It's getting hot out here!

Abby and her friends found the cornstarch and decided to make mustaches
I gave Abby a bath and in 45mintues or less this is what she looked liked. If you look close, or not, at her head you will be able to see just how much dirt she is there. Needless to say she had a second bath and got an extra good scrubbing on her head to get all that dirt out.
We went to "Amargosa Day" over the weekend. It was, well, not anything close to Fairfield's "Swim Day". We decided to go to the parade which had maybe five vehicles in it (this includes the 'floats') and it went about one block. As you can see in the pictures there wasn't a crowd watching on. To help you get a feel for what you see in the picture and what kind of town we live in, behind Abby which you cannot see is the school, next to that is the community center/gym which is the only building you can see. Just behind that is the library, a small medical center, the sheriff's office, fire dept, and the cemetery. Behind the vehicle Maxwell is leaning against you have the park with a few baseball fields and that is it. No houses, no stores, no pool, nothing. We live four miles from this spot. Oh yeah, not even a bar, but if you go several miles down the road, make a turn, go several miles more you will find a bar at the VFW. (just a little FYI for anyone who might be worrying, no, we don't go to the bar and don't plan on it. I'm just kind of comparing it to Fairfield which has a lot of bars and about half the amount of people, and they have a longer parade too)

The cool thing though is in the other direction. You go down several miles, make a turn, and there on your left is a huge 'singing' sand dune. We have not been there, we wouldn't make it, our car would get stuck before we even began. But, if you have an ATV you can join everyone else who comes in from around the state to 'have fun'.

It doesn't seem to matter how hot it gets the nights usually cool down pretty nicely. Every evening I want to just sit out on the steps and fell the nice breeze and fresh air after a hot day. The mornings are just as pleasant, although it heats up pretty quickly once the sun is up and busy.

We finally have our swamp cooler fixed, or at least it is giving us the impression that it it so. Today was the first day of coolness in our house, and boy was I glad.

Well, Abby and Maxwell had their first dental appointments yesterday. I have only good and wonderful things to say about their dentist and am pleased to have found such a practice for the kids. I originally planned on using a family dentist but a pediatric dentist was a much better choice and I figured they would be better with the kids and Abby would warm up to them much better there. Abby liked it so much she asked to go again today and she just loves the toothbrush she got. Needless to say though, she will get to go back soon. As it appears it looks like a tooth has been bad from the beginning and is causing problems and will need to be fixed along with the one right next to it. I was worried that perhaps there was something I did wrong or that I didn't help her take better care of her teeth but I was reassured that it was not so. Although she will go in for the not so very fun and good feeling stuff we were told that the stuff they use to numb her or put her in a daze will make it so that she really won't remember what happened. So, she can just keep those good feelings of the dentist that she acquired yesterday and all will be fine.

Of course, there is nothing like getting work done on teeth and finding out what is wrong with your mouth, or someone's mouth. We were informed that Abby will most likely need something done about her jaw before her 6year molars come in because there is simply no room. Although we did not know about the lack of room for extra teeth we did know that Abby inherited the small jaw that some of her relatives have and that is so pronounced in Maxwell.

Maxwell did good at the dentist. His visit was maybe a total of ten minutes, and only one or two of it with his mouth open as they put flouride on his teeth. This we will do every six months since he is failure to thrive and that creates weaker teeth, or something of that nature. He did not warm up to the dentist quite like Abby did. In fact, he gave her an evil look. I"m sure he may have liked her if she didn't touch his mouth, but the only person he will even let come close to his mouth is me and if it is someone else he will scream and defend his mouth like crazy.

We also went to the pediatrician that same day (we try to get as much done when we go to Vegas because it isn't easy to get there often). This is a ped. for the early intervention people. I wasn't quite sure how it would go but it turned out quite well. The Dr. wasn't pleased with Maxwell's little bit of weight loss but is quite convinced that he will not gain weight with supplements until we figure out just what he isn't digesting or metabolizing. She told me to keep doing what I am doing and to hold off on putting the NG tube back in (I told her I would if I needed to) since it just wouldn't make a difference since it isn't calories causing the problem.

The good part of all of this is that she is going to set up an appointment with the metabolic dr., talk to the GI I am going to get, and possibly get me in to see the only geneticist that exists in the state of Nevada. I think the reason I enjoyed the visit with this dr. is that for the first time I felt like someone was really listening to all the things I was saying and not just part. I tried for the last year to do all the things the doctors told me and I even tried to talk myself into thinking that everything I tried was the right thing to do, but I know deep down inside certain things just didn't seem right.

I feel like this doctor (other than my last geneticist) isn't just out to put more calories in him and think that that will solve all the problems, which I heard from many people. As it is now I spend a good portion of the day trying to get more calories in him and working on his feeding.

This is also the first time someone hasn't disregarded what I said about him being constipated. I cannot tell you how many times I have told the doctors that he is constipated and nothing ever done to find out really why and if it is a cause of lack of fluids or lack of intestinal disfunction.

I hope that the metabolic specialist will be able to see something no one has before. Even so, I found a study that is going on in Maryland and from the looks of it Maxwell would apply. Of course, when I called they had already closed for the day so I must wait until Monday, but it could help us get an answer as well.

It would be nice to have an answer. There are days I want to blame myself. Sometimes I wonder if there was something I did or didn't do. These thoughts usually come when I forget that it is something metabolic and not just caloric. There are many moments where I look at his tiny body, all bone, no muscle or fat, but a big smile, and all I want to do is cry or have a miracle beyond his happiness. I went a year without discouragement but beyond that it is hard to fight it coming. Getting discouraged seems too easy to do but then nothing gets done if I do. And as I read in the scriptures the other day I was guided with the words to give me strength if I allow. Most people don't like to hear it but it helped me....Patience.....and then while that is going on my burdens will be made light and they will not seem so heavy. In fact, the only time "my" burden seems heavy is when I am discouraged........

After our visit at the ped I took Sam to the airport. He is in Chicago this weekend at a function put on by the website he writes for. I will pick him up tomorrow and then hope to not make that horrible drive to Las Vegas again until Abby has her dentist thing.