Gastroparesis :(

Many of you that follow Kaitlyn from day to day have already been updated on this current hospital stay. I have been meaning to update our blog for the few people outside of our SMA community that also follow our daughter. We have had several people ask about her condition. It is easier to write it all down here than it is to write individual letters!! For those of you that have already been updated...skip to the end for the past couple of days :)


Gastroparesis...gastroparesis...it's never going to sound good no matter how many times we say the word. Kaitlyn has been diagnosed with gastroparesis. This is a fancy term that means Kaitlyn's stomach has gone on Holidays and we have no idea when it will return. It means her tummy is paralysed. A tummy that is paralysed cannot contract to help push food along the digestive tract. This means that whatever we put in Kaitlyn's stomach just sits there for a very long time. She is unable to take in any nutrition orally (through her G-tube). Kaitlyn has been receiving IV nutrition called TPN (total parenteral nutrition). This is a kind of "food" that can be infused directly into Kaitlyn's veins. It will provide her with all of the nutrition she needs until we can figure out what to do about this paralysed tummy.

Let me go back a bit and fill you in on what's been going on. Here's a little timeline for you from the beginning until today:

September 23

Kaitlyn has been dealing with really poor digestion for the past couple of weeks. Up until yesterday I was getting about 40-45 mls per hour into her. Last night I could barely get 25 mls per hour into her and this morning she had a tummy full. I had to turn her feeds off. When I checked her tummy at 10am one hour past her normal feeding time...she still had ALL the food from the morning! (We know this because we aspirate Kaitlyn's tummy before addig more volume. Otherwise Kaitlyn vomits). To top this all off, Owen brought home a cold from the first week of school. Now Kaitlyn has it. Yesterday morning she aspirated secretions. Today she is really junky with an off/on fever. We are heading into the hospital.

Sept. 23 (From our local Children's Hospital)

OK...so we are settled into our room. TPN is starting in a few minutes, as her gut has now completely shut down :( I am hoping a day or two rest on TPN and then we can begin feeds again REALLLLYYYYY SLOOOWWWLY. Her chest is getting worse as the evening begins, but blood work and chest x-rays taken this afternoon look pretty good, so we will see where this goes. So far the digestion is by far the worst thing happening! We are just watching the chest right now, no antibiotics yet

Sept 23

We are on complete tummy rest. She is on TPN and all oral meds have been DCed for now. We gave her ranitidine this evening to help her moss colored stomach contents and she spit that up!! I guess she's trying to give us a hint! NOTHING IN MY TUMMY....PLEASE. Right now she is really dehydrated. She is so dry right now that she went from sats in the eighties to sats in the mid-upper ninties. Her tongue is sticking to the catheters :( Kaitlyn's Pediatrician has upped her maintenance (the resident had it set at a very conservative rate). Hopefully she can begin to rehydrate now. We are waiting to decide on antibiotics for her chest when we see how she looks tomorrow morning. I suspect antibiotics will be the order of the day, although my girl has surprised me a time or two in the past ;P Our goal is to restart feeds over the next couple of days and just go very slowly!!

Sept 24

Kaitlyn had a rough night. She was so dehydrated that her RR was in the fifties and her HR was 160's-170's!! She also started with fevers which may have been the dehydration or may have been her worsening chest? This morning she is a little better hydrated (they have been hydrating her slowly due to the severity of her chest). Her RR and HR look better and she seems a bit more comfortable. She is sill having fevers though. A radiographer has reviewed Kaitlyn's chest x-ray from yesterday and the conclusion is that they can't rule out upper right pneumonia and based on her symptoms an upper right pneumonia fits. We have decided to treat her with antibiotics to be safe! We are using IV antibiotics as she doesn't seem to be tolerating ANYTHING orally. We are continuing total tummy rest for the next couple of days. Hopefully once we get this respiratory virus/pneumonia clearing we can begin weaning her back onto stomach feeds.

