Monday, August 30, 2010

.. . . . . . Of Hope and Love

Saturday I went to a beautiful wedding. I cried when I saw tears from the father of the bride as he gave his daughter to her new husband. My heart was filled with hope as I saw the love between the bride and her groom. They, too, were filled with hope, evident in their eyes and their smiles.

They hope for wonderful days ahead, for blessings of health, strength, compassion and love. They hope for fairy-tale endings and real-life miracles. They hope for a strong family and years of growth, until they finally grow old together.

The ceremony, only a few minutes long, reminded me why love is so important. It reminded me that I need to demonstrate love in all I do, as well as in the ways I touch, smile and see others. I am grateful for this event and for the restored hope and joy I feel because of it. I will always remember the look on the bride's face as she stood next to her groom, as he caressed her hand and they said, "I do". A beautiful start to a happy, hopeful, loving life together. My best wishes to Nicole and Patrick as they start out their lives together. And, congrats to my dear friend, Noellee, the amazing mother of the bride!

I pray we can all have that kind of hope and love in our families, this day and always.

PS - Thank you to my dear friends who helped me out at church yesterday when I was feeling dizzy and under the weather. Your loving actions give me hope in mankind. :)

Friday, August 27, 2010

. . . . . . Insomnia

Sleepless nights make for hard days. The last few weeks I have spent hours and hours lying in bed, unable to find rest. Today I decided I have had enough so I called my doc and I am hoping he will have a solution to help. If any of you have suggestions, please share!

Rather than stumble through a long update post, know that I continue to make progress and life is good. I had a facial therapy appointment and Janene gave me a smiley face on my page and said my improvement since June is phenomenal! I could be "conference worthy" because I have changed so much. Great news, and we are still working to make things better.

I hope you are still looking for and finding your own miracles everyday, as we are! Love you all.

Wednesday, August 25, 2010

. . . . . School Days

Walking out the door, sun in my eyes, I can hardly see them as they go...
Once so little, now independent and half grown, as off to school they go.
The smell of new shoes and sharpened pencil leads fills the air
And I see the crisp bright shirts and perfectly combed hair.
With sadness and joy I watch them start a new learning year once more
Knowing my "little ones" become big as they walk through the school door.
Off on their own to face the world, I hope and pray I have taught them right
So they can stand tall and brave, kind, faithful and always full of God's might.

Happy First Day of School! Love, Jodi

Sunday, August 22, 2010

. . . . . . The Beginning, Middle or End??

I have long been debating the end... Not the end of the world or any doomsday topic like that, but rather the natural "end" to this stage of my life. For nearly 2 years, my life has been ruled by doctor's appointments, tests, shots, scans, surgeries, recoveries, and medications. But more than all of these things, as the name of the blog indicates, my life has been full of MIRACLES.

I know that many of you are to thank for the miracles. You are the ones who have prayed for, fasted for, cried for and loved me when I needed it the most. Thank you.

The truth is, I am doing so much better now that I sometimes feel guilty "taking" anything more for myself. I believe I have had the miracles I sought from God, so perhaps this phase of my life is coming to an end. The miracles, I believe will never cease, but maybe "A Miracle for Jodi Brown" should. Perhaps it is time to end the blog, so I can turn all my attention back to my family.

When I contemplate this question, I find myself asking one main thing, "Who are you writing the blog for?" Is this for me? Is this for you? Is this for my family? The answer is, yes, to all three. The blog is a place where I can be totally honest with how I am feeling at any moment, I can shed my tears, invest my hopes, pray for miracles and vent to the world, all in my "little" online universe. It is extremely helpful and therapeutic for me, especially on the really hard days.

Someday, I also hope my children and family will be able to read my words, and yours, and know there is a loving God who cares deeply about each of us, and our struggles. I also want them to know that people are good, and they help each other, even those they do not know.

I also have to admit that I have grown to love all of you. I love the "you've got mail" feeling of seeing that some of you have left comments for me to read. They lift my spirits, make me laugh and help me remember what is important in life. Not to mention, they have kept me going when times were really tough. I also enjoy the relationships I have with so many of you, who have emailed, left comments, sent cards and love as you have gone on this journey with me. Some days, I am only thinking of you when I write.

