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! :)

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