Tuesday, June 23, 2009

Under the Weather

Kaitlyn has been under the weather the past few days. I haven't had much time to post about it as Tim and I have been busy doing therapies around the clock. She started with increased secretions and a bit of a temp. last Thursday evening. By Friday morning she was pretty goupy and had a temperature. Secretions were pretty bright green (reminiscent of our pseudomonas days!). Anyway with the color of the secretions, how fast this all came on, and the fact that nobody else was sick made up our minds to start her on an antibiotic. We did send in a sputum sample for culture, but haven't heard back yet. Hopefully I'll remember to call and get our ped. to find out tomorrow!! We started her on Cipro. which is a pretty broad spectrum (pseudo-killing) antibiotic. Hopefully it'll do the trick!
She still has wet lungs even today! This is just sort of hanging on! I was hoping that she would be all better by Wednesday as we have a neurology clinic. But even if she makes a remarkable recovery overnight, there will still be residual increased secretions on Wednesday. I guess she will have to do her first clinic bi-pap dependant!!! What a long day that will be for her. Thank goodness we are fully mobile for powering all of her equipment!

My boys are coming home tomorrow. They've been having an extended weekend with the grandparents so Tim and I could focus on Kaitlyn. Perhaps once they're home Kaitlyn will get better faster....she really dislikes missing all the fun (can't "run" through the house chasing boys while attached to a machine and moving around too much makes you choke!!!).

I cannot believe how big my girl is getting. I remember the days when she would sleep at the bottom of our bed (when sick) and there was still enough room for Mommy and Daddy. Not anymore!!! Daddy gets to sleep on the couch now!! SHHHH...She's sleeping!

This one is of Kaitlyn holding her magic wand that Lexx and Ayva sent her from Alberta. She LOVES it, and particularly loves when the air from the bi-pap mask blows the wand making the little sparkles flutter! She is also making good use of her new Z-flo positioners that Karah sent me from Kentucky!!! Thanks Karah they are keeping my feet in a better position while I wait for my new AFO's!!
Having a taste of Daddy's salad. She fussed when Daddy tried to give her anything but greens!! She licks and licks and licks....saying, mmmmmmmmm!
Alex never has a nap anymore, except on rare occasions when he wants to be held and then "conks" out. Look how big he is getting!

Sunday, June 14, 2009

2009 Halifax Walk for Muscular Dystrophy

We went to the 2009 Halifax Walk for Muscular Dystrophy yesterday (Saturday June, 13). We have been wanting to go to an MDA function now for quite some time. It always seemed like there wasn't the opportunity in the past or Kaitlyn was sick. This time everyone was healthy, we had a good day to go, and we all had a great time.
It's nice to be able to show our support to such a wonderful organisation. Kaitlyn's picture was in the 2009 brochure for the Walk this year. It was a lovely honour and we were glad to be able to join them. Tim was able to raise a little money through sponsors for the Walk. Friends of ours donated both monetarily and of their time for the occasion. We were glad for the company! Thanks Dave, Amanda, Ryan and Emily! Tim and I would like to thank everyone else who sponsored our family for the Walk. It means a lot to us to be able to give back a little of the money that has been provided for Kaitlyn by MDA to buy essential medical equipment! As always we are grateful for the support!!

The boys and Kaitlyn had a good time. The Walk was led by the 33rd Halifax Pipes and Drums. They are a marching band and the kids LOVED the loud music! The band led us down the Halifax boardwalk along the waterfront. After the walk the kids all played at a playground on the waterfront. Fun was had by all!

When we got home we noticed something awful! Kaitlyn has sunburn!!! I felt awful. She has such fair sensitive skin. We put sunscreen on the kids, but I meant to pack the sunscreen and put on a nice thick coat just after we got there. Well the sunscreen got left at home! Poor Kaitlyn paid the price. We didn't have the canopy up on her stroller because Kaitlyn likes to see EVERYTHING and the weather was overcast most of the afternoon so we really didn't think anything about sunburns!!! The kids were in fleece coats most of the day too. It was nice, but not hot!

Some pictures from our day:
The kids on the board walk.

