Made it through another month

Okay, so it is not the end of the month yet - but close enough. Torah is doing really well. We just saw her development doctor in Casper on Tuesday. Torah weighs in at 21 lb 3 oz and is still 31 inches long. She is really trying to hold her head up a lot now and when ever you put her on the floor on her back, if you come back later she has rolled over. I think she likes rolling over because she is always trying to get onto her belly. I am currently trying to give her some foods by mouth - but she does not seem to be too interested yet, but I will stick with it and hopefully one day she will realize that she needs to start eating by mouth. We have even started working with a sippy cup since she does not like bottles anymore. Lets just say that between teaching Torah how to eat and also trying to potty train Jace . . . mama is a little stressed out. Bob and I are also in the market for another place to live. Hopefully in the next month or so we will have found something and can start making the arrangements to move (again!).
Myself and the kids will be heading for Kansas the evening of the 18th of June (after we are done with all of Torah's appointments in Denver at The Children's Hospital). We will be in Oklahoma for a couple days but I plan on sticking around for part of the next week (since Bob is working anyway) and that will give me some time to hopefully see everyone.
Thanks again for all your thoughts and prayers for Torah. I appreciate all the comments that have been made, they really help me along sometimes when I need that extra boost.

Growing so fast

We have found out that our insurance approved a specail bath chair and stroller for her. The picture you see is her new bath chair that I have yet to use for an actual bath. It works so much better for a seat for her to sit in and be able to look around (also useful for feeding her now that she can start eating again by mouth). It can bend in about any direction you need it to - and that makes it work well for what we need. I am sure that it will be a bath chair soon enough. We will be taking another trip to Denver in June to get her new stroller that will give her the support she needs. At that time we will also be seeing an Opthamologist, Neurologist, and her Special Care Clinic doctor (all in one day none the less). I am hoping that it will be another productive visit for us and get us closer to figuring out what exactly we are dealing with and how to prepare ourselves for the next year or so.
Torah caught the RSV bug a few weeks back and luckily only got a bad cough from it. Her doctor did admit her the hospital for overnight observation on the 24th of March. She really was not sick at that time, the reason Mom was so concerned is because she was running a high fever for more than two days. When we first saw the doctor - she did not think there was anything really wrong with Torah (possible teething), but after she got the test results back - the doctor was just about as surprised as I was when she discovered the RSV. This was probably the 15th time the RSV test has been done on Torah and it always came up negative - but God must have had a reason. Torah is doing much better now and is much more happy and active then I have ever seen her. She has gotten to the point that she loves to rollover from her back to her stomach and is now trying to figure out how to get form her stomach to her back. I work with her a lot on trying to sit up, she love to sit and she can hold her head up a lot better (not perfect - but better). Torah does not have any balance right now so she is not any closer to sitting by herself - but she still has come along way. She now weighs 20lb 5oz (probably more by now), and is 31 inches long. Her weight is in the 95th percentile of her age group at 14 months (amazing since she was 6 weeks early).

A new and different road

I have been thinking of a different way to get info out to everyone about Torah and what is happening to her. I do alot on my facebook page - but I realize that not everyone is on facebook. So this is my way of trying to include all our friends and family that has internet access. It might take me awhile to get all the information on here, but give me time! Anyone should be able to see this site - so if I miss sending it to someone, feel free to forward it on. Most recently, we took a trip to Denver to a specialist at The Childrens Hospital. Her name is Dr. Ellen Elias and she specializes in development and genetics. She explained alot to us about all the past tests that have been done and as she took all the information about Torah, she said that she has her work cut out for her now that she needs to find out what syndrome or dissorder Torah has. Dr. Elias pulled up Torah's MRI that was done back in September 07' and showed us what was really going on. I am going to try and see if she can send me a picture of the MRI of Torah's brain and also the radiology report (only because alot was said and my brain is not big enough to hold all the information given). The big part that is compicating things right now is her Corpus Callosum. Dr. Elias told us that it is completely missing. After getting on the computer and doing a little bit of research - I found that it is called "agenesis of the corpus callosum".

Here is a site that you can go to to read more about ACC - http://en.wikipedia.org/wiki/Agenesis_of_the_corpus_callosum

The site will go over diagnosis, cause, signs, symptoms, syndomes and conditions, treatment, prognosis, and special cases. There is alot of other things going on in Torah's brian that I need to do more research on - but I will post things as I find them.