Piggies

Gabriel has wanted guinea pigs for a long time.  We finally relented for Christmas and Santa left a letter for all three kids along with a cage and the needed acessories.  The kids were so excited to pick out new family members 

The day after Christmas we went to the pet store and picked out two baby piggies.  As reluctant as I was to get two more pets and have the responsibility, I have to admit, they have grown on me quickly.  They are pretty darn cute.  

Even their little noises are endearing at this point.   It will be fun to get to know their personalities in the coming weeks.   So meet Pica Puppy (the brown one) and Mike Henry (the black and white one)....

Surgery number 8

Every time I sit down to write about a surgery I have coming up, words fail to adequately describe how I am feeling.  I don't want to come across as the needy, whiny person or the friend who is seeking attention either   Yet in some ways I do have some rare moments when I want to talk about my chronic pain and my fear of surgery.  I want to cry and be held.  Other times I don't want to talk about it at all and I want to pretend like I don't have a pseudo-tumor. 

Here it is --- surgery number 8.  Decompression surgery  

My brain surgery will be performed by the same neurosurgeon who performed Alex's surgery.  His surgery was flawless and gives me much hope.  My surgeon has a ton of experience with Chiari decompression as well. 

My fears lie in the fact that it is MY head. Brain surgery is much harder to recover from as an adult and I have many added complications and risk factors.  I've also witnessed my now eleven year old fight for his life when he battled bacterial meningitis after the same surgery developed a cerebrospinal fluid leak  

My complications have been added due to having IIH (idiopathic intracranial hypertension),   The mix of the two conditions has made me a complex zebra in the medical world as stated by three neurologists and a neurosurgeon. 

I have cerebrospinal fluid pooling and my dura is already thinning.  I have a liklihood of losing my eye sight and having my dura leak on its own.  

It is unknown what symptoms will be alleviated, if any after surgery.  Perhaps I will feel great!  Maybe nothing will feel better or just a few symptoms. There is a greater chance than other surgeries that I won't wake up at all or that I won't have my eye sight.  

Today I got the courage, after months of putting it off, to call and schedule the surgery.  I asked for a date in March.  I spoke to the nurse and we discussed the recovery time line and she wanted to make sure I understood the risks and possible complications since I'm one of their zebras. (Why oh why?!)   After we went through the risks, I said, ok Julie, this is the moment when I swear and cry and she said, "yes I know and it's ok."   I adore that woman. 

The recovery time line is brutal -- 3-5 days in icu; 3-6 weeks of doing NOTHING at home. If I've been a good patient and I haven't developed a leak, at six weeks I'll be able to walk again.  3 months, running will be allowed.  6 months - it's possible to see symptoms disappearing but it isn't until 12 months that it's known if the surgery worked.  12 months --  crap!!!   

It isn't the end of the world but I'm scared. It's my head.  He opens my skull and touches my brain!  He even removes a teeny tiny portion   What if that's the portion that makes up the charismatic part of me?!  

Until March, I'll keep on my brave face to the world. Unless you're with me in that unfortunate, crumbling moment, and you see the tears, we will get past it quickly because  I know I'm not a cute crier and I want to continue to love life with all I have right now    

Jessica's Head

I have failed miserably to update my blog.  Life marches on and I couldn't bear to share my soul on here.  I've been given two difficult diagnoses over the past few months and I've taken time to digest the news.  

While the diagnosis isn't terminal, it is serious and with considerable risk.  Rather than curl up in a ball and cry all day, I'm challenging life and savoring all it has to offer.  I'm loving deeper than I ever have, I see colors richer, the world feels more intense. I try to give my time more freely to those I care about because  I realize my time is a precious gift.  

Today the color green has captivated me. The different shades on trees is mesmerizing even as I drive down the highway or sit waiting in a parking lot.  On just one tree, there are numerous shades of one color of green.  It's amazing.  

Yesterday I stood at the beach.  I watched the pelicans float lazily in the sky.  I felt the breeze against my face as the waves roared and crashed into the sandy beach.  The sandpipers scurried across the sand looking for their lunch. 

I study my children's faces and memorize every minute detail.  I watch the way they move and run.  I savor their laughter and enjoy their antics throughout the day.  

I'm also challenging life again. I more active by walking with friends regularly.  I volunteer when time allows.  I follow through with doctors appointments and physical therapy.  I find time to climb rock walls, go zip lining, and go on other adrenaline raising adventures. 

I was diagnosed with Chiari months ago and while that diagnosis didn't settle well, I was prepared for it given the boys surgeries and everything we've gone through with them.  I was not prepared to hear that I have IIH in addition to Chiari. 

IIH is idiopathic ibtercranial hypertension. It was known as psuedotumor cerebri, meaning false brain tumor.  I think I read 1:100,000 people are diagnosed with IIH and to have both is even less common.  I am a zebra in the medical world.  

