Eli's Three (but he thinks he's 23!)

I thought it appropriate to make a monkey cake for my little monkey- he frequently comes to me with his hands tickling his armpits and says, "Look mom, I a monkey!"  He loved the cake-

We had a little family party at my parents for him and Jacob- technically it was the day before their birthdays, but who's counting?  Eli certainly didn't care-

Eli is really into Hot Wheels right now.  He was very excited about this Hot Wheels track...

 Unfortunately, we went with the generic brand, so it went back to the store broken a few days later.

 He got the whole 'bite your fingernails at the most in-opportune times' thing from Dallin.  Nice.

I can't tell who is more excited here- Eli or Bryson-

We sure love our little Eli- he is such a character and is always making us smile.  He is just certain that he's every bit as big as his brothers!  He loves to play with them and mimic the things they say and do (see fingernail biting picture above!!)- when Bryson and Dallin are both at school, he misses them so much and is constantly asking, "where my bruvers mom?"

Eli's favorites at age three- (according to him at this moment)

Favorite Color: Red
Favorite Restaurant: Costco
Favorite Food: Um, I [don't] know... chicken nuggets
Favorite Drink: pop (so I asked, "what kind of pop"): soda
Favorite thing to do: Um, I [don't] know... play... somefing! (something)
Best Friend: Megan (Zapalac)
Favorite Movie: Cars
Favorite TV Show: Dora the Explorer
Favorite Toy: Guns
Favorite Animal: fwaffe (giraffe)
Favorite Book: Thomas Goes Fishing

On Unexpected Experiences

Our vacation was a continual lesson in flexibility.  I learned so much throughout the process, quite unexpectedly...

I am so thankful my kids are so adaptable and flexible.  From being quickly shuffled to Jack and Jami's care off and on (mostly on) for three days, to a complete change of itinerary, they were happily along for the ride.  Sure, they were on vacation and having fun, but they are really good at rolling with the punches.

As I've recounted the whole hospitalization experience to various friends and family members, and commented on the blessings we had through it all, so many people have commented on how optimistic I am... and funny enough, I really don't consider myself a huge optimist- not that I'm a pessimist, but maybe more of a realist... I think I see things how they really are anyway!  But the tender mercies from Heavenly Father we had poured out on our family were undeniable... to name a few...

-Jack and Jami came down to San Diego with us for the weekend and thus were able to watch our other kids while we were in the hospital with Dallin

-the closest hospital was not only a childrens hospital, but also had a heme/onc unit and was a top rated childrens hospital

-the hospital was a 10 minute drive away, with no freeway driving and no traffic- that, in Southern California alone, I believe is a miracle!

-how well Dallin responded to transfusion therapy, with no complications of fluid overload or transfusion reactions

-the peace and calm that (except for a brief period of panic when I was told Dallin's initial lab results!) abounded with both Nathan and I

-as for the lost blood?  I really believe that for some reason, Dallin was not supposed to get that blood... maybe a reaction?  I don't know, but I'm glad he didn't get it because the blood he did get worked out just fine.

**as a side note: Jack told us well after the fact, that Saturday morning, while we were at the temple, he went up several times to check on the still-sleeping-Dallin, each time, he paused and watched for up to a minute, checking to make sure that he was still alive... ugh.

Dallin's h&h continues to be stable, which is fantastic because the transfused cells are certainly dying off by now.  The day we left the hospital, some labs were sent off for titers of various viruses that can cause acute hemolytic crisis (that's what we call what Dallin experienced...)- there are hundreds of viruses that can cause it, but there are a few that are notorious and more common- not that it would change anything, but would certainly give me a little peace of mind to know his body didn't freak out for no reason!  As it turns out, Dallin had parvovirus- commonly known as fifths disease- it gives the 'slapped cheeks' symptom which, for most people, is the only recognizable symptom... unless you have a hemolytic anemia (like spherocytosis), because parvovirus also suppresses the bone marrow where red blood cells are made, and if you survive by making red blood cells really really fast because your body is destroying your red blood cells really really fast, well, non functioning bone marrow is gonna put a bump in the road for sure.  The great news is, that once you get parvovirus, you're immune to it, so we can check that one off the list!  And according to Dallin's hematologist, it really is the worst one to worry about.

