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.

Preemie Brain

After many sleepless nights worrying about the results of Elizabeth's psychological/educational assessment the results are back. I think we have both spent this past month bracing ourselves for the worst as we have been really worried that Elizabeth will be diagnosed with Asperger's Syndrome. Since she has started school she has been doing some pretty odd things (spinning things, constantly moving and I am finding her on her own most often when I pick her up from school). We of course have been very observant of 'symptoms' lately and I am sure we have been on Elizabeth when she does something a bit odd (sorry Elizabeth).
The results did not show Elizabeth is on the Autism spectrum at all (YIPEE). So now we can breathe a huge sigh of relief and know that we have a really quirky kid who now will be allowed to play with her dinosaurs again (I had them banned as she REALLY likes to play with them). She did show pretty typical features associated with ADHD which is not much of a shocker for us she is pretty distractable and still quite impulsive. Similar to previous testing she continues to have problems with visual spatial skills and ranged from the 9-28 %. Her fine motor skills were below the 9 % which we know; despite her best efforts printing is still difficult for her to do because of her shaky uncoordinated movements. Her language skills made us proud as they were ranked at 7 years 10 months for both receptive and expressive but her poor articulation of words still makes things difficult for her as not everyone understands her.
The recommendations for her include; an FM unit which we luckily have, a computer/assistive device for typing as printing is far too difficult and time consuming and close supervision to ensure her safety. The Psychologist said because of her advanced language skills Elizabeth hopefully can compensate for her visual spatial skills as she can understand through description of problems as opposed to looking at them. Her thoughts were Elizabeth should do fine with an academic program with the appropriate support.
We are pretty happy with the results of her testing, the things we had been warned about when she was born regarding ADD, visual processing were present so all in all she has a pretty 'typical' preemie brain.

Baby Chair

We have been working with Elizabeth's school and her OT to find seating at school for both the floor and at her desk. Her teacher is really noticing Elizabeth's movements especially on the floor at circle time and feels she is not paying attention. Elizabeth is having a hard time sitting on the floor and has been lying down or sitting 'w' style which are both things that she does not do at home. Her OT feels that she is paying attention but she just cannot stay balanced and the slightest movement has her falling over. We have noticed her movements have increased and she is pretty busy at home too, when we catch her she tries to justify her increased activity, she told us the other day she was just 'making obstacle courses' and when she was spinning something it was 'a tornado for her ponies'. I have been thinking about trying brushing again to see if it will calm her as she is pretty excitable lately and I seem to remember she did this last year at the beginning of school.
To keep Elizabeth still on the floor her OT had suggested to try to the childrite seat which really is the bigger version of the Bumbo. I had my reservations about this chair but I thought I would let Elizabeth see what she thinks. I asked Elizabeth how she likes her new chair and her response was 'it is a nice fall color, it is comfy and it is a baby chair'. Her teacher says it does keep her still which is great but I don't think that alone is worth her feeling like a baby or the potential of having her friends make fun of her.
We are really grateful to have a great OT who is already noticing Elizabeth's needs and who is flexible and listens to our concerns and Elizabeth's wants. This week we will try some more options and hopefully we will find something appropriate to keep her supported and maybe a bit more still.

Happy Thanksgiving

We had a beautiful Thanksgiving weekend, the sun was shining and the rain stayed away. We spent lots of time outside picking pumpkins, pumpkin bowling, visiting a conservation park and having turkey dinner with our family. What I really noticed this weekend was how much more endurance Elizabeth has, she walked for a good part of the day and did not even complain about her knee pain at night. We have also noticed Elizabeth is able to step up and down curbs on her own and her falling is less frequent.
We definitely this year are thankful for all the progress Elizabeth has made and how hard she perseveres. We are also very thankful for our family and friends, they are there when we need a hand.

Fall is here

I guess we can officially say good-bye to summer, the cool weather is a reminder that fall is here. One thing we really look forward to in the summer is going to the local farms for apple and pumpkin picking. The warm baked treats they sell are pretty good too. It is a good way to get fresh air and any way to get Elizabeth active without her realizing I am working her is the best. I love seeing how each year her endurance has improved as this year she was able to walk through the orchard and only needed a wagon ride back to the car, last year she spent a fair bit of time in the wagon.
Elizabeth is of course already talking about Halloween and told her teacher her favorite thing about Halloween is 'treats, treats, treats'. Elizabeth has already convinced me to decorate the house for Halloween and on Saturday morning we woke up to a child yelling 'boo' with cat ears and a tail.

