My Commitment

I'm a little nervous about writing this on here, because it will let you in to a very personal part of my life that makes me very uncomfortable.  However, I am not happy about it  right now and haven't been for some time.  It is no secret that I am overweight and seriously need to loose some pounds!  For a while now I have been trying to do just that.  It has been a struggle, to say the least.  Last year I did Weight Watchers for 9 months and lost 10 pounds.  Seriously frustrating!  Then almost by accident, while looking for ways to improve Bryce's nutrition through his g-tube, I came across the idea of a whole, raw food diet.  As I read more about it, I loved the concept of it and I began to put the ideas into practice.  I haven't totally changed the way I cook and eat, it's a process, but I began drinking green smoothies every day, I cut out refined and artificial sugars and white flour from my baking, 3 of the kids and I committed to one year without candy or soda (which has gone surprisingly well so far).  The first week of doing this was fantastic.  My cravings decreased almost immediately.   I lost 3 pounds, I had more energy than I have had in a long time, my mood was amazingly more stable, I have been able to handle things just a bit better.  

However, this month has been hard.  I continue to drink my smoothies because I didn't for a few days and seriously noticed a huge difference in the way I felt and my ability to function.  I try hard to eat like I should, and get exercise in as much as I can, but my weight has not budged.

Stress, lack of sleep, and time continue to be my enemies.  As some of you may know, due to Bryce and Annalise's condition they do not sleep well.  A couple of our other children are dealing with some pretty nasty issues of their own right now and have also had some sleep trouble.  I am the one who is up with them during the night.  Because of this, I very rarely sleep more than an hour or two at a time throughout the night.  So when I hear that lack of sleep and stress can add to weight gain, I get a bit discouraged...because that is my life right now and I don't see that changing anytime soon!  

I finally decided that as long as I have the energy to do what I need to do, I would not care what the scale said.  I have long ago given up really caring about what other people think about the way I look.  If I get a shower, brush my teeth, and have clean clothes on, I feel I am doing well.  I don't say that in a bad way, it's just that spending time and money on the way I look is seriously low on my importance scale right now.  Too many other things have moved ahead of that.

However, Bryce is getting heavier.  I need to be able to carry and move my children.  I know that my weight is not good for me, and I have recently found out that I am pre-diabetic.  So, something has to be done!  The beginning of April, I began keeping track of my weight and really trying to eat as I should.  Today I weigh the most I have ever weighed in my life.  UGH!  Very discouraging!  So tomorrow I begin something that I have never done before.  Along with 9 other people, I am doing a 21 day body reset...a sort of  gentle cleanse.  I am a little nervous because it is going to be difficult to fit this into our crazy schedule and I am really afraid that it is going to be just like everything else I have done lately, but I am so hopeful that it will rid my body of whatever is causing it to hold onto the extra weight and help me overcome my sugar addiction and all my other issues around food.  After the 21 days, I plan to continue with my new found way of eating, something that is much more in line with the Word of Wisdom than my previous way of eating was.  Something I really feel good about.  I am also going to be running another 5K this June in Utah with my sisters.

I seriously hope I make it through the next 3 weeks and that it brings on a very positive change!

William's Own Mystery

Ahhh, where do I begin.  I'm not sure if I have mentioned it here before or not, but a little less than a year ago, William began complaining about seeing blackness at various times.  He said that sometimes, especially if he was tired or just getting up from sitting down, everything would go black for a few seconds and then he would be fine.  Since he had recently gotten new glasses, I took him back in and asked the eye doctor if he knew of anything that could be causing this.  He said no, and made us feel kind of dumb for asking saying that it happens to everyone when they close their eyes tight for a second and then open them.  So we left and I just told William to let me know if it happened again.  