Try not to smile...

I know I'm partial, but this is about the cutest thing I've ever seen.  I don't think it's possible to watch it without smiling.  My favorite is when he throws his hands up in the air.

The Vacation of Unexpected's - Disneyland

So Disneyland it was.

We ended up going Thursday and Friday.  We had a little surprise upon arrival when we pulled Hailee out of her carseat...

I can count on one hand the number of massive blowouts she's had up to this point in her short little life, but after four kids, I should know that a blow-out happens when unprepared and on vacation.  I didn't have a change of clothes for her, so our first stop was to buy her an outfit.  I ended up getting her Minnie Mouse pajama's- the pickings were kinda slim for her size, and under $50.  Not kidding.

We ate lunch at Tomorrowland Terrace, where the lunches come in Jedi boxes.  The boys dug that, as if cheeseburgers and fries needed more appeal!  Afterwards, all of Brysons wildest dreams came true...

First he received very thorough Jedi training which he took extremely seriously.

Then his skills were tested to the limit in an epic duel against Darth Maul.

He emerged victorious and was promoted from Padawan to Jedi, vowing to always use the Force for good.

The Cotton Candy was just icing on the cake.

Eli and I hung out in Goofy's yard with Hailee as Bryson and Dallin took daddy on a rollercoaster.  Poor kid, there were no real rollercoasters he could go on, he was a good sport though.  

I did get some absolutely priceless footage of Dallin and Bryson with me on a rollercoaster... gotta love the forward facing video camera on my phone!  I'll have to post it later...

I've been trying to get a classic Disney movie every few weeks for the kids to see- to expose them to something other than Cars or Toy Story... As luck had it, we had watched the Sword in the Stone just a few weeks prior, so they knew just what to do:

Dallin was especially dilligent:

At least my boys are consistent...

even at Disneyland they are mesmerized into a trance-like state at the soft glow of television.

At the end of the second day, we headed over to California Adventure.  Eli got to ride the Bugs Life 'roller coaster' (I use the term 'roller coaster' loosely) but it satisfied him.  After a few more rides, everything was closing for their "world of color" show... I have to admit, I wasn't too excited about the fact that everything was closing early, but the show ended up being really neat.  I just wish we'd have been more toward the front instead of behind where the show was...

 

This picture totally doesn't do it justice- it was really amazing... 

The Vacation of Unexpected's - Legoland?

The big reason behind our whole vacation to California (besides taking advantage of Jack and Jami living there one last time before they moved) was to go to Legoland- it was a big part of the kids Christmas.  We had the house in San Diego thru Wednesday, so we planned on Sea World on Monday, and Legoland Tuesday and Wednesday- we'd drive back up to LA Wednesday night after Legoland.  Monday night however, we discovered that during the "January off-season", Legoland just happened to be closed on Tuesdays and Wednesdays.  Of course.  A vacation theme was beginning to develop here.

So we discussed it with the boys.  We laid out the options.  We could do Legoland on Thursday, but it would be a two hour drive each way (with traffic from LA), or we could instead do Disneyland... which, while it would be more expensive, it would be so much closer, open longer hours and would have a lot more rides that Dallin and Eli could do.  It was a no-brainer for Dallin and Eli, but Bryson was absolutely torn.  He lives for Legos, and the thought of an entire land of Legos?  His perfect world...  I was so proud of his decision that Disneyland would be a better choice for the whole family, because I know what he wanted for himself.  So what if the promise of Cotton Candy helped tip the scales *grin*

We decided to spend Tuesday at the beach in San Diego- Bryson and Eli had already spent most of a full day at the beach, but it didn't matter, all three boys had a blast...

Hailee even enjoyed the beach weather...

it was sunny and warm, but the breeze off the ocean was pretty cool, so she ended up with a jacket on most of the time. 

The house we stayed in even had some beach toys for us to use

my boys + shovels and buckets = pure happiness.

Love this picture of my man!

