Story Time!

Yesterday we went to story time at the library.  It was so great to take Aaron and do with him what I did with the olders.  It's a Mom & Me story time, geared towards 18 to 36 months, so we're even in the target range!

Ready for Story Time!

We had to modify a couple activities for him.  Instead of getting up and running around the room for red light, green light, I just ran his legs as he sat in my lap.  He thought it was really funny.

Mommy & me playing at the library.

We used little sticks to tap together, rub, and swish back and forth. It was really hard for him to keep a hold of the sticks, but before we were done, he was purposefully hitting them together.  He would bring the one in his left hand UP to tap the underside of the one in his right hand, which he really wasn't moving at all.  So funny.

It's not often that I give into impulse buys.  But it's also not often that I find the perfect shirt for him.  I mean, I still struggle a little bit (okay, sometimes a lot) when I see these cute "rookie of the year" or "play ball!" t-shirts for toddlers.  I don't mind seeing them on others.  I just have a hard time putting them on him.  But yesterday, I found the very best shirt.  It says, "Daddy's #1 Tough Little Dude."  And doesn't that say it all?

“Most of the things worth doing in the world had been 

declared impossible before they were done.”

― Louis Dembitz Brandeis

Do You Want to be Happy?

When I was a kid, there was this song my mom would sing with us.  It's been running through my head for the past five days.  But it's cute and catchy, and has a great message.  It's down at the bottom if you'd like to see it. and you can click on the title to hear it.  But the gist of it is, if you want to be happy, find something you can do to help someone else.  It doesn't have to be a big deal, even the little things matter.  Here's a way to be happy that will really help someone, and won't cost you more than a minute out of your own life.  

So, do you want to be happy?  Do you?  Really??

 

Let me introduce you to someone who is happy.  Brigid is a young friend of mine.  I "met" her and her mom about 18 months ago through a mutual friend.  Her mom, Allison, has a blog called "Confessions of an Unintended Sherpa" and blogs about the world of the medically fragile.  She knows a lot about it, because, yes, Brigid is fragile.  Brigid is a beautiful little girl with a mitochondrial disorder.

What's mito- whatever??  Your mitochondria are tiny compartments in your cells.  They generate more than 90% of the energy your body needs to sustain and support your life.  But Brigid's mitochondria aren't happy.  And they cause significant challenges for her.  But her diagnosis is not all there is to her.

She is a beautiful, almost seven-year-old little girl with a lot of spunk and courage.  In her nearly seven years, she has endured more than most adults, but she keeps trying.  She has suffered strokes, and learned to walk again.  She has survived DIC, a disease very few people make it through but has learned to dress herself.  She has spent the first day of school for the past three years, NOT in school, but back in the hospital.  She recently got her first bike and has been so excited to learn to ride (thanks Dad!), a HUGE accomplishment.  She "helps" Mom in the kitchen and loves being with her older brother, Reggie.

Brigid has the brightest eyes and the cutest, curly red hair.  I love to see her smile.  Right now, she's in the hospital, where she's been since just before school started, again.  And she's not going to be headed home anytime soon.  See, this time around, she's got a fungal infection in her blood.  I don't understand a lot about it, but I know the blood travels throughout the body, which means the fungus can, too.  And apparently, this is a really nasty strain that only responds to one kind of medicine.  No problem, right?  Well, except for the small issue that her heart and blood pressure really DON'T like that medicine, at all!  And not only is Brigid in the hospital, she is a hospital over two and a half hours from home, and she'll be there for at least another six weeks, until treatment is done.  

Regardless of what her cells are doing, she's a six year old little girl.  Treatment is going as well as can be expected, except she's stuck, in the hospital, with Mom but without Dad and Reggie.  And guess, what?  Boredom is setting in.  I mean, really, would you want to be there, for six long weeks?  

