I never thought I would be able to say this, but Peter is consistently using full sentences to express himself! He still has the communication skills of a much younger child but he is using complete sentences to tell us things. For example, he is coming up to me and saying, “Mommy, I want to play the Wii please.” Of course, if I don’t respond immediately, he’ll say the same thing over and over again and gets more intense each time he repeats himself.
The other day, my daughter was being her usual pokey self. We were trying to get everyone in the car to go out to lunch and where we were going was one of Peter’s favorite places. Gabrielle kept delaying, hoping to ride with her grandmother after church and Peter finally had enough of it and yelled, “Gabrielle, get in the car!”
I keep joking that one day, maybe when he’s twenty, he and I will be able to carry on a complete conversation that requires extended back and forth between both parties in the conversation–not just me doing my regular running commentary.
Also, it was pointed out to me today that I haven’t posted anything since August! My apologies. I did extensive work on the website trying to convert it from a Blogspot.com blog to a WordPress.com blog but didn’t post anything in the process of doing all that housekeeping. And, apparently, the kinks aren’t all worked out because I have trouble accessing this blog from work. I tend to work on my writing there before I’m on the clock. (I work part time in at a small private college as well as the library at a related private K-12 school–ahh, books and quiet– two things I rarely get at the same time at home.) I can access my politics blog but it’s a WordPress.org blog and I had to do much more work to get it up and running the way it looks. That’s the eventual goal with this one–to convert it to a WordPress.org blog.
Now, for my update on Peter’s synostosis. Peter scared us several weeks ago. He started complaining about headaches but I chalked it up to allergies, a cold, etc. He complained to his teachers, the bus driver–everyone, it seems, but me. However, one night, we were in the car waiting on my daughter to finish taekwondo class and Peter jumped up out of his seat, repeatedly beat his head with his hands and yelled, “Mommy, make it stop!” I made an appointment to see Dr. Mary Tucker, an ophthalmologist we see with the Medical College of Virginia/Virginia Commonwealth University. Dr. Tucker saw him and checked for swelling in the optic nerve which is a sign of intracranial pressure (ICP). She thought she detected something but another doctor she called in said he thought Peter’s optic nerves were fine. Dr. Tucker recommended that Peter see his neurosurgeon, Dr. Gary Tye, also with MCV/VCU. Dr. Tye’s office ordered a CT scan which looked normal but normal does not mean that there is no ICP. We met with Dr. Tye who recommended that we keep an eye on Peter and continue to watch for signs of intracranial pressure. If Peter was experiencing headaches from ICP, the headaches would get worse, not better. So we’ve been watching but Peter seems to have gotten over whatever was causing the problem. We’ve not seen any more evidence of headaches but we haven’t ruled out the possibility of ICP. Peter requires “more” of a stimuli to feel it so we’re still not sure if ICP isn’t the culprit and that he’s getting use to any headaches he’s experiencing. For now, we watch and wait.
My miracle child is Nathan. When he was diagnosed, my husband and I considered his condition the worse of the two boys. Nathan didn’t walk and didn’t talk–at twenty-four months! He finally started walking at twenty-six months and eventually started talking but he took– what felt like– forever. We honestly thought that Peter would remain the more advanced. Nathan surprised us all and has done phenomenally well. I have to remind myself just how bad off he was by going back and reading his diagnosis paperwork and his therapy reports. Today, he plays and uses his imagination constantly, he’s reading really well and telling stories and he’s a science nut! He came home in kindergarten telling me about the different states of matter. He will still do it if he sees an ice cube or steam. He still hand flaps or over focuses and gets in trouble in school for his lack-of-transitioning skills; he gets a bee in his bonnet and doesn’t want to stop what he’s doing. His teacher has been great, she’s been working on redirecting him and getting him to recognize that moving on from one activity to another can be a good thing.
Nathan still has speech issues as well which causes problems with his ability to hear sounds he needs to learn in phonics. His ear just doesn’t hear the nuances in sound and language the rest of us hear.
All I can say is that it is a journey and privilege. I love my kids and each day they teach me something new or make me laugh. I’m truly blessed.