Parenting at a distance

You may or may not know it, but when Emily first got sick I was on the other side of the world for work.  It was difficult for me to hear she was sick and not getting better.  I'm sure it was scary for my husband who was the one at home dealing with it all, but not being there, having absolutely no control and not even being able to ask the doctors all the questions I had was so hard.  Then when things took a turn for the worse my work rushed me home.  That 13 hour flight was the worst because at least when I was in the office I could get a call from my husband if there was a change, but on the flight there were no phones and for 13 hours I honestly worried that I may have held Emily for the last time months ago and didn't even known it.

I'm gone again for work and being away is surreal.  All of my work items where packed away after I rushed home the last time and still have things the way I had left them.  The book I was reading when Emily got sick still had the sticky note with the nurse's email from her first hospital; my digital picture frame has photos all pre-SOJIA.  It's almost like SOJIA was a bad dream and I just woke up back in the office, although it's a new office and this time I am only a six hour flight away, but sometimes I have to remind myself it really did happen.

It's another dimension to all of this, not bad, just different.  So this is why I have not been posting on Tuesday and Thursday; I am parenting at a distance which consists of lost of wishful thinking and updates from my husband. At least this time there is no fever and there is no rash.

Parenting at a distance

You may or may not know it, but when Emily first got sick I was on the other side of the world for work.  It was difficult for me to hear she was sick and not getting better.  I'm sure it was scary for my husband who was the one at home dealing with it all, but not being there, having absolutely no control and not even being able to ask the doctors all the questions I had was so hard.  Then when things took a turn for the worse my work rushed me home.  That 13 hour flight was the worst because at least when I was in the office I could get a call from my husband if there was a change, but on the flight there were no phones and for 13 hours I honestly worried that I may have held Emily for the last time months ago and didn't even known it.

I'm gone again for work and being away is surreal.  All of my work items where packed away after I rushed home the last time and still have things the way I had left them.  The book I was reading when Emily got sick still had the sticky note with the nurse's email from her first hospital; my digital picture frame has photos all pre-SOJIA.  It's almost like SOJIA was a bad dream and I just woke up back in the office, although it's a new office and this time I am only a six hour flight away, but sometimes I have to remind myself it really did happen.

It's another dimension to all of this, not bad, just different.  So this is why I have not been posting on Tuesday and Thursday; I am parenting at a distance which consists of lost of wishful thinking and updates from my husband. At least this time there is no fever and there is no rash. 

The stages of an infusion

 

1. Anxiously waiting

 2. The IV, includes screaming and lots of stress for all involved

3. Exhaustion

The infusion is no fun, Emily hates being back in the hospital even for a few hours, she hates the IV and let's face it those hurt, she is always asking about when the next one is and how long till it happens.  "How many days till my fusion?" is the big question on this sweet girls mind.  It seems to be working so far, other then being tired a lot there is no rash or fever present so we are happy about that.  We also talk about how she has no more shots.  Since the Kineret burned so much we try to tell her how this is so much better the infusion is, but I don't know that helps much.  Nothing about this nasty disease is pleasant.

No exceptions!

After Emily was officially diagnosed with Arthritis I started looking into swim lessons.  The Arthritis Foundations recommends swimming as a great exercise for your joints and so I figured if I could bother Emily and her brother deep into swimming early perhaps it would stick with them.  At the very least they would know how to if they decided that was their exercise of choice.

Once she was out of the hospital I began looking for programs.  Anything private or semi-private was out of our budget so I turned to the YMCA.  It's still $50 per child for only four lessons, but that's better then $180.  Emily's brother is at risk for JIA in general because it's probably genetic and he is our child too; besides that we aren't going to leave him out so that doubles the cost of us.  I've tried teaching them on my own, but I don't have access to a warm indoor pool and we all get cold easily in the outdoor pools here so it becomes cold and unpleasant very quickly.

Anyways, I called the local YMCA to see about signing up Emily for some lessons.  The ones for her age group were without parents in the pool and since Emily is still pretty weak I knew she'd need some extra help so I figured it was as simple as telling our story and getting permission to be in the class with her.  No.  It's not allowed. No exceptions.  Not only that, but the Tai Chi class the YMCA has that is sponsored by the Arthritis Foundation is not for anyone under 15.  No exceptions.  In fact the YMCA made absolutely no exceptions at all.  I couldn't get a manager to call me back to talk to me and the only class I could get into the water with Emily was the infant class.  At first I figured that would work out because her brother is only two and would be in it with me, but we ended up paying $100 for one lesson for just Emily where she was completely ignored by the instructor.  It was horrible.

