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Feeling Sappy

Excerpt from My Diary May 30, 2008

I went out to see Sex In The City and came home all sappy.

I went into the girls rooms and kissed them goodnight.  I fed their fish and fixed Carly’s wig on her stand … then I wondered why?

Why have both my girls been cursed with something that makes no sense?

Why do they have to suffer through injections, blood work, people staring.  Am I doing the right thing?

I remember the look of Joy on Carly’s face when she first put on her wig – her old personality was back!  For a moment that happiness erased any doubt … but it itches and it moves around … it fell off at preschool when she was playing dress up and no one helped her! My 5 year old had to pick up her wig and put it in her backpack, by herself.  She tells me the story like it’s ok, like she isn’t bothered by it at all.

For a long time I was just amazed by her attitude.  Now, I am still amazed, I’m just not convinced that she isn’t bothered by it.

I’m not sure how you learn to deal with this?  In the same breath I feel terrible for feeling so upset.  Afterlall, they are healthy when there are so many that are not so lucky.

Tomorrow is another day, another injection.

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Carly begins Methotrexate injections next week

Excerpt from my Diary: April 2, 2008

Carly will begin Methotrexate Treatments Next week.  Last Friday we went to Children’s Hospital Of Philadelphia. The girls have been patients here before but never in Dermatology.  Our Dermatologist spoke to a colleague of his who agreed to see us.  We met with a few doctors/nurses its all a blur.

When we left, I was terrified.  We were given packets of information about three drugs.  By the time we left we narrowed it down to two but they are not nice drugs.  Both are by injection and there is so much unknown.

Katelyn went to her pediatrician for her yearly well visit and her Doctor confirmed my gut feeling that we should choose Methotrexate.  Carly will have baseline tests done on Monday so she can start the treatment.

Carly lost so much hair and is continuing to loose it every day. I feel awful for her and pray that she doesn’t loose her rosy outlook on everything.

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March 10, 2008

Excerpt from my diary:

The girls had UV treatments today.  Carly has lost a lot of hair from the large lesions on her scalp.  The good news is that those large lesions are now gone.  My husband isn’t convinced this is Psoriasis and I am just not sure what to think.  I am exhausted and not sure how to handle this emotionally.  Right now my heart is broken for all they are dealing with.

Last month we traveled to Louisiana just as the girls were being treated for strep once again.  Katelyn’s “Spots” progressed and now we are doing UV treatments 3 times a week.  The drive back and forth (40 minutes) really keeps me running.  I feel like I never stop.  On top of the physical stress, I am emotionally stressed.  Carly has lost a lot of hair but in general the girls are doing great.  Carly isn’t bothered by it at all.  She picked out some pretty scarves for her hair but hasn’t decided to start wearing them yet.  We got her hair cut last week and managed to layer it in a way that hides some of the bare spots.

Katelyn’s spots are primarily on her belly and back.  She doesn’t say anything about it but I see her covering up with long sleeves to cover the spots on her arms.  Unfortunately she is starting with spots on her scalp.

All this aside, we are having fun.  Last month Katelyn and I went camping at the Franklin Institute.  At the planetarium we were able to see Saturn and she just loved it.  After breakfast we went to the Philadelphia Art Museum – her other favorite. – she is 8 and obsessed with Van Gough!

It was an exhausting two days but it was wonderful!

 

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January 16, 2008

Excerpt from my Diary:

In December, we went to Disney and had a blast!  We did a lot of great things but our Princess Tea Party was probably the highlight.  Carly was in awe.  She’s decided she must have a tea party for her birthday! Katelyn wasn’t as impressed as Carly, she’ll be 8 and is developing her own personality!

I’m concerned about Carly.  For 6 months, she has had a terrible skin condition.  It has progressed to large patches of skin peeling from her scalp.  I am so upset but countless Dr’s are stumped.  Physically, I am worried and exhausted.  Carly,  She is such a trooper! Tonight, combing the scabs out of her hair broke my heart.  We have been to several Doctors, and no one knows what to think.  I never thought I would have a doctor look at me and say they just don’t know.

What makes this so bagging is that Katelyn has “Spots” too!  She has them on her chest, back and legs.

Through it all, Carly is happy and sweet as can be.

 

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Week 3 of Methotrexate

Excerpt from my Diary, May 30, 2008

Katelyn and Carly are on weeks 2 and 3 of their Methotrexate Injections and doing really well.  Carly is already showing signs of improvement.  I’m still worried about Carly’s hairloss and what effects these medications may have on the girls.

I have been giving the injections and hadn’t expected that in my roll as MOM.