Never knowing what to do

Well Torah has been kind of sick again and I have been debating in my mind weather I should take her in to the ER to be seen by a doctor or not. Last week she was a little dehydrated and was retching and vomiting. She seemed to get better on Monday and besides being cranky and crying at night, she was pretty healthy. Mid-week she started to get congested and developed a small cough which as of this morning was worse (sounds like she is coughing up a lung). She also seemed a bit dehydrated again - so I pushed the fluids today and as of tonight she is doing better. She did do a bit of the retching and vomiting tonight at a party we went to. I am thinking that if she is still the same tomorrow (sunday) or if she gets worse, I will take her into the ER. 

New Address

I want to apologize for changing the address for Torah's Blog page. I was battling between two different e-mail address and I found a way to simplify everything - the down side was to change her Blog page address. I am going to post this everywhere I can so that anyone looking for this info will know where to find the new address for her old Blog page. I am also going to try and copy all of my other entries over to this new address. Just give me time :o)
Thanks again for all the prayers and thoughts for her and us. Oh, and I wanted to share a video I saw on youtube.com

http://www.youtube.com/watch?v=th6Njr-qkq0

I hope you enjoy and are as touched as much as I was.

Winter and Prayer

I appreciate all the thoughts and prayers that we get for her, as well as the comments (they always come when I need them the most). I think that there have been a lot of them lately - because she seemed to have a boost in her will and strength. It just makes me want to cry when I see her actually try to do what we want. I swear that she knows what we are talking about and tries to make herself do what we ask, but maybe her brain is not able to communicate to the rest of her body as it should. 

I am trying to set up her 6 month check up down in Denver - hopefully some time in Nov, Dec, or January. Not really sure if anything exciting or big will happen that visit. I think that they are at a stand still on a real diagnosis for her for now (unless something pops out at them and points them in a different direction).

Winter is coming and I am starting to worry more about her getting sick. It seems like even the common cold can cause her body to make it into something a lot worse. We always worry about pneumonia. Even though she really does not eat by mouth - she still does retch or vomit and that can get into her lungs just as easy as food (if she ate food). This is the second year that we have given her a flu shot - so I am hoping that will help her in that area. 

I do have a prayer request that I am in need of. If by chance Torah was to get sick and we were to go back to Denver, this is what could possibly happen. Torah would get flown to TCH with the flight crew and Jace and I would have to drive down. Unless Bob had his normal days off he would have to stay and work so that we would not be short money. The hospital is really no place for Jace to be staying with me (gets pretty boring - since we have been down there for no less then 14 days at a time). Granny Jo is working now and is not able to take off to come up and watch Jace. So what I am praying for is to meet someone that could help me in times like this. I did have a friend that helped me earlier this year with Jace (and it was a God met need), but we did not seem to fit into her life plans and she is no longer an option. I am visiting some other churches here in Douglas (trying to meet other people) and hoping that I will meet who God wants in my life. So just pray that I do meet someone soon. I also could use a friend to talk to and do things with in addition to the other need.

New Standing Device

We have been able to borrow a unit that helps Torah stand up on her feet - or at least put weight on her lower body. Here is a picture of it. She did not seem to like it at first, but now she seems to get restless on the floor and wants to stand up or sit in her chair. I am glad that she is getting stronger everyday. I thank God for all that he has done.

Stronger Everyday!

Torah is getting stronger and stronger everyday it seems. She is also growing so fast! We are working with her to try and sit up and play with toys - she actually does this very well. We just recently got ahold of a standing unit (a device that will help her stand up and put weight on her legs and feet). The development center is letting us borrow one until we are able to get one of our own. She is only able to stand up in it for 5-10 minutes at a time, but we do that a few times a day. If I remember right, she did not like to be in her stroller that made her sit up in a correct position - but she soon adjusted and now loves to ride in it. I am going to try and start video taping some of her therapy sessions (at least once a month), so that we can see how far she comes along each year. She has a mouth full of teeth and if you dare to stick your finger in her mouth - she will and can bite (she does not like to let go either). Her hair is starting to grow longer and she has lots of curls - I am never sure what exactly to do with her hair because it seems to do what it wants no matter how hard I try to lay it down. O well!!
I will try to get some more pictures on soon. Thanks again for all the prayers and thoughts!

ABR - Need Feedback!

I went to a Parent Training course tonight put on by a couple that has a child with brain injuries. They are with a group called Renewed Hope Foundation and are currently working with a Group called ABR (Advanced Biomechanical Rehabilitation). It has helped their 8 year old son and I think might help Torah in the long run.

Here is the address for the ABR site :

http://www.abrtherapy.com/

If anyone wants to check it out and let me know what you think of it, I could use feed back.
Currently they are based out of Montreal Canada. If you work with ABR you are required to go to the Main site once a year and then one of their other sites (New York, Florida, California, Mexico) 1 to 3 times a year. The Renewed Hope Foundation is trying to get them to set up a site in Casper, Wyoming. All they need is 15 families to say that they would be willing to work with the ABR. The government has even said that if 15+ families sign up - they would be willing to fund some of the expenses that come with working with ABR (traveling, supplies, etc.)
I am going to do my own research - but I think it could help her along with with a lot of other info and helpful tips I picked up tonight. I am going to have my work cut out for me if I do all that they suggest I do to help Torah. I do plan on staying in touch with this couple and seeing how they can help me do more at home to help Torah.
Let me know any thoughts that you might have, I can use any and all support.

Ready for Fall

Well, we have made it though the summer with no medial problems. Still having her sleeping spells, she is even in day 4 of one now. We are increasing her therapy to seeing Bonnie for OT and Pool every week, Chuck for PT twice a month, Janet for OT at home twice a month, and Gail for basic therapy at home every week. I am going to be going to some meetings with other parents and organizations that help kids with multiple diagnosis. I am hoping to meet people to talk to and also more people that can give me information to help Torah as she grows. We went home to Kansas for Labor day weekend and was able to see a lot of our family and friends. I think that Christmas will be our next trip home and we look forward to that. I did measure the kids today and I can not believe how much they have grown. Jace is up to 42 inches and torah is 35 in. The last time that Torah was measured was back in July and she has grown 2 inches since then (talk about a growing spurt).