Saturday, June 26, 2010

She's home!

We picked Emily up from camp at noon.  We opted to let her take the bus that the Arthritis Foundation offered for the ride home.  The bus went from the camp to All Children's Hospital.  I'm such an emotional wreck at times!!!  I hate that I cry for everything.  I was sobbing like a fool when she got off of that bus.  There was someone that I wanted to talk to & someone else that I wanted to me, & I could barely talk.  Dern, I missed that girl.  I love all of my children equally, but differently & when you have one that needs you more than the others...  I'm just glad that she's home.  Now we get to prepare for our trip to the Juvenile Arthritis Conference! 

Just in case there's any doubt... the Arthritis Foundation seriously rocks.  They are awesome and amazing.  I'm already trying to think of ways to do much more fundraising this year.  Last year we did so well due to Kevin's office.  This year was pretty bad.  Aside from myself we only had 3 other donors.   Not only is the AF sending us to the JA conference, but they also help to support the camp.  I could never send my little girl to a regular camp.  There is no doctor on staff, no one qualified to give injections.  These kids feel different.  Em hates to feel different.  She has no one around that is going through anything similar, no one that understands completely, & feels like she does.  That is another reason that her camp is amazing.  I believe there are ten beds in a cabin... each filled with children like her.  These kids can be kids without worrying about what other kids think of them, they can discuss how they deal with things and learn from each other.  Of course, the heated pool, archery, horseback riding, boating, rock wall climbing, arts & crafts and other stuff help, too. 

Here's a thought.  The more time that you spend around places like the children's hospital's & such the more you see things.  I always wondered how much money they spent on the little toys and dolls that they had at the hospital & clinics.  Last year at camp we were told that each child gets a quilt & a stuffed bear that are made by volunteers.  Come to find out, the same volunteers do the same things for the hospitals.  For the boys it's The Toymakers. They make those cute little wooden cars & such.  They're a group of retired men that got bored & wanted to help out in their communities.  God bless those men & women!  If you've never had a child that has suffered through any trauma to receive a gift like this...  It really touches your heart.  It helps them get through the trauma easier, & it can make you feel so blessed. The secret to happiness is in the little things!!!

Friday, June 25, 2010

Last night away from home

My little one will be home tomorrow!  I can't wait!  Her doctor's office called again today.  The nurse was going to find out for sure if I need to hold on her meds until our next appointment, but I haven't gotten the call back so I assume that's a yes.  I found out that last week her ANC was a 2.5, and this week it was a 2.0.  That would be why they were panicking.  *sigh*  She can't catch a break.  Somehow she hasn't gotten sick yet, or hasn't given anyone any idea that she's sick.  Guess I'll find out tomorrow.  I'll let ya know :)

Thursday, June 24, 2010

A low ANC is a great way to scare your medical staff

The rheumy's office called me several times on Monday and again today due to her white cell counts.  They should be between 4.27-11.40.  I'm not 100% sure exactly what hers are, but the camp nurse said it's around 2.  She's not sick, she's having a great time from what I've been told.  They were supposed to get back to me on what was happening with her treatment plan this week but I still know nothing.  I know that the camp nurse said she still hadn't sent an email that she was trying to send since 8 A.M., & this could wait so I don't fault her.  I just hope that I know something of what to do before she gets home.  Now I'm not sure if I will need to hold her Methotrexate on Monday or not.  I'd rather not.  I realize that having such a low immune system isn't that great, but I truly believe that it's the injectable MTX that's turn her fingers back to almost fingers instead of little fat sausages.  Not to mention that she finally has a bit of fatty tissue on her arms again.  That makes it so much easier to inject her.

Oh, & I got our conference registration confirmation & our room confirmation!  I'm so excited!!!!!  This is like a dream come true for me.  I have spent so many hours researching arthritis, scleroderma, Raynaud's, related matters, & also reading boards, trying to help others.  And they make it fun & educational for the kids.  Who could ask for more?  Not me.  Just over a month to go... :)

Wednesday, June 23, 2010

Fast camp update

I called the camp tonight to check up on Emily since they were going to run labs and take some form of action.  Her ANC (white count) was still down.  Instead of moving ahead with either her Enbrel, Prednisone or Salumeterol they opted to wait until her normal rheumy & his nurse, Norma, come back from a conference.  They are due back in their office tomorrow.  (Norma is AWESOME, btw.)  Hopefully by tomorrow night we will have some sort of an answer. 

