Mar 28, 2013

Kids Are Heroes

The night was amazing.  Kaley (13) was nominated as a “Kids are Heroes” award recipient.  The moment she found out about it, she asked if she could get a fancy dress.  (Of course.)  A few days later she got a Happy Meal (don’t judge me!).  What I think is sweet is that at 13, she still WANTS a happy meal with the toy.  In this one was a Barbie plastic pink tiara.  She exclaimed that she would be wearing that to the party! 

Uh … Mama has other plans.  While it’s incredibly sweet and so very “childlike”, I wasn’t about to let her wear a 50 cent  tiara to a party where she was supposed to feel like a princess!  So we bought her a real one.  (Ok, a fake one, but you know what I mean.) 

Why was she nominated?  For her selfless love and devotion for 3 years with Manny.  She missed both her 12th and 13th birthdays due to us being admitted to the hospital on those days!  We were in the hospital for all of Christmas one year.  She puts him to bed in her bed nightly (and cries when I tell her she needs a break).  But by her doing that? It’s a gift of about 2 hours per night where I have no kids to attend!  It’s the difference between being semi sane and downright loopy.  She also comes with me every time to the hospital when we’re admitted.  Why?  So if I have to pee or grab food at the cafeteria or (heaven forbid) shower, he doesn’t freak out that I’m leaving him.  (Remember?  He was abandoned at a hospital.  So to him, hospital means “Mom leaves you.” I’ve spent 2 years assuring him that WILL NOT HAPPEN.  And she is a key part of it. 


There’s a million more reasons … but she is my hero.  And I thought it was time others recognized her. 

We all wore our fancy party clothes.  Kaley wore her new sparking jewelry and tiara.  She walked up to where Manny was sitting and he said, “Are you a princess, Kaley?” And she said YES! He then said Zoe was one too.  (My heart melted)

So we went to the party.  Daddy, Zoe, Manny, Kaley and I (we were allowed only 3 guests but they let us in with Manny since he doesn’t eat nor need a seat).  It was outside on the patio of the Tampa Bay Times Forum (where the Lightning Hockey team plays).  And normally that would have been a wonderful thing!  But … uh, it was FREEZING.  And no one knew it was outside!  (That little detail was left out.)  So we froze our hineys off.  Kaley and Zoe even had bare legs!  Thankfully I had spare blankets in the van so I grabbed those. 

The night was full of inspiring stories as they told a blurb about each kid.  The announcer even made a comment about being hopeful if there were so many great kids in the world doing amaing things for others.  There were stories of kids saving people by calling 911.  Kids who stood up to bullies.  Kids who cared for special needs family members.  Kids who raised money and donated it to worthy causes.  A few brought tears to my eyes.  Wow! 

There was only one “hiccup” in the night.  The dinner was buffet style.  The announcer (trying to be cute and funny to kids) said that, “The ugly kids had to go first and the cute kids had to go last.”  He was trying to say not to rush to the front of the line.  What he didn’t know … Zoe burst into tears.  She said, “Do I really have to go to the front of the line?”  It was all I could do not to cry with her.  It took me most of the night to put her psyche back.  I assured her it was a joke.  I told her over and over that she is NOT ugly.  That it doesn’t matter how many people have said it, that doesn’t make it true. 

Today, I decided to write the announcer.  I was very kind in the way I said it.  But I told him what happened last night.  I even sent him a link to her book.  Maybe he’ll rethink an offhanded comment like that next time.

The night was uplifting and amazing.  It was topped off by the most amazing full moon on our drive home. 

I just publicly want to say two things:

1)      Zoe … you are beautiful.  Inside and out.  I’m one of the most blessed people on the planet because *I* am the one God chose to be your mama.  You make me proud every day.  I’m sorry that not everyone can see past their own insecurities to see your beauty.  I’m sorry that you have EVER felt less than perfect.  Please know how much I adore you. 

2)      Kaley … you are my hero every day.  If you could ever see just the depth of admiration I have for you, you’d be blown away.  I still remember the first day I ever heard about you.  We knew we wanted to adopt Jacob but we didn’t know you existed.  Then when they said, “Both or none.”  It was a shocking way to find out there was a 2 month old baby, but I’ve always called you my “Bonus baby”.  I’ve never had one moment of second thought about making you my daughter.  You make me proud every day.  I love you with my whole heart. 


Mar 26, 2013

Three Years

Three years! 

Three years ago today … we met little Man for the first time.  I walked into Arnold Palmer Hospital in Orlando Florida about 8am. 
By 10 am, we were in our car headed home. 

