May 2019 - April 2020

At the end of May Anne was moved to Warm Springs Rehabilitation Center over by the Airport.  I had the option for a location closer to the house, however this location serves traumatic brain injuries for the military, so I believe this location is the better option.

Anne is now moving her left eye.  Her right eye is still dilated and fixed and it is patched most of the time so she can see with her left eye.

Overall, Anne has made some progress, but not much.  She is getting physical therapy but often seems too weak to function on her own.  At least there is progress, no matter how small. 

Thank you to everyone that has visited Anne.  My Dad and Marcia, My Mom & Larry, Robin & Clint, Michelle Swartz, MT Silvia and Silvia Anne, Bridget and anyone else I may have missed.

The ophthalmology appointment went as expected.  We knew the hemorrhage was centered along the optical nerve and for some reason caused damage enough to affect Anne’s vision.  Anne’s right eye was fixated up and to the right and also didn’t respond much to light.  The only recommendation that was given was intense eye therapy that included exercises, etc.  The most likely long-term outcome would be that Anne would almost exclusively use her left eye while her right eye would be patched.

The ophthalmology appointment was disappointing, but the ENT appointment was heartbreaking.  The doctor we saw is a leading ENT specialist (and surgeon) in San Antonio.  I described some of the issues Anne was having while the doctor examined Anne.  Anne failed her swallow tests, she could barely speak above a whisper, her mouth always felt like it was freezing.  The doctor explained that all of Anne’s symptoms were caused by her paralysis. She explained that the paralysis ran from the top left side of Anne’s face, diagonally down to the right side of her throat and that her vocal cords were paralyzed.  I had suspected that Anne’s left side of her face was paralyzed a bit.  You could tell if she grinned or smiled the left side was different. But this was the FIRST time any doctor had mentioned paralysis, which included her vocal cords that would explain her failing the swallow tests and lack of speech.  But how the F**K are we 73 days into Anne’s recovery and the word “paralysis” is first being used.  After almost 40 days of speech and eating therapy and not one doctor, therapist, etc EVER mentions it could be paralysis!  I was so mad!  Did all the other people “overlook” this diagnosis?  Were they avoiding this diagnosis?  Why the HELL did they not “see” this.  And then the heartbreaker.  I asked the doctor “How long before Anne starts to improve?”.  The doctor replied, “She won’t”.  The paralysis would be permanent.  Anne and I were crushed, although I believe Anne was already anticipating this news.

I stayed as positive as possible after we left.  I wasn’t going to give up and I wasn’t going to let Anne give up either.   I wasn’t going to accept that Anne could not improve.  I had faith that if we worked hard enough that Anne could make the best of her condition.  She might never eat steak again, but she was already eating some solid food.  Her voice was getting better.  The ENT doctor was going to insert “filler” into her vocal cords to make them stiffer to help the surrounding muscles “help” with her speech.  It wouldn’t be permanent, but it might help.

Anne’s time at Warm Springs was coming to an end.  Why?  Well because she has been there for 30 days, and insurance only approves the initial 30 days.  This is what happened at the PAM Acute Care facility and now at Warm Springs.  Of course, Anne “could” get approved for additional time but that would require the doctors and staff to justify her stay and that would be a lot of paperwork.  So, Anne had to find a longer-term rehabilitation facility.  I was given two options.  The first was another Warm Springs facility that was closer to the house.  It happened to be the same facility Anne’s mother (Gran) went to after she had a stroke.  The other facility was NeuroRestorative.  A company that specialized in Traumatic Brain Injuries (TBI).  NeuroRestorative didn’t have a large location for rehab, so the company rented large homes and converted the rooms into patient bedrooms.  There was a staff person on site 24/7 and a Nurse on-call overnight.  I met with a representative and we toured the two homes and rehab facility, and I felt this was a much better environment for Anne.  However, there was a caveat.  There wasn’t an open bed in San Antonio.  Anne would have to go to Round Rock first.  This was a very difficult decision.  It was unlikely Anne could go to Warm Springs first and transfer later when a bed opened up, therefore I opted for the NeuroRestorative Round Rock location.  It was two hours away and I wasn’t sure how I was going to make this work, but I believed it was the best option.  Anne had Rachel and Elizabeth in Austin.  My parents and sister were in Taylor so I would have help there and MaryJane was in San Antonio to help with Dallas & Dalton.

