Double the Blessings

Two little treasures were given their names and blessings today; each by his/her father and encircled by men of great significance in their lives. 

Aiden was blessed first at 9:00 am in Michael and Desiree’s ward in Pleasant Grove. Adalynn was blessed at 1:30 in the afternoon in Audrey and Matthew’s ward in Orem.

Certainly a beautiful day to remember and a significant day for me. All five of my children were together. That doesn’t happen very often anymore. 

So sweet of you to make such an effort to be here, Jenni and Emily!

Witches Night Out

Aiden and Adalynn shared their blessing day on October 14. Jenni flew from Seattle and Emily and AJ from Virginia to share their love and support for the special occasion. What a treat to have them here!

Katie invited us to join in her mother/daughter/aunt tradition and attend Witches Night Out at Gardner Village. We dressed up for the enchanted event and had a blast.

"Are you a good witch or a bad witch?"

Wizard of Oz

Grape Juice Day

I invited Evylee and Ethan to spend the day with me. I hadn’t had the opportunity to help Dez out much since Aiden was born and figured she might enjoy a day alone with her new little one. I became a bigger help than anticipated as Aiden had a high fever and ended up in the hospital.

Evylee and Ethan and I picked the very ripe and ready Concord grapes in my backyard. They smelled so good on the vine; Ethan figured they must taste good too. He ate about as many as he contributed to the bucket - seeds and all!

We picked two big buckets full, harvested them off their stems and produced 10 jars of concentrated deliciousness! 

Each year I wonder why I go to all the trouble -- until I taste the finished product. There is nothing like it!

It's Baby Time Again!

Introducing - 

Aiden Kent Collier

Born September 13, 2012

To Michael and Desiree

8 lbs. 3 oz.

Desiree was induced a week before her due date. It took about 9 hours for her to dilate completely, but when she reached the magic number she pushed for just 7 minutes and there he was! 

I had a terribly hectic day; it was SO frustrating to be too busy to be at the hospital - Symphony rehearsal in Salt Lake in the morning, recording session in the afternoon in Alpine, and a Symphony concert in Ogden that night. Michael notified me of Aiden’s birth just minutes before the concert began. I had some difficulty focusing on what I was doing, that’s for sure! I called as soon as I was out. I was so envious of Potts who was there at the hospital holding him in his arms! By the time I returned to Sandy, it would be 11:00 pm!

Friday morning, I drove straight to the hospital as soon as I was finished with my early-morning  Coil MRI (which I didn’t have to finish because of technical difficulties. YIPEE!) Aiden was WIDE awake in his daddy’s arms. He is beautiful and healthy and perfect! Lots of darkish hair -- he reminds me of Michael when he was born. I cuddled with him for the next hour or so and he fell asleep in my arms.

Jenni’s baby is next; I have to wait an entire three months for her! I’m kind of in a grand baby mood. This is so much fun!

The Chosen Name

Adalynn Julienne Taylor

Adalynn comes from the Germanic root "Ada" which means "noble beauty."

Julienne is the name of one of Audrey's treasured grandmothers -- my mother.

Thank the Little Critters

My first four pre-filled syringes of Avonex were shipped to me overnight, refrigerated in a small styrofoam cooler. Nurse Annette came to the house to show me how to inject myself. 

It certainly is a small world. We actually recognized each other. She is the former wife of a photographer in town. 

She explained the injection process to me, then had me practice on a piece of leather stretched onto a brick-sized object.  I didn’t even hesitate when it came time to inject it into my thigh muscle. I was afraid that if I did, I would chicken out. The one-and-a-quarter-inch needle slipped right in, I gave myself 1/4 of a dose, counted for three seconds and pulled it out. It was pretty simple really.

Side effects were to happen in four to six hours and would last for twenty-four.  Fever, muscle aches, chills, the shakes. With only 1/4 of a dose, maybe they would happen, maybe I would be lucky. 

I was lucky... THIS time.

So what is Avonex anyway? Avonex is an interferon beta produced using genetically engineered Chinese Hamster ovary cells into which the human interferon beta gene has been introduced. Who in the world thought of using Hamster Ovaries? At any rate, this medication should slow down the progression of MS and reduce the number of exacerbations or nerve myelin attacks.

So...

Thank the Little Critters!

My Baby Girl has a Baby Girl

Audrey was overdue by nearly a week - quite a surprise for her little body. She was way more calm and patient than I would ever have been. She wanted her little babe to come when she was good and ready rather than having to be induced.