Manny was 9 months old.  He’d spent the last month in the hospital alone.   His birthmother had done what she felt best for him and placed him for adoption.  During that month, he had double pneumonia, countless tests, various viral infections, was taken off bottle feeds, and had major surgery.  We were taking him home the day they felt he was finally well enough to be released. 
First picture we saw of Manny

Up until that day, he’d only heard Spanish. His birthfamily only speaks Spanish.  They gave him all therapists, nurses and social workers who spoke Spanish. 

I remember picking him up in my arms … He was VERY difficult to hold.  I remember thinking it was like holding a 16 pound bag of jello.  It was difficult making sure I had his head, both arms and both legs all going in the same direction! 

Remember?  He could only move his eyes at the time.  His hands were stuck in fists.  His head had no hair on the back and left side from being stuck in the same position.  His legs were in the “frog” position.  He couldn’t talk. 

But his eyes.  Not only were they beautiful, they were intense.  I could see HIM in those eyes.  I could see how much intelligence was there.  And how he just needed to be “unlocked”. 

We stopped for a restroom/snack break about halfway home.  And that’s when I had Kaley take a picture of us.  He was our legal foster child at the time and not legally adopted so we couldn’t put pictures of him yet.  But I knew people would want to know about Manny. 

So I posted THIS picture of him as my way of announcing to the world that we had a new son. 

I’ll never forget the first night.  He slept in the crib right next to me.  I remember feeling so helpless with him.  If he needed to scratch his nose, he couldn’t.  If he was in pain, he couldn’t tell me.  If he needed anything, how would I know?  At one point in the night, he let out the tiniest whimper.  It was softer than a newborn kitten’s meow. 

I cried.  I also prayed.  I asked God to help him speak really well so he could articulate his needs.  And man did He answer that prayer! 

All day I’ve been reflecting back to that day.  I certainly can’t tell you that everything has been sunshine and roses.  Truth is … it’s been the hardest 3 years of my life.  I’ve failed so many times in the past 3 years.  I shudder to think.  I’ve let my other kids down in innumerable ways.  We have financial strain.  Relationship strain.  Many things have taken the back burner … important things.  I’ve faced horrible struggles … some have been included in this blog, many have not been. 

And yet … I also can’t begin to innumerate the blessings we’ve received these past 3 years.  The gift that Manny has been in our lives.  My children understand patience and priorities.  They understand personal sacrifice for the greater good.  They have learned some independence (like being without Mommy for a month at a time sometimes). 

Sometimes I wonder if what we have done was “fair” to them?  Would they chose this life if they had the choice?  But I know the answer … almost every night at prayer time, they thank God for Manny.  For him being a part of our family.  They get it. 

I’m thankful for the past 3 years.  After we had him for 6 weeks, he landed in the hospital and told he wouldn’t live another month.  So in truth … we’ve had almost 3 years of “Bonus Manny Time”.  A fact that never leaves my head. 

And me?  I’ve grown too.  In ways that are hard to articulate.  He no longer feels like I’m holding Jello.  I learned more medical terminology and procedures in the past 3 years that many medical professionals learn in that same time frame.  I’ve gained a huge support system. 

I’ve grown patience in ways that are unbelievable to even me.  (Like yesterday when we went to the hospital.  We were told to be there at 10:15 for a 12:15 surgery but once we arrived we were told it was actually a 3:30 surgery.) 

But I’ve also lost patience with certain things.  Like bull57i+ for example!  And people who don’t get it.  Like recently, a person came to my house to deliver something.  They have had a rough time by most people ‘s standards (a job and relationship loss).  But they have family who loves them, they have huge support, they have healthy children, etc etc.  And this person was whining about their life.  It took all the restraint in the world to not rip that person’s head off.  Why?  Just about an hour earlier, I had gotten the call that a friend’s child had just died.  I had several others who were in ICU fighting for their lives.  I had just returned with another close call with Manny.  I wanted to shake this person.  I wanted to tell him/her how wonderful his/her life was.  I wanted to show him/her some perspective!  You should be proud that instead I just said, “Thanks”.  I prayed a blessing over them.  I sent them away. 

I wonder what I’ll be writing in 3 years from now.  I’ll have a perspective that I can’t possibly have now. 

Manny.  He’s a gift to many.  I know he’s inspired many people.  There’s just something about him that transcends race and gender and age.  People fall in love with him the moment they see him. 

He’s a blessing.  I’m more than happy to “share” him.  I’m just in awe still that God chose ME to be his Mama. 

