Monday, August 31, 2009

A Few of My Favorite Things...

Life is getting better and better every day. Oh, of course I still have many "post-brain surgery" issues I am dealing with, but everyone has a few quirks, and I am no different! I still am not normal, but then again, I never was "normal" to begin with! :)

As the summer comes to a close and the new school year begins, I can't help but think about how much I love this time of year. Because I missed so much of the summer while I was in the hospital, I think I am even more grateful this year for the great moments I did have this season. Please allow me to indulge myself by recalling a few of my favorite things from this summer... (You will see that most of this list includes not "things" but people and experiences. I have definitely concluded that things, while fun, are not important in the scheme of things. It is the people we love and surround ourselves with that really matter.) Now, back to the list!

1. My husband is my best friend, and tops the list of my favorites, anytime of the year! He is also a great father, and as I found out this year, also a wonderful caregiver. To quote one of my dearest life-long friends, Brad White, Tolan is "one heck of a good man". I second that. Our little family is definitely a clear favorite!

2. The family I grew up in is an easy favorite, and although this isn't a great pic, I love those in the photo, (3 of my brothers, Scott, Brandon and Brett, my hubby, my sister, Tami, and my brother-in-law, Dave). I love that we are now old enough to all get along and that we all know how amazing our parents and family truly are! (Wish Tami had been looking at the camera...she is a definite favorite and a beauty!)

3. My 4 children are my favorites and I love it when they try new things! I love to watch their excitement and trepidation as they take on new adventures in life! Trenden going tubing down the river in Morgan, UT, earlier this summer was a fun adventure...I would guess this was the first of many tube rides down the river. 3. (Continued...) Casen right before his first soccer game on Saturday (giving me the ultimate "thumbs up"). 4-year old soccer has got to be one of the cutest things in the world to see! Watching as he stood on the field and put his arms in the air and said, "what do I do, Mom?" was another super cute moment.

3. (Continued...) Daven on his first horse-back ride on Saturday at the Seibert's house in Mountain Green. He LOVED it and we couldn'tget enough of his huge grin! Daven's smile and darling laugh are definitely some of my favorite things!

3. (Continued...) Lindi on horseback was also adorable! Watching her grow and blossom is another favorite. :) She has been wanting to go horseback riding for a long time. Although this was just a little ride around the corral, she loved it and can't wait for more!

4. Relaxing in my backyard by the waterfall is absolutely one of my favorite things to the spring, summer and fall. Watching Casen water the plants is also a blast (we were nearly flooded out by the time he finished.)

5. Gardening is one of my favorite things, but watching Daven put the veggies in his wheelbarrow and take them around the yard is even better! Gotta love this little guy!

6. Friends are some of my favorite "things"! In this case, my good friend, neighbor and Health Care in America Contest winner, Belinda Jackson, getting her winning basket! I love all my friends, wherever they are throughout the world, and I am grateful for my good neighbors who are close enough to share in the daily triumphs and tragedies of life! Love you, Belinda!

7. New hair styles are one of my favorite "pick me up" feel-good things! (Especially since I am still missing 1/3 of my hair and more is falling out! At least a fun new do can hide all the "shaved" parts! Oh, and I love the fact that one of my young women at church told me how to do my hair this way. (A little egg white and sugar mixed together and you, too, can have curls for a day! Thanks, Emilie!)

8. Smiling is one of my favorite things, even if my smile is still crooked and drooping, I still love it and love when people smile back at me. (Or these days, give me a strange look when I smile crooked at them! It is ALL good!)
9. The first day of school is always a favorite! It means a fresh start, a new beginning, fun new backpacks and clothes and a return to the "daily schedule"!
10. Going to Church is one of my favorite things. There I can feel the Spirit of Christ and come to know my Heavenly Father and Savior, Jesus Christ, better. There I can hear great talks (like those yesterday from Rose Bell and Noah Myers) and be inspired to seek out opportunities to become like Christ, then be encouraged to REMEMBER all the wonderful things, moments and people I already have been blessed with in this life!

So much to be thankful for, my life, family and Savior, most of all. Let's all "Count our many blessings" today; it helps to start by thinking of your favorite things!

