I'm Walking on Sunshine

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It's hard to sleep in the sleep lab!

Ashley reported to the sleep clinic last night tired and ready to sleep that was before they started hooking her up to a million and one probes. They were monitoring her heart, lungs, brain activity, movement and even the amount of carbon dioxide she was breathing out while sleeping. It took about 40 minutes to get all the probes on. She had these probes glued to her everywhere from her head to her toes she was not pleased about any of this and I'm sure was wondering why i brought her here and was standing by trying to sooth her by reading books and singing to her which was not working.

Luckily she was tired enough and likes her sleep that she settled down to sleep after about 30 minutes of loud complaining. After about an hour or so the sleep technician came back in to move the oxygen saturation monitor from her toe to her hand as it wasn't reading accurately that woke her up and she cried again for another 30 minutes my poor little one. She also woke again around 2am for another 30 minutes. Then at 6 AM sharp the technician came in to remove the probes and wake her up.
All in all not much fun i don't even think an adult would like kind of sleeping arrangement and at least an adult would understand.

This morning instead of being at pre-school today she was in bed napping and slept the entire morning. I was tired too.
Good news is everything looks good according to the initial report and so i hope we won't be doing that again soon.

Here's her picture taken at 6:30 this morning already smiling for me. Her hair is a little wild from all those probes. She's still my cutie.

Eating!

Ashley enjoyed a whole egg yoke and a little pancake for breakfast this morning. This is a whole lot of food for her. She is getting less g-tube feeding as her system is still recovering from the stomach flu she had last week. That has the desired effect of giving her an appetite something she doesn't have when she is normally being g-tube feed 1100 calories a day.

The same thing happened last year after she had vomit fest 2008 for 8 long days she start eating but i slowly increased her g-tube feeds and she eventually didn't want to eat anymore. I'm going to see if i can prevent this mistake this year as I'd love to see her take up eating.

New AAC device - Tech/Talk

Ashley new talking device... The Tech/Talk

We quickly determined the SuperTalker wasn't going to work for Ashley as she didn't have enough pressure to activate the buttons. Our CDA suggested we try the Tech/Talk Communication Device by AMDi. Ashley just needs to touch the buttons and they speak.very little pressure is needed it's great for her. Right now she is just using it tell mommy when she wants a new toy or to change activities . We also use it for reading books she has buttons which read "turn the page" or "Read it to me" we wanted the buttons to have no fail messages. I leave the Tech/Talk beside her when she plays and she is very please when i come over and bring her new toys on request or read her stories. I think it's going well I'm trying to create a new panel of options for other activites such as colouring, sit'spin, walk in the walker or ride my bike.

This device cost $440 - $1000 US depending on how many panels we want to preprogram. It's really not all the fancy for that price. My ipod touch does so much more and is only $200. The Canadian government will fund 75% of the device but they will only fund one speech device every 5 years so she will need to use this until she is 8 years old. Some parents purchase these lower end devices themselves in the hopes their child will need a more sophisticated device in the next few years and you would want to access the funding for a more expensive device. Not really sure what approach we should take.

I would love a device for Ashley one way or the other.

I'd love something like the Dynavox m3 or theSpringboard Lite by PRC. These are really pricy devices $2,000 to $8,000 and up for the super fancy type the gov't doesn't fund these in canada unless the kids are closer to 7 or 8 and they have to demonstrate they are very good at low tech devices before they want to spend money on these kids. Another pet peeve of mine.





I think younger kids should be given a chance with the best technology to express their emotions, feelings, wants and thoughts in order to maximize relationships with family and friends from as early an age as possible. I'd would love to know what my Ashley is thinking ever day!!!

On the mend

Ashley is on the mend today, yesterday Ashley had more energy and played with toys but got sick twice so she is still keeping a low profile and stayed home from school today. I'm pretty sure she lost some weight but i decided skip putting her on the scale to verify that.

Sleep Study:
Sickkids Hospital called and asked me to bring Ashley into their Sleep Lab monday night for a sleep study we are to arrive at 8pm and it will take an hour to hook her up to all the monitors then she is to sleep until 6am. I hope it goes well, she sleeps and we don't get any bad news. Her cardiologist requested this test last summer after reviewing her echocardiogram and expecting better results. I'm happy they called as this appointment was set for mid April originally and i would have had a new born or worse been in labour.

Still fighting off a virus

Ashley still fighting off the flu of some sort. She has not been sick to her stomach since friday and is managing to tolerate her tube feedings but is doing not much but sleep these last few days away. Yesterday and today she spent much more time napping then awake and slept thru the night too. I really hope this will be gone tomorrow.

