Thursday, December 25, 2008

It's 2am and I can't sleep.

I could have blissfully fallen into slumber at about 11:30pm tonight but that was just when Santa needed to get going. John and I headed back up to the main floor to begin our Christmas layout. I still needed to clean up the remnants from our Christmas Eve feast with Shauna, Ty and her kids. I am so tickled even now just thinking about our "program" tonight. I had a script in hand and a playlist ready to go on my iPod but really, what can you possibly get done with kids ranging from 10 years to 3 months? Basically we summarized the nativity and had lots of participation from the boys. Oliver and Jack were trying to outdo each other with their knowledge of the nativity. "Jesus was born in a barn and he got some gold from a wise old man". Jack's words. Oliver said, "they just kept knocking and there just wasn't room anywhere at any of the places." Harrison offered, "I am a sheep and I was in the stable wondering; who are these people in my house?"

We also played the "right" "left" game where we have wrapped presents and pass them to the right or the left whenever each word is mentioned during a silly story. It is hilarious trying to play that with Elliott who is 2. He would latch onto a present and refuse to pass it either direction. Jack got very worked up at his cousin and finally refused to sit next to him. So Tyrone finally sat between his two boys and Jack moved over next to John. I was the narrator so I started cutting out many of the rights and lefts and basically read a story that made no sense. It didn't matter, the kids loved it and all ended up with a present they wanted. I got a "limited edition" Star Wars picture. You might think that Tyrone brought that. Nope. It came from my stash and I was hoping that Tyrone would end up with it and take it home with him. It got it free when I bought the boys' Star Wars Wii game I had pre-ordered from Blockbuster. I put it away immediately because we don't hang that kind of crap on my walls in my house. Well, we didn't before. Harrison asked me later if he could have it. I gave in and gave it to him. Hopefully it will be forgotten in the Christmas pandemonium later.

When Shauna's family first arrived the 4 boy cousins all begin playing with cars as fast as they could. They were running around a lot and basically being hoodlums. When it was time to settle down and eat, Jack declared he was hot and could he please take off his shirt. Let me just tell you about Jack. The kid cannot leave shirts on when he is home (or in the car). Even when it's freezing cold and we're all huddled up in blankets, Jack is running around bare chested. I find his discarded shirts all over the house. So tonight when I caved in and let him take off his shirt, his cousin Oliver decided he needed to do the same and on it went. Finally 3 out of 4 boy cousins had their shirts off.

Our dear friends, the Gardners are still waiting and praying for their daughter Brooke to recover from the car accident that their 3 girls were in. Brooke is 10 years old and is one of the girls in my "Activity Days" group (similar to Girl Scouts). She is a sweet girl who is so spiritual beyond her years. She is so smart and reads books well above her age range. She devours historical novels and refers to herself as "a language arts geek". She's a joy to have around and I miss her. Her family is all staying together at The Children's Hospital tonight waiting and praying for Brooke to wake up. Its been 19 days since the accident. Brooke is still in intensive care. Please pray for her and her dear family. We love them so much and wish them a Christmas Miracle!

Friday, December 19, 2008

Doors doors everywhere there's doors....

John doesn't have to work today so he and packed up Becca Boo and headed to Shauna's house to do some home improvement projects. It has been a door installation day. Shauna's door into the house from the garage had seen better days so she bought a new door for it. Her front door is a solid door with a non-functioning peep hole so she decided to replace it also with a beautiful new door with an oval plate of glass. It lets in a lot of light into her living room. It's freezing cold today so when John began by removing the garage door it made the house into an icebox. Brrr....the kids headed upstairs away from the drafty open doorway. Shauna, John and I toughed it out. It took almost three hours to demo the existing door frame and to replace it.
When that was done John headed to the front door hoping that the new door's hinges would match the old so he could just do a door swap. No such luck so it was demo part deux.

Ty just got home from work a little bit ago so that he and Shauna could take the family to Oliver's preschool for his Christmas open house. It is much quieter here now that they are gone. Now I'll I can hear is banging, the air compressor and sweet sweet silence. Becca Boo is asleep in Shauna's guest room. Bliss.

Even though Shauna and Ty have lived here for over a year now, it still blows my mind sometimes that we all live so close to one another. For years Shauna and I spoke almost daily during her commute to work. I would go to New Jersey to see her at least once a year and she would try to make it here also. Sometimes we have to pinch ourselves that we actually pulled it off; we live not only in the same state, not only in the same town, but within 5 minutes of each other. I am one happy girl. By the way, we still talk on the phone daily usually more than once a day.

I can't believe that Christmas is less than a week away. I had the decorations up before Thanksgiving so you'd think that I'd be ready for it to be here but I'm not. I think the Gardner family's accident really changed up everything for so many people. Time has felt so weird and it feels like the season should be paused until we have good news about Brooke. I just don't feel the celebratory sparkle I normally feel. I'm just so worried about their family and what the future may hold.

My boys are starting to question Santa Claus' existence. I've done my best to make them believe but I don't know if they actually do. Jack especially is very suspicious. He keeps asking me question after question about the practicality of Santa's whereabouts and how he actually pulls it all off. It's so sad to feel that the innocence of their fantasy beliefs may be crumbling. I'm not ready to let it go.