I was approached by a colleague at work who had just finished a course from Cascades. As part of the course my colleague would receive a free pair of AFO's and she thought Elizabeth would be great to try them. I have been looking at these AFO's for awhile but did not want to invest money buying something that we have not tried.
Elizabeth was fitted for the Cascade Jump Start Bunny orthotics, these ones help to minimize knee hyperextension and keep her foot in proper alignment. We really want to work on Elizabeth's strength and increase her muscle mass to her lower legs and her old AFO's do not allow her to do this.
The bunny's have been great and she really likes them. They do limit her knee extension when she stands and they allow her to sit more comfortable on the floor which is great for school. The bunny's also help keep her feet from dropping when she rides her bike. She still needs the support of her regular AFO's for playing outside and walking distances as she will complain of knee pain at night if she wears them when she is active. We are hoping with her new phsyiotherapy block she will get some increased strength and be able to wear her bunny's when she is active too.

Big Girl School

Elizabeth started Senior Kindergarten last week and is loving big girl school. I have not been worried about how she would feel about Kindergarten because she is so easy going. Her first day of school she went off with the other kids and didn't even say good-bye. The little girls flocked to her as her outfit was pretty 'blingy' with her new sparkling lite-up sketchers and her bejeweled shirt all which she chose herself. We arrived at school with all the 'non-normal' first day items that I thought would help with her transition (maybe more the teachers transition), AFO's, handouts regarding dystonia, ataxia and Auditory Neuropathy, 2 Epi-Pens, weighted pencil and FM unit.
I was a bit worried about her going as when she met her teacher last week they gave the impression there would not be an Assistant for her, of course I was not happy. Luckily on her first day I met with the Assistant who would be available to help her get dressed and assist her with gym and recess. We also on the first day met the Itinerant for the Deaf who was there to set-up Elizabeth's FM unit which I was really impressed with.
All in all it was a good first week. There are things that we need to iron out but for now I am biting my tongue and trying to avoid being 'that' Mom. Hopefully as they get to know Elizabeth they will understand how much she just wants to be like her peers and will allow her the same opportunities, for now I will just hang on and wait.
You may have noticed in Elizabeth's pictures no AFO's, we are trying out some new ones and will post her progress soon.

Elizabeth had her routine hearing check at Sick Kids last week and as it is becoming quite monotonous. Elizabeth has to listen for the sounds and place pegs when she hears the sound, this is the same activity she has been doing for the past 3 years (see above old picture). I despise this activity for many reasons; the pegs I am sure have never been cleaned, she of course will still put them in her mouth, the abundance of pegs are tempting for Elizabeth and her sensory needs (she loves run her hands through the bucket), I have to attempt to distract her from running her hands through them and keeping Elizabeth still for any length of time is a challenge. Elizabeth does pretty good despite how boring it really is but after 10-15 minutes we have both run out of patience. We have had the same Audiologist since Elizabeth's Auditory Neuropathy diagnosis and she doesn't mind all Elizabeth demands for stickers and for her to play the animal that make sounds. We also saw her ENT and he is still amazed by her progress as she is one of the few children to not need a cochlear implant. Only 15% of babies with AN regain their hearing and she is one of them which is such a blessing.
Normally her test results show a mild hearing loss in her left ear and her right ear tests fine. Last weeks results showed her left ear with a mild hearing loss and now a loss to her right ear as well which is not typical and is not related to congestion. AN can be such a frustrating diagnosis as it is does fluctuate day to day and we do not know how much distortion Elizabeth deals with. A great example of how AN distorts speech is here.
We will go again in 4 months to be retested and hopefully her right ear will be better. It is a good reminder for me to increase how much we use her FM unit at home and when we are out but the times when she really needs she cannot wear it (the pool and gymnastics). I must remind myself to bring a different activity for Elizabeth, any ideas would be much appreciated.