ADDENDUM: #11. Crying tears of joy is one of my favorite things! Just a few moments ago, I was eating a snack when all of a sudden I realized I was eating with the food on the right side of my mouth...and I could feel it! I ran into the bathroom and looked in the mirror to see if I could "see" the difference I could feel. No one else in the world would be able to see it, except maybe me and Tolan (since we check all the time), but there is another small part of my face, right above my mouth that I can move! Tears of joy are flowing!

Friday, August 28, 2009

Great Health Care in America -- Contest Winner!

Contest Winner Announced Below (read on)

I don't want this to sound like a political tirade or anything, but I just need to put in a "plug" for our current health care system. Yes, it, like every other system in the world, has problems, but in my humble opinion, there are many more "rights" than "wrongs". Let me illustrate with my health care story:

In a matter of only 1 month, I went from being diagnosed with an inoperable brain tumor, growing on my brainstem, to being in the hospital receiving a life-saving series of surgical procedures from some of the world's best neurosurgeons. I did not have to wait months or years to see these doctors and when they saw me, they "Saw ME" not just another patient. The men and women who saved my life and took care of me every day were part of a system of people who choose to help others because they care. They sacrificed years of their lives to receive the training necessary to help me and help my family understand what I was going through. They have earned the right to charge more than an average blue or white collar worker.

These specialists performed experimental procedures on me, when nothing else worked. They were willing to take the chances, as was I, and the chances paid off. Today, after 5 weeks in the hospital, I am recovering at home, 11 weeks after being released. I have a new lease on life, I am whole and becoming well one day at a time.

And what did all this cost me?? Not the millions of dollars that some of you may have expected but only....

That is it! Less than $200,000 and only 2 months of treatment to save my life! Was it worth it? Well, it is to me and my family for sure!

And the Winner is: BELINDA JACKSON
of Riverdale, UT, with a guess of $173,000.
(The closest guess without going over the correct amount.Hooray and congrats to Belinda! I will be bringing by the prizes soon!! Thanks to all for playing!)

Breakdown of Costs for Jodi's Brain Tumor Diagnosis and Treatment

Here are the approximate costs for the diagnosis and treatment, using 2 major health care systems and multiple doctors, specialists, appointments, hospital stays, etc.

* ~$350 per appointment for diagnosis and consultation with neurosurgeons, ENTs, Neuro ENTs (times 7)

* ~$2-$3,000 per MRI performed outside of a hospital stay (times 3)

* ~$1,500 for the full body CT scan (diagnostic)

* ~$7,500 for the initial hospitalization (including MRIs, diagnostic tests and 3 days in the hospital)

* ~$2,200 for a blood patch surgery to correct the first spinal fluid leak (after a spinal tap from the diagnostic process)

* ~$60,000+ for the first craniotomy (neurosurgeons, neuro ENT, nurses, OR time, anesthesia, etc)

* ~$2-$3,500 per day for each day in the Neuro Critical Care Unit (times 6 days, including all medications and treatments performed while in the CCU)

* ~$1-2,200 per day for each day in the Neuro Acute Care Unit (times 28 days, including all medications and treatments performed while in the NAC)

* ~$22,000 for the second craniotomoy (neurosurgeon, nurses, OR time, anesthesia, etc)

* ~$800 per lumbar drain (times 2)

* ~$14,500 for the surgery to seal the Eustation tubes and correct the deviated septum (neuro ENT, nurses, OR time, anesthesia, etc)

* ~$300 per physical therapy or occupational therapy session (times 6)

* ~$11,000 for the eye surgery (after release from the hospital)

* ~$350 per follow-up appointment with the neurosuregons and eye doctor (1st follow-up only, times 3)

Why Are Costs so Low??

Feel free to stop reading now if you don't want to hear my opinion on the subject :) but I have a theory here. Most people guessed the costs would be much higher, and even my initial guesses were off by more than $100,000 (even after seeing a few of the bills). So, why are the costs so low for so many treatments??

