Wednesday, June 24, 2009

Grapes rule but Abby rocks!

Abby discovered grapes the other night. She is slowly getting back to eating more solid foods. Especially if it is something we are eating. I took this video when she was on a definite grape sugar buzz and she is adorable. This kid has so much personality.

On a side note. The admin from Abby's school came yesterday to observe Abby at home with communication and how she chooses from her homemade flashcard book. Abby did very well-I was very very nervous. We don't know how we are going to be able to get her to respond this way at school because as I was informed,and already knew-Abby is only interested in socializing and being Princess popularity at school. She is only four so I am OK with it for now. The most important thing was that I had this very deep need to show them she COULD communicate and is aware and we accomplished this yesterday. Hopefully we can move forward from here.

Sunday, June 21, 2009


This is video we got of Abby walking yesterday. Since she was down with her surgery she has lost alot of tone and developed scoiosis. It took months to get her to where she wasn't hooked up and stationary more than not.I am still kicking myself for not getting her surgery done when she was healthier.

Abby had only been taking a few shakey steps between the entertainment center and the couch and sometimes she would just stand where she was and tremor or yell until someone came and got her. If we held her hand she did better but had lost most independent walking.

On Friday she just took off and let go. We got this video on Saturday. This is a weaker version of her at full strength but now I have some hope we can get back there. The penguin like gait is normal.

We are thrilled!

Friday, June 19, 2009

Stem Cell Breakthrough

Rett Syndrome and induced Pluripotent Stem cells goes “Green”

Wed at 1:03pm
Stem cell researchers at The Hospital for Sick Children have now devised a method, reported in the scientific journal Nature Methods, that will facilitate the generation of induced Pluripotent Stem (iPS) cells. I have previously blogged about the promise of iPS cells (see related articles). iPS cells are cells which have been reprogrammed from a differentiated somatic cell (such as your skin cells) to a pluripotent stem cell (like an embryonic stem cell, only that you don’t need to use embryos!). The generation of iPS cells is inherently very rare which occurs at a frequency of about 0.01% meaning you can generate about one iPS cell line out of hundred thousand cells. Out of which, many lines fail to satisfy the different rigorous tests necessary to be given the prestigious name of “iPS cell”.A group led by Dr. James Ellis, and lead author Dr. Akitsu Hotta, at The Hospital for Sick Children has generated a reporter, named EOS, that will facilitate the generation of iPS cells for both mouse and human. The reporter has DNA elements (called promoters) that will drive the expression of a fluorescent protein (GFP) and an antibiotic resistance gene (puromycin) that will only turn on in pluripotent stem cells, but remain off in differentiated cells. Therefore, scientists can now generate iPS cells from different sources and the iPS cells will literally “light up with a green colour” once reprogramming has been achieved. Furthermore, by adding puromycin to your culture, it will keep the iPS cells in a pluripotent state as iPS cells will normally spontaneously differentiate.
To demonstrate the applicability of EOS, Ellis also derived iPS cells from patients who have a neurodevelopmental disorder called Rett Syndrome. Rett Syndrome is an Autism Spectrum Disorder which affects almost exclusively females at an incidence of 1 in 10,000 and is one of the leading causes of mental retardation in girls. These Rett Syndrome iPS cells were green when placed under a fluorescent microscope and Ellis demonstrated that neurons can be generated from these Rett Syndrome iPS cells, the cell type affected in Rett Syndrome.
In conclusion, the EOS reporter will facilitate the generation of iPS and will be particularly useful for new labs going into this rapidly developing field. Furthermore, Rett Syndrome iPS cells that were also generated in this study will be invaluable for future drug screens that may be beneficial to those with Rett Syndrome.
Article:Hotta, A. et al. Isolation of human iPS cells using EOS lentiviral vectors to select for pluripotency. Nature Methods 6, 370–376 (2009).
Related articles:Breakthrough of 2008 – ReprogrammingA New Era for Disease Modeling and Drug Screening

Wednesday, June 17, 2009

What a difference a day makes

Yesterday Abby's adoptive grandparents came into town and took us to dinner. We went rather late so we were the only ones in the dining area-Everyone else was in the lounge. Abby was in rare form just one day after being so sick. She is being Miss happy flirty pants with her Dad and she ate a mess of french fries.This is only less than a minute but this was her the entire 2 hours we were there. I loved it and so did everyone else!


Monday, June 15, 2009


Thought I would post video I got the other day of The Wiggles coming on. Abby was hooked up to a feed but you can sure see her excitement. She is a blur at times because she was moving so fast. I love having something that can make her this happy.

She is sick this week from some sort of viral bug. Running a high fever and has lost 2 pounds we worked very hard at getting on her.

Good thoughts!

Saturday, June 13, 2009

Vampiress Spaghettilina!

This week I have really decided to focus on nothing but getting Abby healthy and strong. Getting the scoliosis diagnosis just a few days after the docs told me her BMI is still under 10% was just a kick in the gut.
We have got her feeeding up to 1200 calories a day with actual food twice a day. We have been going for walks twice a day to try to build up her core strength. Her Ped won't write a script for PT until he finds out what Ortho wants to do and Ortho can't see her till October so it's up to me until then.
Last night at dinner time Abby was eating a Beech nut meal(250 calories) of spaghetti rings. When we were ending the meal I had to get pics. She looked like a satisfied little baby vampire after a good feed. She had 550 calories at dinner alone. She's a studmuffin.

Thursday, June 11, 2009

Abby started her Summer session this week. She is still going Mon-Thurs but for only 2 hours a day.
We had a new nurse start this week. She has only worked 3 days so far but Abby really likes her. While she was laying down after school today she kept edging closer and closer to the nurse until she had her head against her leg then she patted her leg and looked up at her until she laid her up on her lap. Abby was very content. Really eases my mind.
Unfortunately our Scoliosis fears were confirmed this week. We had always hoped that since Abby could walk we might be able to avoid this but she lost so much tone and ability when she was down in January that she now has a 15 degree curve between her 1st and 4th lumbar.
Medicaid approved her wheelchair this week but denied her Gait Trainer. We had requested a Gait Trainer to help her with exercise and help build her tone back up so we are going to resubmit it. I can't imagine what they are thinking when they deny something like that but if I let that get to me too much I'd be in trouble because no is the norm for the disabled unfortunately.
The pic above is Abby this week waiting for the school bus in her borrowed chair. Hers will be much smaller and easier to transport.
Fingers crossed on the Gait trainer!
And thanks to those who have been contributing to her kiddie pool. We appreciate it!
Hugs and slobbery kisses!

Friday, June 5, 2009

Pizza Pizza!

Last night I had a go at my first attempt in years to make home made pizza. Needless to say Abby was very impressed. Daddy,however was not when his team scored during the Stanley Cup finals and my big behind was in front of the TV. You will be able to see the exact moment by the look on his face. It's priceless! At the end Abby started to giggle hysterically but I ran out of space. Nevertheless. This is a good one. And she ate half a piece!

Wednesday, June 3, 2009

Dentist Schmintist!

Abby went to the dentist yesterday and did a super job! They left her in her stroller to make her more comfortable while they cleaned her teeth,did the exam and gave her her fluoride treatment. NO CAVITIES! The Dentist was also very surprised that Abby didn't have any stains even on the back of her teeth.

We were concerned about her grinding especially since the teeth between her eye teeth and her front tooth are very ground down. The Dentist explained with special children as they grind the nerve recedes to protect itself and that it's very rare for them to grind to the nerve. Such a relief!