Merry Christmas

Elizabeth has had yet another amazing Christmas. Santa brought her exactly what she had asked for a Lightening McQueen race car that makes noises. Elizabeth loves the Disney movie Cars and loves anything to do with it, she has quite a collection of the race cars and she even has a Lightening McQueen pillow which she sleeps with. Santa also has brought her a play kitchen so she can cook with Mommy. Elizabeth attended Christmas Mass for the first time this year, she learned about 'Baby Jesus' and told the Pastor 'thanks' after she received a blessing. It was so much fun to see how much she understood Christmas this year and was able to participate in all the Christmas traditions and festivities.

This year Elizabeth also received a Secret Santa present from Lena and enjoyed dressing up in all the girly dress-up toys that Lena had sent. In joining a chat group for mothers who have children with Cerebral Palsy I have met a great group of women and this where her Secret Santa gift originated from.

Happy Third Birthday!

Lessons learned from barf.

Elizabeth like many preemies has an oral aversion which we first noticed when solids were introduced. We were lucky as Elizabeth never had a problem with taking a bottle or nursing, many preemies are so orally aversive that even a bottle is too much for them to handle leading to some babies being only fed by g-tubes. Nobody knows why they develop aversions but many hypothesies have been made; some feel there is connection with reflux, oral feeding tubes endotracheal intubations and sensory integration disorders. Dealing with an orally aversive child has been one of the most difficult things for us to work through. With lots of sensory play, slowly introducing textures, teaching her how to chew and bite, allowing her to help in the kitchen, distraction and positive reinforcement she now likes to eat. Her favorite foods are chicken nuggets (McDonalds), tacos, spaghetti, strawberries, hummus and dipping Oreo cookies into milk. Teaching her to dip foods was a great way to introduce two textures together which would normally lead to vomiting and has allowed her to try new foods and feel as foods they get soggy (which would lead to vomiting). Keeping her on her stomach medication is also a huge part her success. Dealing with her choking, food refusal and vomiting has been very difficult but as she gets older it is getting better. We still have lots of work to do but the most important thing is she now enjoys eating. Elizabeth is also reaching a huge milestone of no barfing for almost 2 weeks YIPPEE.
As we have plodded through her aversion and reflux we have learned a couple lessons;
-seagulls will actually eat barf in it's entirity
-cheese needs to be removed prior to washing as it melts in the dryer
-when holding a vomiting child do not aim over floor register/vent
-it is very hard to clean up vomit from vents in the floor
-ants are difficult to treat when in the vents
-the tune of twinkle twinkle must be avoided as it can lead to barf
-getting a cold chill after swimming can lead to vomit
-public pools do not have readily available supplies for cleaning leading Mom to garbage pick to find objects to clean with
-no matter how long time passes the smell of barf in the dryer is quite hard to get rid of.

Secret Spy Elizabeth

Getting Sassy

Elizabeth: Chicken, broccoli and rice not again!!!!

Mom: That is what is for dinner.

Elizabeth: I hate broccoli, I hate chicken and I hate rice! I am not eating.

Mom: Do you need a time out?

Elizabeth: Yes, I need a time out!

After a brief time out of singing in the corner, Elizabeth joined me at the table and picked at her dinner. I have heard that 3 is worse than 2, I think it might be true.

Enjoying the Christmas Parade with Olivia, Avery and Owen

Dress-Up

Rough Week

The grace period of no major illnesses since Elizabeth started school is past. Elizabeth began to run fevers at the beginning of the week and began to get a cold. Of course for Elizabeth getting a cold is never the standard course of a runny nose. Vomiting/choking is still an issue with Elizabeth and when she is sick it becomes even more prevalent. Her vomiting/choking has led her to vomit out her nose repeatedly which has led to aspiration, poor kid even the next day I find remainders of her dinner in her nose. Elizabeth with puffers and antibiotics has began to improve but still continues to vomit a the slightest thing because of this and her earlier weight loss we have put her on supplements. I am so afraid to see what her current weight is, even if she does eat she just vomits it up with the slightest cough. We were able to call her ENT and he has agreed to see her next week at Sick Kids, hopefully he can speed up her swallowing study which will hopefully tell us why she chokes so often.
To top everything off Elizabeth has another urinary tract infection the last one being in September. Because of the close proximity of the 2 infections she will be sent to a urologist and will have a VCUG. A VCUG involves catheterizing her and filling her bladder while she is partially sedated which is not something we want to put her through.
As she is not at her best her walking is so unsteady she is falling everywhere and needs us to be there at all times. Every time she gets sick she becomes so unsteady and falls so behind and also misses so much therapy.
A huge thank you to Grandma this week for helping watch Elizabeth while Mommy and Daddy work. Without Grams Mommy would not be able to work.
Despite being sick Elizabeth is happy and taking advantage of the fact thatwe are letting her watch a more TV than usual.

