MDA Walk 2010

Yesterday was our Walk for the Muscular Dystrophy Association here in Halifax. It was a beautiful sunny day. It was rather hot though :( Kaitlyn gets a little fussy in the heat. She made it through the day though and seemed to enjoy the Walk for the most part :)

There were a lot of people at the walk this year. Most individuals/teams either met or exceeded their goals for fundraising. We are thrilled to be able to give back. MDA has been very supportive to Kaitlyn. They have provided many peices of medical equipment over the past three years. Thanks MDA Canada!!

Here are a few photos of our Walk. Sparky the firedog was at our event :) Sparky paid Kaitlyn a special visit after the walk! She was thrilled...she adores Sparky!!

EHS & Sparky the Fire Dog

We are in the process of updating Kaitlyn's Special Patient Card with Emergency Health Services. A special patient card is a protocol we set in place so that Ambulance drivers know what to do in the event that we should have an emergency with Kaitlyn and need their services. In setting up this new protocol we have had the pleasure of meeting an EHS supervisor who has taken an interest in Kaitlyn. He has requested that our hospital set up an information day where they can learn more about Kaitlyn's condition :) They have also asked the firefighters at our local fire department to attend. The firefighters are our first responders :)

As a result of our meeting with the EHS supervisor, our local fire chief payed Kaitlyn a visit a couple of weeks ago. He brought us a reflective house number; much more visible signage for EHS and anyone else needing to find our house! They even took the time to find us a sign post, pounded it into the ground and hung the sign! The firefighters also arranged to have our road sign moved. The sign was originally placed on a telephone pole about 15-20 feet from the main road. Thank you very much to our local Fire department!

When the fire chief visited he said that he would send Sparky the Fire Dog over the next weekend to see Kaitlyn :) So today Sparky the Fire Dog walked into a very happy little girl's room!!! She was beaming from ear to ear :) She absolutely LOVES dogs and to see this great big "dog" in her bedroom tickled her :) Sparky gave Kaitlyn a stuffed dalmation dog and a firehat :) She LOVES both! Kaitlyn took the dalmation dog to bed with her :)

The Fire Chief also brought several firefighters and a firetruck over. They opened up all the compartments on the firetruck and let Kaitlyn, Alexander and Owen check out anything they wanted :) This was so nice of them!! Our children don't get to go out as much as we may like so they were thrilled to have a visit from a firetruck and Sparky. They will talk about this for days now :) Thank you again to our local Fire Department! You guys are great!

This is how Sparky arrived for his visit :)

Kaitlyn and Sparky :)

Kaitlyn and her loot :)

She likes big trucks after all...LOL

Sparky was so nice to Kaitlyn

She even tried to wave to him :)

Alex loved the firetruck too!

Firefighter Alex...hehehe

Kaitlyn took "Sparky" to bed :) (She calls her dalmation Sparky)

Ready...Set...Drive :)

Sorry I haven't written in a while. I wanted to update everyone on Kaitlyn's fundraiser for her power chair!! The fundraiser was a success! We were able to reach our goal. Kaitlyn WILL have her wheels! Our next fun....driving :) Look out brothers, walls, kittens....here she comes! We are thrilled for her to say the least :)

The chair will take a couple of months to build! We are having them build specialized vent trays to carry all of Kaitlyn's machines. She is getting an Invacare base. The vent trays are being built from scratch. Her seating is also being custom built :) It will fit her like a glove. We will of course have to replace the seating more often this way, but it is much more comfortable and supportive for Kaitlyn. She will use fibre optics for drive controls. This will take Kaitlyn longer to figure out than a joystick, but ANY mobility is better than no mobility!!! She will eventually figure it out and drive like a pro!!

I cannot wait to take pictures and video for ALL who have supported us! Speaking of which I want to thank everyone for your heartfelt support! People are extremely generous when it comes to the needs of a child! We had people attend our fundraiser that won the fifty/fifty draw and donate their winnings back to our cause.....people that could have used the money themselves!!! This overwhelming support for our daughter is NOT unnoticed!! We are just so grateful to our entire community for once again pulling together and reaffirming once again why we are so proud to be part of such a small town :) We may have a city address but our hearts are rural rooted!!!

