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 :)

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.

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! :)