To my sweet, precious Manny.  I love you more than I could ever imagine one person loving another human being.  I’ve spent the past 3 years fighting for you, praying for you, worrying over you, caring for you, scared for you, in wonder of you, delighted by you.  You are a treasure whose worth immeasurable.  I love the way you laugh so hard that you lose your breath.  I love how when you do something “naughty” that you immediately say, “Sorry Mama”.  I adore how you have such empathy.  Like just tonight you heard the commotion in the other room and said, “Is Luke Sad?” And you were right.  You said you wanted to tell him you were sorry he was sad.  I’m blown away by the way you can walk into a room full of strangers and immediately compel that crowd to action.  I’m in awe of how much you love life.  And I’m so happy to be your Mama.  Thanks for coming in to our lives. 

Mar 16, 2013

Spring Break

We got out of the hospital.  It was a quick thing.  Our usual protocol with a fever is that we get blood cultures once we’re admitted and then we can go home when we have two negative cultures.  They come in every 24 hours.  So basically 48 hours later (if fever free) we can go home.  But our “usual” doctor wasn’t there and the other one let us go.  BEFORE we even got one negative culture. 

Why is this a big deal?  Because remember back to December 2011 and Manny barely survived?  It was a line infection.  Only symptom was a fever.  If his broviac gets an infection, it goes straight to the bloodstream (called sepsis) and it’s very dangerous. 

If I was scared of him actually having a line infection, I would have insisted we stay until we met protocol.  But I knew he likely had something viral.  Why? Because I had a sick kid at home with similar symptoms.  And while we were at the hospital, 2 more kids got sick.  So this wasn’t a line infection, this was contagious.  (Yes, that’s good news for us!) 

So we got home.  Now this was the start of Spring Break.  And I had 4 sick kids.  Not exactly the start I was hoping for.  But at least we were out of the hospital!

Over our week of spring break, we went bowling.  Yes, even Manny.  It was his second time of bowling.  The first time  was last year and I sat him on the ground and helped him roll the ball.  He did that a few frames.  But this time, we left him in his wheelchair and got him the ramp.  We helped get the ball up there and he would roll it.  He loved it and played every frame!  He even picked up a couple of spares.  :)

We went to Busch Gardens.  He especially loves the train and the baby train.  For the train, he rides on the back in his wheelchair.  We ride it basically every time we go.  He has a fancy kidkart which is a wheelchair but still looks a bit like a stroller.  Dan and the other kids were riding rides and Manny and I went to get on the train.  I walk up to the Handicap access area and stand.  The conductor tells me that I have to disassemble my stroller.  I tell him it’s a wheelchair.  He starts to argue with me.  I stay calm.  I tell him that I ride on the train all the time.  He says, “How do you ride on the train?”  Me: “In the handicapped section.”  Him: “You can’t put a stroller in the handicap section.”  Me: “I understand.  This is a wheelchair.  It’s a cool looking one, but it’s a wheelchair.”  It was ridiculous.  Eventually he lets me in, unconvinced that it’s a wheelchair. 

When we got in the back section, I was amused that the two people in the section were people who could walk, they just rented the wheelchairs for the day from Busch Gardens due to fatiguing easily.  And they were let in with no questions asked!  But Manny?  A permanently disabled child who can’t use his legs or arms, a child who eats only via IV can’t get in the handicapped section?  LOL

Now I realize that the reason this happens is due to people who take advantage of the system.  I’m sure people try to sneak strollers on all the time.  They try to bend the rules.  Try to get away with stuff.  But how about the people with legitimate needs?  Seriously?  Ugh ugh Ugh. 

We did our nice train ride and then met up with the family.  We then went to the section where there is the baby train.  On this he has to get out and ride without a chair.  He can sit fine in the train but JUST IN CASE he were to lose head control (he does that sometimes), we have one of our kids ride with him.  Zoe is now the only one short enough to ride with him.  He was hooked up to his TPN at the time.  Dan walked him to the train and put him in.  The ride operator, Chris, came over and was so kind and understanding.  He told me that he was going to have to check the seatbelt and is there anything he needed to know before he did that?  He was treating my kid like a human being!  He recognized there was a disability and was trying to find what accommodations he would need. 

I cried!  I actually went over and told him about how amazing it was what he did.  I told him that just a few minutes earlier we had just had the opposite experience and that I just needed him to know how much it meant to me.  I’ve written a letter to Busch Gardens about him. 

During Spring Break, we also went to a few places that are selling Shamrocks for the MDA.  Popeyes chicken and Lowes specifically.  We took pictures and told the staff how we appreciated what they are doing for families in the Tampa Bay area.  This is the thing we saw when we went into our local Lowe's.  Yes, that sign was for our Manny.  hadMDA had sent out some flyers to the Lowe's in the Tampa area as motivation as to why they are doing what they are doing.  One of those was about Manny.  The night before we arrived they had made this sign.  They didn't know we lived locally nor that we would be popping in.  And coordinator?  She hugged me and said that she has been praying for our family daily.  ... how incredibly humbling!  No words. 

