The local paper did a story on my daughter.  Here is a link to the article.

http://peninsulaclarion.com/news/2011-12-03/the-strength-to-grow

Halloween without Food

Halloween has come and gone.  For Bailey the fun is all in the trick or treating.  This is not her first candy free halloween but it is her first food free halloween.  So, what is the point in halloween without being able to eat the candy?  How does a child still enjoy trick or treating without the treats?

As a parent, I have learned to become very creative.  Halloween is actually one of the easier holidays to work around and our work around is mutually beneficial.  Bailey dresses up just like all of the other kids.  She also goes door to door and to the trunk or treats in the area.  However, after Bailey gets all the candy together, she counts it up and Tony and I buy the candy from her.  We get more candy then either one of us needs and she gets to go to the store and buy a couple of her favorite pet shops.  She a dentist dream child and it's a win-win.

The main thing I have learned from this is that my daughter is quite the little shark.  You cannot even begin to imagine how much she tries to charge for candy.  And don't let her know what you really like because she will raise the price on your favorites. lol

Gotta love her!!!!

The Death of Zoey

Yes, that's right.  We had another death.  This time the hamster died.  Now I realize that hamsters, gerbils, mice and rats do not live long but I think we set a record.  We got poor Zoey as a baby right after we moved into this house.  That would have been three months ago.  Zoey was barely weaned when we got her and she was so small and so cute.

We had a nice little cage I picked up from a garage sale a couple of summers ago and I held onto it until we moved into a bigger house.  As soon as we moved we headed for the pet store.

Well, a couple of days ago I noticed that Zoey just wasn't acting quite right.  She never played on her ball and she just kind of laid around.  I spent quite a bit of time holding her and I gave Bailey a heads up on Sunday that she was dying.  She looked dehydrated and he tail was all wet.  Turns out she had a hamster disease called wet tail.  Go figure.

So, Monday morning just before Bailey left for band, I looked in the cage and poor Zoey was laying there lifeless.  I pulled Tony to the side and explained the situation and we made a plan for him to tell her right after band as they headed for the pet store.

I know, we are so horrible.  When one animal dies we just replace it with another.  I have to wonder what type of message that is giving her.  I am sure hoping that when Grandma passes, Bailey is not expecting us to go get another one.

At any rate,  Bailey and Tony came home with Xavier.  He is a cute little guy.  Has a bit of a pension for biting though but I am sure he will get better with a little bit of attention.  Zoey was sitting in a box waiting for Bailey to come home.  She help her for a while and she is back in the box.  Tomorrow I am going to look for a good spot in the yard to bury her.

I was a little surprised by Coty though.  He never really paid much attention to Zoey but he was definitely a bit stressed and depressed by her passing.  I didn't really expect that at all.....   

I Saw a Star

The most amazing thing happened tonight.... I saw a star.  Not like a celebrity star but the kind that you see in the night sky.  "Big deal," you say.  "What is so great about that?"  Well it can be a big deal if you live in Alaska.

It took me a couple years to figure it out.  We went to visit family in Oregon and we were driving towards Medford when I looked into the sky and saw hundreds of stars.  I was so surprised it took me a few minutes to register it.  You see here in Alaska it is light all summer long.  Now I am not talking sun high in the sky light, but never really dark only dusky light.  By mid June you can watch the sunset after midnight. And even though the sun sets, it just barely dips below the horizon so it never gets dark enough to see stars.

In the dark of winter the sun comes up around 11:00 am  it gets dark by 2 in the afternoon.  But even though it is "dark," the snow covers everything and casts the world in an eerie white color.  Take pictures in winter and you would swear you had black and white film.  With all the snow,  I can see the shed in the back yard even at midnight.  So, it never is a true dark and you still can't see any stars.  And on a clear night is definitely around 20 below and I am tucked away in my warm and cozy home so still no stars.  

That leaves a small window between September and October to view the stars in the sky.  I imagine the same window exists between March and April but I will have to try to remember and look.

So, as I said, tonight the most amazing thing happened... I saw a star in the sky.  It was only one star.  And it probably was not even a star, it was most likely Venus.  But that is okay.  It shone so big and bright.  Star light, star bright, first star I see tonight......

The Blessing in my Life

Sometimes I think people see me coming and the run the other direction.  They think, "Oh no.  Not her.  How depressing!"  I know when I talk about how things are going it does not paint a rosy picture.  But I am not depressed or sad.

Granted, yes, my mother does have terminal cancer.  She lives with me and I can tell you that as an adult it is very difficult to live with your parent.  It is not easy to watch her as she struggles everyday.  I am far less than patient with her huge memory lapses and combine that with the mood swings of what I know must be impending menopause and life can be a bit of a roller coaster.  And at the same time, I would not change it for anything in the world.  I love my Mom despite the fact that she causes me to bang my head in to the wall on a daily basis.  If it wasn't for her cancer she would still live 2700 miles away and I would not have the opportunity to spend this time with her.  My children would barely even know her.  Also after moving here my mom started going to church, accepted Christ and was baptized.  I think cancer even at it's worse is worth eternity worshipping at the feet of Jesus.

