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.