Driving!

That's right. You heard correct. I said driving. I have started going to some places. Neighbors, church, dentist. My therapist said it wasn't as hard as it looks. I don't use balance and there is little body movement. As Pete said, I've done it thousands of times so don't be scared.  I am mostly concerned about my concentration, sight, and reaction time. Brain things. I keep it slow and only turn right or find a light so I don't dart into traffic. I take smaller streets that don't have a lot of traffic or speed. I have to have someone with me as a second pair of eyes and don't drive at night where it has a lot of glare. And I don't go too many places. I still get rides. :)It was a very big emotional thing. I had a bad week last week and part of it was feeling trapped and helpless. I couldn't run for milk, or a present or even down the street to pick a kid up. Now I can choose.

My face is slowly getting feeling on the right side. I can sort of half smile but I look cynical at best in pictures. I am doing better with eating out, a little bit less self conscious. Although Pete is good to subtlety tell me if I am wearing what I ate rather than eating it.  Some of my mouth is still numb so the dentist found a spot I had been biting and hopefully I can take care of it with super strength mouthwash.

I did stairs, curbs and grassy hills in PT but I failed at walking on the curb like a balance beam. Lets hope I don't get pulled over. I can throw a ball with my right hand in front of me instead of behind, if I concentrate really hard. I'll try overhand soon.  I wasn't so good at it last week. I was first base and PJ threw it to me a little low and to the left. I leaned in and ended up like a turtle on my back. I can "run" bases better than Memorial  Day, but I still can't run.

Toddlers don't look away so I ask them if they like the eye patch. They are too scared to answer. Adults wonder but they are too polite to ask. It is a little awkward at times.  I wish I had a shirt or pin to explain the problem so they would know. Friends ask, I just hope I don't talk  too much about it. I present like a stroke victim.

The summer is getting better because I am starting to plan things. it is far from normal but I don't think that is bad for the kids.

Rehab

I did get a valid handicapped thing from the DMV and it has been so nice. The only time the parking is full is PJ's baseball. I guess a lot of grandparents see the games. :) I am playing games for OT and doing dance steps for PT. I'm not good with the steps but they are helping me with steps and curbs. I am challenged  with all this writing (therapy) so I will post pictures.



Christian and I loved the fruit! I wore a lot of it.



PJ's Birthday





Lily received an award for 6th grade celebration. I'm not mad, just limited.

My new motto.





Last Week

There is difference between "frozen" and "drooping". The former being my term.  The right side of my face and  head was frozen for a long time. It was much like Botox, I am told, because it held the muscles still. It was probably swollen because I could do nothing about the peeling like a sunburn. Now my face really droops but I can move it around. I also realized that a massage chair is not good for me because my muscles in my head do not make my insides as still as they should be.

There is a small scar/incision on my belly from the fat they took to seal the cerebellum and replace the tumor in my skull. Believe me that the surgeons were not "plastic surgeons". Therefore, they did not make it the same on both sides. I am not complaining...just saying. I lost more weight from not eating and throwing up than my little transfer.

I can walk without assistance and only look somewhat like a toddler. But stairs and curbs are not my friends yet. I need assistance if not railings. I tried "running" bases when we went to the park Monday (Memorial Day) and played baseball as a family.  Christian could have beat me, and it took several tries before I could hit home plate with my foot, but I hit the ball all by myself several times. It was a small victory. :)

I am permanently deaf in my right ear, but that is the least of my problems. I don't notice much and the few times that I have I think "it would be more helpful if I could hear". Like when a child is whispering something, or I have to ask someone to repeat what they have said, or Pete sits on the wrong side at the movies.

Now summer is here I am excited and a little intimidated.  Syd and Lil have a designated day they are in charge of Christian. He is faster than me and he knows it.  He is still 3.

I'm back - kind of!

I’m not fixed and I certainly don’t have spell check figured out but I am writing just the same. My left hand has become more graceful and dominant while my right side has issues. I won’t be driving for a little while because of it, even if I felt mentally good enough to drive.  Which I don’t.  
 

Saturday, May 11, Pete took me to Ben’s annual birthday bash: a marvel movie, this one being Iron Man 3. He didn’t mind being seen with the one who couldn’t walk or the eye patch. I still haven’t taken the time to get a handicap decal so he had to drop me off and park. It was a great night despite the case of emergencies. (noise cancelling headphones, crystallized ginger, preggie pops, oxicodone, blanket, and hospital  space-saving  throw-up bag). It made me brave enough that we went to a park monday night just to enjoy summer.

We visited Dr. Shelton, Thursday May 16, and I failed the tests miserably on the right side. He said the temperature issues on my left side and the control on the right side are both cerebellum issues. He ordered a ct scan to rule out water on the brain (hydrocephalous) and ordered physical and occupational therapy to help.  My eye looks good for its condition and I got more patches.  

I have been getting my breakfast and filling up the dishwasher as a novelty. I’m not much help but at least I’m not much as a burden either. I waddle upstairs to put the kids to bed sometimes but I rely on others to do laundry and clean bathrooms.  Anything really important. The boys are taken every school day because I still take good naps. Even Christian knows the routine.  He tells me he cries for mommy and daddy but he has a house and he sleeps there. L But he says it in a smiley “reassure me” way.

 That is all I can type out as a left hander, double vision, kind of gal. As long as you are forgiving I will write more often.

