Thursday, June 2, 2016

Stanford MRI / NIRS Research

We are currently participating in a longitudinal 5 year study on girls with fragile X. Today was the last day of the first research session.. At Stanford

We had two main activities.. To complete, the NIRS and an MRI.

Yesterday we did 4 hours worth of cognitive and language assessments and eye tracking data collection.. Then Holly did a practice MRI while I was doing a parent interview.. I was told she did great and hoped we could immediately complete the real MRI but there was no availability..

I'm sad to report that my fear came to reality and given a day to perseverate on the upcoming MRI Holly ended up having a panic attack and we only got 1 partial scan of the 3 needed. 

She went in with a great attitude  and they let me stay in the room with her but she could not see me. Apparently during the practice she could see the researcher the whole time and she talked to her quite a bit.. Because she couldn't see me she got sad and then anxious and then panicky.. 

The first scan completed but was a bit blurry.. She was crying :-( she came out of the MRI and I tried to calm her down, give her a hug and told her I would stay holding her foot and sing to her. She said she was ready to try again but never really calmed down enough to stay still... So the second scan didn't come out.. We decided we could come back and try a sleep scan later in the summer.. 

I was disappointed because she had done so well yesterday and she was sad she didn't finish but told me she couldn't help feeling sad and alone.. I wish I had known it's possible it could have gone differently.. Really I wish I didn't listen to the researcher and trust "how good" she did in practice.. I was complacent and didn't make all the extra efforts I may have to ensure her comfort.. And help prevent her nervousness..

But it is what it is and we will try again.. She was sad she didn't get a picture of her brain to take home but the researcher said she would email me one.

Earlier today we were successful in completing the NIRS 

"The primary application of NIRS to the human body uses the fact that the transmission and absorption of NIR light in human body tissues contains information about hemoglobin concentration changes. When a specific area of the brain is activated, the localized blood volume in that area changes quickly. Optical imaging can measure the location and activity of specific regions of the brain by continuously monitoring blood hemoglobin levels through the determination of optical absorption coefficients..... 

NIRS can be used for non-invasive assessment of brain function through the intact skull in human subjects by detecting changes in blood hemoglobin concentrations associated with neural activity, e.g., in branches of cognitive psychology as a partial replacement for fMRI techniques.[7] NIRS can be used on infants, and NIRS is much more portable than fMRI machines, even wireless instrumentation is available, which enables investigations in freely moving subjects.[8][9] 

However, NIRS cannot fully replace fMRI because it can only be used to scan cortical tissue, where fMRI can be used to measure activation throughout the brain. Special public domain statistical toolboxes for analysis of stand alone and combined NIRS/MRI measurement have been developed"

After set up I was not allowed to stay for the assessment, when I asked Holly what they did she said she looked at pictures of people and faces and some were upside down and some were of statues..

While I've wanted to connect with research at Stanford for a while and in theory it is closer I think so far I far prefer UC Davis Mind Institute were we've done all our previous studies.  They have rooms with two way mirrors so I can watch and/or be included in all assessments and they have a really nice waiting and play area.. And though it's more miles the two days we just participated in racked up 185 miles and with all the traffic is was as long if not longer to commute.. Also in the study in particular because they are working with UNC on this study they had to use an off site MRI machine that was at El Camino Hospitol in Mountain View (has to be the same model/type and stanfords are different) though it was supposedly only 6 miles south it took us 40 minutes to drive there and added 30 minutes to our drive home... That's peninsula traffic for you.. Though we took 280 up to SF and it was beautiful and foggy..

Anyway I've been fighting allergies and a possible cold this week too and we are now all officially worn out!!

Friday, March 25, 2016

Nature Imprinted Easter Eggs

OMG I am so in love with my Easter Eggs! I can't wait to show Holly in the morning! 

Inspired by a Facebook video I saw earlier this week I decided to do nature imprint eggs.. Lyra and I headed to Berkeley Bowl to grab some beets, (which I freeze and use for smoothies and decided to use instead of the cabbage or onion skin in the video) 

then we went to walgreens to get some hose... Finally we picked up Holly and Oliver from School.. 

We were early and Holly was in the garden so Lyra and I decided to find some leaves and flowers lying around in the garden to collect for our imprints.  When we came home Oliver and Holly got a few more plants from the back yard.

It was pretty fast and easy to set up.. Just put the stocking over your hand, choose the plant you want to use and then pull the stocking down to cover the egg and hold the plant in place.. Tie a tight knot.

Before you know it -it was like an assembly line with the kids taking turns.. This part went really fast..  We stopped for a strawberry break and decided to use the stem!

The kids had a lot of fun and holly decided to make arm bands with the left over toe cut stockings...

Then it was time to clean up the mess, chop up the beets and set everything in the pot to bowl...

As instructed by Joel (on how to both cook beets and boil an egg..) I let the water come to a bowl and after about a minute turned it off and let everything sit and soak and cool and soak...

It was at least 45 minutes when Oliver's dad arrived... The eggs were cooked and Oliver wanted to bring home the favorites he made but almost no color seeped in by then... 

So I let them sit and waited and waited and waited at 9:00 when they were just barely tinged with a pale pink I added a splash of vinegar a few drops of food coloring to the pot.. And waited some more... until 11:30 pm and voila!

Then it was the long messy process of cutting of the hose and washing off the plants... I think they are gorgeous!  It was cool how there was a tie dyed like spot where the know was..

And this one I think color transferred from the plant as it was some type of bright pink leaves..

There were from the strawberries...

We even used some cilantro that we got Joel for dinner..

This was one of my favorites.. I had thought the plant got crushed in my pocket but I blew on it in Holly's hand and all the little fine leaves spread out to make this miniature tree.

The larger greener leaves seemed to work best.

This one was cool.. It was another pink flower and I think some of the color must have transferred.. It's very subtle but pretty..

This was white flowers and the stem part worked but the dye went right through the fragile white leaves..

Another of my favorite a leaf pulled right from the bunny rabbit out front.. 

Another favorite looks like some type of sea creature.. This if from the bright orange flower.. One Lyra got in the garden..

Two of the eggs cracked.. But I thought this was still pretty like a crescent moon..

And there you have it!

My sister and I are taking the girls to the beach and then Disneyland starting this Saturday for spring break.. Since we will be traveling on Easter I was almost going to just skip all the holiday rituals.. But I just couldn't help myself and there you have it a dozen plus pink hard boiled eggs so snack on while on the road and to leave with Joel so he doesn't miss us too much!!

Happy Easter!