More research at the MIND

While we were at the UC Davis MIND institute participating in the sertraline clinical trial, we participated in another research trial. This was going to be taking an MRI of Logan's brain. The research team is comparing images of children's brains who have Fragile X to those of typical children, and also comparing them to children's brains who have autism. 

We want to help Fragile X research as much as we can, so when we were asked to participate in additional research during our stay, I said as long as we don't have to sedate Logan we would love to help. An MRI machine is very, very loud though. Logan is a deep sleeper, but we practiced every night the week before the MRI scan anyway. We went in after he fell asleep for the night, and put earplugs in and headphones on very carefully so we wouldn't wake him. The MIND institute sent us a CD of the sounds an MRI machine makes and Michael copied it and put it on Logan's iPod. We play Enya music on Logan's iPod/iHome every night for him, so once we put the headphones on we switched the iPod to the MRI sounds. These sounds play for about half an hour. He barely even stirred during this whole process. (He definitely gets that from Michael, not from me!)

The night of the MRI, Logan and I reported to the clinic at his normal bedtime. Michael wasn't allowed to be there since he has lots of metal and pins in his knee and the MRI machine is basically a huge magnet- not a good combination! I had to make sure I had no jewelry, bobby pins, zippers, or anything metal on me or Logan. The tech checked us over before we entered the room. The team was so great, they even played Enya over the speakers for Logan, which they had never done before! I donated the Enya CD we brought and used that night since they said they think it would help children in the future to relax and fall asleep. 

They had a sheet draped over the machine so Logan couldn't really see it, and the lights were down low. Logan thought we were just having a slumber party, since they had stuffed animals, pillows, and blankets on the platform outside of the machine. Logan and I laid down with the music playing, and I read him his bedtime story and he had his bedtime cup of milk. He started pointing out different things in the room, kept giggling since I was laying in bed with him in a new place, then in about 10 minutes he was completely asleep. The team came and checked on us, had me climb down from the platform, and gave Logan a few more minutes to get into a deep sleep. Then we went back in and I put his earplugs in and headphones on. We adjusted him so his head was in position, and then we were ready to go. They had me in the room with headphones on, and when the MRI started it made me jump, even with the headphones on. Logan though, slept right through it! The scan lasted for 35 minutes, and every time the sounds changed in the machine it made me jump. The tech said it always makes her jump too, just because it's SO loud. Logan slept the whole time, just fine! The tech watched Logan's face the entire time to make sure he was still asleep, while working the machine. He of course slept through the entire 35 minute scan.

The team was so great, they even let me take pictures after we were finished. Here is Logan still asleep, after the scan is complete:

 Here are some of the images they got from the scan. They also sent us a dvd so we could see Logan's entire brain in 3D!

I think this is just so cool! It's so amazing that this huge magnetic machine can see inside the human skull. Crazy! Anyway, I'm just so glad we could help with Fragile X research of any kind. They said the doctor would also look at the images of his brain to make sure there is nothing out of the ordinary showing up as well. Overall this was such a cool experience!

 

 

The MIND Institute

I've been slacking on making blog posts! We've been so busy, I always think I'll sit down and blog tomorrow, then of course tomorrow comes and I think the same thing. We had some very exciting events happen last month though, so I wanted to be sure to make an effort to get them on the blog. So here I am!! :) 

Logan was invited to participate in a clinical trial taking place at the UC Davis MIND Institute in Sacramento, CA. The clinical trial is being led by Dr. Randi Hagerman. She is the medical director at the MIND, and is just AWESOME. She is a Fragile X expert, she discovered FXTAS which is a carrier condition, and she even climbed Mt. Kilamanjaro to raise money and awareness for Fragile X!! When she invited us to the trial, we knew we wanted to participate but also knew having a 2 hour appointment with her would be definitely worth all the travel! So we agreed to enroll Logan in the trial, which is a double-blind trial for the medication called sertraline. We left for California mid-March. 

We were so nervous for Logan and Baby's 1st plane ride! I don't think I slept at all the night before we left. I had 4 lists of things to pack, 1 for each of us, and a separate list for paperwork for the MIND. We were stressed, excited, sleep-deprived, but somehow made it out the door on time. When we got to security, I was so nervous! They kept sending the diaper bag through the x-ray machine several times, and finally brought it over to me so they could search inside of it. There was a jar of baby food inside that I had forgotten about! For some reason when they tested the sealed jar, it set off an alarm. Which meant they had to do a full body pat-down on either Michael or me, and the agent suggested Michael (hehe). Of course everything turned out fine, the agent said if I had scented lotion on when I packed the jar of baby food that would set off the alarm. Really?!