The dichotomy is that I both dread and look forward to the end. I look forward to being WHOLE and fully investing ALL of myself in my family again, but I also dread the thought of losing all of you, as you are so dear to my heart, whether we know each other or not. But, I also wonder if I have "anything" left that is worthy of your precious time and attention.

So, what do YOU think? Where are we on this little timeline of blog life? The beginning, middle or end?? My love to all of you. :)

Thursday, August 19, 2010

. . . . .Finding the Good, Better, Best

Last year, a wonderful talk was given by religious leader, Dallin Oaks. He challenged us to find the BEST ways to use our time, talents and energies. He reminded us there would be many good and better ways to spend our time, but we should focus on those that would be the BEST use of our time.

School starts next week for my children, as so do all their fall activities. I have found myself stressed over the last weeks, trying to fogure out how we are going to have the time and money for the variety of activities our children want to participate in. The calendar began to fill and I quickly realized that every afternoon and evening (plus some mornings) would be taken with activities for our children.

After a long discussion with Tolan, we have decided it is just too much for the family, and not the BEST use of my time, or the children's time, to be engaged in so many activities. So, I have been un-enrolling kids from activities all week. Already I feel a sigh of relief to know that we have been freed from the entanglements of the world, even the "good" ones.

We will all still have plenty of activities to do, but time together as a family is far more important to us now, and we are confident the BEST way we can spend our time is TOGETHER. :)

Monday, August 16, 2010

. . . . . . Surgery Post-Op Appointment

Today I had a post-op with Dr. Kim. He is my normal oculoplastic surgeon and he will be doing all my follow-ups since Dr. Levine is so far away.

The good news is that my eye looks great (for 11 days post-op, that is). There is very little swelling and almost no bruising left. It is truly remarkable, no, more than that, miraculous is more like it. The docs and their patients all told me to expect terrible swelling and bruising for 3 weeks, with complete recovery in 3 months. In comparison to that time frame, my recovery is truly miraculous. :)

My stitches came out and everything from the procedure looks good. I still cannot blink, and I hope that will come in time, as the rest of the swelling goes away and things settles into place. I emailed Dr. Levine with more post-op questions, so I hope to have a few more answers soon.

The bad news is my vision has gotten worse out of my right eye, a lot worse. I was 20/50, now I am 20/200. Yikes. Dr. Kim said it is because I have "shagreen" which is essentially like having scales (they refer to it as crocodile shagreen) on the eye. Some of the "scales" are normal, but mine are particularly bad now, causing the poor vision. This is likely a result of overexposure and trauma to the eye from everything over the last few weeks, including tests, surgery, contacts, dry air..... So, hopefully it is temporary.

I still have a long way to go, but Dr. Kim was clearly impressed with how far I have come. He said the brow lift looked beautiful and makes me look much more normal (I agree!). He also said there are surgeons who can help fix my smile by literally "pinning" it up from my temple and hooking the corner of my mouth. Strange thought, but no stranger than a spring in my eye. :)

So, a good appointment overall, with plenty of room still for improvement. Check out today's eye pics.

Saturday, August 14, 2010

. . . . . . . The Importance of Friends

For making me smile and lifting my spirits, thank you, dear friends. For sending me flowers and cards of care, thank you, dear friends. For calling and emailing and bringing over dinner and treats, thank you, dear friends.

Good friends are sooo important! I truly appreciate all the kindness that has been shown to our family this week. Thanks to Cami and Heidi for wonderful meals, to Randy for his always heartfelt sentiments and card, to the gang at OC Tanner for the beautiful flowers, to my sisters and my mom, for listening when times were tough, to my dad for being so faithful at checking up on me, and to my amazing husband for taking care of EVERYTHING when I couldn't! Oh, and to our dear, dear friends, the Rhoads, thank you for driving up here to spend the day and evening with us. It was a wonderful visit, a fun BBQ, and the kids had a blast at the river!!!

This river is just about 2 minutes from our house, it is just like a scene out of the movies, with a water hole, rope swing and a rafting area! I love where we live! :)

I love you all and the amazing support you give me, especially when times are tough! Thank you!

Wednesday, August 11, 2010

. . . . . . Weighty Matters

It is probably good that I didn't write a post yesterday, as I was an emotional basket case most of the day. My apologies to anyone who happened to call or stop by, and therefore became a victim of my tears and blubbering.

