Hark the Angels Sing...

Thanksgiving

We elected not to slave away in the kitchen cooking and cleaning up this year. We dined at PIPAC, a great banquet facility here in the Cedar Valley. These pictures were taken next to the enormous tree in there foyer. The center picture is my parents. The last picture is my sisters and I with our parents. I am the oldest, my sister Karen on the left is next, and the baby is Kathryn on the right. We had a very nice Thanksgiving lunch and later had a touching time sharing what we were thankful for at my parents house. Having 8 people diagnosed with Lyme in our family has brought our family together in this battle. Those battling include: my mom and dad, my sister Karen and her daughter Emilee, my niece Elizabeth and, of course, Scott, Noelle and I:(

All I want for Christmas...

is my two front teeth!

Please!!

Wrestling is in full swing!

Teme's school season is more than half over and he has only lost one match. And the kid's uncle was a college wrestling coach, so not fair! These pictures are from the Hudson tournament on Saturday. He won his bracket. I need to get a picture of the front of his new singlet and post some video footage. I will as soon as possible, but I wanted to whet your appetite.

TobyMac - Speak Life (Lyrics)

I do

I woke up thinking about our wedding. Thinking we should renew our vows and I should wear my wedding dress. (Obviously this part was a dream, as I would have to lose 60 pounds. Ouch!) Maybe for our 30th, less than four years away. I pictured it taking place in the chapel at our church. If you open the back doors I think you would face the sunset. Wouldn't that be beautiful. Then I remembered my vows. And I began to wonder if I have kept them.

August 22, 1987:

"Scott, I take you as my wedded husband. I will live with you always according to the word of God. I will strive to live so that you may always see God's spirit shining through me. I will be honest with you, encourage you, respect you, and be faithful to you. I will attempt to always be sensitive to you. I will watch not only what I say but how I say it. I will be flexible to any changes God might bring into our life together."

"But most of all, Scott, I will never give up on us, for I know God has brought us together."

There are a lot of "ouch"s in there as well. I have had a tendency to use the struggles we are going through, especially Noelle's health, as an excuse to take out all of my stress and frustration on Scott. Lord, forgive me. Scott, forgive me. Lord, help me!

My tongue has always been a source of frustration. I even gave a sermon on James in high school. And of course James is what we have been studying in my small group lately. For sure, the two things God has been talking to me about lately are my tongue and gratitude.

So join me in thinking before you speak, and in giving thanks. Perfect week for both!

PICC, round two

On Wednesday Noelle received her second PICC line placement. Everything went well. She had a nurse that she is familiar with. Thank you, Tracey. In the second picture they are x-ray-ing Noelle's chest to insure proper placement. For those not familiar with a PICC line, it enters Noelle's arm and runs up her arm and across her chest near her heart.

We were surprised to find that her antibiotic will be delivered by a small portable pump. When she had her first pump we administered her antibiotic by syringe or ball pump every x amount of hours. This time she will have her antibiotic administered every four hours for an hour. So she is connected to the line 24/7. It is a little awkward and I think it makes Noelle feel a little more patient-y:( I keep telling her to remember that we are killing the Lymies every four hours!! A little hard to remember when the pump wakes you up.

Noelle has not had a "seizure" episode since last Friday, over a week. That is such a blessing. She has been in incredible pain. Many people ask where her pain is, and she answers everywhere. She really is not exaggerating. In order of frequency: legs, head, arms, back, neck. She also has a lot of stomach upset. The stomach issues have gotten worse with the antibiotic. It has also given her a sense of being cold.

We are trying our best to find joy in our situation. It is hard to watch Noelle in pain every day. I know that it is hard for her to wake up every day in pain.

We had to make the tough decision that Noelle will not be able to graduate in May. She has eleven credits to finish this year and she is not on track to finish any this semester. She will do her best to finish the online classes she has started. That will give her 6 credits this year. She will finish the rest in the fall. It would be great if we could arrange for her to take Chemistry at the community college this summer. Since she wants to go into nursing Noelle would prefer to take Chemistry in a traditional classroom and not on line.

We thank you so much for your prayers. We continue to need them!