33rd Halifax Pipes and Drums
Kaitlyn getting her T-shirt for the walk.
Kaitlyn telling me something...she talked continuously while we were out. She was in a reall good mood. The breeze was blowing and she just LOVES the wind!!
33rd Halifax Pipes and Drums lining up for the Walk.
Photo opportunity after the walk!! SAD but I think this may be the very first family photo we have ever had taken!!!
Kaitlyn's sunburn!!!

Thursday, June 4, 2009

No News Is Good News!

Oh my goodness! I didn't realize how long it has been since a posted! OOPS! But the good news is that there really hasn't been much to post about! No news is good news.

So we had a head cold go through the house two weeks ago. Alexander started with a runny nose after getting back from the grandparents' the week before. I thought that it could be just allergies, but then the sniffles didn't seem to go away. Then he got pretty stuffy. When Owen woke up one morning with a swollen and red eye and a runny nose....well then i knew that we were dealing with a cold. Try as we might, it is almost inevitable that Kaitlyn is going to get the cold once it is in the house.

When Kaitlyn gets a cold it always seems to hit her really fast. This time was no different. Kaitlyn was presented with increased secretions one afternoon. Increased secretions make Kaitlyn choke as she has no mechanism to protect her own airway. Kaitlyn lacks the ability to use her tongue to gather secretions and prepare them for swallowing. She also has a highly unpredictable swallow. Sometimes she manages to gulp saliva down the esophagus and sometimes she aspirates saliva into her trachea. This causes her to choke and sputter gasping for air, as she also cannot cough!! Imagine what it's like when you swallow something when it goes down the wrong pipe...we've all done it! Now imagine that you cannot cough that aspirant back up. Not only does it hurt like a beast, but you cannot breathe either. That's what it's like for Kaitlyn. We have to sit next to her when she is sick and suction her fairly constantly. If we didn't she would choke! I have a point to my little story.

The morning after presenting with increased secretions Kaitlyn gets up and secretions are still increased and are now thicker (common with a cold), secretions were colored, she had a fever, and she couldn't stop gagging and choking. So she became bi-pap dependant. Her sats were perfect but she could not tolerate even a very few minutes without choking/gagging. Kaitlyn gags on thicker secretions. Our concern at this stage is that if she aspirates enough saliva she could get much sicker! She could even develop pneumonia or end up hospitalised. So by placing her on bi-pap she is then able to spit out secretions making her a whole lot more comfortable and easier to manage. We are protecting her airway by putting her on her bi-pap. Kaitlyn is old enough to "get" this now! She smiles at us when we ask if she wants bi-pap; she is agreeing that she wants the additional support and security that her bi-pap can provide. We also increase Kaitlyn's breathing treatments to help clear her airway. After three days of pretty continual bi-pap she was able to come off and slowly we were able to reduce her treatments to her normal routine.

Last week we went to the hospital for an overnight stay. Kaitlyn's pediatrician and the RT department wanted to monitor Kaitlyn's O2 sats overnight and have her blood gases checked in the morning. Her O2 sats didn't budge from her normal 99-100% all night! Heart rate was nice and low too....she slept like a baby ;O) I'm so glad that our children love sleep, and that Kaitlyn can go to sleep anywhere as long as she has her bi-pap, her guys (the stuffed animals she sleeps with), and of course her MaMa!!

We've gotten outside on a few occasions just around our building. But at least it's outside! Kaitlyn LOVES the outdoors. She could spend the whole day with the wind blowing in her face. She squeals and squeals!! It's pretty funny.

Now for some recent pics!! Having fun with Daddy!!

Don't ask me what Owen was doing!! Eat or be eaten!?!

Alexander's fake cry face!! It looked even more convincing a split second before this was taken! You can see the beginnings of a smile in his eyes!

One of Kaitlyn's special little grins! This one reminds me of Leah!!
This was Kaitlyn's first B4SMA babies blanket. Kaitlyn was only just diagnosed when she got this blanket.
This is Kaitlyn's NEW B4SMA blanket!! It's HUGE!! Kaitlyn LOVES it! Thanks so much MJ :O)