Thursday, May 24, 2012

Airica, You Rock!
May 24, 2009


WOW!  That was all I that I could say today.  Airica was awake, moving around, communicating, and as you can see smiling.  She couldn't talk because of the breathing tube, but she sure could communicate!  I was so happy, laughing and soaking up every minute of her silly self while she was awake.

Today they were also going to turn the settings off on the breathing machine.  She would still be using the breathing tube to make sure that she got oxygen, but as far as the work of breathing, that would be her.  They were very cautious this time before attempting to remove the tube, but I knew it was close.

Once the machine was off it was a little scary.  Her normal breathing was not as calculated and not as perfectly rhythmic like it was on the machine.  But it was her doing it.  Again I was glued to the monitors watching each breath she took on her own.  Praying that she was ready to take on this huge task of breathing...that we sometimes take for granted...but sustains life.

Airica, now breathing on her own, alert, communicating, and smiling, was incredible.  She even wanted to watch Disney Channel again.  She was still in and out of sleep, but when she was a wake she wanted to hold my hand, and make sure that Hannah Montana or Phineas and Ferb was on her TV.  So you can imagine how her little face lit up when I told her that we had bought her favorite movie for her, The Nightmare Before Christmas.  

It had been a very busy, awesome day.  I really felt like I was getting my girl back.  We settled in for the evening, but not before she motioned to me to play her new movie for her.  I put in NBC (as she called it) and before it began my sweet girl was sound asleep.  I smiled, cried some tears of joy, and watched her sleep, and breathe...on her own.


Wednesday, May 23, 2012

Sissy's Pluto Got a Breathing Tube
May 23, 2009


Airica had a good yet eventful day today.  They are not ready to remove her breathing tube yet.  However they turned the settings on the machine all the way down and her body took over and she was breathing on her own.  That was a great thing to see.  It gave us all so much hope.  Sometimes it was feeling like with every step forward there were two steps back.  

I would call today only a side step.  The sores in Airica's mouth from the breathing tube seemed to be getting worse.  It makes sense, since the tube was still in there.  The nurses and RT's decided that they would put the tube in through her nose so that her mouth could heal.  This type of intubation was normally done on small babies, but they were going to try it on Airica.  

The procedure was done very successfully, but not without some practice, and a special demonstration that was done on Pluto.  This was Alyssa's Pluto that she gave to her sister while she was in the hospital.  Airica had that along with my little pillow, the whole time she had been in the hospital.  It was very hard to worry about this procedure after being a part of the comedic intubation of Pluto.  

The nurse, RT, and I actually had a lot of fun and a lot of laughs preparing for the procedure.  It was only going to help her mouth heal.  It seemed like is was going to take a lot of tape...well it did for Pluto anyways.







Tuesday, May 22, 2012

Strangers? Friends?
May 22, 2009

(Airica burying Alyssa and a beach stranger/friend)


Today Airica was still climbing uphill, doing great, being silly, and getting better and better.  My dad had been taking care of Alyssa for the past few weeks and had to go back home on this day.  It was a hard day when my dad had to leave.

He had been doing so much for us all.  First of all he was taking care of Alyssa.  Trying to keep her life somewhat normal.  He would take her to school in the morning then head to the hospital to bring us food or whatever else we needed.  He was even doing our laundry and bringing us clean clothes.  He would chat with Airica, give her love then head back to our house to pick up Alyssa from school then bring her back to the hospital so she could see me, Christopher and visit with her sister.  Then they would head home make dinner and try to keep a normal evening routine.

I know this was a huge challenge for my dad, and a very hard, confusing life for the then 10 year old Alyssa.  I am forever grateful to my dad for dropping everything and doing this huge gesture to help out our family in such a difficult time, in such an amazing way. He had to go and we had to say our goodbyes.  He did get a hug and some awesome Airica time as we sent him on his way.  

