I know many have been praying, so I should probably update and fill everyone in.
Here I expected this week to be somewhat defining and we are basically status quo...our "normal".
Opthamalogist-He said structurally everything looks fine. The words he used were she has delayed developmental maturation. Basically, she's a little behind and we will check her again in a few months. Side note that kind of irritated me with him... When I was explaining that she has seizures and we know they begin in her occipital lobe..., he said, "well how do you know that?" oh, I just thought that would sound good and I'd pull that out of the sky for today. Duh! I should have given him the play by play of our journey thus far.. "well, when her breathing got funny and we drove 4 hours to the ER...."
PT-same work there. They continue to mostly be working to restore her digestive system at the current. Lymphatic and adrenal some too. All benefit her circulatory as well. They noticed marked improvement of her turning her head back and forth and overall movement.
Gluten seminar-after the information we are acquiring, Shawn and I have agreed that it would be stupid of us and I would even go as far as to say that we would be disobedient if we didn't go off gluten. And it could be a rabbit trail, but it will still be beneficial. Gluten is a modified protein affecting everyone with so many varied manifestations. It's not just a GI thing. I'm sure I'll bring all my crusade in this arena to a post at some point. God has already revealed a ton to me about the body being a temple.
Neurologist-no news is good news, I guess. Based on her holding her ground pretty good, our plan is to stay the course for a while. He would like to get an image in about 2 months. For now, we will back one drug down to once a day, and possibly work to eliminate another one in a few weeks. The genetic test was not back yet, so still waiting on that. He said the seizures have had an adverse effect developmentally, and really in terms of development, we kind of look at her as a preemie, consistently a little behind the norm.
Dr. Mom-She has become increasingly more verbal and more smiley/cooing. Also, have seen less "episodes" The complexity of our bodies is absolutely amazing! At some point I'll get more specific about the details of it all, but my theory is her systems have been compromised, whether it be misalignment, gluten sensitivity, or more, and the combination has created undo stress on her body, which puts her in a protective state, causing seizures and restricting "normal" development.
In a nutshell, over the last few days we haven't learned much, except she is developmentally delayed. I could have told anyone that without driving all over the state. Oh well! My sister pointed out that at least we know the most she could be behind is 4 months and we know she is ahead of a newborn, so we are doing good! :)
We tossed around the idea of going on to my mom's house in MO this weekend, but with finances tight and overall tiredness, we are on our way back to Greeneville.
The road ahead....
Tuesday we go to a massage therapist that specializes in pediatrics and has done a lot of work with children with special needs, specifically seizures. She is an individual I originally sought out for craniosacral and she just returned from vacation. She also has a Master's in Early Childhood and Family Services. So I think she will be an excellent player to have on our team!
TEIS (Tennessee Early Intervention System) will be coming out to the house on Wednesday to talk with us and provide some information about the process with them. I do know that since she has a seizure disorder, she automatically qualifies for the services.
Neurology follow up in 2 months, but in contact between now and then.
Vision follow-up in 3 months.
In the meantime, lots of hugs and kisses are in order!