Monday, January 25, 2010

Help Kaitlyn Get Her Wheels!

We have now officially been fighting for a mobilised wheel chair for our daughter for two whole years. When Kaitlyn was 15 months we started questioning about a power chair as we knew that it could sometimes take several months to get our own chair. We figured that by the time that Kaitlyn was 20-22 months (2 years old maximum) she would have her power chair and she would learn to be mobile. Children diagnosed with conditions that do not allow them to walk should be given some form of mobility around the same age that they would "normally" be starting to walk. It has been shown and printed in articles that children as young as 18-19 months are old enough to learn how to drive a power chair!

We put Kaitlyn in a power chair at around 18 months, and although the chair was a mismatched set of parts she totally GOT how to make that chair move! The parts were borrowed from a local wheelchair dealer and our local hospital. We never could get the drive controls right as we didn't have proper seating. I'll try to explain. Imagine that Kaitlyn has less tone than a newborn baby and is weaker too! She needs full body support from the top of her head to the tip of her toes in order to maximize all the strength she can muster!! Without full body support she cannot use her limited movement to operate drive controls on a power chair.

After several "trials" with mismatched parts it became more and more obvious that Kaitlyn needed a proper chair (seating, hand/arm positioning, drive controls, chair functions!!!). Something that could provide her with the support she needs and the features that would make learning to drive possible! As Kaitlyn's condition is degenerative she has lost a LOT of function in two short years :( This has made our task even more challenging! As a result, upping the price of a power chair.

Kaitlyn's new power chair will have power seating functions (tilt, recline) as she will need to adjust her own chair for comfort! She will drive her chair with fibre optic switches as we could not convince our OT that Kaitlyn would be able to drive with a mini proportional joystick. She needs to be able to move a body part in all four quadrants (left, right, forward, backward). We were unable to demonstrate this with the type of mini-joystick provided for two trials! The good thing is that Kaitlyn's chair will be able to support different types of drive controls, so her chair will adapt to her needs down the road :) This chair will also come equipped with vent trays so that we can lug cough-assist, vent, suction, feed pump and oximeter wherever we go!!

Wheel chairs can often be funded through various funding programs. However, since Kaitlyn's chair requires such an elaborate set-up and sensitive controls the price tag is much higher than most chairs. We have managed to raise the majority of the cost of the chair with the help of our local children's hospital. The major funding support comes from PC Children's Charity in the sum of $20,000!!! To all of you who have supported the Superstore when they have their yearly Charity drives (when they ask us at the checkout if we would like to donate 1-2 dollars to their Children's Charity) I thank you from the bottom of our hearts. Now you know where that money goes!!! Right back into the community :)

We were told in January that we need to raise the remaining funds needed for Kaitlyn's chair. The Children's Charity funds must be used before the end of six months from the time it's awarded. We got an extension, but that still only gives us until mid-March! As such, this fundraiser means a great deal to us as it is our last chance to get Kaitlyn her wheels!!

My mother and sister have been organising this fundraiser. They are working tirelessly to make sure that this event is a success! They have decided to have the event in Annapolia Royal at the local Firehall. The date is the 21 st of February, 2010 starting at 1:00pm. They have arranged for local musicians:

Fender Benders - Country/Rock

Janis Sheridan-vocals

Jacquelyn d'Eon - Fiddle

Matthew Stanton - Guitar/vocals

Cecile Martell - Guitar/vocals

And more...

We will also be auctioning off a few items, selling tickets on some items and a bake sale, among other surprises :)

Please come and join us for an afternoon of fun! Kaitlyn and I cannot attend the fundraiser in person, but we are hoping to be able to attend via Skype! We will be able to see everyone and everyone will see us through the web camera on my laptop :) If you cannot make the benefit and would like to make a donation you can mail it to "Kaitlyn Hatchard c/o Kathy Horton PO Box 316, Bridgetown NS, B0S1C0" Any check donations may be made payable to Tim or Kimberley Hatchard. "WE NOW HAVE A PAY PAL ACCOUNT!!" Just go to the link on the top right of this page :)

Friday, January 8, 2010

The New Year Catch Up!