When my dad left, a whole bunch of people came to us and wanted to help.  It was amazing.  We really only knew a handful of people, and not very well, because we hadn't even lived in California for a year.  That was the amazing part!  A neighbor that we didn't really know took over bringing us food, the neighbor that Airica went to church with took over helping with Alyssa.  Then people started arriving at the hospital that I had never seen in my life.  Bringing gifts, food, cards, and wanting to see Airica expressing their love and concern.

 Airica had touched lives so much, that these people loved and cared for her, and I didn't even know them.  They would tell me how they knew her, some were from school, but most were from church.  Then they would tell me some wonderful story of love, compassion, or act of kindness that Airica had done for them.  Airica could make friends with anyone and everyone she would meet.  It was a wonderful gift that she had.  I was overwhelmed and so proud of this wonderful person, my daughter, making these grown-up relationships and being loved by so many.  It was a moment when I found out that she was listening to all the things I was teaching her, she was growing into a wonderful young lady.

Airica had been in the hospital now for about a month.  I have met a whole other side of her.  When we came in I was holding her hand and comforting her and worrying about my fragile child.  Today that image I had of her has transformed.  I see this beautiful, brave, young lady who can handle anything because her strength is miraculous, and her heart is so full of kindness she has made all these strangers to me, friends that love her.



Thank you dad, and all the countless selfless others.


Monday, May 21, 2012

Crazy Airica
May 21, 2009



Today Airica is already doing better.  The adjustments that the doctors made were working like a charm.  She was waking up more and being a little bit crazy.  She was on some pretty serious medicines, so being a little loopy was not out of the ordinary, but Airica was crazy!

She was slinking down in her bed so much we were having to continually lift her back up.  I mean lift her up readjust her, untangle her feet that were wrapped around that bed bar like two monkey tails!  She was slinking down so that her face would be closer to her hands so she could tug at her breathing tube which she wanted off so badly. 

Airica's craziness is not anything new.  This child has given me so many crazy stories in her beautiful little life.  Like the time that she ran out of lunch money at school because everyone was so hungry for breakfast so she let them use her account.  Or the time that she found a family of rat babies that were abandoned by their mother and hid them out in the YMCA locker room so she could be their mother so they would survive.  Remember the YouTube craziness?  She had her teacher so wrapped around her little finger she went to school early just to play on her Macbook and be silly with her best friend Aleena.

Speaking of Aleena, here is the craziest story of all.  Airica started 7th grade at a new school, in a new state so she didn't know anyone at first.  She met Aleena in one of her classes and would hang out with her at lunch.  Airica swore to Aleena that she was a vampire.  Airica was a HUGE Twilight fan.  As she read the books she would come out of her room crying about whatever mess Bella was in.  Christopher had to go on book release days to get the newest books and fight crazed fans to get her the next book in the saga.  So, this is why she wanted to be a vampire and told Aleena she was one.  This went on for a few days. 

I'm sure that Aleena wanted to believe her, I mean, how cool would that be?  My new friend is a vampire.  Well, Aleena kept telling her that she didn't believe her and that if she was a vampire for real, that she would have to prove it!  Then, Airica bit Aleena.  Yes, really.  She bit her, not too hard, she didn't break her skin, barely left a mark, but yes, BIT HER!

She came home and nonchalantly tells me the story, then adds that she had to do it to prove it.  I was freaking out!  My 13 year old bit someone at school!  I told her she was NOT a vampire and that was such a bad choice.  She said that she is pretty sure that Aleena now believed that she was a vampire.  "Airica Moore!  You are NOT a vampire!"

I worked in childcare for so long that I knew the terrible, horrible reactions that parents had when their child got bit...when it WAS an age appropriate issue.  I seriously didn't know what to do.  I was freaking out.  Should I call her mother?  Should I wait and leave it alone?  Should I call the school?  OMG!?!  As I thought this I asked Airica if she had her phone number in case I decided to call her mom.  She told me that she did and then explained they were now best friends and they had talked about Aleena coming over then next day after school for dinner.  She added that Aleena's mom would drop her off and meet me when she came. Um...ok...I guess?  Wow!