We have also been so proud of our SMA community!! You guys are above and beyond! People facing the exact same struggles as us and they scrape together a donation for our cause!!!! This kind of act is unheard of in other "communities". We are so very greatful for your support. Our daughter would NOT be alive today if it were not for the SMA families and what they have already shared with us! Then this.....it's just so overwhelming for us! We don't know where to begin to say THANK YOU! The thanks will be in our daughter's face when she figures out the freedom the power chair has to offer!!

On another note, we have been battling a string of nasty lung infections! Bacterial pneumonias, back to back, and NOT fun!!! Kaitlyn colonizes pseudomonas (two strains...oral antibiotic resistant!), Stapholococcus Aureus, and Stenotrophomonas Maltophilia! The infections almost always hit in the same way! She starts with increased secretions, developing to a level that she becomes bi-pap dependant to control them. She almost always has fever (high 38's to 42)! Secretions are always at some point green or greenish! Then her lungs get "junky" (wet)! This can sometimes develop over a couple of days or sometimes happens as fast as 12-18 hours!!

She was sick just two weeks ago! This past illness hit her fast! She woke up a Monday morning with slight increase in secretions. She had a fever (39.4) by late morning. By afternoon she was bi-pap dependant! By evening we could finally hear the junk rattling around in her chest...up to that point she had been clear! We decided to keep her home and call the pediatrician in the morning. I had planned to get up with her through the night! When Kaitlyn gets junk in her lungs she needs chest physiotherapy (chest clapping/CPT) and cough-assist every two to three hours around the clock!! After her 2:00am treatment she was maintaining sats of 82-84 on 6 litres of O2 through her bi-pap (ventilator), with increased settings!! We decided to wake the boys and take her in to the ER!

As always she grew the same things in her cultures. She had white cell counts of 27.9 (normal 6.0-15.0)!!! Her platelet count was 107 (normal 150-400)!!! Crazy! This typically indicates severe infection! There has never been any indication of bladder or blood infection. Sometimes her ear (right-the one she lays on) looks infected.

Our question to the experts is can this happen with aspiration (that fast)?? Or does it sound more like bacterial infection in the lungs?? We are wondering if there is anything we can do to prevent these pneumonias!! It is so hard on our girl being sick!! She has been on antibiotics since last September...almost constantly!! Our longest stretch is 20 days!!

We hope everyone else has had a healthier winter so far than us! We are very impatiently awaiting spring and warmer weather!!

Kaitlyn being her cheeky self :)

My boys playing baby!! They pull their shirts down over their knees and waddle around the house =D

Kaitlyn sitting in her floor sitter talking to Owen!

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 :)

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 :)

Ear Pillows

About a year ago now Kaitlyn started having continuous problems with breakdown on both ears from having to constantly lay on them. Even off-loading by rolling her from side to side didn't work. We would get raw skin that would lead to infections even though we kept the skin as clean and dry as humanly possible! At one point our infections were so bad we had to see plastic surgery as we thought that the infection might be in the cartilage of the ear!!

When our pediatrician told us how serious the infection could be if it were in the cartilage of the ear we knew we had to find a way to get Kaitlyn's ears up off of the surface she was laying on! I thought that if Kaitlyn were to lay on a pillow with a hole in the center then she could still be sidelying while having her ear completely suspended (zero pressure)! (Sidelying for a child with SMA type 1 is essential as they cannot swallow. It allows them to pool secretions in their cheek and even spit out secretions so that they do not aspirate.)

I like to use flannel fabrics when making my pillows. I find flannel absorbs moisture quickly and washes really well. The flannel is also soft and I find it irritates Kaitlyn's skin less. I started with a circle of fabric slightly larger than Kaitlyn's head. For us at that time a dinner plate worked great as a template for marking my fabric. Any circle shape the right size will work to make a pattern for cutting out your fabric. When cutting out my circle I always fold my fabric in half with the right side in. This way I cut out both sides of the pillow at the same time. I then take these two circles with the right side still in, and I sew around the outside with a sewing machine.

I then fold the circle shape in half and cut out a small semi-circle in the middle. The hole in the center of the pillow does not need to be any larger than your child's ear! The smaller the hole the easier it will be to position your child on the pillow when it is finished. I always find that if I cut out the hole to fit Kaitlyn's ear then the finished product will be slightly larger than her ear.