New Belt

We have given Elizabeth the belt! No she is not in trouble but she is now sporting a 2lb weighted belt. We have been trying various ways to help with her balance and provide support, including theratogs and the benix vest and have found the added weights provide some stability. Sitting at an unsupported chair is becoming difficult and Elizabeth fidgets, sways and wiggles until she ends up standing by the table to do fine motor activities. With the belt on, she has been able to sit on her little chair for prolonged periods and can use her hands better as she is not trying to balance herself all the time. The difference is really remarkable.
With walking the belt seems to keep her grounded and more stable. The belt is only worn for short intervals to avoid extra strain on joints. Elizabeth calls her belt her 'secret agent spy belt' (Backyardigans) and thinks it is a great addition to her wardrobe.

Triple threat...

With so many choices, it was hard for Elizabeth to make up her mind what to be this Halloween. So, she was a ladybug, a cat and batman this year. The batman costume was actually a loner from Owen (Elizabeth says Thanks! and promises to give it back).
In the last photo, the three little goblins (Owen, Elizabeth and cousin Madison) are gearing up to go out and get some sugar.

What's New

Elizabeth is having a great time at pre-school and until this weekend been healthy despite being with other kids. Elizabeth has even introduced herself to the class fish by reaching her hand into the tank and grabbing him, we hope the fish survived.
Elizabeth saw her Developmental Pediatrician and she was pleased with her progress. Her feeling is that Elizabeth is showing signs of cerebellum damage (ataxia) but we will not get the proper diagnosis until next year as there is a wait list of a year for MRI's here. She feels that in time in her brain damage will be more apparent as fine motor skills are developing. She had said kids similar to Elizabeth may have difficulty with printing, catching a ball and riding a bike. Cerebellum injuries are very similar to being drunk and her difficulties are similar to a person who is intoxicated. On her assessment Elizabeth weighed 24lb 10oz, which was less than her August weight.
Elizabeth has been eating like a champ she tells us she is an 'eating machine', she still needs to be watched carefully for choking but is eating anything we put on her plate. She has even started to bite foods which is a huge achievement. Elizabeth loves broccoli, meat of any kind, cheese and oranges.
Currently Elizabeth has a cold and nasty gastro which has left her with days of diarrhea and diaper rash. She is still happy and is getting ready for Halloween.

Princess Party

Friends

School Field Trip / Collecting Snails

We take one step at a time.

Getting Elizabeth to her class at school is not one of my favourite activities in the mornings. It is a busy place lots of kids and parents coming and going. To get Elizabeth to her class we need to go down a set of stairs and drop off her bag at her cubby and continue up 2 sets of stairs to her class. Stairs are a challenge for Elizabeth she still requires complete assistance to get up and down, she needs cueing for each step and reminders for her hand placement. I really want to pick her up and carry her to speed up the process and avoid stares but this important for Elizabeth to learn as she needs to be independent. I really try to keep to one side to let everyone pass but one mom persistently tails behind us complaining the whole way. "I have places to go", "we need to hurry up" she tells her daughter behind us. Yes at one point I had places to go to but then came Elizabeth and she brought my life to a standstill and now to pace in which we can stop and admire everything on the way. Yes we take one step at a time but we see and experience more along the way.

She continues to shock and awe.

Elizabeth had her hearing checked again at the Hospital for Sick Kids and wowed her audiologist Vicki. To check Elizabeth's hearing at her AV therapy and at home we have her put a puzzle/peg to her ear and place it when she hears one the Ling's six sounds (ah,oo,ee,mm,ss,and sh). Elizabeth at times has difficulities with the shh and sss as they are high frequency sounds. Elizabeth sat in the sound booth with her headphones and correctly placed all the pegs. Her audiologist could not believe how well she has done. Auditory Neuropathy continues to be such a puzzling diagnosis and often parents want to rush in to get implants. Elizabeth has shown them that waiting to see can be okay and beneficial. She will continue to go every 4 months for checks as with AN hearing loss can fluctuate.
Her preschool is still trying to figure how she has a hearing impairment as she talks so well. She recently asked 'if Daddy was an alien?' and 'where was the deep space signal?', she makes me laugh with her constant curiosity.

