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!

Wednesday, August 22, 2012

The Birthday Boy!

Happy Birthday Loganator! Logan turned 4 on August 1st, but with the new baby in the house we had to post-pone his party until August 18th. We decided to celebrate this year at the local Chuck E. Cheese's. When you book a party there, you get things like a reserved table, tokens for games, but you also get a hostess. I didn't really think too much about what that would really entail though until the party was already underway.

The day of the party, we had a pretty good turnout! When we got there the hostess had our table setup with Logan's name on his balloon, decorations on the table, and she was asking about our pizza and drink order. The kids were off playing games, the adults were mingling and guests were still arriving. It never even crossed my mind to tell the hostess Logan is special needs. I always tell doctors, dentists, friends, but didn't think of telling our hostess. 

The hostess brought us pizza and plates, and told us the birthday kids get "special recognition" in the front of the room, so at 6:00 have Logan ready up at the head of the table. We had his cake and candles ready, and brought Logan to the front at 6:00. They started singing and clapping to all the birthday kids, there were 5 or 6 of them. We were watching, wondering how Logan was going to do. If you don't know anything about Fragile X, let me fill you in on something. For some reason, Fragile X'ers usually HATE having people sing Happy Birthday to them. I don't know if they get shy from being the center of attention, or if it's the actual song, but they usually hate it. At first, Logan did great. 

But then, he started getting anxious and didn't want to be a part of it anymore. 

The hostess (on the left in all the pictures) was so great though. Remember that I never told her Logan was special needs, or gets anxious being the center of attention or anything. She just followed Logan's lead, and didn't give up. She didn't force him to do anything he didn't want to do, but she was very patient and kept trying different ways to keep him in the celebration. She never asked why he was acting the way he was, never even brought it up to me or his dad. She kept a smile on her face the whole time, and was really great with Logan. For not being given "the heads up", she was fantastic. I have been thinking about calling Chuck E. Cheese and letting them know how pleased we were with her. She made sure Logan's birthday was a success! :)

 Even Daddy managed to have just a "little" fun haha!
The rest of the party went really well! Logan had a lot of friends there, and he had a blast playing all the games. We were all exhausted by the time we left, and Logan went straight to bed when we got home and slept until 11 o'clock the next day! I'd say he had fun! : )

Tuesday, August 14, 2012

And We're Off!

Fragile X Syndrome. If you look it up, it can sound pretty scary. Especially if you are told your own child has it. One of the things that stood out the most to us when we first started learning about it, was that people with Fragile X may be non-verbal. Or have very limited vocabulary. We were reading this when Logan was 2 years old and didn't have any words yet. Well, I actually take that back. He had been saying "da-da" when he was about 18 months old, but then seemed to have lost that ability by the time he was 2. 

This became my priority in life, to make sure Logan wasn't going to be non-verbal. I started taking him to speech therapy every week, and hippotherapy, and continuing that therapy at home as much as possible. When I looked at this young, blue-eyed, curly haired, adorable little boy, I couldn't imagine him going through life never being able to say a word. Not being able to simply say "cold" if he needs a blanket, or "hungry", or "sad". We were determined to get him talking. 

We tried using PECS, he was not interested. At all. PECS is the picture exchange communication system. We then moved on to sign language. He seemed to show a little interest in what our hands were doing as we signed "more" for example. But he wouldn't copy us. He wouldn't even try. He then started understanding that when we move our hands, he gets something. So then he allowed us to form his hands to sign "more". This went on for almost a full year. 

This is where we were at when Logan started preschool. He had outgrown the Birth-3 program at the local therapy center, so for him to continue receiving the most therapy, he would go to preschool at an elementary school. When we were going through his education plan with his teachers, they asked how he communicates. That's a good question! I told them that he hadn't shown any interest in anything we'd tried so far. They decided to try the PECS system again. Worth a shot. Well, once he saw the other students getting food and toys they wanted by signing with their hands or using their words, he was not about to be left behind. His first week of preschool, he signed "more" when he had finished his lunch at home with me. I was so excited!! I called everyone I know, including his teacher. He hadn't done it at school yet, we think he wanted to practice at home first where he was more comfortable. Well when he saw my reaction, he knew he'd done something great. That was where we took off. 

Fast forward a few months, Logan was signing More, All Done, Bye Bye, Eat, and Shoes. He was so proud of himself, signing whenever he could. We were thinking this is okay, if Logan is non-verbal but can use sign language, that's something we can deal with. He can still express what he needs/wants. That's pretty much the most important thing. 

Then, Logan started using Gramma and Grampa's iPad. 

There are numerous games that have animals making sounds. Logan started to recognize these animals, and their individual sounds. We got Logan an iPad for home as well, so he was able to play iPad any time he wanted. One day, he pointed to the cow and said "Mooooo". It was the cutest thing I'd ever seen, and the best sound in the world. He then saw a cow on tv, and said "Moooo". Pointed to a cow in a book, and same thing, he gave a big long "Moooooo". I counted this as Logan's first word, and we were all in tears we were so excited and proud. After that, Logan took off. He copies animal sounds, he signs and says words at the same time, he is copying words right after we say them, he's doing great. As of today, Logan can say Hi, Moo, Baa, Hi Dad, Mommy, Melanie, Baby, Bubble, Bob (for Spongebob), Uncle John, Yes, All Done, Yay, More, Bye Bye, Vroom (whenever he sees a car, particulary Grampa's mustang LOL!) and probably even more than I have even heard yet. When he doesn't understand how to say a word, he hums the correct number of syllables. Whatever works though, I say! He still gets his point across. We are so so so proud of our little talker. I was listening to Logan play and talk today, and remembered when we couldn't get him to even point to a picture of what he wanted. He has come so far, and every word is now that much more special, coming from him. He is no longer non-verbal, and it makes me so proud, knowing how hard he works to get those special little words out. He's our amazing little Fragile X'er, and he definitely makes every day special.

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 for more information on Fragile X Syndrome.

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