Fragile X Friday: Visit to Mind Institute @ UC Davis with Dr. Hagerman

We went to the UC Davis Mind Institute about a month ago to see Dr. Hagerman and continue our participation in the baby Study. We arrived and started out with the video experiment's first. I am not sure how much of this I have described in the past but briefly, it consists of Holly sitting on my lap and watching some video's. The computer tracks Holly's eye movements and records what she is looking out. There are several video clips, each a few minutes long. All pretty boring compared to the TV Holly is used to watching. Also this visit there was a new team of experimenters. They of course were really nice but I missed the old ones, they had history with Holly, knew her since her first visit at like 6 months old. The video is testing for several things, they explain it every time, but I can;t remember the details now. There is this dural thing that goes from the front to the back of the brain on the top and on the bottom, they are looking at the top one, and it has to do with perception of movement. So in some of the video's there were vibrating lines or boxes at different speeds, sometimes it measured if she even noticed the movement, other times one box would be out of sync with others and it looked to see if she noticed that. They also had a video with faces, upside down and right side up. Another one with sound and images to see if she would look to where the image should be when the sound was played. In between each we found some Yo Gabba Gabba video's from Youtube and she watched them and took lots of breaks. I thought she did terribly, as she needed to eat and snack and she wiggled and got mad and didn't want to stay on my lap and watch. But the experimenter's told me that she did amazingly, even when she was fussing or eating she was watching, and they reported many kids only get through one or two videos and I think she did like five of them, so they were excited.We hardly had time for a break before we had to go and do the Mullins, but I demanded that she get at least ten minutes to run around the playroom, or else I knew she would be too fussy to sit on my lap and participate. She did really well on the Mullins in my opinion, but there was a lot she didn't know. They gave her nesting cups again, and in the time allotted her she completed 3 of the4 which I guess is an improvement, though not a reflection of what I feel she can do. they did a very interesting thing where she put this large plastic coin into the top slot of a piggy bank, when they handed her the coin where it was upright vertical and the pig was in the same direction she got it in every time. But when they turned the pig so the slot was horizontal she did not figure out to turn the coin to get it in. She kept trying to push it in, but never turned the coin. I thought this was very interesting and it wasn't a skill I had ever though of, but then I remembered that she has this set of three books that go into a book holder and she likes taking them in and out, when it is aligned correctly it is a fine motor skill challenge to get it in, but when it is turned she wasn't able to do it, so I had observed this without realizing it. So now I knew it was something I needed to work with her on, which was a revelation.The other thing was they showed her some books with two or three pictures and then would ask her, where is the "Cat" or "Car" in many cases they simply were not words or items she had been exposed to or would know or has been taught so she had no clue, but it was also not an activity we had every really done, me asking her where is the "blank" she she got all of these wrong, besides the fact that she wanted to grab the book, play with it, and turn the pages. Another one was matching, which we kind of sort of had worked on, and at least I sort of taught her the word same. So the tester would put down a key and a car and then show her another key and ask her to point at the same or give her the same. She did about 50/50 on this I think, the problem is, both were out of reach and she wanted to explore and look at them both, so she would reach for both when they were pushed into reach, not listening to the request for same, but instead her own desire to look at the items. had the experimenter given her both items to hold and look at first, then shown her a match and asked, give me same I think she would have been able to do it. but in this scenario she didn't have the impulse control to not grab both. There were many other things she did, coloring, where they wanted her to copy drawing a strait line across the paper, but I was proud she even marked the paper at all. A few looking at her grasp, picking up small items taking things in and out of containers looking for hidden objects, but the ones described above where she struggled were the ones I remembered most.

After this we had another very short break, maybe less then 5 minutes before seeing Dr. Hagerman. Holly was very tired at this point. She was fussy and cranky. when we were last there she wasn't walking independently, so to see her running Dr. Hagerman was excited and impressed. She did a physical exam, chatted with us, observed Holly, and reviewed the early scoring of the Mullins.This is an excerpt from her report: "She participated in our Baby Study and had a follow-up Mullen. On the Mullen, she scored 18 months for her chronological age. She scored 20 months in visual reception, which is in the 73rd percentile. Her fine motor score is 16 months, which is at the 14th percentile. Her receptive language score is 11 months, which is at the first percentile. Her expressive language score is 8 months, which is also at the first percentile. This gives her an overall early learning composite score of 73"

When we were talking everything she said didn't sink in right away, some of it did while we talked further, some not until later after reading the report. When she said Holly was in the 1st percentile for language I didn't understand what she meant. All of my life I had been measured int he 99th percentile, top 5% so she had to repeat this three or four times before it sunk int hat she was at the complete opposite spectrum 1st percentile in language, meaning 99% of children her age are more advance, and what shocked me most about this, was at the time I was in fear of loosing speech therapy service. here a specialist is telling me she is concerned about her language acquisition and that she should be seeing a speech therapist 2-3 times a week, and I am fighting with the regional center to keep get her speech at all, and then to keep it, because her delays may not be significant enough, how these two things can both be possible in the same system appalls me when I think about the lack of services out there for children, and budget cuts, and getting the things she needs. the other thing that didn't sink in was that they called her borderline, as in intelligence, as in her composite score of "73" not realizing this was an early equivalent to an IQ test, and of course how could she score anything higher when she can't speak or communicate yet, but again that number or the fact that they were equating this to IQ took a little bit to hit me.
I am not saying that I am living in complete denial, but I have been working on the theory that she has the capacity to be main streamed in a regular classroom, and will graduate high school and all that Jazz. I am not saying I suddenly don;t think that anymore, I still do, but I am coming from a perspective of having an IQ of something like 137, and Joel's is even higher then mine. When I was pregnant, I realized that it was completely possible her IQ would only be between 100-80 is we were very lucky and she was in the top 10% of fragile X girls, but since having her, all her accomplishments really had me thinking she was right up there on the higher end, but then I guess compared to the language development of her friends, 3 months younger, she is much further behind. I also realize though, that this is hardly any indication to what her "scores" might look like at 3 or 5 or 10 for that matter. But it was also a bit of a shocker, wrapping my brain around a number. When I heard numbers like 12-14 month level, knowing she was 18 months, I was thinking well that's not even 33% that doesn't even qualify her for services, that's only a few months behind, but then hearing it in this different format sort of struck me differently. On a positive note, another thing that didn't sink in until I read the report, was that Dr. Hagerman was super excited that her visual processing scores were int he 73rd percentile, she was ecstatic and said that is rare in fragile X kids. I was thinking, hmmm... 73rd isn't so great, obviously better the 1st, but she sure is excited. When I read the report that that meant she was in the 20 month range, I realized that 50% is average, and 18 month range, so being above 50% meant she was actually advance compared to neurotypical kids in this one area. This was great news. While in the office, as I said earlier Holly was fussy, so I had pulled out my iPhone and we were looking at her flash cards and ABC Animal App, and Dr. Hagerman was amazed with these and said that we should do these with her several times a day and get video;s for her and that with such high visual perception scores she will be able to learn much faster in this way. Just tonight we put on Baby Einstein's My First Signs, which she hasn't watched for a while and we noticed her sitting there trying to copy the signs and repeat them, she was babbling in sign language. She couldn't quite get her hands to articulate the sign, but she would clearly be sitting still watching, then see the child on the scree make the sign, then try to do it herself, she would move her arms or hands in the same motion to replicate it, but didn't get her fingers in the right places. We were amazed. So this was a good thing.

