Monday, October 29, 2012

Ladybug Lessons

Our children are much like ladybugs. Ladybugs are found in all climates and come to us in all seasons of our lives. Their life cycle is apprx 4 weeks, which ties the ladybug to the energies of renewal and regeneration. The shorter life cycle teaches us how to release worries and enjoy our lives to the fullest in each moment. 

We do not love the ladybug any less because of the shorter life cycle, but we cherish the "let go and let God" peace about them. A ladybug, with it's bold and distinguishing features, brings joy to us, as much as it has a protecting nature, and eats parasites in our gardens. It is amazing that our children, as well as ladybugs, are harmless, delicate, and fearless...regardless of their size. 

Ladybugs are messengers of promise as they reconnect us with joy of living and loving life as it is meant to be. When a ladybug appears, it is telling us to get out of our own way, and allow the wonderful Spirit to enter our lives. Thank you for opening your wings and flying to us, lil ones...and for helping us see what a "short life cycle" can hold.

This was written by another Trisomy mama, my friend Kelly Essem Whister.  Her daughter, Kayli, is loving life trisomy-style at 3 1/2 years old! 

Sunday, October 28, 2012

What We're Doing

This week has been a challenge, but they say challenges are meant to be overcome.

I had surgery on my shoulder on Wednesday and it went really well.  I'm weaning off the high-powered pain killers and doing okay.  I've only had Tylenol since last night, but of course, it's still really stiff and I have to be careful as I move.  I have enjoyed getting a whole lot more sleep these past few days than I'm used to.  Combination of some crazy meds and nothing really to do.  It has been nice to relax.

Deborah got into a crash with four of the boys on Friday night.  It wasn't a big one.  In fact, the two youngest were really excited about it.  They have no idea the headache that comes with trying to get the insurance straightened out.  BUT, she called about it literally two minutes after I took my pain and nausea medication.  The kind that make it difficult to even stand up after taking.  And all I could do was sit and wait for them to make their way home.  I hate feeling helpless and just waiting.  Not my forte.  Fortunately, we have a wonderful home teacher who went out with his wife and gave moral support.

"Whiteboard" for Aaron's room
You can't see it, but the fabric has
stitched Winnie-the-Pooh
characters in the blocks.  Very cute.
Aaron has been doing really well.  He's enjoyed having his nurses here around the clock.  His sleep schedule is completely messed up, but that means that generally each one gets awake and asleep time with him.

Board that hangs in the kitchen.
It has a creamy textured fabric
backing.  Now I just need a
decent whiteboard marker!
Because of the shoulder, I'm doing the one-handed typing thing right now.  It makes it pretty slow, but I did find another project to work on.  I've been trying to come up with some cute chalkboard ideas to write reminders, etc on for the kids.  Only problem, I seem to be the only one around here who doesn't have a problem with chalkboards.  Whiteboards was what I was told would be better.  But I don't really like the basic whiteboard look.  And have you looked at the nicer ones lately?  Pricey!  So I started looking into how to make your own.  Turns out that glass, or a fiberglass substitute, make great whiteboards.  Wait a minute.  I've got picture frames.  And I've got fabric.  So I grabbed them (slowly, shoulder, you know) and brought them upstairs.  It was a little tricky working with just my left hand, but I think they turned out okay.  Not bad for materials on hand and an hour or so (again, because I'm doing everything so SLOOOOOOW these days.)

Obstacles are those frightful things you see 
when you take your eyes off your goal.
              Henry Ford

Monday, October 22, 2012

Ups and Downs

Aaron has been doing so well off the ventilator that I started to think it might be clear sailing ahead.  Shouldn't have thought that.  Shouldn't have gone there.  See, it probably shows that I've never trained for a marathon or anything long-term endurance wise.  We've had a bit of a set-back.

Usually, we increase his time on Sunday.  Monday and Tuesday are more difficult.  By Wednesday, he's settling in, and by Saturday, no problem!  Not so much this week.  He continued to have trouble all the way through.  And on Friday we went to do labs to measure exactly how he was doing.  The answer?  Not so great.  But I already kinda knew this because he was needing a lot more oxygen as well.

Plus, he might be catching a bug.  Or it might be the weather change.  Who knows??  It's the way we roll around here.  Friday night into Saturday we had to cut each one of his trials short.  So on Saturday the decision was made to just give him a break and let him rest.  We're not going to do any more trials until after I recover from my own surgery this week.  It's just not worth it to be stressing his little (but getting bigger!) body.

