Happy (Belated) Thanksgiving!

I hope that everyone had a wonderful Thanksgiving!   I haven't been on my computer.  I have been so busy!!!  It's good.  :)  We are thankful for so much!  We are blessed in many, many ways.

I thank God daily for letting me take care of such wonderful children.  I realize that, as parents, we all feel that our children are the best, but mine never get in trouble (really!), they are polite and considerate, and truly loving.  My oldest is an incredibly talented artist & singer.  People are drawn to her, when she's drawing especially.  She is very, very gifted.  My son is very cute & sweet.  He's a complicated little guy, but he's very good and he's the type that will stand up and support those that need it. I feel that he was made to help my Emily.  He is her rock, and he needs her too.  And Emily...  She makes people become better people.  They see this small, sick little girl that can't always walk so well, bloated up still on Prednisone to a size that anyone who hasn't seen her in a while wouldn't recognize, with fingers that look like grapes ready to burst at any second, but who is filled with so much love, hope, wisdom, and knowledge.  She relies on other people to help her with things like her backpack some days, with stairs when she's feeling up to it, or just having a buddy to ride the elevator with on the bad days.  But she is filled with such hope, and she's actually pretty happy.  She's been stuck with this crap lot in life, and she gets through it by looking at sunflowers and sunshine, and with a lot of love.  She isn't bitter, and she isn't angry.  Most of the time she doesn't complain, either.  And I wonder (a LOT) how we were blessed with this child.  Us!  Surely we are not worthy!  And yet, here we are.  When our family was falling apart, she brought us all together.  When we worried about material things, she made us realize that those things don't matter.  She has made us see that we can get through anything together.  Her situation has taught my children we will go to the ends of the Earth to help them.  They know that we are there for them.  Her situation has also given us unique opportunities to help people in different ways.  Never on a grand scale, but I believe often it's the little things.  :)  That is why I stop to smell the roses, smile up into the wind blowing on my face on a sunny day like today, and why I smile up into the rain when it's drizzling.  We have all learned to appreciate the little things.  Butterflies, rainbows, mountains, valleys, trees... God's gifts to us.

 

 Those on my Facebook will have read the rest, but I had to share this with the rest of the world.  We found an article online today, but because I don't feel comfortable giving away our school's name and our exact location on here, I am not posting it.  I need to protect my beans <3  Last week, I wrote this on my Facebook status:  (edited a bit)

 

"I have many friends that have had repeated problems with their schools. So many that it almost seemed like we were one of the rare families that had a great school. I have been a big cheerleader for them because of how much thought and care they put into Emily's well being. More than is likely typical. When they consider classroom placement, they consider what other kids will be in the class to make sure someone will be helping her. They made snowmen rice socks last year  in her class because she uses rice socks to heat up her hands.  (Pop it in the microwave for a minute or so and you have your own heating pad!) They created a system of rice socks around the school since FL schools have outdoor hallways. Em's Raynaud's was BAD for a long time, and she had a terrible time with the cold, so they placed them where she may need one as long as there was a microwave nearby.  Last year, she was 42 lbs on October 13th when she was admitted to the hospital.  When she went back to school in November she was 75 lbs.  Her teacher bought her several new shirts, and her school therapist bought her a few outfits, too.  When her port was placed, someone sent my son home a gift card to WalMart.  Her kindergarten teacher helped the IEP process so much. She came up with a long list of physical needs that made it into her IEP. She loved her and carried her around the school. We couldn't describe how grateful we are to her for all of the love & care she showed to Em while she struggled the most.