The other major thing we discussed was her anxiety. Things that I described or even observed in the office as being fussy, Dr. Hagerman interpreted as her having anxiety. Exposure to animals, participating int he exam itself, issue with her personal space. Difficulties falling asleep, easily frustrated, even some lack of attention and focus. Dr. Hagerman explained that it was very common in Fragile X kids to have uneven levels of Serotonin production, and this not only deals with things like Anxiety but also language development. She indicated that there have been some studies done that upon starting a course of Sertraline (Zoloft) there is a language explosion. The notion is that if the serotonin levels are properly regulated, then when the back part of the brain is trying to communicate with the front part, traveling along these serotonin pathways there won;t be as much of a delay. A practical example of this is when we sing the Open Shut them song, Holly responds a verse after it is sung, so I will sing about putting out hand in our lap, but she doesn't respond with the action until I have almost completed the next verse about clapping, so she is off, because her processing time is so slow to think about what she want to do and then tell her brain and then for her brain to tell her hands, all of this supposedly can be helped with Serotonin. Also the thought is that if she had decreased anxiety then she won't get frustrated so easily and she will stick to a task and master it and learn. So we decided to give this a try.
Another excerpt from the report on dosage: " This would be the liquid sertraline which is 20mg/cc. I am recommending 2.5mg or 1/8cc by mouth each morning. If we do not see a result with 2.5mg, we may later increase this to 5mg each morning. The dose can be cut in half if she becomes hyperaroused or more hyperactive on the medicine. " So the amount we are giving her is really small, and it needs to be mixed with certain kinds of juice or lemon aid, so I have a 1/2 ounce medicine bottle that I am using. At first the medication said to mix it with 4 ounces of liquid, I thought that was insane, but read in someone else's blog on how they had to do that and thought it must be true, and wondered how on earth will I ever get her to drink 4 ounces of juice or lemonade. But after 2 days I called the pharmacist to ask if I could instead add it to formula, which i know she will drink 4 ounces of. he said no, there is a reaction with dairy, but that I didn't need to give it to her in 4 ounces because her dosage was so small the 1/2 ounce was fine. So every morning she has been taking it. She has not had any adverse reactions, and in short I will give you a summary of our observations so far.

So the other thing we started Holly on was Melatonin to help her sleep at night. this is a naturally occurring hormone that it is possible her brain isn't making enough of, so it isn't triggering the message to sleep when it is night time. This is over the counter and she is taking it in small doses, about 1/4 the adult dose. Sleep issues are very common with Fragile X kids, and I am happy tp report it has worked amazingly, during the first week it went from 2 hours to get her to fall asleep to 20-45 minutes. Since then we have implemented a new bed time routine where Joel puts her to sleep and stays asleep with her. he then wakes up early at 6:00 AM to work on projects. I think this has helped relieve stress and pressure on me, but also she knows daddy isn't trying to "leave" as soon as she falls asleep, he makes the room boring, and she doesn't fight it. Joel thinks she was fighting to stay awake to hear me sing and basically manipulating me, while I thought it was soothing her, in a way it was, she wasn't squirmy, but she was also staying awake to listen. So this new system has been amazing.

After we rapped up with Dr. Hagerman we met with Vivien and we completed the Vineland assessment, which is basically our own report of her developmental status, and then it was time to go home. I am going to conclude this post, and start a new one with our observations of Holly after being on Sertraline for 1 month.

UPDATE - Related Links:

http://mindbrain.ucdavis.edu/people/srivera

http://mindbrain.ucdavis.edu/labs/Rivera/research-areas/fragile-x/fragile-x

http://hollyzzdavis.blogspot.com/2009/11/fragile-x-friday-part-2-observations-of.html