They said that she's eating well, but mostly just peanut butter & jelly.  That girl is so amazing, & yet so picky!!!  It is lonely without her.  I'll update more tomorrow once I find out some info.  Until then....

Tuesday, June 22, 2010

So quiet

It's so weird here without Emily.  Yes, Zachary does talk a lot, & Ashley often does, too, but I think that everyone is feeling just off a bit with her gone.  Tomorrow afternoon I will call the camp and find out how things went at the clinic, how her ANC was, & if she got her Enbrel or Prednisone or maybe the Salumetrol?   I feel horrible that I won't be there to hold her for any of it, but I know she's in good hands.  She's amazing. 

I pour so much love into that girl.  I spend so much time researching her diseases & meds, & advocating in different ways.  I'm always thinking about which med we need to do today, or on rare occasions which one we forgot yesterday!  There's a hole in my heart when she's not here, & I find myself still thinking of the same things.  I am absolutely sure that she is having the time of her life and she will be fine!  But that doesn't stop me from missing her like crazy.  Only a few more days...

Monday, June 21, 2010

'Cuz that's how we roll

Sometimes I wonder if there will ever be a time when our mere presence does not cause chaos.  We drove Emily to Camp Boggy Creek today.  It's about 3.5 hours away from home.  Naturally, I started to get a migraine in my eye just after leaving.  Of course I was driving.  We got forty minutes away from camp when we got a call from her rheumy's office.  The labs that we had drawn Monday and finished on Friday (because they couldn't get enough out of 4 veins on Monday) showed low white counts.  I knew that it would happen, and I even asked the doctor at our last visit if we could just ignore that next time.  She is only on a .2 dose of Methotrexate, and yet it plays havoc with her labs.  I don't want to skip anything right now because her hands are FINALLY looking better.  (I can see knuckles!)  Not just that but she finally has fatty tissue on her arm again.  That's all because of switching back to the injectable MTX.  Fortunately, we had just given her this weeks dose before we left the house this morning, but that news sent them all into a scramble.  The nurse wasn't sure that it would be good to give her Wednesday's dose of Enbrel since she's at camp and she can get sick.  Her white counts only dropped one point, mind you, & low counts run on my side of the family.  Of course our rheumy is on vacation this week, so she's calling the on-call doc that doesn't know Em's history.  They decided to skip the next Enbrel dose, but then said they would talk to the camp on-call to see what she thought.  We got pulled out of line, whisked into the clinic, and had an exam by the doctor within our first ten minutes there!  They told Emily to wear a face mask until she got into her cabin to try to stay germ-free.

We met Dr. Modica today!  I have heard such great things about Dr. Modica, I'd heard how she's more on the aggressive side of treatments, how cool and caring she is.  Right away I felt so comfortable with her.  She was awesome!!!  She asked if we would mind her examining Em, and she asked me MY opinion on skipping the Enbrel. (Dr. N does that, too, but many doctor's don't care.)   She suggested they draw labs on Wednesday before giving her the injection, and said that if her ANC was too low they could do a quick Salumetrol (steroid) IV.  I really appreciated that because of the issues that we've had with her flaring up since April.  Dr. M checked her wrists and said she's not under good control.  She showed us why & it absolutely made sense.  When she starts to pull her wrists down she moves out her elbows to compensate.  She said that she would have her on Remicade, which is what I assumed Dr. N would put her on.  When I asked Dr. N about it he said that it wasn't approved for her.   Last but not least she had a conversation with Emily.  I really appreciate when people treat my little people as people.  Especially Emily.  She has been through so much, she's handled it all so well, & I tell her 98% of the time what is happening.  She explained to Emily what white cells were & why they were important.    I left there feeling really happy that she was in control.  She called me about an hour later as we were getting ready to leave.  She had called the doctor on call to make sure that he was cool with her plan.  These are old school doctor's down here.  He told her that he'd rather only give her a little prednisone.  Seriously???  Salumetrol is a better, more effective steroid.  I admitted that I was a little sad about that, & she said she was, too.  But she also said that she'll take a look at her ANC on Wednesday & go from there, & she'll call me & let me know.  They will all be monitoring her for signs of infection 'cuz she won't tell anyone.  She can't tell the difference between sick & well unless it's really bad like strep or a sinus infection.  Otherwise she doesn't know the difference between H1N1 & just another day.  She doesn't talk about flare ups either, unless she has a "beeping" (throbbing) pain, or if it's severe, like when she can't walk.  It makes me so angry that this is how it has to be, going from medication to medication, hoping that there will be something new to take after her current meds stop working.  Wondering if we'll run out of options someday.  I know that God has a plan, His plan is perfect, & He is in control.  I know that things will not generally go as I would like them to, & I mostly accept that.  I just wish that it didn't involve daily pain for my baby.  She exudes tension.  Just touching her back makes you want to just massage her because she's so tense.  And she's only 8.  He must love her an awful lot to put her through this, but I've known the answer to that for a long time.  She's a gift.