Swimming

Elizabeth just finished another session of swimming lessons. I know I have said this before but she loves water, I think this a time she feels free. Sometimes this freedom she feels is a bit too much for her and she thinks she can just float away but at least this time they did not have pull her out from the bottom of the pool. She was able to hold still long enough for a back float and is beginning to swim a bit on her own (under the water). As usual we sit on the edge of our seats waiting for her to go under and this time was even worse because they were learning to dive in the deep end. I myself think learning to swim should come before diving in the deep end (with no floaties). Her instructor was great as well and she really worked hard teaching Elizabeth to pull herself out of the pool which too she is getting better at. We will sign her up again in the spring as I think I have enough white hairs for now.

We will take option 'No'

What I despise the most in the summer is going for all Elizabeth's medical appointments. I absolutely hate spending a summer day sitting in dirty hospital waiting rooms trying to keep her occupied (as above we were playing playdough that I had stashed in my purse) and fighting hours of traffic to get in and out of Toronto. Elizabeth continues to puzzle and baffle every Doctor we meet with her varying symptoms. This summer we have seen some of her regular Doctors and also some new ones each one mystified by this 'very interesting and bright child'. As her Movement Disorder Specialist is away we met with the Doctor who trained her. I thought Dr. L in in his endless years of working may give us a glimpse as to what her diagnosis is. Dr. L. was interested in how she moves and specifically how she gets up to standing (think beginning walker on both feet and then pushing up with her hands). He feels she has both Dystonia and Ataxia but is not sure why, he does not feel this is related to prematurity. He was honest in stating that there was nothing than can be done for Ataxia presently and at least he was not too favorable of deep brain stimulation. The only options left for diagnosing were muscle biopsy and cerebral spinal fluid testing, we opted 'no thanks'. We also have seen the Geneticist who once again found Elizabeth's symptoms puzzling and does not feel her balance issues relate to prematurity. Her options; more blood for DNA testing and repeat Friedrich's Ataxia testing (this will be her 3rd time being tested) to rule out a rarer form. She also questioned whether Elizabeth has Perrault syndrome but this cannot be tested presently so we would need to wait until she hits (or doesn't due to the syndrome) puberty. We once again opted for 'no thanks'. Both Dr's think that her hearing impairment (Auditory Neuropathy) may be a key to her diagnosis as it is recently being linked with many disorders.
We feel all this invasive testing at the present is not fair to Elizabeth. A diagnosis of a rare syndrome will not change who she is or what we are doing for her and the search to find out why she is the way she is would just add extra stress on her and us. Her Neurologist was not too happy with our decision and said it could impact her children but Elizabeth has lots of time to decide what she wants done with her body until then we will stick up for her.
We of course tomorrow need to get up at the crack of dawn to see her Audiologist and the ENT, I hope it is rainy so we won't be cooped up on one our few summer days we have left.

Puddle Jumping

Splashing in puddles is one of Elizabeth's favorite things to do and it is also a great way to work on her jumping. She is now getting both her feet off the ground at once when she stops and concentrates. Elizabeth is sporting a very trendy look of plastic bags over her AFO's as we cannot find a pair of rubber boots to go over her AFO's. Word of advice plastic bags over AFO's do not work they just hold even more water.

Seussical the Musical

Elizabeth finished 2 weeks of performing arts camp at her old pre-school. On the last day the students put on a performance with the senior campers. I was so proud of Elizabeth; she followed the routine perfectly and really did well keeping up with her group.
The performance this year was based on the Dr. Seuss book 'Horton Hears a Who'. This story means a lot to us as we would often read book this to Elizabeth when she was NICU. In an effort to save the 'Who's' living on a small speck Horton teaches his friends 'a person's a person no matter how small'. It is a great story that teaches acceptance and how to stand up for what you believe.
The video is bit shaky as I was giggling at how cute they were.

I am also pretty happy with myself, I uploaded this video to you-tube on my own for me this is huge.