So, here's what you can do.  It's really so simple.  Brigid LOVES to get mail.  It's a real highlight for her.  And her hospital has a free e-card program.  You can follow this link and pick a cute picture.  Write her a little note to cheer her up.  Don't worry about finding the perfect words.  It's okay.  Just let her (and her mom!) know they're being thought of.  You'll need her name, room number, and hospital, so here it is:  Brigid Kidd, room B6-118, and Children's Hospital.     Or, if you'd really like to do something neat, send her something directly.  The hospital address is:

Children's Hospital of Western Ontario

Rm. B6-118

800 Commissioners Rd East

London ON N6A5W9

See, isn't that easy?  You can make her day with just ten seconds of effort on your part.  And that'll make you happy, too.  So spread some sunshine.  Can we make this go around the world?  Please share this post with your family, friends, anyone.  And don't plan to do it "next time" you're on the computer. This doesn't cost you anything, and you have the chance to be part of something great.  So send a smile, a hug, and some love.

Brigid looking at rainbow out her hospital window last week.

Do You Want to be Happy?

Do you want to be happy?

Do you want to be joyful?

Do you want to feel gladness in your heart?

There's a way to feel happy.

There's a way to feel joyful.

There's a way to feel glad if you will start and...

Do something nice for somebody else.

That's what Jesus did.

Don't be afraid, it won't hurt you to try it.

Do something nice for somebody else.

That's the way to live happy, joyful, gladly.

It doesn't have to be something grand.

Something small will do.

Surely you know someone who has a need, so

Do something nice for somebody.

Jesus taught us to love everyone, 

All the while to serve everyone,

Make them smile.

Will you

Do something nice for somebody else,

Do something nice for somebody else,

Do something nice for somebody else?

Rivalry Week, At Home!!

Last night was the big rivalry game here in Utah.  BYU vs University of Utah.  Blue vs Red.  Private religion vs Public state school.  And the school where my husband and I (and now some kids) put in a lot of blood, sweat and tears (and money!) to gain an education, against the school that teaches and trains the doctors and staff who take care of Aaron.  Yeah, I'm starting to be (just a tiny bit) conflicted, but not much.

BUT, here's the good news.  We weren't there!  Not "there" as in, not up in the middle of all that RED that I KNOW permeated the hospital.  Again, I don't have (much) against the red, but it was nice not to be there, for the first time in Aaron's life, on this weekend.  And both other times we weren't supposed to be there, either.


Saturday, November 27, 2010.  We had just been discharged on Monday after almost three weeks where he'd been up there to get his g-tube, then followed by the need for the trach and ventilator.  It was supposed to be pretty good for quite a while.  But, unknown to all, his vent settings weren't enough to sustain him as he became more and more tired.  Early in the morning on Friday, paramedics decided he needed more care and faster care than they could provide.  Lifeflight was called to our home, landed next door in the intersection, and he was on his way.  Needless to say, on game day, there wasn't even the smallest chance that we were going to be anywhere but in the ICU.


Saturday, September 17th, 2011.  Aaron had gone in the day before for a same-day surgery on his feet to correct his vertical talus.  That's a bone in the foot that's supposed to lie horizontal, but because his achilles tendons were so tight, the bone in each foot had been pulled vertical.  Same day as in "in, out, let's go home."  But I was a little uneasy because his heart rate stayed high after surgery, so they kept us overnight.  I planned an alternate route home so I wouldn't have to fight game day traffic if we didn't get out in the morning.  Turned out that wasn't an issue at all.  He continued to struggle, his tiny toes became not so tiny, and we were there until Tuesday.

Saturday, September 15th, 2012.  We weren't exactly at home, but we certainly weren't at the hospital.  And while yesterday was full of "growing experiences," they weren't necessarily Aaron's.  Yeah, out of our four soccer teams, three got crushed.  Rough day.  But Aaron thought it was all in fun.  He slept through the first game and then played and cheered at the second.  (I only made it to two of them.)  He also did two one-hour trials off the vent and performed beautifully.

