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.