On June 28th, 2019, I picked up Anne at Warm Springs Thousand Oaks and we drove to NeuroRestorative Round Rock.

Thank you to everyone that has visited Anne this month. Bridget, Cheryl, Toni and anyone else I may have missed.

Anne had the filler procedure on July 10 to try and make her vocal cords rigid and improve her ability to speak.  This was only a temporary solution, but I’m not sure it helped much at all with Anne’s speaking.

Anne was able to leave the facility for a day visit to Elizabeth’s home and visited with Julia, Rachel and their family and Anne enjoyed that visit. Anne’s brother Justin also came to visit.  One day I took Anne to HEB for hair products.  It was the first shopping day since early April.  Next to HEB was a small knick-knack store, which we browsed.  We found two wrought iron crosses, with the word “Faith” on one and “Hope” on the other.  I purchased these and hung them in every room Anne had during her rehabilitation.  They are both hanging in our bedroom today.

I won’t harp on this too much, but it is worth mentioning.  Throughout Anne’s rehab she would hurt herself from time to time.  Falling out of bed is one example.  There were also instances when she would bump her hand in the door while I (or someone) were guiding her wheelchair through a door.  I know this happened to me on a couple of occasions.  At one point Anne had bruises on her hand, although I don’t remember how she got them.  In any case the NeuroRestorative staff informed me they were documenting those bruises on the chance I was purposely injuring (abusing) Anne.  I understood “why” they were notifying me.  I’m sure there are cases where abuse happens.  It stung a bit but I let go; there were too many other things to focus on. 

At the end of the month I went with Dallas and Dalton to Bear Creek for a Webelos Summer Camp for three days.  The campout was exhausting but was a much needed break.  This was the same campout I was at the year before (2018), with the boys, when Anne called to tell us that her mom, Gran, had passed away.

Sunday after the campout we went to see Anne and had a late lunch at BJ’s restaurant, which is one of our favorite places.  We had calamari, chips and queso and the boys had spaghetti.  As we were leaving, the couple sitting behind next to us stopped me and said they were heartbroken watching us and seeing the struggles that Anne was going through and they would pray for us.  It was one of the most touching moments we experienced from total strangers.  I thanked them while holding back tears.  I will always remember the love and compassion these strangers expressed to us.

Anne’s rehab is complex.  She is getting stronger for sure.   Her voice is a bit louder but still at a whisper.  Her routine is mostly physical rehab such as weights and trying to walk on the parallel bars.  She can hold herself up but has no coordination.  Any movement requires someone holding her to prevent a fall.  She eats solid foods, but continues to fail swallow tests.  It is recommended that she goes back to a feeding tube or only eat liquified food.  Anne doesn’t want that and it feels like a backwards move.  I feel that something is wrong and I don’t feel like I’m getting answers from her medical team.  I’m frustrated and tired, but I know Anne is too.

It’s now been over 100 days since Anne’s stroke.  I want to believe the worst is behind us.  I’m praying we can get Anne back to San Antonio soon.

Rachel was able to take Anne to see a urologist and ophthalmologist in Austin.  I knew this would be temporary until Anne got back to San Antonio, but I wanted an evaluation of Anne’s condition.  The urologist didn’t find anything wrong with Anne.  Her brain just was not communicating with the bladder.  Without any explanation, there couldn’t be a prognosis.  Anne’s eye exam was even less productive.  To be honest this particular doctor was not capable of helping Anne.  Anne’s problem was neurological.  Intense therapy was recommended, however I preferred Anne see someone in San Antonio and didn’t want to commit to anything in Austin.

