Friday, February 27, 2009

Waiting for an End to Cold/Flu Season!

Sorry I haven't posted in awhile. I guess I'm just lazy! It's those winter blahs that hit this time of year. I'm really getting ready for some nicer weather and the END of cold and flu season!! Friends of ours have been sooo sick, the whole family! Especially their four year old son, who also happens to be Owen's best bud! They go to the same pre-school and Owen really misses him and wants him to come over and play! The poor little guy had RSV (with pneumonia!) and then got hit with a stomach flu. He's lost some weight and has had a hard time keeping enough fluids and food in his belly. It has occupied my thoughts for days now!! We really hope that the little guy and his family will be on the mend soon!!

Everyone here has been well. No news is good news...right! Kaitlyn has had some odd secretions, by times seeming thicker than normal, other times seeming pretty dry, and then sometimes I look over and she's drooling! CRAZY! She's just keeping us on our toes. In spite of all this she is fine and not acting sick or like there is anything particularly wrong. In fact, Tim and I have both commented recently that she seems to be more communicative lately. She's even making an effort to say two to three word sentences. My favourite....."I laaaaAAA Dora"!!! (LaaaAAA is love in Kaitlyn speak)

Today I asked her if I could lay her down that my arms and back were sore and she shook her head no!! LOL I've never seen her do this....and she was all grins while doing it, and looking like she knew EXACTLY what she meant. Raising her eyebrows with an impish grin like she was challenging me to disagree!! I asked her several times and got the same answer every time. She has been wanting to be held A LOT lately. I think that she likes the change in perspective and she seems to tolerate her secretions really well when somebody is holding her. We place her in a sitting position in our lap and hold her head in our hand. This also allows her the freedom to turn her head from side to side, which is how she was able to turn her head from side to side to tell me NO.

I think sitting up more may be encouraging her to communicate, but unfortunately she is so heavy and cannot help support any of her weight. We haven't any specialized seating that we can put her in. Kaitlyn needs full body support in order to sit up. We would need specialized seating with a lot of support, a TLSO(body brace) and some sort of specialized head and/or neck support. Of course these things cost money. Currently we are still trying to get her into a power chair. It's been a year and counting! This would be huge, did I say huge, for Kaitlyn. She really needs to be able to follow her brothers, make some of her own choices, get up off of the floor and start living a little!!

This is Kaitlyn sitting up playing a computer game. She tolerates this really well some days. But we cannot do it for long, only a few minute at a time, as her body is not supported properly.

Sunday, February 22, 2009

Petition Video

A college student from Michigan recently made a video to promote This student is unrelated to the SMA world but was inspired by our children and their fight for a cure! There really are some truely remarkable and selfless people left in this world. This is a fine example!! Watch close and you will see our girl......perhaps she and her friends will inspire you to sign the if you haven't already!

Monday, February 16, 2009

Blanket Pulls

This is one of Kaitlyn's favorite things to do!! She loves it...listen close you will hear her laugh!! I think she would do this all day long if she could convince someone to keep it up!!

Sunday, February 15, 2009

Valentines and a Mirror!

Happy Valentine's Day everyone! Sorry for not posting in so long, but not too much has been happening around here lately. Tim and I are pretty much over our head colds. Friends of ours came down with similar symptoms as us only ten-fold! They've been pretty sick. Their youngest had croup and the oldest a fever for a week. They took him into ER and he has pneumonia! Poor little guy. We sure hope they start feeling better soon! There are also a number of SMA children in hospital sick right now. A discouraging number of them with RSV. Thank goodness for our RSV shots every month! While the shots are no guarantee they are better than nothing! We are hoping that these families are reunited very soon. It's harder than you can imagine to be separated from ones loved ones and they from you! Especially in light of the fight that takes place within the hospital walls to save the life of your loved one!

Enough about hospitals and illness. Tim took the boys down to the grandparents for the weekend. It's a two hour drive, which was blizzard part way today. They get to play with grampy and go outside! They always come back with stories to tell. Kaitlyn and I painted a couple of pictures and read a couple of books. She adored both activities! She loves all the undivided attention but you can really tell that she misses all the activity and commotion when the boys are gone. We went for a couple of short walks today with her on my shoulder. This is her favourite spot to be, but she's really getting too heavy (and big) for this now! But boy does she enjoy going for walks. She sings the entire time :D

Kaitlyn has a little mirror that she LOVES to use to see areas of the room behind her. She can turn her head a bit but the movement is really hard for her and takes a lot out of her. This is the face she gets when she can hear somebody coming but can't yet see them. She was watching in the mirror for Owen! Scroll down and see what he does that she LOVES so much!!!!

Owen is such an amazing little guy!! He totally gets Kaitlyn and how to make her happy! It's a special gift he has, and a special kind of love for his little sister!

Saturday, February 7, 2009

First Cold 2009 Update

Oh my! What a week! Tim and I have been hit pretty hard with this cold. Thank goodness it has all been in our head and throat!! The kids are pretty much all better, except when they get tired...then they have a few melt downs. Kaitlyn just has some residual secretions, but is otherwise her same old self.

Kaitlyn is turning into quite the bossy two year old! She is getting more and more particular about how she wants things. If you don't hand her the right sticker, doll, small toy....meltdown! And whatever you do...Don't take away anything she has in her hand!!! She throws a fit when we take something out of her hand...I think she thinks that we are snatching! Like anyone has ever snatched things from her!! Her brothers are VERY good to her...they've never made a point of snatching anything. They are usually the ones that give her things.

