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Hi All,

We are finally home.  Today marked 4 weeks in the hospital.  All worth it.  Plenty to say.  Pictures and video of our departure taken.  But it will have to wait until tomorrow's post.  For now, hitting the pillow and hopefully sleeping.

So much to say regarding our gratitude and appreciation for all of you…soon, very soon.

Love and Gratitude,

Aaron & Megan

Could it be?

Hi All,

Well, I am hoping that this is the last blog we will post from the hospital.  The discharge orders have been given and we have a date with home health tomorrow to discuss the IV meds we are going home with.  Looks like we'll be cruising out of here sometime in the afternoon.

I'm not going to believe it until we are in the car headed home.

Meara's surgery was a success.  She is her normal self, personality in tact.  Everything about her is the Meara we have always known…without the seizures!

Thank you to Christy for taking such good care of our Ainsley this past week.  Thank you to Matt for lending us your better half and thank you to cousins Will and Adaline for making Ainsley happy throughout the day.  We are sad to see you go tomorrow but I know that your Dad is eagerly awaiting your return.  Thanks Matt for giving them up for a week so they could be here to help us.

Chris and Dave came by and brought us dinner, again!  Thanks for the delicious food and for playing candy land with us.

Looking forward to writing tomorrow's blog from our couch at home!  

Love and Gratitude,

Aaron & Megan

No Discharge, White Cell Count Back Up

Hi All,

Pdfff…I spoke too soon.  This morning the surgeon was talking about discharge tomorrow and then by afternoon when the labs came back they reconsidered.  Her white cell count is back up so they said we are here at least through the middle of the week.  

Also, the new antibiotics are giving her massive belly pains so this afternoon was pretty tough.  If the belly pains persist we aren't going to be able to go home on them which begs me to wonder if they switch us to a new antibiotic how long we'll be here for that. 

Meara had speech today and also OT.  After that though the belly pain started in and lasted from about noon until 7:00pm so we didn't get anything accomplished.

Ready to be home.  Ready to be home.  Ready to be home.

Alright, how can I muster up a positive ending…oh, no seizures!  There we go.  That does it.  :)

Deep thought, moment of reflection time:  Weariness is so exhausting!  Trying not to be marooned in listless weather is completely laborsome.  Stress has this gravitational pull that could present itself as endless sometimes.  As the weight increases it feels as though the doors are closing in.   It's like every bone in my body is being dragged down and my knees are getting skinned up on the pavement.  There is literally nothing else to do but rest.  Just rest and learn to revive and receive the self that I'd been neglecting.  I've got to learn to be excessively gentle with myself.  Note to self: please learn to return to yourself.  Please be like the rain that falls slow and free.  It's so stinking hard to do.

Alright, nighty night folks.  Keep bringing that sunshine and lingering of goodness.

Love and Gratitude,

Aaron & Megan

Rumor of Discharge

Hi All,

Meara had another good day today. She started the day with OT, getting dressed and brushing teeth.  When she walked down the hall she saw Aaron getting off the elevator and ran into his arms. She went to speech on her own today and supposedly was talking her therapists ear off.  Then in the afternoon PT took her to a different gym at the other end of the hospital and she walked, galloped and skipped. Meara is showing them all what a strong and vibrant girl she is. We are very proud of her.

The good news is that the fluid has not recollected since the drain was taken out. We will still have to wait a few days for them to decide if they are satisfied with the medicine she is now on. Our nurse spent time with both of us today showing us how to flush Meara's PICC and administer the antibiotics. We are lucky to have some wonderfully patient and understanding nurses.

Chris was treated to a private recital in Meara's room. I guess that's the reward for being the person who has visited the most! They also painted together. Thanks Chris for loving Meara and taking the time to see her so much while we've been here.

Ainsley misses Meara so much. She is always so happy to see her and love on her (not to mention mooching her French fries and watermelon). When she got in her car seat to go home she started crying and was pretty upset the whole way home. We can't wait to be home as a family again. Luckily Ainsley has her cousins at home to play with right now. She is having a great time with Adaline, Will and Aunt Christy.  Thanks for keeping her happy!

Meara and Aaron went down to the cafeteria and had ice cream and read some books together. It is definitely nice that Meara has a little freedom now she only has to be hooked up periodically for her meds.

To quote Master Oogway from Kung Fu Panda, "Yesterday is history. Tomorrow is a mystery. But today is a gift, and that is why it's called the present." We are trying to celebrate each day. Every smile. Every hug. Every word. Every moment. Every day without a seizure. Taking time to be grateful for each day with our girls.

Love and Gratitude,
Megan and Aaron

No more drain and no more bird's nest...