It was becoming increasingly important that Anne return to San Antonio.  NueroRestorative was already having issues with Anne’s insurance.  The insurance approved 30 days of rehabilitation. The insurance company's policy requires a two-week turnaround for any in-patient request.  Their policy is clearly communicated to providers, however NeuroRestorative submits their requests three days prior to the previous order’s expiration.  This results in NueroRestorative “carrying” over Anne’s medical treatment on the risk the request will not be approved.  NueroRestorative’s stance is “why submit a request so early, before the current evaluation is complete”.  It is a conundrum.  It’s sad, but our medical industry is dictated by the insurance industry.  Most patients are treated with a one-size fits all solution.  

On August 6th, I contacted another rehabilitation center in San Antonio and began the process to transfer Anne to this facility.  I notified NeuroRestorative of the pending transfer.  Miraculously, the next day, August 7th, a bed opened up in San Antonio.  I picked Anne up on the morning of the 8th and transferred her NueroRestorative in San Antonio.

Thank God Anne was back in San Antonio!  The 8th was a Thursday, and I was already planning for a weekend home visit.  It had been 118 days since Anne was last home.  There weren't any immediate health concerns with her coming home, however the way the insurance was being paid she couldn't stay the night.  The only real obstacle was that Anne wasn't peeing on her own.  She still needed a catheter to be relieved every four to six hours.  The solution was I had to learn how to insert the catheter and relieve her.  I worked with the Nurse/Tech and learned what I needed to and we setup a home visit for that Saturday, August the 10th.  I picked her up at 8:30 and we drove home.  We were both very excited for this moment. 

When we arrived home, we went inside and wheeled around the kitchen area and then the boys came downstairs to welcome momma home.   We sat around for a few hours and talked.  By this time, I had gotten used to the way she was speaking, and we could converse almost normally.    At times it would be difficult for us to communicate, but mostly we made it work.

For lunch I made Anne a peanut butter & jelly sandwich, without the crust and she had juice to drink.  Anne could eat simple solids but had to be careful the food didn't go down her windpipe.  Around 2:30 it was time to check Anne's bladder.  The nurses would always sit Anne on the toilet just in case she went on her own, but so far she couldn't go on her own.  In any case I took her to our bathroom and helped her onto the toilet.  I stood at the corner of the wall and waited.  All of a sudden, I started hearing a gush of liquid, splashing into water.  It took me about 10 seconds to realize what it was, and I asked Anne "Are you peeing?" and she responded "Yea". OMG, I couldn't believe it.  Anne had not peed on her own for 120 days and her first trip home she finally peed.  I was so excited!  Her brain sent her body the signal to pee, and she did it.  This was such a fantastic sign.  Maybe this meant that her body was healing.  Anne didn't seem to share my excitement but I'm sure she was happy anyway.  From that day on, Anne never needed a catheter again.

Anne came home the next day, Sunday.  In fact, Anne came home almost every weekend in August.  During the week I saw Anne almost every day, sometimes twice a day.  I would go up at lunch and eat with her.  I would go up at the end of the day and have dinner with her when I could.  Some nights I would stay with her at bedtime for an extra hour or so.  Sometimes the boys would come with me and Rachel and Elizabeth came down to visit as well.

One weekend Anne and MJ went to get a Manni and Pedi together.  Unfortunately, Anne didn't enjoy it very much.  Similar to the massage, Anne's body didn't respond to stimulus normally.   She felt the water was too hot and the pressure was too hard.  Anne had become super sensitive to many areas of her body.  She often complained that her mouth was freezing and any liquids, hot or cold, were too much to enjoy.

I was still working fulltime during the day.  I was still the Cubmaster for our Cub Scout Pack.  Planning campouts, running meetings, going to training (BALOO), washing clothes, making meals for the boys.  Everything we would normally be doing.  My schedule was completely full, from 6am to midnight, seven days a week.  I was tired and exhausted much of the time.

