This Day & Other Updates

Sarah with a scarf that was recently gifted to her by good family friends. 

Breakfast - all set up.

Andy - doing his math assignment for the day.

Stopping their playtime so that mom can shoot a photo. 

Veggies for dinner. 

Homemade pasta sauce using the tomatoes from our garden. 

Getting caught up on some much deserved 'thank you' notes. 

It seems to be never ending. Clean laundry waiting to be picked up and put away...

Playing a made up game using ice and the trampoline. 

I think it is fair to say that we have a lot going on in our family right now. Bob left on Sunday to begin our new life out in New Mexico. His flight from Houston to El Paso was canceled (thank you, United) and he had to sleep in the airport for the night after finding out that all of the local hotels were booked solid. He finally arrived at his destination a good 24 hours after he departed from Cleveland. If we can book a flight for the dog, I think that his next trip back to Ohio will be around Christmas. If we end up having to drive to New Mexico (because of the dog) then he will fly back to Cleveland and make the 26 hour journey with the kids, the dog, and me. I am hoping to join him no later than the second week in October. I would like my boys to finish out their soccer season.

Because of the difficulty in trying to find a good weekend for me to go out and house hunt Bob and I have decided to allow him to pick out our family house. I feel comfortable doing so based on the Internet and other technologies that we have been afforded via the relocation company that will allow me to help him choose albeit from a distance. We are hoping to have something picked out in the next couple of weeks. 

The kids and I are trying to make our lives as simple as possible now that it is just us. We make a good team together, and they all seem to be willing to help me out when I need it. I have some anxiety over whether or not I will be able to sell my current house. We have had several showings in the 10 days it has been on the market, but being on the corner of a busy street seems to be the biggest deterrent in people making an offer. I hope that someone - soon - will like the house enough to overlook the busyness of the street. 

The boys are doing well this soccer season. I am $100 poorer due to a bet I made with Andy about a year and a half ago. He was playing on the defense then, but his kick was getting stronger and stronger, so I told him that if scored a goal I would give him $100. Well, lo and behold he started playing for a new team that following season and his new coach put him at midfield and forward. Because I had not specified a time frame for the bet nor had I specified a position from which he had to score from it was only a matter of time before he scored. And so, two weeks ago from an assist by his brother, Andy scored his very first goal. It was the perfect goal. My two boys working together - one (who has scored many times) helping his brother (who was scoreless) making a dream come true (and making him a bit richer). I cried. It was pretty awesome. 

Miss Sarah is doing well. Dare I say - stable? Her vision never did come back -  that was no surprise - but her ability to handle herself and navigate her surroundings is amazing. I don't know if most people could tell upon first sight that her vision is so poor. I am not sure if her new treatment regime is helping or if the damage was done and this disease just decided to retract on its own. She just finished up her second month of IVIG. Her first treatment last month went terrible as she ended up with the side effects of a migraine headache (like none I have ever seen) and vomiting. After a day at the hospital treating her with fluids and migraine medicine she was good to go. This last treatment went much better in terms of her reaction, but because of some growing pains that the hospital is experiencing it was not a smooth treatment in terms of patient experience. We were one place one day, another place the second day, and back to the hospital for day 3 and 4 of treatment. We have gotten the situation figured out so that the last treatment she will receive in Ohio will go much more smoothly. It has been so nice to be able to settle down without life being one big emergency. We are going on 7 weeks of no relapses which is one of our longer stretches since her diagnosis, and the longest stretch she has had since January of this year. Sarah  had another MRI and also a spinal tap last week. Her MRI came back with awesome results. No lesions on her spine and there are no new lesions on her brain. Those lesions that she did have appear to be healing. The only damage that her MRI showed is on her optic nerve, but again, this is no surprise. It was really nice to get such good news. Her spinal tap went terribly though. She ended up getting poked 4 times in the back in order to retrieve the necessary spinal fluid needed which meant that Sarah was in incredible pain for almost a week. She had a spinal headache and back pain that was so terrible we were in the ER on Saturday. I have only seen her in such pain 1 other time (and that was last month when she had her IVIG migraine.) It was a terrible feeling to see her curled up in a ball sobbing because she hurt so badly. This coming from a child with the pain threshold of a Navy Seal was very hard to bare. Thank goodness she is back to normal again. Her spinal fluid came back with no oligoclonal bands - which means that this is definitely not MS (which we knew). Her fluid also lacked the presence of the NMO antibody which is present in 70% of  NMO patients. Her neurologist believes that she is just one of the 30% of people that does not carry this antibody, and is still treating her as a Devic's patient. As for me, I may start nosing around again to see if there is anything else out there that this may be besides NMO. 

One of the things that really has been on my mind is a conversation that I had last week with one of Sarah's nurses. She was talking about how busy the hospital has been and how many autoimmune diseases she is seeing. How they seem to be everywhere. I would agree. It seems like every time I turn around someone I know is being diagnosed with a different autoimmune disease. Crohns, Diabetes, MS, NMO, etc...what could be causing all of these diseases? The only things that we all have in common is the air we breathe, the food we eat, and the water we drink. There is something that is making most of us sick. My first inclination is to think that it is our food that is causing these issues, but obviously, I have no clue if that is correct. Now that life has stabilized a bit I am going to start focus again on doing some research on food. Something isn't right, and I would like to find out what it is so that I can give my kids, all of them, a fighting chance as living decent lives without disease. I have been in this place before, but instead of going all crazy and changing our diet I want to look into a few things first. I have a tendancy to dive head first into things instead of taking my timne to make the right choices based on sound logic and reasoning - I don't want to do that this time. I have  started making my days more meal centered though. That is one thing I have come back to recently. This means setting the table for breakfast, lunch, and dinner. It means really thinking about what I am preparing, and trying to make most of it myself. It means slowing down and trying to be as organized as possible to enjoy what I have made. Mostly, it means being conscious of what I am offering my children as a source of nourishment. I am far from perfect, but I am trying. For me, that alone 80% of my battle. 

So, that is that.