LONG week

We have had one of the longest, hardest times of my life. Monday morning Noelle was in more pain than usual. We were considering going to the ER just for pain management when she had what I would call a seizure. Her entire body seized up and she was uttering unintelligible sounds. I called my mom to meet us at the ER. Scott was hunting. I went to the car and got the wheelchair and put her in there. I wasn't sure how I was going to get the wheelchair out of the house. We do not have a ramp and have a few steps out of all entrances to our home. She had a small break in the spasms and was able to walk to the car. When we got to the ER her condition was bad enough that we skipped over all the waiting people and they took us to a room. It is always a risk when you go to the hospital what reaction you will get when you mention Lyme. We were lucky to have a doctor that was OK with that diagnosis. They were able to give Noelle muscle relaxants, pain relievers and anti-nauseau. A huge answer to prayer was that they were able to get her IV and blood draw on the first attempts. The IV was even done by a EMT student! They also did a CT scan. The CT was clear and they were able to calm her spasms but they could not get her pain under control. Noelle was admitted to Covenant Hospital.

Noelle had a surprise visit from her good friend, Kaylee. Kaylee now lives in Kansas City but had to return to Waterloo for a family emergency. Kaylee was recently diagnosed with Crohns, so she has spent some time in the hospital herself. When Noelle saw these pictures on her phone she did not remember them. Tuesday was an exhausting day for her.

Noelle loves cupcakes, so she loved this flower arrangement that Grandma Mary brought. Especially since it features pink flowers, her favorite, and a LYME cupcake base!

Throughout Tuesday Noelle had almost non-stop episodes. It was terrifying. All of the nurses were fantastic and cared for us like family. Noelle's pediatrician was very accessible and brought in a neurologist. They did an EEG which appeared to be clear. However, the neurologist observed an episode and suggested that if the muscle relaxants were not working by the next day that we be transferred to Iowa City where they have a pediatric seizure unit. So on Wednesday she was transferred to Iowa City by ambulance, lights and sirens. Once again we had answered prayer. Chad and Laura were very accommodating as our ambulance EMT's. I was allowed to ride in the back right next to Noelle. I was so glad especially when she had an especially bad episode that lasted the remainder of the trip, throughout the Iowa City lobby and halls, and into one of the rooms.

When we reached Iowa City our frustration was pushed to a whole new level. Our doctor had pre-arranged for this transfer. We expected her care to continue seamlessly, that was not the case. The ambulance drivers had to remove her pain relief and fluids. She was not reattached to pain control for three hours!!! During this time she had multiple episodes in front of nurses and residents. All anyone wanted to do was talk about her situation. It was so awful. We both felt like we were suffering from PTSD by the time her pain and spasms were somewhat controlled. When we finally met the actual pediatric specialist, not a resident, we did like her. And she worked well with Noelle's Lyme diagnosis. She even commented that Noelle's situation revealed chronic Lyme, as Noelle received a CDC positive test result long after any known tick bite or exposure to ticks. She elected not to involve the infectious disease department since Noelle was already under care by a Lyme specialist. This was great for Noelle's immediate care, though we have had people suggest that it may have been a good thing for the Lyme cause as a whole if her case had been researched by them since she has a positive CDC test. We just did not want her used as a guinea pig, especially when she was in so much pain!

The communication in Iowa City was very frustrating. I am sure that is because it is a teaching hospital and every decision has to go through teams of people. Other than our original problem receiving pain control we had other incidents of miscommunication. They decided to do another EEG. The technician told us it would be on for 24 hours. After two hours they came and removed it leaving us with many unanswered questions. Had the results proven or disproved something? Especially scary when the word Epilepsy was being used often.

The other big issue was the MRI. One of the reasons we were transferred to Iowa City was to get an MRI. Our local hospital was having such trouble controlling Noelle's spasms that they were unsure that they could keep her still for a MRI. The doctors in Iowa City went back and forth about when and if we were having a MRI. Early Thursday Noelle's IV came out. Iowa City had a hard time even drawing blood on Noelle. They ended up "scooping" blood as it dripped out of her. They decided to put in another IV to do a contrast MRI. We were also assuming it was to resume IV pain control. They did end up placing an IV on the second attempt. She never received more IV pain control. AND....she never got an MRI. Eventually a neurology resident evaluated Noelle. She, finally, told us that the EEG revealed that Noelle's brain activity was not affected during her episodes so they were not technically seizures. She felt with this information and her exam it was unnecessary to do an MRI and we could be released. (Remember this is why they put in the second IV.) So we prepared to leave. Noelle was past ready to go home despite her continued pain and spasms. I tried to be reassured that a MRI would reveal nothing new. As we were preparing to leave the actual neurologist appeared and repeated Noelle's exam. It was just crazy!!