My son has autism.  Autism does not define him, he defines it.  It is not easy living in the house with an autistic child, but I have learned so much more from him than I would have if he had been a neuro-typical child.  I have learned the eating, sleeping, and mating habits of nearly every animal on the planet.  I fully understand the importance of the opposable thumb.  I have learned the different stages of decomposition and how it affects different birds and animals.  And I have learned that love does not always come in the form of a hug and the words "I love you Mom."  Sometimes love comes in the gift of a freshly skinned squirrel.  Sometimes it is not moving away and flinching at the touch of your hand.  Love can be having a strand of your hair twirled for hours until you feel like it is going to be pulled out of your head.  It is your child watching for your reaction when you watch a movie and copying it just to try to fit in.  Love is not always spoken, it fits in the silence.

Love also comes in the fit of violence.  It is that moment when his body is tensed and shaking from the heavy stress and anxiety and he finally leans against me and sobs.  It is sitting a safe distance away as he rocks and rocks trying to decompress, knowing not to touch him, not to speak, but just to sit and watch.  It is felt during a seizure as you sit next to your child, helpless and all you can do is wait it out.   It is sitting on the floor for hours at a time, spinning a top or what ever the toy of the day is, just trying to break through so that he looks up and notices you.  It is one more visit to the ER and holding him down while the doctor stitches him up.  It is doctors and specialist, therapies, and alternative treatments.  It is practically putting your house in hock trying to find an answer. Love is not always pretty.  It is not always wrapped in wonderful.  It is bare and raw and sometimes it hurts so bad you do not know how you will make it through another day.  I believe that only the parent of an autistic child fully understands that type of love.  And they would not change it for the world.   Coty is amazingly smart.  He is artistically talented.  He takes amazing photos and he is quite musical.  He has an incredible sense of humor.  And he is a very handsome kid.  He challenges me the most but he is so worth it.


Then there is Bailey.  Always my healthy child, nuero-typical in every way and then one day everything gets turned upside down.  Four years of a mystery illness finally diagnosed.  Allergic to nearly all food, tube fed formula though a tube.  And it is okay.  Formula meets her every need.  Her formula is like manna from heaven.  Every vitamin and mineral she needs is right there for her.  Her disease is incurable but it is not terminal.  It can and will be managed.  She is smart and funny.  When she smiles she lights up a room.  From her I have truly learned what it means to be brave.  No matter what, she moves forward.  She meets each challenge head on.  Not only does she survive but she thrives.  She rarely complains.  She serves others and puts the needs of others first.  She does not talk down other people like girls her age often do.  She is not judgmental and she will befriend anyone.  She is innocence at it's best.  I worry about her only in the sense that I worry the world will begin to corrupt her.  Despite the pain she has suffered, she has kept that sweet innocence about her.  God has blessed this child and I imagine he has something very special planned for her.


I am fortunate also to have an amazing husband.  He works hard so that I can now stay home and take care of the family.  When he is home, if I need a break, he has dropped his own plans to allow me to get time out.  He is loving and supportive.  He is my soul mate and my strength.  He was the first person I ever truly felt safe with.  The first person I could be myself with.  He has seen me at my best and he has seen me at my worst and somehow he still loves me.  I have always said that I doubt there are very many men that could put up with me.  Thankfully, he can.


No, I am not sad or depressed.  I have a wonderful life.  What many people see as problems, I see as blessings.  God never promised us life would be easy.  He did say to cast our burdens on Him and He would make our yoke light.  My life is what it is.  These are the daily things that strengthen me and make me a better person.  They teach me how to love in a way that many people will never experience.  They teach me patience and perseverance.  The teach me to turn my face to my Father and to trust in Him.  I know to treasure the moments as they come and to never take a moment for granted.  Life is too short, love fully.

My New Little Chef

My children have never shown an interest in cooking.  On a rare occasion Bailey would ask for us to make something just to wander off five minutes later leaving me in the kitchen on my own.  She just never had time.  When we learned that she could no longer eat, I thought maybe it was a blessing that she had no interest in the kitchen.  I even remember a conversation we had.  She wondered what she would do when she grew up and got married if she still could not eat.  How would she feed her husband and kids.  I told her if her husband was worthy of her, he could cook for himself and the kids.  That settles that.

But lately the oddest thing has happened.  Now that Bailey can not eat, she constantly wants to cook.  She make quesadillas for her brother and his girlfriend.  She helps cook dinner and she serves the food, actually putting the food on the plates for each member of the family that is home for dinner.  Tomorrow she is baking a cake for her Dad's birthday.  Tonight she made chocolate chip cookies.  And all the while she cannot even try a bite.  Not a lick or a taste.  I just don't get it.

