Showing posts with label syndrome. Show all posts
Showing posts with label syndrome. Show all posts

Wednesday, October 1, 2014

Been awhile....

My 2 little babies are growing up so fast! They are both reaching new milestones every day. I love seeing them be able to accomplish something they've been working at, they get so proud of themselves! Kendallyn always says "You did it!" Cracks me up every time. I'm sure she'll learn the difference between You and I soon. :)
Logan is 6 years old, and in case you haven't read a single thing on this blog, (which you should! Go start at the beginning!) he has Fragile X Syndrome. This causes cognitive and some physical delays. We're working on milestones that many parents of 6 year olds haven't thought about in years (like potty training!). And that's ok, this is all part of what makes Logan who he is- which is a sweet, super funny, very social little guy. 

This past week Logan learned how to bathe himself, which is huge! He still needed a little help not missing any spots in his hair, but he can now wash his body by himself and so far hasn't missed any important areas ;) He knows which bottle is the soap and which is the shampoo, and has created his own little routine. This is all so important for creating independence. The life skills are what I get most excited about him learning. 
In therapy this week, Logan drew a plus sign AND a circle when prompted. This is huge if you know Logan at all, he used to HATE drawing, coloring, any sort of table work. Over the summer he started showing more interest when he saw Kendallyn coloring. Now he's willing to work on writing and drawing anytime he's asked, and his favorite is painting. He's starting to figure out tracing, which will be good for learning to write his name. Can't wait!

Kendallyn is 2 years old and is our little talker! She has started putting together sentences on her own, not just copied sentences. Her favorite one right now is "Go sit down Mommy!" So she can sit on my lap with a book and of course then she'll be read to. Her favorite thing in the world is being read to! Especially when her Grampa reads Cinderella, her ultimate favorite book. 
Can I just mention how STRONG this little girl is?? She loves doing pull-ups of any sort wherever she can! She can also lift & carry things that surprise Mommy everyday. 
Kendallyn has been showing a lot of interest in letters lately, and so far can recognize and point out every letter up through L! She has been working on singing the alphabet too, but only if she thinks nobody is listening except Brother. I will find a way to record her singing it, pretty sure it's the cutest thing in the world. Especially the end, she says "Now my no my ABC, time with me!" And claps. Adorable.

Both the kids are at such a fun age right now, it's awesome to watch them grow and learn. I love watching them play together too, Kendallyn copies Logan on certain things, and Logan copies her on other things. At one point Logan had then both marching around the house saying march! march! Follow me! While wearing bowls as hats and spoons as their marching batons. They're total BFF's! Fingers crossed it stays this way :)




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! :)

Tuesday, August 14, 2012

Our Journey Has Taken An Exciting Turn!

So sorry it's been so long since I made a blog entry! I need to re-design the layout of this blog now because... we now have a brand new baby girl! My Journey Through Motherhood has taken a new direction! 
Kendallyn Hope was born 7/7/12 at 8:40pm. She weighed 9 pounds even, and was 18.9 inches long. She was 9 days late, which was unexpected since big brother Logan was a week early on his own. Big brother is adjusting very well to the new baby, he loves saying "Hi" to her, and if she is fussing he does whatever he can to make her happy. He has done really well with her crying so far, which is a huge relief. He is very sensitive to loud sounds like sirens, or yelling, but he's more concerned about making sure she's okay rather than the actual sound of her crying. 

It's been over a year since my last blog post, which means I didn't post anything while I was pregnant with Kendallyn. If you read any of my earlier blog posts, you might be wondering about the Fragile X. As I've mentioned before, FX is genetic. Which means every child we have, has the chance of having it, or being a carrier of it. It's not just a random condition. Anyway, when we decided to have another child, we thought of every possibility that could happen with this pregnancy. We love Logan very much, and wouldn't have been heartbroken if we have another little FX'er. We thought about IVF, adoption, egg donation, etc but none of those were for us. We decided to take the natural course, and let God make the decisions for us. 

We still have not had Baby K tested. I figure we have the rest of her life to know whether she has Fragile X or not. So far, the only thing we've noticed is that she is super smart! She gave her first true, on-purpose smile to Mommy at 2 weeks old! Nobody believed me of course, until she gave one to Daddy, then Gramma. She is now 5 weeks old and smiles every time she sees her brother, or the mobile on her swing, or a friendly face. 

I gave Baby K some tummy time yesterday, and she looked like she was about to take off crawling! Her knees were completely off the ground. I think we're going to have to really watch this one, she's ready to grow up too soon! 

Life is definitely busy around here now. We're busy, but blessed. Kendallyn has had some reflux/colic issues, an ER visit for choking/not being able to breathe, and loves to keep Mommy and Daddy up until 3am some nights when her tummy hurts. But otherwise she is a very beautiful, smart, happy little chunkster. We do have her on Zantac which has helped the reflux a lot. Her 1 month checkup was last week, and she weighed 11 lbs 8 oz! That's in the 95th percentile! It makes me happy that obviously breastfeeding is going well and she's getting enough to eat. I do plan to return to work part-time, but I wanted breastfeeding to be well established before I started back. Only problem is, now she won't really take a bottle! We still have a couple weeks to figure that one out though. 