So we returned home Thursday night. Noelle has continued to have episodes and lots of pain. Yesterday one of her episodes lasted over an hour and a half. It is miserable for everyone!! She has not had one yet today though she is in horrible pain. Please pray that we are able to find the correct treatments for this horrible disease and her new symptoms.

While Kaylee was helping Noelle to enjoy a little normalcy they made this great video. I cannot get the video to load correctly. Here is the link:

http://youtu.be/WsuIdJZVY0I

Boo!

We had a fun Halloween! After school the girls carved pumpkins. Then chili for dinner. Note to self...the kids don't like chili:/ Noelle and I took Sabrina trick or treating. Teme went with friends. Later Noelle and I switched with Scott. Noelle has been in a lot of pain lately so I was glad she was able to go for a while!

Please click the widget on the right to find out more about Lyme disease. Please help support funding and the spread of accurate information!

We all had a fun night at our church's Fall Festival Wednesday night. Sabrina and a bunch of her friends ran around from bouncy house to bouncy house. Teme had a bunch of football friends there and Noelle and her small group painted faces.

Breast Cancer Walk

Noelle and I did a 5K walk on Saturday. Noelle walked the first 25 minutes, then rested for a while in the wheelchair, and finished it up walking! By far the furthest she has walked in some time! We had a lot of fun! And felt great honoring and raising funds for such a worthy cause. We love you Diane Waychoff (our next door neighbor) and Char Christian (mom to Teri, my best friend in junior high)!

WHY???

I'll be honest in the last three years I have asked that question a lot. Most of the time my inquiries are addressed to God.

Why is there disease in the world, especially Lyme disease?
Why is Noelle so sick?
Why doesn't she get better?
Why when we were obedient concerning adoption have things been so difficult for our family?
Why when there are little things we have prayed for Noelle has the answer been no so often?
WHY, WHY, WHY?

Obviously these are my personal selfish whys. If I go beyond the walls of my home, even just as far as our extended families, the list grows and grows.

Our church, Prairie Lakes, for the second fall is doing a church wide study. We are taking the challenge to read the New Testament between now and Thanksgiving. Most of those that have committed to the challenge are meeting with a small group to process the readings and our personal journals.

The first week that we met our group struggled with these questions, especially in relation to an exhibit on Human Trafficking that we were discussing. Two things hit me hard.

**When we ask why, we are doubting God' goodness!
**Focusing on why is a tool of the devil!

I think both of these comments were raised by a woman quoting her son after he lost his four year old child! Wow! I have so far to go.

Lord, help me to believe in your goodness. No matter what my circumstances. Help me to believe in your goodness and your love for Noelle. Amen. So be it!!

Senior pictures!

Isn't she beautiful?! Noelle's senior pictures turned out amazing. The day of, the weather was good and her energy lasted just long enough:) Almost every single proof her hair and face was stunning so it made selection difficult. These are the only pictures that the photographer has publicly posted. She had some wonderful ones taken near the Emergency room sign since she wants to be a Pediatric ER nurse! Beth Burrell at Element Portraits did an outstanding job!

In the news, again.

Someone You Should Know: Temesgen Larson

Apparently a number of people submitted Teme's name for this clip. It is too bad they didn't get better footage of him playing. He truly is amazing. He has caused numerous fumbles. We are proud that he is appreciated by so many people.

Hoover Hawks

Teme is playing seventh grade football for the Hoover Hawks, and it is a trip down memory lane. Jake also played for them. In ninth grade, I was a cheerleader there. Wow.

Things are not going as well as we would like with Noelle's Lyme symptoms. Since taking out her PICC line in August her symptoms have worsened. Which means that IV antibiotics were definitely helping. We may have to reconsider that at some point. Though Noelle says that it is easy for me to say:/ She is currently not on antibiotics. We are trying a couple of new things. She is getting Onamed treatments. If you are interested in an explaination, there is one at this site, http://innermedicine.com/viewpage.cfm?pageID=18. She will receive treatments twice a week for about an hour each session.

We are also trying a Silver and Aloe protocol. The aloe will help to heal her stomach. Silver is said to kill the bacteria. The key to this will be our consistency.

