Important Stuff-Like Eyes

I was talking to someone who's husband was scheduled to have surgery for an AN. Trying to remember things that would be helpful, I realized I need to add some things to my blog.

Eyecare is sooo important! I now have regular appointments with an eye Dr. to make sure I am taking care of my eye. I should have from the beginning! Because the nerves are compromised my eye doesn't feel how painful the situation really is. It has a permanent scar on the retina now so my vision in my right eye will always be a little blurry.

• After surgery I was given a moisture chamber. I asked a couple eye doctors if I could buy them at their office and they had  never seen them before. I got extras from Dr. Shelton's office and I found them on amazon for about $11.

• I regularly, like several times a day, use eye drops.

• At night, an ointment keeps the eye from drying out.

• A friend gave me her 4 wheeling sunglasses and I have worn them daily ever since. On the beach, on a boat, doing yardwork, etc. You can find similar ones at motorcycle shops or online. They have a foam insert that keeps the wind from drying your eye. I have had 3 different pairs from 7eye. I just replace the foam when it gets worn.

• The air conditioning and heaters are very drying in this desert climate. We installed a humidifier at home which is awesome. But at church, in the car, etc. I would have to wear a
  
  moisture chamber eyepatch. After wearing my sunglasses at night or in church I looked for something new. I found glasses for dry eye that are similar to my sunglasses. I got 2 pair and wear them driving, at night soccer games, fireworks, at home watching sunsets on the porch, airplanes, and at church. The brand is Ziena.  You can get any kind of lens in them. Prescription, transition, or even a clear lens like mine.

• I also sleep with a mask so my husband can use the fan in our bedroom. With research and some trial and error the mask that works for me is also found on amazon. It is Nidra brand. It has a velcro strap so you can adjust the width. The eye cups are firm so there is no pressure on the eye yet it seals well so it is pitch black. 

The Art of Patience

We have FHE (Family Home Evening) every Monday night. Sometimes we have a family council where we talk about schedules, or vacations, or rules. Or it could be an activity like carving pumpkins, or planting the garden. My favorite has been the birthday tradition. We all take a turn telling the birthday person why we love them, appreciate them and even like them! And we always end with some sort of treat. Yesterday, we went out for ice cream. But before that, Pete gave a "lesson" where we read James 1:2-4 and parts of a talk given by Neal A. Maxwell entitled, "Patience" (https://www.lds.org/ensign/1980/10/patience?lang=eng).

We all have expectations and sometimes we are disappointed if things didn't work out like we expected. We sometimes want to play victim and have any emotion we feel appropriate. And feel Justified in that emotion. We talked about some things but here is what i heard: Instead of complaining or being sad at what I am limited with or things I cant do that I loved, find Joy in the life I do have. Joy in things I can do.

His examples were things i had thought of before; a gym meet that didn't end as expected....; mom and dad didn't sign up for our lives to be difficult like this....; our dog having to be put down because of old age. The thing that made me look at things a little deeper was when he mentioned that Christian didn't sign up to be a baby when his mom had surgery. Although, that made me so sad, Pete followed it up with saying in spite of that he still chose to be a happy boy, starting kindergarten and enjoying life.

We all get to look at the wonderful things in life and not add up the unfair things instead. Christian may only be 5 but that is where we can try to be more like a child. Instead of looking for compensation, look for the happy. You'll find whatever you're looking for.

Mount Rushmore

Waterpark with cousins...Awesome!

Door County was CHILLY! We got cool hoodies to stay warm.

January 2015

It must be a while since I have written because it took me SEVERAL minutes to figure out how to get here.

Something very exciting happened this week! Wait for it....I wore heels!!!  Well I don't know if it counts technically because they were tall boots (so they stayed on) but they had 2 in. heels not conservative short wedges. I got to the point that I felt somewhat confident that I wouldn't have a spectacular spill.  I was going out without kids and I could hold on to Pete if I needed. I was anything but graceful but I soooo enjoyed it!

This Aug I went wake boarding with no expectations. I surprised all of us by getting up on the second try. My friend Sara Paul videoed this and then sent it to my mom.