Aleena's mom came to drop her off the next day.  She was so sweet as I apologized for my child biting hers.  She then proceeded to tell me that Aleena was about the same level of crazy.  They were a perfect match of crazy.  I was relieved but still made it VERY clear to Airica she cannot bite anyone else, they would just have to believe she was a vampire with faith alone!

So, this crazy child here in the hospital, is my perfectly crazy girl who thinks she a vampire (yes still).  Tracy, Aleena's mom and I got into some crazy ourselves together.  So, I guess they came by it honestly.  I love crazy!  I love Airica, and I will take her crazy any day over boring normal.



Sunday, May 20, 2012

Adapt, Adjust, Accommodate
May 19 and 20, 2009

(My accommodations) 

Do to others what you would like to be done to yourself. Love thy neighbor as thyself. Adapt, adjust, accommodate. Bear insult, bear injury. Unity in Diversity. We are parts of the same body. Practice humility in action. Beware of power, fame, name, praise, censure.
~Swami Sivananda~

The past couple of days in the hospital were a little crazy.  Yes, I was asleep in a chair.  Airica was still so sleepy, actually too sleepy.  Because of that I actually got some good sleep, in that chair.  The doctors were starting to worry about the fact that Airica was so sleepy and not responding very well.  Especially since she has been so active while on the full life support machines.  

They made some adjustments on her machines, did some med checks and even decided to weigh her to make sure she was getting proper doses.  As you can imagine they couldn't just have her step onto a scale.  They have this crazy contraption of a swing, lift type of scale.  They placed the blanket type thing underneath her (nurses can amazingly change sheets on a whole bed underneath a patient like magic!) strapped it up and lifted her up to weigh her. It was so strong yet so gentle it was like you would imagine the stork scooping up babies into their little packages.

They had determined a few things by the end of this day.  Airica has lost a significant amount of weight over the past few weeks, all of her doses needed to be adjusted to accommodate her new weight, she seemed to be having a reaction to one of the meds, and they needed to do a more comprehensive check of her brain activity.  All of those things were taken care of and an MRI was on the agenda for the morning.


(Our adaptation of snuggle time)

That night's sleep wasn't quite as restful.  I was so worried.  Again, she had been doing so well, and this was a little stressful.  I felt really bad about the breathing tube removal and how it failed.  Did that cause the current issues?  The not knowing and the wandering mind always causes so much harm from worries and stress.  Especially when it comes to our children.

The MRI was a pretty scary thing...for me.  Airica was sleeping so soundly the whole time.  The doctors and nurses made special arrangements for me to go with her into the test.  Not inside, but I was able to sit there and hold her hand during the 45 minute test.  She had to stay still, which no longer seemed to be a problem for her, now it was the problem for us.

(Hairstyle adjustments)

The MRI room was creepy, very quiet, cold, and the test seemed to take forever.  I held Airica's hand and followed what I had learned from the nurses and explained to her step by step what was going on.  I also added a bunch of I love yous, you're so strong, and we need you to wake ups, in there as well.  After what seemed to be an eternity the test was finished.  


They wheeled Airica and her whole bed back up to her suite in the PICU and there we waited to hear about the results.  After what felt like another eternity, they finally came in to talk to us.  Her brain function was completely healthy.  They told us to be patient and give the medicine adjustments a couple of days and she should start waking up more soon.


Adapting to many things in life is a challenge that I learned at a very young age. I can deal with a lot of things.  I think of myself as a pretty strong woman.  This fight for Airica has been my biggest and hardest by far, and I am giving my all, trying my best, but I know it is not in my hands, it is not my fight.




Friday, May 18, 2012

My Sleeping Beauty
May 18, 2009


Today, Airica sleeps.  She was not very active today like she had been.  Yesterday had taken a lot out of her and her body needed to recover and rest.  Since she was resting we decided to rest this day too.

As she laid there sleeping so peacefully I could't help but stare at her and watch her breathe.  Yes, she did have the breathing tube still, but I could now see her chest rise and fall as she slept.  I could also see her move her head or her hands as she woke up just enough to readjust herself.  I could see her feet tucked under the bar at the bottom of the bed.