Unfortunately, even though he was all decked out and cheering for the good guys, they failed to pull it off, again.  Red has prevailed over blue every time in Aaron's life.  I didn't stay up to watch, but it appears to have been (almost) a comedy of errors, with BYU unable to finish several scoring opportunities.  Oh, well.  Maybe better luck next time.  And the real goal is to be watching at home again next year.

“Home is the nicest word there is.”

Laura Ingalls Wilder

How to Eat an Elephant

How do you eat an elephant?  One bite at a time.  Aaron thinks the ear is a good place to start.

He's going to be 27 months old on Thursday (yea!) and getting bigger and stronger all the time.  He's just recently decided that baths might be okay.  He would get so upset before that, often, I would give him a sponge bath in his bed.  But the last few times, he's almost had fun in the sink.  But speaking of bigger, the sink's not growing with him.  So I'm looking at different bath chairs.  Do you have any idea how much money the word "medical" adds to the price of something?  It's crazy.  Especially for PVC pipe and mesh.  So I'm thinking we'll be making our own.  I'm sure it will fulfill a merit badge requirement of some sort or other...

The bath chair we're going to try to model
ours after.  We'll see how it goes...

And with getting older, the next elephant I'm looking at is public school.  Yeah, I realize that 36 months  old is still nine months away.  But this mama is so clueless about the world of special education that I'm feeling just a bit (okay, a whole lot) overwhelmed.  There is so much to factor in.  It's not just his physical and social development, although those are important.  It's also protecting him medically, making sure that everything is in place and there's a well-trained nurse, who also knows Aaron well.

I could easily make the case for home/hospital learning, where he would be here with me and have therapists/teacher visit us.  But this is not about what is best for me.  It's about what's best for him.  And this little man LOVES to get out and be with people.  When we're out and about, he gets SO excited when I unbuckle him from his car seat.  "YEA!  Let's go!! What's new out there??"

It may be that he does need to be home schooled, but we'll follow his lead on that one.  For this decision, the coming months will be a big factor.  If he can go out and still stay well, everything will be great.  A winter like last, where he was only sick twice but it was a really big deal (read "dicey PICU stays with uncertain outcomes possible") we'll have to reconsider.  And it goes without saying that if he struggles any more than that, it won't be happening.

But in the meantime, I'm trying to learn all I can about this new process.  I'm talking to people in the system (Thanks, Sis!) and attending informational meetings.  I've got a call into someone at district headquarters who can give me a feel for how our specific district addresses some of these issues.

I almost feel like I did back two and a half years ago when we first started this journey, but without the depression and heartache that was so prevalent.   I'm not being told that he won't live, but it's still a different landscape, a different world than I've dealt with before.  They speak a completely different language in this world than the one my other kids inhabit.  So here it goes.  I'll try to follow Aaron's lead, and just take one bite at a time.  Hopefully in the next nine months I'll have figured out how to make the most of the new dish on my plate.

Learning is like rowing upstream:  not to advance is to drop back.  ~Chinese Proverb  

Testimony

A birthday bear from Payton to Aaron.  Payton is a little
girl who had Trisomy 13 and lived 17 1/2 months.
This is a gift from her family to Aaron.

Such a soft and cuddly friend.

I'm not sure where this is going, not even sure if I'll post it or just keep it as a draft.  But I've had these thoughts running around my mind today, and I'm hoping to settle them and make them coherent.




Today was Fast and Testimony Sunday at church.  We fast two meals, giving the funds saved to the bishop to help others, and try to draw closer to Heavenly Father through sacrifice.  Sometimes going without that food is harder than others, like when I've not fasted for almost two years due to pregnancy and nursing.  But that was neither here nor there this time.  It's been almost two years since that was a factor.  But today, it was more out of rote or habit than an actual purpose in fasting.  Except, I wanted to feel something, learn something.  So maybe that was enough.  I think it was.  Anyway, all was about the same, some kids tired, others cranky.  Aaron had a good morning and was trying to decide if he should sleep or stay awake for church.