Hi All,

Meara had a really good day.  She skipped most of her pain meds today and she started the new antibiotics.  Neurosurgery removed the drain from her head today and the fluid hasn't built back up yet (knock on wood).  Hopefully if we can go a few days with her not needing another drain put back in then they'll get us out of here.  I'm hoping next week.  

She did a great job at therapy today.  A group of firefighters visited her in the therapy room and gave Meara a firefighter helmet.  The therapists then took her outside to play on the grass and she had a great time.

Meara is back to being her antsy self.  She even got a bath today and Mommy washed her hair for the first time in 24 days.  It was a major bird's nest.  Woot woot!

Her "lefty" keeps making good progress.  She'll have outpatient physical and occupational therapy to continue working on her motor function.  The surgeon remarked when he came by this evening that when she smiled he saw both sides of her mouth arch up in her smile (that wasn't the case until today).  So that is great, maybe it won't take long at all for her brain to rewire the motor loss in her face (knock on wood).

Is it possible to watch Ratatouille this much?  I love food but I'm pretty sure I have every line of this movie memorized at this point.

Thanks everyone for lifting us up!

Love and Gratitude,

Aaron & Megan

Wild Hair and MRI

Hi All,

Another day of pain in the morning and then afternoon therapy and some resemblance of her normal self.  She is doing better each day.

Therapy went well again.  Her "lefty" (it is what the PT and OT calls it) is functioning better too.  There is a picture below of her using it during therapy.

The infectious disease team came in and explained that now that they have properly identified the type of infection they are going to treat it with a different type of antibiotic.  Still no word on when we will get to go home.  

Meara had a MRI this afternoon and it came back normal and not showing anything of concern.

Thanks everyone for the continued prayers and positive thoughts.  

Love and Gratitude,

Aaron & Megan

Three Weeks (Officially)

Hi All,

Another good day.  Meara had productive therapy and she has been laughing at my fart jokes.  Monkey farts to be exact.

She was nauseous most of the day so she really didn't eat until lunch time but she kind of perked up in afternoon therapy.  We are trying to get her to bed earlier in the hopes that she'll feel better when she wakes up.  

We went downstairs to the cafeteria for lunch.  Meara walked most of the way and then she rode in the wagon.

We also got another visit from a doggie!  Sweet!

Christy braved the highways and brought Will, Adaline, and Ainsley to visit today.  Bam!  That is a supermom right there.  Ainsley is loving her cousins.

Thanks to our phantom visitor (Beth) who snuck in during the wee morning to drop off delicious breakfast pastries and delights.  Bam!  

Chris visited too and brought no bake chocolate peanut butter cookies.  Or as the lady at the front desk said to Chris "we used to call those boiled cookies".  Okay.  All I know is that they taste really good.

Still no word on when we get to go home.  Every day she does better the more she earns points so hopefully we are making steps.

Deep thought for today:  i wonder why it is that we are so afraid of losing something.  Fear is crippling.  Yielding is not a weakness, is it?  Or is it a paradox?  You know, like water.  It is one of the most powerful elements here on earth but yet when it runs down stream it bends, finds new pathways, goes around rocks.  It's as if it understands that in order to be strong it must yield and bend to the obstacles in it's way.  I think of Meara and how she has bent, yielded, and gone around the obstacles in front of her.  She didn't destroy the obstacle, she didn't declare war on it.  She simply knew that in order to be strong she must yield.  Does this paradox provide the recipe for peace, for harmony? Does it change the way we live?  To not be in fear but accept that we don't have to live a forceful life in order to be strong and courageous.  I hope to find the simple truths in life so that my daughter will see that there is something more meaningful in life than just the materialistic values that reside on the surface.  Although, perhaps she already knows and lives this and in fact, she is actually my teacher and I am her student.  Hmm…

Love to everyone.

Love and Gratitude,

Aaron & Megan

Tide is Turning

Hi All,

Tide is turning.  This morning Meara woke up at 4am in pain, then woke up again at 6am and threw up after going to the bathroom.  She was up after that and in a bunch of pain all morning.  

Then…she ate a good lunch and warmed up with speech therapy.  She then walked all the way down the hall to physical and occupational therapy and threw a ball with two hands over her head, caught the ball with both hands, crawled on all fours with her fingers extended out.  She did all of this and it was her only real therapy since she's been here.  So, ten minutes into the session the PT said she was going to refer us to outpatient therapy because of how well she is doing!  Bam!  Major morale boost to Megan and I.  Who needs sleep when she shines through.