Oh my goodness!!! I think I left this post too long :) OOooppss! Where to start!

Christmas was great!! We were all very briefly healthy :) All three kids "got" Christmas this year. They were all excited to receive gifts from Santa. Owen kept saying, "I have to be good, 'cause Santa's watchin'....right Mom"? HEHEHE Alex was just excited :) And Christmas Eve we were getting Kaitlyn ready for bed and we were telling her that she had to go to bed and go to sleep so that Santa would visit! She said, "Santa....present....doll-doll"! Let's just say, Santa delivered :O) She is doing really well with her verbal speech these days.

Kaitlyn finished her last round of antibiotics a couple of days before Christmas. This is our longest stay off of antibiotics since early September (for recurrent chest infections/bacterial pneumonia). Currently we are dealing with a head cold. Sniffles and coughing all around, but Kaitlyn is handling it like a pro! So far no chest infections (fingers and toes crossed please people)!

Kaitlyn finally got her much needed floor sitter. Our local children's hospital made her chair. It is molded specifically for Kaitlyn and we have adapted the chair to meet her every need. When Kaitlyn wears her body brace she is supported from head to toe in this chair :) The floor sitter also has a clear plastic tray. Kaitlyn LOVES to sit up in this chair! She cannot tolerate long periods, but I think she digs the view :)

Kaitlyn was approved for RSV shots again this year!! YAY!!!! This is huge for us. RSV is an incredibly dangerous virus for any respiratory compromised individual. For someone like a child with SMA it can be deadly! (Seriously) RSV shots are not a guarantee that one will not get the virus but it does provide protection! Kaitlyn had RSV last year while receiving the shots but her symptoms of the virus were far less than that of any of the rest of our family. The rest of us were really sick. I don't EVER recall being that sick!!! We are convinced that the reason Kaitlyn faired so well with the RSV was because of the RSV shots! She gets two shots (a divided dose) one needle in each of her legs every month from the beginning of December until the beginning of April! This is the worst of the RSV season for our region. This is not fun...but necessary!

Kaitlyn has been approved for an LTV 1150 ventilator. This ventilator has the ability to deliver higher pressures than what Kaitlyn's current bi-pap (ventilator) can provide. It is said that the vent provides better ventilation for our SMA children. I guess we will see. The machine is a little heavier and slightly bigger than what we have now, but we'll adapt. We like that it has an internal battery for transport and for when Kaitlyn is sick. It will come with it's own stand to make it easier to move from room to room :) Our goal is to keep Kaitlyn's current bi-pap to have as a back-up vent in case the new LTV should ever fail :(

Speaking of failing back-ups!!!! Kaitlyn's newest cough-assist is broken. Apparently there is a broken spring inside that needs replacing. The replacement is simple, but the cough-assist has to go to the States to be fixed!!! This means that we are without a back-up cough-assist for several weeks. A few months ago our hospital only had one cough-assist. I think they may have a second now, but they couldn't lend us one should Kaitlyn's primary cough-assist fail :( Our home care company that takes care of our home equipment needs doesn't even have a cough-assist so we cannot get one from them!!! I really hope our secondary cough-assist machine makes it to and from the States safely and quickly!!!

I think that's everything for now ;)
Kaitlyn sitting in her floor sitter. All ready for bed :)
Kaitlyn sporting piggys and having fun sitting up :)
Christmas morning :)
Owen discovering Christmas gifts ;) Don't touch....have to wait for sissy!!
Alex discovering gifts! Sissy's almost ready!!!
Kaitln with some of her loot :) Happy girl. Want to know what she is smiling at....???
Kaitlyn's favourite Christmas present.....Owen's toy dinosaur that walks and roars :) :)
Kaitlyn with more gifts all cozy in her bed :)