If I could not eat, I would not step foot near the kitchen.  I would probably flee the house to escape the smell of food.  And yet, she sticks herself right in the thick of it.  She so much wants to be a part of what she can no longer have.....  

This is how Bailey eats.  There is an IV pole that sits beside her bed.  A bag of formula hangs from the pole and a pump sends formula through a tube that runs from her abdomen into her stomach.  The formula flows in at 150 ml an hour.  That works out to about 12 oz of formula per hour.  The IV pole travels.  During the day she may drag it to the homeschool area to feed while she works or to the tv room while she watches cartoons.  Two days a week we stuff the formula bag and the pump into a backpack and she wears the pump to her classroom in the local elementary school.  As she sits beside her peers, her feed flows giving her the needed nutrients to help her make it through the day.  It takes two hours to get through a meal.  She tried to drink the formula in the beginning but it hurts her throat so the feeding tube was necessary.  

And yet, she steps into the kitchen and bakes cookies.  She moves room to room in the house delivering the cookies that she longs to taste but cannot.  She cooks perfectly seasoned chicken and cuts it up, placing it in tortillas, then adding cheese and frying so that her brother can savor the flavor of a quesadilla.  She serves bowls of what used to be her favorite soup, taking in the aroma, but not able to take in the rest.  These are the same foods that when eaten would cause her so much pain she would not even be able to stand up straight.  She amazes me in so many ways.   

The Wild Side of Alaska

This is an older post that I had posted on a different site.  I figured it might go well here....

We had the most beautiful ride home from Anchorage today. We started around the Turnagain Arm and stopped off at Beluga Point. Surprisingly, we did not see any beluga, but the view was incredible.   Just as we were pulling back onto the highway, we noticed two dall sheep on a ledge above us. It was a momma and her baby.

We then headed back down the freeway towards home. We noticed quite a few cars pulled off at Bird Point so we stopped and found a pod of belugas. They were swimming close to shore and it was fun to see their white backs rolling on top of the water. We must of sat there for a good half an hour watching them.

We pulled out and headed back for home. From there it was pretty quiet until just past the mouth of the Russian River. As we headed around the bend, past the two ponds, we spotted a brownie and her two cubs. They had been eating fish on the far bank of the river. At one point a bird flew over her head and she stood straight up on her back legs. She was so big. Bears are so amazing and majestic. I was definitely glad she was on the far side of the river. Not far behind her there was an eagle nesting in a tree.

We spent about 20 minutes watching her when we noticed the water of the river turn a beautiful deep red color. On closer inspection we could see the river churning with sockeye salmon. They just bubbled to the surface, there were so many of them!

We spent another 10 to 15 minutes and then figured we had better head home. I had stepped back over the guardrail and then stopped to answer a question from some tourist. Suddenly a semi came around the corner. I grabbed the guardrail with both hands and held on as the semi passed just inches behind me. I can honestly say that I hope to never be that close to a moving semi again.

We all loaded back into the car and started the trek back home. About 20 miles down the road we saw a moose on the side of the road. Another 10 miles produced 4 more moose. Mom also thought she may have seen another bear just outside of Sterling but she wasn't sure.

It is on days like this that I feel so blessed to live in Alaska. What a glorious day!

Life Without Food part 2

Have you ever noticed how every event in life centers around food?  Birthdays, holidays, family get togethers.....it all ends up around the table.  So having a child that cannot eat can be a real challenge.  Okay, the challenge is not mine, but hers.  And sometimes the real challenge lies with the host. Case in point....

We went to a barbecue the other day.  They had hot dogs, hamburgers, chips and snacks,  the whole enchilada.  First the offer Bailey Cheetos.  She kindly explains to them that she is not able to eat.  She is allergic to food.  She lifts her shirt and shows them her feeding tube.  We explain we have formula for her in the car.  "Well,"  they say, "can you have a hot dog?  No, well what about a hamburger?"  We explain she is allergic to meat.  Next they pull out the potato salad.  "Well surely you are able to have potato salad?" they say. (Never mind the bacon they just added to it.  But is bacon really a meat?)  Bailey tells them again that she cannot eat by mouth and she is allergic to pretty much all the ingredients in the potato salad.  So, then they offer her nuts.  Once again she explains that she really can't eat food due to allergies and that she takes her food through her g tube.

So, what happens next.  They offer to blend a hot dog and she can eat it through her tube.  You just have to love it....

And believe it or not, this is not an isolated conversation.  We go through this at nearly all new events we attend.  Heck, my mom lives with us and she is constantly asking if Bailey can eat this or that.  It is so unnatural to meet an individual that cannot eat, that we just cannot wrap our minds around it.  Food is a source of life as well as entertainment.  How can it be possible that the very thing that is meant to sustain us can be poison to her.  It is just so amazingly mind boggling.