She'll continue to get therapy while we are here but that won't hold us up in leaving.  Now we are here until they clear up the infection situation.  Basically they need to wait until cultures come back from the lab and the fluid stops draining from her head.  Once that happens we can head home and she'll be on IV antibiotics for about 12 weeks.  She'll have a little fanny pack with a pump and it will be connected to the central line.  Megan and I will administer the meds and do the flushing.  A nurse will come to the house once a week to change the dressing and take blood to make sure the infection is clearing.  The neurosurgery nurse said that she'll be able to return to preschool, ride a bike, and play at the park with the IV in so that is a morale boost as well.

Alright, needed this kind of day.  She's been sleeping since therapy (almost 4 hours) but I've been too ramped up to take advantage and nap.  I've got too much energy from thinking about the progress she made this afternoon.  

Christy and the kids arrived this afternoon.  Megan said that Ainsley loves playing with her cousins already.  We are so happy that they are here to help us with the babe.

As I sit here and write this post I'm listening to this amazing collection of songs that my friend Martin gave me.  I listened to it during the second surgery and I'm returning to it again.  Listening to the song "Cloudy Shoes" by Damien Jurado just about captures it lately.  Thought I would share the lyrics because it just about hits the nail on the head at the moment.

Love and Peace everyone.  Many trials and tribulations in life are painful at the time.  Finding wisdom and meaning in them is what will turn "coal into diamonds".  

  

Love and Gratitude,

Aaron & Megan

"Cloudy Shoes"  by Damien Jurado

I wish that I could float

Float up from the ground

I will never know

What that's like

You have a way about you

I wish that I had

Thought it was impossible

To live and love like you

Funny how we all can change

If we just try to

Thought it was impossible

To live and love like you

One day you will be taller

Taller than the sky

Until that day you will be

Here with us below

Magic will do what magic does

Living in your eyes

Do you think someday soon

You will have the time?

I could use another hand

To help pull me through

Someday theses hospital stays

Get the best of me

Trying to fix my mind

Still trying to fix my mind

Trying to work it out

I'm still trying to fix my mind

Still trying to fix my mind

I'm still trying to fix my mind

Holding Pattern

Hi All, 

Thank you Chris and Dave for watching Ainsley last night.  I know it is a lot of work.  She slept for three hours after you guys left the house so I can tell she didn't sleep much for you.  I hope you got some rest today!  Thanks for being there for us and for loving Ainsley.

Thank you Hannah for watching Ainsley while Megan taught this evening.  The pictures were great!  She had such a great time with you!  We are very grateful for you Hannah.

Megan headed back to work yesterday so she is back to teaching in the evenings.  

Meara is receiving around the clock IV antibiotics.  The infectious disease team came to visit today and described that the same infection that is in her urine is also the one that is between the scalp and bone flap.  They aren't sure how it got to either point but obviously the two are connected in some way.  They will be teaming with the neurosurgery team to watch over Meara's symptoms and progress.  They have ordered a MRI to see what is going on inside.  That might happen Wednesday.  We are stuck here for a undetermined amount of time.  They won't give us a timeline until they figure out what is going on with the infection.  At the least, when we go home at some point they will leave her central line in and we'll have to administer IV antibiotics at home.  I'm thinking I might have to take more time off from work.  We've been here almost three weeks now and I get the sense that we have quite a bit to go.

I want to apologize for the lack of pep in the posts.  Megan and I are just drained.  We expected that by now Meara would be rockin' the therapy and that we'd be headed home this week.  I feel guilty that I'm not as positive as I was the first few weeks.  It just gets harder the more tired we get and the more time we spend here.  The hospital is amazing, the staff is extremely caring and knowledgable.  I don't know what to say.  It's just getting really hard emotionally.

Our sister-in-law Christy, Will, and Adaline (Meara's cousins) are arriving tomorrow to spend a week watching over Ainsley for us.  Thanks Matt and Christy for being there for us.

Thanks for loving us everyone.  Sorry that Meara isn't in visiting condition at the moment.

Love and Gratitude,

Aaron

Infection

Hi All,

Meara had a rough couple of days.  She's had a fever, is in a lot of pain, and has basically been in and out of sleep.  She is still getting up to go to the bathroom which is great and she's walking there.  Her left leg is really coming along and she used her left arm to hold on to the toilet seat and to grab on to my shoulder as she was getting off.  That is really important  to see.  We had to cancel her therapy appointments today because of her pain and her inactivity.  Sorry to everyone who had wanted to visit this weekend.  She's not saying much to us and isn't really awake all that much. 

