Real quick (good news) update/ Prayer requests

Ok, I know I said it before, but I have to say it again:  Either the Prednisone decrease is working miracles or the Procardia for the Raynaud's / high blood pressure is.  I don't really care which it is;  it's just good!!!  Last night Em was doing a funky dance for a good 3 minutes, laughing the whole time!  Today she was bugging her brother- hugging him and acting like she used to with him.  He has always been her world, her rock.  Since October she has just been ambivalent.  Until today  :)   She did some beading, too.  She's made quite a few pieces, actually.  That is something that she always said that she couldn't do because it hurt her hands.  That was pretty exciting!

Also, she had physical therapy today & yesterday.  I was at work for both sessions, but Kevin told me that she was jumping for jump rope, doing hopscotch, and actively participating both days!!!  The last couple of months it was hard to get her to do anything other than swing.  And the steroid rash that she had is lightening up, she's not as blotchy, and her Dermatomyositis rash has gone from red to a brown- definitely fading!  :)  I'm hoping hard that maybe we'll be given a decrease to weaning schedule when we go back to her doctor on January 5th! 

I have 2 prayer requests for any that wouldn't mind.  The first is for a lady on my Juvenile Myositis boards.   My heart breaks for her!  "Please keep my family in your thoughts and prayers. As Aidan approaches his one year diagnosis anniversary this January 1, his father, my husband Tony has taken a turn for the worse with his Melanoma (cancer). Hospice has been called and will be coming in to help alleviate some of the stress. Tony's days are numbered and we certainly could use some extra prayers during this time. We, the McDaniel Family, have had one heck of a year. Thanks so much and a blessed New Year to everyone! Karianne"

Next, I found a request for a child that is a relative of someone else on my myositis boards.  I cannot imagine this being wrong with my child, either.  They write: " 

This is me asking all of my friends and family to pray for my great nephew Dalton. He is a small child that has already undergone a kidney transplant. The following is a status update on his health posted by his mother a few minutes ago. PLEASE PRAY!!!

Dalton's kidney biopsy showed that he was having cellular acute rejection which is usually reversible. However, after several days of treatment his kidney function continues to worsen. I just found out that he also has antibody mediated rej...ection, which usually causes graft loss. This means that his body is making specific antibodies against his transplanted kidney. In an attempt to remove these antibodies from the kidney he needs to have plasmapheresis. Please please please pray for a miracle for Dalton!!! I will give an update as soon as I know more."  If ya'll could take just a minute or two out of your busy days to please help these families, I'm sure they would appreciate it.  Thanks!

Best Christmas Ever!

Well, Christmas has come and gone.  I was really not in the spirit a week ago.  So much has happened this year.  It’s really hard to believe how much has happened.  One year ago Emily was still laughing & running around in her “old” body.  We had no sign of what was to come.  She was tackling her brother and chasing him around the house.  Now she yells at him a lot, sounds different, looks different, smells different, and acts differently than she did before the steroids puffed her all out.  On the bright side, she is walking.  If not for the steroids, she wouldn't be.  For that I am grateful, and blessed.  However, we had been trying to find ways to draw out her “old” personality, to make her happy again.  Well.........

So, I was sick for Christmas.  So sad?  Not so much.  I needed to get sick, needed the break and the excuse to just SLEEP!  Instead of cooking a feast like I had planned on, I slept on & off  and listened to the kids playing.  It's so funny to hear the 3 of them together sometimes.  Oh, the conversations they have!  Serious conversation on Pokemon, Rapunzel & fairies.  They had a great holiday.  From going over to their great-aunt Pat’s house and hanging with family to being home and just enjoying all of their new toys, Wii & DS games & movies.  Who can ask for more than hanging out with family?   Thanks to my picture posting on Facebook, Aunt Pat knew to warn those that don’t follow Facebook.  No one had that look of shock when they saw Em and everyone acted like all was normal there.  And I got my wish.  While laying in my bed snuggling with my blanket, trying to wake up, listening to the wind howling outside, and then rain, I heard Emily in hysterics.  I hadn’t heard that wonderful noise in a while.  At least, not like this.  This was full-blown happy laughter.  I had really, really missed that.   I’m not sure what it is- maybe the magic of Christmas, maybe the decrease in Prednisone, maybe the blood pressure medicine that she’s on now- I dunno.  What I do know is that she seems to be getting a little bit back to herself.   While she didn’t get everything that she wanted (I couldn’t find the Holiday Barbie, but that was pretty much it) she got almost everything.  No one cared that we didn’t have a feast.  In fact, everyone was very happy to have my leftover homemade chicken soup!  It was a beautiful day of relaxing with family and enjoying the togetherness.

