Been posting a lot on Facebook, but thought I should update here as well.
Her first day was a bit rough here at TCH, but day 2 went a little better. As of right now (day 3) we are watching her blood pressure and she currently is getting two iv meds and one other med every 8 hours to help keep her blood pressure high enough. Still very swollen due to all the fluids. Was a little more active this morning, but still really sleepy. The cooling blanket help'd bring her 107 temp down to 101-102. Getting pumped full of antibiotics to help fight the staff infection that was in her blood. A CT was done yesterday to check for any extra fluid or pressure in her brain before they do the lumbar puncture (hopefully doing today) which will check to make sure the infection did not get into her CSF (cerebral spinal fluid) which can happen after doing CPR.
Will also be going to IR to get her G-tube replaced with a GJ-tube so that they can start feeds (this will bypass the stomach and go straight into her intestine).
Still on the ventilator to help breathe, but has been reduced down to only 15% (maybe it will be taken out sometime today or tomorrow). Still in the PICU for now.
Side note: Mom, Dad and two brothers all had a positive Strep test but we also all had that wonderful shot in the butt to help and thankfully are all healthy again.
Thank you so much for all the support and prayers!!
Kelle

Update on Torah: She had a small fever yesterday and I had to suction a few times throughout the day. This mama went to bed around 1am and she was coughing a lot but seem'd to do ok. Woke up at 5am to find her breathing really labor'd. Check her pulse ox and it was in the 30's and 40's. Hook'd her up to some oxygen while I got dress and then took her to the ER. The ER ended up putting in an IO due to not being able to get an IV started. While they waited to see if bagging her would help her oxygen levels, they prepared to intubate her (which was done soon after arriving). While they were intubating her, her hear rate dropped to 20bpm and they began CPR (heart did not stop).
We are currently at TCH in Denver in the PICU. she is still intubated and pretty sedated. She had a fever of 107 - so they have cooling blankets under her to bring down her temp. EEG being done now too to see if there is any seizure activity going on.
Thank you for all the prayers and support, she is a strong lil girl that always keeps me on my toes. Will update as I know more.

So it has been quite awhile since my last post

 and there is no real good excuse besides me being a mom ... Sorry!!

First Day of Kindergarten

Torah has had a lot happen. She has started Kindergarten and loves it. Her teacher's name is Mrs. Soske and her para is Kayla. Everyone seems to know Torah now and loves to see her smile. Torah did have a seizure right before school started and we again was shipped to TCH in Denver. Her seizure meds have gone up in dosage and seem to really have no effect on her or her seizures, but we hoped they were under control. 

Our New Home! 

We have move to a new home and have settled in since June. We went from a 3 bedroom double wide trailer house to a 5+ bedroom home with over 2600 sq ft of room. Going to be working on remodeling the upstairs bathroom for Torah in the next year, but other than Bob building a ramp in the garage there was not much to change to the house. 

Feel free to come see us anytime, we always like to have our friends and family as guest!!

Torah was able to go to the Shriners Hospital in Salt Lake City. We saw an orthopedic doctor there. They also set her up with a new back brace, AFO's (leg braces) and also a new wheelchair. 

We made it home to Kansas for Christmas and survived all our family gatherings. It was so good to see everyone again and spend time with them! On the 26th of December, Torah's brain decided to spice up the holidays with a "status seizure" and we ended up calling 911 to come and get her from my dad's house. I was able to see some old friends and co-workers while we were in the ER, but she was soon shipped out to Wichita to Wesley Medical Center to the PICU and under the same neuro doctor that she saw when she was born. It was good in a way, because this doctor brought up some other ideas of ways to control Torah's seizures since the 3 medications did not seem to be doing the job. So after talking with Torah's neurologist here in Wyoming, we will be getting her set up with VNS Therapy. The procedure will be January 22nd. We are hoping that this will help control her seizures better - it is kind of like a pacemaker for the brain. Maybe after some time we will be able to stop or lower some of the doses of the medication she is on. 

Will try to update again later to let you know how she is doing with the device. If anything, send me a note and remind me!! LOL 

This goes out to all the

 "MIRACLES" 

http://www.globalgenesproject.org/

You can check out other "Hope - It's in my Genes" photos on their FB page

https://www.facebook.com/globalgenesproject?sk=wall

I can not believe that tomorrow, it will have been 5 years since God blessed me and and your father in such a way that changed our lives for the better. You have kept me on my toes and many restless nights, but I would not trade a single day. We love you so much!! Happy Birthday Peanut!!!

Thanking God for his protective hand

2011 was a very uneventful year for little miss Torah. We did not have any big seizures thankfully and also no other medical concerns where she had to be flown to Denver. Besides her hardware removal surgery, it was a very good year. She has been doing great in all of her therapies. Between PT with Chrystal (who also does pool therapy), OT with Jess, Speech with Haley, and Equine Assisted Therapy with Lorrina, I believe that Torah is getting stronger and will maybe one day be able to sit by herself. She still goes to the Development Center 4 days a week for 2.5 hours each day. We are also getting very excited for the 2012-2013 school year when Torah will progress over to the Primary School and start Kindergarten. Crystal is in the process of making sure the school has all the equipment that Torah will need (she is a bit longer than most kids and already has out grown all the equipment that the school owns). I will be calling to set up a weeks stay for Torah at the Shriners in Salt Lake City for them to fit her for a new wheelchair that will support her better for school and also some new braces for her back and legs.

We have found her a new neurologist close to home in Casper. Met with her once before Christmas and I am very happy with how everything went. We might be calling her office already tomorrow to try and get Torah in for an EEG to see if she is having a seizure when she falls into her "spells" where she sleeps for 4-5 days. This new doctor also has told us that we should be able to have Torah come to Casper (which is only 45 miles from home instead of 200) when she has her "status seizures". This was very good news to hear and I just hope and pray that it works out. The decision is now weather or not we take her to the ER here in town where they never know what to do with Torah when she dose have one of these seizures, or do we just take her strait to Casper on our own?? Guess we will make that decision when the time comes.

We did get a new Tomato chair for Torah to use here at home and she loves it. It will also allow us to attach it to a chair where she could sit at a table as well. We are waiting for a tray that goes along with it plus some head phones that she can use with the iPad. I am already making my shopping list for our next order!!

I am in the process of becoming a provider for Torah, were the state will pay me for 4 hours each day to take care of her. This will be a welcome gift and help out so much . . . but it comes with its share of paperwork. Not sure exactly when I start, I still need to watch a video and get a few more things turned in. I have to have two people write letters of recommendations to the company I am going under, so if anyone is up for the task in the next week or two . . . please let me know!!

Sorry it has been so long since my last update, I do what I can and will try to do better!! :)