Sunday, November 27, 2011

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!!!

Thursday, November 17, 2011


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  :)

Sunday, November 6, 2011

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!