Merry Christmas

We hope everyone had a good Christmas holiday. Of course our time off has flown by and one more day until we are back to work. Despite some sort of influenza virus that ravaged both Elizabeth and Daddy for a good week each we still had a good time. We kept to our tradition and went to Christmas Eve mass with the girls and they enjoyed the children's service and learned about why we celebrate Christmas. Elizabeth had a great time Christmas morning she woke up at 2:00 am and proceeded to open her stocking therefore was pinned down by me and we all slept in until 8:00 which was a real treat. She received the Tangled hair braider princess that was top on her list and as soon as she came in the living room despite being wrapped in heavy paper was greeted by a yelping puppy in a box (one that requires batteries we are not going there with a live one) once unwrapped she discovered GoGo the walking puppy which she loves.
We had a great Christmas breakfast with Grandma Ellie and Grandpa Boris and was spoiled by them. We ended our day at Grams and Gramps house with her cousins Madison and Danica and once again was spoiled again with her Video Girl Barbie (a total change from Rocky the talking dump truck last year). Of course there were some dragons, hot wheels cars and dinos as gifts but I am loving the fact that Barbies were top of her list for Christmas. As usual we have spent a large portion of our holiday trying to find room for all her new goods and I think a trip to IKEA may be in the future. Mommy and Daddy shared a gift and we now have a better camera so improved pictures will be in the future.

Thank You to All

Elizabeth's Christmas project for the babies in the NICU went perfectly. The donations we received from family and friends were amazing, we even received gifts from New York and Pennsylvania (thank you Anne and Abby). As you can see in the pictures the gifts were endless we received blankets, toys, hand knit hats & blankets, clothing, books and Christmas keepsakes.
With the help of Angela who has beautiful twin girls who were also born premature we stayed up late wrapped each gift and attached a card which had the girls pictures and how small they were when they entered the world.
On Christmas Eve Elizabeth, Meredith, Courtney and their big sister Kaitlyn delivered the gifts to the NICU. We had planned a drop off at the door but the Charge Nurse had us bring them down the hall in the NICU. We were not prepared to enter the doors to where everything began as even now it still brings back some scary memories that we try not to relive.
Elizabeth was so excited to bring the gifts for the babies and was so concerned about the 'tiny baby birds' as she calls herself when she looks at her NICU pictures.
I am sure the gifts from everyone will be cherished by the new parents who are with their babies in the NICU this Christmas.
Thank you to all who helped out with our new Christmas tradition.

Officially 6

 
Elizabeth is now officially 6 years old. Over the past week she has had endless cakes and get-togethers for her birthday. The first party was with her friends at a local indoor playground where she celebrated her birthday with close to 20 friends. I am so happy see the relationships she is developing with other children some who are family friends but others who she has met at school. On the day of her birthday Elizabeth was invited to a Christmas party for a girl in her class and it warmed my heart to see this little girl tell the other kids that Elizabeth was to go first because it was her birthday and her mom had added candles to the cupcakes and all the kids sang Happy Birthday, this was another affirmation of the choice we had made for her school as there are some great children and families who we are getting to know. Mommy and Daddy bought Elizabeth Barbie and her horse Tawny which she loves and a Nintendo DS which she has figured out all ready and loves playing.
It hard to believe that only 6 years ago we were had just begun a hellish nightmare and now we have a witty sweet little girl who we are so proud of.

A letter to Santa

 

Elizabeth has finalized her requests to Santa and worked hard on her letter. She has surprised us completely and has asked for Barbies this year. She has 2 Barbies already and lately she has been playing with them which I love to watch. Her new daycare has 2 little girls and I think their interests are rubbing off on her. I am fairly sure Santa will happily oblige and ensure the Barbies she has asked for will be under the tree.
As you can see in the letter her printing is getting much better with a weighted mitten she has more control and her letters are getting smaller. She is on a waitlist to be assessed for a computer as writing is difficult, slow and is beginning to frustrate her. We are confident that her printing will continue to improve so she can complete short written works at school.

I let my guard down

Things have been very good in the barf department for Elizabeth. She had gone 4-5 months without vomiting and is eating quite well (I won't count getting car sick on her Halloween costume because Daddy let her read her book in the car). Because of her long vomit free spell at some point I stopped doing a cursory check for garbage cans and quick escape routes. This left me ill prepared at her last Dentist appointment.
I think a series of events led to her mass explosion across the room and at the poor Dental Hygienist but she did give us a warning (I'm gonna barf)but my previous quick reflexes (I have been able to slide a bowl across a table and catch her dinner) and not knowing where the garbage can was left her and the office in a mess. Poor kid had to go home in the cold in her winter coat and underwear.
The plan for next time; no cookie dough tooth polish, she is not to lie flat and only afternoon appointments (she is pretty gaggy in the mornings). This little episode, a frequent cough and her gagging through breakfast is leading me to think that reflux is still not a thing in the past. Maybe we should invest in one of these, I do find Ziploc bags are great but it would be nice if they were not clear.