The seagulls meant b.u.s.i.n.e.s.s.  I'm pretty sure they'd have taken off with one of my kids if they thought they could've eaten him!  Anything left unattended was instantly swarmed by a flock of gulls.  One tried taking off with an unopened bag of chips, but it was too heavy to fly away with.  They just stood there, watching and waiting.  It was kinda creepy (Collette, it would have absolutely sent you over the edge!!).  After lunch, when Bryson didn't want the rest of his sandwich, I told him to run really far away with it and throw it for the birds....

they knew exactly what was going on- I'm sure the crust didn't even hit the sand.

The boys literally spent hours running in the waves-

 especially Bryson...

 the freezing water didn't phase him, he loved it,

 and made it so much fun for his brothers.

 Bryson is such a great big brother so much of the time- he is very passionate about life, and wants others to enjoy everything as much as he does too.

 Poor Dallin, he still had the sticky marks from the monitor leads on his chest.

So after the beach, we decided to go to a little restaurant we'd heard about- after driving around for a while, we finally found it, just to learn it's only open for lunch.  Figures.  So we drove some more looking for a famouse BBQ place someone else had recommended... it had a 1 hour+ wait (we were all starving!!!) so we settled for Chuck E. Cheeses.  The kids couldn't have been happier.

The Vacation of Unexpected's - Sea World

Sea World didn't disappoint.  The weather was wonderful, and we had a better idea of what to do there since our visit three years ago.  The kids loved the hands on stuff-

 bat-rays,

 sea stars,

more sea stars...

We all loved the shows, especially Shamu- Jack and Jami's daughter Emma (in the blue shirt) was chosen to be the kid who got to help with the Shamu show, so we got primo seats- it was great-

At the end of the day, we let the kids run around the playground/kiddie area-

with the initial first net, Bryson knew just what to do.... Dallin had a work at it a little, and Eli was clueless, so Nathan went up with him... which was a good thing, because at the end, there is a slide- like the slides at McDonalds- nothing major, just a twisty slide, and they would not let Eli slide down it because he wasn't tall enough! 

He was obviously NOT happy about that...

Honestly, the most enjoyable part of the day was just enjoying my family being all together again.  I found myself constantly taking a sigh of relief that the events of the past few days were over!  I watched in amazement as Dallin eagerly went from one activity to another, and while he rode in the stroller a fair amount, he was a completely different child than he'd been for the past several weeks... months, really!

Vacation of unexpected's - Part Two

I don't even remember how many times I regurgitated Dallin's medical history in the ER.  Rady Childrens Hospital is a teaching hospital, so there were lots of med students and residents... and Dallin was pretty much the most exciting thing going on at that time in the ER.  Initially I held Dallin still while the nurse started his IV, but after several attempts, she called someone else to help- finding veins was really hard since he was pretty dehydrated.  Despite his utter lack of energy, he still had plenty of yell in him, no fight, just volume... he cried and cried, mostly back and forth  between "I really, really, REALLY don't like this!" and "Please can we go home, mom, please!" between his sobs.  It about broke my heart.  I'm usually a rock when it comes to my kids having to undergo medical procedures, from ear surgery to eye surgery, blood draws to shots, I know it only scares them more if mommy is worried or scared or crying.  But during the repeated attempts at an IV start, I had a really hard time keeping my tears in.  His cries were so sincere and it took so many attempts to get his IV in.  Fortunately, when they finally got his IV in, they were able to draw his blood at the same time- one less stick.

We waited and waited.  Dallin slept.  I stewed.  Time passed.  I know how long it should take to get a stat h&h back... thirty minutes...  45 minutes MAX.  An hour after his blood draw, I finally asked our nurse if there were any results yet.  Nothing.  More waiting.  Time was going so slow.  Thirty minutes later, still no results.  The nurse said she would call the lab- they had the blood specimen- it was pending.  Finally, after another 45 minutes, the nurse came and drew more blood (from his IV fortunately)... I could not believe that it had taken over two hours for the lab to figure out something was wrong with the sample!  Twenty minutes later though, a 4th year med student came with some results.  His hemoglobin was 2.9 (normal people should be 12-14, but Dallin's norm is 8-9) and his hematocrit was 7% (normal people: 38-48%, Dallin's norm: 23-26%).  I was completely unprepared for numbers that low.  I lost it- I was overwhelmed and scared and in disbelief- as a nurse, I did not know it was possible to have an h&h of 2.9 and 7% and still be alive... I'm talking heart and/or multi-organ failure followed by death.  We'd been following his blood levels all month, and they'd been stable.... and his symptoms really didn't seem that much worse...