Conversations with Elizabeth

Elizabeth has been asking lots of funny questions lately about babies and about what she was like when she was born. After reading a book she has on the human body and pulling the flap to see how the baby born she expressed her disgust that the baby comes from her mothers 'bum'. I explained where the baby actually comes from and she once again expressed her disgust. She then asked if she was born that way too, I explained that because she was so tiny and needing help the Doctor's helped her come out faster from a incision in my tummy. Elizabeth ended the discussion stating 'I hope the next baby is born out your vagina'.
At least this discussion was at home, many of our impromptu talks happen when out in public and she really catches me off guard.

Next Time Decaf

After a year and half wait list Elizabeth is now having her psych-educational assessment. Depending on my mood I am okay or anxious about this testing, some days I think she will fly through this testing and they will tell me that she is a very smart girl who will do great and other days my fears are they will come back and tell us she has ADD and/or Asperger's. We feel that this testing is important so her teachers can adapt to her learning needs early on. We have no doubts about her ability to learn as she truly is a walking encyclopedia but her intense knowledge also makes us nervous because she really knows too much for a 5 year old. She continues to be impulsive and distracted at times but it is improving.
Elizabeth did quite well from what I could hear (Mommy's are not allowed to be present) I could hear her singing and giggling during the testing. Me on the other hand not too good the stress of the impending results had me edgy but the biggest problem is I drank a large Starbuck's Iced Coffee just prior to her testing. I don't drink coffee (hot or cold) and I should have thought that Iced Coffee contains caffeine (duh) but I drank a large from a freebie Daddy had got. Those were the longest 3 hours I have spent in a very small waiting room with nothing to do and on an extreme caffeine high. Of course the secretary was sitting near me and I was trying to be still so she would not report me to the Psychologist. To top off our day I had promised to take Elizabeth to a nearby splash pad for a treat for her hard work and of course when we got there it was closed so she at the end of her rope had a meltdown with crying and retching but we got sorted out when I found a nearby outdoor pool for her to paddle in. It took about 7 hours for the caffeine to clear my system even after lots of water and a run.
Elizabeth begins part 2 in a couple of weeks and next time I will be prepared with a decaf tea and a juicy book to pass a couple of hours and I will ensure that her reward won't be a let down.

Grammy's Cottage

We were able to get away to the quiet haven at my parents cottage last week. We had a very relaxing week doing some of Elizabeth's favorite things; catching minnows, fishing, swimming, playing in the sand, playing mini-golf and her favorite roasting marshmallows. We even found a museum nearby which had an exhibit on Dragon's which are close to dinosaur's on Elizabeth's list of favorite things.

Designs by Elizabeth

We have had some rainy days here so when I was at work Elizabeth and Gram's got creative. Elizabeth continues to pamper her dinosaurs; they are her dolls she carries them wherever we go, she feeds them, she does shows for them and lately she has been making them outfits as well. Her latest designs were rain-gear. As you can see her Dino friends are all in matching raincoats and hats all designed by Elizabeth.

Good News

I am pretty excited and feel like a big weight has been lifted off my shoulders. Elizabeth's new school called and had me come in to sign paperwork to get services (OT/PT) for the first day of school (I do confess to making a couple of phone calls and her dedicated Phsyiotherapist did the same). They also had me sign the papers to have their audiologist prescribe an FM unit at school which the school board will pay for. I have been pretty stressed about her entering school and ensuring her needs met but after hearing all that the school has done so far I am now excited for her to start.
Elizabeth is also pretty excited about school as well; she received a photo album from school with pictures of all the things she would be doing at school and she can't believe that there is a library there. She also already knows where both the Principal and the Secretary keep their candy which I am sure she will take advantage of.

More

I have heard from the grapevine that Ramon is just finishing his visit in Montreal for his CME Medek therapy. Hearing that he was coming back totally pulls at my Mommy's guilt as I know how much Elizabeth benefits from his work. When we finished a long block in Fall 2009 Elizabeth came home and walked up a small flight of stairs independently and hands free, fast forward to today and we have not seen it again since. As you can see in the video Elizabeth enjoys CME therapy and works well with Ramon she never fought or resisted. We have all the boxes and lessons from Ramon from her past sessions but completing the therapy needs 2-3 adults one who has the strength and skill to hold a 5 year old in the air by her shoes. I can't help but wonder if we were to find a way to afford more CME therapy what would she be doing now?