Losing Baby Teeth

My Damon lost two teeth this weekend. This is his beautiful new smile. He seemed to misplace both teeth some how but he wrote the tooth fairy a note to explain and she may locate one tooth under the coach and the other one in his room somewhere and she was nice enough to leave two toonies. He was thrilled with the $4.

Valentines Treats

It's been a bit of a rough valentines day as Ashley has come down with a case of the dreaded stomach bug. It started Thursday night and has been sticking around. Ashley missed her activities the last two days in replace she slept or was just pretty miserable for the most part. My poor girl. Last year she also came down with vomit fest and it stuck around for 8 terribly long days and she managed to share it with all of us. I pray this illness will go away much quicker this time around and not spread to her brothers or me.

Ashley managed a smile for this Sesame Street valentine she loves Elmo and Cookie Monster


Damon devoured these yummy Carmel filled kisses!


James and I enjoyed these Reese's Peanut Butter Cup....so yummy!!


I hope your enjoying some yummy treats as well.

Baby of Mine - Ultrasound

Today I had my 30 week check up which included an ultrasound of our little one. Everything looked good baby is about 3 lbs already and everything was normal. We got this great photo of his/her little face.



They did tell me that our baby is breech right now but it's still very early and likely that will change. I have to go back in two weeks looks like the frequent doctor visits are starting. Just 9.5 weeks to go. Little one we are so excited to meet you, hold and cuddle you.

A bunny moved in.

My boys were delighted that a bunny has made himself a home in our backyard. It has been mild the last few days and all the snow we had quickly melted away. Our new friend is very comfortable under the cover of our backyard playset.

A Tribe Award for Damon

Damon Mommy and Daddy are so proud of you!

Today Damon told me that there was a note in his bag I needed to read right away. I open his backpack to find that he had received a Tribe award for the month of January. Tribe awards are given to students that meet four agreements for the month by showing mutual respect all month to teachers, peers and things, appreciated others, participated and listened attentively. This is Damon second Tribe award this year he is natural at most of those skills enjoys school and has little trouble meeting these expectations. Damon you are so sweet and so much fun. I love you.

New Door

Here's a pic of our new storm door something my husband I treated ourselves to this Christmas. Home Depot finally installed it last week. It's so nice to look out at the trees the view will be even better when the snow is melted and tulips are blooming. Still dreaming of spring. It has at least warmed up this week to much more comfortable +6C. A nice 10 degrees above average for this time of year.


My new front door


Here's a pic of my big boys

Little Toes

Ashley had a great day today she enjoyed "The Little School House" this morning and all the Valentine activities. She mailed valentine letters in pretend play and made cupid and heart crafts. She loves getting the glue all over herself and enjoys having sticky fingers. She didn't mind circle time and parachute play she had been crying at school during some of these activities the last few weeks for some reason but today she was enjoying every minute.

This afternoon Ashley was fitted for a second pair of AFO's ankle foot orthotics. She got her first pair when she was almost two she wore size 2 infant shoes at the time. She's less then two months from turning four and in a size 6 infant shoes still tiny but she had clearly out grew them. They put casts on her feet and ankles to make custom fit orthotics for her little feet. She didn't mind any of it and selected a butterfly pattern for her orthotics. We will be picking them up in March. I'll be sure to post a picture of her standing in the AFO's when we receive them. She has been able to stand for a count of 5 in her small AFOs so we are hoping a new pair will add even more seconds to her standing record.

Baby Boy Names

My husband and I are very excited for our new baby due this April. However we are undecided on the name for a boy. I'd welcome some suggestions. Here is a list of a few names we like please vote or post a name suggestion for consideration in the comments. I'd love to hear from you.

Winter in Canada - burr and ugh

Today it is - 18 C but feels like -26C with the WindChill and there is an extreme cold alert outside overnight. However this is Canada and my boys were very excited this morning to be going on a primary skate day. They will go skating outside on a nice figure eight trail that runs through the woods just minutes from the school. They will get some hot chocolate and they are bundled up. I'm glad i didn't volunteer to lace up skates. I don't think i could have handled the cold myself and Ashley would have been screaming she dislikes the cold when it's this bad and i can't say i blame her.

The groundhog said earlier this week that we have 6 more weeks of winter not sure if I'll make it! Dreaming of spring and seeing my crocous peak though the snow next month.

miracles happen around here one step at a time

Our adventure at physio today

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