The long road

With the kids back home and work starting up again, I've struggled to find the time and energy to update the blog. After this entry, I think I'll try small updates on a regular basis just so everyone can keep up on Mandy's progress.

She is walking a little more each day, but still feels motion sickness almost all the time as her body adjusts. She has times of frustration and the blues as we realize this is going to be a long-haul effort but she is pushing through.

Amanda is starting to get some feeling back in the right side of her face and tongue, but she still can't move anything (smiling, eye blinking, etc.) on the right side of her head. The right side of her body(arm, hand, leg, foot, etc.) still don't work like they used to but it seems to be slowly (very slowly to Amanda) improving. Her speech is much better and it continues to improve although there is still a pronounced slur.

Understandably, Mandy struggles at times with not feeling as pretty and useful as she did before the surgery, and yesterday she broke down for a little while. After a good cry session (her first one she would remind you!), she picked herself back up again and continued to practice walking on her own.

In a perfect display of timing, she shuffled to the kitchen table and opened several cards and gifts that reminded her people are still thinking of her and praying for her. That makes all the difference for her.

Thank you to the good friends and family that have been and continue to be so supportive and kind. She still has a long road ahead of her, but the thoughts and sweet gestures really lift Amanda up. We haven't been able to specifically thank people individually, but please know your efforts are noticed and so appreciated.

Amanda's birthday and the walking wounded

Amanda's dad is spending her birthday day with us, so it's the afternoon with the walking wounded. 5 days after Amanda had her brain surgery, Ray had quintuple bypass open heart surgery. The doctor indicated his heart is incredibly strong, and he is recovering well. Kind of neat to have Mandy and her dad spend some recovery time together. Between the two of them, we've got one complete person!

Kids stopped by to wish Mandy a happy birthday, and to show off the candy bar card they made for her. It was wonderful to see them again, and to hear the sound of the kids around the house (for a few minutes). Family and friends have been so helpful during this time. Tough to sufficiently express gratitude for the help we've gotten.

Yesterday, we visited Dr Leininger, who specializes in rehabilitation of neurologic and musculoskeletal dysfunction. He evaluated Amanda and recommended physical therapy for balance and walking and occupational therapy for the eating and facial control. We'll give the therapists a call Monday and get it all scheduled.

The drive down to Provo yesterday really took it out of Amanda. For once, I was glad the doc was an hour late because Mandy got to sleep and recover from the drive. By the time we got home, Mandy was spent and ready to sleep.

Progress is still slow but steady. Amanda is able to talk better and her balance is slowly returning, although she still needs assistance walking. It's frustrating for her to be in the role of care receiver when she is so used to being the one managing and running everything for our house.

It's fun to hear Mandy read to Christian again. He doesn't care about the slurred speech and facial weakness - it's just mom again. In fact, he thinks mom is even cooler because she gets an eye patch. As soon as he walked in he poked Mandy's eye patch and said, "You get a pirate!"

The boys visit

The first day home was a mix of good and bad. On the good side, it is wonderful to be home and Mandy isn't awakened every 2-4 hours by someone looking to check her vitals, ask questions, give medications, etc.

On the down side, nausea ruled the day. After riding the porcelain bus twice, we decided to hop off the heavy pain meds and try regular schedules of Ibuprofen and Tylenol. That seems to have helped. Mandy has been eating quite well ever since, and the nausea has subsided.


In the evening, the boys came to visit, and it was wonderful to see them. Christian was very affectionate and sweet. We forgot that he is very intense about life and he yells everything when he speaks, even if he is 1 foot away. PJ was so concerned about Amanda, and he just wanted to stay close to her and give her hugs. Sam was happy to see mom, but soon started playing tag and hide-and-seek with Christian. We hung their homemade cards up on the window.

Tuesday has been better. Mandy slept through the night and so far, no more barfing. Amanda decided with the nausea behind her, she would like to try pushing the walking a little more. She is a little frustrated that her walking has not progressed as rapidly as she has hoped.

We moved the recliner from my office into the front room and that is now Amanda's chair. I think that was her master plan all along! It's actually great to have a seat in the front room now where she can rest and be a part of the action. If she gets too tired, she reclines and takes a snooze.

Home at last

We made it home this evening around 5:30 pm. The car ride home was a little dicey for Amanda, but we made it. Sydney, Lily, and Julia came to visit mom, but it had to be a short trip - Mandy was spent. She loved seeing her girls, though. Jana and I agreed it would be best to have Chrisitan visit when both he and Amanda have gotten some sleep - good call Jana.

We had one vomiting session this evening because of the nausea, but got that cleaned up and Mandy did a little walking around the house. She thought about trying the treadmill but decided she needed to be able to walk on her own first - another good call. Made her a kefir smoothie to help with immune system and rebuild the good bacteria after a week in the hospital, and now I'm ready for bed. On to the next phase - recovery at home.

A New Day

Last night was long and hard for Amanda. She was nauseous all night and as she starts to slowly regain some feeling on the right side of her face and head, the feeling that comes first is pain. What cruel irony that the thing which will help her most in the long run (getting up and walking) is the same thing that causes the most nausea and pain in the short term.

As a small gift to let us know that after long, hard nights come hopeful, new days, the Lord blessed us with this beautiful sunrise this morning.



Sunrise view out Amanda's hospital room window

Our plan is still to come home today. With all the IVs out and prescriptions written, Amanda figures she can be nauseous just as easily by walking in her own house and lying in her own bed, as she can in the hospital. She's anxious to see the kids (in small doses still), and pass a milestone in her recovery.