My dura is thin and there is pooling of my cerebrospinal fluid. I'm at risk of going blind and developing hydrocephalus, thus requiring a shunt.  My dura could break on its own and cause a spontaneous leak of cerebrospinal fluid.  This puts me at risk for developing bacterial meningitis which carries its own risk factors.  

There are few treatment options for either IIH or Chiari.  IIH can be treated with spinal taps and medication.  Medication hasn't been recommended for me at this point because they don't know what my pressure is and a spinal tap could make my Chiari worse, meaning it could cause permanent damage.  

Decompression surgery has been recommended where the cerebral tonsil (16 mm herniation) and top vertebral would be removed.  A greater space would be created by opening my dura and putting a patch made of my own skin in its place. 

The outcome of surgery can be anywhere from a typical good outcome to fatality.  I'm at higher risk for a leak which puts me at higher risk for bacterial meningitis.  I'm also at high risk for blindness.  I can either take the chance at feeling better after surgey or continue down this path of chronic pain which also means I'm still at risk for a leak, hydrocephalus, and blindness.  Then there's the risk of fatality.  

It's quite the precarious situation   It wasn't easy to hear the neurosurgery say, "Jessica, you're an interesting case and in the neuro world, that's never a good thing to hear." "Shall we dive right in since you're already familiar with Chiari?" I gulped, bit my lip so I didn't cry, and listened as he explained the above to me.   Time has passed and I'm still digesting the information some days.  Most days I'm at peace because I can't change what is happening.  Other days I'm angry at the world and perhaps one day a month, I want to cry and feel the hot tears fall on my shirt because it proves I am still alive.  And then I get up and find a new adventure before I have to face a risky surgery. 

Scheduled Surgery

I've experienced six surgeries in my life.  Three c-sections, a tubal ligation, appendectomy, and a cholecystectomy completes my list of surgeries. All of these surgeries were performed on an emergency basis.  

As my calendar turns from September to October, the reality of a scheduled surgery smacks me in the face every time I flip the page. If I want to schedule a dinner, an appointment, or an outing with a friend, the reality of surgery and recovery is looming on October 23rd.  

A hysterectomy isn't a hesitation for me.  I've dealt with problems for years and it is a logical option and a choice at this time. I've been in pain for years and it's time for the surgery.   Full recovery should take  six weeks at most, driving privileges after two weeks.

What strikes me harder is that just beyond a hysterectomy is my brain surgery.  My neurosurgeon wants me to have surgery by March.  It seemed far away when he first mentioned March.   However,  as I stare at my calendar, I realize I will be recovered by December.  Then I will deal with the holidays and then in full swing with life through January and February, and March will be here before I know it. 

My head will have a massive zipper scar down the back in less than six months and it doesn't rest well with me.  My anxiety level is high, perhaps higher than when I faced this with both my sons  brain surgeries. 

Instead, I focus on accomplishing things I have wanted to do for a while.  I conquered my fear of heights by climbing a rock wall.  

Even though I am crossing off a bucket list, I also enjoy the little things in life lately. I tend to memorize my children's faces  and listen to their little voices.  I stare at the colors of the sky and notice the leaves on the trees.  The warmth of the sun on my face is intoxicating.  It really is a wonderful life.  

Three Of Us

Last Thursday, we took Alex to his appointment with the Chiari specialist in Orlando. This doctor is also a neurosurgeon. After the eight hours of MRIs, where Alex refused sedation. it was time to discuss cerebrospinal fluid blockage, arachnoid webs, cysts, and asymmetrical ventricles. I have far more knowledge of the brain than I ever thought necessary.

This doctor is Alex's 10th specialist that he has seen since October. We've met with so many different specialists, tested him for different diseases and problems, and discussed his symptoms. Yet chiari is the only problem we've found.
Alex's fluid blockage and cerebral tonsils looked the same as the prior MRI.
Once the MRI didn't show any remarkable changes, then the neurosurgeon discussed symptoms. Quality of life is taken into consideration as we discussed our notebook full of symptoms. Page after page lists gagging, dizziness, headaches, leg and foot pain, hand and arm pain, body weakness, neck pain, temperature regulation issues, screaming, and nose bleeds.
The neurosurgeon weighed the risks and benefits with us. Alex has a 50% chance of surgery working and a 10% risk of a leak after surgery with further complications. I was ready to walk out the door and continue seeking answers for him. But where would we go? We've seen every specialist recommended to us and the only other option is to wait a couple years to receive a blanket type diagnosis that simply means he has chronic pain and needs to continue with pain medication.
That's when the neurosurgeon looked at us and said, "if it was my child, I would do it." The possibility of regaining his quality of life outweighs the risks. We talked a little longer about a surgery date and the details. I asked him, in order to be sure, and so I could hear it again, "would you do this surgery if your child presented the same?" "Yes," he said.
At that moment I let a few tears escape because brain surgery is the answer though it doesn't feel quite right to hand another child over to have their skull cut open. I don't know how I will let my grip go or how I will trust that this stranger will take great care of my son.
In 16 days, that is what I will do. I will have faith in the doctor's training and experience. I will trust that my friends and family will rally with us. I will hold on to knowing that my son will come home without complications. I have to hold on to that because yesterday, Alex sat next to me crying. When he was able to speak, he told me that he was scared about getting an infection in his brain. I was able to comfort him and talk through his pain but the entire time, the nagging reality pulled at my heart. 