Let's just say that it takes me a day or two to get a grip when reality strikes and I realize that there is no such thing as a "fix" to my issues. I am so ready to be better, to be well, to be whole, but that day will have to wait. Until then, the "hard" days will happen from time to time. I guess that is life.

I have finished some of my meds, so I have fewer side effects to deal with now, meaning I should not have as many dizzy spells, balance issues, headaches and mood swings. That is great news.

My eye is looking great, all things considered. I cannot believe how quickly it is looking better. It is still not functioning the way it will, but progress is happening.

After surgery last week, they gave me back the gold weight that was in my eye since last June. Strange to see this little piece of gold and realize that it was part of me.

Notice the curved shape, which was supposed to fit the contour of my eye.
My kids were hoping it would be worth a lot of money, since it is 24 carat gold, however, according to the price of gold today (which is near an all-time high), I figure it is worth about $70. We could melt it down, but it would hardly be worth the effort, I'd rather keep the gold weight as it is. It is part of my history, part of me. And, I KNOW that one day, photos, eye patches and gold weights will be the only physical reminders of my challenges. So, I better keep it, just for proof. :)

Monday, August 9, 2010

. . . . . Spinning Around

Nearly 18 months ago, not knowing what was going on inside my head, I put a status update on my Facebook account that simply stated, "Jodi is dizzy." An old friend that I haven't seen in years jokingly replied, "Then stop spinning around in circles."

How I wish I could stop spinning now. The medications I am on following my surgery have several side effects, and in pure Jodi fashion, I am experiencing many of them. I am quite dizzy, off balance and have headaches again. It is eerily reminiscent to my condition last year before my brian surgery. Not wanting to go back there again, I will gladly take this instead. Still, I hope that as I finish my meds in the next few days/weeks, I will be able to put my head on straight and stop spinning around in circles.

And, selfishly, I want the process to go faster. The doctors told me it would take 2-3 weeks for my body to feel better and 3 months for my eye to look normal. In the scheme of things, that is nothing. And, in reality, I am progressing much faster than they had hoped. But, last night I couldn't help but wish I could just be totally healed, all at once. I know that is selfish, for there are so many whose maladies are so much harder and worse than my own right now, but sometimes I still feel that way. I want to be me again, in body and spirit. Funny how one day I can feel so blessed for my body, the next so overcome by it not working the way I want it to.

Agh, enough wallowing. Thank you again for all the wonderful notes of encouragement and love. It is your prayers and faith that have helped get me this far, so I should not complain to you, but rather, simply say "Thank You", dear friends for your support.

Sunday, August 8, 2010

. . . . . Family Update

Now I know for sure that the Lord sustained me during the funeral and the days following my surgery. I know because now I feel like I should have felt then. I have slept a ton and I still can't quite get feeling better yet, but that will come in time.

I did go to an hour of church today, and despite not physically feeling well, I was glad I went. I always feel the love of my friends and neighbors, as well as the love of my Savior when I go.

But, clearly I still have more recovering to do before I am functioning again. One positive note, the doctor in CA told me that because of my facial paralysis, the swelling would be either delayed or not as bad as normal, because my glands don't work and don't send the water signals properly. So, the good news is my swelling is at a minimum, though the lovely, flattering photos below will show that the bruising has set in.

Oh, and my nose is crooked now, too. That's a new one, but I guess it is because the paraylzed muscles and good muscles are pulling things in opposite directions but the forces are uneven, so I am crooked, yet again. All in time...

This is a good reminder, once again, that our physical bodies are not representative of our spirits. I am not my bruised and battered face. Inside, I like to think I am glowing after all the love I have felt and lessons I have learned from God.

I wanted to give an update on my sister, Tami, and her baby, Kurt. He is only a month old now and went in for a CT scan Thursday to check on the status of his CCAM tumor. Well, it is bigger than they thought (4.5 x 3.5 2.5 centimeters) and in a lower lobe of his lung. What's worse, it is still growing, fairly rapidly. The surgeon told Tami to pay attention to his condition constantly and if ever ANYTHING appears of out the ordinary to take him into the hospital. They will have to do surgery, but they hope to wait until he is a little bigger and stronger. Please include them in your prayers so we can have miracles for little Kurt, too!