Mandy continues to get a little better every day, but it will take time for this collection of little improvements to result in a more full recovery. Sounds like a metaphor for life.

Sisters

Today, Teri Anne, and I (mainly Teri) washed Amanda's hair to get out the blood and goop from surgery. We had to be careful not to get the incision wet, so we set up a garbage can on a chair next to Amanda's chair, and she leaned to her left so Teri could pour water over her hair and let it run into the can. I was on water and cleanup duty while Teri washed, conditioned and braided Mandy's hair. There was a lot of stuff in there, so I was glad Teri was here to wash it all out.

 Amanda, Teri Anne, and I did 2 laps earlier today, and Mandy has been able to steadily eat a little more each day. As a result, we're heading home from the hospital tomorrow, April 14. We're anxious to get back home, but Mandy realizes she still has a long road ahead of her.

Sometimes it feels overwhelming, but I suppose we take it a day at a time. We try to set plans for today and let tomorrow take care of itself. That's so much easier to say than do, but we're working at it.

WARNING- Incision Picture Below

We learned from our past morning experiences and today we let Mandy rest in the morning - smart move. She still gets nauseous first thing in the morning, which wears her out, but she ate a decent breakfast on her time and has been sleeping well with just Extra Strength Tylenol since then.

The bandages have all been removed from the incision area, and the doctors and nurses all think it looks terrific and is healing wonderfully. Is suppose beauty is in the eye of the beholder on this one, but it's a relief to know everything appears to be healing well.

The surgeon visited us this morning and indicated we would shoot for departure on Sunday. However, he filled out all the paperwork so if Mandy feels well enough to go home today, she just needs to say the word and away we go. We'll see how the walking and eating progress today, but we'll plan on coming home Sunday unless her status changes in a more significant way today.




Amanda's incision healing well. The white band is for her eye patch, which keeps her eye moist
because she doesn't have total control over her eyelid yet and doesn't have feeling in her right eye

Running laps like Jeff Gordon

I left to check on the kids for a few hours this evening and came back around 9:30 pm to find Amanda sitting up in bed and chatting with Teri Anne. Mandy looked great and was part of the conversation like classic Mandy. I noticed the IV was out and she was free from all wires, tubes, and bandages.

After talking until 10:30 pm, Mandy decided to do a little walking. With Teri on one side and me on the other, we walked a full lap around the floor (about 1/10 of a mile). Mandy walked straight without a walker and with only minimal assistance the entire way. She was movin! As a reward, we snagged one of those double-wide wheel chairs made for the old people on the floor (they were all in bed), and cruised around the floor for one more lap with Mandy sitting up straight and taking in the amazing views from the 14th floor.

I  have high hopes we'll be outta here tomorrow and back home to continue the road to recovery from the comfortable confines of Cedar Hills. I think Mandy is most excited not to have someone wake her up every four hours to strap on the blood pressure cuff and ask her what year it is, where she is, and what month it is (apparently standard questions on the Neuro floor).

We seem to have hopped off the plateau and are moving up again. Good stuff.

Not a morning person

Mandy and Teri after the post-op shower

I'm not sure why I thought having brain surgery would suddenly turn Amanda into a morning person. We've discovered that mornings are still not her thing - especially for pushing rehab and eating right now. I crossed the fine line between encouraging and pressing this morning, and Mandy firmly told me it was time to leave her alone. Note to self - avoid morning goading. Moving forward, we'll let morning take care of itself and try to make more progress in the afternoon/evening.

Once she slept for a few hours, Amanda woke up ready to try a shower. This was a first for us, but with Teri Anne's help we did awesome. I discovered that women apparently use washcloths and men shouldn't try to do hair. Mandy commented that she was glad we're 15 years into marriage rather than 15 days because post-op baths aren't the most flattering events to go through. True statement. Teri Anne braided her hair and put a scarf on to cover the scar (sweet scarf Samantha), and I think she looks great. Mandy said it felt great to take a shower and brush her teeth.

Chocolate milk, fruit, and cottage cheese rounded out the early afternoon and it's time for some rest for Amanda

. Unfortunately we'll have to start the walking routine later this afternoon, which is just not a lot of fun for her - more of a necessary evil right now. She's now off the heavy pain meds, and is on a routine of Ibuprofen and Extra Strength Tylenol which we hope will help with the nausea.

We won't be coming home from the hospital today, but we'll shoot for tomorrow if Mandy progresses enough. The surgeon and I talked and he indicated there are general timelines for recovery, but it varies for each person. There is not a deadline for coming home, it will be when Mandy is more ready. That being said, she wants to go home, so we'll work toward tomorrow as our goal and see if we can hit it. If not, we'll shoot for Sunday.

Groundhog Day

Today sort of blended in with yesterday. Amanda continues to work at walking and eating, but its going to take time. We're learning to identify small accomplishments, like sitting up in a chair to eat dinner or getting to the bathroom with just one person helping. It's a bit of a realignment toward the immediate reality. We both talked about recovery being "hard", we just couldn't identify what "hard" meant - and I suppose there is no way to know until you pass through.

Amanda is able to eat a little more. She ate the whole cup of potato soup and polished off most of an oatmeal raisin cookie for dinner. She was able to sit and converse with Terri Anne for a good 20 minutes during dinner, which I think was very therapeutic for her.

We hoped walking would come easier today, but it didn't. Amanda's balance is a little better but she still gets nauseous and wears out quickly. I think we're supposed to go home from the hospital tomorrow; I just don't see how its possible. We'll tackle tomorrow when it comes.

