Thursday, September 27, 2012

7 days..

so the countdown begins...
Alexis right before her first practice!


Seems surreal that we are getting ready to go down this journey again! Alexis is doing so well that I wish we could just wait. Life with an ostomy isn't that bad. But this is what she wants, so we are moving forward.

Alexis had her first drill team practice last night. She did so good! She was happy to be out there and she seemed to be glowing with excitement the entire time!! She will miss out on a practice due to recovery time, but I am hoping I can at least get her there to watch (since it will be post op day 6--and if all goes well she should be out of the hospital!)  I am hoping this is something she can stick with and keep up with over the years!

My nerves are starting to set in, but I am trying to keep myself busy. I have a TON of laundry I would like to get done within the week!

and as always, expect more updates in the next week (even more the days following her surgery!)

Tuesday, September 18, 2012

2 weeks...

..away from surgery. I can hardly believe it.

Seems like its been forever since the initial creation of Alexis' ostomy, but in reality we just passed the 2 month mark. I am thankful for all of the progress we have made, all the medications we were able to give up and for my daughters health back. My only wish is to fast forward through these next few months and these next 2 surgeries.

Alexis' GI appointment went great. Dr Boyle was thrilled with how well she looked and ordered some routine labs to see how her body was maintaining. I explained the problem I discussed in my last post and he wasn't too concerned. He doesn't want to treat it with any type of medication and we will see how it goes after her next surgery. I was pretty happy about that!

Alexis finally got over a pretty rough cough/cold/sore throat viral type sickness (seriously, it seemed like everything rolled into one!) this past week. Her output turned very watery and I was pretty nervous about her becoming dehydrated since everything seemed to pass through her so quickly (more so at school since I couldn't monitor her) but we made it through with no problems whatsoever!

Since my last post, Alexis enjoyed her first trip to the Renaissance Festival! She rode rides, enjoyed various attractions and had the energy to walk the entire time! We did have to make several trips to the restroom, but they were for me :) It was great! (check out the few photos I attached!)

The same day we went to the festival, we found out Alexis will be expecting ANOTHER sister! Three girls... hopefully I can keep my sanity ;)

One last thing: we will be signing Alexis up for Drill Team this week! How awesome is that?! She is so excited!! Practice starts in a week or so, I will keep you guys updated on how she does.

Thanks for checking in!

Thursday, September 13, 2012


Will be Alexis' first follow up appointment with her GI Dr since before her surgery. I am very excited to see him and share just how great she is doing. For so long, I explained to him I couldn't nor did I want to put Alexis through such a dramatic surgery, but I am so happy we did. I know you have heard me say it over and over again, but I finally have my happy go lucky 5 year old back!

The only concern I will be bringing up to him is the discharge Alexis is having from her bottom (tmi, for most.. I am sure.. but those who are dealing with IBD know that poop talk is NORMAL and expected on a nearly every day basis!! :) !!) Her ileostomy obviously bypasses her rectum, however it is still a living organ and secretes mucus and whatnot. BUT, Alexis' has been bloody since surgery (few drops or so). Not bad AT all, and she only passes it every few days or so, but I am very curious as to how he will treat it. I am hoping it is only temporary as I was so happy to get her off all medications. But we shall see. I think he will be very pleased with her overall progress!!

This weekend we will be finding out the sex of the new baby, as well as taking a family outing to a Renaissance Festival. So exciting! For so long we had to stay clear of anything that didn't have a bathroom in a 3 second walking distance, so it will be nice to be able to go out and enjoy it! Alexis will be able to ride rides, eat whatever food she wants and just ENJOY herself! I am very excited :)

Well, I think thats all I have for today. I will update after our GI appointment for those of you who are interested in what he has to say!

Wednesday, September 12, 2012

I will hug my kids a little tighter because of this..

I cry every time I hear this song. Although I didn't have to face a battle like the Mother of Ronan, I can relate on many different levels. So heartbreaking.. yet a beautiful song!