While you are at it, please pray for my sister, Kristi, as well. She is in the process of being diagnosed for a still unknown disorder that is causing her to grow cysts throughout her body and put on massive weight gain. She is tired all the time and her hormones and entire body is out of whack. The process of figuring it out is very long, as there are literally thousands of potential causes they are sorting through. This is difficult both physically and emotionally as they try to figure out why her body is fighting against itself.

So, if you have enough energy left to exert on our family, please add my sisters to your list! Thank you! I love you all!

Saturday, August 7, 2010

. . . . . . . Home again, home again

We pulled into our comfy Riverdale home at 1:15 this morning, after a long drive home yesterday. We slept in late this morning and I'd like to say that I am feeling great today, but instead I feel hammered. I feel truly blessed and I believe the Lord (and all of your prayers) sustained me over the last 2 days, and now my body knows it can rest for a bit.

So, honestly, today I feel like I've been hit by a truck, not a big semi or anything, maybe just a small lightweight. Still, I need to rest, rest, rest. But, the best part is I can close my eye! I am so overwhelmed by this simple action, I cry when I think about it! what a tremendous blessing!!

We had such a whirlwind week, I honestly cannot believe we made it through everything, drive to CA, surgery, three big trips into LA ans Beverly Hills, the funeral and the drive home, all in 4.5 days. Tolan is amazing and took care of all of us.

There are so many beautiful pictures and stories from the funeral, but they will have to wait til I have more energy to post them. For now, here are a few pics of my eye.

Right after surgery, before too much swelling had set in. Looks pretty good, all things considered.

The swelling is going down today, but the bruising under the eye is setting in. Still, good progress...and I CAN BLINK!!! (It will be better once the swelling goes down.)

Thank you again for all your support and prayers!

Thursday, August 5, 2010

Post Op Checkup

Well Jodi had a full day, going to grandpas funeral this morning and then off to her post op check. The funeral was very nice and felt like a good closure to saying goodbye.

She said she felt pretty good when she got up this morning, there was less bruising and swelling than she or the doctors expected. (Saying that, she still has a good shiner) :-) The doctors said she looked "great!" She has some stiches that need to be removed, some of which Tolan can take out. The others she will need to go into an eye doctor in 10 days for the removal of.

I talked to Jodi earlier and she said last night when she was going to bed that she could blink, it was very emotional for her, she then said a prayer of thanks for this gift. (Not being able to blink for 15 months would sure be annoying.) Everytime I am with Jodi I am amazed at how well she has handled this frustration, even though you can tell it is a huge inconvience. Hooray for a working eyelid! :-)

Now she is anxious to get home, we aren't sure if she will make the drive with Tolan or fly home....

Thanks again for all the prayers!


Wednesday, August 4, 2010

Surgery Update From Jodi's View

Right now I am on the phone with my dad who just got off the phone with Jodi, so here is an update from Jodi through my dad, then through me. :-)

Here is what he is telling me that Jodi wants to share with everyone:

-The surgery lasted about 5 1/2 hours
-The doctor feels like it went well
-It took Jodi longer to come out of the anesthesia than they had expected, she was still feeling the effects of it 11 hours later
-As a part of the surgical process they had her blinking to test the spring, and she was actually able to blink a number of times, she was so excited that she could blink for the first time in over a year that she wanted to give the doctor a hug and wanted to cry, but couldn't cry because that eye won't cry :-)
-They did an eyebrow lift in order to make her eyebrow even with the her left side and inserted a prosthetic to hold it in place that will dissolve over time
-She is on several medications, including a pain killer, a steroid to help keep the swelling down and an antibiotic to keep off any infection
-Right now the eyelid is swollen so she can only open the eyelid a little, and around the eye it is pretty black and blue (she is expecting to be more black and blue tomorrow and in a larger area because of the lift that was also done) she has been keeping ice packs on it
-They didn't cover her eye up with a patch because it will heal faster if it is exposed to the natural air
-The plan is to try and get some sleep tonight so she can go to Grandpas funeral tomorrow and go to her post op exam in the afternoon

Yesterday they did some testing on how much moisture her eyes produce, her right eye only produced 20% of what it should. The surgery she had today won't correct that problem..the doctor is having her wear a contact to help keep moisture in for a month or longer.

Jodi wants to thank everyone again for the thoughts and prayers, she along with all of us knows they make a huge difference and are felt everyday.

