Eyes Like an Angel

This is a photo my cousin Sharon took when she came for a visit recently. After playing with the photo this is the copy she sent me. I fell in love with it and had to share!! Thanks Sharon!!


Kaitlyn just fell in love with her cousin! I haven't seen Sharon for a few years, our families sort of lost touch :o( Kaitlyn usually won't let people get too close, strangers make her nervous. However, the first thing Sharon asked when she walked in the door (I had Kaitlyn on my shoulder) was..."can I hold her"? I hesitated for a second but asked her to sit down and I'd hand Kaitlyn to her. This was the result...a number of minutes with both Kaitlyn and Sharon smiling and talking. In fact Kaitlyn wouldn't be quiet the entire time Sharon held her. She seemed to enjoy every moment...and she didn't choke!!!





Talk, talk, talk two chatty girls! I think fun was had by all!





Kaitlyn was checking out her cousin Owen!!! Yes Owen!! Sharon and I both named our first-borns Owen. It's so funny that we would pick the same name! Needless to say our families had lost touch for awhile!





Sharon and I! Can you see the family resemblance?





The boys all had fun too! Sharon's Owen is the same age as my twins. Three Little Monkeys Jumping on The Bed.....er trampoline!!!

The Many Faces of Owen and More.....

Alexander is such a good little guy. After getting a start on some of my morning chores I come out to find Alexander just sitting in the "cumfty" Spiderman chair just playing with his die-cast cars! He plays with die-cast cars, one in each hand, ALL day long!





Trying the floor out, but not willing to give up the chair! If his bum leaves the chair it might get snatched! (p.s. the red socks are in the garbage tonight...we are poor, but not destitute)

Kaitlyn playing with piggy and waiting for brother to appear around the corner!

Do Ya think she LOVES her brother!?!

The "Many Faces of Owen"! Owen is an entertainer by heart. He wanted me to take his picture while making all sort of funny faces. It was our entertainment while waiting to go for the mail. It's really sad, but living in an apartment building we don't have a backyard to send the kids out to break up the monotony. So trips down to the lobby to fetch the mail have become a family outing...if you will! It's the highlight of the day, even Kaitlyn has started fussing when we don't get our act together and get out the door quick enough to suit her!! So Owen's antics were a welcome diversion!!

In the elevator on the way to get the mail. The boys always have to bring something to ride on. Tonight it was their Bopper balls.

Kaitlyn gets to carry the mail back. She's the only one that won't wreck it or loose it on the way back home. The only issue becomes...how big of a fit will she throw when we take her letter from her when we get home!?! The girl likes her letters!!

Raising Fund's for Muscular Dystrophy

Kaitlyn's Grandmother has organized a fundraiser in honour of all the support Muscular Dystrophy Canada has shown our daughter in helping to get the equipment she needs to live a happier and better quality life. Muscular Dystrophy has been so supportive in helping to find funding to buy a few pieces of equipment for Kaitlyn. We have always been very grateful to their organization and this is one way for us to show our support in return.

Some of the things MDA has helped us get for Kaitlyn are her cough-assist device, her Enteralite Infinity feeding pump (with accessories), and a corner seat (specialized seating-supportive from head to toe). Thanks MDA!


This is only a pic of the poster that will be distributed around our home town, where the concert will be held. MDA supplied the posters for the event.

Ventilation

You can't have a conversation about Spinal Muscular Atrophy without the topic of ventilation making it's way to the surface. Lately we have been questioning Kaitlyn's ventilation and whether or not she is being ventilated properly, or rather if there may be more things we could be doing to optimize her ventilation. Sometimes it can be hard to find a pulmonologist who supports, or even understands, non-invasive ventilation (NIV). As Kaitlyn's parents we are first in line to advocate for her every step of the way. Ventilation is no different.

The very first appointment we had with a pulmonologist we asked about cough-assist and bi-pap. We had read that they only way for children with SMA (specifically the weaker type 1) to survive and have any quality of life was to use these machines. The only other options would be to let nature take its course and our daughter would not have lived very long, or have an operation for invasive ventilation (a tracheotomy). We were told that NIV and cough-assist wasn't done on babies as young as Kaitlyn was at the time of her diagnosis (5 months). When in fact it is, and some babies use NIV from birth. We did eventually start an NIV protocol, but not until Kaitlyn was 10 months old!

We finally asked a bunch of questions during Kaitlyn's more recent hospital stay. (Goodness knows we were there long enough to ask several people LOTS of questions.) The result was a meeting with Kaitlyn's pediatrician, the RT's at our children's hospital, and the RT from our DME company to discuss Kaitlyn's ventilation. The result of this meeting is that Kaitlyn will now be properly followed for her ventilation needs.

We have had to increase Kaitlyn's pressures on her bi-pap again. She is now 20/3. The left side of her chest has taken a little dip over the past couple of months and she had started peridoxal breathing again. Peridoxal breathing means that as she breaths in her diaphragm expands and her chest falls, and on the exhale the chest rises. Typically this means that pressures need to be increased to help blow open the lungs, expanding the chest, so that Kaitlyn won't have to use her diaphragm to breath. The idea behind the bi-pap is that Kaitlyn allows it to do most of the work while she sleeps so that she can get some true rest and not have to work so hard to breathe.