When they called everyone to board, it hit me just how nervous I was to take Baby on the plane! I knew Logan would do fine, we had his sippy cup ready for him to drink during take-off to help his ears. But Baby is so picky, I didn't know what she would think! Thank goodness our seats were in the very back of the plane. Michael and Logan were seated in front of me, with the seat next to me empty. Both the kids did GREAT! Baby nursed pretty much the entire flight, but that's okay because that meant she was quiet and content. Logan thought the take-off was the coolest thing. He pretty much yelled, "Vroooooom!" He had a blast. He did get a little uneasy during landing, but Michael just reminded him that we were going "Vrooom" and then Logan was happy again.  

When we landed, we couldn't believe how WARM it was outside! Very different from the rain we left in Seattle. We were in heaven! While we were waiting for the kids' carseats, the pilot stepped off the plane. Michael asked if Logan could meet him, and he said of course! Logan got to meet the pilot from his 1st ever plane ride, how cool is that?!

We reported to the MIND institute bright and early Monday morning. Everybody that we worked with was so nice and helpful. It was such a change, having everyone around us know about Fragile X! We didn't have to explain anything, everybody was teaching US for once. The first day was lots of paperwork for us, and lots of testing for Logan. We met with a genetic counselor and went over our family history on both sides. The 2nd day was more testing in the morning, then a physical for Logan. The physician who did the exam was great, he answered all of our questions and knew so much about Fragile X. Then we got to meet Dr. Hagerman! She is so smart, helpful, and energetic! She answered all of our questions about Logan, and she even asked and answered questions about me and my health, since I'm the Fragile X carrier. She approved Logan for the sertraline trial, and we were given the medication (or the placebo) that day. 

While we were in Sacramento we got to do some sight-seeing, and even drove over to Reno one day, and San Fransisco another day. It was so nice to have a little mini-vacation as a family, we didn't want to come home!

We soaked up as much sun as we could before we came home :) We are definitely looking forward to going back to the MIND Institute in 6 months when the trial is over!I would recommend a trip to the MIND institute to any Fragile X family! :)

Our Little Family on the NEWS! :)

Parents vs. School

As a parent, we fight for our children to have the best of everything. The best care, the best education, and the best life they can possibly have, because that's what they deserve. When something is getting in the way of that, we want to fix it as quickly as possible. We never give up and we never settle when it comes to our children. It's just IN us, to fight for our children's needs. I never realized that even just in preschool, we'd already have to be fighting for his needs quite like we are right now. 

Logan is in his 2nd year of preschool. He is in a class that has some special needs children like himself, and some "typical" children. He loves every single second of school. He loves the bus rides, his classroom, his teacher, his friends. He loves singing along with the other students, and thinks school is pretty much the coolest thing ever. We had a great year his first year, and didn't realize it could change so much going into his 2nd year. 

We decided to send Logan to school on the bus from day 1. He is big on routines, so we wanted the bus to be part of his routine from the start. Logan LOVES the bus. He would always get so excited when he saw the big yellow bus coming down the street for him in the morning. The bus drivers always talked about how happy and excited he was the whole bus ride to and from school. They always looked forward to Logan's big happy smile everyday.

The week before school started this year, I received Logan's bus pass in the mail. It said he would be picked up at 7:48am. School starts for Logan at 8:45am. I figured somebody made a mistake somewhere, since last year his bus picked him up between 8:20 and 8:25am, a full half hour later than this bus pass states. I called transportation to get this corrected, and the woman advised me there's no mistake, his bus ride is now about an hour long. I didn't understand why this would be the case, since we only live 10 minutes from the school. She then advised me it's because Logan will be picked up by a school bus that's going to a different elementary school, will drop the students off at that school, and Logan would then get off that bus and get on a different bus that will take him to his own school. I told the woman at transportation this is absolutely unacceptable for Logan. He is only 4 years old, he is special needs, this is not in Logan's best interest to be transferring buses and riding for a full hour every morning. She said there was nothing she could do and ended the call. I immediately called Michael and told him about Logan's route. He of course was just as against this route as I was. He said he would make some calls. 

All throughout the day that day, Michael kept checking in with me and telling me how frustrated he was. He made call after call to transportation, every call was the same- there's nothing they can do. He was trying to talk to supervisors, and people were telling him he can't. He was hitting dead end after dead end. I called back to transportation to see if I could talk to somebody who might actually try to resolve this, and was treated the same way as Michael. They all kept saying there's no other routes available, they have other calls to take, that's it. Quit wasting their time was basically the vibe that we were both getting from transportation. 

