House Party @ Ikea!

Sleep MRI

Here we are heading into the MRI. We had been practicing by wearing head phones and listening to the MRI Sounds really loud. Holly skipped her nap on this day so she was super tired. We came in her Pajama's ready with her Blanket and Paci. I brought a blanket from home that she likes as well. After exploring around we went into the MRI room which they made up sort of like a bead, with a table that I could also lay down on. We laid on it together, had Holly all tucked in with her headphones on and gave her a Chocolate milk bottle. Then we turned the lights off as much as we could and let her fall asleep. I was a little anxious and kept getting up before she was in a very deep sleep, so they told me to chill and just let her take as long as she needed. Once in a deep sleep her head needed to be lifted up slightly into the holder. Then I had to leave the room and the table she was on went into the machine. I was not allowed in but one of the administrator's was. She watched for any movement. there was an emergency stopped if she work up where the table could be pulled out within about 30 seconds. She did the emergency stop thinking Holly was waking up about 10 minutes in, but she had simply dropped her blanket and though still asleep her hands were a little frantic looking for it. So they didn't pull her out all the way. Luckily the first of three MRI Scans had been done and they were only a few minutes into the second. So they simply started the second over and then completed the third.

We got to watch on the computer screen during the scans and they showed us different parts of her beautiful little brain afterwards. And of course we were able to learn a little about the research they were doing. We later got a video cd with the MRIs on them. Unfortunately there wasn't a functional MRI since she was sleeping, so it was not the kind where you could see certain parts lighting up but instead a picture of her brain. They were going to use it to compare with kids who have Autism, and who have both Autism and Fragile X. using the three samples they were able to see where there are comparisons and differences. this is like a very very over simplification of it all, but the jest of it. Holly was the first Fragile X Girl to participate in the Sleep MRI Study, and the Youngest of all Kids in the study. They were really super excited to get all three scans completed, she was a star for the day. Later we picked her up and brought her to the car to head back to our room and sleep for the night. The next day we had more testing, but mostly eye tracking and stuff for Mommy to do. It was overall a very productive visit.

Mind Institute

These are pictures from our last visit to the UC Davis Mind Institute. It was actually in the summer and we were scheduled for an Sleep MRI study. We stayed the night across the parking lot in the Kiwanis house which was nice. This is the playground and there was a play room. it was a good visit. Mommy also participated in a carrier study, they did IQ Testing and some other balance and tremor related testing. We met with Dr. Hagerman and did a Mullins test as well. It was decided that Holly would continue on the Minocycline as her development had made additional great strides and we were seeing no ill effects. Her visual processing was at the 52 month level and at the time she was only about 40 months. She got really tired during the testing because they started off at her last level but she was doing so well the 45 minute test was lasting over two hours and except for the fact that she was not tired and cranky she might have been able to keep going. Most of her skills were at the 34-36 month level so only a few months behind but where the really amazing this occurred is the time we went in previously she was at the 24-28 month level and only 3 months had passed giving the greatest improvement of 10 months during a 3 month period. We are supposed to be going back in the next month or so but now we are having trouble getting a research appointment, the next opening being in August. There may be a cancellation at the end of the month so I am hoping we will be able to take that slot. A few weeks ago Holly had Zinc and ANA blood tests done and it has been another 6 months on Minocycline so I want to do a follow up. I guess we will see.

MRI Practice

Day 5 of MRI Practice is going well. Holly hates the ear plugs and swats my hand away in her sleep whenever I try to put them in her ears, but the Noise Cancelling ear Phones seem to do the trick. I just finished listening to the 30 minute MRI Sounds CD on full volume and she slept right through it. Daddy's sanity holding it together while we have been practicing is not going so well. I did it today during her nap so maybe Daddy could get some sleep tonight.

She did wake up once during a nap trial and called me (I was in the living room) I came in and told her they were science noises and laid her back down and she went right to sleep, but she had pulled of the head phones and sat up. At least the sounds didn't freak her out.

The first time she woke up during it we were in the living room and it was playing on the stereo, I took of the head phones laid down with her and we finished listening to the CD she fell back asleep. All good trials.

Tomorrow night we will be at UC Davis Mind Institute doing the official MRI, so I have my finger's crossed that all goes well. We plan on skipping her nap so that she will fall asleep and we can do the scan closer t 8:30 rather then 11:00pm. We have however a full two days. She is also doing the EEG, Mullins, and some other testing and since we are staying over night for the first time, I will be doing a study as well.

Wish us luck.

(PS be thankful it is only a picture and not a video)

The Ride Home, Notes About the Trip, Videos

The ride home from Disney was not nearly as fun as the ride there, I'm not sure if it was the lack of exciting anticipation to start the vacation or the fact that we had to begin with LA traffic but it took us forever to get out of the city and actually on the road. We had to get gas and then Holly had a super messy diaper then when we got over the mountain and pasted six flags and decided to stop for some food. Holly had a lot of energy so we went to a mcDonalds with an indoor playground which was fun but all this was add into to the length of our trip. Later we stopped again because I had to use the bathroom and ran out of my drink at Coalinga and when I opened the car door I felt like I was going to melt and the 1 minute walk inside made me feel like I was cooking. It was much hotter on this day driving home then when we drove to Disney. Later I checked what the temperature was and discovered it had been 105. I think it was around 7:45 when we got home. That said there were lots of fun parts of our road trip too. Holly had new Princess dolls and she really liked them. We all also spent a lot of time singing in the car, and I got lots of time to chit chat with Joel. Holly has recently "learned" to sing herself. it has been really exciting for me. Sometimes her singing is more like shouting, but it is a long group of memorized words in a sing song like voice, and I have several video's of her little songs here.