You know your Alaskan when....

I wish I knew who to give credit to for this but I don't....

Great Land of Alaska

You Might Be an Alaskan if...

1. You have ever been asked if you use Canadian/Russian currency.
2. You have ever been asked if you live in an igloo.
3. Power outages don't seem to bother you.
4. You laugh at people who wear coats when the temperature drops to 50°F.
5. You refer to Lower-48ers as foreigners.
6. You know what a Lower-48er is.
7. Spam/pilot bread/tang are part of your regular diet.
8. You cannot imagine life without duct tape.
9. It takes only a 15-minute drive to "get away from it all".
10. The town you live in is "away from it all".
11. You don't understand what's so exciting about seeing a moose wandering through the middle of town.
12. A snowmachine/ATV is a necessity, not a luxury.
13. A snowmachine is something you ride, not something that makes snow.
14. Dressing up means putting on your cleanest flannel shirt.
15. You need 4-wheel drive all year long - for the snow and ice during the winter, and the potholes during summer.
16. Six to eight inches of snow is "a little bit".
17. It drives you crazy when people pronounce the "l" in salmon or the "p" inptarmigan.
18. It drives you crazy when people don't pronounce both k's in Knik.
19. It drives you crazy when people pronounce Valdez "val-dehz" instead of "val-DEEZ".
20. Anything above freezing is T-shirt weather.
21. Going outside doesn't necessarily involve the outdoors.
22. You've ever had to put on long johns, sorrels, snow pants, T-shirt, button-up flannel, light jacket, heavy coat, scarf, face mask, thick hat, and thick gloves just to walk a few blocks to the store.
23. You think Lower-48ers are wimps for closing schools, businesses, etc., when it snows six inches.
24. The only way to get to the town you live in is by airplane, weather permitting.
25. Texas seems awfully small and crowded.
26. You've had to expain that you don't live on an island in the middle of the Pacific Ocean (some maps show Alaska as an inset by Hawai'i).
27. You need to drive 150 miles to get to a town that is only 50 miles away.
28. You think the Rocky Mountains are wimpy.
29. You don't even think of the Appalachian Mountains as mountains.
30. An SUV is a necessity, not some sort of status symbol.
31. You've ever told a Lower-48er that you live in an igloo, wrestle bears, wear animal skins, and eat whale blubber just to see if they believe you.
32. ...and they did.
33. You don't wash your car anymore, because the dirt is the only thing holding it together.
34. You wash your car, and five minutes later it's as dirty as it was before.
35. You have ever hit a pothole and totaled your car.
36. "There was a moose blocking my driveway" is an acceptable reason for being late for work or school.
37. Akutaq is occasionally part of your school lunch.
38. You know what akutaq is...
39. ...and you know how to make it.
40. When you hear Lower-48ers complaining about the harshness of their winters, you know they've got nothing on ours.
41. You only recognize two seasons: fishing season and waiting for fishing season.
42. Almost everything you'll ever need can be found at a hardware store or a sporting goods store.
43. You need an air conditioner when the temperature soars into the 60's.
44. Your three-wheeler/four-wheeler/snowmachine gets more use than your car or truck.
45. When giving someone directions, you've said "...and turn right when you come to the giant snow pile..."
46. You've ever had a snowball fight in the summer.
47. You've worn an evening gown/suit to the prom along with rubber break-up boots.
48. "The lights are out" isn't referring to a power outage.
49. When the lights are out, you go outside and whistle.
50. And you understand what this means.
51. You've had a check refused in the Lower-48 because they don't accept foreign currency.
52. You miss school for a week because the river isn't safe to cross.
53. You have never seen the summer star constellations.
54. You can tell how cold it is outside by the frost on the inside walls.
55. It has been -20°F for two weeks, warms up to 0°F and you call it a warm spell.
56. You laugh when the media makes a big deal about a magnitude 4 earthquake in California.
57. You would pay $10 for an old head of lettuce.
58. You get annoyed with movies/TV shows that have trees around Nome or polar bears in the Panhandle.
59. You cheered for Binky.
60. When making hotel reservations, you think nothing about asking if the room has its own private indoor plumbing.
61. You can't see right to drive unless you are looking through a cracked windshield.
62. If the airplane bounces only three times, you consider it a good landing.
63. You know the proper way to pronounce "Nunam Iqua" or "Asaacarsaq"...
64. ...you know where they are...
65. ...and you've been there.
66. You drive 65 miles per hour on a winding icy road during whiteout conditions and not even flinch.
67. You measure distance in hours, not miles.
68. Nobody seems to notice or care if you're at a social event wearing a camouflage hunting shirt, Carhartts, steel-toed boots, and a dirty baseball cap and you haven't shaven all week.
69. Your four food groups are fish, moose, Spam, and beer.
70. At least half of your friends have hit a moose with their truck at least once.
71. Your idea of sexy lingerie is an unbuttoned flannel shirt.
72. You don't need a freezer; you just keep your frozen goods on your porch.
73. You know at least seven ways to serve moose.
74. You have aluminum foil over your bedroom windows.
75. You can see the road through the holes in the floor of your pickup truck.
76. You leave your car running all night long because you're sure it will be too cold to start it in the morning.
77. Everyone automatically assumes you're a Jewel fan.
78. You think the Red Green show is a documentary.
79. You see nothing odd about barbecuing when the temperature is -20°.
80. You get tired of people asking if you eat penguins.
81. You've ever used your snowblower on your roof.
82. Your brake light is a piece of red cellophane and duct tape.
83. Your school has ever served fish head soup for lunch.
84. You know ten ways to prepare Spam.
85. You listen to one of Jeff Foxworthy's You Might be a Redneck jokes and think "Hey, I've done that."
86. While on vacation in Hawai'i, you see a beautiful girl in a bikini and picture her in snowpants and a parka.
87. You wear black steel-toes boots with your suit and tie.
88. You don't know anybody who doesn't own a snowmachine or 4-wheeler.
89. You prefer the smell of mosquito repellant over your wife's perfume.
90. All your clothes came from Cabelas, LL Bean, or the Salvation Army.
91. You know at least ten words/phrases of Russian, Japanese, and/or any Native Alaskan language (i.e. Yup'ik, Inupiaq, Tlingit, et. al).
92. You don't look north to find the north star; you look up.
93. Your snowblower gets more use than your lawnmower.
94. You think it's normal for a town to have all its businesses on one side of the road.
95. You've seen antifreeze freeze.
96. You've never taken your truck out of 4-wheel drive.
97. You've needed to use your car's sun visor at noon.
98. You've ever washed your car in below freezing weather.
99. You know if you tell your kids to "be home by dark" you won't see them until Fall.
100. You earn over $80,000 per year but still shop at Walmart.
101. The only stores in your town that are open on Sunday are the liquor stores.
102. You've had to explain more than one item on this list to somebody.