August 28th was Wednesday and Anne's 49th birthday.  I took off of work and spent the entire day with Anne at the clinic.  I took her home with me after rehab and we had cake at home with the boys and MaryJane.  I was very happy to have Anne back in San Antonio.  NeuroRestorative Round Rock seemed so long ago.  So many positive things had happened over this month.  I hoped our good luck would continue.

The first couple of weeks were routine.  I spent either lunch or dinner (or both) with Anne during the week and Anne came home on the weekend.  On Friday, September 13th, I spoke with the insurance case manager at NeuroRestorative, who hadn’t heard back from the insurance company for the September period.  Once again I explained to her that our insurance company has a two week turnaround on evaluations and if she expects a response sooner she has to submit the claim sooner.  I was becoming very frustrated with this person.  Anne came home that Saturday and Sunday.  I would pick her up around 8:30 in the morning and have her back at the facility by 7pm.  I would lay with her for an hour or so and then leave and go home by 9pm.  Monday, Sept 16th, the boys had a baseball game and I also had a Cub Scout recruiting event, therefore I wasn’t going to see Anne.  At 4pm I got a phone call from Anne’s case manager at NeuroRestorative, stating that Anne’s insurance had denied her claim for Sept 2nd - 28th and that she would be discharged the following day and that we would be billed for the uncovered portion from the 2nd to the 16th which would be about $45,000.  Of course this was a complete overreaction.  She submitted the claim too late and since it took two weeks she put her company in jeopardy of carrying the cost without approval.  And the insurance company didn’t reject the claim, but requested additional information about the projected medical plan.  It didn’t matter anymore.  Anne still needed a significant amount of care and the staff at NeuroRestorative is excellent.  I wasn’t going to argue with her so I said I would pick up Anne in the morning.

I will never forget that next morning.  I showed up at about 8am.  I walked in while Anne was being wheeled out to the Van.  She asked, barely above a whisper, “What are you doing here?”. I said “Taking you home.  Are you ready to come home?”.  Anne replied, “Yes, Yes, Yes!” and we hugged for about 3 minutes.  I knew Anne wanted to come home.  I wanted her to come home as well, but I wanted it to be under the right circumstances.  Anne wasn’t getting better.  She had minor improvements; speech was clearer but not very loud and she was getting stronger, but she still had no balance or coordination.  As in-patient, Anne would get seven hours of rehab everyday.  Speech, vision, physical and mental therapy.  It was a fantastic program.  But like most programs they are designed for patients that make progress.  Coming home meant Anne wouldn’t get as much attention.

Anne desperately wanted to come home.  Since early July Anne was becoming very negative towards the staff. She would tell me that the staff would mistreat her and talk down to her.  This was contrary to what I was seeing.  I’m not saying the staff was perfect but everyone I came into contact with was very professional.  I’m sure someone could have a bad day and say something negative, but I didn’t think this was something that was happening on a regular basis.  I brought this up to the director and she said it was common for patients to have negative opinions of staff over time but that she would also look into it.  When Anne’s mother (Gran) was in a memory care unit she would often complain about the staff.  We took this as Gran wanting to come back and live with us.  I’m sure these feelings do occur in patients in longer term care.  As Anne continued to complain, I asked her if she was confiding in her therapist, however Anne admitted that she was telling the doctor what she thought the doctor wanted to hear so Anne could be released and sent home.  I installed a camera in her room and would watch and listen for hours at a time and I never heard or saw anything that Anne was describing.  I felt so conflicted.  I should trust and believe in my spouse. 

Anne came home.  She was happy to be in her own bed.  The first night was very rough.  She barely slept and was frequently waking me up, either to take her to the bathroom or just to see if I was awake.  Anne had a watch that would speak the time since she couldn’t read it.  Many times that night she would push the button on the wrist watch to hear the time.  This too woke me up.  I knew after that first night we would have an adjustment period.  I barely slept that first week, but we adjusted and it got better.

