The Adventures of Natalie and Wesley: 9 months, 8 days later

Which one doesn't belong in this basket?

Good Evening,

It has been a few weeks since my last post and I wanted to update you all with what has been new in my short life. First I will start out with the new things I've learned how to do. I am crawling and sitting up on my own. I can clap my hands together quite well. I am starting to figure out how this voice thing works and am saying, "da, da, da, da .. " quite a bit now. I have been learning sign language for almost three months now and am pretty good at recognizing some signs Mommy and Daddy do now. When prompted verbally or with the sign I am really starting to catch on. My favorite one my parents do is "Where is Daddy?" and then I look for my Daddy.

I am attending my second session of Kindermusic now which is hard to explain, but we meet once a week and play with different toys and music and learn new songs. I always have a good time watching the other kids and playing with the new toys. I am starting to stand up by holding onto things, but I am obviously still a little wobbly on my toes. I received a new sandbox recently from Dad's friend Chuck and even though they have not put sand in it yet, it is a lot of fun. The sandbox is in the shape of a big red dog and I like to sit in there and play with my little beach balls.

From a medical perspective things are still a bit up in the air. My weight has been a problem, but I feel I am making great progress at getting that in order. I went in a few weeks ago and weighed 13lbs 6ozs. The Doctor really wasn't impressed and said I needed some more work on it. My Mom took me back in a week later and I was up to 14lbs 11ozs. The Doctor still doesn't seem impressed, but I think 1lb 5ozs in a week is good progress. It has been a couple weeks since I went in for a weight check, but Dad ordered me a scale and it should be here next week so we can check more often. Also next Tuesday I go in for my nine month checkup so I'm sure I will still be moving up on the weight.

As far as the neurologist goes, I went back yesterday for a follow up. The medicine had been bumped up two times and none of us had seen any real change. Mom and Dad were not ready to leave this appointment until they could show one of the specialists what exactly I was doing. We met with with CPNP and after placing me in my Bumbo for a minute she was able to see what I was doing. She was pretty sure what we were seeing was not seizures because of some of the symptoms I was not showing like she could move my feet (they were not locked like someone having a seizure) and my eyes were not focused off into space and I was still dis tractable. This was sort a plus, but they still don't know what is wrong and with the abnormal EEG they still want to do the MRI and now they want a 24 hour video EEG. The CPNP still did not want to take me off the medicine until after the MRI and EEG since I could still be having a seizure in the future and it is not easy to just stop the medicine. The video EEG is done in the hospital during 24 hour period and the equipment is still strapped on my head (which I hated last time). My parents and I are to try and carry on a normal day in the hospital room while the Doctor monitors the results. My head size was marked in the 2nd percentile, which was not that strange to me since everything about me is low on the chart.

Next Thursday I go in to get the MRI. My parents are a bit worried since I will have to be put under and an IV stuck in my arm to insert the dye. It will start around noon, so if any of you think of it we could certainly use your prayers.

I am still pretty much a happy baby and have lots of fun time around the house with Mom during the day. Mom still takes me places even though I still have my little spells when we travel, but she limits them to short trips unless I nap on the road. My Mom has made my situation better by just learning to cope with it and not placing me in the devices that cause my spells and I do quite well most of the time. Our hope and prayer is that the MRI won't show any problems and I'll just out grow this over time.

Much Love,

Natalie