Life in rural Alaska

To start out, I live in a state that is five times the size of Texas but has a population around the same size as Austin.  We have less than 1500 miles of road within the state and our state capitol is not accessible by road.  You either need to boat in or fly in to do state business there.

Russia lives 50 miles off of our Western shores.  In the winter, when the water freezes, it is possible to walk between Russia and Alaska.  It's dangerous, but possible.  If you go from Alaska to Russia, you will be met with guns and arrested immediately.  Not so if you are coming the other way.

On the North Slope of Alaska, the sun does not go down in the summer.  It just makes a circle in the sky.  In the winter, the sun does not come up.  The temperature drops to 80 below and that is before you take into account wind chill.  And believe it or not, the North Slope of Alaska is flat.  There are no mountains there.  Just miles and miles of flat, frozen tundra.

I live in a small community.  We are on the road system but three hours from a decent sized city.  Our estimated population here is around 4,000.  However, a number of the 4,000 go south for the winter and in the summer 30,000 tourist hit our shores.  There is no Target, Sears, or Nordstroms.  It has been so long since I have been in the lower 48 that I am not sure if Nordstrom still exist.

In the town I live in nearly all the restaurants carry the same menu.  You have your choice between burgers and fries, mexican, greek, or pizza at nearly any restaurant in town.  The is no Red Robin, Chili's, Olive Garden, Roadhouse.  (Man, I miss the never ending salad bowl and breadsticks!) No real chain restaurants to speak of except MacDonald's and Arby's.  There is a Carl Junior the next town over and they have a Pizza Hut too.

There is not a lot of industry here.  Many of the men work as guides or commercial fisherman in the summer.  Or, like my husband, they fly to work either on a platform or up on the North Slope and are gone for a week or two, or three depending on their schedule and then they come home for a couple weeks before going back again.  Other men work in the mines and are gone six months at a time.  There are plenty of women that work those jobs too but there are more men up there.  Someone has to stay home and watch the kids.

The snow flies here by Halloween and normally does not melt until May.  Winter feels like an eternity.  And did I mention that it is dark to boot.  Here on the peninsula we have around 3 hours of daylight per day  in the winter.  Temperatures drop as low as -40.  Summer is nice.  We rarely rise above 76 degrees in the summer and it is daylight for nearly 24 hours.  It might get a little dusky, but not enough to interrupt fishing.