I then turn the fabric right side out and begin sewing up the ear hole. For Kaitlyn's pillows I like to turn the fabric in and sew a nice smooth edge (seamless). This way there is no edging to rub against her ears. Once I have the hole about two-thirds closed I then stuff the pillow with a hypoallergenic polyfoam stuffing. I like to use a proper pillow stuffing as it holds it's shape quite nicely through continuous washings! Once the pillow is stuffed full I sew up the rest of the ear hole. I stuff my pillows full but not too firm!

I have had several families ask me recently how I make Kaitlyn's ear pillows so I thought that I should just post how I make them :) I hope this helps any families interested in making their own pillows! I know for us Kaitlyn is on an ear pillow 24/7 now!!

PICU and Another Lengthy Hospital Stay

Remember when Kaitlyn was sick with a pnuemonia back in September?? Well it would seem that we never really ever got that cleared up!!

Kaitlyn was on ciprofloxacin (broad spectrum antibiotic) back in September for an illness that seemed bacterial in nature. We know Kaitlyn colonizes pseudomonas in her lungs so cipro is always our drug of choice when she gets an infection. Well back in September cipro didn't work to get rid of the infection. Kaitlyn ended up hospitalised on IV antibiotics. The IV antibiotics were given for two weeks (one week at home) and then another eight days on two broad spectrum oral antibiotics!

After about a week Kaitlyn started with increased secretions again. So we put her back on oral ciprofloxacin. She seemed to respond nicely to the antibiotic this time and we breathed a sigh of relief! However we did run cultures also and the cultures grew heavy growth psuedomonas and heavy growth Staph. Aureus among other bugs. However since Kaitlyn seemed to be getting better we assumed that the buggies weren't infectious but rather just colonized in the lung :(

We finished a ten day course of antibiotic at home. After which Kaitlyn was healthy for two whole days! She went from healthy and happy sitting up and acting normal to wet and junky lungs in twelve hours!! We chose not to expose Kaitlyn to all the sick kids flooding the ER late at night. I stayed up and did therapies every three hours all night last Monday night. In the morning we took Kaitlyn to ER. It would seem that she didn't appreciate being moved! She crashed down into the seventies a couple of times in ER and was having a rough time coming back up! We increased her vent settings and bled some O2 through her bi-pap (it took both to bring her up to 90% O2). Typically we don't like the O2 through the bi-pap, but Kaitlyn's PCO2 level was fine and our goal was to discontinue the O2 as soon as possible!! They accessed Kaitlyn's port and began IV antibiotics right away. I'm glad that they did. She was running a high fever and we believed that she probably had something bacterial as nobody else in our house was sick.

Because Kaitlyn was a little unstable she made the nurses and ER doc a little nervous I think. They decided to send her to PICU. We have not been to PICU for an illness in over a year and a half. As it turns out PICU was an absolute nightmare!!! H1N1 EVERYWHERE!! And me without my vaccine yet...EEEPPPPS! Needless to say I was washing my hands like crazy! As luck would have it, Kaitlyn responded well to treatments and we got rid of the O2 through the bi-pap the next day. We did cough her with O2 for a day longer. X-rays showed a pneumonia in Kaitlyn's upper right lung. She also had some infiltrates throughout the lungs (areas looking mucousy/wet).

After spending one night in PICU we were able to move Kaitlyn to regular floor. This way she could be more closely followed by doctors and specialists that know our daughter best! Also Kaitlyn's pediatrician works in our children's hospital. This is great for us, as any time we are hospitalised we are admitted under our pediatrician's name :) Not a soul knows Kaitlyn like her pediatrician, and while she is not an SMA doctor we love her as she is willing to work with us and listen to our input!! As you know this is huge for our SMA families....just having someone who will listen to and try some of our unconventional ideas :P

Since last Tuesday we have been waiting for Kaitlyn to show some signs of improvement! Her fever is gone, she is not needing O2 in any form and her bi-pap settings are back to normal. But...she is still junky! We took an x-ray yesterday that showed the pneumonia in the upper right lobe has cleared (there's no consolidation anymore). But there are infiltrates throughout the lungs and appears in particular to have spread into the lower right lung! URG!!! In a consult with Infectious Disease yesterday, they confirmed that Kaitlyn is on the right antibiotics to cover the bugs she has...so why is she still sick?? Today we have to redo cultures and they also want to redo her H1N1 test and add some plasma tests (?). You know I almost hope that they find something viral!!! Crazy how we used to wish for Kaitlyn NOT to get a virus! Throw in a couple of super bugs and all of a sudden we are praying for the viral CRAP!!

Hoping my next post is from home...