Back from TCH

We made it to Denver and back safely (thank GOD!!!) My vehicle's transmission is not quite running right and I was just not sure what or if something was going to happen, but we were able to drive over 400 miles without any problems.
Wednesday we only had one appointment (made for a non-stressful day). We met up with Torah's neurologist and I had a lot of questions for her about the seizure that happened at the end of August. Funny how she did not know about it and was surprised when I told her. I had told the floor doctors to notify her (since we were there on a Monday and Tuesday - I figured that she would come up to see us and check out Torah), but the staff never did notify her and she was not happy about that. Anyway, she said that even though they checked for some type of an infection that may have cause the fever and seizure and everything came back normal - that does not mean that it could not have been due to an infection. She told me that when they run the test, there is only 6 different things that they look for and none of those were present. So we still do not have any answers, but she did give me a prescription for Diastat (a rectal gel that I inject) just in case Torah was to have a seizure at home. I showed her the video of Torah while she was at our local ER and she agreed that she was having a seizure and asked how long it lasted . . . maybe 30-45 minutes?? I told her that Torah was doing that for 2 or more hours (she was not happy about that either). This is one doctor I wish was closer to us and could keep a closer eye on Torah, but we will have to settle with every 6 months for now. She was pretty persistent that Torah also get the Flu shot, but was going to leave it up to the SCC doctor.
After we were done with neurology, I proceeded to go to the Walgreens pharmacy to fill a few scripts (kinda funny that I never knew this pharmacy was in the hospital after all the visits that we have made there). Then I went back to Health Information to get copies of all of Torah's records for our files. I was figuring on paying over 200 dollars for everything, but thankfully it only ended up costing around 60 and I was even able to get CD's of her radiology tests. These will come in handy if we are ever to see a new doctor.
Thursday we had two doctor visits to make. First one was to see Torah's SCC (special care clinic) doctor and we were the first patient of the day. After getting all of Torah's vitals (39in tall, 33.5 lbs, and head cir 20.6 in) we headed back to see the doctor. Right off the bat she expressed her concern about the size of Torah's head circumference. It has increased quite a bit in the last year while the rest of her body size (height and weight) have not been so significant. So she wants us to monitor this with Torah's PCP and if anything changes or becomes worse (like having more seizures) we will get her scheduled to have another brain MRI before our next visit in April 2010. She also went into depth about Torah getting the regular flu shot but also more importantly the 'swine flu' shot as well. She told me that they have had a lot of small kids with major neurological problems (like Torah has) get the 'swine flu' and end up dying from it because it was not caught in time. So if any person in this house gets a cough with a fever, we are suppose to go get tested for the 'swine flu' as soon as we can. I am always the person to not make a big deal out of small symptoms, so this will be interesting if something does come up. We also met with the dietitian and are trying a new higher calorie formula (or supplement drink) so that Torah does not have to be getting fed all day. I am still trying to figure out how and when to give her the food plus all the water that she needs as well, but hopefully after a week or so it will be where it needs to be.
Our last appointment was with Ortho/Rehab. They did another hip xray which came back looking normal or good, and also a spine xray which showed her spine has only had an increase of 2 degrees since June. They did set me up with a guy that measured Torah's mid-section to start making a Thoracic Lumbar Sacral Orthosis (TLSO) brace to help correct and keep her Scoliosis from getting worse (currently at 47 degrees). It will take about 4 weeks to make and get insurance to pay for and we will probably have to go back to the Denver area to pick it up and get her fitted for it correctly. This will also be something that we have to return to either Denver or Cheyenne, so that Greg (the Orthotist) can always custom fit it for Torah. I'm a little worried about when and where we will have to go since there will be a new addition to our family here in the next 8 weeks.
I feel like I am running a lot of this together - so I hope that it all makes since. Torah's reflux has been acting up today and she has pretty much slept the day away. I am guessing that having her adenoids taken out is not going to help her reflux any, so lets just hope that she does not suffer the whole winter from sinus infections.