Happy Birthday
http://www.youtube.com/watch?v=WAKvDeoXm9Y

So we have been learning time based on events, so our trip to "Tinkerbell's Castle" was after mommy's, Sara's, and Chloe's Birthday. Then she wanted to know when Daddy's Birthday was. We told her it was after Tinkerbell's Castle, and Kaylee's Birthday. Next Month. Sometimes though, she doesn't quite yet get how long away those times are. Here she decided to sing Happy Birthday to Daddy.

Rock-a-bye Tinkerbell
http://www.youtube.com/watch?v=jmRLlk6dJKI

Here she is singing Rock-a-bye baby to Tinkerbell. It is one of the songs I sing to her and I have to replace baby with Mommy, or Daddy, or Chloe, or a friend from school. In this version she decided to sing it for Tinkerbell.

Holly Singing in Car
http://www.youtube.com/watch?v=Dyag5cf1_vc

I was trying to catch her singing Doe a Deer as it makes my heart super happy but I only got the tale end and then she begins Rock-a-Bye baby in a tree top. The drive home from Disney to Berkeley is long and she has to entertain herself somehow :-) She actually sang Doe a Deer several times but we didn't have the camera ready

Resists singing
http://www.youtube.com/watch?v=90lir8rVAic

After singing Doe a Deer several times, now that we have the video camera out and ready to refusing to sing it anymore. She is such a little gremlin, so cute in her trouble makingness that you just got to laugh. She know we want her to do something so she will do anything but that. Sigh! Another thing Holly did to entertain herself was grab the camera from Daddy and take pictures. She took about 50 but I spared you by only posting a few shots. Most had her chubby little fingers in them. Many of them were of Mommy and then she had lots of the window as she tried to get pictures of outside. It was cute. She doesn't get that she has to aim the camera and she puts it up to her face, facing herself so there were several pictures of a smooshed nose.

So the last thing I wanted to talk about was the Guest Assistance Pass we used at Disney. This made the trip for us and I could not imagine the very different experience we might have had without it. On the first day we waited in line for Tinkerbell, and Daddy waited in like for Rapunzel, these lines were short compared to later days and the wait in many of the ride lines. Also on the first day it was relatively cool still, overcast and we waited in line in a shady area for those two character meets. That said, Holly was quite a little terror, sitting still was extremely difficult for her, and the heat was super agitating. Also you are not allowed regularly to take stroller's in line with you, and without the stroller it would have been a total nightmare. So the Guest Assistance Pass is for Guests with Special needs. the most obvious would be someone in a wheel chair, but because that is obvious they don't always need our pass. For guests without visible disabilities or issues you can get this pass from Guest Services. In our case I had my doctor write me a note stating her diagnosis of Fragile X, but according to the websites the note is not required, just makes it easier.

They asked me to describe her issues, Attention, Waiting, Sitting Still, Sensory issues, Anxiety with noise and crowds, and heat and light sensitivity were a few. if we had seen any of the shows this would have allowed us preferred seating in the front right before the show would start and access to an exit, but we decided not to risk it this trip. It also allowed us to access rides through the accessible entrance or in some cases the fast pass entrance, and in other cases that access was through the exit of the ride.

In most cases we would go to this entrance and either one other family or no one in front of us. We would be greeted and then have to wait one cycle of the ride, so if they were loading the ride or it was going we would be on the next 1-2 ride revolutions. Typically our wait was 5 at most 10 minutes and we were in a shaded, not crowded area where Holly would not be disruptive. Then we were able to board the ride. In many situations the actual ride wait was hot, cramped and a wait of at least 45 minutes. While this is not designed to "Cut" the lines, I felt like it made our experience doable.

I feel like without this, not only would we have been able to do maybe 25% of what we did, Holly would have been miserable and spent much of her time wanting to go home, I don't think we would have lasted the heat of the second and third day, and our trip would not have been successful. This also allow us to push Holly a little bit and try things. In one occasion I rode a ride first to see what it was like and then decided not to take Holly onto it. Also it would have allowed Joel and I to take turns riding each one waiting with Holly while the other rode, if we actually went on any of the grown up rides together.

Finally Kathy was pregnant, so I think this helped her out a lot with the limiting of the amount of standing we had to do. I highly recommend this pass for anyone who has a child with special needs. Disney itself is overwhelming, scary, and a sensory explosion. Any opportunity to minimize possible negative moments makes the trip all the better. Holly simply does not have the patience of other kids, the tolerance, or the impulse control to handle long lines. Also the pass allowed us to bring the stroller with us where ever we needed to which was nice, she had a safe place to hide when she needed one.