Living with a chronically ill child.

Anna

This is a more personal blog entry for me. I'm only writing it because I don't keep a journal anymore so this blog has become my journal of sorts. I have really been wanting a place to express my feelings. Maybe it will help stop my subconscious from giving me bad dreams.

Anna has been sick since her first month of life. She was hospitalized for about a week because she wouldn't eat and was projectile vomiting anything I managed to get her to take. They said she had sever reflux and put her on some medication which did help. For a while...

By her 4 month check up she was loosing weight instead of gaining it. None of her doctors could tell us what was wrong. She was poked and prodded almost daily. Being so little they would take blood samples from her tiny heels and they could only take a certain amount each day so we would go back several days in a row let them stick her baby foot and squeeze blood into the tubes drop by agonizing drop. The only comfort I could offer was her pacifier so she has been my only baby to keep a pacifier past 9 months. Trust me it is much easier to break them from it at around 6 months.

At 10 months old with still no medical answers Anna began to thrive again. The answer we were given for this delightful development "Sometimes babies just go through those stages and we don't know why". Nice!! However, I was prepared to enjoy a normal life now.

Anna's life has been anything but normal unfortunately. She has continued to have these "stages" where she looks too thin and has never had a normal appetite. She needed physical therapy at age 2 because she couldn't run. Anna had frequent tummy troubles and was diagnosed with a sever peanut allergy at about age 4.

Last summer was the first period of time that I was not working and around Anna every day, day in and out. It only took a few weeks for me to notice that her eating and bathroom routine were concerning. We began to see another specialist (at the recommendation and prompting of a good friend who's child is severely ill). You can imagine I was not very excited to go down this road again. I just really had no faith in Dr.s being able to provide answers, but Anna couldn't outrun children 2 years younger than her. Jessica (3 years younger) could out bounce her on the trampoline. This just wasn't right.

It has been agonizing again. Having to track every bowl movement, hiccup attack, tummy upset, headache and throw-up burp has just sharpened my awareness of how horribly sick my little Angel has been. It makes me feel like an awful Mommy. How could I let her live almost 7 years of her life feeling so miserable.

Unfortunately the answers were slow to come. Once again she was subjected to a battery of being scoped from both ends, blood work, stool samples, barium swallows, the list and medical bills go on and on. During the testing phase we knew she has a horrible reflux problem and an inflammation in her large intestine. So, she began taking medicine to help. When the meds didn't do much we were bumped to the next level, which means more expensive.

At the end of March despite all of her super drugs Anna came close to death for the second time. There was no reason to hospitalize her as there was really nothing more the doctor could do, but I watched, stressed and recorded daily as she lost weight, lost hair, lost her smile, grew heavy bags under her eyes because she would wake in pain several times a night, lost her appetite due to the 10 canker sores she had in her mouth and throat, she had blood in her stool and sever pain in her tummy.

Pic. taken at beginning of April while she was so sick. She couldn't even muster a genuine smile for pics and had visible bags despite the makeup.

The turning point came at the beginning of May. We asked for a family fast that first Sunday. Before the end of that first week we had some answers. Anna had her 3rd allergy testing and instead of coming back negative to everything again (except the nut allergy confirmed via blood work) Anna came back allergic to 35 things.

Our journey isn't over and I don't think it ever really will be. The reflux will need to be medicated her whole life. She was so sick that she is still on a steroid (though we have begun to lower her dosage and bring her off). Her little body has been nutrient deficient most of her life and long term consequences to that are something I haven't been able to bring myself to research. The latest blow came last week as we tried to refill her steroid, we were informed our insurance never should have covered it and it was going to cost us $1,000 a month going forward. After some stressful time spent on the phone I was able to get some samples from her Dr. I'm hopeful they will last until she can be off it.

I know things could be worse. I guess I'd just really like to say that things could be a heck of a lot better too. There are countless hours spent managing my daughters health and care. I'm sick and tired of people telling me "oh, it's allergies...she'll probably outgrow them". I'd like for those people to tell Anna that when she cries about not being able to eat at a friends party or our family dinner. By the way according to her specialist Anna will never out grow these.

I could and did go on and on with my complaints (thankful for a delete button). What I want to say tonight more than anything is that Anna is worth it. Her life fills mine with much more joy then sorrow. She is a strong, brave and wonderful person and I'm so thankful that she is mine.