Sunday, September 25, 2011

Long, long week

Okay, it has been a crazy week around here.  As you know, Aaron came home on Tuesday from his "same-day" surgery on Friday.  When he was discharged, his heart rate and oxygen usage was still quite high for him, but we'd done everything we could for him at the hospital and it was time to come home.

As time has gone on, he's done a little better each day.  Finally, last night, I think we could finally say he was back to his baseline heart rate, and close on his oxygen.  But I still grounded him.  He LOVES to get out.  When we put him in his car seat or stroller, you can just see the joy on his face.  But I decided we just can't take any more chances and he's just going to be at home until his 15 month check-up on Wednesday.  So he and Daddy stayed home from church together today.

I was asked to share some thoughts with the Laurels (16 & 17 year old girls) in church today about the worth of souls.  I was so grateful for the opportunity to talk with them.  The lead-in was about how we lived before our birth in heaven.  I started by telling them about deciding we were supposed to have another baby.  The impression was so strong that I wondered if I would need to be able to draw on that memory.  Of course, I learned later that I would.  Then I spoke about how peaceful and uplifting it was to be with Aaron in the NICU.  The veil between this world and the next is so thin there.  There are so many precious spirits coming too soon, and some leaving too soon and the staff seemed to recognize that there was a unique privilege in being able to minister to these little angels.  I know that hasn't been the experience in so many places, but we were blessed that it was for us.  I think, perhaps, the reason it is so easy to see the light of heaven in Aaron's eyes, is that he has to work so hard to stay here, just to sustain his life.  And I am grateful that he is willing to do so.  He has taught me so much, and influenced so many lives, even as fragile as he is.

On Monday, William's grandmother, affectionately known as "Muttie" to so many, passed away.  She was almost 98 and had lived a long and full life.  All of William's siblings came in from out of town, most with their families.  After the viewing on Thursday evening, several came back to our house for snacks and to practice music for the funeral.  Then Friday was another viewing, the funeral, the burial, and a family dinner.  And then everyone over again.  And Saturday we had a crazy game time for a few hours before people started leaving. All in all, I told someone that I hoped Muttie was having as much fun at her party as we were having this weekend.  I'm sure she was.

Muttie was a remarkable woman.  I remember she would often tell me that I was doing a Marvelous job with my children.  That was her word for me.  And when she liked something it was "Vundebar".  She was at baptisms and blessings for as long as she could.  She even traveled to San Diego for baptisms until she became too frail.

Of course, the week wouldn't be complete without some excitement.  Friday, Aaron was still higher on his oxygen than I wished for, so I asked a nurse to go along with us.  We took his oxygen concentrator and his electrical cords along with us and plugged him in during the viewing in a classroom off to the side.  He had a marvelous time waving and smiling at people as they came in the door.  Then at the cemetery, Jessica stayed in the car with him so we didn't have to try to get him out again.  But that wasn't the exciting part.  I have a car charger for the ventilator.  It's supposed to work.  Notice the word "supposed".  Yeah, that was not the day to discover that it wasn't.  By the time we were having dinner, I noticed that we were getting low on battery, so we headed out and were soon on our way.

BYU was having a Friday night game as well, so traffic on the I15 was pretty slow.  As we hit Point of the Mountain, (about 20 minutes from home with no traffic) we got a low battery warning.  That was not fun.  AND Aaron's oxygen tank decided that it was about out as well.  So Jessica crawled back to get another tank and grabbed his emergency go bag.  We got him switched over to the new tank and pulled out his ambu bag and got it ready for when the ventilator quit.  Now, we've bagged him before, but he really doesn't like it, and I wasn't looking forward to having to do it.  So William drove as fast as cars in front of him would allow, Jessica kept a close eye on him, and I kept silencing the "low battery" alarm so it wouldn't drive us all nuts, and prayed, prayed hard.  We're supposed to get about 20 minutes from the start of low battery until the ventilator quits.  It may be that we were getting a little power, and it may have been the power of prayer, but it was 35 minutes from the time the first alarms sounded until we pulled into the garage.  Five minutes out, I called home and told Jonathan to get a long extension cord, plug it in to wherever, and run it out along side of where we would park.  We pulled in, Jessica jumped out, and handed me the plug and we got him powered back up.  Much more excitement than I really thought I wanted.  But I am grateful that I would have been able  to help him.  I thought about calling 911, but we really would have been able to handle it without them.  It's just there was a lot of adrenaline running, too.

