noticed that William was sweating and his breathing rate was way too high, I then called the hospital to verify his settings (and had them faxed over). The new vent was set up for him with different settings. The poor child was panting trying to take his own breaths when he wanted to.  I of course was completely stressed that A. This happened and B. I am the one who figured it out (I thought they were suppose to train me on the vent.)

William's trials off the vent are also not going as smoothly as they were in the PICU. Sometimes he does great with no problems other times he almost seems to panic and become overwhelmed by his secretions. I think the two main factors are timing and secretion management. 

Oh and last Saturday (notice the day of the week) we received a letter in the mail from our insurance stating that following "backup" equipment has been denied: ventilator, suction machine, oxygen, IV pole and feeding machine. First of all the use of the word "back-up" when referring to a "portable" vent and suction machine is just un-educated.   But, if they are going to use the term back-up, what is their back-up plan for the vent leak check, circuit changes or if something goes wrong; bag him and call 911? How am I suppose to take him to doctor appointments with out a portable suction machine? And are they suggesting someone in our house carries the vent, suction machine, oxygen concentrator, IV pole and feeding machine up and down the stairs everyday? Do they understand the function and medical necessity of all of these items? 

(some background info.: We previously had a portable suction machine, 2 IV poles and 2 feeding machines, but due the vent we needed to switch medical suppliers and of course now have to re-fight our previously won battles with insurance. Also note we bought a 2 story house prior to having children.)

On a more positive note, we had a very successful EI meeting resulting in more therapy for William. (Huge thanks to Meredith for all the advice!!) And most importantly William is well and continues to be a happy little boy! (He is especially happy if any kind of sports or Elmo is turned on the TV.)

One step closer to home.

Approval for nursing came through today :)
William can come home after we complete a 48 hour training course and find nurses to staff our case.

Juliet Visits William

Nema spent the day with William and Juliet and I came by toward the end of the day! Juliet is always super excited to see William. In fact it is always a scene to get her to leave.

We arrived!

William is being transfered

Will is on his way to Almost Home. He will be at Almost Home for 1 - 2 months.