Last week, a group of All Pro Dad's, school families that adore my kids, school staff, the school superintendant, & other volunteers came over my house and took care of a bunch of things that Kevin & I couldn't get to. When you spend so much time at the doctor's, staying home with sicks kids, running to the hospital (3 hours away) or weekly therapy as well as working (or in Kevin's case, being sick yourself), things get let go. This group of amazing people gave us a whole new yard, replaced my inside doors, put in a new microwave, put up the beautiful tile back splash in my kitchen that was my vision but I hadn't had the time to get put up, trimmed trees, removed trees, and painted my house. WOW, huh? We owe a LOT to a ton of people in the school. Home Depot donated $500 worth of merchandise, CVS donated cases of water for the volunteers, Publix donated a gift card, Bob Evans donated a holiday feast, & Ed Morse donated 2 free oil changes. Winn Dixie donated food for the volunteers.  Mr. C donated a birthday party :)  He has one of those blow-up bounce house businesses. My back yard will be ready for it now! Mr. G & his wife bought us a new grill. We are without words... just grateful and thankful. 

Almost every great thing that has happened to us has come on the heels of something horrible, and almost every blessing has come from the school. We are truly blessed." Thank you again to all of the volunteers- big and little. 

I stand in my kitchen now and just stare at it, thanking God for all of the times that He has helped us when we so desperately needed it.  I always pray for needs- never for wants.  And yet He provides.  How awesome is that???  I thought it was so cool that Em's friends came out to help.  What an awesome way to teach children about community.  

 

I was raised to believe that we help the schools.  It simply never occurred to us that it may be the other way around.  We don't ask for help.  I've given up trying to be a volunteer.  It seems like at least one of the kids is sick for every event, or something happens at the last minute and we can't go.  Heck, we don't even make concrete plans.  For anything.  A typical day for us is not the same as a typical day for others.  We never know what to expect.  Most people have the luxury of being blissfully ignorant to what it's like to have a sick child, or multiple sick children.  One of these days, I'll have to try to explain what that's like.  The short answer is that it's crazy, exciting (not always in a good way), scary, sad, beautiful, rewarding, fulfilling, blessed, and many other things.  One thing that it isn't?  It's never dull!!!

Thankful

Tonight at church we had a guest speaker.  This man also talked about all of these things, all of these blessings that have happened to him to go along with the not-so-great things.  It was cool because it gave me a better idea of some of the things that I need to do, and how to go about them.  His sermon was so relevant to me because my life has been going through so many of these roller-coaster changes, too.  Even my son gets nervous when things are good.

I don't want to embarrass anyone or make them angry by publicly calling them out on my page, so without naming people, let me say now that I know how loved we are.  I know that Jesus loves me, my family loves me/us, but I also know that my extended family loves us, too.  While I would give anything for my family members to not be sick, & I would trade anything to have my little girl healed, I know that there will always be wonderful things coming out of our struggles.  I've been saying that for years, but every day I see it a little more clearly.  We have learned to fight, to come alive.  We have learned to lean on each other instead of fighting and turning away.  I have learned to lean on God, trust in Him, and let go of my worries, knowing that He will take care of it.  We have become much more compassionate and understanding.  But all of that is only the beginning!

I see what an impact my CHILD has on people.  The strength, courage and determination of my little girl, all placed into a very sweet, smart, loving, trusting, happy little package, teaches people.  People are inspired by her!  I feel so blessed to have my children in my life, but to be able to watch a child change lives?  That's seriously blessed.  Adults notice.  Kids notice.  So many adults are quick to yell at the little ones, but not her.  She's like a very wise, old soul.  I have often said that our school is amazing!  They really, truly take care of her, and her brother, too.  I know that they are in the best place possible for them.  The last big act of kindness that I will be accepting comes from their school.  The group of All Pro Dads wanted to do a community service project.  They called Kevin & I while I was with Emily in the hospital.  I had thought that they would be going around mowing people's yards that didn't have time to do it, things like that.   Well..... not so much.  They are focusing on us.  (I really appreciate this.  The wonderful thing is that they have access to Emily's medical records, so they 100% know what she is going through.)  Yes, we are a mess.  We were never able to finish the details of our remodel in 2007 because of everything going wrong.  They are going to help out with a LOT of our needs.  Totally unexpected, but very needed.  I am not good at asking for help. Like, I don't even know how.  I pretty much don't do it.  But when it's offered, it's a huge relief.  That's how this is.  I told them that I don't really care what they do.  It's true- I trust that they'll do what they feel is right, and I'm so happy to have help that I don't care how it comes.  It's hard to believe how much we've come through in the past couple of years.  Personally, I'm actually very happy.  This is our normal.  We can juggle stress the way that many people juggle golf games or nail appointments.  We pretty much rock at dealing with stress now.  It gets so much easier as you go, especially when you learn to lean on God for comfort.  Hey, we're truly living!  We may have some really low, bad days, but our good days are amazing!  The ups make up for the downs.

