This might be a bit of a long post since its been so long since my last post. I promise to try harder to keep this updated a little better.
About a week after my last post I woke up to Jaxon playing in his crib. He then fell right back asleep and I thought it was a little odd but hey whatever. When I finally heard him up again, he was staring at the wall with his head and eyes turned to the left. He wouldn't respond to my voice and I couldn't even move his head. I new something was wrong, and then he started to cough and gag so I sat on the floor with him until it stopped maybe 10sec. His hands and feet had small tremors. I had a feeling he was having a seizure but it wasn't real obvious. I got dressed threw him in the car and rushed him to the ER. Half way there he started having full blown seizures and they didn't stop. Driving 60mph in a school zone is probably bad but we got there with only a few people giving me the finger. At the ER he required an adult dose of meds to get them stopped. We stayed a couple days and after and CT and EEG it showed his hydrocephalus was a little worse and yes he had a seizure. We met with Dr Katz (pediatric neurologist) who decided we needed to see a Neurosurgeon at KU med Dr Grant. Dr Grant has read Jaxon's head ultrasounds and CT's in the past (from the NICU) we just have never actually met him. He decided at this time he didn't want to put a shunt in and to follow up in 3 months with another CT. A shunt would drain the fluid from the brain to another part of the body, keeping the swelling in the ventricles from putting pressure on the brain. This was all really good news. A shunt is something he would have to live with for life, always needs a surgery as he grows and comes with possibility of complications like any other foreign object inserted into the body. Since Jaxon is making progress in most all areas, Dr Grant felt like it may not actually do him any good. In the mean time he is taking an anti-seizure medication.
The above is why I didn't have time to write. It was Dr appointment after Dr appointment. And my little man turned 2 this last month. He had a wonderful Elmo party and enjoyed all his gifts complete with a hokey pokey Elmo doll that sings and dances. He's still a little scared of the power wheel 4 wheeler we got him but I think it will grow on him. No cake yet, but he ate his ice cream.
After his party we took him swimming in Jason's aunt Tina's pool. This boy loves the water. He even sticks his own face in. When you take him out, he just reaches for the water to get back in.
Jaxon's sensory processing ability has been an issue since he was a tiny baby. We have been doing ongoing therapy, with several therapists in the last 2 years. I began taking him to the Capper Foundation about 2 months ago and I wish I had done it sooner. He sees an occupational therapist for feeding and sensory and a speech therapist to learn communication. He is now eating all kinds of baby food puree only right now (mostly fruits) and Cheetos. He actually threw a fit in Walmart yesterday because he saw the bag in the cart and couldn't reach it. He tried and tried, then began grabbing my hand in hopes I would get them out for him. Nope this momma was wearing a white shirt, no Cheetos right now buddy. Oh was he mad at me. I know this sounds like such a small task but if you've seen a child refuse to eat and vomit at the sight and smell of any type of food, you'll understand how excited we are about this. This is the start of getting rid of the tube. It will probably still be a couple years before the tube goes away, progress is really slow but I'm much more comfortable with this program and its progress none the less.
He is still just pulling to stand, but some of his other progress has been amazing. He will carry a toy around in his hand while crawling and uses both hands to pick up toys and use them. He is so fascinated by toys that have spinning parts. According to my grandma he takes after his Grandpa Mullinix, when the toys have wheels he turns them over and spins the wheels. ON EVERYTHING.
And his newest accomplishment is using his sign language. About 5 days ago, during his speech therapy appointment he signed "more". He wanted to play with a remote control car. He is so stubborn. He tried everything to keep from using his signs. He tried using the therapists hands to gesture, my hands, just steal the toy from his therapist and finally after about 5 min he realized we were just waiting him out and asked for more. With everyday its getting better. Today his grandma Tonya said he signed "all done" when he didn't want any more food. I'm very excited. It might be awhile before he talks so this will be a much better way for him to get our attention and express himself. We are also using pictures and voice activated buttons teaching him how to use these things to tell use what he wants. Eventually we would like to move to the ipad and put pictures of his toys, food, and objects on it so he can choose what he wants and it can be taken with us and more easily used when he transitions to pre-school.
Besides growing like a weed and giving mommy a little scare this has been our life for the last 2 months. Jason and I are taking a trip to Yellowstone in 2 weeks. Jaxon will be staying home with the grandma's, and his babysitter during the day. This will be the 1st time since he was born that I haven't seen him at least once everyday. However this is a much needed vacation. I think I need this for him and for me.
