Kaitlyn Hatchard (Spinal Muscular Atrophy-Type 1): 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 :)