And the Procardia is working!  That is the medicine that she is now on to help control the Raynaud’s and lower her blood pressure from the Prednisone.  Every time that I touch her hands they are warm.  That is so damn cool!!!  It is a huge relief.  Maybe I won't have to panic through the next freeze, wondering if she'll get frostbite at school again.  Maybe she'll be able to go out of the house in the summer in shorts!  Or swim in a pool without turning purple and hurting too much!  Maybe it will keep the Raynaud's at bay, though if it starts up again, we have a TON of mittens, thanks to our thoughtful Secret Santa!

I could be wrong, & maybe I shouldn’t even wonder, but I believe it had to be from the school.  Some of the things that we were given were just too perfect.  And that makes my heart melt even more, because we didn’t even ask.  I know that if we asked they would have given us a few things, but we didn’t even and yet they still felt compelled to “spoil” us.  It is no secret that I love our school.  Em & Zach both have had some AWESOME teachers & aides, I love the nurse and clinic staff, as well as the guidance & ESE departments.   I think the new principal is amazing, which I’m sure of because the staff as a whole is so much happier since she took over, and their grades have gone up.  But I never expected this.  Ok, so maybe I’m wrong.  Somehow, I don’t think so.  Whether I am or not, we are all so grateful.  We needed something good to happen, some good news!  I try so hard to always have a positive outlook.  I try to take everything in stride, but there are times when it’s just very hard.  Now I have even more to think back on and smile about when things are going wrong.  Thank you again, our wonderful Secret Santa.     

Good news/ Horrible appointment (Very long)

Today was a roller coaster of a day.  We had a noon appointment at Emily's rheumatologist to have her Remicade and Solumedrol, as well as to see the doctor.  Off we went on what was apparently a bad traffic day.  I hadn't thought about traffic since my children are all still in school this week.  Wednesday is the last day of classes before the holiday break.  On the way up we got stuck in traffic on the interstate.  It's a bad sign when you're only doing 10MPH on the interstate and you can't see where it starts.  We actually got through it fairly quickly.  We even got to our appointment a little early.

One of the things that no one stops to consider about steroid use until it happens to someone you love is that, with all of the steroid swelling (Cushing's Syndrome) the veins are harder to find.  As with last months vein blow out, we had even more issues today.  The veins are hidden by the swelling, some so deep that they can't reach them with the needle.  Others were rolling, and 2 they thought had scar tissue already.  She got poked 5 times before they gave up.  We decided to call today a loss and try again in 2 weeks.  To be safe, we gave her  a booster injection of Humira because it will last 2 weeks.  I was worried when they said that because I have heard the stories of how badly Humira burns.  Apparently, when mixed with Lidocaine after 5 big pokes (drawing the catheter in and out trying to get the sweet spot) it doesn't burn as badly as it probably would have at home.  I was really worried when they suggested it.  I begged for Enbrel, partially because I have a full box in my fridge still.  I didn't think they'd agree; part of the reason for the Remicade is because we thought the Enbrel was failing after over 2 years on it.)  We were still there just as long as we would have been with an infusion, so she got to watch "Dispicable Me".  She was happy about that, but it was little consolation. Today's appointment was fairly informal, actually.  For a while we just chilled out with the nurse practitioner, then one of the doctors joined the roundtable.  It was good to just chat about stuff.

