Look who is 7! - Party Video

March flew by and birthday season is in full swing at our house.  Ashley turned 7 last week and I'm amazed at all the progress she has made she's really moving about. She is crawling just a little,  she enjoys balancing on high knees and trying to stand up it's fabulous progress. She's also using her spoon to feed herself a few bites.  She really enjoys her days in grade one too.  I will follow up with a blog post on all her progress later this week.   This weekend we threw Ashley a rainbow gymnastics party at Gymalaya. What a fabulous place to have a party.  She enjoyed her birthday there last year too and perhaps we will do it again next year.  A big thank you to all of Ashley friends and family that came to make this day so special. 

Ashley's smile the entire day!

 Fun Brothers taking after Grampy.

 Rainbow treats - home made by Mom!

Now I have to plan something just as fun for Damon who will be double digits  next week closely followed by Taylor 3rd birthday in 2 weeks. 

Here's a link to last years 6th birthday video also celebrated at Gymalaya.   I did a better job with the video last year. I need to another photographer besides myself at the party.  

My plea to the premier

Few people have that special touch,  a miraculous skill, that relentless dedication to their profession that make an incredible difference in peoples' lives.  This special lady Bernie who is a paediatric  physiotherapist has all those qualities.   My daughter had the good fortune to start seeing Bernie when she was just a few months old.  She was very fragile and her future was very uncertain.  Ashley needed Bernie's help to gain head control, roll over, use her arms to reach, and bear weight through her legs. I began to learn that she is one of the very best in her field and Ashley was so very lucky to have her on her team.  

Because of this lady, Ashley is now a walker, and even a soccer player.  Ashley has a new level of independence with her walker and every new accomplishment is like a gift. This did not come easy for Ashley but with Bernie's skills and advocating that Ashley received the adequate number if visits to make it happen, Ashley has now received a new level of freedom. You can't image how shocked and saddened I was to learn that Bernie's contract was recently cancelled by 1 to 1 Rehab. We need more physiotherapist like Bernie in the public sector.  

At present CCAC's and Children's Treatment Centre’s in Ontario  look more  at the number of visits and block the child for treatment, rather then focusing on the child's ability to progress and to attain outcomes goals.  There is just not enough funding for physiotherapy to provide the level of therapy to make a difference for the growing number of special needs kids in Ontario. We are lucky in that we can afford to supplement the government therapy with private therapy.  That was also needed to get Ashley where she is today.  Not all families are able to supplement the government therapy with private physiotherapy. 

I wish I knew how to let the provincial government know many more kids need more therapy and that it really pays off in the long run.   Many more skilled physiotherapist need to be hired to meet their  needs.  Kids who can walk and who are not confined to wheelchairs will function better and be happier adults.   They will require less expensive health care and equipment if they can move about independently.

Dalton McGuinty, I know you want to build a brighter future for Ontario.  Please don't forget about my girl.  If it were not for Bernie, Ashley would not be where she is today.  Bernie is someone that you want on your therapy team.   There are many more kids in York region that would have benefitted from her service.  Not all  parents can afford private therapy.   Physiotherapy should not be a luxury for kids who cannot walk, hold up your head, feed yourself or speak. 

Kids here need more therapy and this isn't just a physiotherapy problem, it can be said for occupational and speech unfortunately.   Ashley is enjoying and benefiting greatly from her current block of PT at CTN and but it is only an 8 week block.   Ashley will have to sit out at least 8 weeks before starting again.  Ashley will spend more time out of therapy then in therapy in the next year.   Image if she regresses and doesn't have that opportunity to learn how to walk independently.   Ontario has amazing therapists who are forced  to work privately and many families can't afford this cost.  Please don't let these children down. It's an uphill battle just to be a kid.

You can see what Ashley can learn to do when receiving on-going therapy in her progress videos here, here and here.

A treadmill work out

September passed by in a total blur for me even though three kids where in school full time there was no time to blog.  My  days are filled with phone calls and meetings.   There seems to be something on my calendar each evening too. Ashley's doing fabulously with the new schedule and managed very nicely to give up her naps she is actually sleeping 12 hours each night which leaves her very happy and  giggling each day.  Dropping the nap seems to work really nicely.