I watched her like I had when she was an infant.  Actually, I never stopped watching my babies sleep at night.  I still do it to this day.  There is something that draws me to the sight of my babies sleeping so peacefully and resting quietly.  As you can see there are a few pictures of the probably too many that I have taken.

I felt a little crazy about it at first.  Sneaking into the room at night, creating enough light so I could see a little face, keeping so quiet as not to disturb the beautiful slumber.  But as crazy as I felt, there was just something that I loved about it so much.  It was like the sleeping breaths were inhaling air and exhaling love, and I had to be there to soak it in.  Somedays would be rough parenting days with serious discussions and even dishing out consequences.  That's definitely not my favorite part, but it's one of the parts.  Those days too, I would go in the room and sweet snoozes I would witness and still feel that love. 

That is what I did most of this day while I sat next to Airica's bed.  Watched her sleep, sent her love, felt her love, and stole the only thing worth stealing...a kiss from my sleeping child.   


Thursday, May 17, 2012

Things Come in Their Own Time...Not Ours
May 17, 2009


That statement is SO true, whether we like it or not.  Whether it was part of our plan or not.  Why does it always feel like the more we want something the further away it gets? I think it has something to do with focusing on the "wanting" and not the issue, situation, or current state of the present moment.

Airica had been doing so well.  She had been healing faster than anticipated, and machines were were coming off earlier than planned.  Why would we not expect this trend to continue.  Her lungs were working on their own when they lowered the settings and it seemed as if she would be ready to breathe completely on her own very soon.

We were so exited to hear this news and couldn't wait to take the breathing tube out!  Then she would be one more huge step towards her normal self.  I would be able to hear her voice again.  Which I longed for and wanted so badly.  She would be able to flash her beautiful smile at the nurses, and make jokes with the doctors.  Something that they had been missing as well.

After lots of discussion and faith in Airica's strength they decided today would be the day.  She wasn't quite as active today but we all thought she was ready, and wanted her to be ready so much.  We all stood around her room as the doctors prepared to remove the tube.  I was scared, that scary feeling I felt when they took off the canullas, praying that everything would go smoothly.

The tube was out.  It didn't seem as wonderful as our other triumphs, and I didn't like that feeling.  I expected Airica to have the tube removed, clear her throat, and say, "I love you Mommy!" that wasn't what was happening.  

I know that is a little much to "want" or expect, but look how great she had been doing.  As they were making sure that she was doing okay they realized that she was very drowsy.  She was still on some sedation meds and that may have been a contributing factor.  She wasn't responding to commands like open your eyes, or cough.  She had some sores on the inside of her mouth from the tube being in one place for so long.  Upon removing the tube they began to bleed and went into her empty tummy...and of course making her nauseous.

The doctors felt that these things could be dangerous, because her lungs were so fragile, and when she threw up, liquid would fall back into her lungs.  They had to intubate her the same day they removed it.  This was a very difficult day for all of us that were involved.

I was so heartbroken that today wasn't the day.  I was so scared because the procedure didn't go as planned.  I was also grateful that she was back on the breathing machine and settled down versus the craziness of the day.  

It wasn't time.  She was still doing well, still healing, still fighting.  She was doing all she could.  I needed to do what I could, be patient, love her, and remember that things come in their own time...not mine.


Wednesday, May 16, 2012


Definition of Beauty?
May 16, 2009

(A goofy picture of my beautiful family)

There are many different ideas, opinions, and concepts out there of what beauty is.  I think that the the definition of beauty can be endless, similar to the definition of love.  Like what it means to me, what it means to a couple in love, what it means to a child, etc.  To me beauty is not always something that you can see, it is more of a way you feel, or how someone or something makes you feel.  That's where it gets tricky.

Often we get a new shirt or a new pair of shoes and we exclaim that we love them!  They make us "feel" beautiful.  That's the feeling that's not real.  What happens when the shirt gets old and ripped or the shoes are scuffed and worn?  We don't feel like we did at first.  We no longer "feel" beautiful in our old things and we "feel" like we need new things to make us "feel" beautiful once again.