I don't know exactly what it is, but he's still a bit junkier in his lungs.  We had to use albuterol to open him up yesterday, the first time we've done that since the fires in July.  But he sure was happy at church!  He was grinning and wiggling and setting off tons of alarms!

So for now, we're taking it easy.  Then next week, after I've recovered some, we'll start trying again.  I'll back him up a little and we'll go from there.  It may be (very likely!) that we've hit a plateau.  And it's certainly possible that we've hit the limits of what his lungs can handle.  So this week we'll rest, regroup, and come back and rework the plan.

On another note, I decided it was time to get pictures of the boys this week to update the wall.  Most of them turned out pretty good.  (The three older ones who've graduated get to be "Forever 17".  I'm probably not updating those.)

Aaron, well, let's just say he's not always reading from the same script.  The first time we tried, he wanted nothing to do with being outside.  He was tired and just wanted his bed!

The second time, if he was smiling, and there were some good ones, he wasn't looking at mama.  And he got tired of sitting up pretty quick.  I'm afraid I may be out of good weather to get outdoor shots, so his may have to be done inside. But it was sure funny to watch him!

Are we done yet??
Done?  Please???

On another note, we spent all last Sunday up at the hospital because I couldn't get the sore on his g-tube to stop bleeding.  And yes, I know how to stop a bleeder.  But after 20 minutes of dark red blood pooling and running down his stomach, and it had gotten a little worse every day since his last treatment four days earlier, it was past time to do something.  So away we went.  They used more silver nitrate to help re-cauterize it and we tried again, to be gentle.  This time it seems to have worked.  The bleeding has been a little less each day and yesterday I was actually able to clean the area fairly well (haven't been even touching it if possible) without any more blood.  So hopefully, that's behind us now.

Mary and David got all their dental work done for their missions last week.  David's was fairly minor as he only had fillings and one wisdom tooth that had already erupted taken out.  Mary had a much rougher time with all four impacted wisdom teeth needing removal.  Thank you so much for all the prayers offered for her.  The pain was really difficult to control at first, but once prayers were said, it was truly wonderful to see the improvement.  They're both almost done with their paperwork.  At the rate their going, we'll probably have mission calls before Thanksgiving.  

My shoulder surgery is this Wednesday.  Please keep both Aaron and I in your prayers.  As long as the surgeon doesn't find anything unexpected, it shouldn't be a difficult recovery, about a week or two until I'm pretty much back to normal.  But Aaron has proved time and again that he can go from fine to struggling in much less time than that.  So please, pray that things go smoothly, and that he just enjoys having his nurses around 24/7 for the next week, and he'll be content to stay home and play.

Make no little plans; they have no magic to stir men's blood...
Make big plans, aim high in hope and work.
                                                                Daniel H. Burnham 

Tuesday, October 16, 2012


One Week Old
I have to give a shout-out to one of the best daughters a woman can have.  21 years ago (plus one day) Deborah made me a mommy.  She came into this world tiny, just 5 pounds, 11 ounces, but full of spunk and love.  She's still small, only 5'2" (which she happily blames on me) and still full of life.

Three years ago, she finished her first year of college just as I was really needing to slow down a lot more at the end of Aaron's pregnancy.  I basically was able to spend the last two months of my pregnancy parked on the couch, directing traffic, while she did the footwork.  
Telling secrets...
When Aaron was trached and given his g-tube, she was willing and able to learn how to care for him, even in an emergency.  This makes it so I have another set of willing hands around to help out, and lets me get out a little bit more.  
She's an awesome big sister to the others as well.  She spends time talking about writing with Mary, helping Jonathan and David with dance, and runs Matthew to early morning seminary.  She jokes and helps with Joseph, Andrew and Michael as well.  

As a child, she never cut her hair.  Never that is, until she learned about Locks of Love and girls that couldn't grow their own hair.  At the age of 12, her hair reached below her waist, and she cut it all off so someone else could have hair.

We are so blessed to have her in our lives.  Somehow, she's survived growing up with two parents who'd never done the parenting thing before.  She broke us in, usually gently, and helped us become who we are today.  
She now works at an assisted living center, helping those who can no longer help themselves.  As a baby, we called her "angel."  She still tries to be one today.

Love you, Deborah!  Happy Birthday, one day late.

A daughter is a little girl who grows up to be a friend.  
~Author Unknown

Monday, October 15, 2012

Wave of Light

Today is International Pregnancy and Infant Loss Day. Across the globe, candles are lit from 7-8 p.m. in each time zone, creating a wave of light for 24 hours in memory of precious little ones gone too soon.  
My heart goes out to each one I know. Those in my blood family, married family, and trisomy family. Those I've met briefly, and those I've known for years.
I know their babies are missed, now and for the rest of their lives. My prayers are with you, especially tonight.