It was after that, I decided that Aaron was grounded.  But all in all, he's doing well.  We're even back to enjoying lots of big smiles.

Tuesday, September 20, 2011

We're Home!!

We're Home!!!!  So nice to be back.  Aaron obviously agrees.  What you can't see is the way he snuggled into his bed and fell fast asleep almost as soon as we got here. 

Yesterday, we did a little more labs work-up and decided that he was fluid low, or dehydrated.  He had gotten a couple of fluid boluses through IV and he got another one last night.  Each one helped just a little with his heart rate.

I went to sleep last night praying that if there was something else, something we were missing, we would find it this morning.  I know so many others were praying for him as well.  As I went to sleep, I wondered if it might  be worth it to have pulmonolgy get involved.  This morning, I remembered something else. 

Since early last December when we found vent settings that worked for him, he has done very, very well on those settings, until something stressed him. It had to be a major stress, because all those little tracheitis infections didn't bother him at all.  But he was sailing along, until he got pneumonia.  After pneumonia, he couldn't tollerate those settings and had to be increased.  Then, after his lip surgery I started seeing some signs that he needed more support.  The day that his lip started to swell, I called up to the hospital and got permission to increase his settings a little more.  Again, his body had been stressed.  Well, this was a big stress.  Not only did he have surgery, but he still has the pins in his feet and his tendons have been clipped.  We talked to the respiratory therapist and increased his settings about mid-day.  Guess what!  He's been MUCH happier. 

Yesterday, William coaxed a smile out of him, but it was a lot of hard work.  Today, he and I had a wonderful time playing before we left.  And when Deborah got to the hospital, he couldn't have been more thrilled. 

Long and short, I'm so thankful for answered prayers, both mine and everyone else's.  I'm thankful for caring doctors who go the extra mile to try to help us.  And I'm grateful to be home.  Probably almost as thankful as Aaron is.

If you think my hands are full, you should see my heart.

Monday, September 19, 2011

Swollen Piggies

Lying sideways in bed, becaue of course,
that's the most comfortable way.

6:30 a.m.  Still no change.  He was so agitated last night that we finally gave Ativan to help him through it.  After that, we started piggybacking Tylenol & Motrin.  I think I’m going to ask for a trach culture and VRP this morning.  I need to check on the BMP they pulled last night and they’re also going to redo his BNP and see where that’s gone.  I can’t think of anything else.
Right foot, what you can see is the top of his foot
where it is trying to swell out of the cast.

10:30 a.m. – There doesn’t seem to be a need to recheck his BNP (measures heart stress), so we’re not going to do that.  But he is showing some signs of dehydration, so now he’s getting a fluid bolus.  They’re also going to pull some extended blood work and a viral panel and trach aspirate.  This morning we discovered that his feet (or what we can see of them) are really swollen.  So ortho has been paged to come back and take another look.  It may be that his body fluids are distributed funny, swollen in his feet and dry elsewhere.  There’s a name for it but I can’t remember now.  So we’re still looking.  Not much chance of being sprung today, but IF his virus panel comes back positive for something like the common cold and IF we can resolve the swelling in his feet, we may be out tomorrow.  Hoping, hoping….
Left foot trying to swell out the top.

Sunday, September 18, 2011

WARNING:  Today's post is full of medical terminology and acronyms.  I haven't translated most of them, because that's just beyond the brain power right now. 

But the long and short of it is, heart rate is still quite high.  Cardiology is not concerned and they explained why and I'm comfortable with the explanations. We're re-exploring the possibility that it's pain/discomfort related even though he doesn't act like it.

Sleeping exactly sideways
in his bed.  He kept wiggling
and moving until he managed
to get in this position.
Then he was comfortable...
Also, this evening, I had a wonderful phone call from Caleb's mom, Jeannette.   She’s concerned about Aaron and wanted to see if she had some ideas that would help. I am so grateful that she was willing to take the time to do this. It’s because of Caleb that we’re still here. I was so uncomfortable going home, largely because of him, that I asked to stay and I’m glad I did. She is such a marvelous woman and I am so blessed to call her my friend and sister.

So, with the above warning in mind, here's all the nitty-gritty details of the past 24 hours or so.