Now that Anne was home I had so much to do.  I had to schedule in-home nursing care during the week while I was at work, which isn’t covered by insurance.  Kinda silly that the insurance company can be billed $50,000 for a couple of weeks of in-patient, skilled nursing care, but won’t cover 80 hours at $15 / hour for in-home care.  Only a $48,000 difference.  Whatever.  I also had to schedule out-patient therapy for voice, physical and vision rehabilitation.  I had to coordinate appointments with specific day care nurses that could drive Anne to these appointments.  I filled in where there were gaps.  Late appointments were hard when the boys had baseball or scouts.  This wasn’t impossible, but took quite a bit of coordination.

A few of Anne’s work companions came by to see Anne.  That was very difficult for Anne.  She didn’t want them to see her like that but her boss was obligated to check in on her and he seemed quite concerned.   I was hoping the visit would give Anne some hope about someday returning to work.  I don’t think it had that effect.

I know this is a long entry, but so much happened this month.  Now we are at the hardest part.  I’ve dreaded writing about this since I started in April.  I cry everytime I think of it and I’ll never forget it.  It was Saturday the 21st.  Anne’s first weekend since coming home on Tuesday.  We were in the kitchen, cooking and cleaning, etc.  Anne in her wheelchair, me standing in front of her.  She asked, “Why am I here?  Why am I alive?”.  I told her she was alive because they saved her in Denver and the neurologist said she would make a full recovery.  Anne said, “No, I’m not.  I’m not going to get better.”.  I said, “Of course you are going to get better.  God saved you for a reason.  It’s not going to be easy but you will get better!”.  At this point I’m on my knees, in front of Anne.  Pleading with her to give me a chance to help her get better.  All she keeps saying is “Let me go, please let me go”.  I don’t know how to respond to this.  “Let her go”, what does that mean?  I beg Anne, “Please give me a year.  Give us a chance to help you get better”.  At this point my head is in her lap and I’m sobbing, just begging her to let me help her.  This is not the last time we had this conversation.  In fact this would be a regular occurrence almost every weekend.

Anne had several visitors in September.  Shawna came to town, which was a huge lift to Anne’s spirit.  Shawna is truly Anne’s best friend.  Anne’s brother and sister-in-law also visited.  At times I think Anne dreaded these visits but I know she appreciated them.  She loved being around her friends.  She loved company.  Honestly I needed as much help as I could get to help keep Anne motivated.

Anne had been going to rehabilitation at a hodgepodge of places. Whatever I could find in our network and on our side of town.  I got her started on Acupuncture.  I had no idea if it would work but it was worth a shot.   By this time I had determined that Anne’s brain was having trouble communicating with portions of her body.  I didn’t know much about acupuncture but I believed it focused on nerve endings and if that could stimulate Anne’s body then it was worth a try.  By the end of the month I was able to convince Anne to go back to NeuroRestorative on a half-day basis.  I know she didn’t want to go, but NeuroRestorative has a great program and she can get all her rehabilitation in one place.  Most of Anne’s complaints were about the night staff at the in-patient facility so I’m hoping we can try NeuroRestorative for the next month and see what happens.

Before I end this month’s summary I have to talk about one more thing.  This is similar to the way Anne was reacting to in-patient staff.  How Anne was criticizing the staff for being “mean” to her.  Gran had similar comments about her staff at her memory care unit.  It is hard to rationalize this behavior, but I can understand it.  Anne was in a situation where she was completely dependent on others.  Gran became this way too.  I’m sure this was frustrating to Anne and I believe she became angry and wanted to lash out at others.  I know Anne lashed out at me at times, but I wasn’t the primary focus.  Anne focused on her sister MaryJane (MJ).  MJ was had been living with us for over a year before Anne’s stroke.  Throughout Anne’s “recovery”, she directed her anger at MJ.  MJ was an easy target for Anne and involved less “risk” than focusing her wraith on me or the boys.  I wasn’t (and not) angry with Anne (or Gran).  This is most likely a “normal” reaction.  I am sorry for MJ and the hurt and grief it caused her.  She was an unfair, but easier, target.  MJ handled it with Grace but I’m sure it was hurtful to be the target.  Love you MJ!  I hope you’ve found peace by now.

