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.