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!)

Update...

** I'm going to talk about poop and Haley would die (if she was older) if she knew I was posting this for everyone to read. I may also offend some people.**

Well... today was our first Doctors appt since Haley has been out of the hospital. Besides her receiving her normal Remicade treatment... I wasn't sure what to expect or say or ask. I had a few questions, but they seemed to change after I received some info from the test they did while in the hospital. First, I love Meg (she used to be the remicade nurse, but since has become a CNP under Dr. Maisel), however, I really wish Dr. Maisel would have seen us. Meg knows Haley (& I) really well though... so I guess they would both see us... together! Is that asking too much?!?! Anyway... All of Haley's biopsy reports came back benign which is wonderful! She does have collagenous colitis though. Defined: inflammatory conditions of the colon that cause chronic diarrhea. Why yes, she does have diarrhea because she has to be on Miralax everyday because of constipation?! Treatment: basically the same low residue diet that we are on now... which I can now handle! In rare cases, surgery. There are a number of medicinces that are effective now... which gets to my next point. She is off all the medicines prescribed in the hospital however... one new one was added today for colitis. Side effects: causes bloating... which is what sent us to the ER in the first place. Her belly has been bloated since she was an infant... I'm trying to get rid of all the excess gas... not make it bigger! From the colonoscopy, they found that her whole colon is inflamed. They also discovered that there is no evidence of Crohn's... great!? What do you mean... why have we been doing this for 3 years?! Can we come off Remicade... "no, not yet." They also found a possibility of her have Celiac Disease... great?! We were told that 3 different time between the ages of 1 and 2 1/2 at Riley. (They couldn't make up their minds because her blood work didn't match the scope results?!)PLEASE, PLEASE pray that it isn't celiac disease... I can't (can but don't want to) do the gluten free diet. It is awful and I pray that no one ever has to go completely gluten free. If they got enough blood from haley today then a celiac panel will be sent off for labs. No, I don't have to cook gluten free yet because if we have to get more blood work then they want the results to be right. No, she still has to get remicade until we rule Crohn's out for sure. I'm not sure when that will be. I picture lots more blood work for Haley and more scopes. I HATE this so much for her!! Please pray... I have so many questions for God, but my faith will not be shaken! I can do this with HIS help!

BEST case scenerio: Haley only has Colitis!
WORST case scenerio: Haley has Celiac Disease & Colitis!

PRAY! PRAY! PRAY!

*I need support. Haley needs support. We need support. I can't be her rock on my own with other questioning my every move as a mom. I understand if you have questions and I am more than willing to answer them to the best of my ability. DO NOT call me to tell me all the "worst" side effects and to question me as to what is right for Haley. If YOU have doubts then show up for a doctor's appt and question the doctors. Do not make comments about her "appearance" in front of her. Do not judge my decisions in front of her. Keep your mouth shut! Haley is just wanting to know why this is happening to her (& not Drew or her friends or cousins)! She is wanting answers just like I am. I hate to see her cry and her confidence knocked to the ground. She doubts herself when you doubt me. Yes, there are certain things that she can't eat... don't pull out her (past) favorites and eat them in front of her. Don't offer her stuff "accidently" that you know she can't have. If you have questions... ask me first... please! Don't make her feel more upset than she already does. Do Not tell me what is best for my daughter!*

I will keep you posted as I find out more.

One last thing... her headaches came back the last 2 nights... so I'm taking her back to the eye doctor tomorrow. Dr. Mike told me her eyes would change a lot in the first year, so I'm hoping that is what the problem is.