A few months ago we felt the need to start searching for a new primary care physician. The primary care person we have counted on for a long time expressed a distrust in Noelle's diagnosis and in her treatment. We were not comfortable continuing to see her. I am happy to say that after a couple months of not knowing what to put when it asks our primary care physician, we have a new doctor!! Dr. Angela Townsend is actually a friend of our family's from church. She is a pediatrician but is able to treat Noelle as long as she is a student. We had our first appointment the other day and it could not have gone better! She is concentrating on Noelle's inablility to get decent sleep first. She is not awake yet this morning, but yesterday she slept over 12 hours! And no nightmares.

Due to her worsened symptoms school attendance has been a factor. Yesterday we met with her advisors and dropped all but one traditional class. She will attempt to make it to school each afternoon for Chemistry. This is important to her both because she likes science, and because she wants to be a nurse. All her other classes will be online and she will mostly work from home. I am praying that this change will relieve some of her stress.

Thanks again for your prayers.

Mandisa - Overcomer

Family time

Last night we had a very successful family outing. Scott and I were so excited. We drove in one car! And except for a tired six year old everything went fantastic. We mini-golfed and drove go karts. Then we went out to eat and enjoyed a great gluten-free menu and a few bites of non gluten-free desert. Can you say red velvet cheesecake!

Hot yoga

In my continued pursuit to find weight loss, exercise and a little me time, I have started going to hot yoga. And when they say hot, they mean HOT!! The first time I think I left class 3 times to try and cool off. I have since discovered that there is a big difference in instructors, both in the temperature and in the difficulty of the class. I am frustrated that I have not lost any weight yet but I love using my body and feeling some of my strength return.

Back to School

And so it begins again! August 22 (coincidentily our 26th anniversary) Noelle and Teme went back to school. Noelle is a senior!!!! And Teme is in 7th grade. That day also took Jake back to Iowa State after a year hiatus. The 26th saw Sabrina starting first grade and Jake starting classes.

We covet your prayers, as usual. Noelle's schedule is very heavy for her. She still wakes up with nauseau and a headache almost everyday. We are still seeking more answers health-wise. But in the meantime she has 3 traditional setting classes and 3 PBDA/online classes. Six hours of class is a lot for her weak body. She accomplished so much this summer, I know she can keep up the great work!

She took her first college course, her CNA class. She passed with an A!! She will still need to pass the state liscensing exam in the next couple months. This is the first step in her journey to become a nurse. It is required to be admitted to nursing school. Last night she wrote her essay for her admission to Allen College. She will be pursuing her BSN which will include 2 years at a community college and two years at Allen.

Teme's academic life may look a little different in the future as well. At the urging of his teachers we had Teme tested for learning disabilites at the University of Iowa. Teme was diagnosed with an intellectual disability, so eventually he will transition from ELL services to special education services. We will be meeting with his school next week to go over the official report from the U of I. This is a whole new ballpark for us. Please pray that we can navigate these waters successfully and always be good advocates for Teme. As I watched him leave football practice the other night I was struck again by how well liked he is. His ELL teacher has been able to observe Teme outside the ELL classroom this year. He said, "I wasn't that popular in middle school!" We have a fairly steady stream of boys that come over to our house to play basketball with Teme. I just pray that his learning difficulties never interfere with his friendships or his athletics.

Jake had a successful first week at school!! He has a tiny dorm room in an upper classmen dorm. His roommate is a noncommunicative recent immigrant. Quite a shock, I think, for Mr. Social. He is talking about running for dorm president. He said, "It will look good on my resume." I said, "who are you?" Kidding. He was very successful in his year off working at HGS/Toro. He was promoted to Team Leader and was interviewing and training new employees. When he left his bosses encouraged him to come back as an intern next summer. I pray that God inspires him with a course of action for his life. I pray that God gets a hold of his heart! I pray for a fantastic Christian Mrs. Hoss some day.

Then there is Chatty Kathy, I mean Sabrina. This morning she did not want to go to school because it is boring. It is going to be a long 12+ years. She missed two days last week with a fever and we are struggling to get her make up work done. She just is kind of a complainer right now. I just hope I am not modeling that. I need to project joy. There was some discussion about Sabrina repeating Kindergarten. I pray that we made the right decision. She has just 11 kids in her class, nine girls and two boys. I would certainly think the small class size would be an advantage.

Well, that is the back to school update. Have a great year!