Clearing Hurdles...

Dear All,

Meara is doing great. Friday morning she had PT and OT in the therapy gym and she was tossing a beach ball back and forth (catching with both hands). Mr. B would be proud. She was also able to walk up and down stairs (4 steps) by herself using the hand rail. Truly amazing considering we thought she'd lose her supplemental motor in both legs and that she'd need at least a week of intense PT to get it back. From a therapy standpoint she's cleared to go home.

Neurosurgery is close to clearing Meara to go home. Her incision is healing well and the swelling on her right side is starting to go away. The fluid buildup on the right side of her face gets absorbed into her head and into the body so usually there isn't a drain needed. Last surgery we needed one because of the infection.

Meara also has been going to the bathroom like normal starting this morning. That was also a hurdle to clear for discharge so woohoo! 

Basically the only things that are keeping us here are trying to get her to eat more, see if we can wean down to the Tylenol and ibuprofen (and off the heavy meds like Oxy and the steroid for swelling), and then see what the neurologists want to do in terms of meds/treatment for the current seizures.

We still aren't giving up hope. I've been sleeping with Meara in the hospital bed to keep track of her seizures. I didn't wake up as much last night, maybe two or three I counted. I'm hoping that I didn't sleep through others. We are holding out hope that the seizures are decreasing in frequency. Keep believing. 

Again, we are so grateful for all of you rooting Meara and our family on. It is such a huge source of strength. It really does take a village. I'm honest enough to recognize and appreciate that there is no way Megan and I could do this alone. Every single one of you that has reached out through all of these avenues have contributed to the strength and courage that our family and precious daughter have felt  throughout this current phase in Meara's journey.

More updates coming...likely tomorrow when we know more.

Love and peace to all of you,

Aaron & Megan

Finally upstairs...

Dear All,

We are finally upstairs.  We were transferred from the PICU around 5:00pm.  Meara is doing great.  She has motor function, walking to and from the bathroom on both legs.  Her head hurts pretty bad but she's got a good cocktail of pain meds, steroids (for swelling), and stuff for the nausea.  

The good news:  Meara has motor function and she is herself.  She is talking like normal and remembers everything.  

The challenging news:  she is still having seizures.  Obviously, we were hoping for control right away.  We are not giving up hope.  We are not giving up on her having seizure control.  Some of the neurologists feel that there is a "window of time" after surgery where seizures occur due to the brain settling in, trauma from surgery, extra blood, etc. and there is a possibility of control after that.  There is a family on the unit where their child seized for six days after surgery and now they have had ten days of control. 

We are not giving up hope that this surgery has worked.  We are staying positive that Meara's brain is getting used to the new normal.  We believe this.

Some of the things we are grateful for:  Meara.  Her beautiful self that has endured the unthinkable and yet has remained wild and amazing Meara.  We are also grateful for my parents who are here to take care of Ainsley.  My Dad takes Ainsley to the park every day and my Mom gives extra special attention to Meara when visiting at the hospital.  We are incredibly grateful for our friends, family, colleagues, and the Foothill family for lifting us up during this time.  Thank you to Cate from There with Care for dropping off a delicious snack bag and for giving me encouragement.  She knows very well the journey we are on and I am grateful for being able to open up to her today.

Personal note, I read a message on the Give Forward site today from a student.  It says "I love you Mr.E…".  I want my students to know that I love them too.  I am not ashamed nor embarrassed to say that I have cried a large amount just from the overwhelming sense of gratitude that I have for the affirmation and encouragement that we have received from the messages on the fundraiser site and from the personal notes given to us in cards, emails, texts, and on Facebook.  

I also want to express my gratitude for the special notes and letters that I have received from my compassionate and caring students at Foothill.  A particular third grade teacher (whom I adore) handed me a envelope and card before I left on Friday.  I opened it today.  A special student in her class named Ruby had this idea to write letters to me.  They are to give us courage when we need it.  They are called BAM! papers because we are supposed to pull the letters out and read them when we really need a lift.  Ruby's was the first one that I read. She writes a whole lot of amazing wisdom in her letter to "Mr. and Mrs. E".  My favorite …"Even though your spirit may be low.  Do not let your heart give way be strong not for me, for Meara, be strong."  and "Though when you go to Meara's room play with her not the kind of play where you play tag, the kind of play like jokes and here is one…".  Ruby, you are a inspiration.  I will not forget this.  Thank you for your amazing idea.  I will make sure to read these letters every day as a source of strength and purpose in all of this.