What a difference a half day makes

After our rough start this morning, Amanda decided enough is enough. With the IV properly in place, she rested up, let her Popeye arm start to shrink back down, and got herself ready for a restart.

At dinner she ate 1/4 cup of the tortilla soup, a few spoonfuls of pudding, and several gulps of water. The appetite is slowly coming back, but anything she eats gives her a little more energy to get up and walk. After the feast, it was time to rest again - kind of like football after Thanksgiving.

After sleeping for a good 3 hours, it was time for another bathroom shuffle, and then walking in the hall. Mandy's whole right side doesn't work quite as well as it used to right now, and when she walks, there is a heavy lean to the right. If someone isn't on the right side, she would walk right into the ground within two or three steps. She's still working on the new balance routine, but this is all part of the drill.

When we got to the end of the hall, Amanda decided to hang a left instead of stop and sit in her usual chair to the right. With the IV tower in tow, we did an entire half lap around the floor! Right next to the nurses station, she let out a belch that rattled the windows. That's my girl! She was going to finish that half lap with or without the tortilla soup (happy to announce it was with).

Once we reached the room, Mandy sat in a chair to rest for a few minutes, and then backed into bed for the night. Her speech is still slurred, and her smile is still crooked for now, but what a gritty girl. I couldn't be happier with the progress she made today. I can see that God hasn't removed the trial, but today, He gave Mandy the strength to bear it and make it through. A true tender mercy for us today.

Thank you for the service, thoughts, notes and flowers - all small miracles performed in perfect timing by earthly angels. Matthew 25:40 - And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.

"This Sucks!"

Today was a bit of a setback day. In theory it was supposed to be a day where Amanda turns a corner and starts to feel dramatically better. I suppose there is still half the day left, but so far it's been more of a downer day than a feel-good one.

Mandy was up and doing some walking this morning, but relearning to walk and balance is proving to be a daunting task. I think her quote after we made it to the bench by the window about 10 yards away was, "This sucks!"

Her face and tongue on the right side are still totally numb and lack control, so she hasn't been able to eat much. A couple of spoonfuls of oatmeal and applesauce so far today leaves her feeling hungry, but a limited functioning tongue and face create more food outside the mouth than in, and relearning to balance leaves her feeling nauseous. Kind of a Catch-22. She made it though, and we planned to have another go at it around 2 pm.

At the 12:30 pm checkup, the nurse pulled back the covers a little and we noticed Amanda was developing a "Popeye" forearm. Either she was doing a ton of wrist curls in bed or the IV was not functioning properly. As you might guess, it was the latter. All the fluid and pain medication was draining into her arm instead of  making it through the vein to the blood stream. The nurse quickly put another IV in the other arm, and started it back up again. However, this meant Amanda had been without pain and nausea medicine for a few hours.

Of course her head started to throb and ache, and after a quick(ish) shuffle to the bathroom, they gave her some Loratab and Morrphine to ease the pain. We decided to postpone the 2 pm walking tour of the nurses station, and she is resting again instead.

We'll have to get her up again this evening to try walking some more, but so far it's been more of a struggle today than we anticipated. I'm sure this is part of the process and there will be other days like this. Apparently, though, you can't do much about it except give it a try, sit down, rest, and mutter, "This sucks!" before you try again.

Ups and Downs

While Amanda continues to get a little stronger as the hours go by, there are down times too. This evening she was frustrated and angry about the numbness and facial weakness on the right side of her face and tongue. It makes talking, smiling, eating, and drinking a chore, and understandably she gets annoyed by it all. The doctors indicate it will take time for the nerve to heal, but it's hard to be patient.

She accomplished the goal her surgeons set for her by sitting up in bed a number of times and then actually getting out of bed and sitting in a chair. Unfortunately it makes her very dizzy and nauseous, but that's apparently the body's way of figuring out how to adjust to the new balance scenario. Again, an understandably frustrating situation where patience is the lesson to be learned whether we like it or not.

Tomorrow, the goal is to start walking. I anticipate our pals dizziness and nausea will accompany Amanda on that journey too, so more development of patience and determination. A wise man (Neal Maxwell) put it well, when he said, "Paul speaks of the marathon of life and of how we must "run with patience the race that is set before us" (Hebrews 12:1). Paul did not select the hundred-meter dash for his analogy! Living cannot be all crescendo; there must be some dynamic contrast."

I get the sense that this experience is shaping (and will continue to shape) Amanda into an even more patient and compassionate person, which is hard for those of us who know her to imagine. She's already richly blessed with those strengths. I suppose she will move on to super-patient and super-compassionate, it's just hard for me to watch her struggle and be of such little assistance. Sounds like lessons for me to learn as well.

Movin On Up

Amanda just got transferred out of the ICU. She's now in a private recovery room on the 14th floor (room 1424). The view is spectacular and the nurses indicate she is doing remarkably well for a patient who has had this procedure done. Things are looking good!



View from Amanda's recovery room

Amanda already recognizes that background noises seem much louder to her now and it makes a conversation more difficult to have. She's impressively resilient and optimistic, though, and I would bet on her adjusting well. She's one of the best roll-with-the-punches people I know.

The eye drops came and it's my job to plop them in Mandy's right eye every hour so the eye doesn't dry out. I think they're just trying to help me feel useful, but I'm glad to help where I can. I feel like Christian helping me around the house, "Just hold those screws and don't touch anything else." Probably for the best.