Puppet Show

A few weeks ago Isabel told me about a Puppet Show happening at the Richmond Point Library. We are normally busy with therapy in the morning, and it's early, but we happen to be free on this particular day, so we headed over to check it out.This was the "count down" Puppet, The Library opened up right at 10:30 and Holly ran right in, and then this little guy would pop up at say "Puppet Show, ten Minutes till the Puppet Show" Then again every 1-2 minutes later.I was surprised that Holly did pull every book off of the shelves, but she was distracted by the other kids coming into the library and the Puppets that appeared every few minutes. She was also very distracted by the cart with the puppet show supplies.She actually paid attention for a few minutes too, I was shocked. She did in fact get scared twice, but it was very brief, more of a surprise, once when a puppet appeared out of nowhere and another time when it disappeared. I think it was more confusion with Object Permanence, not knowing where the things were going.But for the most part she was interested in the Puppets. She is somewhat familiar with them, we have a few at home that we play with, and she sees them on various Baby Einstein Video's. though I am not completely sure she can translate what she has seen on TV to real life.The times she was scared, I just had to go over and get her and give her a hug and she was calm again. This section of the Puppet Show was all about a special little puppy that could do tricks. The Clown people told little jokes that the four year olds loved, and made the parents have a little chuckle.The came the interactive part. This little boy was a volunteer, Holly had to run up to him and check out what he was doing. He was standing in her spot. It was very cute. the Puppet master came out from behind the curtain and said we were about to see a puppet show like none other.He advised the little boy to say "I am the Sun! The Sun the sun, the sun! HahAhha." It was so very cute to here him say it. The puppet master used this gruff voice, and the little boy imitated it with his fake little grown up voice. So cute.He would point, and he would raise the sun and say his lines. The audience loved it. There were several other volunteers too. Some who sat in the audience and had lines at certain times. others were also asked to come up to the front and use various props. Prior to this, Holly was running around all over the library checking in with me on occasion.But once they started this section, Holly was very attentive and wanted to know what people were doing and was listening to what they were saying. Here she is with another little boy waiting to see what was next.Two of the parents were asked to come up and hold the "Ocean" and there were also a few little kids who were holding fish that lived behind the Ocean. Based on what part of the story we were on, the water would rise and fall and the fish would swim or appear on the surface.Once we were ready to start the Puppet Master told a story about Ecology and how the water in the ocean evaporates when the sun comes out, but then later it gets cloudy and raise and the water rises back up again. It was a cute little story with lots of parts for people to help with. The kids ate it up.After a while we went back to a regular puppet show, but the Puppet Master wanted to show the kids how they could use every day objects as puppets to tell stories. This was the story of the 3 Billy Goats Gruff.He used three books to form the bridge and then three different size purses to act as the Billy goats, first a change purse then a large wallet and finally a regular bag. It was really cute to see each "goat" trick the troll into letting them over the bridge.Finally there was another little doggie, pet to the Clown, who had special skills, like that of making his own airplanes. It was really neat. it was at this point of the show that the little girl sitting next to us stood up, pointed at the puppet and said "Doggie, Doggie goes woof woof!" I talked about this in my previous post about services, and how shocked I was that the girl was only 14 months old.This was pretty much the end of the puppet show. But the kids stayed and lingered around for a really long time. Sarah was being well behaved and sitting in the back watching the show. holly and I were near the front so she wasn't in the crowd and it was easy for me to get up and chase after her.So once the show was over Holly found Sarah and Climbed up into the chair to sit by her and the girls had a little snack. It was so cute seeing her sit like a big girl, and I think she was pretty proud of herself too.

Here is Sarah having a Puff. The girls eat a lot of snacks together and share there food it is really cute. Holly sat in the chair for a really long time, I was amazed that she was balancing so well. Here she is even asking for "more" snack.Here Sarah snapped a puff right out of my hand that I was holding up for holly. Holly got a little irritated, but not for long, as I quickly gave her another and she was fine again.We let the girls play for a while at the library, but Sarah was getting tired, it was time for her morning nap, and she was ready to go. Sarah has been "weened" from her bottle, but sometimes I wonder if a sippy cup is really so different. Isabel is holding it for her and she is sucking away, it seems very close to the way Holly guzzles down her bottle.We are sometimes thinking of weening her though, we of course still give her one before nap and bed time, but on some days other then the morning wake up bottle that's all she gets, but on others, when we are out and about she really wants one in the afternoon too. Anyway, that was our morning at the puppet show. Lots of fun.

A Little of This, A Little of That

Not too much to report on, this has been a bit of a low key week. I think it is because I am still batteling this allergy thing, it acts like a sucky cough and I am congested and can't breath half the time, but it's not Ashma and its not a cold, it is just compacted sinus from the weather changes, so there isn't much I can do. Today my glads were swollen and hurt, I can't sleep because when I lay down I have a coughing fit which wakes Holly and is well pretty uncomfortable, so transitioning from awake to asleep and vice versa is a killer. Whine whine whine.... blah I know....

My little bubble butt has been a pain when it comes too sleeping too. Isn't she cute sticking her bum in the air like that its her favorite way to sleep, well and then some of the time she has her blanket over her head too. She likes to wedge her self into the corner pressing up against the crib. But she has been fighting her naps and not wanting to go to bed, the other day she had a night terror again, this one was really bad. That day she had only taken two thirty minute naps, but I wasn;t expecting it because it was too naps and she just woke up early from them and wasn;t cranky and fell asleep right away, but minutes after we transfered her into the crib she woke screaming.

This one was so bad she threw up several times. I was standing in her room Joel had just handed her to me in hopes that maybe I could sooth her, but her eyes were still closed so I realized it was a night terror and then up came the vomit and all I could think was the excorsit. It was horrifying and I was covered in it. I had to undress both of us all the while she was screaming and then I changed her and cleaned everything up, and I took her into bed and just held her tight. All the while her eyes were still closed and she was still screaming like a banshee. After a few more minutes she would settle whimper and then scream.. this went on for another several minutes, I don't remember if I gave her another bottle at this point, I may have and then she threw up again, this time wasn't very bad, more like a spit up from a cough, but this time it it seemed to wake her up a little bit. So she started to look around. We took her at this point into the living room and put on baby Einstien. She was still crying quiet a bit and it didn't help much but then we went to lay down again and this time she was gulping and whimpering but eventually settled. the whole ordeal was maybe 30-40 minutes, but Joel said it felt like forever. I think the scary part is that she isn't reachable when she is in that state, Joel tries to wake her and engage her and talk to her, I have read that that makes it worse, and you become part of the nightmare, so i like to be in the dark dark and just hold her tight and be there and she eventually calms, but it is incredibly humbling to be so out of control and unable to do anything to help. Its pretty sad that she has been having these night terrors so young, they say they don;t start until closer to two years old, but she has had a hand full now, and I know thats what it is.