The generosity of everyone is also incredible and nothing that we could have imagined.  Since we don't know where Meara's future treatment is headed it gives us such confidence moving forward and we can free ourselves of the worry of past, present, and future medical expenses.  You have no idea the freedom that you have given us because of your generosity.  It is and will continue to make a huge huge difference as we continue on this journey.

Some final thoughts on Meara's progress.  She is nauseous every now and then but able to finally eat some tonight.  Tammy was our nurse when we were discharged from last August's surgery.  Tammy was our first nurse this evening when we arrived upstairs.  Meara recognizes most of the nurses and is familiar with all of the staff. 

The head wound will not keep us here.  It only takes a few days for the scalp/skin on her head to fuse.  The stitches will dissolve over time.  It will take a few months for the scab to heal, etc. but it won't keep us in the hospital.  Progress with therapy will be a factor and so will her treatment plan regarding any seizure activity.  She is eating tonight so that is good.  She's got to be able to eat and go to the bathroom like normal in order to be discharged as well.  

We will continue to update daily while we are here in the hospital if that is okay.

Love and gratitude to all.  Thank you for being such a important part of Meara's journey.

Peace and all our love,

Aaron & Megan

PICU for the night...

Dear All,

We are up in the PICU and Meara is on some heavy meds for pain and for nausea related to coming off of the anesthesia.  She is in some major pain from the pressure build up in her head and the incision site.  We are still trying to get the meds dialed in right but this was the same as the last two times so the pain isn't a big surprise.  She's being very brave and strong.

Meara is able to move her legs and both arms and hands.  We were expecting motor loss in her legs so this is really promising.  She will still be weak for sure but hopefully it means that we can start physical therapy stronger and make gains faster.  

The surgeon made the decision while in surgery to entirely disconnect the frontal lobe (on her right side) and only resect the portion that appeared as abnormal tissue.  This means that her frontal lobe is gone in terms of use but physically a large portion of the tissue remains.  The portion that they resected was sent for testing.  The surgeon said that everything went exactly as he wanted and very smoothly.  

The surgeon was able to avoid her primary motor strip entirely (amazing news!) because scar tissue from the previous surgery helped him locate that area.  We fully expect weakness on her left side but seeing her motor function is a huge confidence boost.  

The neurologist, nurse practitioners, surgeon, and nurses have all checked in on her here in the PICU and are happy with how she is responding.

We will be in the PICU overnight and then be transferred to the sixth floor tomorrow.  

Once gain, Megan and I want to thank you for the incredible support that you have provided us.  Personal correspondence will come, we promise!  For now, hopefully the blog and this update on the GiveForward site will be enough to keep us connected while we make these transitions.

All our love and gratitude,

Aaron & Megan

PICU - Post Surgery

Hi All,

Meara is in the PICU and resting.  She smiled when I mentioned armpits and she smiled when I told her Ainsley was on her way with Grandma and Pop Pop to visit.

We are holding her hands and waiting for her to wake up.  Right now, she sort of drifts in and out.

We will post more after the team of doctors have come in to do an assessment and give us more information.

Thank you everyone for lifting Meara and our family up in love and light.

Much Love and Gratitude,
Aaron & Megan

Surgery Update

UPDATE: 12:45pm

The OR nurse just called to let us know that the surgeon has finished resecting the lesion and they will begin the process of closing her back up.  The nurse said that Meara is doing great and that everything went smoothly.  I asked if the surgeon got all of the affected area out that he wanted and he said his impression was yes.

The surgeon will meet with us around 1:45-2:00pm to go over what happened and how everything went.  Meara will be transported to the PICU for the night and then we go from there.  We'll get to see her soon.

I'll post a picture of her as soon as I can get one.  Thanks to James and Chris for keeping us company and helping pass the time.

We feel the love, we see the purple, and we are embracing all of the light.  Meara is enveloped by all of your strong prayers, well wishes, and support.

Much love to everyone,
Aaron & Megan


-------------------------------------

Meara went back in to the OR at 7:50am.  She was laughing and joking with all of the doctors as they made their rounds into the pre-op exam to go through the surgery checklist with her.  All of the doctors and nurses were super nice and made a point of connecting with her.

Meara was smiling and laying still on the OR bed while they were putting the mask on her.  She fell asleep quickly.  Since this is our third time going through this scenario I was able to hold back the tears until after she fell asleep.  I made it halfway through the surgery wing before it unleashed.  Belinda, our super receptionist out front gave us a huge bear hug when we walked out.

