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!!!

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 :)

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... :)

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....

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...

'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.

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!