This blog will now be about Logan, Baby K, Fragile X, baby products we love, events in our family, pretty much everything. It won't be strictly about Fragile X any longer. There's much more to our family than just Fragile X, so this blog will be the same way :) 

Thanks for reading about our new little (or not so little haha) addition to the family! If you haven't, please go back and read this blog from the beginning. Makes for a great rainy day reading. Or sunny day, or whatever excuse you want to have! Thank you! :)

Visit www.FragileX.org for more information on Fragile X Syndrome.





Sunday, June 19, 2011

Happy Father's Day!

Today is Father's Day, so I wanted to make sure all the great fathers in my life are being recognized! My Dad, to begin with, is the most patient, caring, and loving dad in the world. That's a fact. ;) He helped raise 4 of us kids, and made sure we had everything we needed, and pretty much everything we wanted haha! He still does, to this day, even though his youngest is already 26. He loves and adores his grandson Logan, and is probably his biggest fan! He is always willing to take Logan for walks, or even just carry him up and down the stairs over and over, which Logan loves. He also came to the Fragile X Conference, to learn as much about his grandson as he can. He wears his Fragile X awareness bracelet every single day, without fail. We appreciate everything you do! Happy Father's Day Dad, aka Grampa! :)
 ^Grampa and Logan, at Logan's first baseball game :)

I also need to brag a little bit about Michael, Logan's daddy, and my significant other. He is a wonderful father to Logan, and is so patient and understanding with him. Michael is always the life of the party, and there is certainly never a dull moment whenever he's around! This is perfect for Logan, who sometimes needs a little "push" to do anything active. Michael and Logan have spent some of the best Saturday nights just horsing around and laughing until we all couldn't breathe. Logan absolutely adores his Daddy :)

When Michael and I met, we had no idea that I was a carrier of Fragile X Syndrome. We had no idea until Logan was 2 years old. When we were given the diagnosis (over the phone! Yeah, still a little bitter about that), we had no idea what Fragile X even was. We were both scrambling to find some information, to understand how our little boy could be "fragile"?! When we researched and found out it's a genetic syndrome that can cause significant developmental delays, saying it was heartbreaking news would be putting it lightly. When we realized Logan inherited the gene from me, Michael never once said anything about it. He has only focused on getting Logan the most help he can, rather than "who's fault this is". Sure, he has mentioned there are some things he's disappointed about, he always pictured his son being the captain of the football team, or driving a big lifted truck alongside him while they go off-roading. These things aren't impossible of course, but Michael has accepted the fact that they may not happen. Michael has also accepted that Logan needs extra help with things, and Michael has been there to help every step of the way. Michael knows that Logan's still not the sturdiest of walkers, and makes sure he always has Logan's hand, just in case. When he can tell that Logan's starting to get a little overwhelmed in public, he is a champion at distracting Logan and getting him to forget all about what's going on around him. Michael makes an effort to be at every doctor's appointment he can be, and helps with the physical therapy we've learned to do at home. If he feels a doctor, or anyone for that matter, has not given Logan everything he deserves, he doesn't hesitate for a second to tell them and defends Logan to the end. Michael even went to the playgroup at the therapy center, where he was the only dad in a room full of moms hehe! That's dedication! For being a first time dad, Michael has adapted extremely well to the extra challenges Fragile X Syndrome has brought into our lives. 

Logan and Michael are 2 peas in a pod, with their bright blue eyes, and their love of loud music! But especially, when it comes to eating. Oh my goodness, we never have a single crumb of leftovers in the house. Every day I'm still shocked at how much they can both eat in one sitting. I just remind them both, that one day all this yummy food they love eating will catch up with them...and I'm going to be more than ready to say, TOLD YOU SO! ;)

When Michael puts his mind to something, he doesn't quit until he's achieved his goal. (most of the time, anyway. If his goal is hanging up pictures that I asked him to hang, then that's a completely different outcome!) There was a week awhile back, when Logan was just having a tough time. He was very short-tempered, and realized Mommy and Daddy move really quick when he screams REALLY LOUD. Well, I was discussing this new screaming habit with his physical therapist. She suggested a place where Logan could go and be by himself, to cool off and calm down. He could read his books, or stare out the window, or whatever he feels he needs to do. The next day, Michael brought home a humungous double layer cardboard box from work. That same night, he constructed "Logan's place", a very sturdy playhouse, equipped with a light and light switch that Logan LOVES. I can't even tell you how many times we've used this house as a "cool down" place, and it works! Logan loves it, and even though we do put him in there when he's upset, it's not a punishment for him, and he doesn't seem to view it that way, he just knows it's "his" own little place. We love to go in there with him and read books before bedtime, he gets SO excited to share his house with Mommy and Daddy. I would say Michael did a pretty good job making sure Logan has a "cool down" place, which helps Logan, but most of all helps Mommy! :)
So Happy Father's Day to Michael, who has definitely stepped up and been the best dad he can be, even when life has thrown some curve balls our way. I appreciate the fact that he has been there for Logan, and for me, through all of the good times and bad. A lot of guys can't handle being a father, let alone a father to a special needs child, and Michael is doing an excellent job! Very deserving of the title DAD! :)
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