Thursday, December 12, 2013

If I only knew then...what I know now.

One of these days.. I will make myself sit down and go over all that has happened over the last few months. I haven't been updating because I am so busy with my 3 girls (although, I wish it was because I had nothing to say.)

I will say that at this point, I wish we never had the colectomy. I wish we would have pushed further and tried more medications. I know once UC patients get to a certain stage in the disease, that there isn't anything left to do but remove the colon.. however, I feel that I was so uneducated on various methods that are out there at the time that I felt as tho I had no other option. I fooled myself into thinking the colectomy would be our saving grace, and that it would allow Alexis to live a NORMAL, HEALTHY life... because, like they say..she would be CURED! Unfortunately, it has only lead to a whole other slew of problems. More surgeries, PTSD, anal stenosis (that includes at home dilation done by yours truly :/ ) and long term antibiotics.  We are currently hoping and praying we aren't dealing with Chronic Pouchitis.

If anyone has any immediate questions, email me. I will respond and share as much info as I can.


Until next time!


Wednesday, October 2, 2013

1 year 3 months post total colectomy

Sorry for the serious lack of updates. As a mother of 3 kids (Alexis will be 7, Kyleigh is 3 1/2 and Kennedy is 6 months old) , I can never find the time to sit down and just write without someone needing something -- and by the time I can get back to it, I can't collect my thoughts enough to make any sense! I am always up to answer any questions via email...ANYTIME! I may not update, but I am always checking in :)


So, lets get down to business.

Alexis has been doing fabulous for the most part. She averages about 5 bathroom trips a day, and manages to sleep all night! We are not giving her any medication besides a probiotic (VSL #3) and she can eat everything besides popcorn, as it causes major stomach pains! We have also limited the sugary drinks as it also upsets her belly, and milk at bed time is a huge NO-NO. She was having some problems with incontinence overnight and we finally figured out that milk played a huge role in that. We took away the milk, and the accidents stopped. She still drinks it throughout the day and handles it just fine.

A few weeks ago we took Alexis and her younger sister to Kings Island.  I was worried how Alexis would handle it since it was so hot out and I didn't know how all the walking would affect her body. She did great! We made sure to keep her hydrated and she had a blast the entire day. When Alexis had her colon and her UC was active, we could never do anything like this! It was so nice and I can't wait to do it year after year.

Forgot to mention that Alexis started first grade, and is surpassing her grade level in nearly every subject! I am so proud of her with all of the school she missed last year. She is so awesome!

Just wanted to give all of her followers an update. I apologize my post is all over the place, but I desperately wanted to update while keeping my kids in line. ha!



Friday, July 12, 2013

You're beautiful baby from the outside in


This picture makes me an emotional mess. Just seeing her "before" picture brings back the painful memories of all that Alexis went through, as well as my family. Totally not fair, but she dealt her hand of cards like a champ-- and came out on top.







Sunday, June 30, 2013

Updates!

Alexis is doing great! She is currently on summer vacation, and anxiously awaiting what first grade has to bring. Despite all of the school she missed during Kindergarten, she is still at nearly a 2nd grade reading level and is reading anything and everything she can get her hands on!

We are in the midst of battling her first go round with pouchitis. Bad stomach pain at the beginning but once I got her to the hospital and on the antibiotics, she did a complete turn around fairly quickly! Just a few more days left on her meds, and she is good to go. Hopefully we don't encounter it again for a looong long time!

I will leave you all with an updated picture. Look how good she looks! To all of you parents out there who think getting a colectomy is the end of the world: its not. Alexis was so sick and the j-pouch has seriously given her life back!



Thursday, April 18, 2013

Happy and Healthy.... :)




http://www.buzzfeed.com/summeranne/24-small-meaningful-acts-of-kindness

Alexis is #17 in this article! It's amazing to still come across articles regarding all of the Reddit love she received! They really lifted her spirits after her operation(s).






Tuesday, March 26, 2013

NO news is good news!

So, I sincerely apologize for the lack of updates. There just isn't much to say when things are going so well. According to my web stats, I am still getting several hits a day... so if anyone has any questions on anything.. please feel free to ask!

Alexis is still symptom free. The only medication she is prescribed is a probiotic and she is growing like a weed! She is above average in nearly all of her school subjects (which really surprised me considering how much school she missed out on) and for the most part she is always pain free. We are still dealing with the all mighty butt burn on occasion, but it is not nearly as often as it was in the early days. We also deal with random episodes of painful cramping, but that is also to be expected. Most of the time, taking a breather helps out. Other times a dose of tylenol is needed... either way, she is still happier now than she was 6 months- year ago.

Since my last update, my family welcomed our final member!

Meet Kennedy!




I am off to do some cleaning for this upcoming weekends festivities. I hope you all have an awesome Easter!



Thursday, January 10, 2013

2013 Take Steps!

Alexis and our family will once again be participating in this years CCFA Take Steps, Be Heard Walk for a cure. Last year Team Alexis raised around $1500.00, and we are hoping to surpass this for 2013! Alexis is currently "cured" of Ulcerative Colitis, but she will always be a member of the IBD family. I want nothing more than a cure to be found so other kids like her can live a normal life without undergoing the numerous surgeries to remove organs!!

If you can help us out in ANY way, we would appreciate it. I hope we can raise over $2,000.00 this year!!

Personal Page URL: http://online.ccfa.org/site/TR/2013TakeStepsWalk/Chapter-CentralOhio?team_id=120353&pg=team&fr_id=3821


Can you believe she is already back in school? 7 days post op and she was begging to go back!

Sunday, January 6, 2013

Going home!

Post-op ileostomy Reversal
Tomorrow!!

I am so excited :)

Alexis has done SO well they feel comfortable releasing her just FOUR days post op! I was not expecting (yet hoping) that we would be leaving so soon. Her tiny body bounced back quicker than I imagined and you would never guess that the girl JUST had surgery! She has only requested Tylenol twice since being taken off of the pain pump. Such a trooper!

The only requirement we must meet before being discharged is meeting (once again) with the G.I department. I will get to discuss how we will treat Alexis from here on out. Not sure at this time if they will request probiotics or anything of the sort-- but we shall see! I will update again within the next few days!

My little J-Pouch Beauty Queen--first post op meal!

Thursday, January 3, 2013

Today was the day!

Takedown went great. No more ostomy!!


Alexis is currently resting comfortably. No NG tube (yay!), no catheter, she is on a manual operated pain pump instead of a continuous drip of morphine and she has already made it to the playroom  today!


She is pretty amazing :)


Will update more later. Thanks for checking in!

Saturday, December 29, 2012

5 days till takedown...

Christmas Morning
Alexis has been getting random cards over the past few days that Children's Hospital has been forwarding to us. I greatly appreciate them, however Alexis' surgery isn't scheduled until Thursday Jan 3rd! Once we are settled in the room, I will share all info as she really LOVES receiving them. Thanks to those of you who did send them, as we appreciate the thoughts as Alexis' take down approaches!!

Over the past week, Alexis has turned SIX!,lost one of her front teeth,  we celebrated Christmas and have been enjoying her time off  from school.