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