Michael ended up talking to somebody who works at the district level, and he reacted the same way, and ended up ending the phone call while Michael was still talking! That's when Michael got so fed up that he called the problem solvers at our local news station. Since nobody wanted to help us, he found somebody that will stand up for us. Jesse Jones at King 5 News gladly took this on, and immediately started doing research and investigating. He had never heard of Fragile X Syndrome, so he and his team started researching it and figuring out how it affects Logan. They came out to our home and interviewed us on the details of the route and Logan's disabilities. They have made us feel like somebody finally cares, somebody is finally willing to listen! 

School has been in session since September 10th. Today is November 5th. Last week, we were told Jesse Jones and his team now have all their ducks in a row and are going to start contacting the school. The very same day we were told this, a public relations rep from the school district called me. He left a voicemail stating he would like to discuss Logan's bus route asap, since he was advised we are unhappy with it. He called twice that day actually. And the next morning. Then again the next day, and also emailed us. We didn't want to discuss anything with him until we talked with the Jesse Jones team first. When we called the representative back, we setup a meeting for him and Michael and I to discuss this further.

We had this meeting this morning. There was nobody there to represent transportation. He didn't even have a proposed new bus route to present. He asked us what WE propose. How would we know what buses are available to pick him up? We don't! We had happened to run into Logan's old bus driver from last year on the way into the meeting this morning, and she knew what was going on. She said her bus is right by our house every morning so Michael asked her if she felt it would be possible for her to pick Logan up after the transfer at the other school. She said she didn't see why that wouldn't work. We advised the district rep of this, and he said he'll check with transportation. One proposal he did have, was to compensate us for the mileage if we just continue to drive Logan to school instead of using the bus. Michael reminded him that since he is special needs, the district is legally obligated to provide transportation to and from school for him. Logan loves the bus, it's part of his routine, it's not fair that he can't have that. The rep said he had reviewed Logan's IEP for this year and it does state he is to have bus transportation, but it doesn't state he can't have a transfer or a limit on the length of the ride. Lesson learned for me I guess! I said I never would have even thought that a special needs preschool student would have a transfer, or an hour long bus ride, so why would I think to put it in his IEP that these are not okay for him?? I know for next year now though, that's for sure! 

Another topic for the meeting was the lack of customer service we received from transportation. The rep said the transportation office receives a lot of calls every day, so they can't always give us the time we need to discuss things. I couldn't believe that was the excuse they were using! I told him I've worked in a call center for a bank, where there is a call waiting as soon as you hang up from the previous call, and you still have to be able to give that customer whatever they need. You can't say sorry Mr. Customer that you're having a problem, but we have other customers calling in right now so we can't discuss this anymore. That's ridiculous! I also asked the rep why this is the first time we've met him, when we were trying so desperately to find the right person to talk to back in September. Why did it take us contacting the media to finally be able to even START getting this resolved? He said it may appear that he only called us because Jesse Jones called the school, but he said he swears he was just given our file the day before Jesse called, and was getting ready to call us. LOL!! School has been in session for almost 2 months, and the first day somebody decides to actually help us just HAPPENS to be the same day Jesse Jones calls? I couldn't help but laugh and shake my head! Does he think we'd actually believe that?!

We left the meeting feeling like it was a huge waste of time, although it did feel good to finally have somebody from the school actually listen to us. It was nice to be able to tell him how poorly this whole thing has been handled. I know the only reason he's helping us is because the local news contacted him, so it doesn't feel THAT nice though!

Jesse Jones and his team are meeting with this same guy today (which is why this guy was in such a rush to meet with us, he wanted to be able to say he's working with us on resolving the issue). I am so grateful for a problem solvers program like Get Jesse on King 5 News, because who knows how long it would have taken somebody from the school to call us, if anybody ever even would have. It's hard enough for a parent to be able to navigate the school system with a special needs child, and when the school just doesn't seem to care it makes it that much more difficult to get what that child needs. I don't know why it always has to be the Parent vs the School. I wish we could work together better, rather than it being such a fight. Unfortunately, from talking with other parents with special needs children, this is how it always is. A fight.

I will update again soon on this issue, hopefully Logan will be happily waving from the window of his bus on a new route that works for him! If not, we'll just continue the fight! Logan deserves much better than what is being given to him, and we won't stop until he gets the best possible treatment!

Blue's Clues!