Saturday evening,
7:00 p.m.  Okay, two big dirty diapers and one small one.  No change in the heart rate.  He’s really got us stumped.  See, this is the crazy part. His other vitals are all GOOD. BP, respirations, fluid output, etc. He is on a little more O2 than usual. He's been on about 1-1.5 lit at home for the past few weeks and we're sitting at 3 liters. He doesn't act like he hurts at all, and when we added Lortab to the Motrin today it didn't touch his heart rate, so I don't think it's pain. He hasn't had any morphine or anything besides regular Motrin since yesterday afternoon, except the one dose of Lortab this morning.

So we're not going home tonight. His doc felt he was lower on his HR, but he was also sound asleep and way above baseline there. So we're waiting for him to wake up and be playful. If he's above about 140, they'll look at lasix and maybe a blood gas and some other labs, even though it doesn't look like there's extra fluid. And if that doesn't work, they'll get in touch w/ cardiology. But honestly, every time they contact cardio about something new, we do another echo & EKG & they look better than the previous ones. I just don't know what's going on. But I know I don't want to go home and come right back again.

9:00 p.m.  We’ve done a chest x-ray, even though there are no clinical signs indicating a need for it because we’ve almost run out of things to try.  He’s in the high 120’s right now, but sleeping.  He was mid 150’s when awake.  In the past, his high heart rate alarm has always been set at 160 (kind of a random number, just meant to make someone notice, not necessarily dangerous)  and it NEVER went off.  Sometime in the 24+ hours we’ve been here, can’t remember when, it was adjusted to 170 because it was going off so often. (For reference, his heart alarm is set at 220 at home, but if it ever hit that, we’d be calling for help.)

One T18 mom suggested we look at a possible UTI because sometimes her daughter’s manifests that way.  So if the x-ray doesn’t show anything, we may look that route.  It’s just so strange that nothing else seems to be involved here.  And he seems to be quite a bit more tired, but that may just be me looking for something.

Sunday morning 9:00 a.m. – We’re stumped.  Urinalysis came back negative.  Chest x-ray looks as good as it ever has.  We can’t get a good weight on him because of his casts, so it’s hard to tell if he’s retaining or not, but he doesn’t look puffy.  They’ve pulled a CBC and those numbers look pretty good.  In fact, his hematocrit (would measure for anemia) is within normal for the first time in ages, if ever.  His blood gas suggests that his kidneys are holding onto bicarbs which is increasing his CO2 levels a little.  That’s the opposite of what he used to do where his CO2’s would be high and cause his bicarbs to increase.  It’s really early to see signs of infection, but we’re watching and there are none.  There was almost no bleeding at all in the OR, but again, if he was bleeding, it should show something on his CBC.  He is more tired.  He slept almost all afternoon, and then again really well last night.  He never woke up for his late evening playtime.  And after sleeping like that, he should have been awake and active, but he slept all night except for a brief period right around 2 a.m. 

Long and short is, we really need to figure this out, or at least have it resolve.  It’s hard on a heart to be beating too fast for so long.  This is not what he needs.  And who knows when we’ll be going home…
Noon:  Cardiology just stopped by.  They feel that from a cardiac standpoint he’s doing well.  They’re not worried about heart failure because he’s had a normal rhythm the whole time and he trends up when active and down when asleep.  So it’s normal trends, just higher than normal.  They recognize that he’s tachycardic, but feel it’s due more to a response in the body than the heart.  Or, in other words, the body is telling the heart it needs to go faster for some reason.  Last night they gave him his previous lasix dose, but it was really tiny.  He had essentially outgrown it before we stopped it.  So they’re recommending that he receive a dose that is based on his weight and see what happens.  Right now, he’s happy and alert and playing with his toys. 

7:00 p.m. – So we’re looking at pain/discomfort management again.  The doctor has scheduled Lortab every 6 hours through the night.  Unfortunately, he doesn’t much like Lortab.  Right now he is beyond exhausted, but just cannot fall asleep.  I think when he does, he’ll be out for a long time. 

7:20 – Finally out.  Hoping he stays that way.  His night nurse has been alerted to his trouble relaxing and if it happens again after his 8 o’clock dose, then we’ll contact the doctor and try to come up with something else we can do for him, maybe piggyback Tylenol & Motrin??

8:00 -- I may have spoke too soon.  Lortab was 20 minutes ago and he's restless.  It could be a very long six hours if it's caused by the Lortab....