Saturday, June 19, 2010

Last day of Scout Camp 2010

Today was bittersweet.  We all had a hard time waking up, and getting going.  The heat has been so intense here this week, and the humidity has been high.  Usually this time of year I just don't want to go outside at all unless I'm at the beach because it's suffocatingly hot.  Even I was surprised that I agreed to do this because of that, but I can usually tough things out even if only out of stubborn stupidity!  I arrived to see one of my kids already being carted off to the office tent.  He & his best friend had gotten into a fight.  They broke my heart, both of them looking so sad and lonely.  One kept crying on & off in an "I lost my best friend" kind of way for about the first 2 hours.  He finally snapped out of it just before the rains came.  I knew that he was also just tired. I could tell by the way that he acted all morning.  It's a shame that our society is the way it is, that you can't just reach out & hug someone when you know they need it.  It's sad that we have to be so removed, so cold.  As a mom who has always loved kids it's just a natural instinct for me.  All of my kids have needed a hug at some point through the week.  Maybe it was good that the rain came when it did.  There was a bit of confusion for a while, but eventually we all moved to the larger shelter with our lunch & awaited further instruction.  By noon they had decided that everything for the rest of the day was canceled.  The kids were supposed to get fishing licenses, shooting range certificates (I think), awards, patches & belt loops tonight in a ceremony where they would perform their skits in front of everyone's families.  There were some cool activities that the kids had to miss out on today, too.  I was happy to be able to come home early to nap, but I was sad that the kids couldn't get every ounce of the experience.  They'll still get their advancements & such, but it would have been more fun outside with family instead of at the pack meeting.  I know I'll see them at meetings and such but I'm going to miss them.  I won't see Little N at meetings.  I can only pray that things will change for him and he will find people that really love him & want to take care of him.  I didn't have a chance to say goodbye to him.  Everything went crazy for a while there.  Maybe I'll have the same kids next year :)

The original plan was for Kevin to take Emily to her repeat lab draw today & then shoot to his doctor appointment, but since we got out so early I took her.  I knew that I was in for a rough time because the last episode was still fresh in her mind and on both arms and wrists.  I tried to pump as much water into her as I could, but she just really didn't want to go.  For once, I just didn't have any patience.  I usually can be so calm & relaxed for her when we go, but today when she went under the table to hide & wouldn't come out I just didn't have the tolerance for a fight.  Fortunately she knew that, and she's so good anyway that she doesn't like to be a brat.  She came out quickly.  It still was a little rough, but they got the full vial this time!  And it didn't hurt her!  She still looked like a wreck when we left but she calmed down pretty quickly.   In the next day or 2 we'll have to try to hit up the beach.  Before the oil reaches our beaches and we can't go :(  They do say that we may never get any, but I'll not take the chance & miss out!  Have a great night, ya'll! 

Thursday, June 17, 2010

Scout camp day 4

Today was a pretty good day.  Our camp mornings are rough, but after the first move we're ok.  When I first get there it's rough trying to get my kids checked in, get their stuff situated, get our den cooler, get their buckets, get the buckets opened, answer everyone's questions, and try to give everyone personal attention because they all want to tell me all about their nights &/or mornings.  Our first move today we got yelled at for not getting them to where they were supposed to be on time.  I'm not generally one to stand up for myself around people that I don't know, but for something that I took a vacation to volunteer for we sure got yelled at a lot.  I told her hey, it's not like we're not trying.  We explained that they have made the first move less than easy.  I've never had to get 8 boys- especially several with issues- into a line like this.  My children are so well behaved that everyone wants to take them home.  That's what I'm used to.  I don't do that with an iron fist.  I would rather treat them like people, not yell and scream, give them options, explain things, and let them know that one wrong move does not a "bad" child make.  I don't believe that there are bad kids unless they are made that way.  I don't think they start bad.  I've never told my kids that they are bad.  I make it a point that if they've done a bad thing it can usually be corrected.  Anyway, that in mind it does take a bit to get the den kids ready to listen in the morning and lined up as they should be.  Once we've moved out though they're pretty good.  One of them thanked me yesterday for being their leader, and today gave me a swap-it.  He and another boy will hang back and walk with me since I hold up the rear of the line.  Tomorrow Helen won't be there, so I'll probably have to move to the front.  I'm hoping that little N will be ok without my frequent attention.  Little N had another great day today!  I'm even happier that he's happy & smiling there now after hearing some disturbing news about how his grandparents treat him & his brothers.  There are 5 boys total in their home with the littlest being twins.  Apparently their grandparents don't want them at all and aren't ashamed to let it be known to them.  I wish to God that I could do something about that, that I could keep him under my wing so to speak.  He was so happy today, & all that it's taken has been kindness, love, compassion, and caring.  Is that really so much to give???  I wouldn't think so.  I'll never understand how people can be so cruel to children.  Just listening to my little people cracks us up.  Listening to the den's boys has been wonderful, too.  These guys are so funny, they have so much to say.  They just want to be heard.  One of them is obsessed with heat shrink tubing.  How great is that?  Rules are important, but kids want to feel like people, too.   