Today she refused to go down for her mornign nap until almost 11:40 and luckily Sally her PT was able to come back at 1:45 instead of 12:30 letting her sleep for an extra hour, but then at 5:00 even though she was yawning I tried to put her down for a nap and she refused and got pretty cranky about it, so we got up to play and then Joel tried to put her to bed around 9:00 because she was tired and had been awake for seven hours, but she was having none of it, so I calmed her down and waited and then we tried again at 10:15, we had Karma and Saneesh over and we planned on watching lost, but she refused to let Joel put her down, as soon as I left the room she would scream, I would sing or hum or hold her and she would be calm, then if I tried to leave she would yell, so finally joel told them to leave and that I had to put her to bed. While I was laying down with her she stayed calm, but it took about 30 minutes for her to fall asleep and it was almost 11:00.


Doesn't she look like such a big girl in these pictures, I am remembering back to when I first made these pillows and she used them to pull up on and now she is big enough to sit on them like a chair, it is amazing. Every time we turn around she is taking something off of the table that we didn;t think she could reach so she is getting taller by the minute. She isn't really using her sippy cup well, but she is getting more practice with it daily, we fill it with juice and she likes to shake it and walk around with it she takes a couple of sips here and there, but she isn;t really drinking a lot. But its a start and I am Happy with the progress.

Sally was thrilled with Holly's walking today. She says she is very controlled and she was impressed with her turning and piviting and even her falling is slow and controlled. She is navigating obsticles like pillows or toys on the floor, and taking mini steps up or down over door stops or on and off the carpet. She is even squating down picking up a toy and then walking while holding onto it. She has the skills to stand on her own rather then pull up but hasn't figured that out yet, so it is one of the things we worked on today with Sally. She showed her a few times how to do it. Our session went pretty well.

On Monday we missed our playdate at Chloe's because Holly refused to sleep in the morning, and went down at 2:30, since the playdate starts at 3:00 and she slept till 5:00 we didn't go. I have een pretty busy all week and since falling alseep hasn't been easy I haven't been napping with Holly when she naps, as a result of that I have been pretty tired myself. I guess the apple doesn;t fall far fromt he tree, with a mommy who has sleeping issues, of course she will too. It is sorta scary the things that you see in your kids that simply can't be learned, and present themselves at such a young age.

Yesterday we went to the Eye Doctor, he was wonderful.. he was a pediatric opthamologist and said that holly's eyes were healthy. There were two conditions that are common for kids with Fragile X that dr. hagerman wanted us to check up on, and she was fine, but he said we should come back in a year for another visit, to do a yearly check-up until about 4. At that age, she should be able to do a regular vision test and if her eyes are still healthy then she gets turned over to the pediatrician for checkups during well visits, until she has issues with the vision tests. Which we of course hope won't happen.

We found ourselves rushing out of the house becasue again she went down for her nap late and I wanted to give her every possible moment of sleep before waking her to transfer into the car, and the ride there was about 30 minutes, afterwards she got very cranky and did not want to be in the car seat so we headed over to Sadie Dey's and I let her play for the rest of the afternoon. She didn't go down for another nap till almost 7:00 and slept till 8:00 so of course she was up till midnight that ngiht too... man I should stop whining about sleep issues, can you see this is a theme.. I should call this the gripe and moan post.

I have just had a lot to do, I had a WASC conference call this week, today in fact, which went swimmingly, but I had to rush to review and analyze three reports over the weekend, and I was the lead reader so I was in charge of the call, which was a little stressful of course until the call started. But also I am dealing with an issue related to the title company, apparently someone things there is a judgement against my house from the previous owener that the title insurance didn;t catch, of course this is from 2004 when I bough the house, and the original Judgement was 2000. So it is a pain in my butt that I have to dig out my title insurance for my storage files of 5 years ago, and then find the office and go down there and deal with this, because of bad debt that the previous owner had, I mean why doesn;t the lawyer go chase him down and find him rather then relying on me a responcible person to clean up his mess. Well tomorrow we are having a playdate over here, so I will try and remember to take a bunch of pictures and have a happy post posted soon!

Life is good, I am just in a whiney mood. We are both feeling worn out, but we are hanging in there.

Random Thoughts Tuesday

Holly's birthday party was amazing, and I will post about it as soon as I have a spare minute.

I hate Day light savings time it has totally screwed up our schedule. Holly has been going to sleep at 11:15 (right when she should if the clocks hadn't changed) and last night it was midnight. She isn't waking up early enough to get her naps and her lack of sleep has made her very cranky.

The poor baby has a horrible diaper rash that I think turned into a yeast infection, but I got Destin today and it seems better, but is still slightly raised. We were using Boudreaux but everyone told me it wasn't as good as Destin.. Destin is 40% zinc oxide versus 16% in Boudreaux.

I miss my mom, she went back to Florida already and her trip was too short. I was stressed all last week planning and preparing for the party, so I was cranky, now that I am more relaxed and its all over, she had to go.

Monday we had our positive parenting workshop and they talked about all the age appropriate behaviors kids do that adults don;t like, like throwing toys and blocks, biting, ripping pages from books. And how they must do these things to learn about the world around them.

At studio grow Holly was dumping blocks out of a bin and I didn't respond, and she kept gleefully throwing them out. Then she put on back in by accident and I clapped and applauded her. She was so excited, that she put several more back in the bin, to get my cheery response.

Grandparents are great, but I think Grand babies wear them out... They aren't used to hours and hours of doing what Baby wants and following them around.. but that's why they were parents 30 years ago, and grandparents now.

Holly likes all the extra attention but I think by the end of the day she is worn out and just misses momma.

Grannies are wonderful for taking Holly on walks around the park, she loves walks.