Last week  Ashley had back to back OT and PT at CTN.  It was honestly much more then I expected and Ashley loved it.  She was on the treadmill for 15 minutes straight and they kept speeding it up from 0.4 miles an hour to 0.8 miles an hour at the end her feet were moving at a nice pace and she was smiling the entire time.   I take her on a treadmill at home but I never challenged her to move her feet that fast and she would have short breaks at home as my arms would get tired just supporting her.   Mommy needs to get in shape.    I was surprised to see how easily she handled the faster speeds and her heart rate was good the entire time.  

She also crawled up a hill, worked on balance on the trampoline, crawled across a very big bean bag walked along the parallel bars and laterally along the edge of a table. Perhaps a few other things I'm forgetting too.   It was  a great workout  and all this following a session of OT, plus a morning at school too. 

OT was very busy too with targeted drawing, throwing, stacking and locating beads in putty.    I have a feeling  her new OT had more tricks up her sleeve if there was more time as there was a few washroom breaks but it was really great. Ashley has not had  OT since preschool.  I feel this session was long overdue and with guidance and practise I'm sure Ashley's  fine motor skills will improve.  

Ashley is already looking forward to returning CTN this week. 

Moments that take my breath away - video of Ashley's progress again!

This month I have so many things to blog about it seems one good thing after another is happening around here. Today Ashley had another amazing day at therapy.   Last week she took 2 steps totally unaided for the first time.   I wasn't there for that big moment as I was with Damon and his class on a skating trip.   Today Ashley was pretty determined to repeat those independent steps for me as Mommy needs to see and share it with the world of course via this blog.


Moments that take my breath away from Sherry C on Vimeo.
Ashley takes 3 steps all on her own at 5 years old. She has been working on this her whole life. Thanks to the help of two very amazing CME Medek Physiotherapist who help make these miracles happen.

Look at Ashley's progress - video

Moving along! from Sherry C on Vimeo.

Single Plan of Care - Fall Video of Ashley's Progress

Today my husband and I attended Ashley's Single Plan of Care team meeting. It is always amazing  to me to see just how many people help and care for my little girl.

 Ashley's  making great progress across the board  in communication she is reaching for her picture cards rather then using eye gaze, she making lines on the page now and holding a pencil better compared to just dabbing with the marker last year,  she is doing some feeding with a spoon and fork at times, and slowly and steadily progressing with her  motor skills.  I prepared this video to show her team how much work she is doing outside of school in therapy have a look.  I'm so proud of her.

Photo and video editing at www.OneTrueMedia.com

Ashley's fabulous Team!

Yesterday Ashley also received her PODD!


Ashley also was given this new voice a communication book... pretty impressive and it has to travel with her at all times.  A lot of thought was put into this and we are going to do out best to help her learn to communicate with it.  It has many sections to give her lots of reason to talk to us.

fyi PODD is a Pragmatic Organisation Dynamic Display
This book isn't exactly Dynamic like the Dynavox or iPad but hopefully if she learns this system well an iPad will be in her future.  Someday she will be giving speeches just like Stephen Hawkings!   Wish me luck this task is just a bit overwhelming to say the least but I can't let her down and her voice is so valuable. 

Ashley on the move - video

Here's a look at my girl doing her CME physiotherapy and a bit of play as that's what girls do. I'm so proud of her and so very thankful to her team of amazing therapist and teachers. This is the video we shared at her Single Plan of Care team meeting today.

This video is dedicated to Bernie & Jo-Anne the best physiotherapists in the world.

Ashley's Dream Team

 I'm so proud of my girl she is making progress in all areas. What can be better then that. She is scribbling, drinking a little, moving about more and best of all making tons of friends.   When we returned from lunch today the girls in her class gathered around her stroller and were chanting Ashley, Ashley, Ashley it was so cute. Ashley was giggling and loving the attention.   

Single Plan of Care

I'm so excited I made a fabulous montage of Ashley doing all kinds of gross motor skills for her upcoming Single Plan of Care (SPOC) meeting. I'd love to share it right now but I think I want to  hold off so everyone can watch it at an upcoming team  meeting  May 12th.  It's really sweet.