The scriptures teach us that fasting brings for blessings.  When his disciples tried to cast an evil spirit out of a boy and couldn't, and then the Savior did, they asked why.  His reply:  Howbeit this kind goeth not out but by prayer and fasting. (Matthew 17:21)  I know the power of fasting and prayer.  How could I forget it?  I've felt it's influence many times in my life, both in tangible and intangible ways.

And it makes sense that when bearing testimony on Fast Sunday, fasting would be mentioned.  Anyway, I was just sitting there, enjoying the meeting, when one comment hit me, hard.  A wonderful woman was talking about the blessings she's seen and mentioned that it was through the power of the fast that her daughter wasn't in a wheelchair.  Wait a minute, my soul cried, my son IS in a wheelchair.  And the Spirit gently whispered, "Yes, he is.  He is in a wheelchair, right here, beside you, happy and smiling."  And I began to be taught.

Each of our trials are custom-made for us.  Mine are different than someone else's.  For a moment, I felt just a tiny bit of the anguish I've heard from angel moms.  Just because our miracle is still alive and we give God the glory, does that mean that their angel was any less of a miracle, or that God loved them less?  No, most certainly not.  I think, at least for me, the miracle is feeling of God's love.  I don't know why some have to die and others get to live.  I don't know why Aaron struggles so much and has chosen (because I believe he chose this life) to fight so hard.  I just know that when I'm with him, when he smiles at me, I see God's love shining through those eyes.  If being a Christian means taking on ourselves the attributes of Christ, then Aaron is the best Christian I have ever been blessed to know.  Because he loves, unconditionally, just like my Savior.  He forgives, and he works hard, and he suffers, innocently, just like Christ did.

There were others who spoke, and it seemed that a few spoke about trials and how the knowledge that God was there for them in their struggles helped them.  Then right at the end, the very last speaker, bore a powerful testimony of the Savior, and of His resurrection.  He spoke of attending a colleagues funeral yesterday, and the struggle that was.  Then he concluded with the wonderful word of Jesus, Himself:  "I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he live:"  (John 11:25)  I couldn't hold back the tears, but they were tears of thanksgiving and gratitude.

I know my Savior loves me.  I know He loves Aaron.  This life is not all there is, and we will be together again when it is over.  I will hold him and love him.  He will have a perfect body, one that breathes and eats and laughs and runs.  One that won't need machines and medicine to help him.  One that will let him speak the words of his heart and hear my voice.

One of my very favorite hymns is I Know That My Redeemer Lives:

1. I know that my Redeemer lives.
What comfort this sweet sentence gives!
He lives, he lives, who once was dead.
He lives, my ever-living Head.
He lives to bless me with his love.
He lives to plead for me above.
He lives my hungry soul to feed.
He lives to bless in time of need.

2. He lives to grant me rich supply.
He lives to guide me with his eye.
He lives to comfort me when faint.
He lives to hear my soul’s complaint.
He lives to silence all my fears.
He lives to wipe away my tears.
He lives to calm my troubled heart.
He lives all blessings to impart.

3. He lives, my kind, wise heav’nly Friend.
He lives and loves me to the end.
He lives, and while he lives, I’ll sing.
He lives, my Prophet, Priest, and King.
He lives and grants me daily breath.
He lives, and I shall conquer death.
He lives my mansion to prepare.
He lives to bring me safely there.

4. He lives! All glory to his name!
He lives, my Savior, still the same.
Oh, sweet the joy this sentence gives:
“I know that my Redeemer lives!”
He lives! All glory to his name!
He lives, my Savior, still the same.
Oh, sweet the joy this sentence gives:
“I know that my Redeemer lives!”

“My beloved brothers and sisters, in our hour of deepest sorrow, we can receive profound peace from the words of the angel that first  Easter morning: 

‘He is not here: for he is risen.’”

                                     President Thomas S. Monson 

So Much to Think About

Sweet Dreams, Little Man

Aaron is doing well, so very well, right now.  We're moving forward and planning for the future.  But with that future comes change, and new things to look for.