We've also made some amazing friends.  We had so many people that I expected nothing from, whom I loved before anyway, that sent things, texted, called, dropped by, or messaged me on Facebook.  I didn't feel alone this time in the hospital.  Last year we really didn't know anyone, Emily was scared and uncomfortable.  This time, she was sad that she had to be there but once we moved to her normal hospital (ha!) she was happy.  I was so thrilled to have some of our other JA families also in the hospital.  It made it feel more like home.  And my heart swelled at how much love we have.   I "watched" through Facebook and heard some conversations about an amazing act of kindness that I am thrilled to have had a very miniscule part in.  This just shows how awesome these people are ;)  I am still in awe.

There is a girl in a hospital in TN.  Her parents were told that she would never make it to five years old.  Her fifth birthday was the first week of November.  Her parents had planned on having a grand vacation to Disney World in celebration, but instead they were seperated because her hospital was quite a way away from home.  I have lost track of how long they have been in there, but I believe at that point it was almost a month.  My amazing friends decided that if they couldn't get her to Disney, they would bring Disney to her.  This was pulled together and pulled off in about a week.  It's still hard to believe how much love and devotion went into this.  Almost as hard to believe as how it was done!  I wouldn't have had a clue where to start.  Everyone bands together, everyone wants to help.  How often do we find that now in today's society?  And yet, that is how life should be.  I am hopeful that perhaps now we can start to turn the tables and start giving back.  We have been so, so blessed!  How many people say that?

On a different note, Em is doing pretty well.  She's tired, but she's definitely getting better.  Her chest doesn't hurt, and the scar is looking much better now.  We're still worried, we still have to be cautious and vigilant, but she certainly seems to be improving.  She has been NSAID free for a month and a half or so now, and she seems to be doing ok with that.  If we can keep her off of those, that would be awesome!  She's had a couple of days where her wrists hurt, or ankles or knees, but it's not been too much.  We did increase her steroids for the week to try to squash the flare, but she's doing well with the decrease. 

As for me, I'm trying to get caught up with many different things now.  I haven't been online very often; I have barely had time to check my phone!  It's nice to get back into normal routines.  We're getting there  :)

Hooray for Home!

We had a long two weeks away.  We had from Friday to late Monday night at All Children's (ACH), and then from Tuesday to the following Friday at Shands.   ACH is a beautiful, brand new facility with an amazing view of the bay.  Oddly enough, Emily was so much happier when we got to Shands.  She felt much more comfortable and at home.  I was surprised at how much her mood changed.  They are more vigilant at Shands, we get much less sleep.  But they are a great team, and we really had some amazing people helping us out there.

The short story about why is this:  Em developed a staph infection at her port.  Since Emily is immune suppressed, the doctors were very worried.  ACH wanted to remove the port; Shands opted to keep the port and just make sure to knock out the infection.  She had 2 weeks on some very, very powerful antibiotics.  I learned a lot.  For one thing, they take blood and put it in special culture bottles.  If bacteria is to grow, they generally see it in 24-48 hours.  Then they take it and see what it responds to, and they keep checking it to see what kind it is.  They test it with a spectrum of antibiotics before deciding on which one to give.  ACH saw gram positive cocci growing in about 12 hours.  Fortunately for us, Emily had only one definitely positive culture through the whole 2 weeks.  She did have one that they believe was contaminated.  Of course, before they realized that it was contaminted they told us that she had a positive culture.  I've read enough stories about enough people to know that if you suddenly develop a new strain... it's not usually a good sign.  That was one of my 2 weaker days.  Thank the Lord it wasn't accurate!  Through the 2 weeks they had her on 4 different antibiotics.  At ACH ER they gave her Rocephin.  When they called us back they told us that Rocephin wouldn't work as well on her bacteria, so they started her on Vancomycin.  After a day or 2 they decided Oxycillin would work better.  When the contaminated culture came in, they added Vanco back in for 2 days.  At the end of the two days, they took both the Vanco & the Oxycillin away and traded out for Ancef (Cefazolin).  All of them were hard on her tummy.