A few months later, it was still happening occasionally, so I decided to ask his pediatrician about it.  She said it could be from dehydration and just to make sure he was getting enough to drink.  So we did.  I am a huge water pusher anyway...just ask any of my kids, they will tell you!  So, time went on and these blackout episodes continued to happen and seemed to be happening more often.  He would also sometimes have a headache or be a bit dizzy when it happened.  William was in the doctor's office again for something (can't remember what) and so I asked about it again.  She said that it could be low blood pressure or an early sign of childhood migraines. She said to keep pushing the water and add more salt to his diet and let her know if they get worse.  

Then about two months ago he had one that really scared him.   He had used the bathroom, washed his hands, and turned to go toward the door.  He looked at the handle and started to reach out for it when everything around the handle began to go black and then it went totally black and he could not see a thing.  He said that he felt very dizzy and that he wanted to hit himself to try and make it stop, but he could not make his body move and he could not call out.  That one lasted longer than any of the others.  When he came out, he was about in tears from fear as he told me about it.  He then sat down on the couch because he was very tired.  

At  his well check just a couple of weeks after that, I asked the doctor about it again, because it just seemed like it was happening too often and lasting longer.  It was also happening at more random times.  She said she wasn't sure why it was happening, but maybe we should just have him checked out by our Neurologist to be sure.  So, I came home and emailed him, telling him briefly what was going on. This was just a few days before we were leaving for D.C. so he said to get in touch with him once we got back from D.C. and he would see if he thought William needed to be seen.  Bryce and Annalise have an appointment next week with Dr. N, so I figured I would just talk to him at that time.  William has had a few episodes since then.

That leads us to yesterday.   While I was out working with Bryce and one of his physical therapists with his power chair, I got a call from the principal at William's school.  He said that William had passed out on the way in from P.E.  He said that he had just gotten a little scraped up from the fall, but that he felt that I needed to have William checked out because of the fainting spell.  I couldn't get a hold of anyone close by so luckily the PT offered to stay with the kids while I ran down to get William.  I then called my mom who came over to stay with them while I took William in to the Pediatrician.  

William's war wounds.  Luckily just a few scrapes on the face.  It could have been much worse.

William was still pretty out of it when I picked him up.  He said that he had two of the blackout things happen while they were in P.E. and then while walking back, he had one that just didn't end.  He said that he tried to walk and felt himself run into the wall and begin to fall, but couldn't do anything to stop it.  The next thing he knew, he woke up with his face on a bunch of rocks and a bunch of people over him yelling his name.  

We saw a different doctor than normal.  He said that there is a whole list of reasons why a person could pass out.  It could just be from dehydration and heat exposure, but since William has been having these "blackout" episodes for a while, he wanted to do some tests just to be sure we aren't missing anything.  He also said that we should still talk to our Neurologist.  So, we headed out to get some blood work done.  

Then we stopped for lunch.  I joked with William that if he wanted some time out with me, he could just ask for it...he didn't have to pass out!  :)

At one point during lunch, he looked a bit "off"  and I asked him if he was okay.  He seemed a little out of it and said that he had that same feeling coming again.  He said he felt very hot, like his insides were burning up and he felt dizzy.  He lied down on the bench for a few minutes and pretty soon felt better.  We finished lunch and hurried over the the hospital for his EKG.

William getting all hooked up.  

When I told William that I wanted to take his picture, the lady doing the test asked William if it was okay.  He said yes.  She then said that she asks the kids that and if they say no, she tells the parents that pictures aren't allowed in this area.  "You have to stand up for the kids", she said.  I like her!

After the EKG, we headed home.  Luckily it was pizza night, so we stopped at Costco and picked up a pizza for dinner.  I was still full from lunch, so I passed on the pizza.  William ate it up.  That boy is skinny, but he sure can eat!

William had one more blackout episode last night so I kept him home today just to keep an eye on him.  He has been fine all day.  The doctor's office called us today with the results of the tests he had done and said that everything looked fine.  So I guess for now, we will just make sure he gets plenty to drink, lots of electrolytes, plenty of salt, talk to the neurologist, and wait to see what happens.  

Never, never a dull moment!

First Time in Handcuffs!