1. The University of Utah Medical Center (where some of my diagnostic services and all of my treatment services were provided) is a teaching hospital. Most of the time, I saw residents each day, not doctors. This keeps the costs down, as doctors were called in only when residents found a need, or directly following a surgery or during a CCU stay. So, I had a dozen "resident doctors" seeing me every single day, together using their combined knowledge and experience to diagnose and treat me. The doctors were then consulted and approved or changed treatments as needed. It was one of these residents who had the idea to check for "air on the brain" when I was at my very sickest, which ended up saving my life! No resident experience is perfect, but lots of heads together helps solve the problems and keeps costs down.

These teaching facilities also have thousands - millions of dollars in grants each year, allowing them to discover and try experimental procedures (like sealing my Eustation tube going in through my nose), train residents and specialize in very specific health care areas. (ie. Dr. Couldwell specializing in "parts of the brain previously thought to be inoperable". This explains why he was willing to operate when the 9-person team at IHC was not able to do so.) So, that is one huge benefit provided by the U and other 1st class teaching hospitals.

2. In the state of Utah, Intermountain Health Care is the primary health provider. They are a nonprofit system and have some of the lowest overall costs and best outcomes in the nation. For other systems in the state to be competitive, they must keep their costs similar to those of IHC, thus decreasing the overall cost of health care in the state. (Studies have shown this to be true and at least 3 times, IHC has been ranked in the top 3 for Integrated Health Care Systems in the nation.) It was through this system that I received my initial diagnosis, MRIs, and suregon appointments before being referred to the specialists at the U.

So, all in all, I think we have a great system (especially in the Intermountain West) and I would hate to change it too much. If a government health care system were in place, I could very well still be sick, dizzy, in constant pain, bed-ridden and waiting for appointments to see the neurosurgeons, instead of recovering happily at home!

I hope we can all appreciate the benefits of living in this great country! I got to choose my doctors, choose the health care system in which I received treatment and receive world-class treatment for an "inoperable" brain tumor! I wouldn't change that for anything! Have a great weekend and much love to all!

ADDENDUM: Several people have already mentioned that my "story" should be told to others as a demonstration of how good our health care system really is. So, feel free to send along the blog link, or cut and paste info from the blog into an email. Send it to friends, family, legislators, local representatives, President Obama, whomever you want. Just please keep the info accurate and include the link so they know the story is true. Check out Jason's comment from this post for another compelling reason why our health care system should not be changed!

Wednesday, August 26, 2009

Healthcare in America CONTEST -- Last Chance

The first few days of school for the kids have proven harder for me than expected. I was managing fine on my own when there wasn't so much running around to do, but this is a bit more challenging. Next week when my 4-year-old Casen starts preschool, I will have a better understanding of what the year will really be like. I have continued to have headaches, but hopefully they will subside as we get more settled in our new schedule. Thanks to the many friends (Heather and Kathryn especially) who have offered to help drive my kids to and from their activities. This really helps me feel like life is more manageable, and allows me to rest when needed. :)

I think we finally have all the bills from the hospital and surgeries, so the time is nearly here. If you haven't already, enter your guess for the total amount of all my bills for the tumor diagnosis/removal/surgeries/recovery process and appointments. The winner is the guess that is the closest to the total amount, without going over (think Price Is Right rules). I will announce the winner on Friday or Monday, once the bills are all totaled. The following prizes await the lucky winner: $25 gift card to IKEA, A box of Hawaiian chocolates, and a $15 gift card to Cold Stone Creamery. :)

If you already entered in July, you do not need to enter again, unless you are changing your guess. I still have the orginal guesses, but you may submit another guess if you are somehow wiser now than you were a month ago!

CONTEST: I decided some time ago to make this a fun process, rather than a painful one. This is all in good fun and will hopefully help us appreciate how good our healthcare really is, even if it does cost a bit (thank goodness for insurance). So, please base your "guess" on the following info:
* 2 MRIs to diagnose the tumor
* Multiple dr. apts. with specialists, neurosurgeons, ENTs, etc.
* 2 Full body CT scans and 2 more MRIs prior to suregery
* 2 Craniotomy surgeries, the first with 1 neurosurgeon and 1 Neuro ENT, the second with a Neurosurgeon (10+ hours of surgery total)
* 2 Lumbar drains, inserted and removed
* 4 CT scans in the hospital
* 1 Brain surgery to seal the Euchstation tube and correct a deviated septum, by a Neuro ENT (2.5 hours total)
* 34 days in the hospital, 28 days in the Neuro Acute Care Unit, 6 days in the Neuro Critical Care Unit
* 1 "Gold weight" and collagen eyelid surgery by an opthamologist
* 3 Follow-up apts (1 with each specialist)

So, give or take a few minor procedures and hundreds of shots and doses of medication, this is the basic list. It does not include my follow-up apts since the list was posted. Make sure your friends and family who read the blog make their guesses, too. HAVE FUN and GUESS AWAY!!!