Saturday, September 17, 2011

Saturday Morning and a Holding Pattern

9:31 a.m.  Aaron had a fairly quiet night, medically speaking.  My teenage wanna-be played most of the night with his toys.  He was also sad and crying quite a bit, at least for him.  His heart rate is still on the high side, so we’re not on our way yet.  He doesn’t act like he’s in pain.  In fact, when he cried during the night, we’d suction him and pull out some thicker secretions and he’d calm down.  And he plays pretty vigorously with his toys.  But it may be that the post-op stress on his body is elevating his heart even though he’s not showing signs of pain.  So for now, we’ve added Lortab (similar to Tylenol but with a narcotic component) to the Motrin to see if that helps.  He got the Lortab almost an hour ago, and another dose of Motrin 20 minutes ago, but no change yet.  He’s still in the upper 160’s instead of down in the lower 100’s.  We’ll watch for a couple of hours and reassess.

1:00 p.m.  Aaron is still quite high on his heart rate.  The Motrin/Lortab really didn’t seem to do anything for him.  In the last hour, he’s also gone from needing 1.5 liters of oxygen to using 3 liters.  The next step is that maybe his digestive system is a little backed up, so he’ll get some “help” there.  If he poops and his heart rate comes down, we’re out of here.  If not, then we’ll look at some labs and other things to see if he’s retained more fluid than we thought and if he needs a diuretic.  I’m grateful they’re not rushing us out of here.  There were a couple times over the winter when we went home only to turn around and come back very quickly.  That is truly dispiriting.  Much, much better to just stick it out a little longer.  It doesn’t mean we won’t be home today, but if we are, it’s likely I’ll be fighting game traffic.  Or maybe I’ll wait until the game has started before heading out.  Basically, we’re in a holding pattern here…

Friday, September 16, 2011

Post-op update

In the recovery room with his
signature "antenna."  The only
sure place to put his IV is in
his scalp.
We’re in a room now and Aaron seems to be resting peacefully at the moment.  Hopefully it will last for more than a moment.  We decided that we’d stay as a precautionary measure.  He’s pulled some funny stuff before following surgery and I really don’t want to do that at home.  He’s still a bit high on his oxygen and his heart rate just doesn’t want to come down where it belongs.  That may just be the pain talking.  I hope so.  His sound asleep heart rate is more like his awake-and-playing heart rate usually is.  And when he gets upset, well, let’s just say it’s too fast.  Not call-cardiology-right-now fast, but faster than we’re super comfortable with.  But with pain meds on board and food in the tummy, maybe he’ll have a decent night.  The plan is for a quiet, boring night and discharge in the morning.  We’ll have to wait to see if Aaron has read the same script…

Feet Surgery

Waiting to be called for surgery

8:30 am – The OR just called and Dr. H.has the pins in both feet and feels really good about them.  Today started really early, in fact, earlier than it needed to.  I just couldn’t sleep because I was afraid I’d oversleep.  Even set two alarms, one for 4 a.m. and one for 4:10 a.m., and then got up before they went off.   We left the house just a few minutes after 5:00 and got her about 6:00.  They took Aaron back at 7:45.

As I was waiting for the stroller to come back, another couple brought their little girl down.  The way it works is you walk down the hall with your child and a nurse or doctor, or whoever is taking them back.  Then you come to some striped tape on the floor and just beyond is a set of double doors.  That’s where you say goodbye and hand over your baby.  At that door, it’s always your baby, no matter how old or big they really are.  I’m afraid I’ve gotten used to it now, or I’m just stuffing it all down, because it’s not as emotional anymore.  Don’t get me wrong.  I still worry.  A lot!  But the first two times they took him, it was all I could do not to run after them.  Now, it’s not quite as hard.  Anyway, I saw it all again, so vividly, as they handed over their little girl.  Mom was crying quietly and Dad looked worried, about both his baby and his wife.  The patient was having fun playing until it was time to leave Mom.  Then she wasn’t so sure either.  At least Aaron’s still very willing to go with someone else.  I think it would be close to unbearable to have to let him go knowing he was upset.