Amanda passed her breathing test with flying colors, so no pneumonia after surgery. The move upstairs plus two big swallows of cranberry juice and she is spent - so back to sleep for Mandy. We'll try chair sitting a little later after she has had a chance to rest from juice drinking.


April 9 - 9 am - First Night Down

Well, Amanda made it through the first night. Around midnight she woke up more than any other time since surgery and we were actually able to have a short conversation. No discussions about goals or ambitions or anything like that, but it was good to hear he put short sentences together again. She mentioned how she was aware of what we were saying earlier, but she just couldn't communicate. She said she was in there and could hear us, but couldn't speak. Watch what you say - she's listening!

So far it's been a steady, small diet of ice chips, but anything that has gone down has come back up shortly thereafter. Between regular checkups from the nurses and the shots of morphine, though, she slept pretty well.

At 3 am, she decided she had enough laying down and sat straight up, which freaked me out a little. I raised the bed to a sitting position, and after another ride on the barf train, she went back to sleep until the next checkup.

Dr Reichman came in around 6 am and indicated again that everything went very well in surgery. He's going to move her from ICU later this morning, and he wants her sitting in a chair at some point today. He's also having the nurses take the catheter out after the move so she will have to walk to the bathroom when that time comes. They don't mess around. So much for a slow, relaxing ride to recovery.

At 7:45 am, Dr Crockett came in, and I helped him change Mandy's head dressing. They didn't have to clean me up off the floor, so maybe being involved in all the children's births has done something to me. Maybe it was just the adrenaline. Her ear looks good and the shaving is indeed minimal - kind of like a bad 80's haircut that's high and tight around the ear.

Dr Shelton came in about 8:45 am and indicated that when swelling goes down, the facial nerve should return to normal, but for now, she's got a crooked little smile. He's going to start some kind of eye care routine because she has a hard time completely closing her right eye and he doesn't want it to dry out and create an ulcer on the cornea.

The doctors and nurses have been just terrific so far, and Mandy continues to slowly gain more strength. Slow but steady progress.

April 8 - 5 pm - The Tumor is Out!

Talked with Drs Shelton and Reichman and they indicated the surgery was very successful to this point. They were able to remove the entire tumor and confirmed that it was a big, benign acoustic neuroma, which means it is not cancerous. As they monitored the facial nerve, they indicated that it was functioning well, but she will have some facial weakness for a while (droopy eye and smile). However, they indicated they believe the odds of it returning to full function and healing completely are very good.

They were true to their word with the head shaving. She has some of the side and back on the right-side ear area shaved, but other than that a full head of hair and she looks great. Granted, there is a huge gauze wrap around her head and the right side where they went in behind the ear, but I think she looks great.

As Mandy wakes up, she's apparently going to have to deal with some intense nausea and vertigo because the balance nerve on the right side was wrecked by the tumor and its removal. The only way to improve is for her to get up and try walking around so the body can adjust. I have to play bad guy for the next few days and try to get her out of bed when that's the last thing she'll want to do. Hopefully she doesn't remember much of that part.

We have been very blessed to be at this point. Your prayers and thoughts have been so helpful, and I know they will be therapeutic as Mandy goes through the difficult recovery process. We are so thankful for friends and family that have expressed love and concern, and have been so caring. We're not out of the woods yet, but I think there is a clearing ahead!

April 8 - 3 pm - Second Update

Amanda is still in surgery. The OR says she is in stable condition, but because of the size of the tumor it's taking longer than initially expected to remove it. We don't get detailed updates - just the basics. I suppose I would rather have them focusing on surgery right now instead of making small talk on the phone. I'm just anxious for Mandy to be out of surgery and on the road to recovery.

April 8 - 11:30 am - First Update

Just got a call from the nurse in the OR. His quote is, "Things are going fine. Just working on taking the tumor out right now." Feels like a lame update, but the going fine part is great news to me. I didn't realize the OR would call the waiting room. I feel like I should have had some intelligent follow up question ready - not so much. Back to the waiting game.

April 8 - 8 am - Admitted

We arrived at the hospital at 5:30 am this morning. Amanda was nervous and a little apprehensive, but she was positive as she always is. It was a lot of hurry up and wait while Mandy filled forms and cups, changed into the stylish hospital garb, gave blood, and got an IV started. She decided that contractions from child birth distract you from the discomfort of an IV, because this time she felt it more than in the past. It's still a little hard for her to accept that she goes in with great hearing and will come out deaf in one ear. If anyone will come through this with grace and humor, though, it's Amanda. We parted ways before the head shaving, so no pictures yet. We'll see how much they take off. It's supposed to be only a few inches around the back of the ear. I wish I were still in there with her but they would have to pick me up off the floor once surgery starts so my place is in the waiting room as she goes through the 6-8 hour procedure. I'll update as I get word from the surgeons.

Eve of my Drama

SUNDAY APRIL 7th

On the eve of my drama I don't know what to think. I can't eat anything after midnight so Pete and I are up eating oreos and Cadburry eggs. I understand eating is not going to be appealing when I awake tomorrow so I have to get some of the good things in while I can. I have spent some time rereading all the amazing messages of love that have been sent my way and I am still amazed they are for little me. I find great strength in the lovely things that have been said and want to be the girl that has been talked about. Thank you for the love. Thank you for the prayers. I am not comfortable advertising the way I have but I got to a point that I was fearful and needed everyone praying that things would go well. I have prayed and fasted to feel peace because I realized that comfortable is probably not a realistic goal. Who is "comfortable" with brain surgery? I have prayed for my surgeons and my kids. I pray for Pete.