The other problem we had was due to her IViG treatment.  This is generally an amazing drug.  They take the antibodies from the blood products of about 2,000 people, sterilize them and combine them.  This can fool the faulty immune system into thinking that these invader cells are ok, therefore making the system work more properly.  There are not all that many side effects associated in the grand scheme of things, but it can cause some wicked headaches.  Emily's was supposed to run over 8 hours to see how well she tolerated it.  Someone read the directions on the medicine instead of following the order and set it to drip for 4 hours.  Well, apparently it can also mimic aseptic Meningitis.  I read.  No, not fiction.  I read medical stuff.  I try to stay ahead of the game.  I am fascinated with the human body and what it can do, by bacteria and things of that nature.  I had read about Meningitis in the past.  I wondered once upon a time if my son had it.  When her head hurt badly about 24 hours after the infusion, I didn't put 2+2 together.  When her stomach was feeling yucky, I didn't think much.  After she vomited and her neck started to hurt just as badly, I panicked.  Thankfully, my new level of panic is still functional.  She was miserable.  The was the worst I had ever seen her.  I never want to see it again.  She couldn't lay down, couldn't sit up, couldn't bear noise or the smell of food.  She was in her bed moaning for just over a day, maybe two.  All of the days run together and you lose track quickly.  She was just starting to feel better when her tummy starting having an even worse time with her antibiotic.  It had hurt her stomach even at ACH.  By the end of so many days, it was starting to affect her liver a bit.  Since her liver enzymes were elevating, ID (Infectious Disease) panicked, and when consulting with the Rheumy, worried that it could be her Dermatomyositis flaring.  I knew it wasn't.  She hasn't really had pain in a while.  She is actually very strong right now!  Shockingly so.  Her rheumy's agree.  So, they changed her from the Oxy to the Ancef.  She vomited many more times on the Ancef.  Zofran wasn't cutting it.  Finally we found that Benadryl was helping.  A few doses of Benadryl helped her to be able to eat.  So she was miserable there!

We were very fortunate to have some amazing friends do some amazing things!  That will be a whole new post in itself.  Let me just say that I am truly in awe of the people that I have the honor of calling friend.  I can't believe that I have these amazing people in my life.  I'm sure they don't realize how much I appreciate them, but it is likely a LOT more than they realize!  While I hate to know of anyone hanging out in the hospital for any reason, we had some of our favorite people around us the last 2 weeks.  It helped to make the week go by so much more quickly.  I also learned that as long as I have a little sleep, a morning shower & a Mountain Dew, I can get through anything.  Poor little bean probably can't say the same thing, but she sure makes me stronger.

We have to be very vigilant for a while now.  They warned me that usually they put immune suppressed patients with staph infections on a 4-6 week course of IV antibiotics.  Because hers cleared so quickly and she was at the end of a medicine cycle, they felt comfortable giving her the 2 week cycle.  We need to be on the lookout for chest pain, fever, redness, etc.  It is worrisome.  I am comforted by the fact that we will be back there next month.  And this time when we go I can have my son treated.  I have now had two doctors look at him and agree that there is a need.  Both of them have told me to just page them when we're in clinic for her meds.  There is simply too much of his body to cover with steroid creams.  They say no more than 5% should be treated topically, and we're definitely above that.  I'm so glad that my rheumy's will help him.  I feel better knowing that.  Hopefully we'll be able to bring him this time! 

There will be more to come tomorrow or the following day.  I have so much to catch up on!  One last thing for the night.....

If you're looking for some new artwork, crafty items, or just looking to support a great cause, check out The 1st Annual Autoimmune Arthritis Online Auction  November 26th-30th, 2011.  I love this new non-profit, and they are well on the way to doing some amazing things!