As I posted in an earlier blog, the wildlife is amazing.  Moose come directly in our yard.  Unfortunately for our last rabbit, so do bear.  Garbage and dog food cannot be stored outside.  Do not hang brid feeders, ever!!!!  And you darn well better believe we skin and filet our fish at the river.  You best not plan to do it in my backyard.  If you try it, I will send you straight back down to the river with your bloody fish carcasses.  No reason to purposely attract bear into the yard.  I can handle losing a rabbit or two but I want to do my best to keep my children safe.  We have had bear eating moose right across from the end of my driveway and I cannot see that a bear will differentiate between a moose and my child.

We homeschool more children here than in any other state.  I too have joined the ranks of homeschooling momma's.  We also have less regulations on homeschooling so we have some real smart ones and we have some real idiots.  Spend some time here and you will discover that homeschooling has been around for a long time here.  At least I assume the problem with some of the people I meet can be blamed on homeschool.  Or maybe it is just inbreeding.  I truly hope my children fall into the smarter category.

The area I live in was originally close to a native village.  Homesteader's were given land for free providing they lived on the land that they were given.  Alaska is not a very forgiving place to homestead.  I cannot even imagine how the early settlers in this area survived.  I can tell you that many of the original homestead families still exist.  Not the homesteader themselves, but their children and grandchildren.  Yes, their children.  The missionaries did not really settle into this area until the 1940's.  Prior to that, the area was native and russian orthodox.   There is still a large Russian population and many of the Russian Orthodox live in small isolated communities at the end of the road system.  Their villages are not easy to get to and they do not really like uninvited guest.  As a whole, they are polite and friendly people.  They just like their privacy.  As for the native village, well, it is long gone.  We still have plenty of villages out in the bush but the villages did not survive along the road system.

Alaska is a carry and conceal state.  Most of the population owns firearms.  If you have a problem with that, I invite you to go hiking, unarmed, into the Skilak Lake wilderness area.  If you come out alive, then we can talk.  Skilak Lake is home to more bears than any other area in Alaska.  Both brown bear and black bear live in abundance there.  If you want to distinguish black bear skat from brown bear skat, just look for the bear bells.  Bear bells are bells worn around a hiker's ankle and they are suppose to help warn bears you are in the area.  A bear will hear the tinkle of a bell and run away in fear.   I personally think they work more like a dinner bell.  They ring "supper's ready, come and get it!"  Your other non firearm option is bear spray.  Unfortunately, most people carry bear spray in their backpacks.  There is not a lot of time to search your pack when a bear is charging.  I have not heard of an bear attack yet that was thwarted by bear spray.  There just isn't enough time to react.

One of my favorite misconceptions about bears is that when you go out in a group, you just have to be the faster runner.  Most people do not realize that a bear chooses it's target.  That bear could very well charge past your slowest runner if it decides you are it's intended dinner tonight.  And did you know that a bear can smell blood up to five miles away.    Need I say more ladies....

We have tons of moose here.  Despite what tourist tend to think, moose are wild animals.  They are not similar to horses and I definitely advise against attempting to pet them.  Chasing them with your camera in hand is also not the best option.  They will charge you and stomp you to death.  They do not like people.  They are not friendly.  And no, female moose do not have antlers.

Oddly enough, we do not have skunk here.  I cannot believe I am going to say this but I miss the sweet aroma of skunk.  Not close up skunk smell but the smell of  skunk that has been discharged in the distance.  Far enough away to just get a whiff of it, but not close enough to sting your eyes and permeate your skin.  We also do not have snake, raccoon, or possum here.

To be continued.....

The death of the rabbit

Yep.  That's right.  The rabbit died.  We recently picked up five rabbits to raise and Coty, my 15 year old autie found one of them dead in the cage today.  We, that being him and I, made the executive decision to tell his sister the bad news and allow her to say a final goodbye.  I had no idea where that would lead.

Next thing I know, my 10 year old nuero-typical child, Bailey comes in to inform me that her brother is skinning the rabbit.  Once that is done he is going to cut it open and perform an autopsy.  I kid you not.  This is so my kids!  I honestly figured this was Coty's idea.  However, I learned later that Bailey requested that the rabbit be skinned so that she could keep it's pelt.  Coty felt the autopsy was necessary to determine cause of death and as he put it, he loves looking inside to see how things work in there.

After the skinning, Coty cut the poor thing open and discovered that the liver was riddled in white spots.  It appears we are dealing with a parasite.  Based on this, we are going to pick up meds to treat the other rabbits.  Go figure. I wonder what they will come up with next. 

Living with autism

Living with an autistic teenager is one of the hardest things in life.  Day to day is such a roller coaster and you never know from moment to moment what is coming next.  Every single time you think you have things under control, life turns around and whacks you in the head.

It is the little things that you miss: the things most parents take for granted.  The words "I love you, Mom" followed by a huge hug.  The touch of your child's hand held in yours.  That back and forth verbal patter between parent and child.  All of that is mostly absent in the home of an autistic child.

