A Journey within a Journey

Can't believe that it's been almost a year since I wrote but we are now on a journey within a journey. 


The inspirational quotes on FB this morning are not helping, I have to go home tomorrow without Z.  I hate an empty house, I hated our empty house when Christina left, now it's happening again.


Z is back at NDA in FL after spending a month at Phx Children's Hospital.  I did not know that high ammonia levels can impact behavior.  I know now after having police and paramedics take Z to the hospital because she was super violent in her room one night at home.  Even though her Depakote levels have always been fine, her ammonia levels were high. Took awhile to figure it out and then she went through horrible detox off Depakote.


We were on the cancer floor because there are no psych beds for Z in the valley. I said more than once that I was envious of those parents especially when Z was in agony when Depakote was stopped.  Cancer kids get a diagnosis, treatment and a prognosis and they get compassion that is often missing with mental illness. One day when she was crying for hours, I told the doctor that they would never let one of the kids with cancer suffer for hours like Z was. 


If there was ever any question whether Depakote helped Z, we now have that answer and that is an overwhelming, yes!   After the detox she is showing full blown mania that defines bipolar.  The only place that is safe to find new medication for Z is back at NDA.


I'm not sure I can ever fully describe those weeks and the behind the scenes dealings with the ever frustrating mental health part of AHCCCS but exactly a month after being admitted we were on a very small jet heading to Florida.  Those who know me, know I'm a Valium flyer but I got on that tiny jet thinking "it's amazing what people do for their kids".


I know it's the best place for her but I don't want to leave without my girl. 

Weird but wonderful

Ok, we have something weird going on here.  We have had periods of really good behavior and genuine happiness with Z. Some of those have been long and we thoroughly enjoy them.  But the last few days have been different.  She is absolutely devouring school tasks with her tutor.  Her reading fluency is better.  And she is choosing to read several books not the usual battle to get through one story. She's using a calculator to do math with ease, rather than an agonizing step by step process.  She is staying with frustrating tasks to the end without behavior.  She is asking to do things that are typically hard for her, like working with the clock. She is grasping new things like learning about plurals and opposites.  She is taking in new signs from the tutor and using more language.  She told Dave tonight that "Riley was sitting on .the bed" and he understood her!  This evening she started singing "5 Little Monkey's Jumping on the Bed", she has not done that since she was 6 or 7 years old.  Those kinds of things have disappeared for her.

She climbed up on the high bar at the gym while the coach and I were chatting and was ready to do a flip up there.  We only had to spot her.  She is swimming under water in our pool.  She's actually skating on one foot and tried to do a spiral and a lunge on her own this week.  She's mastered making her own breakfast including using the microwave.

Weird, right!  I have always spent alot of time thinking about what we can do for Z.  This time is no different.  Do I dare hope that it's a real change or will I be "blindsided" yet again.  So I ask, is this a strange phenomenon of the stars aligning just right?  Or an unusual firing of synapses happening just right?  I think of all the possible reasons like: I stopped the PANDAS meds because we had seen no change and they were making her nauseous. I increased a couple medications slightly. She has been on the folic acid med for about 6 weeks now.  Or Aunt Trish is really sitting on Z's shoulder.  I'm open to any and all thoughts.  You have to think out of the box with Z.

As always, time will tell.  For now, we are loving every minute of our precious girl.

If It's Too Good to be True then...........

It was a long shot but I felt I needed to have Z seen by the neurologist who specializes in PANDAS.  Especially since the doctor was here in Phx (no planes involved)  When I read about PANDAS it seemed to fit but I want answers and hope like every other parent.  So I asked the pediatrician and psychiatrist if I should check it out and they both said yes. It took three months to get the appointment and  I was still thinking that at the appointment the doctor would say "no, Z doesn't fit the profile for PANDAS. Imagine my surprise when the doctor said she thought I was right and Z had enough indicators to start treating her for PANDAS.  Gave me the scripts and protocol and ordered the blood draw that involved 10 vials of blood.  (Z was a trooper during that).

Just when we were feeling really hopeless about her mental health issues that have really taken over our lives, we get a little hope.  I keep thinking "what if.....".  What if this really works and behavior isn't the major focus of her life.  I can't really allow myself to think about it too much because PANDAS is really quite rare.  But like I said to the doctor, Z is just weird enough with so many unanswered issues that maybe, just maybe.

Another glimmer of hope this week too.  There was an interview on NPR about a new diagnosis for a segment of kids with bipolar, called Fear of Harm.  Kids with extreme fears that are manifested by extreme rage and aggression.  A small group of these kids have been treated with Ketamine and it's been a miracle for them.  The Juvenile Bipolar Research has done the study so I got information about it before the interview.  Does that fit Z?  Possibly!  I'd call her behavior on that recent, attempted trip to LA an extreme response, maybe to a fearful situation for her.  But at least it's more hope for kids whose lives are condemned by their extreme behavior.