Sept 25

Kaitlyn is a little more stable respiratory wise this morning. It's amazing how much junk will come out when you are better hydrated! Her sats are still lower than normal, but at least we are in the nineties! Her tummy is still not working! She is not even digesting her own stomach enzymes/fluid. We have had to put her tummy to straight drain this morning as she had a really gaggy spell that scared me. She had over 35 mLs of yuck in there! She tends to vomit when her tummy is bothered!! (Yes, she does have a nissen :/) Her fever broke over night and so far has not come back :) I guess the antibiotics are doing something. Hopefully in a day or two we can start to think of trying her on a little pedialyte?? Once we get her back on feeds we can get out of here! We can do IV antibiotics at home :)

Sept 26

OK...so last night Kaitlyn was really fussy. When I went out to the nurses' station to see what we could do, the nurses were like, "is that Kaitlyn we hear hollering"?? Yup! We ended up doing an x-ray of Kaitlyn's abdomin. Everything looks good. There are no signs of blockages or any anomaly. So since there was nothing on the x-ray, she has bowel sounds, her bowels are moving, and her tummy is soft, I thought well perhaps she is just hungry. She is getting nutrition through her port, but her tummy is still empty. She could still feel yucky with nothing in her belly. We decided to try her on 5 mLs of pedialyte. Well, she seemed to tolerate that so we set her pump on 10 mLs per hour and she stopped fussing and digested the 10 mLs per hour just fine all night long :) This morning she is back to not tolerating the pedialyte. But she is tolerating her tube being elevated (no longer straight drain). I think this is going to be a longer process than I had originally hoped.

We have put her back on her Glycopyrrolate through her G-tube. The alternative is to give it to her through her IV, but then we have to turn her TPN off each time we give it as the two are not compatible. We also need to be able to give her the coumadin tonight!! This will be the fourth night without it, and if she cannot tolerate the oral dose tonight then we will have to inject her with Enoxaparin :( I really don't want to have to start sub-Q Enoxaparin injections. Please keep your fingers, toes and eyes crossed that she wll continue to tolerate at least a teeny bit of pedialyte in her system!! Oh yeah....her chest sounds a bit better today. Fewer marbles rolling around (to steal a phrase from another SMA parent) :)

Sept 27

Kaitlyn had a much better day today respiratory wise. She actually spent a few nonfussing hours awake!! She watched some Dora and tried to talk a bit :) Her chest is still junky, but nowhere near what it was! I think the antibiotics have definitely helped. This morning we decided to try her on pedialyte very slowly!! I started her at 2 mLs per hour. Might seem kind of slow, but I REALLY wanted her to accept the rate! After a couple of hours it was obvious that she was going to be able to tolerate more so I bumped her up to 5 mLs per hour in the afternoon. This evening her rate went up to 10mLs per hour and she stopped digesting once again! GRRR! I guess it is back to a snails pace again tomorrow, if not tonight. We have started Domperidone (motility drug) in an attempt to help her digest her feeds. I know it takes a few days to get into your system, so I will hope it starts helping soon. I still want to be out of here by the end of the week! Hopefully Kaitlyn's tummy cooperates :)

Sept 28

No big changes today :( Tummy is still not working! ...And I so wanted to be home by the end of the week! Tomorrow is Wednesday, so even if she starts tolerating consistent volumes with slow increases of ONLY pedialyte it will take AT LEAST three more days to get out of here. The doctors want to see her digesting at least half her normal rate consistantly of only pedialyte before we start adding diluted vivonex. Then building her up to a rate that nutritionally and from a hydration stand point will be manageable... from home......you get the picture. PLEASE, PLEASE, PLEASE let the domperidone (motility med.) do the trick! We are likely consulting gastroenterology tomorrow.

Sept 30

Kaitlyn's tummy is still on Holidays :( We cannot seem to get even 2-3 mls per hour into her around the clock! She seems to be tolerating us putting three of her oral meds down her tube. I question how much is actually being absorbed when the same volume we put in is still there three hours later!! I have been questioning about going home on TPN! In Nova Scotia going home on TPN simply is not done....at least not very often ;) However, this morning I find out that our nursing agency doesn't even cover patients receiving TPN!!! In other words before we could go home we have to find a new agency and all new nurses! Not to mention getting Gastroenterology to sign off on the TPN so that we could go home at all!!! Please let Kaitlyn's tummy start working!!!

October 1

Bad news!! We have to remain in hospital for at least another two weeks, unless Kaitlyn's tummy starts working on it's own in the meantime!!! They won't allow us to go home on TPN unless she requires the TPN longterm! The gastroenterologist feels that Kaitlyn has gastroparesis :( They are going to request a modified dye test to make sure that there are not any other blockages/barriers preventing fluids from leaving the stomach. This will confirm the gastroenterologists suspicions that we are dealing with gastroparesis (paralysed stomach). The gastroenterologist has recommended that Kaitlyn be put on a med. called Cisapride (instead of domperidone). It is a controlled med. that we have to go through Health Canada to get! We should be able to start this med. by the middle of next week. We then have to wait at least a week before determining whether or not it will do the trick to get Kaitlyn's tummy working again! I am hoping her tummy decides to wake up on it's own!!! If it doesn't work we will have some tough decisions to make. Longterm TPN (AT HOME!!!) or a fixed J-tube (which there are no guarantees would solve our issues).

