We're Back!

We're back from Vegas. We got back late Sunday night after a safe ride home. The get-a-way was nice, yet busy and too short. It was good to have a little distraction from all the recent stuff that has crept into our lives as of late. We enjoyed Christmas morning with Darin's parents in St. George after spending the night with them and then again that afternoon in Vegas with my whole family...something that has not happened in long time. We had debated going on to Vegas the night we arrived in St. George, but I was so tired and I knew Darin was too. However, I was worried the girls would drive Grandpa crazy. They were already acting hyper after the drive and more as the night when on. I knew Darin's dad wanted to visit with us. He hasn't seen the girls in a very long time, and his face lit up as soon as we walked in the door. He has been in very poor health and doesn't get to do much more than wake up, walk to his chair, watch t.v., nap, eat, nap some more, watch t.v., eat, and go back to bed. The only exercise he gets anymore is walking from the bed to his chair in the front room and back to his bed again. he does have PT's that come work with him trying to get the blood that settles in his feet to circulate back up through his body, but his poor heart just can't seem to pump it through. Instead, he has to deal with swollen, purple feet and ankles.

Anyhoo, we decided to stay and it was a good thing we did. Oakley threw up just as we decided to set up camp there. She was on the bed we had just made up with clean sheets. Poor Grandma! We kept her washin' machine busy that night. Even after all the craziness was over and we finally calmed down, they were glad we stayed the night. The girls had a great time watching Shirley Temple and Laurel and Hardy black-n-white movies with Grandpa.

We then went on to Vegas to celebrate more, since my sibs don't get up and at it early on Christmas morn, we had plenty of time to get there for the festivities at 2:30 p.m. (ha! ha!) Our gifts were a little different this year. We decided to go practical and got each other things for emergency preparedness. (72-hour kit supplies, water storage jugs, headlamps, mylar sleeping bags, tarps, 100-hour candles, buckets, mess kits, small cooking pans, burners for cooking, etc.) But I have to say the best present gifted was the Flushable Loo given to my parents by my brother Mike. We had so much fun acting out the "usage" of such a contraption and the girls had fun each trying out the "throne". My mother was thrilled. She also got a portable shower kit, as well. Now my non-happy camper can go camping in style and luxury with all the necessities of life. And...if the end of the world as we know it comes upon us, she will have a Flushable Loo to help her through! (I wish I had a photo of my dad sitting on the portable toilet.) Heidi, if you have it...will you send it to me? It was a grand ol' time had by all.

Then, Friday morning, we were reminded of what we were trying to escape from. Dr. Adams, Dakota's doc, called us and wanted us to bring her in that day. We were in Vegas. He wanted her to see a neurologist and ophthalmologist to make sure there are no more tumors growing, particularly on her optical nerves. We don't want our little one going blind, just yet. However, that is always going to be a possibility with this disease, as well as deafness if they grow on her auditory nerves. When he found out we were out of town, he was a little concerned, mostly because he himself was going to be out of the office the following week and he wants to get the tumors surgically removed a.s.a.p. Yet, he comforted us by saying that it's o.k. if we wait. Her situation is not life-threatening (yet), and although we need to get the tumors out to make her more comfortable, he said he'd see us on Monday, January 5th. I'm not sure if the specialists will be there at that appointment or not, but soon she'll meet with them. So, the nurse telling us that the lumps would be treated with steroids on not taken out, was false information. Welcome to the health care industry.

We read up a little more on Neurofibromatosis (Type I) - a.k.a. Von Recklinghausen's Disease (on the internet) and I shouldn't have done that. Although we are not sure what Type of NF Dakota has (there are a few to choose from), I think her symptoms match more closely to Type I.) My wheels are turning extra hard now that I know more about how this disease could affect my baby (mental retardation, seizures, hydrocephalus.) She's got a whole lotta' life ahead of her to live with this. The doc told us that NF hits 1 in every 4,000 people (we read 1 in 3,000 on the web). It is the most common inherited disease caused by a single gene. That seems not so rare to me. So, I hope there is a lot of research being done for NF. There are still a lot of questions about this disease that can't be answered. And there is no cure. However, I think if tumors are caught soon enough, a person's vision, hearing, and life can be spared. (Cross your fingers extra hard for that one). Again, we'll know more on Monday and subsequent days after meeting with the "big wigs". For now, I will turn my internet off and not go looking for more things to worry about...and enjoy the rest of the holidays. I finally got my "Christmas" cards put together to be sent off tomorrow. So, with that and my yucky tongue from licking 170 envelopes, I am off to bed to dream about the Flushable Loo and other other things that make me smile!