Monday, August 24, 2009

Blessings and Challenges: Hearing and Headaches

This has been a very busy weekend for me and my family. Actually, it is probably just "normal" which means busy for me. It was full every minute with activities, time with friends, practices for the kids, date nights, visiting with my young women, and a fabulous dinner with my siblings whose families are here in Utah. Overall, it was great, with the highlight being my afternoon spent with my family yesterday. My siblings are wonderful (and incredibly talented and smart) and we had so much fun together. We all played Bannagrams, a high speed "version" of Scrabble. It took me a while to catch the hang of it, and when necessary, I pointed out that I am still struggling with the effects of a brain tumor, which likely contributed to me losing many rounds of the game in a row. :) Great day!

I feel blessed today because I had another little miracle yesterday. As I sat in a church meeting, watching the broadcast of a new temple dedication, I suddenly heard and felt a little "pop" in my right ear. As though a switch had been flipped, some of my hearing was restored in my right ear! It was truly a blessing! I am anxious to see if this is permanent or temporary, but right now I am enjoying the added hearing. I am still not close to full hearing in that ear, but what a wonderful blessing for now to enjoy more functioning in my ear!

The challenges continue also, as they do with all of us. The busy days last week and through the weekend proved difficult for me to handle. By Friday I had a terrible headache again (often the result of over-doing it and not getting enough rest). This headache lasted throughout the weekend, and I only had some respite when I took strong painkillers. I know this is part of the recovery process, and clearly an indication that I need to slow down, but it was still a challenge. The hardest part of all, is that today my kids started school and this "busy" schedule is going to be the norm again now. That means it will be harder for me to take the breaks and get the rest my body needs to recover. Hmm, another balancing act, I guess.

I am still learning from my challenges and blessings every day. I guess that is what really matters in the end...that we keep on keeping on!

Thursday, August 20, 2009

Fun Sights and Eye Sight (Doc Apt Update)

This week has been extremely busy, so forgive me for not posting. My kids start back to school on Monday, so I have been swamped with back-to-school activities, end-of-summer fun, church activities and a doctor's appointment in Salt Lake.

We had sooo much fun earlier this week, on Tuesday, when my dear friends Belinda and Kathryn, took us on a trip to the Clark Planetarium and the Gateway in Salt Lake. Somehow, between their two cars, we managed to transport 11 kids, a dozen diapers, juice boxes, snacks, towels, extra clothes and lots of smiling faces for the adventurous day. We got to see BUGS! in 3D at the Planetarium, then enjoyed all of the fun, interactive exhibits, including walking on the moon, being a weather forecaster, and watching the focault pendulum swing! It was grand! Then we went to the Olympic Plaza and played in the water for nearly 2 hours!! The kids ran in and out of the shooting water and had a blast! It was one of my favorite days of the whole summer! Thanks and love to Belinda for arranging it, and for Kathryn for stuffing my entire crew into her car and being our chaperone for the day. My friends continue to amaze me!!

My little meteorologists, Lindi, Casen and Trenden.
Lindi and Trenden hanging out on the moon at the Clark Planetarium.
Daven and Casen playing in the fountains at the Gateway! They LOVED it!

The whole crew, the Brown kids, Jackson kids and Mandy Bloxham.

Lindi started soccer on Tuesday, the first of our three soccer players to start practicing for the season. She also started piano lessons, so like it or not, ready or not, life is about to get crazy again. :) Trenden starts soccer soon, and all the games start on the 29th. Whew.

