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!


Team Carter Jay said...

WOW! What a journey, and you're right...Carter is a lot like her. HAPPY BIRTHDAY ASHLEY!!!

Colleen said...

Happy Birthday sweet girl!! I hope your day is extra special just like you!

Anonymous said...

Grammy and Grampy are so very proud of you, Ashley. It was wonderful to get to spend the weekend with you and to celebrate your 5th Birthday. It was wonderful to see you smile and see how happy you were, every time we sang Happy Birthday. If we were still there, we would still be singing it. You are a treasure.
Love and kisses,
Grammy and Grampy

Michelle said...

Oh, Sherry, this is such a sweet post. It feels me with hope. Thank you for sharing the story and all the great pics!! Happy Birthday, Ashley!!

Michelle said...

Oh, Sherry, this is such a sweet post. It feels me with hope. Thank you for sharing the story and all the great pics!! Happy Birthday, Ashley!!

BusyLizzyMom said...

Happy Birthday Ashley,
What a nice post it so nice to hear all the accomplishments she has made over the past couple of years.

CC said...

Thank you for her story and all the wonderful pictures!! She reminds me a lot of one of my students (now age 10). If they have similar paths then there is so much more in store for her!!! :) :) :)

(I really need to get a step by step for this student. She's doing well with all the tools I've used with her thus far, but I think a step by step with the "random" feature would be great as well).