Summer fun...

Hot Summer Days!!

Haley at the farm!
Drew and Kagen had a blast playing in a rubbermaid full of water!

These two are going to be TROUBLE one day!

Update...

ENJOY!

Cute family picture at Haley's graduation... minus Drew being grouchy!

Loving her presents from Mammaw Rhonda and Cherie!

Haley getting her diploma from Mrs Potter (her teacher) and Mrs. Bennett (the principal)
Class of 2022!! I'll be 40!!

Cherie, Mammaw Rhonda, Haley and I

We went to the doctor this past Wednesday and Haley did great... once again. She did receive a remicade treatment, but I finally talked to the infusion nurse and Dr. M about some questions I had. First, we are going to wait 8-10 weeks before her next treatment to see what happens. If she is in pain or hurting, then I'll take her as soon as she needs it... if not, then she probably won't go back for awhile! She also had extra blood work done and today I got a phone call that they were all normal. The doctor did say to make sure she is taking a multi-vitamin. I need to call back Monday to make sure they did the celiac panel and that is what they were talking about... so I'm hoping. They were supposed too and I mentioned it more than once! I also talked to them about probiotics and they were very receptive to that idea. They gave me a few samples to try, so I'm anxious to get that started. I talked to them about the Prevacid also and they said that isn't something I can cut cold turkey so they reduced her from 30 mg to 15 mg for 2 weeks and then told me to see if that helps. My grandma told me she has heard from more than once source that almonds can reduce or stop heart burn/ reflux almost instantly so I may try that. She is also going to start on Fish Oil. I'm so happy that they actually listened to me and understood where I was coming from as a mom.

I need to clear this up too: Colitis and Crohn's are both IBDs. Colitis is just the intestines and colon where as Crohn's is from the mouth all the way through your system. When they did the scope she showed no signs of inflammation in her throat, so that is why they were saying she may not have Crohn's. Some Colitis patients still receive Remicade as a treatment.

My little girl also graduated from Kindergarten last week! I can't believe she is a first grader now. Their program was really cute.

Drew is great... loving being outside. He will be promoted to his blue belt in karate on June 17th!

Med...

So, after not taking Prevacid (for acid reflux) for a week or so... Haley had to start taking that medicine again this morning. I noticed that her breath was really stinky last night and this morning. That was my first indicator. I'll keep you posted.

I blog...

Because... I can vent, inform people about what is going on in our lives (without repeating myself 100 times), and to be able to print everything out in the future. I have family and friends that live across this country who like to know how Haley is doing and what we are up to. I guess I've offended a few people who have read my blog. Not my intention at all. I've never mentioned names! I guess if you are feeling guilty then it might be you, but maybe not. If you question something I've written then all you have to do is ask me. I love blogging and will continue to do so: GOOD, BAD, UGLY, and some USELESS INFO! Keep enjoying!

My Choice...

Some of you may think I'm a bad mom...
Some of you may think this is the best thing I've done...

This is completely MY decision!

I'm taking Haley off of her medicines! I am watching what she eats and sticking to the diet because that isn't hurting her liver.

I haven't heard anything from the doctor's about what is going on with Haley since our last appointment and yes... I'm furious! I'd love to know what their plan of action is to figure out what is wrong with Haley. Our next appointment for Remicade is May 26th. Of course... that is the last day of school... that is field day... that is Haley's last day as a kindergartener. I tried to reschedule, but couldn't. The Remicade nurse was booked on Thursday, doesn't work on Fridays, Monday is Memorial Day, and is then on vacation for a week after that. So our appt. is at 7 am and no doctor is in the office at that time. I guess I won't get any answers then either unless they draw extra blood while they are inserting her IV. I'm not letting them stab her any more than needed! I'm DONE with all these excessive tests that give us the same results... NOTHING! I want more than anything for the doctors to tell me what is wrong with Haley but I won't let them poke, scope, scare, etc her when they can't give us definant results. We've been going through this for 5 years now... "why can't you give us some answers?!?!"

Now... I am making Haley get this round of Remicade because I'm hoping for some info about this round of blood work. IF... I don't get answers from that appt. then that will be our last for now. I'm not having medicine injected into her (anymore) if she doesn't have Crohn's Disease! I'm also keeping her on Miralax because I know that keeps her stools soft enough for her to have bowel movements. It is also an OTC drug. No prescription needed! That is it!

For now... I'm happy with this decision. I have prayed that it is the right one for Haley. I hope I have NO regrets and that I don't cause her more pain, but only time with tell.

As of today... she looks great! Most of the swelling is out of her body. Her belly has been looking really good that past week. She has complained 4 times since her last dr. appt that her belly has hurt however that is better than everyday! I've been writing down the date and what she ate everytime her belly does hurt. I was hoping that might give me some answers!

I'll keep you all posted.

I love my KIDDOS!!

Is it...

BAD...

that I'd rather sit in silence (or watch the news) while drinking my coffee vs. put on make-up and do my hair before the kids start waking up or arriving...

(Poor Adam and Stacy are the ones who usually can pick up on my choice!)