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!! :)

Torah's 1st Hippotherapy

My new job is working for a gal that is a Physical Therapist. In addition to her every day therapy sessions, she also runs a Non-Profit organization that helps kids with the use of horses. It is call STRENGTHENING GAIT. Torah had her first session on the 29th of August while my dad and sister were here in Wyoming visiting us. The pictures are all thanks to my wonderful sister!!! Thanks again Chrissy!

We were at an outside arena that a land owner is letting Lorrina use. The property was just sold and will be no longer available to her to use as of September, so for the winter she will be using the arena at the State Fair Grounds here in Douglas. It was a beautiful, warm day to be outside and Torah did great on the horses (Prince and Rascal). Sadly in the same area, search crews were out looking for a Dep. Sheriff that was swept away by the river the day before. I was glad that the horses did so well with the helicopters hovering the river not far from where we were working. The Deputy was found on Sunday and our condolences go out to his family!

Torah had a blast and did so well. Her helmet kept falling down in her face, but she did not seem to mind at all. Catey was a great help riding on the horse with Torah (otherwise I might have been up there and that could have been very interesting . . . maybe I can get some lessons!!). We are going to try and keep this up. I am really hoping that it might help her figure out her balance and maybe even help her scoliosis as well.

Below are some of the pictures that Chrissy took.

Rough and busy month

This year just seems to be flying by and I can not believe that it is already July. Torah has been very ornery lately and has kept us busy cleaning up after her. If she is not pulling out her mic-key button, she is opening the medication port and letting everything drain around her in the middle of the night. I am guessing that she is doing this because she might have a stomach ulcer and some pains to go along with it. Two days ago, she started to go into one of her sleeping spells, so I just kept her feeds low and also kept her on oxygen . . . now today, she seems better!!

I am trying to wait for our trip to Denver in September to arrange all of her dr appts at TCH, but that is also pushing the 4 months and their could be a possibility of a seizure before then, but I am going to do my best to try and catch the seizure and maybe use the "seizure action plan" the doctors gave me last time to see if it will hopefully work!

Bob's brother gets married this month, and we are so looking forward to welcoming Heather into our family.

After the wedding, my dad and sister will be coming up to see us for the week. So excited, and we have lots of fun things to do while they are here. It also sounds like, Bob's parents might be coming up the week after too . . . so we will be busy and it will be so good to see everyone.