Results from Spinal Tap

I feel like we are just as far away as ever from finding an answer and boy is it getting old!
Kai spoke with his Doctor this evening and he said the results come back showing signs of lupus, but he isn't convinced that it could be lupus because Kai has NO symptoms whatsoever of lupus. The Dr. said he will need to see a rheumatologist to make the lupus call. The doctor also said that according to Kai's spinal tap his body is making all sorts of antibodies to diseases/illnesses that Kai doesn't have. Weird.

Thank you to all the people who continue to bless us. We had a wonderful Christmas thanks to many people around this little town of ours. You know who you are even if we don't know who you are:). Thank you!!!

Indoor Tanners of the World Unite

I saw this on the Yahoo News about the Senate's new he health care bill that passed.

"Indoor tanning. Beginning in 2010, there would be an additional 10 percent tax on the cost of indoor tanning services, to help pay for health reform. No kidding. The House bill contains no such provision. Yet."

Another provision is mandatory insurance. I do think it is good to have health care insurance, but for the first time in the history of America you will have to own/purchase something to be in accordance with the law- to be legal. That doesn't sound American to me. I was under the impression we were free to choose our lot in life.

Sorry, I couldn't stay away from politics forever.

Spinal Tap

Kai had his spinal tap yesterday and all his worrying turned out to be for naught. The nurse performed the procedure with excellent skill. He didn't feel any pain except for the slight pinching of the numbing shots. He has had to lay down flat for 24 hours- he still has an hour to go. He was only sad that it wasn't New Year's day so that he had an excuse to lay around and watch football all day.

We should know something in a couple of days. I am praying that this test will give us some answers because I don't want to do anymore!

Merry Christmas to all! I promise next year we will give out neighbor/friend gifts and send Christmas cards . . .it just isn't happening this year! Thank you to all of you who have made our Christmas feel special with gifts and goodies and Christmas cards. We feel so blessed to have so many wonderful people in our lives. We have seen the hand of God through your love and kindness.

Meet Ginormica, the Conifer

Upon entering our humble abode one might be forced to stifle a chuckle or disguise the look of surprise in one's eye at the sheer sight of our Christmas tree. It's mass no doubt is out of proportion with our small living room and thankfully we have vaulted ceiling to adjust for the tree's height of almost 9 feet. It is not so much the height that is astounding. Many people have trees that are much taller. In our case it is the width that adds to the overall presence of our beautiful evergreen. From left to right it is almost 6 feet across ( I measured.) The tree easily takes up a forth of our living room making it quite cozy indeed. (the pictures really just don't do it justice.)
We have enjoyed having our beautiful forest tree decorated and watching it twinkle with festive lights and the squirrel family that finds refuge in it's thick branches have finally provided pets for my children. We really do love it and are thankful to Amanda and Matt for bringing it to our home.
Here's to you Ginormica- Merry Christmas!

When we visit my family for Christmas my Grandma usually invites us to her house to decorate gingerbread houses. We love doing this and we love spending time with her. When she heard we would be unable to visit this year because of Kai's medical issues and doctor's appointments she decided to send the activity to us. This year it was gingerbread men. It was so wonderful to do because the tension in our house had been so high and the kids really needed something fun and messy to do. Thank you Grandma- this was exactly the kind of thing my kids needed. even Malachi got it on the action.

Some dear friend's that we made in Hawaii Fedexed Kai some ice cream for his birthday. I already told you that story. What I didn't tell you was that they used dry ice to keep the ice cream nice and cold for the long journey between Ohio and Nevada.

Dry ice is a wonderful toy.

Finally, Kai's brother Ben and Amanda brought Kai a nice yummy cake for his birthday. It is his favorite and it was very nice. Now only one thing is left unfulfilled. Every year since Cambria was born we have given a snow globe to Kai for his birthday. He loves them and it has been a fun tradition. The only problem is this year that has yet to be done. I haven't been able to find any worth buying at the small selection of stores we have in our area. If any one has seen a good snow globe- let me know where you saw it so I can get one for Kai for Christmas. Target, Costco, a Hallmark store? There has got to be a good one out there somewhere!

As I mentioned before . . . Kai's spinal tap is scheduled for Tuesday morning. I hope we will finally have answers.