We need to get out more.

'Oh my goodness, oh my goodness we are going to a grocery store' squeals Elizabeth as I pull into our local grocery store parking lot. Elizabeth could not believe I was taking her to buy groceries. Ivan and I have always saved our errands for when the other parent can stay at home with her. Guilt plagues me every time I have to take her out to do something that is not associated with one of her therapy goals. I count the wasted minutes spent in the car or in a grocery cart as time I have not spent working on her walking or providing sensory stimulating activities for her to do. From the glee in her voice about getting to go to the grocery store I know that this is something we will have to involve her in. Besides we can always work on her Auditory-Verbal therapy goals while we are shopping, we are currently providing descriptives for her to tell us what an object is 'I am looking for something that is yellow, a fruit and you can peel it'.
Elizabeth got her first haircut by our friend/hairdresser Helen. Helen was the only one who could help us with the lipstick disaster we had (note pink near Elizabeth's mouth). With Helen's lipstick remover we were successfully able to remove the lipstick from Elizabeth and our leather furniture.

First haircut

shopping for groceries

SHE'S WALKING!

All the hard work Elizabeth has done has paid off. She is walking without her walker on her own. She is not quite ready to transfer her new skill to the great outdoors due to frequent falling but at home and even at school she is walking. Her walk is quite unsteady still and she is learning to navigate around uneven surfaces and objects but SHE IS WALKING. We are in awe when we hear a little voice behind us and there she is standing there on her own after having walked into the next room. Way to go Elizabeth we are so proud of you.

First Day At School

Elizabeth has started pre-school and is loving it. She is the only child in her class who does not cry when I drop her off, this has made the transition for mommy so much easier. The staff at her school were so surprised at how well she has done and that she is always happy.
Elizabeth has also found a new appreciation in make-up and while Mommy was getting dressed this morning got into Mommy's make-up and applied the 12hr lipstick to compliment her outfit. As the lipstick is designed to last all day it would not wash off so Elizabeth went to school covered in lipstick and is now in bed with the lipstick still on.

Our First Vacation

Our first family vacation was amazing! We spent a week in Prince Edward Island with Amy, Max and Owen at Max's mom's summer home. PEI is a beautiful island with so much to do, a week is not long enough to experience everything it has to offer. Elizabeth was able to enjoy her vacation with her best friend Owen, the two were joined at the hip they did everything together and even had their baths together. Elizabeth was so excited to go in an airplane for the first time and did great on the plane watching movies and reading books. The weather was perfect, we were able to enjoy a day at the beach. Elizabeth loved digging for potatoes in the potato field, digging in the sand, looking for crabs and lobsters and just hanging out with Owen. Mom and Dad were even able to enjoy time away doing girls (pedicure) and guy stuff (golfing and fishing) with Amy and Max. Max's family were so friendly and made us feel very welcome, they even had a kids party with games, food and a petting zoo. Elizabeth did not want to get out of the pig pen at the party and was amazed by all the animals. We want to give a huge thank you to Nelly and all her family for their hospitality.

PEI was just amazing

Here are some photos from our very first vacation...

PRESCHOOL!!

Where did our baby go? How did she grow up so fast? We can't believe only 2 weeks until Elizabeth starts pre-school. Elizabeth will be attending pre-school 2 mornings a week in September at a center near our home. It has been a lot of work getting this far, integration continues to be challenge in our city and finding a center for Elizabeth was not an easy task. Elizabeth is such an easy going kid and so much fun that I found it quite hard to believe that many centers would not take her because she is not walking. After meeting with the regions supervisors, writing letters to the government, the mayor and the papers we found a spot for her. Elizabeth will be attending a school that has only 6-8 kids in her class, has appropriate acoustics for her hearing, has 45 minutes of gross motor (it is also a dance school). I don't want to get too excited until she has been to school and everything has been worked out but it seems like the perfect place for her.