Last Wednesday John and I left for Washington D.C. with Bryce and Annalise.  We were heading off to visit with Dr. Vanderver and others who work with her to get a second opinion on whether or not she believes Bryce and Annalise do indeed have Aicardi-Goutieres syndrome, and if so, what things we need to do/watch for as they grow.  The flight into Baltimore was pretty uneventful.  Although the children did not sleep a wink on the entire 5 hour flight, they did a great job on the plane.  The excitement came just a few minutes after leaving the airport.

We had called ahead and rented a van which had room and tie downs for the two wheelchairs.  It was very helpful that the van was brought to us right at the curb near the baggage claim.  Annalise fell asleep in her chair just seconds after we left the airport.  As we headed out of Baltimore on the Baltimore-Washington Parkway, we soon noticed a police car off to the left of the road.  We saw it pull out and into the left lane.  Soon it moved over into the right lane just a bit behind us.  John was going the speed limit, so he wasn't worried about it, but the police officer continued to follow us.

Then in a bit of a blur, the adventure began!  The lights and sirens went on and we pulled over to the side of  the road.   At the same time, two other police cars pulled up behind us and one came driving in from the front of us (yes, going against the traffic) and blocked us in.  We found out later that they had stopped traffic behind us and that these officers we were dealing with were members of the United States Park Police.  I looked in my side view mirror and saw a police officer, with his gun drawn coming toward my door.  One was also coming toward John on his side.  They began yelling for us to show our hands...which we did!  They then got to our doors, had us get out of the car and turn around.  They then handcuffed us while asking if we had any weapons on us or in the car, and led us to the back of the van where they told us to lean on the front of the police car.

They asked us what we were doing with that van.  With my heart beating out of my chest, I explained that we had just come in from Arizona to take our handicap children to the hospital there and that we had rented the van from a company called Wheelchair Getaways.  They opened the back door of the van and I'm sure that once they saw Bryce and Annalise sitting there in their wheelchairs, they knew there had been a mistake.  They explained to us that the van had been reported stolen and assured us that they would get everything taken care of shortly.

It ended up that the van we had rented, had been reported stolen back in January.  The company had recovered it on their own and had somehow not let the police know that it was no longer a stolen vehicle.  We were only handuffed for about 5 minutes, but the whole incident was a bit nerve racking.  At one point while we were still in handcuffs, the officer that was in with Bryce and Annalise came back and asked if there was anything like a stuffed animal or something that we use to calm him down.  I thought that maybe he was really upset.  Being separated from them, even for minutes, was the hardest part for me!  I knew we hadn't done anything wrong, but the thought of being away from our little ones for even a short time was terrible.

Anyway, as I was kind of stumbling telling them that we didn't really have anything since he isn't able to hold anything, John kind of shrugged his shoulders and said, "his mom.  She calms him down."  By that time they pretty much knew there was a mistake somewhere, so they let me go up to him although they told me to just poke my head in and not let him see the handcuffs.  So I did and after that the officer who had put the cuffs on me, took them off and he and all of the officers apologized for the misunderstanding.  Bryce and Annalise were both fine.  Annalise was playing with a badge that one of the officers had given her and Bryce seemed to be enjoying the lights from the police cars.  It was good to be able to touch them again!

They continued to apologize as we sat and talked with them while they tried to get the car "out of the system" so that we could continue to use it.  They did say that it would take about a half an hour for it to get completely cleared and that we were free to go, but that we may be pulled over again for the same thing.  Sergeant Giannini gave us his card and told us that if we were stopped again, to show it to the police officer and explain what had happened.

Well, we left and sure enough about 10 minutes up the road a police car pulled behind us and soon the lights went on.  Luckily this time it was just one officer and he took the card, made a phone call and soon let us on our way.

As we drove away, John said to me," I've never been in handcuffs before!"  Me either!  I guess there is a first time for everything...and hopefully a last for this type of adventure.  It's one I would rather not repeat!