You live with a stranger most of the time.  This is the child you raised but there is a whole world going on inside them that you are not party to.  There is no deep emotional discussions or the long rambling on about what the future might hold.  Conversations are so superficial, about as deep as a puddle after a light summer rain.

There is no such thing as a fair fight with an autistic teen. Without the emotional bonds, there is nothing to hold them to you.  Let them get out the door and they might never come back.

I live with an autistic teen and it has been the most frustrating, irritating, heart wrenching part of parenthood.  Yet, at night when he is asleep in his bed, I sneak in and watch him sleep.  I imagine the child he could have been and the adult I hope he will someday become.  I am running out of time.  He is fifteen, soon to be sixteen.  There are only a couple years left to shape him.  I can hear the ticking of the clock and I am afraid.  Afraid to lose him, afraid to fail, but more afraid of letting go.  I love this child with my heart and soul.  He takes so much and gives so little but he is still mine.  Flesh of my flesh.  I long for the words "I love you" and the brush of his lips across my cheek.  I long to hear his hopes and dreams for the future.  But most of all, I long for the knowledge that he will be alright.  That he will someday learn to drive, get married, have children, provide for a family.  That we will be able to look back and say we did our job and he is successful...

Bailey gets her feeding tube

On August 3, 2011 Bailey went into surgery and the PEG was placed.  She no longer has a long tube dangling from her nose, around her shoulders, and resting on her chest.  Now a hole goes straight into her tummy through the abdomen wall.  Her PEG will be in place until October 5, 2011 at which time, it will be removed and replaced with a mickey button.  After she has her mickey button, I will be able to change the button monthly on my own.  

Bailey's PEG

Bailey's next concern came out while trolling the hospital corridor.  She started thinking about the tube and what that would mean for her physical appearance.  She says to me, " I guess I won't be able to model with this feeding tube."  I assured here that with todays technology modeling should not be a problem.  A photographer could either decide to leave the tube in the picture or airbrush it out.  The next morning, I took my own modeling picture of Bailey and her tube.  I chose to leave the PEG visible in the picture.  Why should she have to be shy or embarrassed about it.  She is beautiful and the PEG cannot take that away.  

For now, Bailey seems to be adjusting to the tube well.  They set us up with a feeding pump at the hospital and I really prefer that over gravity feds.  Unfortunately, over the last week she has started vomiting again.  We are not sure why yet but suspect that acid reflux is the cause.  We are working on becoming more consistent with her reflux meds and hope that makes the difference.  As of today, Bailey has stopped eating nearly all food and relies strictly on formula for nutrition.  After trying three different formulas, Neocate Junior with probiotics ended up being the one she could tolerate. She is currently taking 50 ounces per day through the tube.  Bailey currently weighs 64 pounds.  Her optimal weight is 81 pounds.  She has grown 3 inches since she stopped eating food.  We have a long road ahead of us.  This is just the beginning of our journey.

Reflections Before Surgery

It is the end of August and Bailey is finishing up her second week at girl scout camp.  I have not heard anything from camp so her tube must be holding.  Only 4 more days until her surgery.  I am not sure how her weight is holding up.  She lost a half a pound at camp last time, so they were going to add an extra feeding a day to increase her calories to make up for her increased activity.  At last weigh in before sending her back to camp her weight was up to 66.

It sounds like the other girl scouts adjusted well to Bailey's tube feedings.  Bailey decided to have her tube feedings in the mess hall while the other girls were eating so she could sit with her unit rather than going to the nurses office.  I am amazed at how well she has adjusted to all of this and how she is willing to put herself out there.  She seems to have so much more confidence.

The staff has also been amazing.  On this leg of camp, Bailey had an overnight hiking and camping adventure away from the main camp and the staff really took time working out the details so Bailey could go with her unit and still get all of her feedings in.  Lemonade, the camp cook even dehydrated cherries for Bailey to snack on during the trip.

I do look forward to having her home tomorrow.  Even though I know she needs to have these experiences, it is really hard to have her gone with all that is going on.  I am not looking forward to the surgery next week.  I know it is not a huge deal but I started watching some videos on youtube and I am a bit freaked out.  I really hope I can step up and be vigilant on properly caring for her with the new tube.    I guess it is more the fear of the unknown.  This is all so new and so different.

If I really analyze what is bothering me, it is the pain and discomfort she will have to endure.  The pain will be short lived, the worst of it being over within a day or two. But we work so hard to protect our kids, to raise them with a level of innocence.  And in a few days, a bit of that will be taken away.  And it isn't that she hasn't already suffered pain.  Eating food causes plenty of it.  But it's not the same.  This is pain I am allowing.  I really hope I am making the right decision and this is the best for the long term.  I hate this disease and what it does to her.  I just have no idea how to fix it, how to make it better.  This is one thing I cannot kiss and make it better.

Life Without Food

My daughter is 10 years old and she is allergic to food.  What kind of food?  Well, pretty much nearly all food.  She currently can eat grapes, melon, and cherries.  However, she does have a new rash and the cherries are suspect.