September was full of changes and chaos.  Emotions were high and low.  I wasn’t about to give up or let Anne get down on herself.  However, I had realized that it wasn’t going to get any easier.

Anne could dress herself.  I would lay her in bed with her clothes and she could put on a shirt, underwear, yoga pants and socks.  However, she could only do this laying down.  If she tried to sit up, she would fall over.  No balance or equilibrium. 

I found a support group, Alamo Area Stroke Support, and I attended a couple of meetings.  I believed it would be important to reach out for help if I needed it, but to be honest I just didn’t have enough time to regularly attend.  My schedule with Anne, kids, Scouts, work, etc, kept me busy from 6m to 10pm.  

On October 22nd, we went and saw a Neuro Ophthalmologist out of the UTSA Medical Center. I was really looking forward to the visit as I hoped to get more insight about Anne’s brain recovery in relation to her vision.  This was also the closest to a Neurologist that we’ve seen since her stroke.  The doctor did a pretty thorough exam, although I was very pleased with his assessment.   Anne's brain injury has likely healed all that it will.  Her vocal cord will likely remain paralyzed, and she will probably never regain her balance meaning she will probably never walk on her own.  Her right eye may only be repaired with surgery; however, she may not be a good candidate for the procedure. 

Of course this was devastating news.  I had hoped for at least a bit of positive news.  It seemed our only hope was continued rehabilitation to improve sight, motor skills, speech, etc.  Anne took this meeting pretty hard, although I don’t think it came as much of a surprise. We ingested what we were told over the next couple of days.  I tried to stay positive and convince Anne that she was going to get to a better place.  A place where she would be able to accept her condition.  One conversation we had while driving to an appointment Anne asked when she would be able to drive again.  As painful as it was, I told her I didn’t think she would ever be able to drive again.  This crushed her.  She broke down and sobbed.  We are going about 60 mph on IH-410 and she tried to jump out of the minivan.  She didn’t have the strength or coordination to actually exit without me stopping her.  She said she would try again when one of the day nurses was driving her.  I pleaded with her not to do this.  It was fair to anyone and would only hurt all of us.  I asked her to give us more time to focus on her rehab and getting better.  I’m sure Anne felt so helpless and knew there wasn’t much she could do on her own.  All I could do was keep pushing forward and pray things would get better.

We had to schedule an IVH filter removal.  Anne had a mesh filter inserted in May to protect against blood clots.  We had to visit a hematologist in Stone Oak.  While we were at the office, I noticed a company that focused on Eye Rehabilitation.  We scheduled appointments for intense eye therapy with this new company.

Halloween is always my favorite time of the year.  I love scary movies, haunted houses and dressing up.  Anne and I would sit in the driveway drinking, cooking and handing out candy on Halloween night.  We would take turns taking the kids down different streets to get candy.  Now they were a bit older they could go off together without us.  I also enjoyed selecting Anne’s costumes each year.  She was always excited about what I was going to outfit her with.  Of course this year would be different, but I still wanted to keep it as normal as possible.  We sat in the driveway as usual.  I also got Anne a Ms. Marvel costume and she looked great in it.  It turned out to be a pretty good evening.