We did have some good news from the appointment!  For one, after talking to Em and asking her what she thinks about her Raynaud's, I asked if we could try something for it.  I had thought that it had kind of gone away, but it has been bugging and worrying her, so they gave us a prescription for that.  It is a duel purpose medicine- it also works to lower blood pressure, and hers has been high from the steroids.  Maybe that will help her to feel better, I hope.  Without even seeing an episode they said that her Raynaud's is obvious to them.  Even though I should be used to that, it hurts because it's sad that something so crappy has marked her.  I'm hoping that this will help make it less obvious, among other things.  Also, we are continuing to decrease the Prednisone by 3MGs a week!  This week we go from 10MLs to 9MLs, with next week going to 8MLs.  The hope is that we can get some of the Cushings water weight off of her.  We all agreed that currently, her biggest problem getting up seems to be the big ol' tummy in the way.  Since everywhere is swollen her whole body is out of whack.  That makes it harder to do just about everything.  However, her puffy tummy being the problem is way better than her muscles being the problem.  Today the issues seemed to be more joint related, with the elbow, knee and spine kicking in.  They seemed a bit relieved with this, and decided that it was a bit of a blessing that we couldn't do her IV's because they will be increasing her Remicade.  Secretly, I was happy because she would also have had Solumedrol today which I love... but it would add more puffiness to her again, and she's finally starting to lose some.  (Yes, I rejoiced inside of my head).  The doctor asked her to show us if she could do squats, sit down criss-cross-applesauce, and get back up herself, at which point she burst into tears.  I swear, her crying just makes me want to cry.  I feel so spent by the end of these appointments.  She hates going there.  I think she thinks it's the staff that has an issue with her veins, not her body being the problem.  I think she thinks it wouldn't happen at our old hospital, but I'm equally sure that at this point it would.  Anyway, when it was time to go we were both exhausted, but I had a little gift for the nurses at the unit she had stayed in during October.  We had all of the soda can tabs that people had collected and given to us.  I had a milk jug filled with them and several smaller plastic bags.  Our Cub Scout pack and some of the school staff that is in our pack had contributed a LOT.   I wish that I had a camera to take a picture of the face of the nurse that I gave them to!  She just lit up!  It was wonderful to watch.

On our way home traffic was thick, and as we were almost home an accident happened right behind us.  The funny thing is that I knew it was going to happen, but I don't think that either involved party did.  Still, seeing 2 accidents in one day had me feeling paranoid.  Maybe it's because (I'm pretty sure) I'm sick.  I dunno, but I was really feeling uneasy.  We popped by our Cub Scout Christmas party to say hi, though I kept a distance.  I'm fairly certain that I'm not contagious, no fever or anything, but just in case I didn't want to take any chances.  We still had a nice time.  She tries so hard to enjoy herself, but she doesn't seem to really know what to do right now.  She'll get it.  I know.  Her doctor said that the first 6 months of steroids is the hardest for these kids.

Finally, as we were getting the kids ready for bed (and it was late for them) we had a knock at the door.  We were a bit surprised- it was already 9:30.  Fully expecting bad news, we got quite the opposite.  I believe that I have expressed before that I don't need "stuff".  I'm pretty happy having a cohesive family unit.  Some people want stuff to help fill a void.  I don't have that void, and I'm pretty simple and easy to please.  However, I am very emotional (HATE that!!!) and very empathetic.  "Santa" knocked on our door.  We aren't sure who, though we have an idea, but someone blessed us beyond belief.  I can honestly say that I've never had anything like this happen to me/ us.  It was so amazing, and really it couldn't have happened on a better day for me.  To me, our lives are pretty normal, Emily excluded.  I guess when you have a crazy life, crazy is your reality.  When everyone else thinks that you're crazy, you're puzzled because to you it's normal.  That's how I feel.  I'm so used to dealing with things, taking care of everything, and getting hit with things that I'm just used to it.  Apparently, it's not normal, and someone else took notice from someone.  Probably from Emily.  That girl has endured so much this year.  It has NOT been a good year for her.  Now we can spoil her a bit more, and her siblings as well.  I know that it's been hard on them, too.  It's just so hard to believe how blessed we were tonight!  We both just keep saying "wow!" and shaking our heads in disbelief!  Omgosh, I had to keep myself in check because the kids were still up and all that I wanted to do was just cry.  How beautiful the gesture!  Indeed, we are blessed.  So, if our Secret Santa is reading, thank you so much for touching our hearts, for helping us to remember that we are not alone out there, that God is looking out for us and working through others to touch our hearts when we need it.  No one could ask for more of a Christmas spirit than that.  Thank you!  And to the rest, Merry Christmas, Happy Hannakah, Happy Kwanza, or whatever else you practice.  I hope that everyone has wonderful holidays!