Day 5 in the hospital

To recap, I took Emily to the ER on Friday night. They ran cultures, sent us home early Saturday morning, then called us back Saturday afternoon.

Well, this sure wasn't what we were expecting. We were transferred to the hospital that placed the port, where our Rheumy is. We had several appointments on the agenda for today, but they all went out the window. My son was to have a new patient appointment with our Rheumy, Emily was supposed to have her IV meds and an appointment with a gastro doctor. Instead they transported her via ambulance while I took our van so that I would have a way back home. We got here very early in the morning. We saw an attending doc last night who is trying to coordinate everything. Today her Rheumy came to update us. They started her on IViG to help boost her immune system. They are doing their own cultures here and debating what to do with her port. The surgeon & the gastro doc are supposed to come see her. The surgeon and infectious disease departments will confer next. They say that her type of staph is generally very responsive to antibiotics, so they may just continue the strong antibiotics and leave the port alone. Either way there is a risk. I would prefer not having to put her through two more surgeries.

And so we wait. Wait to find out the plan, wait on her immune suppressing meds that keep her pain, stiffness, and joint destruction under control. Wait to go home and back to my wonderful hubby and children. On the bright side she's actually pretty happy. She's been in a great mood, silly and all.

We would appreciate all of the prayers that we can get. She's acting so great that it's easy to forget how sick she really is.

Edited to update that the nurse just informed me that there is blood in her stool. I had told the docs that a couple of months ago, but we thought increasing her stomach med would help. Guess not. Hopefully GI will come tomorrow.

Hospital Update

While I still don't have a lot of details, this is what I know so far.  They were planning on keeping her for several more days until I explained the situation. Now that they all know and understand why we are headed to Shands on Wednesday, they are shooting to release her tomorrow.  She will be sent home with an IV and antibiotics. They will train me how to work the IV!  That's all that I know so far.  I still need to find out exactly what type of bacteria this was. I know that they finally pinpointed that.  They changed her antibiotic to Oxacillin because this strain is weak to it.  That's about the extent of my knowledge right now.

Emily's hanging in, but she was really, really hoping to go home today.  She's a bit sad that we're still here. We took a quick trip to the gift shop, but she was tired shortly after we got there.  Our big activity- filled morning went south pretty quickly.  That's ok.  I'd rather she focus on rest, anyway.   We found out that we can do laundry here at the Ronald McDonald house, and use their computers!  (Thank you!)  We can also visit the hospital library, but the latest they are open is 6:30. RMDH is only available here until 4 unless you have a room downstairs with them.  I'm so happy they are here!  I'll have to buy them a new keyboard for this computer. The space bar only works when it wants to!

So with luck we'll be home tomorrow, pack a bag and head off to Shands.  UGH!!!  Who'd have thought???

October is hospital month for us...

While the little miss is busy painting, I have taken over her internet!


So, she still doesn't really have a good grasp on when it's important to speak up when it comes to her body.  She's gotten much, much better, mind you.  However, now she's gone to the opposite extreme of telling us about a tiny pain that is there and gone in the blink of an eye, but she doesn't really express when that little pain turns into something bigger.  We knew that her chest was a little uncomfortable from her port placement, but we didn't realize that there was more to it until Wednesday.  Apparently, she didn't feel like telling her daddy on Tuesday.  She told me on Wednesday, so I called the surgeon and her pedi.  We made an appointment for Thursday since her pedi is only open for 3 hours on Wednesday's.

Our pedi appointment went well.  The nurse at the surgeon's office had told me that they would likely want to access and flush the port, take labs and xrays.  Our pedi said that she wanted to be really aggressive.  She prescribed Augmentin as an antibiotic and a strong antibiotic cream.  She also requested that we take a cup of water and two tablespoons of bleach (yes- Clorox!) to wash the area with to kill the bacteria.  So we did.