This meeting allowed my husband and I to ask some questions and raise some concerns. Kaitlyn is dependant on Bi-pap, of this there is NO question. All the medical professionals involved would have to agree. She may only use it nocturnally (except when she has the common cold where she uses it 24/7) but without it she would get too tired to breathe after only a couple of days. She might not even make it through the first night as children with SMA have such low tone that they breathe too shallowly in deep sleep to ventilate their own lungs and they could even stop breathing! So our concern is at what point is she a candidate for a secondary vent? Our DME company told us that if something were to happen to Kaitlyn's bi-pap that they might not have the same unit to replace it with, and they may not have a machine capable of performing all of the things Kaitlyn's bi-pap does now. Then we would be without a bi-pap until ours got fixed!! This is really scary!

The next issue is if we are considering a secondary ventilation machine do we go with another bi-pap or do we switch Kaitlyn to a vent (LTV or some other similarly capable unit). A vent has far more options for ventilation than a bi-pap. It can handle higher pressures, it can be volume cycled rather than pressure, it has a lot more alarms, and can be used for invasive ventilation should the need ever arise! During illness the vent could be huge for Kaitlyn! It would allow her to remain home long after the bi-pap stopped working for her. The bi-pap only handles a maximum pressure of 30, of which Kaitlyn is using 20. When sick, if we use similar pressure increases as colds she has had just this past winter, then we would have to go as high as 26-27. This doesn't leave us a whole lot of pressure for emergencies!

It's unlikely that a vent will be approved for funding. Vents are much more expensive than bi-pap. We have also recently been approved for funding for a secondary cough-assist. I am ever hopeful that the cost of a vent would be weighed against the cost of a two week stay in PICU!! It's in everyone's best interest that we get the equipment Kaitlyn needs so that we can continue to manage her at home. So this is what we will be wishing for the next few months. (These things take time).

Otherwise, Kaitlyn has been fine. She has been making some advances in the way of speech. She is experimenting with a lot of new sounds. She uses a lot more words throughout the day now. Still no sentences or even close to it, but she is at least mixing some real words with the nonverbal communication that she has perfected!! We've NEVER had any trouble understanding exactly what she wants (her nonverbal communication is superb)...probably why she has gone so long without speech!! Yesterday she was a train..."CHOO-CHOO". Pretty funny ;o)

Today Kaitlyn "decided" that she was going to wear her new Dora PJ shirt all day!!! There was no way that shirt was coming off this morning without a WHOLE lot of grief! LOLOL We compromised on the pants. Doesn't she look proud of herself!?!

My Goofy boys acting all silly. They were blowing rude noises into my leather couch...which they thought was incredibly funny!!!

The weather has been so nice the past few days. Sunny and warmer! We have been going for walks after baths before bedtime. Just around the outskirts of our building, but it's better than nothing. This is Kaitlyn all clean and waiting to go outside.

Those of you that follow me on FB may have read that Alexander fell this week and split his chin wide open. He was racing up and down the hallway with Owen. They were each pushing a large truck, racing and making tons of noise! I was yelling at them to stop when I heard....CRASH! Then Alexander comes out of the hallway crying with a big split in his chin. Poor guy, it was too deep for dissolvable stitches, so he has six stitches that need to be taken out. More than likely he will be left with a permanent scar. Sorry for the picture quality, he wouldn't hold still!! (The stitches are blue).

Ports and Plastic Surgery

We've had two more appointments in the past two days. And we are now followed by yet another discipline!! UGH! Our appointment Wednesday was with our general surgeon. Hands down a fantastic man! I really like him and he has pulled our little one through four surgeries now, one of which was a seven hour sugery he performed entirely himself to repair Kaitlyn's poor torn and lacerated bowel last summer, and he did her nissen then as well. That was the most exhausting surgery I want to have to go through until someday she needs something done about the curvature of her spine (which right now is fine). We went to see him about placing a port-a-cath in Kaitlyn. A port-a-cath is a tiny medical appliance that is placed under the skin. A catheter connects the port to a vein. The port then sits just under the skin and can be palpated and used for central venous access.

This is an example of a central venous access device.

What does this mean for Kaitlyn? It means that Kaitlyn would never need to feel another needle poke! A blessing!! The skin over the port can be frozen with a gel then a needle would access her port without her ever needing to feel another poke. Our surgeon told us that Kaitlyn does have other options for access, but they aren't good. He said he can still do cut downs in her right arm and he still has her external and internal jugular veins to use. He also has left her subclavian veins but doesn't feel as comfortable using these as there is a risk of puncturing Kaitlyn's lungs. He has avoided the jugular veins in the past saving them for future port lines he figured she may one day need. You see once these sites are accessed via cut downs they can never be accessed again, or at least usually cannot, the scarring prevents it!!