So hopefully Jodi comes home black and blue and swollen like she has been in a good fight, but can BLINK! :-) It makes me cry and smile to think of her being able to do what seems like such a small thing for the rest of us again! Love you Jo!


(She also wanted me to make sure and include that if any of you have any more prayers left in you that I would appreciate any prayers on behalf of my little baby Kurt. He is going in for a cat scan in the morning to see how the tumor in his lungs is affecting his little body. Thank you, thank you!)

She's Done!

The doctor said things went well, the hardest part was getting Jodi to wake up so that he could have her blink and test the spring.

Surgery Update???

I know there are some that have probably been checking the blog today looking for updates on Jodi's surgery...well we don't have much of an update.

Jodi has been in surgery for about 2 1/2 hours and Tolan isn't expecting any news for 3-4 more hours. The doctors told him that he wouldn't even see Jodi until she was ready to be loaded into the car to leave. (I thought that was a little strange.)

The doctor said the suregery would probably take around 3 hours, but the nurse told Tolan that this particular doctor is such a perfectionist, it always takes longer than he thinks and that it would be closer to 5-6 hours.

So that is basically all I know...

Keep praying and thinking of Jodi. I am really hopeful that this surgery will help her...that she might be able to see, and drive, and go outside on a windy day among other things again.


Tuesday, August 3, 2010

. . . . . . . 14 Hours and Counting Down (and Rodeo Drive)

It has been a very long day, and it is only 5pm, here in California. Tolan and I left over 8 hours ago to go to my pre-op appointment, which ended up taking the entire day. We are exhausted. And, we leave in 12 hours to go back again for a much longer, harder day tomorrow.

The office was downtown Beverly Hills, in fact, we parked on Rodeo Drive. But, we didn't get to enjoy any of the glamour and glitz because we spent the entire day in the office. It was a much harder office visit than I anticipated. Getting fitted for the spring was an interesting process, the wire for my eye was literally right up against my eyeball, as they replicated the curvature for the spring. At different times, they also put litmus paper in both of my eyes, poked my eyes to see if my right eye is numb (turns out, I only have about 25% feeling in my right eye), and poked and prodded dozens of different ways.

It turns out that my kind of facial paralysis, with nerves 5, 7, and 8 being damaged, is significantly worse than just 5 or 7, both of which affect the eye. The doctor also plans to do a slight brow lift so that my right side is symmetrical with my left. A little plastic surgery anyone? That is why most people would go to a doctor in Beverly Hills, right? They will also have to cut and tighten my eye muscles to adapt to the new spring when it is implanted. So, the recovery will be much more than just my eye. I will look like I have been beaten up, but hopefully it will all be worth it!

The surgery will start at 9am tomorrow, though we have to leave here at 5:30am to be there by 8am. I have been calm the whole time, but my nerves are starting to get to me. It sounds like the procedure will be very long, lasting most of the day. Part of the time I will have to be awake so they can test to see if the "blink" works. Fun. Fun. Fun.

Prayers would be lovely, if you happen to think of us tomorrow. Someone in the family will try to post updates throughout the day. Thanks so much! I love you all!

Monday, August 2, 2010

. . . . . . . . A Long Road Ahead

Flexibility is a key to managing life and enjoying the journey. Our plans all changed after we learned of Grandpa's passing on Friday. Now we are on a different path than we expected. Instead of flying to California today, we are on the road, driving, to allow us more flexibility to accommodate for the funeral and my post-operative doctor's appointments. I am still planning to have surgery on Wednesday, with my pre-ops all day tomorrow.

Therefore, the road ahead is literally a long one. After a great stay in St. George last night with our friends, we are on the road again, with 6 more hours to go. The long hot Nevada desert is ahead of us. Thank heavens we live in a day of air conditioning...oh, and wireless computer connections.

Tolan's family will all be converging in La Habra within a few days. It will be another family reunion, full of love, hugs, laughter and some tears.

Oh, one little miracle happened yesterday! As we were descending into St. George, my ear "popped" for the first time in almost 15 months! I have no idea (medically) how this happened, since my eustation tube is sealed, but it did and I am now able to pressurize a little bit! That means not as much pressure or as severe headaches upon changing elevations! Wow. I continue to feel blessed that the Lord is still healing me, one day at a time!

Here's to safe travels ahead!