October 5/6

Two nights ago Kaitlyn had a bunch of pedialyte back up in her tummy. I turned the pump off as it was obvious that she wasn't digesting. A few hours later I checked her residuals and twenty mls of green fluid comes out her tube (bile). This shouldn't happen unless there is a blockage in the bowel. So Sunday we had more abdominal x-rays and the radiologist didn't see anything. This morning Kaitlyn woke up with a slightly swollen tummy (and I mean slightly) and she fussed a bit when we touched her tummy. Our doctors got concerned. The resident then came in and told me that there was an area on Kaitlyn's abdominal x-rays that they couldn't rule out a partial-blockage.

So we got bumped to the front of the line for a dye test this morning. Our doctors were concerned about a blockage that may need surgical intervention. They injected a radioactive dye into Kaitlyn's stomach (through her g-tube) and watched her abdomin under flouroscopy. Flouroscopy is like a live x-ray. You could see the dye enter the stomach...fill the stomach...and then....nothing! They waited a few minutes and then they tipped her on her right side (to facilitate drainage..as the tummy drains better while lying on your right side). Still nothing!! We had to turn her as far over on her right side as we could get her and almost tip her towards her belly before her tummy started to drain. When I say "drain"...I mean on the radiograph you could see a whisp of contrast leave the stomach (like a gray fog) and it rolled into the duodenim and very slowly started to dye the small intestine. It was seriously a trickle and took forever to stain the small intestine enough for them to send her upstairs and wait for the rest of the bowel to stain!!! We had to leave her completely on her right side the entire time. She then had another abdominal x-ray to view the rest of the bowel.

So what did the dye test show?? ...Nothing! There is no obstruction or partial blockage. Truely this is a blessing as a blockage would most likely have meant bowel surgery! In fact we had a surgery consult just before going to do the dye test. I really didn't want to have to put her through another surgery, especially bowel surgery again! In some ways this is still frustrating as we just want/need a reason why all this is happening! The dye test did confirm that she definitely does have gastroparesis. Her tummy did not move, it is completely paralysed.

So where do we go from here? Our plan right now is to try the Cisapride. We have to go through Health Canada for this med. It is a controlled med. in Canada. There can be serious side effects to the heart. We have taken all the necessary precautions though and Kaitlyn does not match ANY of the risk factors. Our heart specialist had to sign off for this med. Kaitlyn will be monitored VERY closely and will have heart follow ups after she starts this medication. This is our last hope before choosing to do something more drastic.

Our choices if the Cisapride doesn't work are to leave Kaitlyn on TPN for the rest of her life. And yes, this can be done. It might not be optimal, and definitely isn't preferred. However, if she is followed closely it can be done. Our other option is to elect to put her through yet another surgery and place a fixed J tube. I am not in favour of a fixed J tube solely because I have read too much about them being uncomfortable at the least. Sometimes they are painful and there is no guarantee that if we did place the tube that her bowel is still functioning well enough to take in enough nutrition even through a J tube! Then we will have put her through another surgery for nothing :( This is the most frustrated and helpless I think we have felt on this entire journey that is SMA!!

October 7

So the new drug we were waiting for was denied!! That's right...the call came in yesterday that the new drug we were requesting release from Health Canada was denied! They wanted us to try some other motility meds. first before they would consider releasing the Cisapride. Our gastroenterologist wrote them back and told them why the "other" motility meds. wouldn't work and that he felt that the Cisapride (in his expert opinion) was the only med. that would work! Today the new med. was approved and it only put our schedule behind by a day! Thank goodness we have some good doctors here willing to go the extra mile for our girl!! Kaitlyn got the first dose of Cisapride tonight so we will see how it goes.

Kaitlyn's sats are a little lower today and HR is a little high. We had an episode last night that I am at a loss of words to explain??? She woke up whining (that high pitched there's something wrong whine). When I went to check on her she had a really high HR (170's) and there seemed like a little froth at her mouth. When I suctioned her (highly unusual for Kaitlyn during the night when on the vent) I got a TON of stuff out of her mouth!! Once I suctioned her mouth her HR went down almost to normal and she seemed to settle back to sleep. I didn't know what to think...did she vomit??? ....did she reflux??? ....had she perhaps aspirated some secretions??? I still don't know what to think!! However, all day today her HR was elavated and her sats were lower than the have been for the past three days. She had increased secretions today that were white and thicker than anything we pulled out of her in more than three days :( She is still on IV antibiotics from the aspiration pneumonia she is getting over. We may have to treat her for a few more days.

