Now that she's 3

A well needed update is overdue. Elizabeth is feeling much better from her latest illness and is now fully recovered, no more shortness of breath or hacking cough. We had tried Slippery Elm that was recommended by Kathryn, it can help rebuild the cilia in both the respiratory and gastro-intestinal tract and it really seemed to lessen her bought of pneumonia.

As for language and hearing Elizabeth has been discharged from the Infant Hearing program. Elizabeth since she was 4mths old has had a teacher from the school for the deaf come and work with her twice a month. On her last assessment Elizabeth's language is falling in the scale of 48-54 months which is amazing. It was kind of sad that she was discharged as her teacher was one of the first professionals in Elizabeth's life and we really enjoyed the visits. She still attends bi-monthly Auditory-Verbal therapy and there we are working on articulation and improving her listening skills. We go to have her hearing checked next month and on each visit her hearing has improved. Through a private SLP we are working on oral motor skills and Elizabeth is learning to lick and blow objects which really have been a challenge for her.

Elizabeth still attends physiotherapy 1-2 times a week and we are working on her balance, improving her trunk stability, walking up stairs and awareness of her body and her surroundings while walking. We recently returned her walker as Elizabeth no longer uses it, it would be nice if she used it on her wobbly days but it cannot go as fast as her, therefore she leaves it behind in her dust. She walks independantly in smaller areas and holds our hand while we are out as she is not balanced and is not ready for uneven surfaces. Daddy has made her a balance beam and boxes to step on and we make obstacle courses which she enjoys.

With her occupational therapist we are working on self-help skills (dressing) and improving her fine motor skills. We really have noticed how important her positioning is and through lots of trial and error have discovered that she really needs a supportive chair to help allow her to complete fine motor activities.

Elizabeth contiuues to be a hard worker and enjoys seeing all her therapists. Now that she is older we all have to be creative and find ways to keep her motivated and for her to have fun while working as it such a big part of her life.

The Inevitable

We knew it would come and we are really lucky that Elizabeth had lasted until February before she got really sick. Elizabeth has been battling a cold for the past week which had the appearance of RSV. Every night I would listen to her chest to make sure it was clear as she had high temps and a congestive cough on Friday when I got home from work, Grandma was quite concerned as Elizabeth was very restless, short of breath and her cough was even worse. When I listened to her chest I heard crackles in her right lung so off we went to the hospital. After nine hours of waiting they confirmed what I had told them nine hours earlier that Elizabeth had pneumonia in her Rt. lower lobe. Elizabeth really didn't enjoy the x-ray this time as they pinned her in a tube like contraption, last time she happily called out cheese when the took her x-ray. Elizabeth was so good she hardly complained despite feeling very unwell and staying out until 3:00 in the morning. She is now on the mend on antibiotics and her puffers, she still gets out of breath quickly but is beginning to catch her breath enough to boss us around and has started walking again. Every time she gets sick she goes right back to crawling as she is so off balance. She again is enjoying the opportunity to watch all her t.v. shows, having breakfast in bed and getting out of therapy (she missed 6 appointments last week). Hopefully she will be better by Valentine's day, they are having a Valentine's dance at her school and she has already chosen her dance partners (Owen and Cormick, she really has a thing for blonds).

Getting into trouble

We now have a few new additions to out family, 6 fish and a snail. Elizabeth loves to watch the fish swim around and loves to help feed them. We are not sure how much the fish enjoy Elizabeth as she loves to bang on the glass and scare them, we have nicknamed Elizabeth Darla from Finding Nemo as she would shake the fish until they were belly up. Along with the fish tank came new things to get into fish food which Elizabeth got into and spilled on the floor. Elizabeth also decided to try the "fish food" as she called it and drank aquarium conditioner. This necessitated a call to poison control who allayed our fears as the chemicals it contained were not enough to do any damage. Daddy has now swore he will never cook again as he was making dinner while she got into trouble. Elizabeth now enjoys Pizza Pizza while Mommy is working.