Anne was continuing her rehab.  She had half-days at NeuroRestorative as well as Vision Therapy and Acupuncture, two to three days a week.  In the evenings I would exercise with Anne.  We would perform multiple exercises and weight training on the floor or in a chair. Anne could move her legs and arms, backwards and forward and she was quite strong.  However, there was little coordination.  I installed balance poles in the bathroom, next to the bed and in the living room next to the recliner.  The idea was that Anne could use these poles to steady herself as she transferred from the wheelchair to the bed, recliner, toilet, etc.  At least that was the hope.  In practice this was impossible.  As soon as Anne would pull herself up and stand, she would sway and rock back and forth.  She didn’t have any equilibrium.  At times she would shake and rock and hit her head on the pole.  Someone had to stand with her at all times to ensure she would not fall.  A fall could be devastating if she were to break an arm or leg.  Maybe over time with enough strength Anne could keep herself steady and make a successful transfer.

On November 18th, Anne was scheduled to have the IVH Filter removed.  The filter protects against blood clots.  Anne was now working with my primary care doctor, and he had scheduled the removal of the filter at the same hospital where the filter had been inserted.  We showed up early at the hospital for the outpatient procedure but were turned away because the insurance company did NOT have a pre-authorization request.  I find this completely absurd.  The insurance company approved the filter to be inserted.  The filter has a six-month life span, therefore when the six months have passed ANOTHER authorization is required to have it removed.  Why?  What needs to be pre-authorized?  What is the purpose?  Is the insurance company questioning the need for the procedure?  Why is the insurance company second guessing the doctor’s health prescribing?  Who is actually running our healthcare system?  The doctors or the insurance company? I’ve had this conversation with the insurance company on multiple occasions.  NO ONE can articulate the purpose or reason for it, except say “It’s policy”.  So very frustrating.  We returned a week or so later and the filter was removed.  

Anne’s cousin, “Fun” Suzi, came at the end of the month and we all went to the beach house.  It was a really nice time.  Suzi helped out so much with Anne and the boys.  There was a Fall Carnival in Lake Jackson.  We had all been there a year or two earlier, but I was able to take the boys, and it was fun.  I’ve always liked the cheesy small carnivals.  That weekend went by way too fast.

On the last day of the month, November 30th, we went as a family to get the Christmas tree.  We spent most of that Saturday decorating the tree and the house.

I was utterly dejected as we left the doctor’s office and drove home.  Anne and I didn’t speak much at all, but I could tell she wasn’t as caught off guard as I was by the visit.  I wasn’t satisfied, but I wasn’t ready to throw in the towel.  There were still three months until April and a chance for improvements before then.  I could tell Anne was losing hope and we both wanted changes.  Anne wasn’t happy still attending NeuroRestorative, so we started to look for other options.

Christmas also seemed routine.  Lights, tree, dinner and pies.  We tried to make it as normal as possible.  I don’t really recall what my mood was for most of the day.  I was just going through the motions.

The only New Years celebration we recognized was that December 31st was Anne’s last day with NueroRestorative.  We had already made plans for a new place for 2020.

We also saw a new doctor to discuss possible eye surgery.  The procedure would be similar to addressing a lazy eye where the muscles are constricted to force the eye to a more normal position.  It was a risky procedure in that the correction might not be exact and if there was significant damage to the optical nerve (which there likely was), then Anne’s vision wouldn’t be corrected.  We decided against the surgery but continued the Vision therapy to strengthen her left eye.

Anne has very little balance or control of her limbs.  She could move her arms and legs and was quite strong but couldn't "control" them.  I had installed poles and supports throughout the house so Anne could leverage these to stand and transition to and from her wheelchair.  In all instances she would become completely unbalanced, begin to shake and lose control.  In the bathroom I had to add padding because she could use the support bar to stand, however she would lose control and repeatedly bang her head back and forth against the wall.  This was horrible to witness and dangerous for her.  She could fall, break a bone or injure herself.  She would continue to try but there was never any improvement.  Those are bad memories.

February ended with Dalton crossing over to Troop 911 with Dallas and a council wide campout at Bear Creek.  Anne and I drove up on Saturday and visited with the boys. It was a bright sunny day and not cold at all.  Those are good memories.