Thursday, December 18, 2008

Yellow Pages for Loveland, Colorado

Yellow Pages for Loveland, Colorado

My pissy day

Yesterday sucked. It has been colder than cold which may seem expected to many of you who don't really understand the true Colorado weather in the northern Colorado foothills. Seriously, it is sunny 300+ days a year here and often very mild throughout the winter. We get some snow (though not nearly as much as people envision or expect) but it usually melts away inn a day or two. This last snowstorm we had has left the white stuff as frozen as the day it arrived. On one hand we haven't had to deal with the slushy, muddy, sloppy mess but nonetheless to keep the white stuff frozen has cost the temperatures to be freakin freezing cold!

I have been hunkered down in my home for a few days with just the token "driving the kids" to and fro. I'm getting cabin fever and am ready for it to warm up. Of course I could bundle up the Beckster and go somewhere but Becca's crappy sleeping habits have made that tough. Becca is going through some kind of crazy sleep pattern where she goes to sleep at night then wakes up for often hours at a time. Then she is of course all tuckered out in the morning when I'm supposed to be getting her dressed and ready for preschool. Now most of you who are parents know the rule, "never wake a sleeping baby". Well that rule goes for 3 year old Autistic girls too. If you do, you'll pay in spades. So instead, we work around her schedule.

Her new doctor discovered some interesting results from one of her many labs that the doctors at The Children's Hospital ordered. Now I should say that although they ordered these tests I never actually heard anything back from them except, "her results are normal". However, when I brought Becca's "book" of medical records to her new doctor, he poured over them and actually learned quite a lot from them. One thing he noticed immediately is that Becca's body is storing melatonin and for some reason isn't able to access it. He was baffled why her Doctor at Children's wouldn't have spoken to us about this. There were a few other discoveries to be found in her records as well. It was enlightening and dismaying at the same time. Dismaying that the thousands of dollars worth of tests that were ordered by a doctor were pretty much useless to us until we gave them to our new doctor. Enlightening because although her new doctor didn't have immediate answers, he saw her results as clues and made notes to himself so he could do the proper research as to what this all meant.

Now that I'm talking about Becca's doctor, I guess I should go all out. I attended this Autism Support Group with one of Becca's paras from her school. It was all very divine how it all worked out. Lori (her para) gave me a flyer about the meeting the morning of and asked if I wanted to go with her. I jumped on board and we went to hear a lecture by a BioMedical doctor, Dr. Roger Billica. He is a DAN (Defeat Autism Now) doctor and was awe inspiring with his information and his great success stories with Autistic patients. He didn't claim that there was a cure for Autism but rather cures that differed for each individual person. What works for one person, doesn't for another etc.... I was so impressed and couldn't wait for the next morning to come around to make an appointment for Becca. He was pretty booked so her appointment wasn't for months away. We knew that the first protocol he would recommend would be a GFCF diet (gluten-free, casein-free) so we prepared ourselves by learning about it before the appointment.

Dr. Billica recommends getting very specific genetic testing done on his patients so that he can really and truly see what is going on inside their bodies. We were prepared so we jumped on board and took all the home testing kits home. There are 4 different tests we are doing. One requires that we collect Becca's urine for 24 hours and then send it overnight to the lab. Another requires the first morning urine. One was a blood test and involved us pricking her finger and squeezing the blood out onto a card. The last test was testing for heavy metals so we had to cut some of her hair and send it in. We've successfully done the blood and hair but the urine tests have been a complete failure. We were familiar with the urine collection bags that they use on kids who aren't potty trained. The Children's Hospital did one of those too. The lab tech placed one on her and put the diaper back on. We waited and waited hours for her to pee only for the pee to completely bypass the bag and go right into the diaper. Fortunately they only needed a tiny bit so there was just enough drops in the bag to use.

When we left Dr. Billica's office armed with 20 collection bags we thought it wouldn't be too tough. Wrong! The bags do not stay put and the diaper just absorbs the liquid gold known as pee. We bought vinyl pants to put on Becca over the bag and thought surely we could just use a medicine syringe to suck up the pee that made it out of the bag. Instead most of the pee bypassed the bag, the pants and ran down her leg. It has been so frustrating and very messy. We finally told Dr. Billica's office that we just couldn't do it. So it seems she'll need to go to a lab and have a panel of blood work done instead. So we need to wait until we can afford it and will have to head back to Children's since they are the only lab that has a clue how to do labs on a child. You may be wondering about insurance. Well, they are done paying for Becca's testing. They also don't cover Becca's Doctor visits with Dr. Billica. Their excuse is that it is redundant. Yes we are appealing. We are also in the middle of an appeal with the insurance over Becca's therapy as well.

Meanwhile Dr. Billica won't have the results of the blood and hair for awhile yet so we wait. When he gets them back he will do an individualized supplement and health plan for Becca. We are rubbing Gabba cream on her daily and are slowly transitioning to a GFCF diet. We met with his nutritionist and she suggested we transition slowly after the holidays (wise advice since this time of year is rough to get something like that going).

I totally got of track of what this posting was even going to be about. I was supposed to complaining. Well, I don't really have much to complain about. I really have a blessed life and feel pretty stupid for letting myself get in a funk. After all, I have some friends who are going through hell right now so what do I have to complain about? Their 3 daughters were in a very serious car accident 12 days ago. Their middle daughter is still in the ICU down in Children's Hospital with a BOLT, an AVD and PICC line. Her brain is so swollen that they haven't been able to take her off of sedation to have her wake up and do serious testing to find out the extent of her damage. She's only 10 years old and it has been extremely rough. Her oldest sister was also hurt very seriously but is doing much better. Her younger sister is better physically but was extremely traumatized by the accident (she was the only one conscious during the accident).

So I guess the fact that I am feeling a little down is pretty pathetic. I need to suck it up and be grateful for all my many blessings. I have a lot of them after all.