Tuesday, January 22, 2013

Facing up to the monster

So I have a few minutes to stop and think.  Of course what my minds first leads me to is my daughter, Jaedyn, who is 13 and was just this month diagnosed with Crohn's disease.  She weighs 70 lbs and is in the <1% for her weight in this age group.  Although she looks tall because of her skinniness, she is only in the 25th % for her height, which started out at the 75th% or better.  She is just starting puberty. 

Jaedyn homeschools because the stress of school makes her abdominal pains and anxiety worse.  She has trouble with the social realm of being a shy, sick girl in a private school who struggles academically.  She is much happier at home.  Academically she is doing fine, in my opinion, and is thriving with real literature like 101 Arabian Nights, Beowulf and soon will be studying Arthur and the Knights of the Round Table.  A couple years ago she had some neuropsych testing and found that she doesn't learn well auditorily at all.  I think this was her biggest struggle in the realm of a regular classroom.  She couldn't take the information presented auditorily at the front of the classroom and process it into words on a sheet of paper (notes).  She also had problems keeping up with written notes on the board getting put down into written notes into her notebook.

This week, Dr. Wilson, the pediatric GI doctor called and had a conference with myself and Jaedyn's pediatrician, Dr. Schramm.  They want to start her on prednisone.  Frankly, I'm freaked out with the side effects of all the Crohn's meds.  I wish I could see into the future.  Will the meds help her overall in the long run, or will they hurt her?  Will she become dependent on them?  Will she ever be able to maintain as well as she is now (which isn't good) without them?  Will they help or will they hurt?

I hate that there is no good cure for Crohn's disease.  I have no one who is giving us hope of a healthy life - only of remission for weeks or years, with the fear that one day, without reason, it could relapse and she'd be back to square one in a matter of days, maybe worse.

I read books about Crohn's and diets.  They all seem so contradictory.One says low fat, one says low carb, one says all natural/organic, another says use supplements like Ensure or Boost.  Ugh!

I guess I have to go back to the Person all my hope comes from, and that is in the Creator Himself.  He knows Jaedyn and this health problem that she has.  He is the Healer.  He may use the meds, or He may choose to heal her silently like He did for my other daughters, Eliana's scoliosis and Ciara's seizures.  Lord, help us.  This is too big for me, and I feel paralyzed with fear of making her worse.  Only You know the perfect cure for her sick body and emotions.  Help me make the right decisions.

4 comments:

Melissa said...

Prayed for you all as you seek out what to do. So thankful for hope.

JoAnn said...

That has to be so hard, and I'm so sorry for both of you. I am agreeing with you in prayer that the Lord will show you the best way to take care of her.

Anonymous said...

Brett and I were talking about wanting to get together with you and Tim and I realized I haven't read your blog in a while, thanks for sharing, we are praying.

Farrah

John said...

Hi Carol, sorry to hear about this sickness striking your family.