Sunday, 28 March 2010

Happy Birthday my sweet girl Ashley

My sweet girl it's hard to image 5 years have gone by since your arrival on that easter sunday.   I can remember it like it was yesterday you were so adorable  and gave Mommy and Daddy a good scare that spring.  Today you continue to  inspire me to do my best for you each and everyday with your easy going spirit, and sunny disposition.   You just keep on trying and it's really making a difference you are doing new things all the time lately.  I'm so proud of you.    I feel extremely blessed to have you here today to spoil you with presents and see you grow into a beautiful little girl.  This journey with you is so exciting and fun.

My baby girl  at her birth before we knew what lie ahead.


Then less then 24 hours later  I was scared stiff  and in disbelief for my precious girl but so thankful for the NICU and the doctors and nurses that saved her life many times already,  I didn't want  to know  how serious it was and how the doctors didn't knew why this was all happening.   I still didn't realize the journey that lay ahead.  I took some time for all this to sink in.  
Those first few weeks the doctors keep coming to us with heartbreaking  news, a stroke, a thrombosis in the heart, a brain MRI that didn't look normal her corpus callosum was very thin it was concerning, then your genetics. I truly felt I couldn't take anymore bad news about my sweet precious girl. There wasn't a test that came back normal or with good news.  I remember not wanting  you to undergoing anymore test I didn't know if  I could take it but we continued on for all the test they needed to do.   I wanted to take you home so bad to be with your brothers to love you, hold you and raise you.  We prayed and your extended family was just as worried I could sense it on the phones calls,  how much this hurt to hear how serious this was, your very special cousin Melissa rushed here from Europe days after your birth  to be there for you and me.   It meant more then words can say.   Your grammy and grampy sang to you, read to you and prayed for you  in the NICU and took extra special care of your brothers during this time for days which turned to weeks and then  months.   We couldn't not have done it without them as I couldn't leave your side.  You needed me and I needed you.  I honestly never knew babies could be so sick back then.  I have learned so much from you my sweet girl. 

We took these pictures July 28th, 2005 you underwent a heat catherdization and lung biopsy your pulmonary hypertension was serious.  The doctors needed more answer why was your heart and lungs racing.  We were told you may need chemotherapy or serious steroids all very serious intervention the best case you would continue on oxygen and out grow it.  We all prayed, your grandparents, uncle brett and brothers all waited at the hospital that morning very worried.   
Our prayers were answered the cardiac cath and biopsy didn't show any serious lung or heart disease just very premature lungs.  With oxygen, weight gain and growth your heart and lungs would hopeful outgrow these problems.  Time sure was good to those little lungs of yours.  We left the hospital a few weeks later with oxygen and told she may need it for years girl did you ever prove them wrong.
As you continue to do each day defy the odds.
Ashley on her first birthday just needing oxygen while sleeping already. She had also just learned to hold up her own head but couldn't lift her arms up or bring her hands to her month.  Look at the cake it's bigger then her.  She was 15 pounds then. 

On her second birthday she was struggling to gain weight it was a rough winter with lots of time spent in hospital and she went for her g-tube two weeks after her 2nd birthday at 16 pounds.  I  remember we had the sweetest cake and a number of friends. She could not stay awake for the presents and we opened them while she slept on my lap.    She was sleeping a lot then she really needed the energy from the g-tube feeds she got shortly after that birthday.
 I found these photos from her 2nd party.



Her third birthday you were being g-tube feed exclusively and had little interest in food however..



you had learned to sit up independently then and gained some much needed weight  you were close to 20 pounds. You also loved My Little Pony.

Here's Ashley on her 4th birthday  you continued to amaze me with big gains she learned to bum scoot and just started eating after two years of round the clock g-tube feeds.  These were big gains for her and we couldn't have been more thrilled.   She was about to become a big sister as 3 weeks later Taylor entered our world. 



Today the big day her 5th birthday!!!
Girl have you grown your getting taller 3 ft 1" tall and close to 24 pounds now.   She used her step by step communicator continuously  at school her teacher ordered three for her in september.  On each button she records multiple conversations for Ashley to have with her peers and school staff.

Pressing her step by step she  makes statements and asks questions such as...
  •  It's my birthday
  •  I'm 5 today
  • Can I have my birthday ribbon?
  • What are you having  for  snack Emily?
  • I'm having cookies
  • How about you sarah?
  • What about you Lauren?
  • Would you like to play with me lauren?
  • Lets play at the sand table.

The kids really enjoy these conversations with Ashley and jump to respond.   It truly allows them to connect with her.  It's so wonderfully fabulous. She is in a class with 16  typically developing kids and the teachers and children include her in everything.  She is growing and learning so much in this environment.

So far this term at school she also learned to SCRIBBLE, make marks all over the paper it's beautiful. Last year she needed hand over hand assistant she didn't have the pressure required to make a mark on the page and had lots of trouble looking  down at her work.  She now brings home colourful work, she created this on friday. It 's now on our fridge.

Today on her birthday she surprised us by being able to OPEN her own present. Then she proceeded to tear the paper this is a skill which  requires  motor planing pulling your hands in opposite directions.  Motor planning is very hard for my sweetie but she on her 5th birthday made mommy very happy to watch her open her a number of her presents herself for the first time.

