Kinda bummed today...

So Wynonna's specialist comes up every 3 months at the specialty clinic for a few days. She had an appt with him yesterday due to the fact that she doesn't seem to be getting any better. He thinks we need to go back down to Portland (6 hours away) for another colonoscopy. Since coming home from her July hospital stay in Portland she has been back and forth. It seems like everytime they cut the steroid down she gets really sick. The problem is that she has been on steroids for a period of almost 8 mos now (give or take a week in between) and she cannot continue to be on steroids this long. Dr Integlia is not sure what to do at this point because she can't continue to take steroids forever, but if he takes her off them she gets very ill, very fast. So, he wants to take another look at her intestines to compare with the results from the one she had in July to see if they are better or worse. Also to get a look down below the transverse colon, because during her last colonoscopy it was damaged so badly there, they were worried if they went any futher than the transverse colon with the scope that they would perforate her intestines. So he gave me the weekend for our family to figure out how we are going to accomplish it this time. We live in such a small rural area that there are no GI doctors up here, so therefore he insists on having the colonsocopy done down there. My husband just got done taking his week and a half vacation time from work so that he could repair our leaky roof, so he won't be able to take time off. I have been fighting with the school because Wynonna has only attended 2 days of school in the last 2 weeks. They want a Dr note stating she is sick explaining why she missed school, then they want another note stating she isn't contageous before they will let her go back to school, then they want me to sign a note giving my permission for them to request medical info from Wynonnas doctor. I got all of the notes, but I really am not happy about the note requesting medical info from her dr, not that I have anything to hide, but because shouldn't a drs note written by the dr be enough? Oh well, they got what they wanted anyway. Wynonna and I were planning to work the seasonal potato harvest for her to earn her money for Drivers education and me to earn money for some furnace repairs, but since she is sick that is ruled out. I know that things could always be worse, i am grateful everyday for what we do have, knowing that there are others that arent as lucky. But just still kind of bummed out today a little bit.

I am so sorry Kelly. You are truely handeling this so well.. I will be praying for her.

I'll definately be keeping you in my prayers too

I am so sorry. This must be very tough

Maybe this will cheer you up for a moment or two. . .

When the going gets tough, the tough listen to John Prine

Hoping for better days ahead

I dunno, its just hard. A teenagers life is not supposed to revolve around Dr visits,hospital stays, taking enough meds to kill a horse, etc. She's going to totally miss out on what should be the most fun time of her life. I have to selfishly admit that I am tired of all the Dr visits, appts, bloodwork, specialty clinics,remicade treatments, etc, and that is only for Wynonna. I have a 15 yr old son, Jayson who has ADD which means appts to monitor his medication and alter the dosage if need be, and he also attends counseling once a week to try to deal with issues stemming from the kids father ( though I prefer to call him their biological sperm donor) This is the first morning in weeks that I could actually sit and have a coffee and not have to make phone calls to deal with updating Wynonnas condition, or making appts for either of the kids, or actually leaving to take either one for appts, lab work, etc I know it sounds stupid, but coming on here is one of the things i really look forward to , even if it's for a few minutes a day, also signing up for samples or PTs also gives me something to look forward to, something else to think about to distract me. I don't know how parents of children who have illnesses even worse than Wynonna's do it. I know you do it because you have to, but it is very draining and you start to just feel like a shell of a person, you know?

of course we understand. And what you are feeling is very normal! heck, I dont have a sick kid and I dread just going in for shots, cause I know its a awful long drawn out ordeal. And your right, She should eb enjoying the hell out of her high school years. And I hate that she cant.

I really think that the fact that you are holding it together is a miricle. I am not sure I could.

Kelly, I'm so sorry that you're in this predicament. Everything you've said about how overwhelmed you feel is perfectly understandable. I feel annoyed and overwhelmed over little day to day problems like the kids all having colds. Yes, there are always people worse off than we are, but that doesn't make it all peaches and cream to have a very sick girl, to have dozens of appointments and treatments and a looming hospital stay hours away from your family. And it certainly doesn't make it any less of a financial hardship either. Don't feel guilty about not handling things like the perfect person. Perfect people don't exist. Real people have real feelings: anger, depression, resentment, and despair, as well as love for our children.

But as far as Wynonna supposed to be enjoying her teenage years goofing off with friends rather than being sick, don't worry. For every kid who loves being a teen, there's another who's miserable being a teen. She WILL have time to enjoy life, to goof off, to be a kid... even if she's thirty before she gets a chance. I had much more fun after I got married than I ever did in high school.

Did you ask the doctor about gluten or another dietary allergy? And maybe (when you are slightly less overwhelmed than you are now) you could take Wynonna to an allergist and have her tested for food allergies. I know the medical card covers it, because Zaven's covered his. And if altering her diet could give her even partial relief it might be worth it.

Awww, the poor thing! I'm sure all of you are ready to have the whole ordeal over with. Hopefully you and the doctor can come up with a plan to get her off the steroids and staying healthy.

I'm sorry, I'll keep ya'll in my prayers.