True Love

It is hard to put into words how much you love your children.  I think I love all of mine equally, yet differently.  Certainly I have different relationships with all of them.  Ashley was always fairly independent.  She was always off with friends or biking around the neighborhood.  She was a typical kid.  Now she's become quite an extraordinary young lady.  She's going to be a pretty amazing adult.  I can definitely be the mom to her but I can also be friends with her.  We have achieved a good balance.  Zachary is a lovely little guy, working hard on becoming a little man.  He's a regular boy, but he's sweet, sensitive and lovely to a point.

We have different opportunities with Emily.  On the one hand, she's so much more grown up than she should be.  On the other hand, she's still so much like she was when she was five.  She still cuddles and needs us like she did back then in many ways. 

With our other kids, we look at them and see how they are growing up.  We see different opportunities in their lives;  we see them able to kind of do what they want to do.  For Emily, something always seems to go wrong whenever she has something planned.  And it kills us to see her so sad, but she always seems to bounce back.  I guess the hardest part is that she shouldn't have to miss so much.  Looking through her school yearbook tonight I thought of so many events that she wanted to go to that she missed.  And it isn't fair.

I am usually a rock.  I have learned how to survive and deal with the stress as it gets thrown at us.  I try to always do it with a positive attitude.  This is our reality.  It's times like tonight, driving in the van on the way back home from the hospital, watching her in the rear view mirror and thinking about medicine changes and disease progression that I really start to feel like I've been punched.  I wonder what her adult life will be like, and if she will always struggle, if she will always be so sick.  Sometimes I think that I have gotten so used to all of the medical stuff that it doesn't really hit me, like I try not to think about everything too much.  When I do it makes me so sad.   We have to love her harder, be more gentle.  And no matter how much crap gets thrown at her she is always so sweet, so cuddly and gentle.  And I have to say that right now I have actually grown to appreciate a bit how puffy the steroids have made her.  She's extra-cuddly.  I'd rather have her off of steroids but I can try to appreciate the little things, right?

 While waiting in our hospital room, I spent some time cuddling with Emily on her bed.  One thing that I noticed was her sweet smell.  When she was eight, before she started taking steroids and so many other strong daily medicines, she still had that sweet baby smell.  That was yet another thing that Prednisone stole from us when it gripped her.  Today I could smell that again.

While she still gives great hugs, before she got really sick she used to give the best hugs ever.  She would wrap herself around you and cling tightly with all of her might.  It's days like this, cuddling in a hospital bed, that I wonder where the time has gone.

We did have good news tonight.  The Cystic Fibrosis test came back negative.  I assumed that it would, but it's still stressful waiting.  The Orencia that I wrote about yesterday was not approved through insurance today, so we will wait and see.  There is a constant up and down in our lives of extreme good and extreme bad- our counterbalance.  We certainly have rough days, but I wouldn't trade any of them. 

Crazy day coming to an end. (Long)

Today went by in a whirlwind!  We both had a difficult time waking up this morning, but we actually got to our first appointment on time. We waited for about ten minutes to be called for the CT scan of Emily's sinuses; the actual scan was even faster. She did very well. She was a little scared once the machine picked up speed. It sounds like the whirring of a washing machine. That can be scary when you are not expecting it, especially when it is over your head.

From the CT lab, we wandered upstairs. We had a longer stay in the pulmonary waiting area, but they called her at exactly nine. The tech that performed the test was such a sweet lady! In fact, her daughter has chronic conditions, and we share a doctor. She was telling me how her daughter decided that more kids needed things to do in the hospital, so she decided to gather supplies and bring them to kids in a wagon. She was seven years old at the time. That really touched my heart!

Anyway, the tech was wonderful. She made Emily feel more at ease, and she explained everything very well. She took gauze and soaked it in a solution made to produce sweat, then she wrapped the arms, put electrodes on them for five minutes per side and wrapped them in ace bandages. Em grabbed the tablet and watched "My Little Pony" for the majority of the time. When we finished there it was already after 10:30. We walked down to the fourth floor to let them know that we may be late. I'm so glad that we did! Emily hadn't eaten yet, and we still had to get to the ENT for eleven. I stole a few minutes and grabbed her some chicken from Wendy's. The wait was interminable!
We actually made it to the ENT on time. I don't know how considering that we had to wait for valet to bring the van. (Using valet is so much easier than walking for blocks with a hurting, tired child and a bunch of stuff that you need.) I had thought that we were in the home stretch. We would have been, but the ENT was running about forty-five minutes late.

I really thought that I knew how this appointment would go. I was not expecting to see so much inflammation still on her CT. Her right side is nice and clear. The left side remains all swollen and shady. The doctor can't say for sure that it's mucus. What they do know is that it is inflamed. They decided not to worry about treating it right now because she has not displayed any symptoms of a sinus infection. Of course, they didn't have the results yet from the Cystic Fibrosis test. I am assuming that will be negative.


We did not get back to the hospital until one P.M.   I could not believe that we were so late! I was very thankful that I let them know that we may be held up. Shortly after arriving we met up with an advocate who works for a company that works closely with our insurance company. She asked me a ton of questions, and she told me that she will try to get us whatever help she can. Her job is to help get medicine and equipment approved, help to find resources, programs, clinical trials, and things of that nature. She flew in just to meet with me for about an hour. I was very impressed. We are going to work on getting a hospital bed approved!  What a blessing this service is.  And she was wonderful!

After she left things started to settle down a bit. The rushing around was mostly done; we just had to wait for the IViG to get started so that we could move to a room. I didn't expect to see a doctor since we did not fill out any of the paperwork, but as we were packing up to head to our room for the evening our main doctor came over. We totally love her!!! She is just so sweet, but she also has more years of experience than the other two rheumatologists combined. She did the strength tests and was very pleased with Emily's muscle activity. We talked a little about medicines- mostly which ones Emily is on and which dosages. She had just started looking at Emily's hands when she asked if we thought that the Remicade was doing enough. I replied that I didn't think that it had been quite enough for a while. Emily was actually doing so well today that I was surprised that she even asked. She told me that, as much improvement as she has seen in Emily, she doesn't think that it is quite enough. Because Emily now receives her IViG to boost her immune system back up, she feels more comfortable about aggressively attacking the arthritis. She wants to see her running more, being more active, and acting like a kid. If insurance approves it, tomorrow she will be starting Orencia again. She had three doses with our old rheumatologist, but when we changed doctor's, they chose the right route, which at the time was high steroids, Methotrexate as second line and Remicade as third line for Dermatomyositis. It wasn't thought to have any effect on DM before, so we changed. Emily is a little nervous, but I'm actually a little excited. We are pushing the envelope, but lately she's had more days where something hurts than not, and that isn't how it is supposed to work.

As one last little shocker, once we moved to our room and got settled the nurse announced that she was going to briefly stop the IViG and give her a round of Rocephin, a good all-around antibiotic. At first, I was very surprised, wondering what I missed. It was a very long day. I realized that Dr. E likely saw the CT scan results from this morning, saw the inflammation, and decided to tackle it. This is one of the reasons why we love her! She isn't afraid to treat the WHOLE child. While some doctor's only take on little pieces, she takes over everything that she can. And this is why we would rather drive two and a half hours from home instead of drive an hour away.

We shall see what tomorrow holds. It will be today by the time this posts... Hopefully we will also know the results of the sweat test no later than Wednesday. Praying that tomorrow is an easier day!