Now I have a new prayer. My parents were skiing Friday and my Dad had chest pains. He is fine except that he is scheduled for open heart surgery on Thursday. I pray for my Dad and my Mom. I am so lucky, blessed, loved that they drop everything for me. Even with their own issues they are concerned about how to help me. Busy week.





Pete will take over the blog from here. I'm kind of glad. It feels like an English paper with too many teachers grading. :)

St. George

SUNDAY APRIL 7th

It has been a busy week! It is Spring Break for my kids and that has ended up being a tender mercy from Heavenly Father for many reasons. First part of the week was all about cleaning and laundry.  I'm not gonna lie - Mom did most the work.  Actually, some lovely friends (love you friends!) sent their cleaning ladies over for several hours to do all the things I have not done this month.  With a clean house I felt like a huge burden was lifted. My ceiling fans are clean again so I can lie in bed during recovery and not be reminded of the things that should be done. Can't tell you how much that has helped. :)
WEDNESDAY we had a n appt. with the neurosurgeon Dr. Reichman. His office is in the hospital complex that I will be having surgery.  I was doing great in the morning but started to crumble as i took the elevator up and began to feel that this changing from something theoretical that we talk about to something real that I will actually doing in a short time. I am sure Reichman could see my uneasiness because he sat with us for a long time answering questions and waiting till I said I was ready to go. He was very patient and kind. The quote from that visit came after Pete mentioned the tumor pressing against the brain stem. Dr. Reichman said, "It's not pushing against it, it's SMASHING it." Dr. Reichman also was great perspective to afterlife, so to speak. He had the same tumor, smaller size, when he was in med school. The same operation left him with no hearing. It doesn't really effect him unless it is so dark he can't see then he can get dizzy. He is still an excellent skier (he just got back from Alaska and some very steep terrain) and very active.

THURSDAY was a final visit to Dr. Shelton. I was still fragile at that point and red eyed. Again, Dr. Shelton was very comforting and patient. After the visit I went to see my dad where he gave me a blessing. It did give me comfort.

We had planned a trip to California for Spring Break but cut back due to circumstances.  St. George is 4 hours south and Matt, Pete's brother and Michelle, Pete's sister, were both going with their families and it is a Spring Break tradition so we wanted to go.We left Thur evening and it felt so good to be leaving town and some of our worries for a couple days. Pete and I both love road trips.

We hit the pool and parks. We did some rock exploring which everyone loved. Had someone else cook for us for dinner and enjoyed the family tradition of custard (like ice cream, but better!) It has been great to feel the sun.

The Crack.
 We went about 50meters between these walls of rocks as it took us from the bottom of the canyon to the top. Even Christian did it.

 'h



Christian's "H"

April 8th is the day.

MARCH 28th

Christian and his souvenir.

Christian loves to smell things. Food, toys, clothes, ski helmets. I have caught him smelling all of these. Friday I was with friends Jacquie and Kim and he was playing outside and found an air soft gun pellet.  He looked at it and asked if he could eat it. I said no, it isn't candy it's a toy. He looked at it and then smelled it to perform his own test of edibility. He looked concerned when it went straight up his nose.  He tried to get it out but only pushed it further.  I told the girls I couldn't believe how many times I am going to the doctor this month.  Jacquie said a Dr told a friend when something goes up the nose you can blow in the mouth to get it out. So, I pinched his other nostril and blew into Christian's mouth. The pellet flew out like a rocket. Disaster averted.

After weeks of deliberation and prayer, we have decided to have Dr. Shelton and M. Reichman perform the surgery on Monday April 8th. It will be at the new hospital (IMC) in Murray, Utah about 30 min  from our house.  I am happy to stay in Utah to be close to the kids, as well as, recover at home instead of a hotel.  I will visit both surgeons one more time before I go in.  I am really excited to have an end date to work towards.  The last couple of days have been hard physically so I am glad to think I will feel better soon.

The tumor has been growing 15-20 years so I am nervous to wake up a different person. I have made Pete triple pinkie swear he will tell me if he's sees a personalty change. Other than that I am more anxious than nervous. Bring on the Jello!

...Comes in Threes.

MARCH 24 (SUNDAY)

Last week PJ was at a soccer birthday party playing goalie and was the victim of a "13 year old brother" who drilled one into the net. As Pj reached out to get a hand on the ball it bent his wrist back.  X-ray confirmed, it was broken. Uncle Mike, knowing PJ and sports are one in the same, said he should get an exo splint. A splint that is molded to your arm and that collegiate athletes, as well as others, wear so they can still participate. It is a cool little gadget and so much less obtrusive than the typical fiberglass. The trainer (yep, went to a legit sports medicine office) that fit it to him said she doesn't give it to kids his age because they can take it off.  After promising good behavior he was excited to show everyone his "sports" cast.

 

Pete and Sydney have not felt great and members of the extended family have had strep recently so we made a visit to the Dr.'s to get a test. I came with so I could take Syd home and Pete could go to a meeting.  When they both came back positive, I took a test. I was positive, too. So we have our own little pharmacy and we are watching the other kids closely.

My eyeballs kind of look creepy!