Holly has been waking up in the middle of the night, one night it took 2 hours to get her back to sleep, after her bottle she laid in bed with me, and just stared at the ceiling, for 90 minutes, I rubbed her back and head and leg and face, if I stopped she got upset, but as long as I gently rubbed her she laid quietly.

She is either getting her molars, unhappy about her diaper rash, going through a growth spurt, processing from her over whelming days, or all of the above.

Mom and dad get to go to the movies tonight, this is very exciting.

Mom feels like she is very behind on posting, and never got around to writing about our great Wine and Cheese Play date, or Chloe's last week.

Mom needs to find time to write all about Holly's birthday Party before it is too late. She promises herself she will do it tonight, once Holly is in bed.

Therapy was a wash today because Holly was so tired, she didn't get up at 8:00, so she wouldn't go down for her nap, then by the time therapy was over she was over tired and wouldn't sleep. She finally fell asleep at 4:50.. after being up since 9:00 AM, and in the first 45 minutes of her nap, she woke 3 times crying and needed to be soother back to sleep. At 2:00 she fell asleep for 10minutes then woke up screaming with night terrors during the day, but Mom woke her up and let her watch baby Einstein till she was calm, then tried the swing, but even after 45 minutes she still wasn't asleep, and then got grumpy and wanted to play some more.

Holly is a baby on the verge.... words and steps are days away, I can feel it. She so wants to talk and walk, she just isn't quite there yet, but she is working at it.

Doctors and More

So on Wednesday after our session with Sally we decided to get Holly’s X-rays done. I wanted to have them to bring to Dr. Hagerman’s office, but I hadn’t been able to go earlier because there was an issue with the Insurance Authorization. When I arrived it was a nightmare, we spend over 30 minutes in the parking lot looking for a spot, at one point I left the lot and came back in, because the first 20 minutes are free and I wanted to reset my time. I was worried we wouldn’t make it because Radiology closed at 4:00 to walk in patients. At first we had to go to registration which was different then when we had the ultrasound done. We spend a lot of time in the waiting room there. And when we finally went to registration there was an issue with the insurance because they had two Holly’s listed in our plan, one male, one female, and with the birthday of 01/02/2002. I was able to get it all worked out and they sent us up to Diagnostic Imaging.

When I got there we hit Hurdle number two. Hey didn’t have the referral from Holly’s pediatrician on file. How something like this happens I am not sure, since it was faxed twice, the first time over 6 weeks ago, and then the second time the previous Friday. Thankfully they were able to call her and she faxed it yet a third time. This of course meant more time in the waiting room, but since we were in the queue it was ok that 4:00 PM came and went. Holly was very active and didn’t want to stay in her stroller. Since she would have to stay still for the X-Ray I decided to let her run around the waiting room. Since it was a children’s hospital, it was pretty kid friendly. There was a book case with children’s stories that she preceded to remove one by one, and a large fish tank. She cruised back and forth along several rows of chairs, and when other kids came in to wait she crawled over to say hi.

After a while she got bored with the waiting room and headed out to the hall and tried to escape. The staff thought she was adorable and quite amusing, so I let her wander off down the hall for a while, until she got into something precarious, like trying to sit in front of a door or something and then I would bring her back to the waiting room and reset. There was this one little boy who was a few months younger then Holly but he was like 4 inches taller, huge in comparison, and he was very friendly, in fact he followed her around, he wanted to touch her face and pet her hair, and now I am remembering this is actually where she got her hair pulled. His mom was horrified, but I told her it was ok, and that Holly is normally the one scratching faces and pulling hair, so I know how she feels, and she is tough, and can take it. I picked her up and comforted her and then she was ready to play again, with the little boy even.

Finally they called us back, and I changed Holly’s Diaper so she would be more comfortable and the technician got everything ready. Originally I was told that I would wear a vest and could stand next to her but he would not let me. So I had to stand about 10 feet away behind a screen where the other technician was. It was in the same room, and very close by. So the X-Ray consisted of 4-5 shots. She simply had to lie down on the table and all was well. It was a little cold and since the films were under her she couldn’t lie on a blanket and had to have her top off. She was fine for the first two shots, but then she got a little wiggly and tried to pull her legs up, he pulled them back down, but then she tried to hold her ears, and he had to hold her arms down, so then she tried to do crunches and sit up, and he had to hold her forehead down. All this restraint made her very mad. The forth one had to be on her side and she couldn’t curl up so by that time she was crying. But this all took less than 2-5 minutes and I was quickly able to go to her and pick her up and as soon as she was able to sit up she stopped crying and was fine.

It was funny, I am sure the technician has done this 1000 times but between each shot he had to change the films and was not holding her and the table is rather narrow, so my worst fear was that she would flip over and fall right off. More than a few times I jumped forward to run to her aid as she began to wiggle when he wasn’t holding on to her, but then he would put his hand on her and she would settle and not actually turn and was fine. So once we were done there was a third waiting room we had to sit in while we waited to make sure the pictures came out good. They did not, and he had to do the last shot again. This time they decided to do it differently, in a way where Holly was to lay her head in a foam brace type thing and sit raised on a board. As soon as we went back into the room she got upset, realizing that I would be putting her down again. But it went quick. I held her while they set it up, and laid her down into the foam and though she didn’t like it, it only took about 60 seconds and we were done.


They noticed and made me take off Holly's Earrings during the second set of XRays. I have never done thins before, and actually needed to have the guy help me. I held Holly's head and had him take them off, I didn't have a strong enough grip or pull to get them to open. I stuck them in my pocket and when we got home cleaned her ears and the earring with the piercing solution and put them back in while she was taking her nap.