Close up of one of his casts - pre-op
9:00 am – Dr. H. just came in and she said his feet look great!  He also did really well in there.  She’s calling the attending from the Palmer team (his admitting team on the floor) to come down and make a plan with me for where we go from here today.  She also wrapped his casts in fiberglass to help keep him from banging off the plaster!  I think they’re blue.  Anyway, they will have to custom make his braces for his feet, so we’ll go in to Shriners in three weeks to have the casts off, make molds for braces and then recast one more time.  After that, he’ll have little ankle high braces that he’ll wear most of the time for the next three months, and then hopefully, we’re done!  I may have to find a way to pad his cradle better, or he may beat it to pieces before then.  Can’t have him doing that. 

Monday, September 12, 2011

15 Months Tomorrow!

Left - Aaron last week playing with some toys.
Right - Aaron one year ago in the same size corner chair.
He's grown so much!!
Aaron is doing really, really well!  It is so fun to watch him learn and grow.  Because he has low muscle tone, it's hard for him to support himself.  Last week in therapy, he actually managed to pull himself from a side lying/sitting position to upright!  This is a HUGE milestone.  It was so exciting!  He also is starting to put together cause/effect relationships and play with some of his toys.  One of his therapists brought him a new chair because he's outgrown the cut-outs on the old one.  He's learning to bang toys on his tray to make noise.  I know this may not seem like a good thing to a lot of parents, but it really is an important milestone.  I have never had to teach a child this before and so I missed out on the joy and excitement as they figure it out.  Waiting and watching for these milestones makes them that much more fun.

Aaron is also really enjoying his hearing aids.  They help him hear, but also provide new things to throw and chew on.  Yes, they're multi-purpose, but we try to keep getting them back in his ears.  It takes about 20 seconds after I put them in before they turn on.  It's so fun to watch as they do, because his eyes will get really big and you can see the wonder on his face as he hears all the new sounds around him.

Last Saturday, at the SOFT picnic, my pulse/ox monitor (measures amount of oxygen in his blood) decided to quit on me.  It was a different model than we'd had and the battery died after just one hour.  So when we got back to the car, I plugged it into the car charger.  Because it hadn't been working for about 2 hours, it wasn't on Aaron and was just dangling on the floor.  I thought all the Herbie enthusiasts might like to know that my van has a heart rate of 55 beats/minute and an oxygen saturation of 77%.  So maybe there is something to the idea that cars really are alive!  Of course, when I put it on Aaron, it read "System Failure."  They brought me a new one that night.

Aaron now has four teeth, one on top and three on the bottom.  He's going to have to give up a favorite way of being comforted now.  No way I'm going to be rubbing a bottom gum with three teeth in it.  They're sharp!

We've decided to go ahead with surgery for Aaron.  All along, the doctors keep saying, "He's not acting like he's supposed to with Trisomy 18."  Meaning, he's doing much, much better.  He's never had any trouble with anesthesia before and so we're hopeful that this may be a same-day procedure.  The doctors at Shriners have consulted with cardiology and his admitting team at Primarys (who are all very familiar with him) and the plan is to admit him after surgery with the option of going home same day if he does really well.  In fact, that's what they all expect, but want to play it on the safe side.  It's scheduled for Friday morning at 7:30.  Please keep him and his doctors in your prayers.

I was in Costco the other night and my cashier and a bagger were talking about working with another co-worker.  They were talking about her with a little bit of trepidation and I thought I heard something sad.  So I asked them point-blank about her.  Turns out her toddler was killed in an accident not too long ago.  My heart broke for her, and also a little bit for them.  As I left the parking lot, I realized what it was I wish I had said to them.  I would have told them, "Please, find out her son's name and use it.  You won't be reminding her that he died.  She will always know that.  You'll be letting her know that you remember he lived."

With cold and flu season approaching, we need to become more careful again with Aaron.  Already, we're experiencing an uptick in the colds that are in our home.  I'm sure they're coming from that incubator called "school."  Anyway, while we love to take Aaron out, and we really appreciate all the love and concern shown to him by others, it's time to curtail his exposure just a little bit.  I really hate having to tell people to stop touching him.  I don't want to offend them, but I want even more for him to be well.  Last year I made a blanket to go over the car seat with a picture of him and "Please don't touch, I'm fragile" on it.  This year, he wouldn't be so happy all covered up.  He wants to be able to see and look at everything.  So this morning, I used some software, one of those ad magnets that come on the phone book, some clear packing tape, and a hook from the hospital to make a tag for his stroller.  I think it turned out really cute!  Hoping it gets the message across without hurting anyone's feelings.