Here was the letter that was published in the paper.
Two years ago our daughter Elizabeth surprised us by being born 3½ months early weighing only 1 lb 9 oz. As Elizabeth was born too early she has faced many challenges with her development. She has to work very hard to accomplish what comes naturally for other children. Elizabeth is a very happy and social child who loves being around other children, so enrolling her in a nursery school program seemed like the next step in Elizabeth’s development. Because Elizabeth has some developmental challenges she requires an integrated placement which can provide support for both her and her teachers in the school we have chosen.
Our search for a nursery school placement has been an upsetting journey. Visions of dropping off our daughter at a center in our neighborhood have been halted. In the search for a nursery school for our daughter I have been dumbfounded by the fact that in the year 2007 a child with special needs does not have a place in the area which she lives. We have contacted numerous schools and daycare centers to find a placement for our daughter and have been ignored repeatedly, told to call back when our daughter is more “age appropriate” and that she would be welcome but would need to stay in the baby room until she can walk. It is very upsetting to see how hard our daughter works and all that she has had to overcome and for her still not to be accepted by her own community.
We as Elizabeth’s parents are writing to ask all child care centers, child educators, government agencies and the community to accept and advocate for children with special needs. Children with special needs are not the only ones who benefit from integration, the community as a whole can learn from these precious children.

Maybe some answers???

We have been waiting for quite some time to see a neurologist to discuss our concerns with Elizabeth's difficulty with walking. Her original diagnosis of Spastic Diplegia has been questioned as she does not show the signs of tightness that was originally thought. The neurologist we met also agreed that Elizabeth is not spastic or showing low tone as was also questioned before. He feels that Elizabeth sustained an injury to her cerebellum or basal ganglia either from hypoxia or a genetic condition. These injuries often manifest in difficulty with balance, attention difficulties, problems with cognitive-visual skills, articulation problems and difficulty with swallowing.
I almost fell off the chair when he mentioned swallowing difficulties, Elizabeth still has a lot of difficulty with eating and has a huge choking spell once a week. She continues to have difficulty with thin liquids and cannot be left unattended while eating or drinking.
The neurologist will be arranging an MRI to hopefully give us some answers to our questions. I felt quite comfortable with this doctor and didn't have to fight to the normal response of 'do you really need to know why?'. For once I left a doctors office not feeling defeated and without answers.
Elizabeth was such a good girl for the Doctor and was very cooperative with all of his testing.

How can you not like the wiggles?!

How Elizabeth Amazes Us

Elizabeth continues to amaze us every day and brings us so much joy. Her amazing spirit and outlook on life is what is so remarkable to us. Elizabeth rarely cries, pouts or has a temper tantrum, she is always singing, smiling and finds joy out of every experience. I think this is what we are most thankful for. Her perseverance, all of the normal milestones have provided a challenge for Elizabeth but she continues to persevere and will work until she can do what she wants. Nothing is a challenge for her in her mind. Her curiosity, she soaks up new information like a sponge and will remember the most intricate detail of anything. Her passion for life, she loves nature, animals and her friends (She just recently while going for a walk stopped to introduce herself to an ant and tell it is was nice to meet it). Lastly her endless energy, she never tires she is up to any challenge or activity everything for her is fun.
We are so blessed to have her in our lives. She makes the rough days better as she is such an easy going child who never lets anything bother her.

In the first picture she's relaxing with Owen. In the second picture Elizabeth is riding a pony for the very first time.

Summer is going by too fast... Elizabeth has been a busy girl. She's been to see the animals at Bronte park and the African Lion Safari, she's gone to Niagara Falls, her grandparent's cottage (with best friend Owen), she has also been swimming, playing at the sprinkler pads and has just kept her parents busy. Along with having fun, she has also worked very hard. To prepare for nursery school, she has attended a morning playgroup on her own twice. Her teachers couldn't believe how bright she is. Hopefully, she can attend preschool in the fall, but since she is not walking yet, this maybe a problem. Elizabeth is still attending all of her therapy and is doing great. She also has a worker (Erin) who comes to the house to help with Elizabeth. She loves hanging out with Erin.

Elizabeth and auntie Maria.


Posing with mommy.


On the red carpet.


Chillin' with pals Avery, Ashton and Olivia at Olivia and Avery's 2nd Birthday Party. It was a blast!