The funniest thing she has had meltdown over recently was a receipt. Yes you heard right..a receipt from the future shop I believe! Owen was out in the livingroom with a receipt (of all things!?! It's not like they are lacking in the toy department!!). He was throwing it up in the air and it was spiralling down to the floor. Kaitlyn thought this was just the funniest thing. And of course Brother is the "Apple of her Eye". She absolutely LOVES Owen! Anyway, sometimes he would blow it and it would make noise and stream across the space where she was laying. :O) Good times were being had by all!!! But then the fatal mistake! Owen placed the receipt in her hand!! She threw a FIT when he took it out of her hand to continue the festivities!! It was close to bedtime and we couldn't risk her getting all choked up! There were big crocodile tears, runny nose...the whole deal!! Once she had the receipt back in her hand she was fine. Then Daddy comes out to put her in bed...repositions her and the receipt falls out of her hand. He starts looking for what's wrong..checks her g-tube, checks her limbs, suctions...pauses thinking! :o) <-- ME! I said she wants that receipt laying there! He looks at me, really. He puts the receipt back in her hand...then :oD. Laugh! She took the receipt to bed with her. The morning nurse thought that it was pretty funny that she had a receipt in her bed the next morning!

Hoping for a quite weekend for us and all our SMA buddies! Sending healing thoughts for Jacob, Vivianne, Lauren and Kyle, Hayden, Van, and Mary! Get well soon ALL!

Kaitlyn and Daddy having a discussion on the couch! I wonder who was lecturing whom?? LOL She looks upset but she was just concentrating on what she was "telling" Daddy ;O)

Here's one for the Camera!! She's still a camera Piggy!

Tuesday, February 3, 2009

First Cold of the New Year

Well we have our first cold of the New Year! I thought that we were going to get away with just a low grade fever and a couple of sneezes. Owen is still fine. He had a bit of a dry cough today, no fever and is otherwise fine. Alexander's fever was gone this morning and he was acting much more himself today, but he too has a bit of a dry cough. Alexander has a bit of a runny nose and is quite tired too. Kaitlyn needed a full treatment last night at 1:00am and had a low grade fever. She woke up this morning with increased secretions, lungs are clear, but the low grade fever was still there! We got lots out of her during her morning treatment. She's been fine all day. Hasn't needed any extra bi-pap time, no major desats, just lots of suctioning and an extra treatment through the day. She's still in a good mood too! Probably because I had to sit next to her the entire day so that I could suction. She loves it when she has my undivided attention! And she loves hollering at Daddy for his! LOL!

Hopefully this is the worst that we will see! She has been good alarms!! Always a good night when things are quiet. Sats are great but heart rate is slightly increased probably from the low grade fever.

Kaitlyn Paying with Her Brothers Monday.

Monday, February 2, 2009

Results from Round Two Serial Casts!

I got to see early what round two of serial casting has done to Kaitlyn's heels! The casts got wet last night when I gave Kaitlyn her bath. Tim wasn't going to bath her, but she needed one, so I dunked her and got her casts wet :O( I guess I'm not used to controlling those long limbs!

Round two of serial casts has left her heels with breakdown again!!! Both heels look bad this time. Is it even worth it?! Well, her ankles are pretty much contracture free and Kaitlyn really doesn't seem to mind the casts at all, or the breakdown for that matter. She's a brave little girl. I still think the breakdown is preferable to surgery to cut her tendons. The surgeon told us that cutting the tendons is painful, at least when the tendons are actually cut!! I don't want to be the one to cause her more pain. I think that I would rather let her ankles contract than to put her willingly through more pain and suffering.

Owen's fever didn't amount to much. It was gone on Sunday. Kaitlyn had a great day Sunday, no real issues at all. Today Kaitlyn has had increased secretions. I've had to sit next to her with suction ready all day. Secretions got a little worse after her nap this afternoon and increased a little before bed. She's sleeping soundly now. The alarms have only gone off twice so far. Her lungs are clear so hopefully she will get a good sleep tonight and feel better tomorrow. She hasn't had any fever yet.

Alexander on the other hand has a fever tonight!! He was feeling absolutely miserable before bed. He fell asleep in my arms after supper (he NEVER does this)! When he was all ready for bed he was playing nicely on the floor with a toy. He got so sleepy he pitched forward onto his nose on the laminate flooring. He cried and any other time I would have busted my gut laughing but the poor little guy was so pathetic!!

Warning: I've attached some pics of Kaitlyn's heels. Remember, just like last time, there is some breakdown and they don't look too pretty but she isn't bothered by them at all. If you mind this sort of thing you might not want to look!

Breakdown on Kaitlyn's Left Heel.

Breakdown on Kaitlyn's Right Heel.

Gain from First Casting...Left Foot.

Gain From Second Casting...Left Foot!

Gain From First Casting...Right Foot.

Gain From Second Casting...Right Foot!

I'm sooo glad that we took photos the last time!!! It really makes the world of difference to not only know that we've had some gain, but actually see the difference!! I thought that the last gain was huge! I'm very pleased with how the casting has worked. Except of course for the breakdown on the heels. Something that we would obviously like to avoid, but at least she isn't in any REAL pain!