The next day her chest hurt still, but it was in a different area.  She waited until I got home from work to tell me this, after a full day of school.  (GRRRRR!)  So, knowing that this would mean a trip to the ER, I called her pedi.  We agreed that it would, indeed, be the right decision to take her to the ER.  I had planned on using the one by my work because they did have a pediatric floor, but our doc suggested we make the drive to an actual children's hospital.  So off we went.

We spent the majority of Friday evening in the ER.  They sent us home around 5:30 A.M. after taking cultures, finding out that her blood work was normal, and after a round of IV antibiotics.  We got home and crashed hard!  The night had been long and frustrating.  The worst of it was when they had to access the port for the first time.  We were prepared for her to have a hard time emotionally, but since the area around the port was infected, it was harder.

At home she slept in until 3 P.M.!!!  Obviously, she was quite tired and worn out from the night in the ER.  After she woke up my phone rang.  It was the hospital calling to say that they found "Gram Positive Cocci" growing in her culture.  After a quick Google search I found that it's a class of bacteria that includes staph and strep.  Not very surprising.  It also turned out that the antibiotic they had given her in the ER was more for meningitis and not meant for staph or strep, so they wanted us to come back to the ER.

Once we got here we realized that no one really knew what to do with us!  Someone had dropped the ball and forgotten to write notes.  We were told downstairs that they weren't 100% sure we were staying.  I knew.  You can call it crazy, psychic, coincidence or whatever else you like, but I know things, and I knew that we would be staying.  Just like I knew that we would be the ones to develop a crisis like this.  That's how we roll.

We talked to the doctor for a few minutes before he decided to keep her.  Naturally, part of his reasoning is because of her being immune suppressed.  In a child with no other issues they would probably have sent them packing, but that could be a mistake with dire consequences in an immune suppressed child.  So, they got us a room upstairs.  Because nothing is ever normal for us, they told us the wrong room number.  The transport lady, a worker from Child Life, Emily & I all went to the right room on the wrong floor.  It even said "Hi, Emily!" on her TV screen.  There was no bed in the room and no name on the door.  They finally found out where we were supposed to go!  Up to the 8th floor, in a room with an amazing view of the city and the bay!

So far, we're pretty much just chillin'.  The worst part of her stay so far has been accessing the port for the second time (still with an infection lingering) and drawing blood out of her arm.  She was so, so upset about that, but their reasoning was very logical.  They needed to gather more blood for more cultures from the port to see if it was a fluke, but they also needed to get a peripheral to see if the bacteria had spread to the rest of her body.  Makes sense, right?

The cultures take 24-48 hours to come back, but apparently on a weekend there isn't really much of an interest when it's not a huge rush.  That's fine.  Aside from missing Daddy & her siblings, it truly hasn't been a bad stay.  Hey, there's TV, movies, internet, room service, a great view, and quiet (yeah- in the hospital!)  We've been told not to expect the quiet to last until tomorrow.  For now it's been nice.  They say that tomorrow there will be a ton of residents all wandering around the floor, med students, and other staff.

So we pretty much just have to wait for the cultures to come back and stay on antibiotics.  (Just her, not me!)  They said that once they find out what type of bacteria had grown on the first culture they'll have a better idea of exactly which antibiotic to use.  Hopefully after finding that out we'll be able to go home!  I know that this is the best place for her to be. She knows that, too.  She told me this morning that this must be a good idea because her pain went from being between a 6-7 to a 1 on the scale from 1-10.  Thank God this time she's used to hospital life.  Last October when we stayed at Shands, it was truly hell.  Neither of us could wait to go home, we were so far away from home, and she was so scared.  At least this time she is familiar with the routine, and the port makes her even more brave than we already know she is.

Oh!  And one last note:  The Child Life worker that escorted us up here is awesome!  She came back to help them access her port yesterday, then back again to draw the peripherals.  She promised to visit today, and she did!  Not only did she come visit, but she left Em to nap and came back with a Taylor Swift Barbie doll!  She also brought some Halloween stuff for her to paint, so she's had a busy night.  Everyone here has been fantastic (minus one phlebotomist), but this lady has just been amazing.  Hopefully tomorrow there will be more to do.  Nothing is open on the weekends, but tomorrow the gift shop & library will be open.  I can't wait to get her out a little bit!  Hopefully we'll be back out tomorrow.  We have an early appointment at Shands on Wednesday for her meds, a GI appointment for her in the afternoon and a new patient appointment for my son with our rheumy.  Wish us luck!  And prayers would be wonderful for a quick recovery and all of the bacteria to be GONE.  Thank you all!  With love from ACH <3

Family Camp Was Amazing!