Help us Help Babies this Christmas

After reading Anne's post (see link on last post) I have been thinking what we can do for the NICU that cared for Elizabeth. Every year as Elizabeth''s birthday approaches I want to do something for the NICU but life never seems to slow down for us. Elizabeth still averages 2-3 appointments weekly for therapy (speech, PT, OT), her medical appointments and with her gymanastics, hippotherapy and dance we are always on the go. So 6 years later I am now determined that we will finally help the babies and their families who will spend their first Christmas in NICU.
Elizabeth was born December 17 and as you know it was 3 1/2 months too soon as she was due March 29. Elizabeth's first Christmas was not one I want to relive, Christmas Eve she became very unstable and the Doctors and Nurses were quite concerned about her. I sobbed to her Dad that I hated Christmas and I never wanted to see another Christmas. As we did not anticipate a Christmas baby we also had not bought one present for her 1st Christmas and I was upset that she would not have anything on such an important day.
On Christmas day 2 cherished moments happened; when we arrived at her bedside she had gifts to open and I held her for the first time. I was so touched that complete strangers had bought her gifts and we continue to cherish these gifts each Christmas.
This year we would like to make Christmas day a little better for babies who are spending their 1st or even their 2nd Christmas in the hospital and for their parents who are spending Christmas day not with their families having turkey dinner but with their sick infant in the hospital.
The NICU that Elizabeth was at is a large facility with almost 50 beds so this is a huge undertaking that is why we are asking for your help. We would love to have donations of babies first Christmas ornaments, blankets, a cherished book, Christmas stockings or small bright baby toys (please no stuffed animals as they can carry germs). We will deliver these gifts Christmas Eve and Santa's Elves (the NICU Nurses)will deliver them Christmas morning.
We hope to put a smile on a parents face and let have a little bit of normalcy on their baby's first Christmas. If you would like to contribute please e-mail me or leave a comment here.

I couldn't have said it any better

November is Prematurity Awareness month and Anne a very dedicated Mom to Eliza who was also born too early sums it up click here to read her post.
Elizabeth will be 6 years old next month and still her prematurity continues to affect her and will unfortunately affect her throughout her life, it has also affected our family in so many ways. The mantra 'they will catch up by 2' will never be her case and not for many other babies born early and the Health Professionals giving this message give false hopes and do not prepare parents for the difficulties they will face.
Living in Canada has allowed us to access top notch medical care and not to have to worry about mounting medical bills. We are so thankful for the amazing care she received in the NICU and we attribute her daily successes to the care she received.
I would love to be able to do something for the NICU that Elizabeth spent her first months in but each year I find the running to and from appointments has not slowed for us and free time continues to be at a minimum. I have an idea and I hope it will work out so stay tuned.
Thank you to Anne for your honesty, it reminds us that we are not alone.

On the Bench

As Elizabeth is doing better at gymnastics and has a young fearless coach I now get to sit on the bench with the other parents and watch (at the edge of my seat). Usually I had joined her and helped her as needed. As I sit on the bench I get to watch other kids and listen to their parents.
I am sure other parents of children with disabilities agree that they often feel very conscious of what others think about their children. I am very aware of when others stare at her or make comments about her. I see how some parents roll their eyes when she takes longer and causes the other kids to wait their turn. I am aware of the complaints to the staff regarding Elizabeth being in their child's class but fortunately for us their 'fair play' rules allow Elizabeth to participate with her peers. I see the kids rush to get in front of her so they don't have to wait and I have even seen a child step over her when she has fallen down just so she could ahead of her.
What I was not prepared for at her last class was to sit by a Grandfather who did not know Elizabeth was my daughter and listen how he was describing to his son a little girl with 'determination, spunk and perseverance' he remarked over and over again how much she improved over the past couple of weeks. He noticed me giving her a thumbs up and asked if I was her mother. Trying to fight tears I told him she was my daughter and thank you for seeing her how we do; determined, spunky and a girl who tries hard in everything she does.
Check out the clip below, she wowed us with walking along the wide balance beam and stepping over obstacles while in her Superwoman suit.

Gymnastics

Happy Halloween

Elizabeth had another great Halloween, I think she has more fun at Halloween than Christmas. Trick or treating should happen weekly as it is a great way for her to get exercise, all the uneven surfaces and the walking is great for her. Despite Elizabeth being a child who loves to get dirty there is still no way she will touch to the insides of the pumpkin but she happily drew a T-Rex on her pumpkin. She went trick or treating this year with her cousins who now live pretty close to us which is great. We made our ritual witch finger cookies which turned our pretty gory. I got to go to her school and see her Halloween dance, it was great to see all the new friends she has. I had to laugh as she was chasing all the boy superheros around pretending to beat them up as she was Superwomen. Daddy even got dressed up and looked quite handsome in his bikini and hula skirt. After sorting her loot Superwoman passed out and I am sure she had many dreams of all the delectable treats she picked up.
Hope everyone had a good Halloween.