When our {real} ER doc came in a few moments later, I sincerely asked him why Dallin wasn't dead, to which he replied that Dal is so functionally anemic, that his body just knows how to adapt.  I then asked at what point would he have died, could he have just died in his sleep?- his answer was rather comforting- he said that his h&h could have gotten quite a bit lower (umm, there isn't "quite a bit lower" when you're where Dallin was!) before he'd have died... most likely, he would have become completely unresponsive, at which point we'd have brought him in for sure.  He said that kids with chronic anemia are amazingly resilient (ya think?!?)  He further explained that since his body has adapted to functioning with his blood levels as they were, if we transfused too quickly, it would send him into fluid overload and heart failure.  The process of transfusion was going to take several days...

And it turned out, the reason for the delay in the initial results, was that the lab didn't believe the crazy low results.  So they re-ran it a couple of times, then figured the sample was bad and called for a fresh specimen- hence the 2nd draw.

We were transferred up the newly finished heme/onc unit at Radys.  The mural on the wall above Dallin's was kinda cruel:

We'd have much rather been playing on the beach!  Truthfully, I doubt Dallin even noticed it.

After Dallin was admitted up on the unit, the nurse let us know that the blood was being tubed up from the blood bank and should get going fairly quickly- I commented that in my hospital we weren't allowed to tube blood for fear if it getting lost...   Several hours later, it was decided that the blood had been lost in the tube system somewhere.  Really?  Of all things to loose, the blood for the kid with a 'crit of 7 gets lost!  As a result, his first transfusion didn't end up getting started until almost ten o'clock that night.  Because of Hailee, Nathan stayed the night with Dallin- I left shortly after that first transfusion started.

The next morning when I got back to the hospital, Dallins hgb was up almost 2 full points!  His second transfusion was just getting started, but poor Dallin seemed mostly the same as the day before.  Sweet little Hailee was content as could be to snuggle with Dallin and I, or nap in her carseat- she couldn't have been any better.  Dallin perked up a little most of the way through his 2nd transfusion and was thrilled to get to watch Spongebob...  his only complaint was the IV- he really hated it anytime anything was infusing through it.  Warm compresses helped some, but I had to distract him constantly when he was awake. 

Nathan and Jack and Jami took the kids to the Mormon Battalion downtown San Diego- they had a great time-

 Bryson the horse pulled Emma, Jackson and Eli in a wagon

 Bryson was chosen to be a soldier and by all accounts, he took his role very seriously.

Back at the hospital, Dallins 2nd transfusion finished and we went exploring- outside the unit was a wonderful little childrens garden-

we had great fun playing in the warm sun for about thirty minutes before he was tired.  He napped for several hours afterwards and when he awoke, we had a great time doing puzzles and reading and watching tv.  His hgb was up to almost 6 after the 2nd transfusion, and they were wanting it to be at least 8 before discharge.  I had been a little hopeful that we'd be discharged that evening, but his numbers just weren't high enough.

The promise of a portable Wii made the third transfusion so do-able.  He was in heaven...

He couldn't even take his eyes off the screen to look at me for a picture.... I didn't really have to ask for a smile- he was all smiles playing the Wii.

Nathan stayed the night again- Dallin slept well once the transfusion was finished.  The next morning when I got back to the hospital, the doctor was pretty confident Dallin would be discharged that afternoon... after a few more blood tests, we got the word!  The nurses tried their best to get us discharged and off to the rest of our vacation.  Dallin showered (he reeked of hospital) and once his IV was out, he was ALL smiles-

It was absolutely amazing, Saturday I had walked into the ER carrying a near lifeless child, and 48 hours later, he was running out of the hospital excited about our vacation.  We left the hospital at 12:45 and by 1:20 we were hands on with the sea stars and rays at Sea World...

