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).

Good News - but back to scratch!!

We have a new puppy in our family now named Barli. Torah and Barli do not know what to think of each other yet - I am hoping that they will grow to like each other and protect each other.
We have had an EEG done on Torah to check for any new seizure activity and the neurologist have decided that she is not having any kind of new seizures. This was good news, but now we are kind of back to scratch on trying to figure out what is making Torah sick and sleepy all the time. The EEG did say that she is at an increased risk to have seizures - but since she did not have one during the test - the neurologist really can not say that she is having seizures.
About every other weekend she gets hit with something that wipes her out and she will sleep for a few days ( I am starting to call her Lulu when she does this because she is a totally different person - Lulu is what we called here when she was inside me). We have at least one doctor appointment each month from here till the end of the year (some in Casper and some in Denver). One day maybe they will figure out what is actually going on, but until that day - we will keep enjoying her and her happy laughs.
She is really doing a lot better with her head strength and she loves to stand up on her feet (with support). She has had 3 more teeth pop through (giving her a total of 10 now).

Finally an Update

I know that I am a little behind on getting this update onto this blog, but hey, I am finally able to sit down for more than 5 minutes to type it all out. We did make it to Denver last month for all of Torah's check-ups and other appointments. We started with the cardiologist and that appointment was just to make sure that Torah did not have a heart murmur or any other defect. Torah was given a clean bill of a healthy heart and we were told that we should never have to visit another cardiologist again (Good News). Then we went on to see the Rehab specialist (like a physical therapy doctor). She was very nice and did not have anything new for us - so that was a quick visit. The eye doctor was our next stop and I was very impressed with the staff and the resident doctor that saw us. They did not find anything wrong with her eyes, said she was a little far sided and had a small stigmatism - but that normal for small children her age. On Day number 2 - we started off seeing the Neurologist. They were impressed with how far Torah had come since January and said that it is normal to keep children on the anti-seizure medication for up to two years (so Torah will be taking the Keppra until she is at least 3 years old). They also did an x-ray of her spine to use as a baseline. They said that she show a significant dextroscoliotic curvature of the spine and they wanted an x-ray to compare things to down the road. Our last appointment was with our development doctor. We were hoping that she was going to have a syndrome or diagnosis for what Torah's condition is . . . but in all her research, she was not able to connect everything to one specific diagnosis. So as of now all that we can really call it is CNS (central nervous system) disgenisis - meaning abnormal growth of the brain. The doctor was happy with Torah's progress and other than trying to get Torah's constipation under control - we are just proceeding with everything just the same. We will be going back Thursday, July 17th for a EEG to make sure that Torah is not having any further seizure activity and then we will also go back to see the development doctor in September for a follow up appointment.

Other updates about Torah:
Height - 32 inches
Weight - 23 pounds (+/-)
Teeth - 2 (almost 4) on bottom and 5 on top
Able to hold up head pretty good
Likes to stand on her feet
Still has no balance - but is able to sit up with help
Rolls from back to stomach and can pick head up occasionally
The doctor said that she is not ready to be eating by mouth yet - but she does get to taste food

Oh, and we did make it to our new home in Douglas Wyoming. It is a 3 bedroom house - so everyone has there own room and we can still make it possible to keep visitors at the house too. Our next trip back to Kansas might not be till December - but feel free to call or e-mail anytime.