Wouldn’t it be tragic if we didn’t feel great sorrow
when we lose a child?
How grateful I am to my Father in Heaven that
He allows us to love deeply and love eternally.
How grateful I am for eternal families.

Saturday, October 13, 2012

Do You Think?

I'm slightly irritated, slightly amused.  I know that support staff (read "receptionists, secretaries, etc) don't necessarily need medical training to work for the medical profession.  But surely, you'd think they'd pick up a few things along the way??

Aaron's humidifier quit working late last night.  He has one because his trach bypasses his nose.  Now, I know when we have a cold or sinus issues, we'd like to ditch ours, too.  But really, that little thing on your face plays a pretty important part in your breathing.  It filters, heats and humidifies the air before it hits your lungs.  And believe me, you're grateful for it.

So, in between the vent and Aaron is a heated humidifier.  Except last night, it wasn't heating.  And not being heated also means it doesn't pick up as much humidity.  Short term, it's not that big a deal.  But long term, not so good.  That was one of our challenges in going to Arizona.  He had a filter that went on the circuit which helped to trap the heat and humidity already in his body, but we still had to add more with sterile saline over the 14 hour trip.  And on the way down, I didn't do enough and he was junky and unhappy for the next several hours after we got there.

I decided not to call late at night and just wait for morning.  We'd watch and he would be getting some from the cool water, just not as much as normal.  This morning I got someone who I guess isn't around enough to pick up on some things.

"Hi, my son's humidifier for his ventilator isn't working."

"Well, our business office isn't open until Monday.

"Um, you don't understand, this can't wait."

"I don't know what we can do for you."

Okay, now I'm thinking, you're part of a durable medical equipment company.  And you're obviously at work on the weekend, because a lot of your equipment is things like ventilators, humidifiers, feeding pumps, etc.  It's not a Monday through Friday, 9-5 work environment.  It's not like my sprinkler system won't turn on.  It really is a life and death matter.

So I told her, "You have an RT (respiratory therapist) who is on call.  I need to speak to him."  Fortunately, contacting him was within her skill set.  I'm just grateful that I knew who I needed and what I needed and I didn't let her convince me to just "tough it out."

Now it's been over 12 hours since it quit working and Aaron's going higher on his oxygen and getting junkier.  Secretions are thicker because of lack of humidity.  And I'm still sitting here waiting for him to show up.  But at least he said he was coming...

Wednesday, October 10, 2012

My Head Is Spinning

Playing with his monkey at his visit.
He loves waving it back and forth!

There is SOOO much going on right now.  We had a long visit at Primary's today where we saw Special Needs, Nutrition, ENT, Pulmonology and Respiratory.  Also visited with a social worker about his transition from Early Intervention to Preschool, talked with the clinic nurse about the same and adaptive equipment, and saw Wound Care about the granulation sore on his g-tube.  Then it was time for labs.  All in all, our appointment was at 10:30 and we didn't get out of the hospital until almost 3:00!

But everything went really well.  We have a plan for getting off the vent and some new supplies should be delivered tomorrow.  He also got a "speaking valve" to use, which will allow him to use his voice again.  Or at least, in theory it will.  We've tried it a couple times today and he is NOT going for it.  See, up until now, he's been breathing in and out through his trach, the hole in his neck.  This require him to breath in through his trach, but out through his nose and mouth.  It's going to take some getting used to.  Right now, he's at about 15 seconds.

Finally, all tuckered out. It was about 2 pm and he'd
been up pretty much since 7 pm the night before.
If all goes according to schedule (are you listening, Aaron?) he'll be weaned off the vent right after the New Year.  It's really exciting to see it all laid out!  Over the next few weeks, he'll meet with Audiology, Endocrinology (for his thyroid), and Orthopedics to evaluate his scoliosis.  Yes, his spine curves, too.  Then, the beginning of December, he'll go into the hospital for a heart cath.  They'll insert a tiny tube up through an artery and take measurements of the pressures in his heart.

Then, there's me.  Mine is pretty straight-forward.  I go in for surgery on my shoulder in two weeks.  But that means that there is a lot to do in the meantime to get ready for it.

Which brings me to the head spinning part.  Conference weekend was this past weekend.  As always, it was a wonderfully uplifting spiritual experience.  But there was also a huge surprise coming.  When I got up Saturday morning, I didn't have any children who were missionary age.  By 10:30 a.m., I had three.  President Monson announced that they were changing the minimum age for young men to 18 and for young women to 19.  Deborah, Mary, and David all are older than that.

