Sunday, February 27, 2011

And... still learning....

I can't seem to wake up today! I think my brain is just still processing all the information from yesterday and is refusing to allow me to use it for anything else today. We went to the Annual Fragile X Conference in Seattle yesterday, and oh my Gosh! I received so much great, useful information I couldn't believe it! I knew the conference would be helpful, but there were so many times during the lectures that I felt like they were talking about MY child and telling me exactly what to do to help him! It was so great being around other parents of Fragile X children, I can't even describe what it felt like to be able to relate to them on childcare issues, sleeping issues, and celebrating milestones later than other parents. 
One of the speakers at the conference was the Doctor that Logan sees at the Fragile X clinic so it was great knowing her already but still learning new things. The main speaker at the conference, Marcia Braden was AMAZING. She truly understands Fragile X children and how to prevent behavior issues, and teach them in a different way that actually works. She talked about the LOGO reading system which I am so excited to try! One important thing she talked about was that Fragile X children learn best "indirectly". If I tell Logan, "We're going to the store tonight" he's not going to pay attention or possibly not even remember it later on. But if Logan overhears me tell Michael "Logan and I are going to the store tonight", he's going to soak it up and remember it for a LONG time! That was so interesting to me, and it makes perfect sense for some of the things Logan has learned to do that I have said I never showed him how to do. He  watched me do it and learned better than if I had directly shown him. Very interesting! Marcia Braden has a website that has DVD's and educational tools available:
I have so many notes and information from yesterday that I feel armed for whatever may come our way on our journey with Fragile X. Overall a really good day!

Well Logan is up from his nap now and is trying to close my laptop so I guess that means I'm done with this post! I just had to post about the conference and how much it helped me.

Scratch that, Logan found his shoe so he'll be distracted for a few minutes trying to put it on and take it off his foot. Haha!

Logan is officially a climber now! He's been able to climb on and off the couch for awhile now, but he's never attempted to climb on anything he's not supposed to! I just couldn't bear to tell him to get down when we found him here:
And here's Logan, USING HIS POINTER FINGER! I work on this with him whenever I can. When he's pushing a button on a toy, he uses his thumb and I always switch it to his pointer which he has shown NO interest in using. But I found him using it, and THANK GOODNESS the water dispenser was LOCKED!

How could I almost forget to mention that he copied Mommy and Daddy and can now DIP his food! Daddy always dips his food in ranch, and I showed Logan one time using hand-over-hand, and Logan did this:
(And for those of you shaking your head at me for allowing my child to eat such a horrible thing as FAST FOOD, I promise this is a VERY RARE occurance!)

Just lounging around:
Just in case you can't tell from this photo, Logan is NOT okay with hats! I can't figure out if it's because it's covering his ears, or just the feel of it on his head, or if it's because he thinks he can't get it off. Either way, this new hat is a NO GO.
I just can't get over how TALL Logan is! He's 38.5 inches tall which is in the 90th percentile for height, and 35 pounds which is also 90th percentile. He's always been 90th percentile for height & weight since he was born! Remember that he was a 9 pounder! haha!

This picture is very bittersweet to me. This toy was a present from his Auntie Samantha for his birthday, and I brought it out for the first time recently. I spun him around a few times and he was CRACKING UP! It was the cutest thing ever. He absolutely loved it. But when he tried to do it on his own, you can see the frustration on his face:

The poor guy wanted to do it himself so badly :(
We'll just continue working on his motor planning and the pushing and pulling he would need to do for this toy.
But for now, this is a toy that we'll just play with together. Mommy will spin him as much as his lil heart desires! Because of his sensory issues, Logan for some reason doesn't get dizzy. He actually craves that vestibular input all the time.

Well now that I have all my thoughts organized for the day, it's snack time for Logan! Be back again soon!

Thursday, February 24, 2011

Continuing our Education

We were blessed with a late winter snow last night, so I put Logan down for his nap with his cozy, footed jammies on, and I'm drinking a steaming hot cup of coffee wrapped in a blanket while the fireplace is going. Seeing the cold snow outside makes me even more grateful for a warm, safe house to come home to, and makes me truly grateful for the life I have.It may not be the life I had planned, but I can say I'm truly grateful for what I have.

My last post had us waiting for our first appointment at the Fragile X clinic, and just beginning to learn about this genetic disorder. In the weeks before our appointment, Logan decided to show us that he can do so many things, and gives us hope that things won't necessarily be as bad as they may be portrayed on the internet. He learned to wave bye-bye, he started clapping, and unfortunately he learned how to climb to the top of our stairs. Good for him, but bad for Mommy as I am pretty sure I can feel my heart stop when I see him halfway up the stairs!

Logan is a very quiet, happy, sweet child. He looks you straight in the eye when you're talking to him, and if he looks over and I'm looking at him, he gives me the biggest smile he can. Unfortunately, he also gets overly excited about so many things, and it seems to take over his whole body. This is just a part of the Fragile X. He flaps his arms, and stretches his mouth wide open, and jumps up and down whenever something is exciting to him. He tends to also cross one eye. He is non-verbal, and generally hums in place of talking. He sometimes copies the tone of my voice, but sometimes seems like he just can't. Here is a video of Logan and I "talking" while he's playing in the lake last summer:

Fast forward to our appointment at the Fragile X clinic. We have no idea what to expect. We meet the Doctor, and she's very, very nice. While a nurse is taking Logan's weight and height and listening to his heart, the Doctor is basically giving us a Science class on Fragile X Syndrome. She explains about the X chromosome, and why this disorder affects males so much more often than females (since females have 2 X chromosomes sometimes they use the unaffected X). She also showed us pictures of what the affected chromosome looks like:

Don't worry I'm not turning my blog into a Science class, but this was very interesting to me and it helped me understand this syndrome a lot more. She also explained to us that since this is a genetic mutation of the gene, we run the risk of having another child affected by this. This was devastating news, as do you remember when I mentioned one of my life goals from years ago? To have 3 children, a "large" family like what I grew up with. This was tough news to swallow, that my life was changing even more than I had thought, but we go home from the appointment armed with information about chromosomes and genes, different kinds of therapies to try, and a promise to be back every 3 months.

Life goes on in our household, and Logan continues to go to Physical/Occupation Therapy, Speech Therapy, and sees a home teacher once a week. He is still the sweetest, happiest little boy ever created (haha, I'm so modest I know!) and our love for him grows even more with every passing day. 

Logan was the most adorable curly-headed lil cowboy for Halloween:

Logan enjoys going to the County Fair, and rode 2 of the rides all by himself! He even enjoyed petting the animals!
His favorite thing to do is sit down with a good book. Whenever we can't find Logan or it seems to be too quiet in the house, we always find him sitting with one of his favorite books. 

In fact, this lil boy will read whatever he can get his hands on! 

Logan is currently working on putting his shoes on and taking them off, and putting his clothes on and taking them off. He can take off his diaper (haha!), his shirt, his shoes and socks. He is trying SO hard to learn to lace his shoes, so we are working with him everyday. He puts any shoe he can find on his feet, and even things that aren't shoes. Yes, that's a cup! LOL!

I may have good days, and bad days while accepting this diagnosis, but the most important thing is that Logan is here, he is happy, and he is growing and learning everyday. The future will always be a mystery, but all we can do is take it one day at a time, and just like what Logan is learning to do right now, we just put our shoes on one foot at a time and move forward.
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