End of School and a Snake Necklace

It is totally bittersweet Elizabeth is done at her Preschool/JK. She has been at this school for the past 3 years and has played, learned, laughed and thrived in an environment that was perfect for her. I can't believe it was 3 years ago when I took her to see the school and then she was still crawling. Her teacher's now tell me they were really unsure how she would do as she was not walking but thankfully she did begin to walk 2 months before school started. Elizabeth was the first child to be integrated in their school and they accepted her for her not the difficulties she faced.
The small classes, interesting themes, additional French and art classes, how they celebrated Mother's day with a tea party and Father's day with a snack for Daddy before work and how they introduced academics in a fun way to learn. They always were interested in Elizabeth's well-being and every teacher knew her and encouraged her. The teacher's were very accepting of recommendations from her therapists, her fiddly FM unit and I loved that her teacher would even remove Elizabeth's AFO's to help her walk in high heels like the other kids.
Elizabeth celebrated the last of school at a picnic the school held. I think the highlight was the Reptile man that visited and brought all the things that Elizabeth loves. The snake necklace really made Elizabeth's day. We will miss her old school and the small safe environment they had but now back to big girl school and a new chapter in her life.

Dance Recital

Elizabeth had her end of year dance recital in her adaptive dance class. The class worked so hard practicing all the steps and Elizabeth remembered the movements quite well. Elizabeth really enjoyed her dance class, her favourite thing about her dance class is the attention she gets from her helpers. Elizabeth has 2 helpers that hold each hand so she can complete the steps with their support. Her helpers are the sweetest girls who adore Elizabeth and are teaching her so much. On the night of the dress rehearsal her helpers were waiting at the door for her and presented her with a card wishing her luck and coached her though all the steps and how to present herself on stage.
I did not get to see Elizabeth perform as I was backstage to help her and supervise the class but from what I heard she did great. Hearing the thunderous clapping from the audience was proof that the whole class was inspiring.

Fatigue

Elizabeth's Resource Teacher and I met to discuss her progress and her discharge. We were talking about Elizabeth's 'days' and how she fluctuates day to day for her need of physical support. Her teacher had said they often can know what day she is having if she brings her chair around in the classroom. On these days she often by the end of the morning has difficulty sitting on the floor so she will bring her chair during circle as well. Initially her classroom teacher would tell Elizabeth to put her chair back but after her Resource Teacher pointed out why she does this Elizabeth was allowed to keep her chair. This is a big change for Elizabeth as when she first started school she never sat down and then would be crying at home because her legs hurt. Her Resource Teacher has been a tremendous advocate for Elizabeth and we are grateful that she is aware of Elizabeth and her needs and can help others to be aware as well.
Now that it is warm outside and we are spending more time outside I notice she carries her chair around to play and help me in the garden. We really try to keep Elizabeth active and give her every opportunity to walk but after talking with her teacher I now know that I also to have be careful not to push her and give her legs a break.

Elizabeth is doing great with her new bike. We have bought her a Triton 3 wheeled bike/roadster and she is now flying on it. I love that I am actually getting exercise as I am running to chase her and keep her from danger. She loves riding it and is getting quite daring. The steering was tricky for her to figure out and in the beginning she smashing into everything and we kept having to pull her out of bushes and off peoples front yards. She is riding further on this bike and our goal is to ride to a nearby ice cream shop. Everywhere she rides people and kids stop by and say how cool her bike is, we met some little boys and they could not wait to try her bike, even though it was pink. We still have to modify it with a proper backrest so right now we used bungee cords to tie cushions on it so she can reach the peddles. We just have to find a basket so she can bring her dino's for a ride.