She went into labor on her own Tuesday PM. She and Matthew spent the evening walking from store to store and visiting friends. By the time she ventured to the hospital, her contractions were only a minute a part. I thought, “This won’t take long at all.” -- but by morning, she had dilated only to a 5.5. They gave her a little pitocin to help her along and by 11:00 Wednesday morning, she was dilated fully and would begin to push.

I waited and waited to hear word.... nothing. Want to know how to make a mother crazy? I jumped in the car and headed to Provo, figuring that I would receive word on the way. I sent a text to Matthew, “Is everything okay?” and awaited his reply.

Finally, from Matthew, “Audrey pushed at a 10 for over three hours. The  baby’s head wouldn’t go through the pelvic area. They resorted to trying to turn the baby and then use forceps. That didn’t work. We are now going into a C Section.”

That was after 2:00. Again I waited and waited, trying to occupy my time and and my mind in various ways. Certainly it won’t be long.....

At 4:00 (that’s two whole hours later! What C-section has ever taken 2 whole hours?!) I couldn’t bear it and did some sleuthing on my own. I went up the elevator to the mother/baby floor. I couldn’t enter without a code, but I asked the attending nurse, “Has Audrey Collier been assigned a room?”

“Yes,” was the reply, “But I can’t let you in without a code.”

I knew that. But at least I now knew that Audrey was ALIVE. So I sent Matthew another text, “May I come see you?”

He answered, “Audrey said in just a bit. I just got back with her and she is breastfeeding right now.” That meant the baby was ALIVE too! I let out a sigh of relief  and called Potts. 

I had SO many unanswered questions:

“Is the baby okay?”

“What does she look like?”

“How much did she weigh?”

“Can she open her eyes?” (If you will remember, Audrey was born with a chromosome disorder called blepharophimosis which effected her eye openings. There is a 50/50 chance that her own children will have this condition also) Of course after having been through three plastic surgeries with Audrey, my heart would wonder.

At 4:35, “In 15 minutes, you can come to room 431 on the 4th floor” and he gave me the code. Little did he know that I had already been up to the fourth floor. :o)

I had held my breath since 5:00 am, yet this fifteen minutes were the SLOWEST I had ever experienced!

FINALLY it was time. I went up the elevator, gave the code, walked down the hallway, and knocked lightly on door 431. Audrey said sweetly, “Come in.”

Audrey and Matthew greeted me with smiles on their faces. And their beautiful baby girl was sleeping contentedly in her bassinet. She is healthy and whole and beautiful! 

I held her, cuddled her, and smelled her newborn sweetness. Such a miracle!

 Baby Girl Taylor - 2 hours old. (They haven't decided on a name yet.)

Born 2:53 pm, September 5, 2012

7 lbs. 13 oz.

Congratulations to the Three of You!

Why Is It?

So why is it that we load the car with the necessities for living and leave the comforts of home to play house in the “wilderness”? We pitch our tent in the dirt and share our living quarters with bugs and squirrels. 

We chase off a raccoon who runs away with our garbage sack in his mouth, and spot a snake right next to our tent door (okay, granted it was just a little tiny garter snake, but it was STILL a snake). 

We wear the same clothes, void of all cleanliness, for three days, and wash our dishes in lukewarm semi-clean water. 

The “bathroom” is only a quarter-mile hike down the road.

 Torrential rains soak our tent, thunder and lightening keep us up all night long, little drips play Chinese Water Torture on our heads and we declare that it was, “Exciting!.” 

I'm not sure why we do this. 

All I know is that I can't wait until we can do it all again.

Dreams

Two nights ago I dreamt it was the first day of my freshman year of college. I couldn’t find my psychology class in room Z6 for the longest time! I was certain to be tardy. 

I FINALLY located it outside of the building in a nursery-rhyme-type little red three-story house filled with wrapped candy and a little stream nearby. It was taught by Elton John??  Elton John has NO RIGHT teaching a psychology class!

Last night I had another dream. I was invited by my elderly friends to the Senior Citizen Center for a series of lectures on LACTATION? What were the men doing there? In fact, What were ANY of us doing there? We planned to sun-bathe after.

In Potts’ words, “And you aren’t even on drugs yet!”

If I Can't Knit It, You Don't Get It!

Received this in a message from my son-in-law, Joe, today --

And you wonder where we got our new bikes!

The Clinical Study

Purpose of the Clinical Study

• To find out if special diagnostic tests improve the ability to predict  the outcome after a patient with MS develops acute optic neuritis. 

• To find out which clinical tests, and which parts of MRI tests best predict outcomes in patients with MS and optic neuritis.

• To make it possible to more quickly and easily evaluate the usefulness of new drugs for the treatment of optic neuritis and MS.