Next year, Aaron will age out of his Early Intervention program.  That's the program where his therapists come to our home, once or twice a month each, and teach me how to help him.  They've got a variety of toys and tools that have been loaned to us, for as long as he needs them and is in the program.  For many of the toys and things, it wouldn't be too hard to find something similar, because that's what they are:  toys.  But some of the items are specialty ones, and you won't find them lying around the homes of typical kids, or the garage sales, either.

He uses an adaptive button in his crib to turn his music on and off.  Now that he's got cause and effect down (and really, he has had for quite a very long time), he has two other toys being modified to use the same button, one of which will call out "hello!"  We're hoping that he can start using it to call people when he wants to get their attention.  But no, that button is not something you can just pick up at Wal-mart.  It will need to be ordered from a disability website before he turns three and we have to return the other one.

Then there's the school aspect.  Yeah, he's going to school!  How cool is that?  I remember when I first spoke to my sister who has been part of Jordan School District's special ed staff for many, many years.  When I told her that my baby had Trisomy 18, she was very quiet.  And then she said, "I've never seen a child with Trisomy 18.  They don't live long enough to get to where they come to us."  But Aaron is only one year away from that.  But that also means, gulp, he won't be with me all the time.  And chances are pretty dang good that there may be the need to access his troubleshooting and medical info when I'm not standing right there.  So my handy-dandy flash drive that I keep in my wallet, won't be there either.  I do keep hard copies of his information, and they'll be with him, but I've been trying to come up with a way to put his information ON him.

Besides, as someone brought up, heaven forbid we were in an accident or something, and I couldn't tell EMS where to find the hard copy (in his bag, on his clipboard)?  I was at an Emergency Preparedness seminar for Special Needs Kids this past week.  One mom has a medic alert bracelet with a USB drive that her daughter wears.  I thought that was so cool!  Then he'd always have all the info that I also have.    So that's now on my "wish list" too.

On the subject of wishes, we're also heading up to Salt Lake in a couple weeks to have him evaluated for a special needs bed.  I've found the one I want, the one that will be the very best for him, but it's going to be an uphill battle to see if we can get it.  It's got mostly plexiglass sides, so he will be able to see out, but won't feel like he's in a cage.  It also raises and lowers so that it will be easier to care for him, transfer from his bed to wheelchair (important as he gets bigger!), and he can also learn to crawl in and out, with supervision, of course.

Most important, it is fully articulating.  The head and knees can be raised and lowered.  He needs this so badly.  When he sleeps flat, the water collects in the outer cannula and when he moves, it dumps into his lungs.  NOT a good scene.  Like, low 70's oxygen sat rates.  But with the head raised, he's losing developmental progress because he's not trying to roll over anymore.  He'll go to his side, but doesn't try to go all the way over.  So, like I said, it will be a challenge to get the bed covered, but I'm really hoping we find a way.

He's sprinting off the vent a little bit more.  Friday, he made it 30 minutes with very little stress during one of his trials.  But last night, last night he was just worn out.  He had been out in the garage (which is now clean, yea!!) with us all morning, then played most of the afternoon.  He got a bath in the sink and was more than ready to call it a night.  I tried to take him off the vent, but after only ten minutes, he was just too tired to keep working.  He doesn't usually need much, if any, more oxygen, but his was really struggling to keep his sats up.  When his heart rate started increasing, and he started tossing and turning, I decided to let him call it.  I put him back on the ventilator and he was sound asleep within minutes.

Hmm, yummy!

I'm thinking we may start trying to introduce the bottle again.  When he gets little tastes of things, they end up down in his stomach and not in the trach.  (How we know is a little graphic, so I'll spare you the details.)  But I'm thinking that one of the main reasons he wasn't able to protect his airway before is that it was just so hard to breathe.  When a person is drowning, the reason that it's silent is because if they do get their mouth above water, they're too busy trying to get the air in to take time to scream out.  Same with eating.  And when he was trying really hard to breathe, sometimes that airway was open when he was also trying to swallow.