At the end of Alex's appointment, I told the doctor that I had an MRI a couple years ago. The neurologist thought that I had MS but I was cleared of it. I was diagnosed with fibromyalgia and sjogrens. While I was never comfortable with the diagnosis of fibromyalia, I had a diagnosis. I was glad to be done with testing and moved on with the fact that I could do little about my chronic pain.
The doctor asked to see my MRI, which was just a photo on my phone. It took a second for him to look at the MRI and I was diagnosed with chiari. Yep, there it is. I have chiari. The doctor wants me to get the disc with the MRI, make an appointment with a new neurologist, and then schedule an appointment with him to discuss surgery.
In an effort to compartmentalize my world, I haven't spoken about myself and my symptoms to many people. I have to concentrate on my children. However, several friends have asked me why I thought I had chiari. In some ways, my silence has been misleading.
Over two years ago, my pain got increasingly worse. It has been a strange road. Degenerative discs were found but no real reason for my pain. I tried pain medication that wasn't narcotic-based. I gained a lot of weight but didn't feel better. I was told to walk more, move more, and I would feel better but I didn't. I stopped taking the medication and the chronic pain has continued. 

I have migraines, neck pain, back pain, tingling hands and feet, and sore joints.  I get electrical type shock down my face and body.  I have hot flashes that aren't menopausal related.  I get dizzy and forget things easily.  Some days I can barely walk because it feels like my feet are enormous stumps.  There are numerous pains that come and go and aren't associated with extra weight or age.  

Just over a year ago, the pain was intense.  The ongoing pain caused depression that I haven't been able to overcome completely.   It's difficult to love life when your day is full of pain, even if I have a beautiful life.  I confided in a few people about what was going on, and spoke to my primary doctor.  Venting, crying, smiling through the pain but nothing really helped.  

Now I know that my brain is herniating into my spinal column.   No wonder I feel like crap.  I'll keep my brave face on for the world that doesn't care to see more but inside I am crumbling.  

New Era...

Certain people have decided that they don't want to be apart of my children's lives. It's not okay but it's their choice. They make no effort to contact the kids. No effort to see them. No effort to show that they give a damn about surgeries and cancer scares.
So we are in a new era. We are surrounding ourselves with people who want to be with the kids. Non-biological aunts and uncles and a grandma and grandpa thrown in (but hopefully we will be in WI soon to see their biological grandparents).
It isn't about stuff - it's about being present. Making time and showing that you care for these tender-hearted, sweet beings. My job is to protect their hearts and I will do it until I can no longer.
So material things are being thrown out. They no longer ask about you. You are no longer there and anything that would make me explain that to them in a way they can understand is going in the trash. I am not doing it to be malicious, but rather, to protect them.
They will be raised without the knowledge that you just don't care. They don't need to know that you don't value them enough to take time for them. They will be raised to know they are loved beyond measure, that autism is not too much for us. That we won't abandon them for poor choices, or for harsh words, or the truth. We will stand by them and love them, and they won't get thrown in a group home because the responsibility is too great.
You are missing out and while you live in a fantasy that your world is perfect and fine, you know deep down that your choices are wrong. It's all your problem. You are missing out. It's your lies and deceit and frankly, my dear, I don't give a damn any more.

New Cloth

Two of my friends have painting businesses.  I love their work and we actually met through my purchases.  I'm adding turquoise to our living room as Gabriel becomes less demanding about the color red. 

 Hooray for a house with less red!  Red is fine but it is not easy to work with when it is everywhere.  Over three years later and I can get different colors.  Oh the joys of autism are never ending. 

I changed the black and white prints to this bright turquoise print.  Now the bench and chair match and that's quite exciting to me.  I was surprised at how dirty the cloth was when I removed it.  Truly disturbing how filthy cloth gets in a matter of years. 

It was more time consuming than I imagined   Removing a zillion staples and then running out of staples, purchasing the wrong ones, etc made it a longer project than anticipated.  Clearly, I'm. It an upholsterer by nature.