Our Party Girl

Elizabeth has been busy as usual ,she is enjoying the warm weather and is spending lots of time outside playing. Elizabeth has been quite the party girl and has attended many social events; Olivia and Avery's 2nd birthday party, Owens birthday party and Auntie Maria's wedding. Elizabeth was a flower girl at Aunt Maria's wedding and did a wonderful job at walking down the aisle with Mommy and loved dancing on the dance floor with everyone. When Elizabeth got into her pretty dress and saw Mommy in hers she said "ooh Mommy and Elizabeth are princesses".
Elizabeth has wowed everyone with her talking and recently was scored as having language skills between 36-40mths which is amazing for her as she is only 27mths. Walking for Elizabeth is still a challenge but she is getting better each day, she can now walk across the room to her parents independently, she is getting proficient at bending down to pick up toys and is getting up with minimal help. Mommy and Daddy have to be creative to get her to walk independently her favorite games are playing mailman, grocery shopping and playing garbage man.
Elizabeth still continues to have problems with her reflux and still requires medication, we were hoping she would outgrow it by now but it still is a problem for her. Elizabeth also is waiting to see an ENT Dr. as she continues to choke and has to be watched closely while eating. We are not sure whether she has some scar tissue which is causing her difficulties or if she might be aspirating at times, as she can get quite panicked when it happens and she often goes bluish.
We are daily wowed with our princess and all that she has overcome.

Today was humid

At 27 months, little Elizabeth keeps her parents very busy. She's very chatty and likes to talk from the time that she wakes up until she goes to bed. She can count up to 5 and recognizes familiar words.
A couple of weeks ago, Elizabeth had her hearing tested again at Sick Kids and the results were consistent and showed minor hearing loss in the high frequency, so she has difficulty hearing and repeating "f", "s", "sh" sounds. Overall her hearing is amazing. As with the rest of her preemie follow-ups: her eyes are doing great, although she barfed on her eye doctor because she was upset.
Recently she has met all 3 of her pediatricians and all of them are not sure why she is unable to walk. She doesn't seem to have spastic diplegia CP as was thought previously. It seems that she is having problems with balance and we are going to see a neurologist. Her Dr suspects that she may have ataxic CP or has had an injury to her cerebellum and that an MRI will be necessary.
She is progressing with physio and can walk while holding on to only one hand.
She has some new faviourite activities: rides in a bike trailer and getting dirty in her new sandbox.

Easter past and present

Playing dress-up

Easter is coming

Elizabeth has been home for 2 years! We are very proud of what she's accomplished and the many challenges that she has overcome. From the moment that she wakes up until she finally falls asleep in the evening she never stops talking and singing her favorite songs. She is starting to talk in short sentences and even recognizes letters and the words Mama, Dada & Elizabeth. Elizabeth continues to work very hard at all of her therapies. She loves the treadmill at physio and has a great time at Medek therapy.
Elizabeth has also been very busy shopping for her spring wardrobe at the mall using her walker.
Her eating has improved a great deal. Elizabeth still needs to be watched while eating to make sure she doesn't choke, however she is experimenting with new foods and new textures. Loves the jello! (two months ago she would have thrown up if she touched it)
As result she is now 23 pounds.
Elizabeth can't wait for Easter. She is decorating the house with her Easter crafts and humming Easter songs.

Baking cookies

New boots

Elizabeth was recently fitted with a new pair of ankle foot orthotics. About a week before Christmas, Elizabeth's developmental pediatrician diagnosed her with cerebral palsy (spastic diplegia). The reasons for this diagnosis were that Elizabeth is still not able to walk and her feet are pointing out and rolling in. Shortly after Elizabeth was born she had developed a grade II brain hemorrhage and enlarged ventricles which may have caused her CP.
The orthotics that Elizabeth wears appear to be helping her and just lately she has been able to stand unsupported for 1-2 minutes. She continues to go to CME Medek which will be Elizabeth's key to walking independently.
She continues to work hard in Auditory-Verbal therapy, occupational and physical therapy as well.
Along with the many appointments, Elizabeth spends the better part of the day doing exercises and practicing speech. Her mom and dad often try to incorporate all her therapy into play activities.
Elizabeth is a very happy girl, she sings to herself while she plays. She surpised her parents by recognizing several letters of the alphabet (A, B, D, E, L, M, O). She can even say a word that starts with each letter.

After a mild start to winter, there was finally enough snow to go tobogganing. Elizabeth and her best friend Owen had a great time in the snow.

Tobogganing in B-town