Yesterday I went with the young men and young women from church on a boating activity. Sooo much fun. I couldn't boat, or wakeboard or waterski, of course, but I really enjoyed visiting with "my" girls and the other leaders. The terrain was not good for me, though...uneven sand with hundreds of tree roots coming out of the ground. I had my girls take turns escorting me everywhere, so I didn't fall down and become part of the landscape. :) Even though I had on my eye patch, the wind did a number on my eye and it was bad all last night and this morning.

Beach and boat fun at Pineview Resevoir!

This was as close as I got to the water (because of my eye), but I had fun on the beach and with the youth and leaders!

Lexie, Hayden and Jalena sunbathing beauties!

All the youth playing on the boats getting ready to go wakeboarding and tubing.

My girls, Jessica, Brittnie and Olivia hanging out at Pineview beach!

Today I had another eye appointment. I had hoped there was a "quick and easy" solution to fixing my eye issues. After examining it, the doctor told me that the problems with my blurry vision, depth perception, etc. are because the collagen implant on the lower eyelid has not totally dropped into place. So, instead of having tears and lubricant "goop" drain where it is supposed to, it is pooling in the "lip" of my eyelid, right on my eye.

So, here is the choice:
1. Wait 4-8 more weeks to see if it drops into place and my vision improves. (With little to no driving, continue depth perception issues, gooping and tearing)
2. Do a minor surgical procedure to remove the excess part of my lower lid. (With no guarantee it will solve the problem, extra cost, and more recovery time and side effects.)

Somehow, I have known it would come to these 2 options. Though I would really love to do #2 and have it fixed immediately, I know that realistically, it isn't that simple. The doctor recommends #1 because it is safer, and because surgery won't necessarily fix or speed up the process (though it "could"). So, after a good cry in the doctor's office because of my continued loss of independence and good sight, I know that this is the best option. So, the wait begins again.
I've had many wonderful visits, emails and conversations this week that have lifted my spirits, and friends who have rescued me when sitters cancelled and errands needed to be run. Thanks to all of you!! (Gonzalo, mi querido amigo ;), Becky, Carol L., Noellee, Cami H., Wendy T. Brenda, Jen, Brian, Janene, are all tops in my book!)

Much love and continued GRATITUDE to all!

Monday, August 17, 2009

End of Summer (and Hair) Fun!

We returned last night from a great little trip to the Brown family cabin. It has only been 3 weeks since our last trip, but the difference was amazing. I was able to do all the activities with my family (instead of just watching) and we spent a ton of wonderful family time together! We went boating (I "hid" behind the windshield so I didn't get wind in my eye), fishing, rafting, and played with the bears! :) We played lots of fun games and thoroughly enjoyed our time together. I felt good most of the trip, with only one headache during the entire 4+ days! I did have problems with my eye because of the wind and dust, but my bedazzled patches helped with that. A fun time!

The kids got to help "feed the bears" (hide food for the bears) at the Discovery Bear Center!

Brandon and Debbie Rhoads with us in West Yellowstone. They are some of our best friends!

Me and my right hand man, Trenden. We discovered if Ihold my mouth just the right way, I can almost smile normally!! (Compare with pic below)

This is if I just smile without thinking about it, the facial paralysis is still obvious, but as seen from the above pic, when I concentrate, I can almost make it work! :)

On our trip, however, I did realize one bit of "bad" news. I am losing my hair. I had been warned that this could happen (and after all the side effects I have experienced, I should have none that I wouldn't escape this either). I don't know if all of it will fall out, as the doctor told me that depends on the person and the amount of trauma the brain experienced. But, for now, it is definitely coming out. Right now, it is coming out in strands, not chunks, so that is good. We'll see. Meanwhile, my hubby, wanted to join me :) and he decided to forgo the hair, too. We shaved his head before the trip. So, I guess you could give this family trip the title of "Hair Today, Gone Tomorrow!".

Tolan on the boat with the kids! It was such a fun time to spend with our family! (Love the new "do" on Tolan!)

My turn with all the little swimmers! (The 3 oldest jumped off the boat and into the lake!!)

I will go to my eye doc on Thursday to see if there is anything more we can do to help my eye, so I can start driving and functioning a little more again. Hopefully we will have good news! Today I feel great, the sun is shining and I think the kids and I are going to the park. Wanna come??? Much love to all!

