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.
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!