Thursday, August 30, 2012

As of 8/28/12...

Alexis is officially a kindergartner! She has been doing so well and the anxiety over other children seeing her bag has completely diminished! We started using the mini closed end Hollister pouches, and they are hardly visible whatsoever. :)

However, yesterday she did get a letter sent home for talking to much in class! Here's to a great year full of NORMAL kindergarten problems free of IBD!

Also- Alexis will be included in the December issue of the UOAA's magazine "The Phoenix" so make sure you keep an eye out for it! I worked SO hard preparing the article and I hope you all have the chance to see it!

Wednesday, August 22, 2012

Been a little while...

But I wanted to update everyone!

Alexis has been keeping me busy, as she is getting ready to start Kindergarten in a few days! She is VERY excited and can't wait to get back to school. She is anxious about going with the ostomy, but I have assured her she will do just fine! We will be using mini closed end pouches, so if one gets too full, she can pop it off and place a new one all by herself. I am worried about her leaking, but the good thing is I live literally right around the corner and could be there in a few short minutes. (The school nurse is only available SOME days, so I don't even want to try and depend on her being there) We will get through it , I am not worried! :)

Alexis and her Gastronauts!
I spoke with Alexis' surgeon and we will be moving forward with procedure #2 on Thursday October 4th! The good thing about this procedure is we elected to be part of a study to see if a bowel prep is necessary prior to surgery..and thank the heavens we have been selected for NO bowel prep! I think the bowel prep prior to surgery #1 was just as hard on Alexis as the actual I am very thankful that we get to skip on it this time around. Another plus is we will not be required to come in the day before! I think this surgery will be a million and one times less stressful than the last. I just can't wait to get Alexis through these next 2 procedures so we can put this chapter behind us.

Well, I must go. I have been working so hard on an article for The Phoenix (that will be featured in the December issue) and I find myself rewriting and adding things constantly! Gotta get it perfect as Alexis will be able to read this for years and years to come.

Thanks for checking in!

Monday, August 13, 2012

Bag changes...and leaks!

I apologize for the lack of updates. But, everything has been so "normal" lately, its hard to even find a few sentences to write in order to piece together an entire post! Today, I have something to rant about.

The time between bag changes.

I just cannot seem to get it to hold past day #2. I don't know what it is, but it seems every 2 days it starts leaking and we have to rush to change it. Her stoma is very odd shaped. Longer on one side than the other, and her belly is also more protruded on the tip/right side than it is on the left, so I attempted using the paste this time to hopefully get a few extra days in. (For those who are curious, we are using the Holister brand New Image wafers). It always seems to leak in the SAME spot, so I am hoping this works! The only good thing about changing it every 2 days is that I can make her shower with it all off and give her skin a break!

Alexis is just a few weeks away from Kindergarten. I must start working on allowing her to empty her bag. It seemed we had so much time to practice, and time seemed to have reallllly gotten away from me. I know she will do awesome, but I can't help but feel nervous and scared about this transition. I just hope we can start getting decent wear time in between bag changes so I don't have to worry about leaks! She is very excited to go, so I won't burden her with any of my worries. We will get through this and she will do great!

Thursday, August 2, 2012

Follow up with the Surgeon yesterday and..

Thought I'd share the little bit of *new* information I have!

Alexis had her follow up with the surgeon yesterday.. We discussed the next step and I explained to him that I would love to have both procedures done prior to March. He took a look at Alexis and seen how well she was doing and said that could 100% be done. He said if all went well, he would be comfortable completing her j-pouch by the end of the year! I wish we could finish the process with just one more procedure, but I know the 3 step will ensure that everything is healed and working correctly before we take the big step into connecting everything. I have no plans on rushing her, and will encourage her to let me know when SHE is ready. The surgeon said we could be back in as early as mid September. Not sure if I am 100% comfortable with going in that soon since Alexis will be starting Kindergarten at the end of this month.

I am sure there will be people who do not agree with how quickly we are moving forward, but this is what Alexis wants and what her Dad and I think is best for her. We want her to feel normal (both inside and out) as quickly as possible. She has expressed to us on MANY occasions that she is happy that she doesn't feel sick everyday, but she can't wait to get rid of her "big red spot".

So, keep the *encouraging* words coming, we could sure use them!