I was able to get a copy of the X-rays on a CD which is cool. It comes with this special X-ray viewer, and the pictures are not in a normal format. So when we got home I was able to look at them, not that I knew what I was looking for. One really cool thing was that we could see holly’s Molars, and boy it sure looks like they are ready t o start coming in. We really couldn’t tell what else we were looking at, but on Thursday our Pediatrician met us at UC Davis so she could meet Dr. Hagerman, and she said she spoke with the Radiologist, or X-ray Person, and they told her it all looked great, and Holly had no issues in her Neck, shoulder’s or spine. SO anything going on is definitely a tone issue and not related to any possible skeletal problems. I am looking forward to sharing the X-rays with Sally, I am sure she will find them interesting, and maybe even helpful.

UC Davis was a long day. We got up around 8:00 so we could leave around 9:00 to be there by 11:00. Thankfully Holly slept most of the way up there in the car, but that meant she was awake by 11:00 and would be ready for her afternoon nap sooner than usual. Dr. Hagerman was running late so it was almost 11:30 before we got in to see her. I didn’t mind much though because there were a lot of fun toys in the waiting room for Holly to play with and it was Dr. Jones first time really getting an opportunity to engage with her in a playful setting, and watch her go. She was amazed with her cruising and crawling and fine motor skills, and said that if we didn’t have a Diagnosis at birth she would have missed it, and not known Holly had a genetic condition, or noticed any significant delays that were cause for Alarm. But we talked about how it is so hard to know what Holly might have been like in that situation, because I truly believe she is doing as well as she is because of the early intervention services she is receiving, and I credit her therapist for her amazing progress. Well also her problem solving attitude, and determination.

Once we did get in to see Dr. Hagerman we met a Colleague of hers from the Fragile X Center in Chicago Affiliated with Rush University, and a Colleague from Korea. There was a 4th person Observing but I forget exactly where he was from, we met him last time we were there so he is doing an extended visit, unlike the Woman from Rush, who was just there for the Day. We talked about Holly’s Development and there were a few things I had questions about. I think I am being a paranoid, hypochondriac, over protective mother, but I somehow got it in my head that she might have a Mitral Heart Valve problem, which is somewhat common in Fragile X. I came to this fear because the Internet has too much information, and I was looking up sweating while sleeping in babies, trying to see if Holly’s profuse sweating was related to anything, or maybe had something to do with Self Regulation, and her fighting sleep. I found that sweating in your sleep could be a sign of a heart problem. I knew there were issues with Fragile X and the Mitral Valve so I looked it up, intending to rule it out. Then I read that it can cause breathing issue and rapid heart rates. Well just recently Holly has been gasping for air, catching her breath, when she is active. It is a little off putting, and while it is some days rare for her to do it at all other days she will gasp several times making her circuit across the room. I had chocked it up to having a stuffy nose and mouth breathing, and was keeping an eye on it. But once I read about breathing related to the Mitral Valve I worried.

Well, Dr. Hagerman, and Jones were very sympathetic and patient with me and both carefully listened to Holly’s heart and said that if there were any issues they would be able to hear it, and then follow up with an EKG, but this typically didn’t develop until someone was much older, and that her heart has always sounded amazingly strong. They reassured me her heart rate was normal, and I listened, and it seemed fast to me, but they said that is normal for a baby. Then later she did the gasping thing, and I jumped, “See, did you hear that?” and they had. They checked her out, but said that it was a common language development thing. She is playing with her breaths, learning how it works, and it isn’t very different then doing something like Raspberries. Her lung and breathing sounded fine otherwise and that I had nothing to worry about. I now know I was completely over reacting, but they said no, it is good to bring up concerns like that, because you never know when it could be something serious, and they were happy I was so observant and attentive, but that in this case she was actually fine.

We also discussed the Folic Acid therapy and I explained how I had not started it because of the way the pharmacy gave me vials for an IV with Syringes. She said that was crazy and that her Pharmacy made up a solution, and they could give me a 3 month supply and it was only like 20$ without even using insurance. So she wrote me a new prescription. She said if there was a compounding pharmacy locally, they could call her pharmacy for the formula when I needed the refill, but I should give it to Holly for at least 3 months. The solution is actually only good for 100 days, and needs to be kept away from light, so we plan on starting it today.


While we were there we let Holly crawl and cruise around the room, it is hard t contain her in one place especially in top of a table and while she was pulling up on the table leg, once up she let go and sat her self down. Joel said she stood for a few seconds. He pat me in the arm and asked if I had seen it, or if anyone had. I missed it, but the Specialist from Rush nodded her head, she had been impressed and saw it too.

We also discussed Holly’s Speech Therapy issues, and the value of having early speech therapy. She says her therapists start working with babies at 6 months old, and that in her report she will recommend that Holly receive Speech therapy two times a week. I am hoping her report goes a long way to get the regional center to approve services immediately. That said, she thought we were doing an amazing job working with her, and although she isn’t make as many sounds as she could be she was very vocal and seems to want to communicate which is half the battle. She looked in her ears and said they look fine but recommended we see an audiologist to test her hearings and do a more thorough exam to make sure there is no fluid, because ears problems are so prevalent with Fragile X kids, we want to be proactive about it. I had wanted to do this anyways, so Dr. Jones said she would do the referral in two weeks when we come in for our 1 year visit. Also she recommended doing an eye exam before she is 2. She is not currently on our vision insurance, so I need to find out if the regular insurance covers the exam, and just not the cost of glasses, which I am sure she won’t need, at least not now.

This was basically the Visit with Dr. Hagerman. It ran long, and our next appointment was at 1:00, so we only had 15 minutes for lunch, but Vivien the coordinator found us and told us we could take until 1:30, so we were happy to get the break. I was a little worried about Holly because she had been up since 10:45 and was starting to seem a little bit sleepy. We went down stairs after lunch and started the eye tracking experiments. We got through 3 videos before Holly was fussy and didn’t want to sit still anymore. We had actually brought our sandwiches downstairs so Holly could play a little before I was going to make her sit still, but she was ready to wiggle some more. So we changed her and let her play for a while and made her a bottle.