The big meeting (game)

We had our big meeting at Elizabeth's new school today. The meeting is to present Elizabeth's needs to the school where she will attend Senior Kindergarten, this is to let (or warn) the school what they need to prepare for the fall. Our biggest concerns are concerning; safety (during gym time, outside and in the halls), her needing assistance for changing her shoes and putting on her coat etc, a suitable/supportive chair for the classroom is available, having an FM unit available for her, the Itinerant for the Deaf assess her classroom and to provide support, having PT and OT consult and set the environment up for her needs and to ensure she is included in all activities to the best of her ability, equipping the bathroom for her independence (versa frame or grab bar) and ensuring her speech therapy is to continue.
We were lucky to have some of her therapists/teachers present at the meeting as they know her so well and are instrumental with the successes she has made. Her PT made it as apparent as she could that Elizabeth was not safe and requires close monitoring and equipment to maximize her potential but she is not able to outright say what she should receive (restrictions made by the organization CCAC that assesses her need for OT/PT). Her Speech Path on the other hand laid it out that Elizabeth has a moderate speech delay and should be getting the max 24 sessions.
The school staff that were present listened with interest and during the meeting seemed genuinely concerned with her needs and as they had met her they agreed with some of our concerns. Unfortunately the CCAC manager did not show up to the meeting as planned.
I thought things had gone well with the meeting until I asked when would we be hearing what services Elizabeth would be entitled to in the fall. Of course things became quiet and they said they would wait until the fall to put the paper work in for requests for service but she would recieve Speech therapy as requested by her SLP. I politely said I don't think this is the normal routine (I work for one of the agencies and know a bit more than the average parent)and will look into it tomorrow.
So tomorrow I will make some phone calls to find out the process and ensure things are ready the day she walks into her classroom. Waiting for the fall will not be an option. I am fairly aware that fall means maybe an October visit and then another month to order her chair and before we know it Christmas will come and she still will not have a chair. As for safety she is not safe at certain times and has to have support available when needed. I really hate playing this game, I try so hard to be nice and trusting and not get their backs up but now I have to be the pushy parent to get what she needs.

Art by Elizabeth

Pretty much daily Elizabeth brings home pictures she has drawn while at school. I can attest that at least 99% of her drawings are of dinosaurs of some sort. I do beg and plead with her to draw me a picture of a butterfly, flower or a person and she justs laughs at me. I do have to say her dinosaurs are getting pretty good now.

The Game

We have been busy preparing for the fall and all the changes that will occur. Elizabeth will be starting Senior Kindergarten (the school Superintendent has agreed with our decision to hold her back YIPPEE) and we would like to give my Mom a break from caring for Elizabeth so are trying to find a daycare for her to attend while I am at work. Elizabeth's big meeting with the school that she will be attending in the fall will be next month. This is one of the most important meetings; it will ensure Elizabeth gets the support she needs for entry into kindergarten and for her future schooling. To ensure she gets the most support that is available we must paint a picture of a child who relies on people and equipment to be independent and who is very unsafe (which is pretty true), we must make her appear very disabled. Elizabeth is in fact quite independent when changes are made to her environment to accommodate her. We will ask for the most services and support in hopes to get even picked up by PT and OT in the school (services here have taken a very big reduction).
In trying to find her daycare I am doing quite the opposite; centers that provide integration here are very limited which is very unfortunate. When explaining Elizabeth to the daycare I am calling I am not using all the labels she has been given which we will highlight at her school meeting. I tell the center she is a bit wobbly and may need a bit of support with some activities because if I do mention her labels I know I will get the 'I am sorry we cannot accommodate her' spiel. Once they meet her I hope they will she how determined she is and how she finds a way to keep up. I want them to meet her before they place judgment on her abilities by her labels. By omission and exaggeration I feel like I am being dishonest but I know this is how the game is played.
The Dr. Seuss game in the picture above is one of our favorites, it challenges Elizabeth with many gross motor tasks and before she completes the task she has to say 'I can do that' which of course she can but just with a bit of help.

SSSSteggie

Elizabeth now can say the 's' sound. She has been working very hard at speech therapy for at least the past year and now can say 's' unprompted. I love how she asks for her dinosaur steggie, she pronounces the 's' sound so well, it warms me each time I hear her. We are now working on her 'sh' sound which is coming along and she can now say it with prompting. Above is a picture which she took of one of her 'crew' as she calls them she also has a t-rex, triceratops and a pterodactyl. She totes these dino's everywhere she feeds them, talks to them and dresses them. She also loves to bring them to us each morning when she wakes, a roaring dinosaur in your ear at 6:00 is not my most favorite way to wake up but they are the closest thing we have to dolls here.

