First, I want to go over the speech evaluation. There are two types of speech, one is Understanding and I forget what the other one is called, but it has to do with your ability to say words. Jaxson tested at the 8-9 month level for understanding (same place he is with his other development), and he tested at the 6-7 month level for the other. The therapist said that he tested lower than she expected on that one, but it's mostly because of his cleft. He will only have the ability to say certain things while the cleft is open, so getting the harder consonants out of his mouth just won't happen. She, of course, fell in love with his big blue eyes, and said that since his cleft surgery is scheduled for next month, we should wait until after that to start speech. They would treat him a different way if we started now, so it doesn't make sense to do one thing for two months only to switch it up on him. I agreed, so I will get in touch with her when he's cleared to start speech after his surgery. Or I'll call and let her know that the surgery has been moved because they need to do another one on his head.
We met Jaxson's new OT with Help Me Grow today. She's awesome, and I think she's going to do great with Jax. It was funny, she made a comment before she left to her counterpart about how she was right, that we had everything under control and we did the things we're supposed to do. I got a kick out of that. Of course we are! We want nothing but the best for our baby, and I can't understand a parent not wanting that. I'm sure some parents have a hard time making time to do exercises and things with their kids, but man, I would sure make time to give my child every opportunity to learn and grow. Anyway, I shared a video (posted below) with them, and they think it's a good idea that we're going to see Neurology. Meaning, they saw something that didn't look quite right and they don't think it's a sensory issue. So it could be seizure related, or it could be some other neurological issue. Either way, October can't come fast enough.
This was the first time Jaxson did this while sitting in his bouncer. Normally, he's on the floor playing when it happens, but not this time. Which means the situation is changing, which means it can keep changing. The thing with this shaking that concerns me is that it opens up a plethora of new diagnoses. Disorders and syndromes I have researched for the last year have to be re-researched to include the potential for seizures, or seizure-like symptoms. It's just so frustrating that we have to wait until October to get into the Neurology department. And now I'm even more anxious to see what his CT scans say next month. Is it that his brain is out of room because he has a flat head, or his is brain not growing fast enough? Will they be able to see any abnormalities in his brain with the CT, or will Neurology want a PET scan? Is he going to need a fifth surgery? Will they find something that indicates there could be future surgeries?
I can play this game all day long.
But I won't.
What I will do, though, is hug my baby until he squirms, kiss his face until he pushes me away, play with him and do his exercises so he can continue to develop and grow, and, most of all, I will love him with every ounce of my being. Mom's always tell you that you love your kids equally, and it's taken some time for me to allow myself to get to this point, but I am overwhelmed with how true that is. I didn't think there would be enough room in my heart to love another child as much as I love Jeffrey, but baby Jax has wiggle-wormed his way into a snug cubby in my heart and refuses to move. I don't think I allowed myself to bond with him initially because I was so scared that he wasn't going to make it. But the more and more he grows and overcomes, the more I believe that no matter what they eventually diagnose him with, he will be just fine. He's surrounded by people who love and adore him. He has parents who will fight to the death for him. He has brothers who will do anything do protect him. And he has the support of hundreds of people who are pulling for him to keep doing what he's doing.
Sometimes life hands you lemons. In our case, a truckload. You can either be a sour-puss and piddle your life away, or you can use those lemons to make lemonade and hope that you touch someone who needs it. I have more good days than bad days anymore, but I truly hope that I am helping someone with the words I put on the screen. The last year (I can't believe it will be a year soon!) has been a true up and down roller coaster. But you know what? I still have a job, I still have a roof over my head (barely), I have two beautiful children who love each other and their parents, and most of all, my marriage is not only intact, but stronger than ever. We may not deal with things in the exact way we should, but everything gets dealt with at some point.
I am truly blessed to have such an amazing family, to have supportive friends, and an employer that's willing to work with me. I'm so thankful every day that I have people I can lean on, people that will tell me I need to take better care of myself until I actually do it. People that will just listen and not try to compare a situation in their lives to mine. People that will take five minutes just to say, "Hey, I'm thinking about you," and not get angry when I don't respond right away. In spite of everything, or maybe it's because of everything, I have never been happier in my life than I am right now.
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