She started getting gifts on thursday from friends that love her. Thanks Joanne!
Thank you Adrienne and Tristan for Dora and Brown Bear, Brown Bear. Ashley is a book lover and Tag is the best. 

Then on School on friday, she got tons of  attention she was tired that day but couldn't stop smiling.




She handed out loot bags herself one by one to all her classmates the kids loved it.  She was able to tell everyone she met it was her birthday with her step by step.   I love that they give her words. 

Today March 27th 2010, we all went to Toysrus, mom, dad, grammy, grampy and her brothers. We spoiled her filling the cart with toys we thought she could play with it was so much fun.  We came home and wrapped she napped, made a yummy bbq dinner and played. It was a great day.

My 5 year old girl, the cake, decorations treats and presents.

It was a special day for us all.


I'm so excited for this year ahead.  I know you will surprise and delight all of us.

I love you my sweetie!

Sunday, 21 March 2010

Taylor and Damon


Well my husband got a new phone yesterday the iphone.. okay and in 2 seconds i snapped this photo and posted it to my blog with a blogging app. Way to easy now I need a new phone and a SLR camera the want list just keeps growing doesn't it.

-- Post From My iPhone

Wednesday, 17 March 2010

My things change quickly here

Remember just two weeks ago what it looked like out my front door. Now look what appeared in the front garden this week a crocus. To me that means spring is officially here.


Here are the boys and a friend on a bike ride by our house. I kept up with them by jogging and pushing Taylor and Ashley in my phil and ted stroller. My legs were burning at the end but it was a good burn.

We dared to enter..


a bridge on the trail


A pond on the trail.


It's march break here and I'm enjoying having the kids home and all this lovely weather. Goodbye winter you won't be missed for awhile.

Check me out

video

Love these milestones!

Wednesday, 10 March 2010

First Shoes

Taylor is pulling  up to a stand everywhere and is cruising along the coach or behind my kitchen stool.  So I felt he was in need of his first shoes.   Off we went to Olly today

  Roobez 1st Step they are so cute and perfect for exploring his world. 

Speaking of walking....
Ashley is very slowly warming up to this walker.

She also likes to venture outdoors. 

Friday, 5 March 2010

Did you guess...

In case you were wondering what had magicially arrived at my door this week.   I'll keep you in suspense no longer.
A Signing Times Parent Success Kit from PTPA Media. It's mine to keep all I have to do is make good use of the it.   Watch the DVD listen to the CD, read the book and check out the flash cards  and most importantly read the tips for parents on teaching babies and children American Sign language.  Then I have to review the product for PTPA to share with other parents.   Ashley has Signing Times Baby DVD 1 and 2 as well as a Baby CD.  The Signing Times Baby DVD have always been Ashley's favorites she would choose signing times baby over Dora anytime.  I'm  pretty sure she will like the new DVD with bigger kids like herself signing.

I'm  following the tips in the parents guide and trying to teach Taylor  3 signs milk, finished and more and Ashley one addition sign.  Ashley is currently doing two signs successfully finished and more.  I'd love for her to have a few more.  I'll post my review and their progress with the signs in 2 weeks time.

So I'm  happy to be a Official Mom Tester for PTPA.




Other Communication news around here:

I'm also learning  how to create my own Picture Symbols using Boardmaker this week too.   I haven't had much success with that yet but free time is very limited.  Thankfully a  good friend shared this website with me yesterday before I started to feel too overwhelmed.

PreKindergarten Boardmaker activities  - Ready made stuff just what I need.
http://prekese.dadeschools.net/BMD/activityspecific.html

for example...

It has  pages and pages  of symbols of pre-K play like play-doh, tea party, gluing, cutting, birthday parties, there are too many to name.  It's really cool and now that I have the software all I have to do is download and print.  Then Ashley and  I will be able to interact at  whole new level.   She has made great progress in this area lately so this can only help her.


Well I can't finish this post without a picture of  little Taylor today tuckered out at 10am. I also felt like this today but didn't have time to snooze maybe tomorrow.

Wednesday, 3 March 2010

Guess what

Parcels  have been arriving this week.  With some pretty cool stuff inside.

Check this out.  Boardmaker v6 for my Macbook!

To top this off I was asked by a friend to review  a product I said sure why not. 
Today this arrived:



Any guesses as to what this is? 

It will also help Ashley talk and maybe Taylor too.
It's so much fun. 


Tuesday, 2 March 2010

My Little Ones

My Ashley



After a busy day at school monday within seconds of getting in the car. The girl likes her naps.

I hope tomorrow she will have enough energy to make it until 2:30. 



Guess who is sneaking up here...


  It's Taylor 





This was taken maybe an hour  ago.  After a busy day of peekaboo.  He likes falling asleep next to me while I read each evening then I  move him to his crib.  Bad habit but he is so cute and loves to cuddle up with his mamma.  We read his books too, his favorite is bright baby Trucks. 
 I love this time too. 



Now I'm back to my book... I've read a good bit of The Space Between Us and it's very interesting to me but I've set it aside  as I have to read Open by Andre Agassi for my book club and actually I think I'm going to enjoy this one as well.  So I'm signing off to curl up with Andre .