Tuesday, September 29, 2009

Thank you EVERYONE for your comments of prayer and letting me know you are thinking about me and the family.
Yesterday was very long but VERY SUCCESSFUL!
That's right ladies and gentlemen.
WE HAVE FOUND AN ANSWER!

Monday the hospital injected radiation into my spinal fluid. That wasn't painful at all. Just a little prick of the numbing needle. Then they stuck cotton balls up into my nostrils coated with a numbing agent (cocaine to be exact. Now how can I ever tell my kids that I've never had drugs up my nose?!).
That was painful.
10 minutes later he inserted a long "skinny" absorbent material up my nose and into my brain. Okay, so it really wasn't into my brain. He had to shove it so far up that it felt like it was into my brain. That was VERY PAINFUL. But no tears. He then had to put another one into the same side of the nose and repeated the process to the other side.
The strings were to keep track of which one was which (right upper and right lower, etc.).
Instantly my head soared into a migraine.
I've never before been able to make myself get a head ache or relieve a head ache. But at that moment we discovered that the root of my headaches has something to do with my nose. (definitely rules out tension, muscles, TMJ, food allergy, etc.).
I had to wait 4 hours then went back to be scanned. The scanner showed where the radiation was. The nasal swabs had radiation on them. That means I have a leak in my spinal fluid somewhere behind my nose or eyes and that is what is causing the pressure and headaches!
WE HAVE AN ANSWER!
When they pulled out the nasal swabs my head went through the roof. From that moment on I have had the most severe migraine of my life. the only way to relieve it (we finally discovered tues evening) is to lay with my hips raised above head level.
I am so thankful to all who have and are and will be helping us. Watching the kids, taking them places, meals, prayer, etc. We could not get through this with out you all.
It is pretty hilarious watching me try to do normal things. The instant I raise my head up at all it shoots severe pain. This morning I laid out in the kitchen on a bath mat during breakfast. I felt like the family dog. When I ate I found that if I went on my knees and leaned over like a dog, so that my hips were higher than my head, that the pain wasn't as bad. That was the only way I could eat my breakfast.
Andrew has has had to take it all on and has made sure everything is taken care of. The kids are trying to be as helpful as ever also.
I feel so helpless.
I know that we will get through this one day at a time, Hopefully soon we'll be able to make arrangements to fly to the Mayo Clinic to have this leaky faucet fixed.
I can't spend much time on the computer because it hurts too much to write. But I wanted to let you know what is going on.

Thursday, September 24, 2009

Headache update

Today we had a busy day.
(not that you care about every detail of our day, but it feels good to just spit it all out!)
:)

Joshua went off to school.
I taught Angela school while trying to keep Jeremy busy. (he's doing a lot better these days. I put him in his room for about 30 minutes so he can play and read books. He usually does well, today we ended up with a book with all the pages torn out).
Mid morning we took my Grandma with us to the park. We have a bunch of friends that get together every Thursday. It's great for the kiddos to play together and it's great for the Mama's to have time to talk and encourage each other.
Then we hurried off to pick Joshua up from school.
Ran home and settled Grandma into her house.
Scooped Jeremy up and settled him into his bed for a short nap.
I laid down to rest my eyes.
1/2 hour later we were back up and running.
The kids all went with my Mom to the park so I could go to the Lab and have some blood drawn for tests.
Then I came home, looked longingly at the bed to take a nap. But I knew if I dozed off now it would make me feel miserable.
Dinner came and went.
The older two kids and Andrew went off to hear an orchestra play.
I changed a couple beds, made piles of laundry, put Jeremy to bed...
And now am relaxing!
Whew.
_____________________________________


Here's an update on what I'm doing next to figure these headaches out:



Next Monday I am doing a procedure called: Radionuclide Cisternogram

Definition

It is a nuclear scan test used to diagnose spinal fluid circulation problems.

How the test is performed

A lumbar puncture (spinal tap) is done first. Small amounts of radioactive material, called a radioisotope, are injected into the fluid in the lower spine.

I will be scanned 4 - 6 hours after receiving this injection. A special camera creates images that show how the radioactive materials travel with the spinal fluid through the spine and if the fluid leaks outside the spine.

I will be scanned again 24 hours after injection, and possibly at 48 and 72 hours after injection.

This test will tell us if I have a spinal leak somewhere, or not.
If I do, then we'll be able to fix it.
If I don't then we will fly back to the Mayo Clinic for the next step.

I've heard that this procedure can be very painful.
The blood patch that I just went through was more painful and took longer to recover than I had anticipated.
Please pray for endurance and courage through this.

(9/28-30/09).

