Sunday, January 27, 2008
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!
Friday, January 18, 2008
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.
Saturday, January 12, 2008
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.
Sunday, January 06, 2008
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.