We have a chest x-ray scheduled for tomorrow morning. We wanted a healthy XR before discontinuing the IV meds. I guess we will have to see if something shows up! I really hope the Cisapride works to get her tummy moving. We are having a surgery consult tomorrow for a jejunostomy.

October 8

Tim came to the hospital early today. We have a meeting with our surgeon today to discuss a jejunostomy. This is a surgically placed tube (like a gastrotomy or G-tube) that is placed directly into the small intestine. This way we could feed Kaitlyn's intestine and by-pass her sleeping tummy! Our pediatrician came in on her day off to be party to the discussion :) We are blessed with wonderful, dedicated doctors!!!

Our surgeon explained in great detail ( : P Thanks Dr. B) all the different proceedures and types of J-tubes that "could" be placed; and then he explained the type of tube placement that he would choose for Kaitlyn. He recommends and indeed will ONLY place a Roux-en-Y Jejunostomy for Kaitlyn. I won't get into details to explain how this particular surgery is done, but state the name of the type of proceedure in case anyone is curious to do some research :P I would also be happy to answer any private e-mails to the best of my ability!

However, our surgeon won't even touch Kaitlyn until we have trialled all methods to get stomach feeds restarted! We have to trial Cisapride for a week. If the stomach is unable to tolerate feeds after trialling Cisapride then we will have an NJ tube placed. An NJ or naso-jejunal tube is a tube that is placed through the nose, threaded dwn through the stomach and into the small intestine. Our surgeon feels that this tube should be very safe for Kaitlyn even in light of her past bowel sugery and resulting scar tissue!! The NJ tubing is apparently a much softer more pliable tubing than the rigid GJ tubing! He WILL NOT place a jejunostomy in Kaitlyn unless we can prove that she can even tolerate intestinal feeds!! He always has our daughter's best interest at heart! If Kaitlyn can tolerate intestinal feeds and her paralysis appears localized to her stomach then he will place the Roux-en-Y jejunostomy.

If Kaitlyn is not a candidate for a jejunostomy then she will have to go home on TPN for the rest of her life. This would not be the best option for our family or for Kaitlyn!

October 9/10

We are into days 2 and 3 of Cisapride and I am happy to say that we have more bowel sounds and Kaitlyn's tummy is doing some growling that it wasn't doing before!! I sure hope this is a sign her tummy is waking up. We increased her feeds (unflavoured pedialyte) from 3mls to 4 mls on the 9th. On the 10th we increased her feeds from 4mls to 5mls. Five mls was the amount her tummy would shut down on before the Cisapride! She tolerated the 5mls all afternoon on the 10th. She was backed up a bit this evening, so we turned her off for a couple of hours to catch up. At bedtime we turned the pump back on at 5mls per hour and so far she seems to be tolerating the rate :) Fingers and toes tightly crossed we may have a minor breakthrough here folks!!

Kaitlyn had a repeat EKG follow-up today, standard testing for Cisapride use. Her heart will be followed closely during our initial use of this new medication. So far everything looks good :)

That's it for now....I'll keep you all updated!! 

SMA Blog Party! What is SMA?

What is SMA?

SMA stands for Spinal Muscular Atrophy. A disease my husband and I had never heard of until our daughter was diagnosed more than three years ago. Spinal Muscular Atrophy Type 1 (SMA1) is a genetic disorder that occurs in 1 in 4 children born to parents who both carry a recessive gene for it. (1 person in 40 carries such a gene.) There are five main types of SMA, type 1 being the most severe and the most common. SMA affects one in every 6,000 live births. This disease is degenerative and affects the motor nerves, resulting in muscle wasting and weakness. Children born with the disorder gradually lose strength in their nervous systems and become paralysed. The paralysis includes the chest and therefore Type 1 children die from repiratory related illness, usually by the age of two. There is no known cure or long-term treatment.

After learning Kaitlyn’s diagnosis we went home and researched anything we could find on the internet about SMA. The information was overwhelming for us and there were no options given to us from our local hospital about approaches we could take in caring for our daughter. There are really three options when caring for a type 1 child:
-Let nature take it’s course
-Using NIV approach (the method we chose for our daughter)
-Tracheotomy

Kaitlyn has been through a great deal in her short life. She has become dependant on machines to help her breathe, to keep her lungs cleaned out, to feed her, to monitor her 24/7, and to help her move. She has had four surgeries and was intubated for each. One intubation was for major bowel surgery to repair a torn and perforated bowel from a misplaced J-tube. Kaitlyn has never been intubated for an illness (a bit of a rarity for Type 1 children). She has a port-a-cath, an internal catheter, placed for venous access. She has a blood disorder that causes her blood vessels to form clots. She has two holes in her heart (also a bit rare, so we are told).