Might try this trick I heard today, about a young lady who has Rhett's Syndrome.  She has a business size card that she hands out that says she has Rhett's and sometimes her brain makes her have bad behavior.  On the back it explains about Rhett's.  Maybe I can have cards for the next plane ride that I pass out ahead of time as we board the plane, "Hi, I have bipolar disorder and I'm sitting in row 15 and I probably will scream and kick the entire flight.  I'm deaf so I won't know how loud I am.  My behavior will be so bad that you will have to sit in your seat while paramedics and police help my mom get me off the plane when we land.  But sometimes I'm fine.  We're hoping for a good flight. Thanks,  Z   (I will put a very cute picture of her on the card).  I know that's my sick sense of humor but sometimes that and hope from PANDAS keeps me going. 

The Blindside or Blindsided

I started to write this over the holidays when mental health was in the news so much after Newtown.  For those of us that live with someone who is mentally ill,we know that months of wellness are rare.   I think I was "lulled" by how well Z had been doing since she came home last Feb.  She really has been stable and genuinely happy.  Then to see her struggle over the holidays is just heart breaking.  I always have felt that we needed to enjoy those times when she was well and now feeling grateful that we had so many months.  But in reality we have to enjoy the moments because sometimes that as long as it lasts, just moments!  Even though I know that the winter season is always hard, you always wish "this year will be different" then suddenly you are"blindsided".

Today is the last day of spring break and it has not been the break we expected.  Planned a trip to Disneyland, was even optimistic because the last couple weeks it seemed she was getting more stable as spring approached.  I could even handle a short plane trip, even though the last trips have not been good and we don't know why.  What was I thinking?  But armed with extra meds off we go and then "blindsided".  She was violent the entire flight.  She was so happy that morning to be going to Disneyland and staying in a hotel that I did not give the extra meds until it was too late.  Paramedics met our flight and took us by ambulance to the psych ER. Of course, as soon as Z saw the paramedics and police she was adorable, waving and smiling at everyone after I restrained her for an hour and half on the plane.  We got to the ER and I realized that I wasn't even sure where I was, strange city and strange ER.  Everyone was very nice and it came down to: do we zonk her out and I take her back home or do we go on the hotel and hope that next day she will be fine and off to Disney we go.  Opted for the second but we never got out of the hotel.  Tried going to dinner that evening  with the friends we were meeting and I ended up dragging her out of the restaurant and Disney security walked with us back to the hotel.  Blindsided! Thank goodness the hotel had room service.  We could see Disneyland from our hotel window.

The next day it was obvious that part of the problem was that Z was actually sick, congested and throwing up and probably a bladder infection.  I finally gave up and called Dave and he drove over to LA to get us.  I have a harness in my van like on school buses for special needs kids so the trip back wasn't too bad.  A few outbursts but could have been much worse.  Watched six hours of "Make It or Break It" in the van, gymnastics is her current viewing obsession.

I know you're thinking, how long does it take for this mom to learn?  But what you don't realize is that you just keep hoping and hoping that you can create or salvage some moments of normalcy and even fun with your child.  Especially for a child who everything they do is difficult, let's have some fun.  You risk getting "blindsided" just for those few moments of joy and laughter.

While stuck in the hotel room with Z, I was reading a novel that happened to be about a kids' psych unit, how fitting!  In the book a parent said something I have thought but never really wanted to say out loud. I wouldn't wish cancer on anyone but at least kids with cancer have a chance of recovering.  If you have mental illness when your a child, there is not even a chance at a cure or  recovery.  You have to grab those moments of happiness because the future is not bright.  I have said that my goal for Z is that she can stay out of an institution.  And that will be a miracle.  It's bad enough being "blindsided" as the parent, I can't imagine what it's like to be "blindsided" by your own brain at any given moment.  I've seen in Z's medical records that her prognosis is "guarded" which really means "not much hope".  But I keep trying to make her life as normal as I can.  Give her all the opportunities that you would any other child.  Maybe my "Blindside" is that I'm willing to be "blindsided" to grab a moment at Disneyland with Z and Belle.

BFF's

Fall break this week so time to hang out at home with Z.  Watching movies is one of her favorites pass times.  Yesterday we were watching "The Sisterhood of the Traveling Pants" and I found my self teary-eyed.  She has always liked movies with "real people" rather than cartoon characters, which is fine with me.  I used to fall asleep immediately when I went to cartoon movies with Christina.

I was struck when we were watching "Sisterhood" that I have friends and family that I know would drop everything and come if I needed help. I have friends and a sister and a husband that I can call and tell them I need them and they would come, no questions asked.  And I would do the same for them.  Z and all her friends that have disabilities don't have that experience of having a friend that you know would do anything for you.  There are many reasons why she will never experience a "sisterhood" and it seems sad to me.  She is probably not aware, can you miss something you don't understand?  But it's another life experience that will pass her by.

Beside feeling sad for her, I realized that it's another instance where Z depends on us to make sure there will always be someone to take care of her.  And we will.

