Wednesday, May 13, 2009

Fresh Air and an Ambu-bag

Things have been so quiet around here lately that I haven't had anything to write about. This is a good thing in the world of SMA. Today was a beautiful day out! Sunny and warm. I cannot take all three children out by myself (not with Kaitlyn requiring constant monitoring), but we did all go out on the deck to get some fresh air and sunshine! Kaitlyn and the boys had a blast. The boys antics amused Kaitlyn and she kept saying, "". We live in an apartment next to a highway...lots of traffic!

Kaitlyn's RT from Vital Aire was by this morning to drop us off an ambu-bag. We've never had one in the house, and while I have seen ambu-bags used many times before, I have never actually picked one up myself. Learning how to use an ambu-bag isn't hard, and we now have a little more freedom, and an extra tool to help if we need it in an emergency.

This is a picture of Kaitlyn relaxing in the fresh air. She was sitting up in her big girl chair, which she has really outgrown!!! Her shoulders are up past the back of the chair! But she did fantastic. She sat up for an entire 30 mins. without choking, and although I suctioned her several times I didn't get anything worth while.

My cool cat, with her purple sunglasses and killer long blonde hair.

Alexander discussing "big trucks" with his sister...."Did you see that yellow cement truck Kaitlyn?"....."Did you see that blue dump truck Kaitlyn?" Followed by big kisses!!

Tuesday, May 5, 2009

Back-up Cough-Assist!

Remember when I said that we were fighting for a back-up cough-assist?? Probably not, it was so long ago!!! Well yesterday we finally got our new cough-assist!! This is HUGE for us. Another small battle won. We didn't even really have to fight very hard. We requested, gave valid reasons why we needed this essential piece of equipment, and have a very wonderful social worker to help advocate for us....and the rest is history!

The machine was funded by the government and we are very grateful to have it. Without the cough-assist our daughter might still be alive but NOT without a tracheotomy (a tube placed through her neck into her lungs and attached to a ventilator 24/7). Not that I have ANYTHING against a trach. but for now Non-invasive ventilation and protocols are working very well for us. This secondary machine means that if something happens to one of Kaitlyn's cough-assists then we will ALWAYS have a back-up. Our children's hospital has only ONE cough-assist and NO plans to get another. The machine is so poorly understood!

We use Kaitlyn's cough-assist several times a day! Three times a day we do CPT (chest physiotherapy) followed by cough-assist. We also cough Kaitlyn before we place her on bi-pap. So that's 5 times a day we use the cough-assist on schedule. When she has increased secretions from a cold or flu, then we have to cough-her more often. I have had to cough Kaitlyn every few minutes for several hours in a row to help her get through a bad cold. When she is sick she is chained at the hip to this machine (so to speak). We also use the cough-assist anytime that Kaitlyn chokes on her own saliva, or throws a plug (this happens quite frequently).

The second cough-assist will also make our lives a lot easier as we can leave one machine always loaded on Kaitlyn's medical stroller/wheelchair. This will cut our packing to leave the house in half...maybe more!! The cough-assist barely fits on the stroller, it's a pretty tight squeeze. Loading and unloading the machine takes a lot of time.

This is a picture of Kaitlyn's cough-assist. It's a rather large machine (11.5 X 11 X 16.5 inches and weighing in at 24 lbs).

This is Kaitlyn's Medical Stroller/wheelchair. The cough-assist is the BIG grey box-like thing underneath Kaitlyn's seat towards the front of the stroller.

A well loaded down stroller. Cough-assist, inverter, gel cell battery, oximeter, bi-pap, DVD player, and feed pump. Suction we either carry or hang from the handle bars! (phew!)

A picture of Owen and Kaitlyn this afternoon. He just absolutely adores this baby girl. They were laying together watching Diego DVD (yes...that's right...I said Diego!!! It's the ONLY other acceptable programming allowed on Kaitlyn's DVD player!)

Monday, May 4, 2009

A Day Out!

This weekend we went to a friends house for a BBQ lunch. Saturday was over-cast and rainy, but Sunday turned out to be a decent day! There were still some scattered clouds, but it was warm and reminiscent of summer days yet to come.

Because our friends live in their own home (not an apartment like us) they have a room devoted to toys (:O) like, like, like!) and a backyard! Our boys and Kaitlyn had a blast. All of our children just love the outdoors. Kaitlyn really loves the breeze blowing through her hair, she laughs and laughs! She also enjoys the swing set. I hold her and swing and she just loves it!

It was very nice of our friends to invite us over and to have us for lunch. When it was time to go Owen didn't want to leave, so our friends offered to keep Owen longer. Needless to say Owen was thrilled. He LOVES the outdoors and didn't want to come home yet. They offered to keep Alex too, but Tim and I thought that would be a little much yet. Alexander is only two, and while I think that he would be alright without Tim or I there, he is definitely a little more work!! Owen is a pretty self sufficient little guy.

Here are some pics of our day:

Kaitlyn in the playroom watching the boys. She was laughing just before I snapped the shot.

Alexander having a quick break.

Owen pressing all of his "controls" LOL

The swings are a huge hit!

This picture is dark, but Kaitlyn was loving the outdoors!!! I just wish we could get her out more often!

Owen and his ride-ons!!

Alexander, wasn't unhappy just squinting over the sun...I guess I should have remembered their sunglasses!

Owen and his best bud raking leaves! They were having so much fun!

Our friends' youngest! She was having a real blast playing in those leaves :o) Isn't she adorable!