The only other issue today was Raynaud's.  I'm so used to that happening that unless it's severe it doesn't really phase me much.  I got a frantic wave asking me to run to the first aid tent because my Emily was cold.  She hadn't turned purple, but her hands were turning white.  I warn everyone because I know that it sure freaked us out at first, so they knew sort of what to look for.  Usually Em doesn't say anything until she's purple, but today she told her leader that she was cold when her hands were white.  Her leader wrapped her in 2 towels and a blanket, scooped her up and carried her holding her close to her.  She did such a great job!  It didn't take long for Em to get warmed up and she was back to playing.  Pretty much normal course for us, but it's usually terrifying for those that aren't used to it.  And that's about the day.  Tomorrow is the final day, with an awards ceremony later in the evening.  It should be interesting!  The boys get to perform their skits.  Wish them luck!  :)

Wednesday, June 16, 2010


Not only was today a great day but I also got some great news!  I'll start with that :)

When Emily was first diagnosed with JRA the Arthritis Foundation was starting to talk about the Juvenile Arthritis Conference in Texas.  I knew at that point there was just no way.  She was still in too much pain to really go anywhere.  By the time last year's came around we'd already accrued enough medical bills to not be able to do much of anything so I knew it wouldn't happen.  This year I applied for the scholarship.  I felt that it was about time that we go, but between the continued medical bills and now with Kevin out of work I figured there was no other way.  Sooooo I got our acceptance email a little while ago!!!!  I'm so excited!!!!!  The conference is a great way for the kids to connect, to learn about their conditions.  There are also parent classes and sibling classes, along with crafts & activities for the kids.  I can't wait!

At camp today, the day started off rough.  Emily had a really rough morning.  She had a hard time getting up, and she actually accepted Motrin.  As the day progressed she got better.  By afternoon she was tired, but still going strong otherwise.  I had to help her change, but I figured she'd have a hard time with that with wet clothes.  As for my group...  My co-leader, Helen was nice enough to bring in numbers for the kids to pick since we've had issues getting them from point A to point B in a timely fashion.  My thinking was that with numbers they couldn't argue about their place in line, and we'd be better able to remember whose turn it was to hold the flag.  Well, Helen thought we could take them around in 2 lines.  It took us about 25 minutes to get moving, the kids complained about their numbers, and then my little special friend whom I'll call N *ate his number!!!*   I'm not sure if I've mentioned yet at any point here that before Emily was diagnosed with arthritis she was diagnosed with a form of autism called Pervasive Development Disorder.  She had some pretty huge issues, and a lot of our time was spent trying to figure it all out.  I swear, right now I'm feeling so blessed that we had that experience.  I really feel that it has prepared me for this week.  I have so much more patience with kids now than I had before.  I learned different ways to handle unusual behavior.  Well, anyway, after we finally got to where we were ready to move in her 2 line formation we were late for the first activity, and we didn't even make it there before we had a fight in the line.  We sent those 2 up for a time-out and the rest of us were on the way.  That was the last time of the day that I had to really raise my voice today.  We went back to my idea of the one line with everyone lined up by their numbers & all went well.  In fact, I had several times where my little N smiled so big, laughed, joked around and naturally fit in.  We got him active in a game similar to tag, we got him to take a role in our skit that we're working on for the awards on Friday, and he participated in our flag ceremony!  One of my other boys came up to me and thanked me for being their leader.  I was so proud of them all today.  I couldn't stop smiling.  Yeah, I'm exhausted.  But really this has been a great time.  I think I may even be crazy enough to do this again next year ;)  Keep me in your prayers for tomorrow please!  Please pray that my kids will all have fun, listen well, and work better as a team.  I really want them to just be happy!  Time to crash.  G'night!