We talked with the kids a little more today about the surgery. Today was the first time they heard about the hearing loss that accompanies the surgery. Sweet Sam got emotional about Mom losing the hearing in her right ear. He's always been a boy with a tender heart, and his emotions come to the surface when he senses something difficult for someone else or he relates a hard situation to someone he loves. I love that sweet kid!

Front view looking "through" my face (I think)

Here are a few more MRI photos with Gadolinium and a contrast agent, which causes the tumor to almost "glow". This makes it easier to spot and detect, but I think the surgeons have seen enough of these that they already know what they're looking for. The wait and prep continues.

Great News!

Thursday March 21
Sorry I am later than I promised. It has been a very busy week with PJ and Lily in the school play. "The Wizard of Oz" has been running Tue-Fri and is a serious production. The line starts forming at 5 and the play begins at 7! It ends late so it has caused much difficulty in getting up in the morning. But oh, so fun!

Flying Monkey and Emeraldette

So the great news is...Dunkin Donuts is coming to Salt Lake!!! Really!!! I know, right! Many times I have had conversations about my long desired dream. I saw the building being constructed downtown and yelled so loud that Pete almost had a heart attack. The Day just kept getting better when I met Dr. Shelton. Dr. Mike had called and talked to him about me so his office fit me in. We really liked him and feel very good about his resume and our visit. We have cancelled tomorrow's surgery with Howard Reichman and scheduled April 8th with Dr. Shelton and Mark Reichman, Neurologist (yes, they are brothers and both are excellent skiers.)

Dr. Shelton was trained by Dr. Brackmann at The House Institute and is an Otolaryngologist like Brackmann.  Basically, that means that they are ENT surgeons.  Dr. Shelton does around 50 AN's a year so he is familiar with the procedure. Dr. M. Reichman specializes in Skull Base procedures and also comes highly recommended. Shelton would do areas around nerves and Reichman would do the brain stem area. 6-8 hours should be all they need. :)

I also had a hearing test.  I felt a little pressure like it was the ACT's or something, but it ended up a much more enjoyable experience.  It confirmed that I have excellent hearing in both ears.  I think I was hoping that I would be more deaf than I realized and then it wouldn't be so traumatic losing my hearing. Not so. I also learned that the reason I had no chance of hearing in my right ear after the surgery is because the tumor is so large it is surrounding the hearing nerve.  When the tumor goes, so will the blood supply which will be a shared source for the tumor and hearing nerve. Therefore, the hearing will go. I've had my ups and downs with this.  It certainly isn't like losing a limb, but a couple times I have struggled with it.

I have been studying about faith and how it applies to me, or rather, how I should apply to it. I began to wonder if I did have faith in the things I have so long believed. I have always believed that I will be resurrected and my body perfected, therfore, I would hear again. In the grand picture, this life is relatively short, so I should be able to deal with it.

But I have questioned this and also considered that if this is not true and this life is all there is, then my experience here is everything and losing hearing is a devastating blow. I will have been cheated.

I have really been honest with myself and thought about this for some time, even fasting with my prayers. I have found that yes, I truly believe there is life after death. I do have hope and I am learning that my faith is stronger than I might have realized and it continues to grow.

I'm still trying to make sense of it all so I can be somewhat prepared, if that is possible. As I was saying to a friend today, if I were to pick a challenge in life, this isn't a bad one to choose.

3rd and 4th Opinions

MARCH 15 (FRIDAY)

As I reread my first post, I notice that spell check is not automated and I have been conditioned to assume it is. I'll work on that.  Also, I am by no means a Dr. or anything close to it. Therefore, there will be mistakes and things that I get plane wrong. Feel free to correct/inform me or let it slide. :)

Dr. Cosgrave had a patient that had an AN removed several years ago by 2 Dr's at University of Utah Hospital. 1 doctor wanted to do translabrynthe and the other sub occipital. I have an appt. with Dr. Shelton on Thur. The other, Dr. Thompson, has since gone to University of Michigan (shout out to my Ann Arbor peeps!)  Dr. Thompson received my MRI and called me.  He thought it looked like an AN but thought there was an "outside chance" it is a meningianoma. (Meningianoma is a tumor that originates from the brain or the skull lining.) He said he would do a posterior fossa/depressurization, get as much as they could and then come back a few weeks later and finish the sensitive nerve area with a fresh start.  The surgery would be so long he wouldn't want to risk a mistake do to fatigue. The chance of hearing is very small but it is worth trying. He was very kind and indicated that if I wanted to come out to MI he would be glad to have me.

MARCH 16  Interestingly enough, I have asked each Dr. if I should stop playing soccer. (Pete and I play with several family members. we are in the middle of a season right now.)  Each one did not hesitate to say "No. Keep going." So I have.

A picture of Pete after a game is far better art than one of me.

In the Beginning.....

I started this, not because I have writing skills that will keep you engaged, and not to show off my techie skills. (You can already seen through that.) This is an attempt to keep people informed. If you want the details you can visit this site and then those who do not will be saved from constant texts, emails or newsletters. You are always welcome to call, text or email me. I will never see that as anything but lovely. :)

First, Thank you! I appreciate all your prayers and concern on my behalf. It is truly overwhelming. I had gone 2 weeks with no tears but I finally broke down when I saw that Pete's cousin in Boston had emailed. Pete asked what it said, but I had not even read it yet. Just knowing she was concerned brought me to humbling tears. Thanks for all the love you have shown to our family in all its forms. Thank You.