Two awesome surprises, our friends Chris Short and James Brittenham showed up to keep us company.

The OR nurse called at 10:25 to give an update.  The surgeon started at 10:10.  Meara's vitals are good and stable.  She's doing great.

More when we have it...

Love to all,
Aaron & Megan

Pre-Op and Peace for Tomorrow...

(This was also posted to the GiveForward site)

We are feeling so loved and supported by our family, friends, colleagues and students.  To say that we are overwhelmed by the outpouring of support is an understatement.  You have given our family a new beginning.  The ability to let go, to focus on helping Meara get through this next part of her journey.  We are so incredibly blessed to be surrounded by your love, generosity, and compassion. Thank you is not enough to express the depth of our gratitude.

Today we took Meara to children's for a CTscan, blood work and nurses visit. 

Meara's surgery is now scheduled for 7:30 tomorrow morning. It will last approximately 6 hours. The surgeon will be removing a part of her frontal lobe and we expect her to lose supplemental motor function in both of her legs.  The doctors are optimistic that she will regain motor function after a week of physical therapy.  She might be weak for awhile.  We know for sure that she will lose visual spatial function but some of her doctors feel that this function can be rewired to a different part of the brain over time.  

After surgery she will be transported up to the ICU where she'll spend at least Wednesday night. She'll be on heavy meds.  Morphine worked really well last time and as soon as she got her dose she was relaxed and at peace. As soon as she is able, they will move Meara upstairs where she'll start her physical therapy and recovery.   

November is Epilepsy Awareness month. If you are willing and able, wear purple tomorrow to support Meara and the over 65 million people who live with epilepsy every day.

We love all of you and we are so incredibly humbled by the words of affirmation, the financial support, and the prayers and positive thoughts that you have sent our way.  We feel strong.  Meara is strong.  Although the idea of this type of experience can take your breath away we have been through this before and know what kind of things to expect.  Meara knows what is going to happen and she is being incredibly brave about the whole situation.  She knows she is loved and we've shared all of your thoughts and words of encouragement with her.  She knows she has a team underneath her lifting her up.  From deep down in the depths of our hearts…thank you for supporting our family. Words cannot possibly express our immense gratitude for all of you in our lives.

We will be posting updates starting at 7:30 tomorrow morning.  The nurses usually call us from the OR every couple hours to give us updates on how the surgery is progressing.  I will try to update the blog then.  As soon as she is moved to ICU we will continue to update as well.

She will do well.  She is surrounded by love and light and she is strong.  Peace to all of you.

All our love,

Aaron & Megan

Preparing for Surgery...

Awake and tuned in.  That's what I would call this past week.  Moving past the exhaustion and feeling the strength that comes from turning in and just hitching a ride on the gentle waves that are coming our way.

You know, life sure isn't easy.  And I'm not talking about traffic or stale coffee.  I'm talking about the really difficult stuff.  Like deciding to put our precious daughter through another brain surgery.  Or reconciling the fact that my baby brother passed away at the age of 27.  

But what I've decided is that it is worth living.  Because as much as these things hurt, bringing me down to the cold, unrelenting and punishing pavement, scraping my bloody knees...there isn't anything else that can possibly remind me of how lucky we are to be surrounded by love...and compassion.

There are those of you that have reached out to us this past week or so and it has reminded me that life doesn't have to be easy.  We just have to wake up and not take a single thing for granted. 

There is hope that lives in each and every one of us.  We can choose to share that hope.  We can choose to reach out and take a chance on someone.  Take a chance and be honest and vulnerable.  Like a gospel prayer that lives in the sweet melody of unbridled suffering and loss.  It reigns in each one of us.  And it can save lives.  It can inspire strangers.  It can heal relationships.  It is a sweet reminder that we all need connection in order to survive this complicated and desperate world that is doing everything it can to keep us from really knowing each other.  I mean really knowing each other.

Thank you for being there for my family.  Thank you for reaching out and showing your love.  Meara is running into the arms of each and every one of you.  She is ringing a beautiful message into every one of our souls…and bringing us closer to each other and the sense of worth that we all desire.

I will do my best starting on Wednesday (November 13) to keep a daily blog on Meara's surgery and recovery.  I will use Facebook to post the blog but otherwise am depending on phone calls, email, or even texts to keep in touch.  Megan has also posted an update on the GiveForward site as well.  Peace to all of you.

Love,

Aaron

Meara's Brave Journey Continues (fundraising page): https://www.giveforward.com/fundraiser/p4d3/mearasbravejourneycontinues