Tuesday, September 22, 2009

Welcome Fall

It IS FALL!
My favorite time of the year!
(Now if only the weather would cooperate).
Cold nights
Warm fires
Amazing colors

Comforting coffee

Refreshing wind
Sprinkles of rain
______________________________________

Today Andrew took Angela to work with him.
They had a little breakfast date and then will spend his work day together.
She was so excited to be with Dad.


Monday, September 21, 2009

I feel like I've been on a deserted island this past week.
Our internet has not been working.
Our phones have not been working.
and then I got run over by a bad cold.


I have been taking it easy the past week allowing my back to heal from the blood patch, and hoping that this would be the answer to my headaches. I was told that the results should show pretty quickly if this procedure was the answer.

It is hard to tell if the blood patch has worked or not (because I've been dealing with this nasty cold). I have a feeling that it didn't, just because the 3 days afterwords did not show any difference. But we're giving it a good couple of weeks before we'll know for sure.

I'll post some more later,
I just had to write something quick since we just got connected with the outside world again!

:)

Tuesday, September 15, 2009

Mayo Clinic Headache

We are in Arizona at the Mayo Clinic.
Our experience here has been so pleasant. Everyone here has been kind, happy and well organized. We've been treated with respect and great care.

We talked to the neurosurgeon.
He gave us a thorough visit and explained the situation completely. Good news and yet not what we expected.

He told us what we already knew:
I have a meningioma on the lining of the brain. It isn't cancerous. It is growing slow. It is small (about the size of your thumb).

Next he told us what we weren't sure of:
It is located in a spot where it wouldn't affect my body with the symptomns I am experiencing. It is still to small to do any harm. The brain that is being pushed up by the tumor is not enflamed or irritated. He said that sometimes meningiomas do not continue to grow.

So...
he feels that the best thing to do is to watch the tumor and in 6 months do another MRI to see if it has grown. Then we can know how fast it is growing and if it is growing at all.

But then he addressed the symptoms I have.
If the tumor isn't causing the symptoms then something else is.
Once again I was conflicted with emotions.
So HAPPY that I won't have to undergo surgery any time soon. Confused because all my symptomns could be explained with the growing tumor. And frustrated because we've tried everything we could possibly think of to figure this out.

But then he said that later we would be meeting with a neurologist who specializes in headaches.

Dr. Vargas.
He completely listened, asked questions, clarified answers (not in a demeaning way but in a very knowledgeable and wanting to understand way).
About half way through he said he had some ideas...
Did you hear me??
He said IDEAS!
We LOVE ideas! We are out of ideas.
He asked me a few more questions to try and confirm some of these ideas.

One of the things he identified is nothing that I have done has changed my headaches or affected them in any way except when I lay down. When I am sleeping, I do not have headaches. When I am walking around, I have headaches.
Then he began to tell us about the spine. There is fluid that runs up the spine and back down again. He explained that if there is a tear or puncture of any kind along the sack that holds the fluid in then it leaks out and doesn't allow the right pressure to take place to move it along evenly. It will build and lessen instead of having a regular and even flow. Thus laying down would cause the flow to be even and standing up would cause the flow to be more difficult.
The way to find out if this is the case is to treat it and see if the headaches go away.

The treatment is an epidural blood patch.
They take some of my blood and inject it into the spinal fluid it travels through out and finds the hole and plugs it up. That's it.
So this afternoon I went back in and they pulled out 17cc's of blood and they injected into my lower spine.
PAINFUL. Intense pain in my back up to my head. The pain in my head went away but the lower back pain was still very high.
I am laying down at the hotel right now and the pain in my back has decreased. If 1 is low and 10 is high I'm at about a 4 right now. After the procedure the pain rose to about an 8. Now, 4 hours later, it has finally decreased to a tolerable level.
I will write more later. I'm hoping tomorrow will be a great day!
Thank you all for your prayers and love!
We know God is taking care of us.
-Jenn

Friday, September 11, 2009

Arizona Mayo Clinic

Monday we are headed to Arizona.
Andrew and I are flying to the Mayo Clinic so that I can have a consultation with another neurologist and a neurosurgeon. I am looking forward to finally getting a better idea of what is going to happen and when.

Lately my headaches have been bearable. Last night and this morning my head was hurting. I can feel the pressure in my head and behind my eyes it feels like someone is winding up the muscles. I have also been very tired, all the time. I don't think that the tumor has anything to do with that. But it is quite frustrating. I am usually tired after an hour or so of waking up.


