Last Plasma Exchange

Taylor had his final Plasma Exchange this afternoon. He is sore from bruising, but everything went well. After the exchange, we met with the MS specialist. With the conclusion of Taylor's treatment, there are some positive outcomes but little visual improvement. Taylor's headache has decreased slightly. The numbness and tingling in his hands and feet have decreased. Also, Taylor is seeing the shade yellow in his left eye instead of dark gray or black.

We should be home Friday, weather permitting. The MS specialist basically advised us to keep close track of Taylor's condition but has yet diagnosed him. We will meet with a recommended MS specialist in Oklahoma. The doctor basically has said that Taylor's symptoms look and smell like NMO (neuro mylitis optica) Spectrum Disorder but there is not enough evidence to diagnose him. He also said that Taylor could have one spell and never have another, or could have more. So we need to keep track of what happens with his health.

We continue to stay positive and pray that Taylor's vision will be restored. This has been a long, grueling process, especially for Taylor. Our stay in the freezer known as Rochester, MN may be over for now, but Taylor still has a long road ahead of him.

Plasma Exchange #6

The sixth Plasma Exchange went very smoothly today. Taylor is beginning to bruise around the areas where he has iv punctures. Other than that he is doing well. Still no significant vision changes other than the shade of yellow in his left eye. We will meet with the Neurologist Wednesday after his final treatment.

Please continue to pray! Thank you.

Plasma Exchange #5

Taylor's fifth Plasma Exchange went well today. Morgan, Chris and Victor went with us to his treatment. They were very intrigued by the machine used during the procedure. They asked alot of questions and enjoyed learning about the process.

Taylor is no longer taking any medication for his headache. On a scale of 1-10, it is at about a three. This is a dramatic improvement! Taylor's headache use to be a nine or ten even after taking narcotic medication. He is still seeing yellow and has not noticed any other vision improvements. He seems to be doing well.

The remainder of the day was spent resting and playing cards. We had a lovely Italian dinner at a small restaurant down the street.

Again, we cannot thank you all enough for the support!

Friday

Thursday morning, Taylor began fasting. He was preparing for his colonoscopy Friday at 6:45 am. Everything was seemingly normal. Taylor started drinking the half gallon of colon cleanse fluid. The only way he could get the disgusting liquid down was to take it like a tequila shot. Needless to say neither of us slept Thursday night. When 4:00 am rolled around, Taylor had to complete the rest of his liquid. The combination of a sleepless night, nasty liquid, and early morning hours resulted in Taylor getting very sick. We managed to get to the colonoscopy and the appointment went smoothly.

After his colonoscopy we came back to rest for a couple of hours and then back out to another appointment. At 12:15 he had a ct scan appointment. Remember, Taylor still has not eaten since 11 am the previous day and no water since 5 am Friday morning. At the ct scan he has to down three bottles of Barium to highlight his organs. At this point Taylor is miserable and on the verge of opting out of the scan. Taylor found the strength to get the Barium down and the ct went well.

Right after the ct, we went to a doctor's appointment to hear the results from the colonoscopy and ct. The doctor said everything looked good but Taylor has a two inch section of Crohn's in his small intestine. He has started to take medication to help.

After a very long day at Mayo, we wheeled Taylor back to the room to rest. Low and behold, Vic, Morgan, and Chris were waiting for us in our room. Awesome surprise! We rested for a little while and then enjoyed a delicious steak dinner paid for by Bank2. (Thank you work! It was delicious and we are very grateful!)

So the day started horribly but ended well.

THANK YOU

We truly want to thank everyone for the support and encouragement. We could not do it without you. You have spread the word about Taylor, set up blood donations, and prayed around the clock. The response we have received is amazing. Friends of friends are gathering to donate in honor of Taylor. We are deeply touched by these acts of kindness. You keep us optimistic. We cannot thank you enough.

We love you and god bless!

Plasma Exchange #4

Today was quite an eventful day. Taylor went to visit the Gastrointestinal doctor about his Crohn's. The doctor explained there were various kinds of medications that heal specific parts of the intestines. So if they can locate the exact spot of the Crohn's, they can give him a specific medication that will not affect the rest of his body. This is good! Some of the medications shut down the immune system but help the Crohn's. That is why it is important to localize the Crohn's.

Bright and early tomorrow morning Taylor has a colonoscopy. Later in the afternoon he has a ct scan of his lower abdomen. He can not eat until 3pm Friday afternoon when all tests are complete. Not fun, but the doctor's should find all the information they need.

Also, Taylor had his forth Plasma Exchange today. It went well. He is now seeing the color yellow in his left eye versus dark gray/black. We are assuming this is a sign of improvement. Yellow is better than black! He is getting tired of being poked and prodded, but really wants to get better.

We pray that his health and eye sight continues to improve.

OKC Blood Drive

My mother, Janet Helms, has planned a blood drive at her office. Below is the date, time and location.

Janurary 22, 1pm-5pm, Keller Williams NW Office 5629 N Classen, OKC, OK 73110, 405-948-7500

If you have any questions please leave a comment and I will answer within the same day.

THANKS!