We went to a fun park.  Manny’s favorite part there was this pretend kitchen.  He kept making me food.  I think I had 100 servings of pretend ice cream. 

And we went to a fundraiser for the MDA.  Every year, the firefighters of Pinellas Park put on a HUGE event called “Chili Blaze”.  It’s a bike show, chili cookoff, concert, etc.  About 10,000 people show up they say.  Fireworks at the end.  What a fun night! 

Manny tuckered out. 

Mar 9, 2013

Hospital Essentials

Feb 28 we got discharged …

March 1 Trying to rejoin my life.  Not always as easy as that sounds. 

March 2 Dan, Jacob, Sam and Luke leave for the weekend.  (Father and son thing.) It’s also my birthday.  So the baby, girls and I stayed home.  It was freezing (for Florida) so we mostly just hung out.  We got rental movies and stayed in our pjs. 

March 4  Meeting with our new GI.  It’s an hour drive one way but I have to say, I’m thrilled so far!  Labs were drawn.

March 5 The labs were back and the GI called to see why they weren’t in yet.  No way! A doctor who is actually going to LOOK at the labs! :)  She made subtle changes to basically every part of the TPN.  Slightly increasing his nutrition.  That night, he was choking on his own post nasal drip again.  It was affecting airway and he had to have oxygen. 

March 6 We went to the ENT.  Sure enough, his adenoids are ragged and “generous” meaning he will have to have them removed sooner than later.  Her first available surgery date is March 25.  I doubted that will be soon enough to prevent another hospital stay.  Especially since he was choking on his secretions on the way in to see the doctor. 

March  7 Today is the day we’ve had his central line for 13 months, still infection free!  (Amazing!)  He was fine all day.  But he was having a rough time sleeping.  Again, choking every few minutes and desatting.  He was going down to low 80s and even 3 liters of oxygen barely got him back to normal levels.  It was a long night.  Then at 4am, when I was repositioning him, he was burning up hot!  102.9  That’s an automatic admit to the hospital!

March 8  His temp was still high so we had to get everything ready and come in.  IV antibiotic was started immediately and he started showing signs of improvement with 2 dosages.  Plus, his horrible diaper rash is back and it’s clearing with the antibiotic too.  (Means it’s likely staph.)  We tried oral antibiotics (went in his jtube) but he didn’t absorb them at all so it basically did nothing for him.  IV antibiotics are the only things that help.  I’m just thrilled this hasn’t entered into his bloodstream!  For as long as it has been hanging around, I’m quite frankly surprised.

March 9  His temp is gone, cough is getting better.  He didn’t desat at all last night.  So now I sit here in his hospital room on his “usual” floor.  We have our system downpat. 

So I thought I’d share a few things I do to survive the hospital.  Every week I get a disposable cooler with his TPN.  I take one of these to the hospital full of foods.  Mostly fruits and vegetables.  (think Salad bar.  To get a small bowl at the cafeteria, it’s several dollars and it’s also a 5 plus minute hike over there.  This way I don’t have to leave the room.) 

I have a device that heats hot water.  It has an automatic shut off so it’s even safe.  From this, I can make hot tea, sweet tea and soups.  I’ve even boiled noodles before! 

I bring a few items like potatoes (they have a microwave).  And then things that I crave.  For some reason, when I’m tired and stressed, I crave CRAVE olives.  Black ones, green ones, etc.  I crave pickles and chips.  So I throw a few of those in my bag. 

For comfort, I bring very loose fitting comfy clothes.  They’re carefully selected for several key elements … fit, no wrinkles, dark for no stains, and goes with black pants or jeans, can’t be too low, too hot or too cool.  Etc.  These things matter when you sleep in your clothes round the clock.  I don’t want to have to think about these things.  So I have a hospital suitcase packed with just such clothes all the time. 

I also have warm, fuzzy socks.  In my real life I only wear sandals so this is important.  And I have a black oversized sweater.  This is important because the rooms will be freezing then burning up.  The sweater is easy to put on and take off. 

I bring my own twin sized comforter.  Why? Their blankets here are scratchy and thin and too short.  You can either have your shoulders covered or feet but not both simultaneously. 

Plus the essentials like soap that doesn’t smell like the hospital is NECESSARY! :)

Then there’s all the things for Manny.  I bring DVDs, toys, ipad, slippers, his dreamlights dog, etc. 

So as you can tell, we are able to set up quite nicely in our room.  As often as we’ve done this, we have become quite the experts of surviving in this tiny room.