So began a long weekend of talking and praying and pondering.  By the time they went back to school on Sunday night, Mary and David had both decided that they wanted to get ready and go as soon as possible.  So the bishop was contacted, and appointments have been set up.  Both went to the dentist today and found they need to go back next week for fillings.  David will have a simple extraction of one wisdom tooth (the matching one is just not there at all, lucky him).  Mary will have some fillings and then two days later will have all four of hers taken out.

And in all of this, I'm facing again the realization that the day is quickly coming when my children will be grown up.  And David and Mary both realize that when they go, they may be saying good-by to their little brother for the last time.  Given that Aaron has already defied expectations, I'm trying to not think about how this may be the last time I have all my children together, here on earth, under my roof at one time.  It's a little bitter-sweet, and a little scary, too. 

But I wouldn't change their decisions if I could.  I know it's right for them.  It's a good thing.  And I know the Lord will bless them and our family.  

“It's not so much that we're afraid of change 
or so in love with the old ways, 
but it's that place in between that we fear . . . . 
It's like being between trapezes. 
It's Linus when his blanket is in the dryer. 
There's nothing to hold on to.”
                                                      Marilyn Ferguson 

Tuesday, October 9, 2012

Signs That He's Doing Really Well

Last week, Aaron won a contest
from Neotech.  Here are the goodies
they sent him.
Aaron is doing well, so well.  Two years ago, I wouldn't have believed this was possible.  Some signs that he's doing much better than was expected:
  • I found myself having to think to make sure I was giving out the right kid's birthday when I called about some of his supplies. (And his didn't roll off my tongue when calling about another kid!)
  • I had to go look at a calendar to try to remember when he was last seen, and by which doctor.
  • I don't respond to the first, or even second alarm anymore.  And if there's anyone else around, I often ask them to check on subsequent ones if I'm busy.
  • He's not the one that's woke me up in the night the last few times "mom" has been needed.
  • I haven't updated his medical history since mid-July (right before our trip).
  • When I went to update it today, I had to put in a few communications with doctors, no actual visits, and some feeding changes.  Oh, and a WHOLE LOT of therapy appointments.  It's telling that he hasn't been to the doctor, and he has been around for therapy.  
  • When he's out of his bed (so he can lie flat) he rolls over to his tummy on a regular basis.  He does get stuck because he doesn't have the muscle strength yet to push himself back with his arm and leg.  Kinda funny because it's the opposite of his siblings.  They used to roll from tummy to back and then lie there like turtles, waving arms and legs but not knowing how to go the other way.
  • The biggest change to his regimen has been the up and down and up again of his calories as we try to balance his weight gain with his height.
  • He's up to 2 1/2 hours, three times a day, off the ventilator!  YEA!!!!  This is a HUGE thing.  Most people think it's pretty amazing, and it is.  But the medical professionals, those who understand how 24/7 ventilation actually causes problems for the lungs, they are floored.  Because what he's doing is very rare indeed.  
There's a lot going on here in the next few weeks.  I'm getting everything together because we have our 6-month check-up at Primary's tomorrow with pulmonology, ENT, and special needs.  I'm hoping we see wound care team as well, because his g-tube sore is just not healing.  That sore has been there since May '11.  Yeah, over a year.  It doesn't bother him at all, but it really bothers me, especially when it decides to bleed.  We'll also touch base with the dietician, and may change his calories again, ugh.  

Another exciting development is that he's been approved for his special bed.  The bed will raise and lower at the head, knees, and feet.  It will also raise and lower as a whole component, making taking care of him much easier!  

I've been gearing up to fight for this one.  Many people have told me it takes months of appeals and so on to get this approved. Ours was approved on the first try.  I'm told it may be here before Halloween!  So glad to get what he needs.  This will be much safer for him when sleeping, and will let him move around a lot more when he's awake.  Somehow, he doesn't like trying to roll uphill in his crib.  As he moves more, he'll develop more muscle strength.  This will also translate into better health for him.  It just keeps looking brighter and brighter.

Anyway, I'm also scheduled for surgery on the 24th on my shoulder.  I'm trying to get everything done for him and also manage all the other kids appointments and activities as much as possible before then.   There are a lot of changes in the works for us.  I kinda figure I'll be able to sleep after the surgery when I can't do anything else.  I hope it works out that way...

“I believe that no concern of ours is too small or insignificant.  The Lord is in the details of our lives.”
                                                        President Thomas S. Monson