Plasma Exchange #3

Around 2pm today, Taylor had his third Plasma Exchange. Not so smoothly this time. The nurses tired the iv twice before they got it in his left arm. Not only was it painful for him, but also difficult to watch. When both iv's were in, the procedure continued without problems.

Taylor's eye sight has yet to improve, but his headache is slowing weakening. Yay! We are staying positive and optimistic. Three down, four to go! Wednesday is a free day. No appointments, procedures or treatments! Time to "live on the edge" as Kim would say.

Casino anyone??

EMG

Today, Taylor underwent a procedure called an EMG (Electromyography). This tests the electrical activity of his muscles and conducting function of the nerves. He has been experiencing numbness and tingling in his hands, calfs and feet.

The procedure is not easy or pleasant. The EMG involves sticking needles in particular areas of his arms and legs. The doctors then send shocks to the needles. Sounds like torture, but he lived!

We proceeded to treat Taylor to a steak dinner this evening.

Results from the EMG should be in this week.

Blood Drives

"One pint of blood can save up to three lives."

Several people have contacted us wanting to know what they can do to help.

Our answer: pray and give blood.

Taylor is receiving human plasma during his treatments at the Mayo Clinic. For this reason, family and friends have organized a few blood drives in Taylor's name. Below are dates, times and locations of the current drives.

Janurary 14th 8am-4pm: Drumwright, OK, Career Tech, located in the Seminar Center

Janurary 26th 10am-2pm: Stroud, OK, Sac and Fox Nation, Merle Boyd Center

We are waiting on more information from the First Christian Church in Edmond. They are also organizing a blood drive.

If you would like to donate blood, but cannot make it to one of the planned events, you may donate at any local OBI donation center. Just remember to let them know you are donating in Taylor's name.

We encourage everyone who is able, to donate. Blood donation is a small gesture that can make an incredible impact on the lives of others. It is a selfless act that pays it forward.

Thank you!

Plasma Exchange #2

Taylor just finished his second treatment. It went smoothly. The process if very tiring for him. His arm/vein twitched a few times. When the suction is withdrawing the blood sometimes it bumps up against his vein and gets stuck. Kind of like putting your hand over a vacuum hose, it stops the suction. The nurses say this is normal, nothing to worry about. They slightly readjust the needle and continue the treatment.

We found out today that the plasma replacement that is mixed with his blood and put back into his body actually IS human plasma. It is not straight plasma but a combination of plasma and a substitute. A little confusing...but we are figuring it out!

Also, there will be several blood drives this next week in Taylor's name. I will post more information when I receive it from the people coordinating it.

Plasma Exchange

Taylor is currently undergoing a treatment to improve his vision and possibly help his headache. He will receive 1 treatment every other day for 7 treatments. Each treatment is approximately 1.5-2 hours long.

During his Plasma Exchange, Taylor is hooked up to a machine. with one iv in the right arm and one iv in the left. As the machine sucks his blood out of one arm it mixes with an anticoagulant and saline. While in the machine, his plasma is separated from his blood and replaced with a plasma substitute. This mixture then returns to his body. With this, his body should produce new and health antibodies to heal his optic nerves. His current antibodies are attacking his optic nerves causing swelling, resulting in loss of vision. Taylor's first treatment was yesterday, 1/8/10. His second treatment will be tomorrow.

We are hopeful the Plasma Exchange will improve his vision and remove his headache.

More information about Plasma Exchange:
http://www.cidpusa.org/plasma.html

Bilateral Optic Neuritis and Crohn's Disease

Currently, Taylor has two conditions that involve separate treatment.

1. Bilateral Optic Neuritis. Which is the formal way of saying, Taylor has vision loss in both eyes. Towards the end of October Taylor began having severe headaches. Although they were abnormal, he continued his regular daily routine and work. About two weeks later he woke up one Sunday and could only see partially out of his left eye. We both were concerned but did not make a big deal and thought it may go away throughout the day. It did not. His vision increasingly worsened along with his headache. We contacted our Optometrist who examined Taylor and referred us to the ER and an Opthamologist. Throughout the month of November and December Taylor met with many doctors and spent a total of 10 days in the hospital. He has received both oral and iv steroids. The doctors in Oklahoma have tested for many things from MS, Lupus, Leber's to exotic diseases he could have picked up in Mexico. All have come back either normal or negative. Which is good! But Taylor is still in pain and cannot see.

2. Crohn's Disease. About two and a half years ago Taylor was diagnosed with Crohn's. He took a few samples he had received from the doctor but did not continue medication when the sample was gone. Since then he has had stomach problems and bowel issues. It is safe to say he has just lived with is bowel problems and hadn't thought much about treating it. Well, now it is an issue.

Basically Taylor has two problems, Optic Neuritis and Crohn's. They could be related because his inflamed optic nerve is caused by an autoimmune disorder, or could not be related. But both need separate treatment.

Here are a couple of website that will help explain things better:
http://www.mayoclinic.com/health/optic-neuritis/DS00882

http://www.medicinenet.com/optic_neuritis/article.htm

http://www.mayoclinic.com/health/crohns-disease/DS00104

http://www.medicinenet.com/crohns_disease/article.htm