This past weekend we went to our local "Hole- In- The- Wall- Camp".  These are the camps that Paul Newman's product lines help to support.  These camps are amazing in so many ways.  To start, they are tailored to sick children.  These people realize that it's not fair or fun to live in pain every day, to have to spend so much time at the hospital or doctor's offices, and have to go through frequent testing.  They also realize that many of these kids are on so many meds that they couldn't go to a "regular" camp.   These types of camps are filled with counselors that volunteer- because they want to.  They are medical students, nurses, doctors.  They also have a disease-specific doctor on hand because you just never know what may happen.  It's a safe haven, filled with love.  To have a family weekend is amazing!  Emily had gone to this camp twice for a week each time.  She was so sad to leave it!  She looked forward to this opportunity to share it with us.

It's also a wonderful experience to get together with other people that are going through similar situations.  You really feel a strong sense of community.  They want the parents to do their own thing to recharge.  Many of us are happiest just watching our kids have fun  :)  I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc.  It was really cool watching Emily do all of the chants and the little cheers they had.  Like she totally belonged.  That was cool.  Another "Mom Moment" happened during the opening campfire.  One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people.  (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.)  For whatever reason, Emily was one of those 3 special people.  I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did.  I suppose she could have remembered her from last summer, but Em looks so different.  Any which way, it was truly amazing, and really touching.  Em also really enjoyed being in a bed right next to my bed  :)  Sleeping only 3 feet away from Mom makes her feel safe.  <3  She did have a food meltdown on the first night, but otherwise she had an amazing weekend. 

The family "Pals" are volunteers that follow the kids around.  They specialize in making the kids feel loved and happy.  They bond with the family, but especially the kids.  They have them "serve" the family, hold open doors- totally spoil the family.  We had 3 pals.  Our pal, Brittany, has Lupus.  She told us that she refused to take her Prednisone, which caused kidney failure.  She spent half of her time with us, and half in the arts and crafts area.  She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair.  Our other pals were pushing her around. I think it was a blessing having her.  She could understand better than the other two how Emily felt.  She was a camp kid, volunteering because she loved the camp and the way it made her feel.  Our pal Jake was in school working on dual masters in business & sports.  He & Zach got along very well  :)  Our last pal was Stephanie.  She was my favorite  :)  She was only 21... close to Gir's age.  She's a medical student, working her way through college in a lab that's doing research testing for Lupus.  I was so excited to hear that!!!  She was down to Earth like a good teenager, able to fit in with the kids like she was 16.  Not only did she and Gir get along well, but she & Emily did, too.  Em schooled her in rheumatology.  I think they impressed each other.  It was lovely to meet them all, and a wonderful treat getting to know them.  Many special people make up this camp!

My last bit for the evening...  Well, we're finally on the way to getting my son "figured out".   I had noticed a while ago that his hands look puffy.  While at camp, another mom said the same thing.  (Thank you again for saying it!!!  I never would have thought to jump on it otherwise.)  After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone.  So I thought, hmmm, she's here in a professional capacity, volunteering her time.  It couldn't hurt to ask her to look him over, could it?  She was totally cool about it.  She said that he's hypermobile, to start with.  And she said that, judging by his reaction, she believes he has arthritis in his finger.  She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him.  I had his blood drawn yesterday for labwork.  I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA.  (Is that wrong?)  Hopefully those will be back in the next few days.  Those should tell us if there's anything going on, though not necessarily.  I requested the lab send a copy to the rheumy.  That should help to get things started.  I really, really hope we're wrong.  I really want to be.  We shall see.  We're just taking it all one day at a time.