First, Emily was sick with a cold for the first two classes.  I can’t risk getting her sicker when she has a suppressed immune system.  So I thought perhaps they would understand our situation and allow us to reschedule for another class.  No, no exceptions.  Then it turned out the class was during a holiday weekend so there went another class, they just canceled it.  Finally we made it to the last class and it was an epic failure.  Emily's brother refused to even get into his swim suit.  I paid $50 for him to watch class and another $50 for the instructor to ignore Emily.

Emily and I got into the water a little early to try to get her warmed up.  Anyone with arthritis or joint problems knows warming up is important.  Not at the YMCA, that is not allowed.  No exceptions. We had to get out of the pool and wait five minutes for class to begin, wet and cold. Finally class begins and the instructor comes around to each child.  I tried to explain to her why Emily was a five year old in an infant class, all I managed to get in was that Emily has arthritis and is not as strong as other kids her age.  The teacher took Emily from me, sung the ABCs to her, returned Emily to me and then ignore Emily the rest of the class.  Leaving me to try and get Emily to do the kicking and bubbling on my own.  She skipped us each and every time she went around the class after that.  Finally Emily was not enjoying herself and I was beside myself with disgust so we got out and left.  I didn't even change out of my swim suit.  It was a horrible experience to realize that even though you ask for help and seek out things that will help your child there are places where there are no exceptions.

My Emily

Last week I took Emily to get her haircut.  As she watched her reflection in the mirror I felt like I could see pain on her face.  She was not happy with the way she looked.  Later that day she asked me if her face would ever look the way it did before she got sick.  The swelling is what I consider severe, but we can't get it to go down until we get off all of the steroids.  With 7ml still each day getting to 0 seems like an eternity away.

We have had to be mindful of her self image now.  We no longer tell her she is a big girl, we say she is growing up.  I like to tell her how wonderful motherhood and marriage is, but now I just talk about marriage.  I realize that these treatments are so new and so life altering they may very well take away her ability to ever have biological children and I have no doubt that may be very painful for her one day.

The doctor seems to feel that it's ok for kids to be on the medicine because they aren't aware of how it changes them physically, but Emily is very aware and an intelligent child.  I wish we had a doctor who had a child dealing with this,  not because I wish it on someone else, but because there are so many daily living aspects to this disease that the doctors just don't get; such as the physical appearance and extreme exhaustion.

See, the thing is; you don't really understand what it's like until you live with the disease.  None of us understand except Emily.  You really can't fully understand what it's like to parent a child with a chronic illness until you have one. 

"It's just arthritis."

My husband and I made this video because we had heard the phrase; "it's just arthritis" too many times. It's a good synopsis of what we have be dealing with in the past four months.

I made it because there are days when my mind tries to trick me; Emily seems perfectly fine and I wonder if the medicine isn't doing more harm then good.  Then I look at the pictures and video and remember back to the days in the hospital when I couldn't count how many doctors we talked in a matter of minutes and the two days when a doctor actually sat outside Emily's room and told me to come and get them if "anything changed". 

I also made it because I wanted to show Emily that she isn't the only child with arthritis and so we have watched video after video on You Tube made by parents watching this nasty disease take hold of their children and change their lives.

Rheumatologist

We had our bi-weekly visit with Emily's Rheumatologist and my suspicions were right.  She's been more tired then usual and I had a feeling as we were weaning down on the steroids the disease was becoming more active and labs confirmed this.

There are two different inflammation markers the doctor looks at; one tells if MAS is coming back and one tells us about SOJIA and how active the disease itself is. 

It's now I have to remind myself there is no cure only control through medication.  The medication she is on right now is Prednisone, Cyclosporine, and Kineret.  Kineret is the long term medicine that is supposed to control everything and eventual be the only medicine she takes.  Prednisone is like a band aid medicine, it's what she got in the hospital because she was so very sick.  Prednisone reduced the inflammation quickly and controls it very well, but the side effects are pretty nasty (think best case two hip replacements eventually) and can be life threatening if taken too long so we have to get her off it as quickly as possible. 

We found out yesterday her D-dimer, white blood cell count and platelet counts were all elevated which means SOJIA is still with her and becoming more active as we wean down on the steroids.  Good news was her feritin levels were low, not normal, but not 24,000.  Normal is around 60, Emily's now is a little above 100.  In the hospital with MAS they were 24,000.  So anyways MAS is under control; SOJIA not so much.

I'm worried it's not working as well as we wanted it to, but happy we can try a different medicine.  This one is given via IV in the hospital twice a month.  They can also do labs at the same time so if the IV goes in well that means just two pokes a month...hallelujah!  There is a huge emotional toll that is being paid and if we can reduce that cost just a bit I will take it.  Let's just hope this new medicine works.