She basically whined through the next three videos but did make it through them. We took a break after number 4, because though she watched and paid attention she wined the whole time. So we took another break and worked on the Mullins. Before I describe that, I have something interesting to note. I thought Holly would do really good during the video’s because we watch a lot of Baby Einstein, but what I realized is that she likes to crawl all over me, and often watches over my shoulder, wiggling in my lap, sideways, ect. And for the testing she had to sit still in my lap and not flip, flop and wiggle. She didn’t much like that. But I never realized how much she did move around during out “quiet” time in comparison to being in a situation where she had to stay stilish (at least keep her eyes in the same place so they could be tracked.

When we did the Mullins test they had Holly sit on my lap so she would be at the table, and be able to do tasks at table height. We did stuff like showing holly a toy and covering it to see if she would look for it. She then had two covers and put the toy under on and not the other to see if she knew where it was. We tried a simple puzzle. She knew she was supposed to somehow put the piece “in” the puzzle and tried several times in several ways banging it on the puzzle to get it in, but didn’t. We also tried some nesting blocks, but in the way it was presented she didn’t do it. It is interesting because the Mullins is very specific, and you have to show three nesting items take them apart, put them in, take them apart and then Say, Holly you do? Or something to that affect. Then you can’t really help, point, or prompt her. What we do at home, is I point to the container and say, can you put it in, and then she will. But presented in a different way, and simply watching her do it and then be expected to do it herself, she wasn’t that interested and would rather chew the cup. In a similar way we did a matching test where there was a key and a triangle and then holly had the key, and she would say something like, show me which one is the same, Holly same? But she isn’t really that advanced yet either. I think we did some stacking which she isn’t doing, and then putting in and out. I think she passed that one. She had to take every item out of the container and then put every item back in. But about half way through putting them back in, she wanted to start taking them out again, so I don’t know how you score that. Then there were some gross motor skills which she is doing, except the independent walking, and they asked us about a few other things based on our observations.

All in all it went rather quickly, but she had a lot of fun sitting table height and doing the activities, so we are going to try that with her using the hanging on table chair, and try and teach her a few tricks.

After we went back and got through the last two videos, but Holly was very tired, since she had been up since 10:45 she was going on 5 hours, and she was doing very tiring tasks. We had to do a blood draw, because she still needs a final third test done, but they poked her twice and didn’t get a vein, so we said enough, let’s try it next time, and no blood was taken, but she sure wasn’t happy about it. They Had Baby Mozart, and put that on for her, and the prick hurt, I think if at that point they had found a vein and let the blood flow she would have just been whimpering, but they were looking for the vein, poking the needle around and pressing down trying to find it, so she was crying most of the time, but the whole thing was less than 10 minutes including breaks.

Afterwards we drove home. Holly slept in the car on the way back and that is pretty much our trip. They want us to come back in 6 months, and I will be scheduling that with Vivien.

Busy Week

This has been a very busy week for us. On Monday I attended a Positive Parenting workshop at http://www.bananasinc.org/ Banana’s, which is a great organization, BTW if you are local. It is a 6 week session, no babies. The first night Joel stayed home with Holly, as I originally thought she could come but found out last minute there is onsite childcare but it was “full” when I arrived there was plenty of room for her, but it was too late by then, so next week Joel will be attending with me, and we will see how Holly handles being away from Mom and dad for about 90 minutes, playing in the next room. The class is lead by an MFT and there are about 15-20 parents. We basically talk about parenting in a positive way, like rather than saying No all the time, say hands in lap, or redirecting. It is a very interactive workshop and the group has kids from 7 weeks to 8 years old and each has different issues they bring to the table to talk about. I look forward to future sessions.

One of the reasons I am also looking forward to this, is from what I have heard about the Spirited Child Series. The other mom’s like to call Holly Busy, and Active, but I can tell already her temperament is “spirited” so I am hoping to learn many discipline strategies now before I need them, so I can set them in place and well be proactive, because I’m like that. But I fear it may be too late in some cases already. I guess that’s why they say the first baby is your practice child.

On Tuesday I had a WASC Review which was sorta fun, as usual I enjoy doing the academic and educational stuff, just to keep me on my toes. This week I also got around to doing my taxes which was crazy, as I thought I was prepared, and I thought I scheduled the appointment at a time when Holly would be napping, but things didn’t work out how I planned. First I didn’t realize I needed her SSN, and I didn’t have it memorized, well I had, but wasn’t sure, and I thought my mom had it but she couldn’t find it, so I had to call Joel to go home and get it. Which was lucky because I found out you could deduct the cost of daycare, but I needed the tax ID number, and a few other items. In the end I got it done and filed so I was excited. But Holly was not asleep, so speaking of a “spirited” child. What was supposed to take me about 30-45 minutes actually ended up being 90 and Holly cruised and crawled and explored all over the H&R Block office. My tax Guy joked to a colleague that he was a babysitter tonight, as several times he had to hold Holly as I searched for some paper work or called Joel for information, and even more times than that he had to help pick up the many toys she threw off the desk onto the floor, or the other stuff she decided to drop. The other clients were also very amused and she wandered over to say Hi and explore the office. It certainly was a preview of what is to come, once she can actually walk, I swear I will need a leash.

We have made good progress on the eating front, or at least I have been. Joel has been able to feed Holly Yogurt in the morning, at least a half container usually, but he has not had any luck with other feedings. I on the other hand have gotten her to eat entire jars. Just this week at one feeding Joel gave up after about 5 bites of Pear/Blueberry and 20 minutes later I tried and Holly ate ½ container of Pear/Blueberry, finishing it, and then an entire container of Spinach Potatoes. Joel was in shock. I read an article the other day, which reassured me I was on track. It mentioned a few strategies I have been using, and they seem to be working. One is letting her hold her own spoon. I had started that months ago, but it was nice to see it in print. The next is to distract her with finger foods. While she is busy picking up and trying to eat them, you can slip in bites of food between, and she gets to practice her fine motor skills. Finally it suggested letting her practice with a Sippy cup, and feeding between sips. I have only tried that a few times, but will continue as she begins to understand that she can get liquid and its good.