Little update....

It's been a crazy busy week, but a pretty good one! 

The big news is that Em seems to be feeling a bit better.  I'm fairly sure that it's because of the latest decrease in Prednisone.  She pointed out the other day that the swelling in her face has gone down enough so that her eye isn't half-shut anymore.  She has laughed more, talked more, & seemed more like herself in the last week.  She did say that her legs are tired again tonight, and statements like that pop up periodically, but I know that with Myositis it's baby steps.  The rash is looking better and she's walking ok, so I guess that's about the best that I can ask for right now.

The chair fitting went ok.  We had discussed this for a while, she seemed to be excited about it.  When the time came she got all upset and wouldn't contribute any ideas to the mix.  I had previously explained that since this was for her I wanted her feedback.  I got nothing but tears and attitude.  She had the choice between 2 transport chairs and a bunch of wheelchairs.  Our PT decided that the transport chair would be better for several reasons.  For one because it has "off road" wheels & we like to camp and be in the woods.  Also because the handles are higher for us to push her, which is helpful because she probably won't be able to wheel herself.  She'll use this often enough even without bad flares, but if she ever gets as bad as she did when she first got bad with the myositis and the first few weeks after meds, she'll need to be in it a lot and there's no way that she'll be able to move herself.  I hope to God that she never has to deal with that again, but since I try hard to be realistic and prepared I know that she will likely have to go through this again.  We just have to stay positive, hope for the best, keep the faith, and prepare for the worst.  Hopefully the chair will move along the insurance rope quickly.  Depending on how they run it, it can be 2 weeks or 2 months.  Grrrrrr!  We shall see.  I have to call them tomorrow.  They sent me paperwork to put it through our regular insurance which I was trying to avoid because of the high copay.  Hopefully it will be soon.  I'll keep posted as I can.

Last little thing- I was very happy a couple of months ago because our pedi gave us a prescription for Zach to stay on the preventative asthma meds through the winter.  I had him on Flovent twice daily because generally this is the time of year that he gets sick.  His asthma flares, he gets infections and then bronchitis.  Well, apparently he hasn't been taking his inhalers.  Little bugger.  His throat is all red, he had a fever this morning, and he sounds bronchial.  It has been a whole week since we've been at the pedi's office...  Sigh.  God made him extra cute so we don't kill him.  He is a very blessed, beautiful boy.  !!!

Thank God for church

Admittedly, we haven't gotten to church as often as we'd like, or as we probably need to go.  We're always so busy.  Sunday's have been totally my fault.  When I haven't been working, I've been too tired to move.  Sunday's are the only day that I can't run errands (aside from grocery shopping), can't take a child to the doctor, can't make a bunch of phone calls that need to be made.  All week we go, go, go, and by Sunday I crash.  Thursday was our weeknight sermon, but now that's our Brownie night.  We try to go when we don't meet, but it's far from a weekly occurance. Simultaneously, I have desperately been seeking a breakdown without much luck.  It seemed as though I've become too strong to just fully break down.  I've become so strong that I'm strong when I don't need to be.  Not complaining... it's just funny.  There's something about church....  Let me back up a bit.