Getting Dressed

As Elizabeth is getting older we are trying to find ways in which she can do more things on her own. Elizabeth is now 26lbs and by the end of the day has Mommy tired of bending and lifting to help Elizabeth with her daily activities. 26lbs does not seem heavy at all but she is now 25% of Mommy's body weight. Getting dressed is a difficult activity for Elizabeth it requires balance and coordination and for someone with Ataxia it is a big hurdle. Normally getting dressed involves Elizabeth falling over, not paying attention and swaying. The more she has to balance the more she sways and sings (when I hear 'doodoodoo' I know I have lost her) it usually ends up with me getting mad and me dressing her. Getting dressed was one of the activities that drove me nuts, I hate getting mad at her as it is not her fault and I know she needs to learn on her own but on days when we are rushing to get out it is maddening. Her Occupational Therapist recommended a dressing stool/bench, by using a bench Elizabeth can lean to get support and can stand up with minimal assistance to help pull her pants up. Daddy went to work and made her a 'princess dressing bench' which we love. Getting dressed is not stressful and another strain to my back. Elizabeth can now help pull her shirt off and slides her feet into her pants without falling over, it really has worked well. Thank you Daddy, the princess bench is great!

A New Year

We have decided to dedicate the 2008 year as "The Year of Less Barf" (note I did not say none I still am realistic). The past couple of months have been quite barfy for Elizabeth due to many reasons all which we will pursue this year. Reason for barfing are many and as Elizabeth is getting older it is getting better but still is an issue. December was the breaking point for us when Elizabeth said 'Mommy I am afraid to eat", this was due to 10 days of vomiting straight due to a cold. I keep thinking there has to be something we are doing or not doing to contribute to this and am determined to find a way to have less barf.
Our plan of attack has brought some answers already and have allowed her almost 3 weeks of no barf (a miracle), it was ended by a flu bug but it was great.
1. Change homo milk to soy (this has made a huge change already no regurgitation and an increased hunger).
2. Avoidance of new identified food allergies (egg and tree nut, we are now equipped with an epi-pen).
3. A new pediatrician (who recommended 1, 2& 4).
4. See a gastroenterologist (about time).
5. Private speech and language therapist who will work on incoordination with feeding and swallowing.
6. A new ENT (one who is not obsessed with her ears, who will find why she barfs out her nose).
7. A swallow study to rule out aspiration and find out why she changes colour with cold foods (long waitlist).
8. Diet changes (thanks to Kathryn who is a wealth of knowledge regarding Nutrition and an amazing mom).
9. Flax oil (we have been slowly adding it to her milk, thanks Kathryn).
10. Slippery Elm to help repair all the damage that reflux does to her stomach (thanks again Kathryn).
11. Music Therapy (to help us work through her slow song = barf dilemma).
12. A new chair to eat in, a supportive chair slows her swaying and helps her to concentrate on the task.
So far things are working quite well for Elizabeth, she looks healthier and is enjoying her meals. So far she hasn't noticed some of the things I have been hiding in her foods, Daddy has though. It is amazing that ground turkey and minced carrots are hardly detectable in a taco.

Birthday Celebrations

As Elizabeth was sick on her birthday for the second time in a row her party had to be rescheduled to today. Unfortunately December has never been a good month for us here and Elizabeth spent her birthday with 8 days of vomiting. Poor kid when she gets sick she really gets hit. We chose to have Elizabeth's birthday at Gymboree as she loves going there and really gets a good work out. She had a blast with all her friends playing games and singing songs. Elizabeth was so excited and really understood that today was her day and loved getting to go first at all the activities. One of her favorite things was her Nemo cake that she chose, she kept checking on it during the party and when one of the games was jump in the cake she took it literally and began to cry. Pizza's were ordered in at lunch and she sat happily with her best friend Owen and ate, it was crazy to watch as she sat there on her own in an unsupported chair and ate with her friends. She is really growing up. A huge thank you to all her friends and family who came from near and far to celebrate her birthday.

We love it!

Elizabeth now that she is 3 is becoming quite a mischievous girl and is getting into all sorts of trouble this week. In the summer we had converted Elizabeth's crib to a day bed and equipped it with a baby gate to prevent her falling out. For months and months Elizabeth has never tried to get out of her bed, she calls in the morning and we go and get her out. While lying in bed in the morning trying to get up (Elizabeth wakes at 6:30) but hoping for an extra 1/2 hr as I am working night shift I hear little feet pitter patter. Jumping out of bed I find Elizabeth teetering at the top of our staircase ready to step. Since Elizabeth has started walking stairs are a danger as she thinks she can just walk across to get down.

Being so impressed with her new skill we called Daddy at work to gloat over her new accomplishment. When it was time for her nap today Elizabeth being too impressed with her new skill decided naps were not for her and climbed out of her bed repeatedly. The first time I found her in her chair reading books, then she was caught emptying her dresser of all her clothes and then in the bathroom looking for trouble. Each time she would say 'good morning Mommy I had a good nap'.

As Elizabeth has discovered her new skill this may be the end of her naps, which for me is quite saddening but in the same we are so excited that she is beginning to climb.

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.