Confessions

I really try on our blog to emphasize all the amazing things that Elizabeth is doing because she wows us everyday but some days parenting Elizabeth is hard. It could be that Elizabeth is starting a growth spurt and I am sleep deprived because of her waking but I am finding myself short tempered with her. The things that she cannot control get under my skin and make me snap at her. She is very twitchy lately including in her sleep and her twitches include flailing limbs; her flailing knocks over drinks, sends cutlery flying, breaks things and leaves us in bruises. Her distractedness and impulsivity are pretty fierce right now and she needs constant reminders to pay attention to what she should be doing. I am constantly telling her to stop talking which kills me as we worked so hard to get her to talk but she often is too busy chatting to pay attention to where she is going and puts herself in danger. I hate to admit this but there are times when I want to walk without her because walking with her is still painfully slow. Because of her dystonic movements and her distraction walking with her feels like
I am in a funeral procession as we walk slowly to our destination.
I hate that I get upset with her because these are things that she cannot control. On a good day I try to teach her to be aware of others, slow down with her movements and think about what she is doing and we replay what she she should have done but on days like these I yell at her and put her on a time out which I hate. I constantly question myself am I being too critical, too short tempered and am I asking too much of her? I know I should be grateful of how far she has come along but sometimes I hate what her prematurity has done to her and how it has impacted our family.

Familymoon

We had a great familymoon in Holguin Cuba. It was our first tropical destination with Elizabeth and we all had a great time. Elizabeth loved swimming in the pool and the ocean. She was doing great at holding her breath while swimming so she could see all the tropical fish in the reef. Elizabeth LOVES the sand, she spent the first 10 minutes rubbing her hands in the sand thanking us for taking her to Cuba. Elizabeth also loves all living creatures and took great pleasure in chasing the lizards and toads, collecting starfish, sea urchins, shrimp and crabs and watching the bats fly at night. The food was great and Elizabeth ate like a champ; she devoured calamari, fish, soups, ice cream and slushy drinks. She made us so proud in the restaurants sitting so still, trying new foods and using her manners. We went on a excursion to swim with the dolphins and it was fabulous, Elizabeth loved petting the dolphins, getting kisses and watching the dolphin show. Each night Elizabeth took part in the children's mini-disco, the staff were great with her and she loved dancing and playing the games. We are happy to be home now and I love the fact I am not running her to bathroom every 5 minutes because she has drank half the pool and that we no longer have to use public toilets (that often do not have toilet seats) but we will miss the endless fresh seafood and the lovely warm sun. What better way to spend our honeymoon than with Elizabeth.

Officially Official

This event was well overdue but the wait was worth it. Elizabeth came early in more ways than one and Ivan and I getting married was put on the back burner. Ivan and I are fairly introverted people (except for the blog) and we wanted an event that was intimate and classy. I think we managed to do both we invited a small group of family and friends; had a ceremony at our local church and dinner at fantastic restaurant that we had rented out.
Elizabeth was great on such a busy day she walked down the aisle so proudly, by the time she got down there there was not a dry eye in the church including Elizabeth and her Daddy. She stayed with us for the vows and would say Amen at the appropriate times we were so proud of her. The only mischievous thing she did was trying to undo my dress, my maid of honour who knows her well was quick to intercept.
We had such an amazing day it was so great spend the day with our family and friends. We are so thankful for all the support they have provided us and that they were able to celebrate the day with us.

New Bike

We are super excited Elizabeth's new bike has arrived and it is super cool. Thanks to my amazing cousin who is currently living in the USA she was able to bring the bike here for us. We ordered the bike through my favorite store Target which we sadly do not have here in Canada. I heard some really good reviews about the bike at work and on-line so we thought this would be the best option for Elizabeth. Elizabeth still needs her feet tied to the peddles so a 2 wheeler with training wheels was a cruel and unsafe option. This bike is so cool it will grow with her and can carry up to 220lbs, even Daddy has been having fun riding her pink bike. We do have to make some adaptations as she is still small for it and she needs footplate's to secure her feet but we should have it ready soon.