Vacation of Unexpected's - Part One

Dallin remained pretty much the same for the week I kept him out of school before our trip.  Pale.  Lethargic.  Not much of an appetite.  Complaints of sore throats, sore everything, really.  Sleeping ALL the time.  But I was encouraged when my dad arrived at our house to pick us up for the airport- Dallin got up and was running around and jumping- SO excited for the airplane and our trip!

Hailee was super excited too...

Eli and Bryson doing a little refreshing on emergency drills for the plane...

I really wonder what their little minds are thinking as they're sitting on an airplane looking at pictures of water landings, planes crashing and on fire and such...

So we got to warm sunny California pretty late on Thursday- especially once we got the rental car and drove to Jack and Jami's.  We spent Friday morning bumming around- Jami and I did a little shopping for food to bring down to the house we were staying at in San Diego- the kids hung out at home with Nathan... our boys were chomping at the bit to go swimming in Jack and Jami's pool- and were just as eager to get warm and dressed once they found out how cold the water was!  That afternoon we drove down to San Diego- AHH!  I could never live in Southern California- the traffic is so ridiculous!  What should have taken 2 hours or so, instead took almost 4.  The house was worth it though- it was beautiful and was so nice to have lots of space for the kids to run around while us adults could relax and talk and such.

Dallin spent a lot of time sleeping on Friday, and was so sleepy otherwise... but he perked up when we pulled out the Wii *grin*  Jack, being in his 4th year of residency has had plenty of pathophysiology so we discussed Dallins symptoms... he and Jami both agreed that Dallin looked awful and certainly didn't act well.  We stayed up late and made plans for the long weekend.  Jack and Jami were going to go to the San Diego Temple Saturday early morning while Nathan and I stayed home with the kids, then we'd swap... afterwards we'd all go to the beach.  Saturday morning came around and Jack couldn't find his dress clothes, so Nathan and I went early(ish)  The San Diego temple was absolutely breathtaking- so different architecturally from any other temple I've been in, but the same spirit and gospel truths as all.  When we got back, it was after 11.  Dallin was still sleeping- Jack said he'd gone up several times while we were gone to check on him, but he didn't want to get up.

Thinking that some warm sunshine and breakfast would help, and since he was so hard to wake up, I carried Dallin downstairs and outside to eat breakfast- he wouldn't eat- he was barely awake.  He was so lethargic and pale- he was crying because he was so miserable and just wanted to go back to bed.  So I carried him back upstairs for a while.  Nathan and I stewed with what to do with him.  Honestly, he was borderline unresponsive.  We got him up again a bit later and got him dressed- all the while he cried and complained, again that his mouth hurt- Nathan, bewildered with that same complaint that was always benign upon examination looked in his mouth again... but this time, he soberly showed me that the gingiva/gums in Dallin's mouth were w.h.i.t.e.  No pink whatsoever.  We both knew he needed to go the hospital.  Seriously?  On vacation??

A quick google search later revealed that the nearest hospital was not only surprisingly near, but a childrens hospital as well!  We sent Jack and Jami to the beach with the other kids and Dallin, Hailee, Nathan and I took off for the hospital, hoping for answers.  He really was declining rapidly- he was looking and acting so much worse than when we'd left Spokane a day and a half before- and sleeping 22 hours out of the day.  On the way to the hospital, Dallin was asleep in his car seat and Nathan actually asked me to make sure he was breathing because honestly, he looked dead.

Nathan dropped me off at the ER entrance while he went to park- I carried Dallin in my arms, he seemed so lifeless as I waited 5 minutes for the woman in front of me to finish explaining to the triage nurse that her daughter was saying that her foot felt funny.  Puh-lease!  As I waited I saw several patients called back presumably for vitals signs only to have them return to the crowed waiting room a few minutes later.  When it was my turn at the check in desk, I explained that I'm a nurse, that my son has spherocytosis that he's almost unresponsive and that I would like his h&h checked because I thought he probably needed a blood transfusion.  That got the triage nurses attention.... he asked me to spell spherocytosis *ugh* then gave me a bunch of paperwork to fill out... I wasn't even through writing down our address when we were called back- and we never saw that waiting room again- fast tracked into the ER for sure...