Oh, hi there.

I'm trying to figure out what to try in the bottle first.  It needs to be something that tastes good, so his formula is probably out.  I know it doesn't smell good, and there's no need for added sugars because it does bypass the taste buds.  Plus, I have to find his bottle nipples.  I know I still have some, just not sure where.  After all, it has been over two years since we tried a bottle.  So we started this week with a bit of candy cane.  What do you think?  Think he liked it?  I do.

Hi Mom!  I'll look at you and smile, but
NO WAY I'm letting go of this candy cane!

   


So here's to dreams and wishes and looking toward the future...

The future belongs to those who believe in the 

beauty of their dreams.

Eleanor Roosevelt

Back to School and a SOFT Picnic!

This past week was Back to School in a big way around here.  Everyone except my bookends (Deborah & Aaron) are in school full time as of this next Monday morning.  Deborah's working full-time graveyard shifts as a CNA and Aaron, well, he just keeps on with his own things.   He's doing sprints off the ventilator twice a day now, for 15 minutes at a time.  I try to space them out by about 12 hours, but the second one is always a little harder than the first.  He breathes a little faster and needs a little more oxygen to maintain himself.  But he keeps on smiling and is a champ about the whole thing.  He's definitely my little champion.

Last Tuesday was the first day of school for the five in public school.

Matthew was the first to leave for 9th grade, followed by Jonathan in 11th grade.

Michael (1st) and Andrew (4th) tore out of here for the bus as soon as I said they could go.  It was a full 20 minutes before the bus was supposed to show up and it's about a three minute walk (run?) to the bus stop.

Joseph was the last to leave for 7th grade.

Wednesday found us moving David into his apartment down at BYU so he could be there for freshman orientation.  Our third to experience this, he had SOOO much less than either of his sisters.  Our first time, we took out the back two benches in our extended van and it was PACKED.  When the second one took off, it was just the back bench pulled out and was nicely full.  David?  No benches out, and it didn't even reach the seat backs.   My girls tell me that's the difference between boys and girls.  Oh, well, love them all.  Anyway, Mary came along to help move him in, which was great because he's on the third floor.  And no, there is no elevator.

Thursday was a day off, at least from moving.  It was also the day that all four of our soccer teams were practicing.  A little crazy to have them all the same night, because they're NOT at the same location, or the same time.  But also nice to only remember one night of practice, at least last week.  Everyone knew they were on Thursday, so when one started getting ready, the other's were reminded, too.  (And so was Mom, for that matter.)

Friday, Mary and I headed down to BYU.  THAT was crazy.  She's in a great apartment complex with what looks like some really fun roommates.








But parking?  Not so much.  EVERYONE was trying to move in.  TONS of monster vehicles like my beast, Suburbans and so on.  And almost no parking.  We were lucky to find a spot about half a block away from her apartment.  But she's on the ground floor (above underground parking that was closed at the time, so 8 steps up) so it wasn't quite as hard as it could have been.  Got her moved in and settled, and headed back home.




Saturday, William had an all-day meeting, so Aaron & I took the kids to their soccer games.  He made it to all three of the games that day.  (Joseph's 1st game is next week.)

Then last night was a highlight of our year.  We were able to go to the annual local SOFT picnic.  It's a fun gathering for families who have been touched by Trisomy 18, 13 and other related disorders.  Aaron was one of three miracles there.  Last year, I didn't get my camera out.  This year, I almost forgot again.  But I did remember towards the end and we got some shots of Ashton (T18, 13 years), Arianna (T13, 6 years) and Aaron, along with Dr. Carey.  LOVED being able to spend time with other families who are or have walked this path.  So many angels gone on before, gone but definitely not forgotten.

Every single thing changes and is changing always in this world.  Yet with the same light the moon goes on shining.  

~Saigyo