Wednesday, August 12, 2009

Connecting, Reconnecting & Smiling Through it All!

I am truly amazed at what blessings trials can bring us. In the last few months, I have reconnected with so many beloved friends from the past...I can hardly believe all the great people I have been in touch with again, many after more than 20 years of not seeing each other! Wonderful friends from Grantsville,UT, Warrenton, VA, Orem, UT, as well as "local" friends and family here in Riverdale and other parts of Utah. You have all thoroughly amazed me with the love and support. You are all choice people and I am grateful to call you friends.

Then there are the THOUSANDS of people whom I have never Hawaii at BYUH and PCC, friends of my family from CA to Hong Kong, and the "strangers" who simply saw my story and stopped to read. You are all truly amazing in every way.

I recently caught up with my good friend, Travis, (a fantastic "culture" consultant and motivational speaker) who has also undergone some health challenges of his own lately. Strange how we now related to each other better than ever before. We both have a new appreciation for friendship, life, love, families and God.

Then there are those who have touched me through their own trials, like my new online friend, Jason. Wow...if ever someone has had health struggles, it is him, and through no fault of his own. (A minor surgical procedure went terribly wrong and he nearly he is living with the life-long consequences and complications.) He has already taught me so much about life... I hope you will take the time to learn from him, too.

Then while on a brain tumor forum yesterday, I came across a post from a very angry woman who is struggling with a tumor. I can relate to much of what she says, but the attitude, I just can't understand. Life is what it is...she cannot change her tumor anymore than I could. I didn't ask for a tumor, nor did I ask for a spinal fluid leak, facial paralysis, hearing loss... but that doesn't matter. This is my life and I CHOOSE to be happy anyway. I am still here, feeling blessed and loved, and that is what matters. Please, know that God loves all of us and because of Him and the peace He can give us, we can SMILE through any challenge!! Much love to all!

PS - We are doing family things the next few days, so I may not be posting. I will catch up this weekend.

Monday, August 10, 2009

Energy and Guardian Angels

We really had a good, busy weekend. Friday the kids and I went to the park and met my good friend Brittany and her kids. They all played and we got to visit. It was great. Tolan and I went on a date that evening and went to dinner with his parents, then just the two of us went for a long, nice drive up the canyon. Ahhh, some time together was wonderful.

Saturday we worked ALL day long in the yard and in the house and I have to say, I have never enjoyed digging in the dirt so much! It is wonderful to be able to put in a hard day's work and survive it! :)

Sunday was very special for me. We went to Grantsville, where many of the relatives on my dad's side of the family live. It is the first time I have been there since my Grandma's funeral in January. My life has changed so much since then, it is hard to imagine... As I saw her house, then her headstone for the first time, I felt very at peace, despite the tears that streamed from my face. I know that she is now one of the guardian angels who stayed by my side every day and night in the hospital. With her "Prayer Bear" by my side, I made it through the most difficult days of my life. I shudder to think how I would have gotten through without so many angels (here and from heaven) by my side. I love you, Grandma B. I miss you.

While in Grantsville, we enjoyed a wonderful dinner and visit with my cousin, Brad Orgill, and his wife Niki and their family. We so love them and the hospitality they showed to all our crazy kids! It was a blessed day and can't wait for the next family gathering!

I have heard so many sad stories of families who are suffering lately... My heart aches for those in physical and spiritual pain. Please remember in your prayers, to pray, by name, for those you know of who are suffering. I can tell you, without a doubt, that prayer works. I am living proof! Much love and peace to all.

Friday, August 7, 2009

A Valuable Find!

As ups and downs go, yesterday was a bit rough for me...bad headache and kids just being kids. Then, angels surrounded me yet again and without even a call, I had friends call "just to check in" and the kids were invited to playdates for the whole afternoon. Then more friends called and my Dad emailed me several all are my angels. It turned a hard day into a great day. Love to all.

