Saturday, July 12, 2008
Where to even start a post like this? Ugh.
Okay, so as a few of you know (and others have inquired), all is not totally well in the Ballard home. Our littlest man, our monkey, our giggly tub of chubby is sick. Not sure how sick just yet, but tests should reveal more info as of Tuesday.
For the past three months or so Layne has had a severe rash on his neck, underarms and groin area, his belly button isn’t totally healed and often oozes and he get the occasional crusty/red spot behind his ears. I’ve been to the doctor more in those three months with him than with both my girls combined, their whole lives. Honestly, we average at least one trip a week.
Anyway, I’ve been told so many things in that time span - “It’s probably heat rash”, “Might be from his acid reflux”, “We’re not sure what it is”, “Could he have allergies?”, “Lets try this cream”, “How about this oral medication?” – all without providing a solution to the ailment. We finally got an appointment SIX WEEKS OUT to meet with a pediatric dermatologist. Our poor little guy just got worse and worse. So last week, after a few days on an oral anti-biotic, I pushed the issue more with his doctor. “Oh, this looks bad," he says (like I haven’t been there every week of my life, practically) – “we need to get him into a dermo right away.”
And then, the bomb is dropped.
While at the pediatrician's office at 8:45 am, after getting home from work at 3:00 am and with my three small children in tow, he pulls out his medical journal of fun and says to me – “Here’s what I think it is and if it is, it’s bad. Really bad.” Every mom’s nightmare. I was calm, collected and cool until I got the kids in the car, sat in my seat and lost it. No explanation of what we might be dealing with. No support of my husband with me. Just a mom with three babies and the biggest blow of her life. Crappy choice of news breaking, if you ask me.
So what we may (or may not) be dealing with is called Histiocytosis X. And I did what any mother would do, I went home and got on the internet immediately. Not sure if it was my best idea, but like I could resist? Could be fatal, mediocre percentages of survival rates with treatment (I don’t care how good or bad they are, any time you throw in a percentage, the worst is on your mind), different stages & different outcomes. And rare. Like 1 out of 200,000 rare.
We had an appointment with a dermatologist on Thursday afternoon and he’s at a loss as well. He says he’s never seen a case of Histiocytosis, so no immediate diagnosis. Could be that, could be psoriasis, could be a wicked form of something else, could just go away, could be a staff infection, could be anything. Lots of pictures taken, cultures submitted and biopsies done and now we wait. Tuesday is the day - I’m both dreading it and wanting for it. But I’ll tell you what, the not knowing is the killer part.
The good news is, he's thriving (the butter ball is almost 15 pounds), he's otherwise healthy and doesn't show signs of disturbances anywhere else in his body (via first exam, of course).
Anyway, that’s what’s going on with us right now. We’re trying to stay positive and I really am making an effort to remember that it’s not a diagnosis just yet. I really do know that no matter what (even if it’s worst case), we can get though this as a family. Nothing in the world can make you appreciate the people in your life (family and friends) more than something like this. We've already been given so much support in this week - I don't even know where to start the "thank you's". Please just know that we are so unbelievably grateful and will continue to be.
And I’m sorry if some of you should have found this out sooner and not on a blog, but I’ve been too emotional to call people and discuss. Tears at the drop of a hat kind of a week. So please, be forgiving. I promise, when I know more and have a better self-state, I’ll be communicating better.
But for now, we wait, we pray and we hope. Fingers crossed for our little bug.
14 comments:
Evonne, sorry to hear about Layne. I hope that your doctors can figure out what is going on with him. I am glad he is doing well otherwise.
Evonne,
I just wanted you to know we are praying for you and your sweet family. Please let me know if I can do ANYTHING for you. I would love to have the girls come swim...You are in our thoughts and prayers.
My heart goes out to you, not only for having to help Layne get well, but for having the strength to share with everyone here. I'll be living in south jordan starting Saturday and until the first week in august. If there's ANYthing I can do to help you a little (take the girls out to let you rest, make dinner, wash dishes, or just talk) please don't hesitate to call me.
I am so sorry that you are having to deal with this. But I am so happy that you pushed the issue with your Dr. Thank-goodness for a mother's intuition! It took me almost a year to finally get my drs. to send me to a specialist for Taryn when she was having a really bad issue with diarehea, they told me they thought she had Cystic Fibrosis, but thank-goodness it was just a treatable intestinal infection. You are one of the strongest women that I know and that means that not only will you be able to handle all of this, but that since Layne is half you he will be strong too! I'm sorry I can't be of much help in the physical sence, but you and your family will be in our prayers.
Ohhh Ego. My heart totally sank when I read this. I'm so so sorry.Uggh your whole story made me so sick to my stomach with nervousness for you. We will be praying for you. I'm sure things will be okay and everything will be or get taken care of so your little guy gets healthy. We love you and please never hesitate to call and vent!
Dang, that is not fun. I hope everything goes well for you on Tuesday - we'll be thinking of you and your family. Please blog about the results so I can get an update! Take care and Hang in there! Us mommies need to be strong:)
I'm so sorry to hear you are having to go throught this. Regardless of the the diagnosis, it makes for a very difficult time in your lives. Kim let me know what was going on last week and you've been in my thoughts and prayers ever since. He is such a beautiful boy. He is so lucky that you are his mom and are so devoted to getting him well. My prayers will be with you tomorrow. Please let me know if there's anything, and I mean ANYTHING, I can do to help.
WOW, my heart just sank into my FAT tummy. I will pray and hope that all goes well tomorrow and you get the results/diagnosis you need to help your heart and mind relax. know you are loved and supported.
Evonne & family,
I'm so sorry to hear about this. What a great ordeal you and your family have had to experience to get this cute guy to get better.
If you need anything let me know. Your family is in my prayers.
I am soo sorry. Your cute little man will be in our prayers. We love you guys and hang in there. Let us know if there is anything we can do.
Keep your head up girl! We are for sure praying for your cute family. If you need ANYTHING please CALL! I am SO close to your house so if the girl's need to come hang out, Bri would love it. Our prayers are with your family. Bless you all.
Clough's
Evonne, The first thing that comes to mind when reading this is a scripture in the Bible in James chapter 5 verses 14:15.
I hope turning to the scriptures and the Lord helps to lighten such a heavy burden.
Heavenly father sometimes teaches us through our own children the depth of feeling a loss of a child.
Only to draw us closer to him just like Abraham but the blessings from such a test are the most remarkable and rewarding.
We wish you the best tomorrow and hope to see soon.
p.s If I knew you were going to be at the baseball game I would had come. I thought you were working nights and so I didn't go.
Oh Ego-- I am so sorry that you have to go through this. Hopefully this will make you feel better (my list of misdiagnosis)
Ty- Down's Syndrome
Ty- Lymphoma
Ella- Blind in right eye
All WRONG! My prayers are with you and baby Layne and the doctors.
Oh my heavens... i feel so horrible. I have been totally out of the loop. i am such a bad friend. Please let me know if there is anything I can do. Our prayers will be with you guys.
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