Bailey has a disorder called Eosinophilic Gastroenteritis or EGE, for short.  When Bailey eats food, her body sees the protein in food as an allergen and it produces white blood cells called eosinophils.  The eosinophils are building up in her stomach and intestine and are causing damage.  The cilia in her intestines were no longer fingerlike, instead they were blunt and that prevented her from being able to absorb nutrients.  EGE can only be diagnosed by doing an endoscopy.

But Bailey was not always sick.  Up until first grade she was a normal, healthy little girl.  She could eat anything she wanted.  Then suddenly she began complaining of stomach aches.  After a few months she began vomiting every time she ate.  We took her to a doctor and he sent us to an allergist.  The allergist tested her and said she was allergic to corn, all meat and poultry, dairy, nickel, and cobalt.   Nickel is in nearly all plant food and in seafood.  Feeding became very difficult.  We did our best to eliminate what she was allergic to but it was extremely hard.  And for awhile she did okay.  Then earlier this year she became really sick again.  She missed a full month of school just before spring break.  So, the doctor sent her to a gastroenterologist and the diagnoses was made.

At first we tried an elimination diet and Bailey started taking Budesonide.  Budesonide is more commonly used in a nebulizer for asthma.  But instead of inhaling it, we had to mix it with sugar and ingest it.  (Usually they suggest mixing it with Splenda but Bailey is allergic to Splenda.  It has corn in it.)  Unfortunately, it wasn't enough.  So, then we dropped even more food and started on a special formula.

Bailey was allergic to the first few formula's we tried.  We finally settled on a formula called Neocate.  Neocate is made up of amino acids so Bailey takes the formula and then her body builds its own protein. It has all the vitamins and minerals her body needs.  However, the formula does not taste well and Bailey could not drink enough.  By this time she was only eating a cup of rice a day,  grapes, watermelon, potatoes, strawberries, and homemade bread made of flour, sugar, water, and oil.  Unfortunately she was still having an allergic reaction to food.  She took benadryl daily due to rashes and intense itching.

So, the next step was to remove all food.  We went back to the hospital and the inserted an ng tube.  An ng tube is a feeding tube that is inserted into her nose, down her throat, ending at her tummy.  Inserting the tube was extremely traumatic.  However, two days after the tube was placed and food was removed from her diet, Bailey came and told me she was glad she had the tube.  It was the first time she had felt full.

You need to understand that during this time, Bailey dropped from 68.5 lbs. down to 59.  She had less than 7% body fat.  Things were not going well.  After two weeks with no food, Bailey's rashes cleared up, the itching stopped, she began growing taller and gaining weight, and her stomachaches and headaches stopped.  But the best of all was that her whining stopped.  This child whined a ton and suddenly it just stopped.  She was a totally different child.  We even discovered a sprinkling of freckles that we never knew were there because they were covered under red skin.

After a few weeks without food, we began food trials.  We started with grapes, melon, and rice.  (Staying under one cup of white rice a day because rice has nickel.)  That seemed to okay so we added cherries and potatoes.  She reacted to the potatoes.  Next we tried beef.  She reacted to the beef.  Avocado came next without luck.  Then egg.  We thought we had a plan with egg.  We made it a whole week and on the day we planned to add shrimp, she got sick from the egg.  We were so bummed. Took a break to allow the egg allergy to clear and then started shrimp.  Shrimp was one of her favorite foods previously.  It only took two days for the reaction.  At this point we had a follow up with the gastroenterologist and we made the decision to stop food trials.  Bailey was losing weight again and it just wasn't worth it.  So, for now we are back to cherries, grapes, and melons.  Bailey was eating 2 lbs of cherries a day though and I think she is now starting to react to cherries.  We are backing them out of her diet and we are trying to make sure she doesn't overdo the grapes or the melons.  She needs something to eat.

She still has the ng tube but it is nearing 3 months with the tube down her nose and they don't normally last that long.  We've been to emergency a couple times with a blocked tube but have been blessed to have the blockage cleared.  She is scheduled for a g tube on August 3rd.  (A g tube is a tube inserted through the abdomen into the stomach.  G tubes are used for people who will need to be tube fed for a longer period of time.)  We are worried about the ng tube holding up but Bailey has girl scout camp coming up and the g tube takes time to heal so we want to hold off until after camp.

I have to give kudos to Girl Scouts of America.  They are wonderful about including special needs kids into their camp programs and making it possible for them to enjoy as much of a normal camp experience as possible.

As for Bailey, there is no cure for EGE.  It is a chronic and debilitating life long condition.  What it will mean for her future we do not know.  For now the plan is to go three more months with no food and then begin food trials again.  To learn more about this condition, please visit: http://apfed.org/drupal/drupal/index.php