So, we went to see "Tangled" in 3-D on Friday night for Emily's birthday.  We had a wonderful time!  All of us enjoyed the movie.  My oldest declared it to be her new favorite movie.  It was a nice, quality family night.  We all laughed, and enjoyed each other.  It was so nice to hear Emily laugh!!!  She really let go in there in a way that I haven't heard in a while.  Afterward we went toy shopping.  Her grandparents had sent money in a box full of small bears for her birthday.  :)  She was so excited!  The problem is, she has no idea what she wants.  So, I'm standing there watching her wobble up and down the toy aisle trying to find something that she might want to take home.  Usually such an easy task, but right now there's almost no joy.  She found one small thing, but then she gave up.  And I couldn't help but think about last year's birthday.  She had a roller skating party.  She was doing so well.  One year later she can't really get into a store and back out without her chair.  She also believes it's time for Raynaud's meds.  She's worried that it will be like last winter.

I couldn't wait to get to church!  It's always so uplifting for me.  And she has always really enjoyed going, as well.  The kids there have so many activities to keep busy!  Video games, Lego's, a rock climbing wall.  Of course, my son just wanted to stay home for once.  He usually enjoys going, too, but not today.  Em & I got ready and left right on time.  When we got there we found a handicapped spot right away, and got to her class area fairly quickly.  All was good... until it was time for me to go to my section.  She cried and cried that she would miss me too much, just stay with her.  I asked if she wanted to go with me, but she didn't want to do that either.  I really felt that we NEEDED to stay.  I really wanted her to have fun in her area, to have a meaningful lesson, but I knew that was not to be.  So, we rolled outside and sat for a bit trying to figure out what to do.  She was so excited to go today that it broke my heart to see her sobbing.  It was a long, long time before she regained some control of herself.  I wheeled her into the lobby, and we sat there through the music.  (One of the reasons I love this church so much is for its music!)  It's too loud in there for her during music worship, so we waited outside until it was quiet.  One of the ladies that used to help out in her class on Thursday nights had passed us a few times.  At one point she came over to us.  She said "I feel like I'm being called to come talk to you.  I don't know how I could help, but I feel like I need to do something."   Now, I admit to tearing up often, but just a few seconds at a time.  At this point, I could barely speak. 99.9% of the time I'm able to keep composed, but church has always had this ability to tear me open, leaving me exposed.  I explained that she did know Emily, that she didn't look like herself.  I showed her my favorite pic of Em, the one taken 3 months ago in school with the sassy look.  We talked for a few minutes, and she gave me her name and number.  I know that I should call her, especially since she was led to us.  Why do I find it so hard to accept help? 

We finally headed inside.  I love the sermons!  Today's sermon was on Kings 2, 2- the story of Naaman.  The mixed discussions seemed to be tailor made for us.  We discussed sickness, problems, how to act when we are offended.  Some lessons for her, some lessons for me.  On the way out. all of these people kept coming up to her to talk, to kiss her head.  A few people came up to her to tell her that she is beautiful.  I was so thankful that I started to tear up again.  It's the little things.  You have to look at the small blessings.

I ran into an old friend (twice today!)  We talked a bit and he started to ask me how Kevin was doing.  I mentioned that he was dreading the iodine-free diet that he'll need before he does the radiation for the questionable cells in his throat from the thyroid.  Thought he knew about that.  And that's when it hit me:  In just the past seven months, my daughter has been diagnosed with 2 separate disabilities on top of the existing arthritis, Kevin has become unemployed, faced the possibility of cancer, become the human slug from the doctor making him stop his meds, recovered, and then told to stop the meds again,  dealing with the financial problems that come from having a child with disabilities and the lost income.  And we're sane!  And most of us are fairly happy.  I'm not sure how.  Truly our story is absolutely ridiculous to anyone that hasn't kept up.  I'm sure that if I told anyone they wouldn't believe me if they didn't know what was up.  My mom summed it up perfectly- we're like a tragic comedy.    If we could find a way to make Emily happy, to find some joy through all of her pain, or better yet... a cure.  Then we could all be happy.  We need to find some way for her to get her smile back.  That's the hardest of all.  I know it will happen.  The question is when?