I survived Scout Camp Day 2

Have I mentioned recently how wonderful my own children are?  I tell them that all of the time anyway, but compared to some other kids they are just amazing.  I've always figured that they were better than most by other people's reactions to them.  I've always heard "Oh, your ______ is so sweet!  Can we take him/her home?"  We hear that a lot.  Out of my campers, I have one that's definite ADHD, one with a bad family life and autism to boot, and a bunch of kids that have known each other long enough to get on each others nerves quickly.  They are all good kids, but they spend a lot of time fighting against each other instead of with each other.  I'm sure that this is no surprise to anybody that spends a lot of time with a lot of kids, like a teacher or teacher's aide.  But to someone that has 3 wonderful kids that rarely get into trouble and doesn't have a whole lot of time logged with other kids in the last 20 years or so... this was a bit overwhelming.  Our little autistic boy decided that it was too hot, too early, and he wanted to go home.  Have I mentioned he's very smart?  I took him to the office area after he spent about 20 minutes crying how homesick he was, & I thought he left, but apparently they have a deal worked with his family.  He joined us for lunch, but he was sad and angry that he was still there.  When I asked him if he would please try to have fun and join us he started to loosen up a bit.  I'm not sure what happened next but something set him off.  Next thing I knew he was swinging his bucket up in the air and it damn near knocked out 2 of the kids next to him.  Just before that I had 2 kids push each other, and later in the afternoon I had one boy smack his friend in the face with his hat.  However, we got the boys to line up today and not storm into the swap & crafts shelter, so we're making progress.  What a long, hot day.  We had a heat index of 102F today.  It was a bit cooler today than yesterday, thank God.  I got pretty much no sleep last night so I dreaded thinking about that heat. 

On the flip side of that, even if the sweet little boys that we are leading were screaming and yelling all of the time, I met another woman that I believe has to be a saint.  This woman has been through so much, a grandmother with a grandchild that lives with her now, and I suspect she'll have 2 more with her soon.  She is exactly the sort of person that I seek out, and that these children need.  She was a bus driver, but she also worked with emotionally disturbed children.  She adopted an infant that was born addicted to alcohol & drugs.  Her natural son passed away a few years ago.   This woman is brave, and compassionate, and strong despite a titanium- riddled back.  And here she is donating her time despite all of her issues.  This is how it should be.  People helping people.  And she thinks like me!  I really haven't heard very many other people say that it's better and easier to just let things go until you come across something that you really need to fight about.  Letting go of the little things can really help to keep the peace.  Few people really get that.  I'm not sure when I became such a free spirit, but I really like being able to see the things that I see this way, I like being able to accept things in a way that I never did before.  And on that note... I am going to be 100% exhausted tomorrow.  How does it get so late so early?  I shall be back to let ya'll know that I have survived tomorrow!  Pray for me, k'? 

Monday, June 14, 2010

Roller coaster riding

So, this morning I noticed something.  At first I think my heart stopped, but then I realized it for what it was.  I can actually see Emily's knuckles!!!  At first glance I thought they were new rheumatoid nodules.  That would certainly have meant changing meds, which I really don't want to do if we don't have to.  So, with dread in my heart, I took a closer look and realized that her hands also aren't as swollen, and they clearly are knuckles poking through.  I see 2 on each hand so far.   To someone that hasn't gone through all that we have, that hasn't seen her hands consistently looking like sausages blown up a bit in the microwave, you may think I've totally lost it.  Let me tell ya'... that just about had me in tears.  It's the little things :) 

Fortunately for me, for the first time Kevin took her today to have her labs drawn.  I was planning on doing it as normal until I found out that I wouldn't be easily able to miss out on Scout Camp today but he had an out, so like it or not I couldn't go.  I'm not sure whether it's because I wasn't there (& it's hard enough with me there), because maybe she didn't drink enough water or because of things beyond our control but apparently labs were just not easy today.  They blew out a vein, had the little blood that they got from one location try to go back into her from the tube in a different location, and they still didn't get enough.  They could only collect 1 & 1/4 tubes, so she may have to go back Friday.  Woot. 