So what are our choices...not good! Kaitlyn's right leg is inaccessable for any lines. She has had a total of four veinous pokes and one arterial poke! She also has extensive collaterals in her right leg from past blood clots. Her left leg has been accessed a total of three times and has also had blood clots but we were able to save the leg for future access with four months of twice a day blood thinner injections. However the attempt to place a central line in the left leg this past hospital stay probably means that the left leg is inaccessable now too. Kaitlyn's left arm is inaccessable for any future lines! This leaves us Kaitlyn's right arm, and she would have to endure cut downs in order to gain any access. You see Kaitlyn has also been rendered inaccessable for PICC lines! CRAZY! This kid has the worst access of any other kid I know! We also have her external and internal jugulars which oce accessed cannot be accessed again! So the only option that makes a whole lot of sense is to have a port surgically placed so that we have permanent access to Kaitlyn's central venous system.

SO you might be wondering what's the big deal, why wouldn't you elect to save your daughter from future stress, pain, discomfort, physical and emotional trauma?? Well it's extremely risky choosing ANY surgery for a nueromuscular child. It also really sucks that we have to take our perfectly healthy daughter in and put her through more surgery. Ports also come with their own list of risks. And then we have Kaitlyn's tendency to clot. The last thing we need is for her to form a blood clot around this device and break off that close to her heart!!! Sooo....our next appointment is with haemotology for a discussion about blood clot control. Once we are reassured that we have a plan in place to deal with potential clotting then I feel like we will probably choose to place a port.

Our appointment today was with a plastic surgeon about the breakdown on Kaitlyn's right ear. She has had this breakdown since December and while we have been attempting to treat this condition, until just recently we weren't having a lot of luck. It wasn't until I made Kaitlyn some ear pillows that she really started to heal. Now she never goes anywhere without one of her little pillows! The surgeon didn't have any further suggestions except to keep off-loading on that side :oP But he did think that our idea for the pillows was the best solution for keeping pressure off of her ears. YAY!

These are the ear pillows that I made for Kaitlyn. They help keep all the pressure off of her ears.

Lazy Weekend

Not too much to report from the last few days. Everything's been pretty quiet! The kids had a good Easter weekend. The boys went down to the Valley (two hours away) to visit with Grammy and Grampy. They had a blast! They love going there as they get to go outside and get to do activities that they wouldn't get to do at home. Daddy brought them home on Saturday so that they wouldn't miss the Easter Bunny gifts Sunday morning.

The Easter Bunny found them all. Kaitlyn got mostly clothes and a couple of teeny stuffed bunnies and a stuffed pink chick! This girl is nuts about stuffed animals, but they have to be animated by someone!! But the resulting giggles are worth the extra work to help her play! Owen and Alex got some CARS DVD character cars (they are nuts about die-cast cars, especially Alexander), some chocolate and goodies, new hats, Owen got a truck and Alex got a Bopper Ball. Everyone was quite happy with their gifts.

This is an older pic. I've had it for a few days, but I had to post it as it was such an AWWWW moment! These boys are glued at the hip. I hope they are always this close! Owen was showing Alexander some of his favourite things on the computer. Owen says, "do you want to see this little Buddy?" He's an AWESOME big brother....well, most of the time!



Kaitlyn likes to watch the boys playing on the computer. She can play her own games but it is getting so that she likes watching them play because she cannot play the same games as them! It's so sad sometimes as I feel like she's being left behind. The games out there for single switch are obviously not very challenging!! She gets too bored. But communication devices are extremely expensive and I am not aware of any funding porgrams that will cover communication devices.

Kaitlyn enjoying a taste of Daddy's bacon Easter Sunday. She thought it was pretty funny to bite down hard so that Daddy couldn't pull the bacon back out of her mouth. Good thing she didn't bite a peice off!

I gave Kaitlyn my popscicle stick, she wanted it REALLY bad! LOL So I let her chew on it, which she thought was pretty funny.

Even more hysterical was when she bit down on the stick and it bopped bunny in the chin flipping his head up and down. Too Funny! She got the closest to an outright giggle I have seen in a while.

Growing!!

Where does the time go!?! I had to give the boys a hair cut the other day. Everytime I have to cut their hair I feel like I age them several months each! Don't you find when they get hair cuts that they look older?? Tried to take some pics for all to see.

Attempt number one at a nice pic! BRATS!!

They of course thought it was funny to vex Mama! They were sharing a laugh!

I think this was the sixth shot....not too bad! LOL

We measured how tall the kids were the other night. Owen is almost 44 inches tall and four years old. Alexander is 35 1/2 inches tall and 2 years. Kaitlyn we have to try and stretch out her contractures in her knees to get something even close to her full height!!! She measures 37 inches tall and 2 years!!! She's always been bigger than Alexander but WOW! I cannot believe how tall she is! Kaitlyn doesn't get haircuts, but i thought that I would take some pics to document her growth as well.

One for the camera!!

Look how crazy long my hair is!! Check out those natural highlights! Bet you're jealous!!

She's getting to be quite an armful for Daddy!