The funniest part of the day was when I had a talk with Trenden right before bed. He asked me something about wearing things on my head and I explained that with the metal plate in my head and the pressure it creates, I cannot wear anything for very long (ie. sunglasses, headphones, hats, even my eye patches that strap around my head). Then he got a look on his face and said, "I'll be right back!" He came back in a few minutes with his metal detector! The following video and pics are the result!! :)

The metal detector (depending on the setting it was on) said my metal plate was either a 50 cent piece or a "pull tab" from a soda can! (In the video, Trenden is discovering it is a pull-tab.) It was quite funny for all of us and definitely a bright spot in our day! Enjoy the video and pics! Happy Weekend!

Trenden trying to get just the right angle using the metal detector....

Wednesday, August 5, 2009

Be-Loved, Be-Friended, Be-Dazzled, and Be-Jeweled

Today I did something I haven't done in the 7+ weeks I have been home. I went through and read the blog from May 13 - June 15 (the entirety of my hospital stay). I really read it to see all the comments from each of you! Though my family read the comments to me each day as they came in, the drugs in my system at the time erased many of the memories of these days. So today I was amazed to read everything and see the true outpouring of love from everyone. I cried as I remembered the hard days and smiled when I remembered all the love, support, prayers, fasting and miracles. Whew! It has been exhausting to go through all of that again. This is something I won't do too often, I assure you, but it was an amazing journey to recall!!

Yesterday I had a couple of wonderful visits that just made my day. In the morning, I got to visit with Loni (DeFriez) Jay. She is such a dear friend and her parents (our neighbors) feel more like family to us than neighbors. They treat our kids like grandkids, having them over for food and movies all the time. We couldn't ask for more love. Loni's beautiful face and always upbeat personality a perfect way to make sure I had a great day!

Later in the day we had the chance for a real treat. Our former neighbors, Stacie (Haaser) Fiet, and her family, Lucas, Annabelle and her husband, Rich, had us come over for a fun little pool party. Stacie picked all of us up and drove us east to their new home in Shadow Valley. The kids had a fantastic time playing in the water (wish I'd had my camera!!) and Stacie and I got to visit for hours. Being a nurse, she knew all the questions to ask about my hospital stay that most people would never think of. :) I still get teary when seeing "old" friends, but Stacie wouldn't let tears last for long. She has had her fair share of "trauma" and rough times, but has kept going by telling herself "I will not let this mess me up or get me down". Because of her amazing attitude, her family has weathered many storms and has only become stronger and more amazing.

In the later hours of our talk, we shared experiences with each other that few people can relate to. I talked about first going out in public, with my eye patch on, face paralyzed, barely able to walk, etc. It was hard for me, as I realized everyone was staring and wondering "What is wrong with that lady?" Stacie, in all her craziness, said not to worry about what people think (especially in reference to the patch and paralysis), but to embrace my challenges...she suggested that I "bedazzle" my eye patches! This way, everyone would know that I am not afraid of my life, but am grateful for every moment, and am truly looking for ways to make the best of a difficult situation.

So, our art project for this afternoon was be-dazzling and be-jeweling all my eye patches! It is wonderful friends (angels) and ideas like this that make every day worthwhile, even the hard ones! Thank you Stacie for the inspiration! That evening we also enjoyed when my aunt Celia Brown came over with us and joined in our nonsense and fun! :) With Stacie around, you can't help but laugh, smile, and occasionally shake your head as you wonder "Could I really do that?" as she makes a crazy, yet wonderful suggestion for your life! Thanks for making life so fun!

Enjoy the pics that Trenden took from our be-dazzling afternoon! Much love to all!

Lindi concentrating so hard on her handiwork!

Lindi and Mom decorating the eye patches!

Casen picking just the right spot to put the sequin!

Casen showing his best pirate face!

Beautiful Lindi and her beautiful patch!

Me and Lindi in our designer be-jeweled patches!

Me in my newly "chic" eye wear!! Thanks, Stacie, for the fun project idea!

Tuesday, August 4, 2009

Slow progress is still good progress

I was so "normal" yesterday that I totally wore myself out by the end of the day. :) I cleaned out cupboards in my kitchen then we went with several neighbors to the South Ogden Splashpad, which was great fun for all. We sat and watched the kids, visited and had snacks. I even drove there myself (sandwiched between 2 of my friends' cars, to make sure I made it okay.:)

The wonderful news is that I am doing more on my own and acting more like a wife and mother than I have in months. Tolan tells me every day now that I am doing great, and it is exciting to have my family feel like they have Mom back again.