Random and Miscellaneous

I promised myself that I would start writing again when Z started school.  This is the first time ever that she has asked about school during the summer, she was excited to go back to the Deaf School.  Residential treatment is done, no traveling back and forth, just a normal start to the school year.  There was a new teacher but still a great start!  But just a month into the year, a teacher change!  I swear Z is a magnetic for things to go crazy at a school.  Z handled the second change well and I'm sure it will be fine but another teacher, really!

A week after school started Dave and I left on vacation.  We went to Vancouver, Victoria and Seattle.  It was a great trip with our long time friends.  We saw the sights, ate too much, walked until our feet hurt and for me it was too many boats.  Butchart Gardens is amazing and downtown Seattle was very fun.  I made them all go to the Chihuly Glass exhibit near the Space Needle and it was a so gorgeous, we all loved it!  But Dave and I decided that our next trip is back to Maui!

We were back one day and Z, O and I were off to the White Mountains for the Hands and Voices Family Retreat.  We were "chicken" about staying in the "dorm like" accommodations at the the camp so we got a hotel room.  Z had positive experiences in the kids activities and loved the "go carting" with O.  I did not appreciate the memento I got on the way home, a speeding ticket.  Z did not handle the car ride well and while she was tantruming in the backseat, I got caught by a speed camera. Of course, it would never have happened if she had been her sweet, happy self, right?

Home for a couple weeks and then again Z, O and I are off again.  This time to Dallas, TX for Z to have more GI testing that isn't done in AZ.  We couldn't have done it without O.  She loves Z, handle behavior automatically and Z relies on her for signing.  Bad behavior again on the plane, go figure?  But O and I agreed, it was a "piece of cake", only a two hour flight compared to the five hour flight from Florida.  Everything is relative!  It was good to get the testing done and the doctor did find some issues and still waiting for more results.  It was not fun for any of us.  Poor Z had to have a "clean out" before the testing so we had "poo" flowing freely.  O was a good sport, a great help and we all came home sleep deprived for sure.

In the mean time, Dave had two trips.  His mom had shoulder surgery so he headed off to Madison to be with her.  Home for one day and he's off to Denver for a work training.  Dave in Denver, Z and I in TX and both our cars parked at the airport!

We are all home now and not wanting to leave.  It's amazing how all three of us are looking forward to our routine at home.  School for Z, work for Dave, and what for me, not too sure?

Happiness and Joy

I think all parents would say they " just want their kids to be happy" in their lives.  We're no different.  Dave and I have often talked about how to tell if Z is really happy or if she's manic?  She can get very excited and hyper about her favorite things, going on a trip, eating out, Christina visiting.  Sure, she's happy but there's always this "manic" quality about it.  I've often wondered if that's the best it will be for Z?  I wonder too, if her medications have "dampened" her emotions?

Many times she can be truly excited about something small and it's very genuine.   You get a huge hug and kiss if you get her favorite snack at the grocery store or if you pick up a new shirt at Target or she gets a card in the mail from Grandma with a dollar in it.  It's an innocent, genuine thank you.

Recently, we have seen more and more of her truly joyful side.  There's no doubt it's real happiness and not just the manic side of her mental illness.  It's both sad and hopeful.  Sad that it doesn't happen very often and sad that it's a relatively recent experience. Hopeful, that there is joy for Z.

I first got a glimpse of her genuine, happy side on some of our last passes when she was in residential care.  I tried to capture it with some pictures because it's hard to even describe, we just expect young kids to be happy.  On one of our passes we were having lunch at a hamburger place that Grandpa Archie liked in the Midwest. The restaurant has these silly paper hats and Z really "hammed " it up for me with the hat.  She was so cute and funny and she has this very genuine giggle and laugh!  That laugh is so different from the stressed, forced manic laugh.  You have to know her well to really understand the difference.

This weekend was Fiesta Skate, the largest figure skating competition in AZ.  I've been involved in it for 25 years.  The last few years our Special skaters have participated in the competition.  Some years Z has been in the event and others she wasn't able to skate due to her mental illness.  This year she has been waiting for weeks for the competition, following how her dress was coming along and practicing every week. She would ask each morning if it was the day of the "skating show"?  Saturday was finally the day.  Z was so happy and she continued that genuine joy for the entire morning through getting ready at home and waiting for the events to start at the rink.  She greeted people at the rink and responded to others with a smile and excitement and giggles.  It's hard to explain the significance of this unless you understand how difficult it is for someone with bipolar disorder to maintain their mood and children have rapid cycles. She smiled through her entire skating program.  She was thrilled with the stuffed animals thrown on the ice after she was done.  She stayed around where all the skaters were gathered waiting their turn and was obviously enjoying the moment with her friends.  She knew that awards and pictures came next and was very good waiting her turn. 

After several hours I could see that she was getting tired and was struggling to maintain her emotions and behavior.  But I had this heart warming, rewarding morning and felt privileged to be a part of what seems to have been the longest period of genuine joy that Z has yet to experience.  I hope that she will have many, many more.  She deserves hours, days and years of joy!