On a happy note, we finally celebrated Michael's 5th Birthday with his friends.  His birthday was last July but his party got derailed when Aaron had to go back in to have his lip redone.  Last year, on his 4th birthday, Aaron was in the hospital in heart failure.  I came home that evening to spend some time with him for a family party, and went back the next day.  Michael is such a wonderful big brother to Aaron.  He loves him so much and is so careful with him.  It would be so easy for him to resent him or feel put off by him, but he doesn't.  He just accepts him and prays for him daily.  I was reading some old Facebook status updates from a while ago.  One day, Michael asked me if Heavenly Father heard him when he prays for Aaron.  I assured him that, yes, He most certainly does.  And He probably hears Michael's prayers more than anyone else's.

Monday, September 5, 2011

To Operate or Not?

Today is a good day because:

Our happy boy!
  • Jonathan (15) fixed the kitchen faucet that was dripping, without any help from me.  He just did it!
  • Deborah (19) went to the store and bought the stuff for an oil change.  When she got home, David (17) & Jonathan changed the oil in the car, and it's only had the "maintenance needed" light flashing for two days.  Again, without help (at least so far).
  • Trach change and circuit change happened today without any blood or tears!  It's been several weeks since I cried, and a few weeks since we've seen any bloody secretions or blood around the opening, but this is the first time Aaron hasn't cried at all!  YEA!!
  • We're also about to sit down to a (fairly) nutritious dinner as a family, or at least with everyone who is here.  We miss you, Mary!  Hope you're having fun at BYU.

Last week was such a busy week.  Aaron had appointments with orthopedics at Shriners for his feet, an IFSP (Individual and Family Service Plan) meeting with his Early Intervention team, ear check with his pediatrician, plus two picnics and a family party.  Aaron even made it to a soccer game on Thursday evening.  Big brother, Joseph, played so hard.  The team lost 0-1 on the very last play of the game.   The big news for the week is that the bones in his feet seem to be shifting.  However, that brings us to another dilemma.

Nana, who passed away about
3 weeks ago, collected beanie babies.
Mom brought one for each of the
great-grandkids.  This is Aaron's.

We had not planned to do surgery on his feet.  In fact, his orthopedist recommended against it.  But she's now changed her mind.  He is doing so well, and his feet are doing so well, that they'd like to do a quick surgery.  They have always planned to partially clip the tendon so that it would lengthen as it heals.  However, that alone rarely has good or permanent results.  When a pin is placed in the bone to hold it in place while the tendon heals, the results are almost always permanent.  So that's what she wants to do.  She said it would be possible to do it under local anesthetic, but probably much more traumatic and difficult for Aaron.  Because he is doing so well in every way, she wants to make it easier for him to learn to balance and maybe even walk.  Currently, surgery is scheduled for September 16th.  He would wear casts for another month after that, and then switch to braces that he would wear intermittently.

Playing with his Beanie
Elephant from Nana.
Honestly, if not for little Caleb last week, I'm not sure I'd even think twice about this.  And I know Aaron is not Caleb.  But Caleb has touched my life in so many wonderful ways, and I can't help but be really nervous about this.  This precious angel will be remembered at a Celebration of Life tomorrow and my heart is breaking.  So please, pray that we will know the best course of action for Aaron.  I think we've gathered all the information that we can.  Cardiology has been asked to weigh in on the surgery and it would be done at Primary's with a cardiac anesthesiologist.  His regular admitting team has been alerted and asked to be aware and ready to admit if he needs it, but they feel that it will probably be an out-patient procedure.  See, another benefit of being vent dependent is that we don't have to extubate and be able to breathe on his own.  He just has to be at this baseline vitals and be able to be comfortable.   So please, please pray that we will feel confident of the best course of action for him.
Snuggling with his
"Child of God" lamb from
Prenatal Partners for Life --
Thanks, Mary Kellet

The fun part of the week was Saturday evening.  I WISH I would remember to get the camera out more often.  I even had it with me!  We went to the local SOFT picnic (Support Organization for Trisomy 18, 13 and Related Disorders).  It was so much fun to meet other families.  Most have angels that have gone on ahead, some almost 30 years ago!  But there were two other very special girls:  Ashton, almost 12, full T18 and Arianna, 4, full T13.  I WISH I had gotten a picture of the three of them together.  I can't say how much it meant to me to be with these parents and hear about their experiences.  A wonderful, wonderful time.
Third set of casts -- Race cars!

Love Elephant, Love Aaron