Not Feelin’ It

Mindy,
I have had chronically ill kids. I have also taken care of them when I worked at Arkansas Children’s Hospital – as did Mark.
I was in such denial when my own daughter Lydia was diagnosed with asthma and here I was a respiratory therapist. Then Jared comes along and he has not only every allergy Tennessee has to offer while in Jackson, Tn where he was born we found him to be allergic to peanuts – and HE TOO has asthma…and while we lived in Vegas I allowed him to be accidently exposed to peanut butter in a brownie because I wasn’t paying attention..he was only about 3 years old then. After we moved here he was so sick the first year I just wanted to move back to the desert. He is allergic to everything inside and out and not just peanuts but all tree nuts.
At least I knew what my children had, so I can’t compare to what you are going through and I thank God for turning me on to Respiratory Therapy as I worked as a nurses tech in a hospital.
I have been able to keep them for the most part from trips to the ER.

This is what a cystic fibrosis patient told me- her name was Robin and she was in her mid 20′s. She also worked at Arkansas Children’s in our department. She said “When one is chronically ill it is hard to tell when it is time to seek help for treatment and be admitted for a tune up.”
Here too she knew what she had. but when a child is chronically ill it is hard for a them to judge when it is worse sometimes ..much less for a parent to decide when to make decisions like you did the other day about going to the ER.

All I know is you pay close attention to the signs and do what you can do. and remember there are times plans will have to be changed (and it sounds like you are coping well with that as you mention above the road blocks) and things that your child may not be able to participate in or do but they will thrive in other areas. (for mine it was sports- neither Jared or Lydia like anything but swimming and rollar bladding and Lydia loves to dance)
Jared was soooo allergic to grass as was Lydia if they played in it – it appeared as if they had been cut by every blade that touched them.

When you have a sick child it causes you to slow down and do only what is really necessary. Sometimes that is hard when you want and need to do so much.
To Me Mindy, you seem to be handling this like a wonderful momma and the thoughts you have had are normal. My heart goes out to you and to little Libby.
Love you!
Julie

#1) There’s nothing wrong with getting worn down. #2) Don’t forget, there is a logical explanation for everything happening. You’re moving through the problem solving process, and its not moving fast enough. Fair enough. But don’t forget that you are still moving, even if not fast enough. You can do it.

Julie’s message is meaningful and I hope helpful to you. Thank the Lord for the pleasure of cooking! Just said a prayer for your girl.

Aw Mindy, I feel your concerns. I have a 26 yr. old daughter with special needs so I know all about those days of uncertainties!! I also have a younger daughter who suffered at least 3 yrs. with unrelenting stomach problems with no resolve. We had doctors say it was all in her mind, to wanting to take out her gallbladder to being toally stumped!?! By accident the doctors stumbled upon her problem…Sucrose Isomaltose Deficiency..a sucrose intolerance. As long as she avoids sugars & limits her fruit intake she does fairly well. It’s frustrating to say the least when one doesn’t have a definitive diagnosis. I’ve found it’s best to grab onto those days that seem near normal & bask in their pleasures instead of focusing always on the illness. It’s hard on us Moms to see our kiddos suffer though:( Praying for resolve for your sweet Libby and for her Momma too! Hang in there!!! P.S. I hear Cleveland Clinic has a great program for kids & GI problems…Just saying:)

I don’t pretend to understand what you are going through. Prayers for your entire family. Some of what you wrote reminds me of the story of the author of The Maker’s Diet. I have no idea if it is relevant to your experience, but I thought I’d share since it came to mind. Again, prayers for you all!

I know this was posted a few days ago, but this is my first opportunity to comment.

I found you through Michael Hyatt’s blog and have been praying for your daughter (and yourself). I can’t imagine the pain and struggle and telling you to “trust God” is foolish. You can trust God while being in pain.

It is encouraging that they are seeing something. Whether the parasites are the reason for her illness or something else; it is still good to know they are finding things.

Thank you for your willingness to share your story with us. I can’t imagine how hard it must be to type out your struggles to a world of strangers. The saints are petitioning God for your family. And those prayers always fall on open ears.

I can really relate to what you’re going through… I wrote earlier when Michael’s twitter post lead me to your blog… I suggested getting patient advocate services involved when bogged down in red tape with Vanderbilt…. and you liked that idea.

I’m still muddling through with my son at Vanderbilt. Have another appt with Doczilla today. I’m going to hang tough this time. I think her plan was to be rude and hopefully we would seek out yet another doc to help us, but I’ve decided to dig in my heels this time and force her to do what she can to help… she appears to be dragging out the process of making changes that might help in an effort to milk our insurance for max $$$. Hopefully today she will up his meds to the level that she says she has all of her other patients on. We’ve been trying to get help from Vanderbilt for a year next month with very little progress.

My son and I often feel hopeless… We wonder if he’ll feel like this forever… I wonder if he’ll be able to hold down a job, attend college, have an active social life while living with unpredictable pain…. We are both very saddened about the reality that doctors are not willing to seek solutions only halfheartedly treat symptoms… the reality that someone can enter a “helping” profession and not have compassion for their patients…. It’s so different than the way we’ve raised our son… My husband and I both volunteer countless hours to help families but when we were the ones that need help for our child we are treated like yesterday’s garbage that no one has the time to take out…. just passed around for someone else to handle…

Hi, I’m new to your blog, but I have used the medication you mentioned. I used it twice, and it did get rid of giardia for me. Sometimes it takes more than one dosage. I also believe in using herbs. Olive extract is suppose to be really good at killing parasites. You need to get the best one on the market such as Nature’s Way or East Park (which I prefer). I’ll be praying for your little one. Hoping for the best!