And in light of all this.....she laughs. Kaitlyn laughs because she is happy, because she is smart enough to know she has a reason....a right to be here! She is precocious, she is determined and she is strong. We adore how strong she is and how she never gives up (AKA stubborn). She is a joy and we are enjoying each and every moment with her!

But what would Kaitlyn wish for....what would she most want, if she could tell us? I think she would ask us for a cure. A cure for this horrible disease! She would ask each of us to do what we can to spread the word about SMA, raise awareness, and help fund a cure for SMA. Well guess what folks...Here's an easy way to help Kaitlyn in our quest for a cure!! Go to: http://www.voteforsma.com/ and vote for the Gwendolyn Strong Foundation in the Jimmie Johnson Helmet of Hope Contest as they are trying to win $20,000 towards a CURE for SMA. Please vote every day until the 29th of September. Ask your friends to join us in voting and feel free to join our blog party and tell your readers about SMA. You can talk about Kaitlyn :)

Thanks for your time, and happy voting :)

Kaitlyn Goes to Pre-school

Kaitlyn had her first day of pre-school today :) The entire day was packed with excitement! We started Kaitlyn's day early to finish her respiratory care before we had to leave the house. Tim did Kaitlyn's care while I got both boys ready for school and caught the live bird flying around in our living room. .....Wait a minute...did I say a live bird??? YES!!! I walked into the living room to see what had the cats all in a fit! Who was staring me back from the back of my couch but a real live bird!!! The poor thing was crashing into our big picture window in our living room and freaking out as our two cats were staring it down. The poor thing MUST have made it's way down our chimney! I have no idea HOW, but no doors had been open before I discovered him. Anyway, I got a towel and trapped him in the window. Then boys both wanted to see him up close and then I took him outside and he promptly flew away. He paused for a breather in a tree not too far from our deck, but was otherwise unharmed :) It's a miracle the poor thing didn't get hurt!

We made it to pre-school on time and Kaitlyn enjoyed most of her day. She liked the free play time first thing in the morning. I layed her on the floor with a pile of toys and a few of the kids came right over and started playing with her. A couple of girls in particular played for extended periods of time :) Kaitlyn can already say one of their names and was asking for her tonight after supper. She kept saying the little girl's name and then saying please!! Then she called for the little girl.....Oh Iya! Oh Iya! We played with playdough, built block towers, played with dinosaurs (STOMP, STOMP, STOMP...good times:), sat in circle time, painted a picture during group time, and "ate" a snack! Kaitlyn got to "eat" cucumber slices with the rest of the kids :) Then the worst part of the day was watching the rest of the kids line up single file to go out through a door in the back of the classroom that leads to their inaccessable playground :( We got to go outside and around the building to watch the kids play, but could not participate. I think we will have to use this time for something more constructive for Kaitlyn, as it was quite sad.

The plan is to attend pre-school two days a week for now and see how it goes. It is tiring and risky being exposed to so many germs, but to see our girl's face when she got to do what the rest of the kids were doing....priceless :) I am not sure if we will attend for the entire winter or not. I guess we will have to see how the winter unfolds.

We are Driving!

Kaitlyn's wheelchair has finally arrived! We have a custom pink bubble-gum paint job...custom seating...and very sensitive fibre-optic drive controls :) This has been and is going to be a learning process for all involved. Kaitlyn has been such a trooper through all of this!

Kaitlyn had her first try with the fibre-optic drive controls last week! Like a dummy, I forgot my camera :P I took some photos with my phone camera, but alas I have Vista and Vista does not like my phone :( LOL We had training session #2 today. We are having some minor issues trying to find exactly the right place to put the fibre-optic drive controls so that Kaitlyn can access the lights easily! She has so little movement left...even in her little fingers. With the fibre-optic lights all Kaitlyn has to do is interrupt the light beam with her finger and the chair will move until she moves her finger away from the light. She is doing well recognising that when she interrupts the light, the chair moves :) A little too well...LOL! Her OT was trying to get her to stop on command, and she would ask Kaitlyn to stop. Kaitlyn of course is looking all around and ignores the OT. The OT then corrects Kaitlyn by lifting her finger off of the drive control and Kaitlyn proceeds to holler at her :) As soon as we let her finger go you have to jump out of the way :) Move it or loose it!!!

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!