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.