"Who would have thought Amanda would be doing this 1 year ago."

 A day on a boat is always magical!

Although in April my therapist gave me a referral to Dr. Ward I didn't make an appt. until October.  I finally googled him and found he is a plastic surgeon who specializes in facial paralysis doing research for his degree and continuing for University of Utah. I had preconceived notions about my "need" for Botox, therefore it took me several months to see him. As I understand it though, Botox was developed for situations like mine, so, willing to try anything...

I hated the injections and as Pete and I were leaving the office I was certain I would never do it again. The next several days the injections began to take effect and I quickly loved the result. The muscle under my right eye no longer squinted when I smiled; the dimples from paralysis on my chin were gone; my neck no longer strained on my right; the muscles around my smile and forehead on the left were softened making things look more symmetrical. I love it! The number of staring people has dramatically gone down. Not that I mind the questions but most people won't ask.

 MAY                                     AUGUST

 NOVEMBER

  I'm not perfect but more ready to like pictures of myself than I have been for a long time.

I continue to wear a patch (moisture chamber) because my eye dries out here. In Florida, Seattle and other humid climates I hardly use the patch.  I still put eyedrops in. I still walk a little off balance. (People on the cruise we took were concerned about my drinking habits- but I don't drink!) My Mom and Dad regularly take Christian so I can sleep. Pete gets the kids to school in the morning starting at 6 so I can sleep till 9. I have many people making things soooo much easier and cheering us on. Simply put, we are blessed.

unfinished in 2014

A Draft that never resulted in anything and pictures never posted:

• a couple weeks ago I showed Pete and the kids my muscles :) Not very impressive.
• I wore a pony tail for the first time in months (because the shaved part was too short), but was having one of those days and thought the headaches would begin before lunch (because of the pony tail)...but I didn't have one all day. Yay!

Teri read that I wish I had a t-shirt to explain it all so people wouldn't stress about asking...so she sent me one.

BYU football game 2013. Yeah, it was cold.

BBGun target practice 2013 at Grandpa Nettesheim's. I was a good shot BTW.

Love the handicap parking.

In Nov. 2013 we went to WI for Pete's Grandma's birthday and we did some family history.

Just cause you deserve it. 

1 Year!!!! That is a good thing...right!?!'

Where to begin...The first of April was depressing. It was difficult to do anything above the "had to" list. On April 5th & 6th we had General Conference (2 days of apostles and the prophets giving talks, broadcast on TV here, that motivated, uplifted, refocused and everything good.) I especially thought Elder Uchtdorf was speaking to me when he said that gratitude was the catalyst to every Christ like virtue. I wanted to give back but I am not ready in ways that I normally do like babysitting, dinners, room mom, PTA, etc. So I felt like I could work at being grateful. I had been happy at Conference to have my family around me and no schedule, just good thoughts. And after a week of depression I was looking for the cloud to clear but it kept coming back.

On Tuesday April 8th it would be one year since surgery. My kids had spring break that week and it seemed it would be a great day. I had a appointment at the salon, horse therapy, and the kids were mostly packed to go to St. George the next day. But it ended up being the worst of bad days. I won't go into detail but looking back I think a main contributor was the pressure of what we were going to do to celebrate a year. Although I had planned laser tag, bowling and dinner with the family by 3pm I was in bed crying with no desire to go out. Pete was very good to let me blame him and not say anything but just love me and then after I had let it out, he let me sleep.  I woke up and the family was around the fire pit eating s'mores. I hadn't planned to join them but how could I not. It was pure happiness.

We were going south on Thur morning but nothing was holding us back wed afternoon so we told the kids if the car was packed we would get a movie and watch it at home. Halfway up the street to "get the movie" Pete said, "Should we just go to St. George?" After much disbelief the kids were hooping and hollering at that last minute decision.

