Tuesday, September 16, 2014

Just Catching Up!

It's really been so long since I last blogged, I woke up last night and wanted to jump on my computer at 3am. Blogging used to be my therapy, blogging helped me process events and make important decisions. I don't know why I've been away so long! Life always gets in the way I guess.

It is September, 2014. My husband, Michael, and I now have a 6 year old and a 2 year old! Logan just started 1st grade! I swear, once you have children, life begins moving in fast forward! Honestly though, I'm loving the ages of my kids right now. Kendallyn is so independent, she wants to do everything herself and help in any way she can. She is talking in little sentences, and wants to know what everything is in her world around her. Logan can completely dress himself, all the way down to his shoes. He has learned to drink through a straw, which means no more sippy cups! He is not yet potty trained, but we're still working on it. He is also talking in short sentences, and even sings songs to Mommy and Baby Sister. Twinkle Twinkle is his favorite :)






Checkups! :)


Kendallyn can swing like a big girl!


Our first skate night!


Logan LOVES skating!


Logan completed another hippotherapy session last winter!


1st trip to the library


:)


Kendallyn learned how to blow bubbles! 


Messy fun is the most fun!


Logan has a new therapist for OT and we LOVE her!

That's most of the major stuff that's happened since my last post (over a year ago!), and I will make a post later today about Logan and school. He is in 1st grade, and there's a definite love/hate relationship with our family and school! 

Be back soon! :)


Thursday, October 17, 2013

Update On My Journey Through Motherhood

I've been a horrible blogger lately! I keep letting life get in the way. I'm going to get this blog up to date, it may take a few posts but I'm going to make sure I get it done! 

Logan is now in Kindergarten! He is in a functional core class (special education) for most of his school day, and he's now at school ALL DAY! I was so nervous for him to eat lunch at school, and be there for so long, but he loves it. He gets speech therapy, physical therapy, and occupational therapy while he's at school. His teacher is great, I feel completely comfortable talking to her, she never makes me feel like she doesn't have time to tell me about Logan. He is the first student out of his class to be included in the general education Kindergarten class, and he's doing really well! He starts his day with the Gen Ed class, doing their circle and calendar time for about 30 minutes, then he goes back to his functional core class. His teacher said the Gen Ed students love Logan and all say hi to him whenever they see him in the hallway. Unlike Logan they are only at school for half of the day, so they don't share recess or lunch or anything else unfortunately. He has, however, found a group of general education 3rd grade girls that he loves to hang out with at recess time, and they love hanging out with him! How cute is that? My little ladies man ;) 
Logan loves to copy. Especially other children. This is why I told his teacher he needs to be exposed to the "typical" Kindergarten children as much as possible. He copies them when they talk, sing, play, and now he even raises his hand and waits to be called on just like the other students! He never spoke or signed a single word until he started preschool when he was 3 and was exposed to the other children everyday. This is why inclusion in the general education class is so important for him, and luckily his teacher made it happen right away. He loves school and is so excited when he sees the bus coming to pick him up every morning! 

 1st Day of Kindergarten! 
Getting on the bus on his 1st Day!


Logan's Kindergarten picture! I'm not entirely sure if I like it, Logan loves to smile and this picture doesn't look like his normal smiley self! Picture retakes may be in our future!

Kendallyn is now 15 months old, and walking all over the place. She is definitely our little talker, she has a pretty large vocabulary! Her first word at 10 months was "Yay!"! Adorable right? She was saying 18 different words at her 1 year checkup, and now at 15 months she says around 30. She even says Thank You! One of her favorite times of day is picking up Brother from the bus after school. She and Logan love to watch the bus turn around in the cul-de-sac after it drops him off, they wave and wave until they can't see it anymore. She always says "Bye Bus!" just like Big Brother.

 Giving messy kisses :)
She broke into this bag of tortilla chips and was in heaven!

Another exciting thing going on with our family is that a spot opened up in hippotherapy for Logan! He's been on the waiting list since August of last year! He starts on the 25th and he will be SO excited. He did hippotherapy when he was 2.5 years old, and he loved it. In case you are wondering what the heck sort of therapy involves hippos, I'll explain :)
Hippotherapy is actually therapy on horseback. Logan rides without a saddle, so that he can get all the sensory input from the horse walking, and also so it will strengthen his core muscles since he has to hold himself straight without the help of a saddle. His speech therapist walks on one side holding his hip/leg while I walk on the other side also holding his hip/leg. Logan absolutely loves the horses, and it's a great motivator for him to speak & sign. He will have to say more, faster, go, etc. If you've never heard of hippotherapy, I suggest you look it up on YouTube and watch these horses with the children. The horses are so well behaved and well trained, and the kids usually make SO much progress with this therapy. It made me cry the first time I saw Logan and his horse Spud together, the horse is so gentle and patient with Logan and he made Logan so happy! When Logan got more comfortable with the horse after a few sessions, his therapist had the horse actually trot and Logan thought that was the funniest thing he'd ever experienced. He didn't want to stop!

That's most of what's been going on in our little Fragile X Family. We're getting ready for Halloween now, Logan pointed to an Angry Birds costume in the catalog when I asked him which one he liked, so I guess he'll be a big red Angry Bird for Halloween. :) We're hoping to go to a pumpkin patch soon so we can pick out all our pumpkins and get to carving! Pictures to come later! :)




Sunday, April 21, 2013

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! :)

Monday, November 5, 2012

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!




Thursday, August 23, 2012

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!

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