They have had the drain in her head as of yesterday and quite a bit of fluid has drained since. That is good, it means that the drain is needed.  Even though the grids were sent off for culture after the surgery and they came back without infection the fluid that is draining from her head does indicate infection. They are starting her on IV antibiotics today.  The nurse said it is really effective and will clear up the infection.  How long she'll be on the antibiotics we aren't sure.  Minimum is likely a couple of weeks.  It isn't uncommon for patients with the grids in for longer than a week to have a infection.  Meara's were in for two weeks so it was bound to happen.  The doctors sort of expected it and once the antibiotics are working she should start to feel better and then be more active again.

She's on four different pain meds at the moment and is sleeping nice so hopefully that is helping too.

Aunt Mindy headed home today.  She is an angel.  Thank you Mindy for being there for us and for taking such good care of Ainsley.  Ainsley really loved having Aunt Mindy around.  They developed a really special bond.  We won't ever forget this Mindy.  We are so grateful for you.

To my Foothill Peeps, good luck on your first full week with kids.  Yikes!  You'll do great!  Miss you guys so much.

Thanks everyone for the continued prayers…

Love and Gratitude,

Aaron & Megan

Therapy Begins

Hi All,

Hope everyone had a good Saturday.  Today was rougher than yesterday.  Her swelling on the right side was pretty bad today and she was in a great deal of pain.  They just finished up putting a drain in her head (between the scalp and bone flap).   The drain is connected to a container that will measure how much fluid in draining out.  It uses pressure to drain the fluid.  

Hopefully this will relieve her pain and she'll be able to be more active at her therapy sessions tomorrow.  Today she had speech and PT and OT.  It was during PT/OT that she had a good amount of drainage from her incision area and sort of led to the decision to put the drain in.  

We are officially at the two and a half week mark for hospital stay.  I think we are ready to be home again.  We aren't going to rush this.  Just acknowledging that we are a bit tired and drained.  We were up every 1-2 hours throughout the night taking Meara to the bathroom.  It is a good thing that she is using the bathroom and walking to get there from the bed.

Much love to everyone.  Sorry so short today.  Just really tired and needing a good sleep.

Love and Gratitude,

Aaron & Megan

Recovery

Hi All,

I hope everyone is well. Meara is sleeping. We arrived back upstairs to the EMU around 9:30pm last night. She ate a grilled cheese sandwich yesterday in the ICU and then today she ate a total of six whole grilled cheese sandwiches. She can swallow and drink through a straw so we are feeling optimistic.  She is starting to move her arm and hand a bit.  Not much but enough to know that she has motor movement there.  As the swelling goes down she will begin to get more left movement.  Her right eye is no longer swollen shut. She's doing great.  She is talking in clear sentences and when I show her pictures of her friends she calls out their names and smiles.

The surgeon came in this morning and instructed his team to order the therapy assessment for today.  He says that we are over the hump and is anxious to see us get out of here.  I can sense that he feels very good about her case. The rehab team came by and assessed her.  They will begin tomorrow with intensive PT, OT, and speech therapy to help her get back to her normal pre-surgery self.  We expect that face, tongue, and jaw will never fully recover since that was the part of the brain resected but over time some of the function should come back due to her brain finding new pathways and rewiring.  This is the advantage of her being so young.  The doctors expect shoulder, arm, and hand to fully recover.  Either way, we are just grateful to have her here with us, being her normal self.

So, just hanging out and watching her progress.  I included some pictures from Wednesday afternoon as we were waiting to head down for surgery.  You can see her playing doctor with James ("Mr. B").  There is a picture of Meara after surgery in the ICU, pictures of Ainsley in the ICU waiting room (she is under 2yrs of age so she wasn't allowed to visit Meara while down there), picture of Meara with her teddy bear once we arrived back upstairs, and some more pictures of Ainsley being funny.

Mindy brought Ainsley again today to visit.  We also had a visit from the Army Rugby team.  They gave Meara a foam rugby ball and one of the players shared a special story about his Dad who was sick most of his life.  He handed Meara a green hand puppet frog because his Dad used to carry around a green frog in his pocket for when he felt green.  They are special guys.  Go Army Rugby!

Chris, Dave, and Beth all came and visited with us tonight.  We ordered pizza and played games.  It is wonderful to have such good friends to keep us company here at the hospital.  Oh, and they made us chocolate chip banana bread!  Bam!

While in the ICU there was a family who lost their young child.  He was 2 and had been there for 2 months.  He had multiple organs that were failing but it was his heart that gave out.  We are praying for this family and wrapping them in love.  I can't imagine what they are going through during this most difficult time.  

I also want to ask for prayers for someone in our life who will be starting her own journey through treatment.  Pray that she and her family will have strength and peace throughout. 

Many lives and many journeys.

Thanks again everyone for lifting us up . Thank you for taking the time to pray and send good thoughts to these families.

Love and Gratitude,

Aaron & Megan

At the park with Aunt Mindy