This will be Ashley's second SPOC meeting at the school, many people attend as she has a PT, OT, CDA (Communication disorders assistant)  and speech therapist (SLP) for home and another team at school.  Her school principal, teacher, education assistant, special education teacher, case manager, early interventionist and a team co-ordinator also attend that is 15 people.  They  all help Ashley reach her full potential it's her DREAM TEAM. She even has a few other members of the team that won't be at the meeting, home nurse, school nurse and  a private PT.  She has 3 PT's on her team and they are all so skilled!  Many members of Ashley's team have come to be dear friends, who understand the ups and downs of this amazing journey we are on.  I feel so blessed to call them friends.

 My video includes a small tribute to her team it is impossible to thank them enough for loving Ashley and helping her excel but I can at least say thanks.

My cutie

Doesn't she look so cute, it's getting warm here I had her in shorts today.  She had physiotherapy and was working on sit to stand.  It's tough for her but she looked good doing it.   She always dresses up for physiotherapy.  I'm working on a video  of her one hand walking, and park play.. coming soon. 

I'm Walking on Sunshine

Make an on-line slide show at www.OneTrueMedia.com

miracles happen around here one step at a time

Our adventure at physio today

Make photo slide shows at www.OneTrueMedia.com

Speeding up

Learning to stand and walk is something that many of us take for granted as our babies for the most part just manage to figure this out. Watching Ashley struggle with this each and every day in her short life so far I've really come to appreciate what a miracle it really is. She still has a way to go but it so nice to see her slowly progressing and be able image that one day soon she will be walking to mommy.

Here is a clip from physiotherapy yesterday Ashley's working on her speed in the walker on a short walk to mommy.

She been spending a little bit of time in her AFOs (ankle foot orthodics) and they seem to help her balance in standing just a little bit.

Here's a peak at Ashley's progress with her Kaye Walker

Way to go girl !!!

I also signed Ashley up for a inclusive recreation program offered by Variety Village called children in motion she went for her 1st session this afternoon. There was a number of kids, there with varying abilities they all enjoyed jumping, skipping, running, an obstacle course and parachute play. Ashley really enjoyed all the physical activity she needed help for much of it but was laughing during all the running and skipping and was highly motivated to move her feet.

Physiotherapy

Ashley did great at physio today both her therapist and i feel that her balance and standing is improving!!!

Ashley and I also headed downtown today to have her thyroid level rechecked. She didn't appreciate the needle but got over it quickly. Now I'll be anxiously awaiting the results of this blood work. Hopefully everything will be normal and she won't require medication.

disability to possibilty

From disability to possibility is what CME therapy does for Ashley, here's a collection of videos of Ashley learning to walk at physiotherapy today. This is a typical Thursday for Ashley she is working hard and is making steady progress on her road to standing and walking thanks to both of her amazing therapist and pure determination.

Ashley I'm so proud of you!

Can it get any busier

June is coming to a close and this month must have been one of the busiest I can remember for appointments, therapy sessions, and events. I felt overwhelmed a number of times I have to admit. It went something like this. A whopping 26 appointments this month alone

• 10 for physiotherapy (CME therapy)
• 4 for Augmentative communication,
• 4 for play therapy
• 2 for occupational therapy
• 2 dietitian and feeding therapist
• 1 Early intervention & 2 with potential new nursery school
• 1 SPOC (Single plan of care meeting) basically a team meeting with all therapists, case manager and service co-ordinator.
• 2 medical appointments

Not to mention we also attended a graduation, wedding, parent conference and parent advisory council for the Children Treatment Network. We reduced Ashley's (tube feed) calories and convinced her to do some eating and drinking. Ashley also progressed with her toilet training routine and manages most #2 and a few #1 on the potty! And I never forgot about the boys.

Ashley was a real sport to get through all this. Next month I'm setting more time aside to breathe before potentially starting back to work again in August.

Super Mom

Physio

Ashley is always amazing me...(so is Joanne she is very skilled) Damon was our photographer and the timer he counted until about 75 when we decided she could stand on baseballs all day and we need to find more ways to challenge her balance centre. Just another day at physio.