I thought I was bribing her to eat, but Joel says I am rewarding her. My most successful strategies is using puffs. I give her the first few bites, which she almost always takes without resistance, and then she begins to shake her head no. So I show her a puff, and say, Holly if you want this puff you need to take a bite. She tries to grab it and I don’t give it to her, I repeat, and then she usually opens wide and I give her a spoon. Sometimes I say two bites, or three, depending on if it is food she like more or less, and then give her the puff. When Joel was feeding her the other day he realized that I taught her open without realizing it. He wasn’t really saying it and then said it by accident and she opened for him. So now he tries to say it more, but she doesn’t always want to open. I think Joel is less constant and gives in and gives her puffs anyways, so she knows he doesn’t mean business. So I assumed I was bribing her with Puffs, but Joel says it is rewarding her for doing the behavior I want, taking a bite, and it is a great way to get her to eat.

She is also slowly expanding her repertoire. We had Mac and Cheese Veggie Dinner the other day which she liked, and she is eating some pasta, and really beginning to like cheese. Next week I am going to give her salmon and peanut butter (not together) based on an article I read about how the Salmon can help prevent allergies, and how you should start peanut butter early, rather than later. But I will give it to her on a cracker though, as a glob of peanut butter is a choking hazard.

The other thing we are doing is mild sleep training. It’s a Hybrid we made up between the cry it out and no tears method. Another article I read say the trade off is time or crying. If you have a lot of time to get your child to learn to fall asleep on her own, like weeks then eventually the no-tears method will work, but if you need your child to learn in a week or a few nights even, then you get a lot of crying, but it happens fast. We just spoke with a family who did this and said it took only three nights. Night one was an hour of crying, night two thirty minutes and night three only a few. Now there son is sleeping on his own. Well we certainly can’t stand to have holly cry even 5-10 minutes, so that won’t work for us, but a little whining, and 1-2 minutes of crying is ok. So we have been putting her in the crib and she plays, for about 20 minutes and then wines, if she is whining we let her continue, once it turns into a cry we go in but do not pick her up (at first at least) usually I can calm her by rubbing her back and “hugging” her as she stands on the rail of the crib. But she reaches up wanting me to pick her up, and even that is heart breaking. I mostly make Joel go in, as she whines to him a lot, but isn’t as desperate and having a crying fit usually. She gets pretty sleepy and he had a lot of hope that this would eventually work. We do this for about an hour. Starting at 10:00 usually at that point, I pick her up and we have watched Baby Einstein and she falls asleep within minutes.

But this is the thing, getting her to fall asleep on her own is secondary to getting her to bed the same time every night. So the other thing we have done is try and create a bedtime routine. Bath (some nights) some Baby Einstein or playtime in Mommy’s lap. After 9:00 most nights we try not to let her crawl and cruise around on her own, as it keeps her keyed up. We tried story time, but the books seem to rile her up, as she gets excited about turning the pages, so we have tried “telling” her a story and singing a song. Then by 10:00 I give her a bottle in bed with me, and hope she falls asleep. Some nights she does, some she is settled, and if I rub her back and head a few minutes she falls asleep. If she is in an active mood where she wants to jump up and won’t stay in bed, then we put her in the crib, and do the “hybrid” method from above. So far we haven’t gotten her to bed by 10:00, but most nights now she is asleep by 11:00. So my question is, is that her natural bedtime, and I need to move late afternoon napes up, or cut them out, or do we need to move up our start time to 8:00 if we want her down at 10:00. I suppose if I can get her to bed at 11:00 every night and then slowly move it earlier, it’s a start. What I plan on doing after a few days of this working well is maybe feed her in the rocker instead of the bed and when she is sleepy but not asleep put her in the crib and see how that works. Oh and yes, lastly we are no longer letting her sleep-in in the morning, mostly. We try and wake her every morning at 8:00 AM. That means though, that Joel has to be awake, so it has been 8:00, 8:30, 8:45 some days, but we are working on it. I think a morning routine is also necessary for her to take her morning nap and be productive at Therapy., so I am in process of creating an entire daily schedule for a guideline, I don’t plan on being stringent, but having it written out helps remind us what the routine should be, even if we don’t follow it every day.

On Friday we went to swimming and had a blast as usual. Holly is starting to not like being tossed up in the air. She used to love it, it was her favorite part of swimming. We would jump up and down when the windows on the bus went up and down. I try it but then sometimes she makes a face that tells me she isn’t having fun, so then I don’t jump up any more after that or let go. I still lift her just above my head, and she still likes that. Maybe she is cold. It is hard to tell. After swimming I was on my way to get a new toy for Holly off of Craigslist, it is a Giraffe that you put a ball into the mouth and it twirls around and drops out of one of four exits. It was only 10$ but it didn’t have any of the balls. I thought our Bubble Gum balls would fit, but they are a little too big, so we need to get some smaller ones. The toy is normally like 39.99$ though, so it is still a good deal I think. It ended up being the same person I got the exersaucer from a while back. Well anyways, on my way I was stopped at a light and I had called my mom and a cop pulled up at the other light. I hung up when the light changed green, but a few minutes later he pulled me over anyway. He said it was from talking on the phone, California is pushing a zero tolerance policy and I said, well I wasn’t driving, I was stopped at the light I didn’t realize that wasn’t ok. He said, well you are also not wearing your seat belt. So he gave me a ticket for that. Well I am short, 5 foot, and the seat belt basically cuts across my neck and face and is dangerous to wear, so I show him, and say what do I do? Can I wear it behind my back or under my arm, and he says no that is also against the law. And I have to by one of those seat belt adjustment things, but in the mean time, he can’t tell me not to wear it, but I should do what is safest for me, and he will drive off before I leave. So he basically told me not to wear it. Go figure, so now I have to figure out how much the ticket is for.

We also had Xray's done and went to UC Davis Mind Institute this week, I will update you on this tomorrow.