What about the way we feel when our children hold us in their tiny arms and close their eyes and tell us, "I love you Mommy!  You are so beautiful."?  That's the feeling!  You can close your eyes and "feel" the beauty.  That one lasts and that's the way that I feel about beauty.  It's very close to a loving feeling, and it makes you feel so beautiful inside and out.  Not by any physical definition whatsoever and it's so powerful you can even overlook any idea of beauty that you could "see".
My family is the most beautiful thing that I have ever known.  There is so much love, so much strength, and so much compassion.  Everyday I am grateful that was blessed with such amazing people to share my life and love with.  

Airica continued to gain strength and heal slowly as each day passed.  Her strength and courage...amazing.  Her beauty...overwhelming.




Tuesday, May 15, 2012

Love, Love, Love
May 15, 2009


Today was a good day.  Airica's tests and monitors were showing that she was doing better as each day passed.  We were all doing good too knowing that we were on an uphill spiral.  Alyssa was doing especially good after her wonderful visit with her sister.  The rest of us were still in awe of the love that they shared and that we were able to witness.

One's sister is part of one's essential self, an eternal presence of one's heart, soul, and memory.

Alyssa blogs today:

Most siblings don't get along a lot of the time, however me and my sister were the exact opposite. She was like my hero. She loved me like a mom, scolded me like a dad, and we shared secrets like best friends. To me, my sister was the coolest! She let me wear her make-up, talked to me about boys, and always let me sleep in her bed with her.  I love her.



Monday, May 14, 2012

Reunited and it Feels So Good!
May 14, 2009



Airica was doing SO good!  Like I had mentioned before we had a wonderful social worker, Patricia.  She helped us talk through the big decisions, our feelings and emotions.  She talked to us about letting Alyssa see her sister when she came to visit Mommy today.  I wasn't sure it was a good idea.  The last time Alyssa had seen her sister was that night that we had to peel them apart.  Although she was doing better, she didn't look better if the last time you had seen her she was normal.  

Patricia thought that it was a good idea for many reasons.  Airica was doing better and she could somewhat interact with Alyssa.  Also, even though we were all being so optimistic and positive, the truth was that we were living day to day.  Alyssa deserved to see her sister, and by trying to "protect" her by keeping her away maybe wasn't the right thing to do.  I agreed we should try.

The hospital made special arrangements for Alyssa's visit.  They had a counselor from Child Life meet with her before hand.  Child life is a wonderful program that helps prepare children for the things that are happening to them in the hospital in kid terms.  They also work very hard to help keep the kids happy.  They prepared an activity for Alyssa as they discussed with her what she should expect when she  went into the room to see her sister.  Alyssa made matching bracelets for them to wear, and she would put hers on and then put Airica's on her.

Alyssa was so nervous as she entered the room.  So was I.  As she walked in Airica was in and out of sleep.  Alyssa walked to the side of the bed to see her sister.  She kind of froze up.  I told her to hold her hand and talk to her.  As Alyssa said I love you sissy in a quiet broken voice, Airica woke up.  Airica was so happy to see her sister.  Alyssa started to cry as she saw her sister there in the hospital bed so differently that her last visit.  

Before we could comfort Alyssa and let her know it was ok, Airica did the most amazing thing.  Airica waved Alyssa to come closer to her her face.  She looked into Alyssa's eyes as to tell her it was ok.  Then she pulled Alyssa's head into her chest, rocked her gently, and rubbed her head so that Alyssa was no longer scared.  This simple gesture brought rest of us that were in the room, witnessing this love, to tears.

Alyssa then talked a little more to her sister, gave her the special bracelet she had made, then said her goodbyes as Airica drifted back off to sleep.  This gesture had taken all of Airica's energy for the day, comforted Alyssa, and touched the hearts of the rest of us.  Love never ceases to amaze, is stronger that we could ever imagine, and we were blessed to see it that day!

(right after their snuggle)

(saying bye bye and love yous until next time)