Otherwise, camp was crazy, a tad disorganized, and crazy, but fun!  There were a few less than helpful, snippety adults that really pissed me off, but my kids are good, and we all had fun.  It's a long, hot, tiring day so I know we'll sleep well tonight.  If we didn't have a heat index near 110F I'll be shocked.  The humidity was decently high on top of the temp being around 100.  The car thermometer said it was 101F.  And we were there from 8:30 AM to around 5 PM.   That's a long time to be outside for my whiteness.  I'll be stunned if I'm still white by Friday.  Friday is supposed to be a really long day.  I heard that unless it rains we could be there as late as 7PM.  Well, I think I have to crash.  I'll keep ya'll posted on the how the week goes.  And next week it's Arthritis Camp.   Whew!

Friday, June 11, 2010

School's out!

Well, it's been an odd couple of weeks.  We had to change Emily's methotrexate back to injectable from oral.  She cried so much about it when we first talked about it that we didn't want to talk to her about it.  Last week when we gave her the Enbrel injection I slid the MTX in first.  Boy, did she flip out.  It sucks to have to give your kid a shot.  It sucks more to have to give your child 3 shots per week.  It's hard when things have to change.  She had just adjusted to her new dosage of Enbrel when the MTX and even newer Enbrel dosages changed.  Now she's trying to adjust to our new medley, but I'm pretty certain that next month she will be starting Orencia.  She's not ready to discuss that either, but we will get there in time.

Sunday starts my vacation!  This next week is Cub Scout Camp!  Zachary is going for his first time, and Kevin & I are volunteering.  We're a little worried about how Emily will do, worried that we may have to take her home or over to Grandma's maybe, but we'll see.  The week after that is arthritis camp!  That is very exciting.  I'll miss her terribly, but I know it's such a wonderful opportunity for her.  To do more, to try new things, to be with other kids that all understand what she's going through.  Who could ask for more?  Oh, yeah.  And there are doctors and nurses on staff at all times, and they will administer her shots.  It's the only place that she could go. 

Kevin got a letter from unemployment the other day saying that he qualifies!  I have no idea when his benefits will start, and it's nothing compared to what he was getting paid, but it's better than nothing until he finds a new job.  Honestly, it has been a blessing in many ways having him home.  For one thing, someone had to be home with the kids when they were both home sick a week each.  But also he's so much more laid back.  Work was making him so pissy and agitated.  He was so unhappy there, and stressed.  There was so much BS.  The man that I fell in love with was still there, but he was kind of buried under the stress.   I have missed this side of him that I get to see right now.  The situation isn't ideal, but for now I just don't care.  It's so nice having him take some of the load off of me, having him and now the kids home.  It's just good.  However, since one of us does have to be up in the morning, I guess I'd better go to bed so that I can get up!  Keep us in your prayers please, if you can!  Thank you!   :)

Thursday, June 3, 2010

On our way to Orencia

Well, it's another week with a sick child, and a new flare to boot.  Whereas once Emily was so well managed, that seems to be a thing of the past.  It's funny how a new sickness or two can change the course of everything.  It makes me sad and angry.
Last week it was Zachary that had the weird new "virus" that seemed to respond to antibiotics.  This week it's Emily's turn.  I predicted that one way ahead of time.  What I didn't predict was how she would flare up again, so close on the heels of increasing her dosage of Enbrel.  It hasn't been too long since we increased her, but I believe it's been long enough so that it should be working better than it is.  Today her hands are bright red, her knees are puffy and she's having a hard time walking.  All week she's been hanging out on the couch.  Thank God for the sleeper sofa bed!  That was the best decision we've made in a while.  She wanted to go to Brownie's for a while tonight, but she didn't want to stay long.  She gets so tired so quickly when she's flaring.  It's just wrong to watch her hobbling around like a tired, tiny, little old lady.  So, I suspect that at her next appointment she will be switched to Orencia.  The thing that worries me about that is it's an IV treatment.  Somehow, I feel like we have some control over the situation giving her the shots ourselves.  I can't do that if we move to IV.  Not to mention the first month we'd have to drive an hour away every week to go hang out at the hospital for it.  However, on a more philosophical note, I think that God made these sick children more lovable, more sweet, more heart-wrenchingly perfect.  I love all of my children equally but in different ways.  The strongest bond, however, is with Emily because I pour so much love, thought, research, time, energy, heart, sadness, happiness, everything..... into her.  I try not to let her see how much, but my thoughts focus mainly around her.  I know that she knows to a degree.  She went from being a huge Daddy's girl (before we realized there was a problem) to a total Mommy's girl.  She knows how hard I work to try to make her life easier.