I remember, a long long long time ago, playing "store" with my little sister. One of us would go "shopping", and the other would be the cashier. We had a little toy register with fake coins, and when you open the register it would "ding!". We would take turns buying the items, and then running the register. I didn't know until I had my son, that this pretend play is actually a milestone for children. When they hold a pretend phone to their ear, or push toy cars around saying "vroom!", these actions show they are pretending, and it's not something you can teach your child.

I remember being at a doctor's appointment, discussing Logan's other developmental delays, and the doctor asked if he was pretending yet. I laughed, thinking he was just joking. But he wasn't joking, this is something they actually use as a milestone. I stopped laughing pretty quickly though, because actually, Logan wasn't pretending. We'd never seen him "talk" on a phone, or play with a toy car correctly. He didn't play much at all, actually. He preferred to just sit by his bookshelf, looking at book after book, turning the pages and looking at the pictures. He loved looking at any book, actually, and still does.

Like any other delay, it was hard to realize Logan wasn't doing something he was supposed to be. This was before we had the diagnosis of Fragile X, so we were still wondering why. Why he wasn't talking, or throwing a ball, or now- pretending.

Logan has been in physical therapy since he was 18 months old. One of the things we demonstrate when we're at therapy, is how to play with toys. This included a toy phone for awhile. He showed interest in it, but we realized it was just to push the buttons and hear the sounds. He never held it up to his ear to pretend, even when we did it first.

Around the same time Logan started preschool, when he was 3, he started carrying my purse around, sometimes putting random things inside. It was pretty cute, and we commented on how he was "copying" Mommy. He did this for a little while, then started waving bye bye when he was carrying my purse. Then it evolved to waving bye bye, and heading for the front door. Then he was putting on my shoes, or Daddy's shoes, and carrying the purse, while heading for the front door and waving bye bye. One day we realized, he's pretending to leave! He's pretending that he's the adult, and leaving with his purse and shoes. If he saw keys anywhere, he would have those out in his hand when he "leaves", like Mommy does. We think he's starting to pretend! He's reached a new milestone! 

Recently, Logan has started grabbing our cell phones, putting them up to his ear and "talking"! We never thought we'd be so happy to see our child stealing our cell phones whenever he can! He is getting clearer and clearer. You can hear him say "hello", and he has a little conversation. He leans against the wall, crosses his ankles, and has a casual little phone conversation, it's the cutest thing. It never gets old, every time I see Logan "talking" on the phone I get all excited, thinking "He's pretending!". Love it.

One of Logan's favorite shows is Blue's Clues. If you've never seen it, the main character goes around collecting 3 clues, and has a little notebook that he draws these clues in. At the beginning of the show, he always has to get his notebook out from his side-table drawer. Logan has a couple little notebooks that he loves to scribble in, and we realized he is pretending to be on Blue's Clues! He sits down, "thinks" with his finger on his cheek, holds up the notebook and sometimes draws in it. The other night, I caught all this on video! 

This was very exciting to see, because not only is he now definitely pretending (at one point he stops to answer his "phone" haha!) but he also is understanding what's going on in his favorite show. He's trying so hard to say new words too, we're so proud of him. Logan is making so much progress right now, and we're loving every minute of it!

The Birthday Boy!

Happy Birthday Loganator! Logan turned 4 on August 1st, but with the new baby in the house we had to post-pone his party until August 18th. We decided to celebrate this year at the local Chuck E. Cheese's. When you book a party there, you get things like a reserved table, tokens for games, but you also get a hostess. I didn't really think too much about what that would really entail though until the party was already underway.

The day of the party, we had a pretty good turnout! When we got there the hostess had our table setup with Logan's name on his balloon, decorations on the table, and she was asking about our pizza and drink order. The kids were off playing games, the adults were mingling and guests were still arriving. It never even crossed my mind to tell the hostess Logan is special needs. I always tell doctors, dentists, friends, but didn't think of telling our hostess. 

The hostess brought us pizza and plates, and told us the birthday kids get "special recognition" in the front of the room, so at 6:00 have Logan ready up at the head of the table. We had his cake and candles ready, and brought Logan to the front at 6:00. They started singing and clapping to all the birthday kids, there were 5 or 6 of them. We were watching, wondering how Logan was going to do. If you don't know anything about Fragile X, let me fill you in on something. For some reason, Fragile X'ers usually HATE having people sing Happy Birthday to them. I don't know if they get shy from being the center of attention, or if it's the actual song, but they usually hate it. At first, Logan did great. 

But then, he started getting anxious and didn't want to be a part of it anymore. 

