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 :)

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! :)

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 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.

A picture speaks a thousand words... or at least one.

Logan and I just got home from Speech Therapy, and since he tried to fall asleep when we were about 30 seconds from home, he's now wide awake and refusing to take his nap. I poured myself a fresh cup of coffee, and I can hear him in his room jumping as always (he already broke his first crib from jumping!) and laughing. Which reminds me, in honor of Dr. Seuss' birthday yesterday, I took some pictures of Logan's room I've been working on:

Logan seems to like it, and I was able to re-use a lot of the decorations from his Dr. Seuss birthday party from last summer, score! He has quite a few Dr. Seuss books, but I can't keep them on display in his room for very long, he grabs them quicker than I can set them up. This boy loves his books!

It was great talking with his Speech Therapist Kerry today about the Fragile X conference. She was ready to soak up whatever information I was willing to give her. As soon as I gave her an example of how Logan would learn best "indirectly" as Marcia Braden had taught us, she was very excited to hear it and started talking about she does believe this, giving examples of things Logan has learned that neither of us showed him how to do. Logan absolutely loves Kerry, but unfortunately she'll be going on maternity leave at the beginning of next month. We're happy for her, don't get me wrong! But now we need to figure out an alternative for Logan's speech. It's not something I'm willing to take a break from at all. 

Speaking of speech therapy. Logan is non-verbal. He can't tell us when he's thirsty, hungry, overwhelmed, tired, or needs a diaper change. We have been trying to figure out a way for Logan to be able to express his needs in a different way. We have been giving Logan access to Goldfish boxes, yogurt containers, all his favorite snack choices that he can then give to me when he wants one since he can't tell me with words.

This is to prepare Logan for the PECS (Picture Exchange Communication System) that is widely used for non-verbal or speech delayed children. Although, Logan isn't quite seeing that a picture of a "Cheez-It" is the same thing as the actual yummy cheesy cracker he can stuff his mouth full of. After seeing some of the educational systems Marcia Braden has available for FX children, I decided rather than an actual box of Cheez-Its hanging on the wall or fridge, maybe I could find a miniature of it. Kerry suggested putting a magnet on them and hanging them on the fridge, which I agree with. That way Logan will see it, and make the connection that it's in the kitchen, and bring it to me to show he wants a snack. Now my mission for the next few days will be to find miniatures of all Logan's favorite foods! Fun!

I know I keep talking about this Fragile X conference, but it made such a large impact on me that I can't stop thinking about it! I am so glad we went, and I feel like it not only taught me a lot about my son, it also prepared me for what the future might hold. I was able to meet an adult with Fragile X, and see how he interacted with everyone at the conference. It was great for me to see, and he did very well I might add! We also watched some videos of FX children in junior and senior high school. This part of the conference was very educational, but very very hard to watch. It showed the obstacles some FX children have to go through, from time at the library, to PE, to simply eating lunch in the loud, crowded cafeteria. A part of me wanted to say I'd made the decision right then and there to homeschool my little boy forever, but the larger part of me knows that's not fair to him. He would miss out on so much interaction with other students, and things like music class, that I'm sure he'd really enjoy. I will admit, there were a couple times during the conference that I shed a few tears, but it was good for me to watch and accept that these are all things that could be in our future. 

Logan has been waving "hi" and "bye-bye" like crazy! I seriously think he practices when he's alone in his room and we think he's sleeping. He waves at us, then claps for himself LOL! It's pretty much the cutest thing anybody could ever see. Another obsession that he's had the last couple days is belts. He keeps finding them in our room, and here he comes at me, on a mission, with an adult size belt trailing after him, and he wants to wrap it around my waist. No matter what I'm doing at the time he'll keep shoving that belt at me til I drop what I'm doing and wrap it around my waist, or his waist. This makes me nervous though, and if I have to leave the room for a minute I take the belt with me as I can just see him wrapping it around his neck or something! GAH! I wish he would go back to his shoe obsession! 

Yesterday I participated in the campaign "Spread the Word to End the Word" and took a pledge online that I will not use the "r-word" in a derogatory way. I shared this with my friends, and a couple of them took the pledge too (yay!)! You can do the same here:

www.r-word.org

As I was emptying out some of the last few boxes in our home, Logan kept looking at this large empty box in the living room. I decided to put him in there to see what he'd do and he was so excited! I guess he felt like King of the Castle or something haha! 

Speaking of King of the Castle, Logan made himself a little throne to sit on out of our throw blankets one night while watching Blue's Clues. He sits in the funniest spots in the room, and in the funniest positions while he's watching tv or a movie.

Well since Logan finally stopped jumping and went to sleep, I will end this post here. Be back soon!