Cast of Characters

Me - Yes, by some miracle (another one), I have been accepted into the clinical study. The pharmaceutical company has agreed to help out with the medication for the two years (a whopping value of over $104,000.00). After that point? I figure we will just have to cross that bridge when we come to it. 

Dr. Kathleen Digre - Dr. Digre is a Professor of Neurology and Ophthalmology at the University of Utah School Of Medicine.  Her list of awards and credentials is a mile long. She is brilliant and kind and forth-right. She scurries about the Moran Eye Center with a gaggle of med students following closely behind. She is the doctor who encouraged me to take part in this study and is my personal doctor.

Dr. Bradley J. Katz - He is a  Neuro-Ophthalmologist also. I haven’t yet seen the face behind the name, but I hear it a lot. He is the one who designed the clinical study. It is said that he is tall and handsome and that I am sure to meet him someday.

Barbara Hart - Barbara is the coordinator of the clinical study and literally takes me by the hand from place to place. At this point, I am her one and only participant (they hope to have 10) so we are both learning as we go.

Two Clinics full of other doctors, nurses, lab technicians, students etc. I’ve met SO MANY that I can’t come close to mentioning them by name, but they have all been very kind and attentive.

Like Dr. “Don” for instance. He administered my first test, the VEP or Visual Evoked Potentials. Dr. Don seemed a very eccentric man who talked a mile a minute. It was 9:00 am when I saw him and he admitted  that he had already downed four cups of coffee. He was VERY impressed with the fact that I was only one of four female patients out of thousands in the past 40 years who placed my purse on the hard chair instead of the soft one! (What?) He mentioned the majority place their bags on the soft chair leaving the hard one for their spouse. I found out from one of his co-workers that he used to raise a colony of albino cats at the V.A. hospital. Does this spell E-C-C-E-N-T-R-I-C?

Dr. Don explained EVERYTHING as he placed electrodes on my earlobes and on a particular spot on my scalp above the part of my brain that processes vision. As I watched a checkerboard of black and white squares switch back and forth, an electric signal was generated by my brain producing an image like this:

This chart shows that my left eye (below) produced a signal slightly slower than my right (above). He also noted from this chart that I have an unusually symmetrical brain. No surprise there!

The other tests (lasting in total about six hours) included loads of eye charts, tests for central and peripheral vision, and an ophthalmic exam with my eyes dilated. Oh, and millions of photographs of my eyeball with two types of dye injected into my veins, one of which made my skin yellow for a time. I looked down at my bare feet, and they were YELLOWish! 

By the way, my left eye proves to be doing MUCH better.

You'd think that just one time I'd remember
 to bring my own sunglasses so
I wouldn't have to sport these beauties!

Barbara, also administered a series of neurological exams to measure the severity of MS. I walked as fast as I could for 25 feet and left Barbara in the dust; and was way above average in the finger dexterity and cognitive tests. Barbara stated, “You like to do well, don’t you?” 

Hmmm.... Do I smell an overachiever?

They drew eight more vials of blood for DNA and genetics testing. They will also study the presence of biomarkers, proteins and other substances in the blood that may indicate how my body responds to optic neuritis and MS.

Coming up? An Optic Nerve MRI, a visit with an MS specialist, and a once a week injection of Avonex (the liquid gold drug of $1000.00 per shot.) They are having some difficulty scheduling these.

I Can't Sleep

It’s 1:30 am. I have a lot on my mind. I received a call from Dr. Digre yesterday. For some reason she went from -- I “might have” MS to -- she’s “pretty positive” I have MS. She would like me to participate in a clinical study for Optic Neuritis and MS. Only problem is - to be a part of this study, it is required that I take the medication AVONEX which does not cure MS but may decrease the number of flare-ups and slow the occurrence of some of the physical disability that is common in people with MS. It is approved for use in people who have experienced a first attack and have lesions consistent with MS on their MRI. (I guess that’s me.) 

MS is a life-long disease that affects the nervous system by destroying the protective covering (myelin) that protects the nerve fibers.

This medication just happens to cost $4000.00 a month AND it is NOT covered by our insurance plan!! That’s about all we MAKE in one month! It is not paid for by the study because it would be prescribed for me anyway and supposedly I would need to be on it for the rest of my life! 

The possible side effects of the drug are frightening. 

So I have some questions:

When do the benefits of this drug out-way the possible side effects and staggering cost?

Do I wait until I have another attack before I believe the doctor and take the medication?

Why in the world do I have such costly health insurance if it isn’t going to help me when I need it?

How in the world am I going to be able to afford to take this drug which just MIGHT help?