We went on a mission for Stride Rite shoes.  Her doctor says they would help her.  No luck today.  That's ok.  We went to a lot of different stores today.  She was quiet all day, and she stayed in her chair all day.  I always get so paranoid.  Is she sick?  Or maybe it's just an off day?  Is it because of the decrease of the Prednisone?  Probably it's simply that she was tired.  She looked through a bunch of stores today and found two more things to buy.  Movies are the only thing that sounded good to her.  We wheeled up and down the toy aisles to no avail for a very long time.  She used to always know what she wanted.  I have absolutely no idea what to get her for Christmas.  I know it will work out. 

And it was 9 years ago right about this time that my water broke with her.  Nine years ago that we were blessed with her.  Happy Birthday, Punkin'.  I wish you well.
 

Some little blessings....

I have been trying to find the time for a quick update for days now!  We've been busy getting paperwork and such together for the wheelchair.  I cannot wait to get this child a chair that fits her well.  I only wish that her school had a wheelchair ramp.  They have an elevator, but today the elevator broke after lunch.  It's not the school's fault- they constantly have people out to fix it.  It just doesn't stay fixed!  I told her she can go to school if she likes, but if she's tired we'll have to keep her home, if she doesn't think she can do the stairs.  While we're out and about she can barely walk more than 50 ft without help.  I don't know how the heck she does it at school with the elevator working perfectly!  She's happy that the kids have stopped asking what has happened to her.  Poor little thing has been so self-conscious.  When she realized that she could no longer button a pair of favorite jeans the other day she cried.  She breaks my heart, but she always marches on, even when any other person would have dropped and been begging for a reprieve.

I'm NOT holding my breath that this will stay in effect, but a temporary paper Medicaid card came for her today!!!  It says that the starting date is July 1, which means that her hospital visit should be covered, and hopefully they will pick up the co-pay on the chair!  A $35 doctor visit by itself isn't so bad, but her Orencia co-pays from September and October were between $150-$300.  There were 3 of those, plus the $200 in prescriptions a month.  The doctor copay from the hospital was $300.  So far, that's the only bill we've gotten in.  With Kevin still on unemployment and me not making a whole heck of a lot, Medicaid will be a Godsend.  Heck, even when Kevin was working the medical bills were drowning us.  Our insurance company never wants to pay the Opthamalogist. That's usually about $200 there.  I almost cried when I saw that paper.  I think my heart stopped for a minute!

The only other real item to note is that her PT told us that all of the therapists at her center are allowed to recommend 2 kids each for a reward from the commission.   ( I think that's what it was.  We were so shocked and touched that I missed half of it!)  She recommended Emily and another girl with similar issues.  She said to expect something good from them for Christmas!   I also had a rather lovely conversation with the audiology secretary.  Emily has her own prize drawer there next to the audiology secretary.  How cool is that???  It's the little things like that that really make me feel so blessed.  Seeing the compassion people have for a small child that's struggling really makes my heart melt.  That's what the secretary and I were talking about.  She seems to be a very special lady.  She was telling me how her baby was born with her diaphram not closed up correctly, so her intestines were all discombobulated.  She said that even now the success rate for a surgery like that isn't very high.  She spoke about how stressful it was, and she said that she wished that she knew then what she knew now.  Her daughter is currently in her residency as a pediatrician at All Children's Hospital.  She wants to heal babies.  Conversations about what's important don't come often, not from people that really understand.  That is a blessing to find, too.

I also have some stuff at work in the next few weeks that will make things crazy but will be exciting!  I'm really looking forward to it!

Well, Brownies was fun tonight too, but once again it is already past my bedtime.  How does this always happen?  Tomorrow, please stop and smell the roses.  Or the breeze.  Stop to notice the cloudless sky or the fog.  SOMETHING beautiful.  And be thankful for it.  We are all but a grain of sand.......