This morning I got up to read my Bible.
I opened it up and didn't know where to read from.
I am not in a study right now and I've read all the passages that I have felt lead to read from.
So as I sat there trying to decide what to read Joshua comes to me and asks if I want to read with him. He had finished getting ready for the day and was going to start his bible reading. He is in Revelation and has become very excited about all the different things that he's reading about. It was fun reading through the book with him because he is looking at it with fresh eyes. The book is quite a thriller. There is action, adventure, mystery, and spectacular glimpses into the glory and holiness of God.

I still am at a loss as to what to study, or read. Our church is reading and studying Nehemiah, but I've just finished reading through it (and Ezra the happenings right before Nehemiah).
I don't feel like I can do a study at this point.
My brain cannot handle the thinking right now.
But I don't want to read just to read. Know what I mean?


As a family we are memorizing Psalm 34.
But we haven't been very consistent at it.

Maybe I will devote my heart to studying that psalm, meditating on it and cross referencing it. That wouldn't be too overwhelming. It would be little chunks at a time that I could "chew" on.

Yes, I think that is what I will do. If I can devote my heart to memorizing and thinking on God's Word that would be more valuable in the long run than just reading blindly through a bunch of scripture.
My brain can handle little bits! :) And little bits are just what I need.

...okay, this is going to sound really corny...
(or like Andrew would say "totally home school". It's our joke to each other that every unsilly thing I say -that I think is very funny, but he doesn't- he blames it on home schooling. Of course it's all done in fun and playfulness.)

Anyway, back to what I was saying:

It's kind of like desert.

A big piece of pie is delicious. But when I'm watching a movie or playing a board game. I like to have little munchies that last longer. Like popcorn, chocolate chips, grapes, or trail mix.

So Psalm 34, little munchies, here I come:

I will bless the Lord at all times, His praise shall continually be in my mouth. My soul will make it's boast in the Lord, the humble will hear it and rejoice.


This is a fun picture of Jeremy, Angela and my niece, Edie blowing bubbles.

Saturday, September 5, 2009

Happy Birthday Jeremy!

Birthday Boy Turns 4!

On his birthday we celebrated with a little cake.
He was SO excited!
At the orphanage they would celebrate all the kids whose birthdays were that month for each month of the year.

Jeremy couldn't wait to blow out his candles. He helped me mix the cake, bake the cake and frost the cake. Then we had to wait until after dinner before we could eat it. But about a half hour before dinner I noticed he was hiding under the table. No big deal. He has done that a lot, out of fun. But then I notice him still there a couple minutes later, so I went to check it out. I found a boy with a fist full and mouth full of cake. I look over at the cake...yup. A little monster dug his fingers in!It didn't matter to him that his cake had a full corner missing.
He was proud of his candles.










His "real" party was with the whole family last Sunday.



Carol was wonderful and opened up her home to us so we could all gather together and the kids could:










SWIM!









































After lunch Jeremy got to open
presents. This was a special time because this was the first party he's had.















Jeremy LOVES ice cream!





















Angela enjoys being with her cousin, Edie. I'm so glad they are such good friends.


Happy Birthday Jeremy!

Thursday, September 3, 2009

Two Marathons

Andrew has been training for a marathon.
It is coming up in two months. He has never run a marathon before but he has done many triathlons and even one 1/2 Iron Man.
He is naturally a persevering and competitive person so this has been a fun challenge for him. Every day he thinks about it, talks about it....it consumes him. The way he eats, sleeps and works is effected by it. It has been a great goal for him to pursue.
He told me that much of completing the marathon is mental preparation. He has a rigorous training schedule that he is following also.
The other day as I was thinking about his marathon it struck me that I have my own marathon that I am training for. Sometime in the next couple months I am expecting to have to go through major surgery. I don't know all the details yet (just like Andrew is still learning the course and where the energy drinks will be handed out) I too am still in the beginning stages. There are things that I might have to face that will be difficult. I might have to shave my head. my body might respond badly to the med's they put me on (that happened with both my cesarean's). I might have worse headaches for a while as the stitches heal and the bones fuse back together and the brain returns to it's normal position. I might be in utter exhaustion for a while, depressed, frustrated that I can't function and love my family well.
But that is all part of the marathon.
The most wonderful part is the loving acts of those around us. We appreciate every word of encouragement, every prayer, every hug, every friendship. God uses you in ways you do not know. Just knowing that people are thinking about us gives us strength that we are not in this alone. This is what God had in mind when He created the Body of Christ. Working together to glorify God and love one another.
Thank you all for standing on the sidelines holding up your posters cheering us on. Those loud cow bells make a difference. Even when the runner is in complete pain and lack of energy when they hear the sound of cheering they always rise up with new strength and endurance to make it a little bit farther.