The hostess (on the left in all the pictures) was so great though. Remember that I never told her Logan was special needs, or gets anxious being the center of attention or anything. She just followed Logan's lead, and didn't give up. She didn't force him to do anything he didn't want to do, but she was very patient and kept trying different ways to keep him in the celebration. She never asked why he was acting the way he was, never even brought it up to me or his dad. She kept a smile on her face the whole time, and was really great with Logan. For not being given "the heads up", she was fantastic. I have been thinking about calling Chuck E. Cheese and letting them know how pleased we were with her. She made sure Logan's birthday was a success! :)

 Even Daddy managed to have just a "little" fun haha!

The rest of the party went really well! Logan had a lot of friends there, and he had a blast playing all the games. We were all exhausted by the time we left, and Logan went straight to bed when we got home and slept until 11 o'clock the next day! I'd say he had fun! : )

And We're Off!

Fragile X Syndrome. If you look it up, it can sound pretty scary. Especially if you are told your own child has it. One of the things that stood out the most to us when we first started learning about it, was that people with Fragile X may be non-verbal. Or have very limited vocabulary. We were reading this when Logan was 2 years old and didn't have any words yet. Well, I actually take that back. He had been saying "da-da" when he was about 18 months old, but then seemed to have lost that ability by the time he was 2. 

This became my priority in life, to make sure Logan wasn't going to be non-verbal. I started taking him to speech therapy every week, and hippotherapy, and continuing that therapy at home as much as possible. When I looked at this young, blue-eyed, curly haired, adorable little boy, I couldn't imagine him going through life never being able to say a word. Not being able to simply say "cold" if he needs a blanket, or "hungry", or "sad". We were determined to get him talking. 

We tried using PECS, he was not interested. At all. PECS is the picture exchange communication system. We then moved on to sign language. He seemed to show a little interest in what our hands were doing as we signed "more" for example. But he wouldn't copy us. He wouldn't even try. He then started understanding that when we move our hands, he gets something. So then he allowed us to form his hands to sign "more". This went on for almost a full year. 

This is where we were at when Logan started preschool. He had outgrown the Birth-3 program at the local therapy center, so for him to continue receiving the most therapy, he would go to preschool at an elementary school. When we were going through his education plan with his teachers, they asked how he communicates. That's a good question! I told them that he hadn't shown any interest in anything we'd tried so far. They decided to try the PECS system again. Worth a shot. Well, once he saw the other students getting food and toys they wanted by signing with their hands or using their words, he was not about to be left behind. His first week of preschool, he signed "more" when he had finished his lunch at home with me. I was so excited!! I called everyone I know, including his teacher. He hadn't done it at school yet, we think he wanted to practice at home first where he was more comfortable. Well when he saw my reaction, he knew he'd done something great. That was where we took off. 

Fast forward a few months, Logan was signing More, All Done, Bye Bye, Eat, and Shoes. He was so proud of himself, signing whenever he could. We were thinking this is okay, if Logan is non-verbal but can use sign language, that's something we can deal with. He can still express what he needs/wants. That's pretty much the most important thing. 

Then, Logan started using Gramma and Grampa's iPad. 

There are numerous games that have animals making sounds. Logan started to recognize these animals, and their individual sounds. We got Logan an iPad for home as well, so he was able to play iPad any time he wanted. One day, he pointed to the cow and said "Mooooo". It was the cutest thing I'd ever seen, and the best sound in the world. He then saw a cow on tv, and said "Moooo". Pointed to a cow in a book, and same thing, he gave a big long "Moooooo". I counted this as Logan's first word, and we were all in tears we were so excited and proud. After that, Logan took off. He copies animal sounds, he signs and says words at the same time, he is copying words right after we say them, he's doing great. As of today, Logan can say Hi, Moo, Baa, Hi Dad, Mommy, Melanie, Baby, Bubble, Bob (for Spongebob), Uncle John, Yes, All Done, Yay, More, Bye Bye, Vroom (whenever he sees a car, particulary Grampa's mustang LOL!) and probably even more than I have even heard yet. When he doesn't understand how to say a word, he hums the correct number of syllables. Whatever works though, I say! He still gets his point across. We are so so so proud of our little talker. I was listening to Logan play and talk today, and remembered when we couldn't get him to even point to a picture of what he wanted. He has come so far, and every word is now that much more special, coming from him. He is no longer non-verbal, and it makes me so proud, knowing how hard he works to get those special little words out. He's our amazing little Fragile X'er, and he definitely makes every day special.