Spinal Tap has been Scheduled

I am getting so tired of writing about medical stuff. I hope with a fervent hope that this spinal tap scheduled for this coming Tuesday will finally give us the answers we need so that we can treat whatever is wrong and move on. Well, in a sense Kai has moved on. He is feeling great on this new medication and he is back to work and coaching basketball. So much so that my kids will go a day or two with out seeing him because he is gone before they wake up and gets home long after they are sleeping. Sometimes I feel like a secretary on a payroll organizing all his medical appointments and coordinating with doctors:)

From what we hear spinal taps are unpleasant and we are hoping that come Christmas morning Kai will feel as good as he has been feeling.

Thank you, as always for continuing in prayer and acts of kindness in word and deed. We have been blessed much through family, church members and members of the community. Thank you a million times over.

I promised my mom I would take a picture of our abnormally large Xmas tree brought to us by Kai's sweet cousin Amanda and her husband. So the next post will be about our big tree Ginormica.

This week's doctors visits . . .

We love the new Dr. we saw in Vegas this week. Dr. Bangalore was amazing. He spent three hours with us trying to understand every one of Kai's symptoms and making sure we understood everything he was saying. He was even very optimistic about treatment saying that Kai might just need to stay on KEPPRA for a year and then we could wean him off in the hospital and see if anything happened.

Then he looked at the MRI.
He was much more serious after that.
Kai definitely has an abnormal MRI with very strange flairs on his brain that mimic MS, but are in all the wrong spots for MS.
The most confusing thing . . .Kai looks healthy. Not sickly.

Dr. Bangalore wants to do a spinal tap in the next two weeks (as soon as our insurance company gives us the go ahead). He says the spinal fluid is like the brains sewer system and anything that happened in the brain gets dumped into the fluid. It should be able to tell us what is going on. He says our next step would be a PET scan. He also ordered a whole new array of blood work to be done (we actually did it yesterday) in search for a virus that might of caused this problem.

We are happy to postpone the brain tissue biopsy.

We have an appointment for the Mayo clinic in the latter part of January. Thank you to all of you wonderful Arizona people who offered your homes to us. We haven't quite decided what we are going to do. Our insurance doesn't cover the Mayo clinic so life may get interesting.

Kai hasn't been back to work since last Monday. He feels better but he still tires easily.
He can't drive for three months from November 30Th, the date of his last episode. This drives him nuts just as much as being mostly home bound.

Thank you again for the prayers and gifts and phone calls and dinners and other support. We feel so blessed to be surrounded by so many who are willing to give. I know without a doubt there are angels among us.

Waiting . . .

The worst part is waiting . . .waiting to see if a seizure will break through the meds again, waiting for the doctor to call, waiting for the day of your appointment, waiting to hear a diagnosis . . .waiting . . .and wondering.

Once again may I start with my gratitude for the outpouring of love and well wishes and call and comments and visits and dinners and babysitters and fasting. We are truly humbled by it all. You all have truly been a blessing in this time of test and trial. We "celebrated" Kai's 32 birthday on Friday. (I took him to see The Blind Side- great movie.) We have some wonderful friends and family members who made this day special. The Christensen's even FedExed Kai Ben and Jerry's from Ohio. That was a first and it put a wonderful smile on his face to feel of that friendship. I think the hardest thing for Kai has been the down time and the monotony of it all. Thank you for bringing him some happiness.

The new medicine Kai has been taking has been great. Though he still tires easily he is no longer sleeping all the time and it feels like he is back among the living. He even went to work today. I made him ask his dad to go with him just in case. Poor Jim, He hasn't been to high school in many moons. I hope he can stay awake. He is to be Kai's shadow all day.

As far as answers go, tomorrow we have phone conference with a doctor in Texas. Wednesday we see a doctor in Vegas . . . hopefully we can put a name to Kai's condition because the unknown is very hard to deal with.

Fast and Prayer

We are having a ward fast for Kai on Sunday. I know some of you have already fasted for him and I thank you. We would be honored if any of you would join our fast this Sunday, Dec. 6 for Kai's health and well being.

Kai's birhtday is Friday, December 4th.

MRI

The MRI revealed "flares" in Kai's brain. The Dr. says "they are signal changes in the brain tissue suggestive of inflammation of veins or nerves." The flares occur on both sides of his brain. I saw the pictures. They look like bright spots of light.

He also said "this is strange enough to call in the big guns." I guess the pictures looked similar to MS but MS usually shows in the center of his brain and these flares were mostly around the edges of his brain (if you were looking down at his brain from the top of his head.) He threw around names of some possible diagnosis' but i would prefer not to speculate.

He has referred us to the Mayo Clinic in Scottsdale, AZ so that they can do a biopsy of his brain tissue.