Don't get me wrong, there are still all the side effects from the surgeries and complications, but those aside, my energy level is up, my pain is down and I am doing well. Many of my side effects may take 12-18 months to fully recover from, so I am not seeing progress as fast as I did for a while. Now the game is one of patience. :) So, if you don't see posts from me every day, it is simply because there isn't always news for me to tell. I promise to keep you all posted when events change.

To recap, the issues I am still "working on" include:
* Headaches (which are less frequent now, only about 4 times a week instead of every day)
* Hearing loss in my right hear (I do still "hear" echoes, fuzzy sounds, or "sloshing" noises in that ear)
* Problems with my nose (The right nostril of my nose is experiencing some troubles from my third surgery when they went in through my nose to seal my eustation tube from the spinal fluid leak...don't know yet if these are permanent problems or side effects, only time will tell. )
* Facial paralysis including:
- Mouth and jaw: My mouth is functioning at about 80% right now, I still bite my lip, I can't "blow" from my mouth, I can't rub my lips together or drink from a cup. I can move a tiny corner of the right side of my mouth, which is very exciting! Maybe sometime in the next few months, I will be able to smile again!
- Skin: With my paralysis, my glands are missing the communication link that tells them how to control the output of oil, so they are overproducing a ton, meaning I have broken out in acne "rashes" all over my face and neck. Didn't really want to go through puberty again... but what can you do? :)
- Upper face (eye, forehead): These areas have made no improvement yet. My eye is still causing me the most problems and I often don't see out of it, throwing off my balance, coordination and ability to drive. My next apt. is in 2 weeks and I hope to get more answers then.

So, overall, I am vastly improved from the way I was in May and June. No one can tell because my hair covers my scars, but even my hair is coming back in nicely, it is already about 1.5 inches long in the areas that were shaved, so I don't have to try to cover up scars or wear a wig. Little blessings and progress. :)

I really feel like I have a new lease on life. My relationships all mean more to me now than ever before and I continue to enjoy the visits with wonderful old (and new) friends and family! Until next time, much love to all!

Sunday, August 2, 2009

On Our Own Again

We have now been "on our own" again for a whole week. I was originally worried about not having my mother here, as she ran our whole house for the 3+ months she was here, but as it turns out, it was quite invigorating to feel a bit of independence again! We still had help from many friends and neighbors, so I guess we were never truly on our own, but a majority of the time, I needed to be in charge with the kids and the household. It was really another step back to normalcy for our family. And, though I was exhausted by the end of the day, I was also energized by the increased responsibilities and the ability I had to actually do what I needed to do. :) I am also grateful mom called almost every day this week, because I very much missed her company.

Thanks to Deanne, Carl and Aaron Smith, Iris Graham, Belinda Jackson, Cami Sanders and all the wonderful friends and neighbors who helped us out this week!

Friday night we had our church campout and it was great! The kids had a blast and Tolan and I spent most of the time running around trying to keep Daven from falling in the river. (Picture this... Tolan with his bad knee and me with my bad eye and balance, running all over the uneven field chasing after a 2-year old. Must have been quite the funny sight!! :) It was a fun chance to renew friendships and enjoy the company of those we love and who have done so much to help and serve us.

Last night we enjoyed another great evening, this time with our close friends, the Rhoads and Gardaniers. Steve and Laura Gardanier were great hosts and we all basked in the stimulating conversations, like parenting techniques, exercise, and of course, arm hair (that's for you, Steve!!). The kids all survived, too, despite the close calls on two trampolines and a very high deck. :) It was truly wonderful to eat, visit and LAUGH with our friends. We left feeling happy and completely normal!

Today I returned to church, attending all of the meetings. Again, I was worried that it would wear me out, but I found the opposite to be true. I was so uplifted by the Spirit of Christ that was there, and by all the dear friends and neighbors who surround us. We continued to feel blessed and loved by the Lord. May each of you also feel His light in your lives! Much love to all!