I will start with a timeline of sorts:

OCTOBER 2012 I began random incidents of shooting, electric, horrible pain on my right jawline. Over a week I rarely ate and was afraid of anything that might trigger it. My Dr. was out of town so the well meaning P.A. was sure it was my teeth (even though I assured her it was not a cavity.) I went to the dentist who sent me to the TMJ specialist who said it might be Trigeminal Neuralgia. This is what my googled self diagnosis was so I  had read up on it. The Suicide Disease. Sounds bad right? My Dr. (shout out to Uncle Mike!) gave me a prespriction for a seizure med, Tegratol. Pain went away and I was feeling better about life. I began regular visits to the Chiropracter for Neuralgia treatment. I was also feeling oh so tight. My neck was messed up! I came out feeling so much better but never could get the tightness to go away completely.

FEBRUARY 14, 2013 I had been concerned about the long term effects of Neuralgia and taking Tegratol. I made an appt with a neuroligist who wanted an MRI scan before our visit. Valentines day I set out to the hosptal. (BTW, great day to go in, everyone was in a great mood because of all the flowers and chocolate. I even heard a barbershop quartet serenading someone down the hall.) As I was leaving the tech asked me when my Dr. appt was to which I answered, the 18th. He nodded his head and said goodbye.

FEBRUARY 15, 2013 Recieved a call that morning from Neurologists office saying, it was not neuralgia so they would cancel the appt. and refer me back to my Family Dr. Right then I knew. It was confemed when Dr./Uncle Mike called and said it was a benign tumor. To be honest I was not surprised. I had many symptoms over the years that made me think something was not right. I attributed it to old age and kids. It seemed too hypochondriac like to think my suspicions were acurate. LIKE:
Soccer girls: do you remember how I would get dizzy in the game and try running into the ground? Literally. Kim: do you remeber my several weeks of ringing in my ears and you tried to help with a wax candle? My kids definately know how I had to have a Coke almost daily trying to soothe headaches etc. Pete is well aware that I regularly ran out of energy, often going down in a blaze of glory so he had to send me to take a nap while he kept things running. And my neck pain? the tumor is so large (3.5cm) it is pushing on everything including the brain stem. For months I press on my skull behind my ear to relieve headache pressure.  Everything adds up. At this point I was so relieved and feeling so free from care. "No Neuralgia!!! A tumor is operated on and then it is gone and life will be normal soon."

FEBRUARY 2013 My parents lived in Downtown Houston and became great friends with Dr. Mims and his wife. He being a nerosurgeon, my mom had me send my MRI (on disk) to him. His feedback was that it probably was an Acustic Neuroma. The best Dr. in the world for this was Dr. Brackmann in LA at the House Institute. If it was his daughter, he would send her there. So I mailed my MRI and a letter to Dr. Brackmann.

We told our kids that Mommy has a problem in her brain and so I need surgery to take it out. They ask a few questions here and there but mostly they can't wait to have sleepovers for a couple weeks. :)

MARCH 4, 2013 My Neurosurgeon in Provo, Dr. Reichman was back from heliskiing so we finally got to meet him. He came highly recommended from everyone in the area. He was great. Pete and he are Loyola Alum so we taked about Chicago for some time. In a nutshell, He said "It is a big tumor in a bad place." He wants to use the subocciptal approach and try to preserve hearing but there is always risk to facial nerves. We scheduled March 23rd to go in. A friend (thanks Rebecca) who had a tumor out 3 weeks before gave me great advice, some on health. Pete and I started a daily dose of cow collostrum and Kefir.

MARCH 6, 2013 Dr, Brackmann in LA called and talked to me about the large tumor and the best thing would be a Translabrynthe approach. He has been publish hundreds of times and he emailed me several chapters of his book that explained it all. After reading and learning what I could Dr. Brackmann called a couple days later. We again talked about the surgery he propsed. He said even though I can hear fine (must AN patients lose hearing and that is how they find the tumor) he has never seen a tumor this big when hearing was saved. I really liked him and more than trust his skill. But I am not ready to concede.

MARCH 2013 After much reading and research this is the easiest way to understand: The tumor is benign and slow growing, therefore we have a little time to sort it out.
There are things like radiation and Gamma Knife etc. but my tumor is too big. It has to be surgery. there are 3 approaches (surgeries) used. One is a Middle Fossa approach but again, too big. so I am left with 2 options:

Translabyrinthine
Pros:
• Oldest approach - longest history.
• An option when there is no useful hearing to preserve.
• Approach facilitates identification of facial nerve for preservation.
• Any size tumor can be removed with this approach.
Con:
• Results are permanent with complete hearing loss in the AN ear.
  
Retrosigmoid/Sub-occipitalPros:
• Possible preservation of hearing - 50% chance of this when the tumor is small to medium size.
• Approach provides a good view of the AN in relation to brainstem• Possible preservation of facial nerve.
• Any size tumor can be removed with this approach.
Cons:
• Hearing preservation decreases if the tumor is large.
• Headaches are a more prevalent post-op side effect.

We know this is too big a decision for ourselves. (The only NOT brain surgeons in the equation.) We are praying and and doing what we can spiritually but I believe part of recieving Gods direction is educating yourself as best as you can. We have sent the MRI to 2 other DR.'s and I have an appt. with an ENT surgeon who specializes in Acustic Neuromas. We are praying for direction continually. Again we appreciate those who have also prayed on our behalf.

I will post links re: AN if you are crazy enough to think this wasn't enough to read.

We will keep you posted!