The sun, and pool, and parks, and eating out were great timing. Pete and I loved it! I think the kids did, too. Pete hadn't had a true vacation in more than a year so it was well appreciated. On Fri we went to a park with the cousins where PJ hit baseballs, the kids played on the slides, Sydney and Lily explored and......I RAN!!! No lie!!! Some of us were kicking the soccer ball around and I was feeling pretty good at my progress when the ball went astray so I ran after it. I was so excited so I ran several times. Pete coached me watching me and telling me things like bend your ankle more and bring your leg up instead of around. It may have been 400 meters total but I ran. I was so excited that I wanted to celebrate but I didn't know how. Pete's brothers spent a couple minutes looking at different options on their phone and knowing I love donuts we decided on "Fractured Prune." It is a real place.   They make your cake donut and glaze it with toppings to order. It was a great place to celebrate.

I played some soccer with the family (kids, cousins, Aunts, Uncles) and was a pillar that people had to go around, but I moved. I don't think I should brag about stopping a 6year old's goal, but there it is. As wrong as it is I am proud of that.

Spring Break is over and it has been a challenge for all of us to accept real life. But we are back. Pete gave the kids a talk saying only 6 more weeks at school so work hard and then it is summer. For me, too.

Facial, Vestibular and Hippo Therapy Part I

There are two things I am not good at: typing and multitasking. Both of these make it less than ideal for blogging.

PART I

I am going to Facial and Vestibular Therapy again Tue Jan 21.  I went in Dec. and Janine measured my face a lot, took pictures and looked to see where I was at.  at one point I wore a new gadget she had as well. Ski goggles that also had a cover for the lens. The cool thing was that the lens was actually a camera that recorded my eyes. We did several tests without and with the cover and I was able to watch the computer after and see my reaction. She gave me several facial exercises as well as treadmill work and I enjoyed the therapist as a person.

She also gave me a copy of an article written by her mentor that explained the rehab for the face.
And a copy of an article written by an AN patient. The story and pictures of the patient were very familiar.

The fact that Dunkin Donuts is only a couple blocks away didn't hurt my mood. ;)

I also started a weekly hippo (horse) therapy. My mom found it and we visited to get the 4-1-1. (does that date me?) I asked Dr. Shelton about it and he asked what the benefits were and I was less than clear or helpful because I didn't know. He then asked if I like riding?
"I love it."
"Then do it - but don't spend a lot of money" he said with a smile.

My facial therapist said she loved Hippo therapy (she knew all about it) and thought it would be wonderful for me. So I tried it.  

The first day I talked with the Hippo Therapist there and told her my goals: to be a normal mom, not being tired all the time, strength to carry my babies up the stairs when they fall asleep, and anything else the horses could provide. She gave me a couple things to work on unrelated to the horse that I hadn't heard. (Standing on my right leg only, like a pelican, at set times, like the grocery line or commercials on a show, and sashaying several feet then changing the lead foot.) She asked about my horse history- western on Arabians-  so she ordered a white Arabian in his 20's named TJ. The horse had a person on the left as well as the right and someone to lead. Having all of them there felt weird. When I climbed on the horse from a ramp I couldn't believe my fear. What used to be natural was not easy. The horse walked and my "seat" was not even. I felt like I was going to fall off for 10 minutes at least. Now I could see why there were so many people and was glad to have them there. I had little more than a blanket for a saddle and tried to get even so I wouldn't fall. I would think I had it until the horse started walking again and I would start to fall again. I used my legs to hold on instead of letting them hang. I realized that equal does not feel the same on both sides. What felt like equal was actually pulling left quite a bit. I learned what was equal even though it didn't feel "right" and was able to mimic the feeling walking after, so I immediately starting walking better. I think one could see the difference and I could surely feel it.

I also did a few exercises to help with balance and limber me up. I put my arms out like a plane and slowly turned my torso with my head till I was parallel with the horse. Then I slowly rotated to the other side.  It sounds simple but it took all of my concentration and I was so tight on the right that I was sore. I did a leg lift thing that made me sore, too.  But I loved it.

As I was telling the therapist last week, I love being on the horse but I also like being able to talk about my "challenges." It feels like it is feedback here instead of complaining and it is ok that it is one sided.

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.