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.

Reflecting..

Alexis and Sparky the dog at a visit with Santa!

A year ago, right around this time Alexis started flaring. At the time I figured it was a normal flare that would be controlled with a round of steroids. Obviously, I was wrong.

Our lives felt as if they were spiraling out of control over the next few months. I became obsessive over Alexis' lab results as we found ourselves in and out of the hospital receiving blood transfusions, Remicade infusions -- and @ 10 mgs/kilo (which is the absolute max dose they will give someone) every FOUR weeks (but they prefer you to space them out to 8 week intervals). Nothing was working. "Colectomy" was being thrown around FAR too often..

...and.. you get the idea..things were just not. good.

I never thought we would come near the end of the tunnel...I felt like we were forever trapped in a dark hole. I felt as if Alexis would never get better....and  I never looked at the surgery as our saving grace, but more as a last resort that we were forced into.

But, July came and went and  we made it through surgery #1. Shortly after Alexis became a poster girl for IBD all over the web! Cards came flowing into NCH, and we seen her on several front pages of major websites. The out pour of love was simply amazing. Not only did she receive well over 500+ cards from complete strangers, we were getting the word out on just how serious UC and Crohns was. I have talked to so many people who hide their disease from the world, as they are scared to talk about it. I think the more attention we bring to IBD, the better. .. Everyone seems to know someone who suffers from the chronic illness, yet so many people have no clue what it all entails. I would like to think Alexis helped break down the wall, and make discussing IBD a little less 'taboo'.

A week post op from surgery #1, Alexis' was better than ever. Her body seemed to thrive without her colon. She was happy and having an ostomy did not bother her at all. She was off of all medications and we could get out and FINALLY do things again as a family.

A few weeks after the surgery, we found out we were having another baby GIRL! My husband and I have dealt with several "unexplained losses" over the years, so we were absolutely thrilled to add yet another little beauty queen to our family.

In October, we made it through surgery #2. Healing time took a few days longer than we had anticipated.. but there were no problems and Alexis did great.

And now, here we are. Alexis is turning SIX in just 4 days, Christmas is less than a week away and the FINAL surgery is in 2 weeks.

.. My point is, the last year has been trying. Enough to throw ANY one into a deep dark depression. We all managed, and came out somewhat better in the end. We also have so much to be thankful for. Things have been slowly on the up and up, and I didn't see how it could get any better until after the final surgery..


but, I was so so wrong!

I received a call mid morning yesterday regarding a dream request that was submitted on behalf of Alexis to the Sunshine Foundation who deal directly with kids who have chronic illnesses. (I submitted hospital records and letters from Alexis' Doctor a couple months back, and then.. It completely slipped my mind.) I was absolutely shocked when she told me they had moved Alexis to the official waiting list and wanted to call and let me know. I was speechless. A rush of emotions came over me, and I of course started crying and thanking the woman. We had wanted so badly to take Alexis on vacation, but with everything that's gone on over the past year... financially we just could not do it. Alexis would ask us constantly when we were going to Disney World, and we would tell her in a couple years (not even knowing if that was possible).

She explained that our family would be sent on a five day/four night trip to Florida. This vacation also included: room and board in one of their many themed homes (or "cottages"), car rental, tickets to Disney, Universal, Sea World and Lego Land! They were even going to give us additional funding to cover the cost of food! Simply Amazing. We would never be able to afford something so extravagant on our own unless we saved up the next 5 years! Florida is so expensive, and this is truly a once in a lifetime opportunity that I am beyond grateful to be able to experience with my little fighter!! It will be another year or so before we make it down, but that gives us time to save (as I want to be able to do the overpriced, way cool things in the parks as well!) and it also gives Alexis plenty of time to heal after her next surgery. We will also be traveling with our newest family member, so the older she is... the better!

I will update again...but I am sure it will be in 2013! Surgery is January 4th, so expect an update around that time.

To all my readers: Hope you have a fabulous Christmas with your loved ones and a Happy New Year!

The Phoenix December 2012 issue...

finally made it to my house!

so I of course scanned and uploaded it immediately! I wrote the article prior to surgery #2 and have been waiting (impatiently) every since I handed in my final copy! Very excited to share it with everyone :)


AND, my apologies for not finishing out my December IBD challenge. A very hectic schedule + being pregnant (and all the normal aches and pains that come with it) on top of being sick just was not a good mix!

Thanks again to my friend Michelle, who took the pictures of Alexis to include with the article! (check her out on facebook!)


Here is the text version of my article, just in case you wish to read, but are having problems with my uploads:

Alexis was diagnosed with Ulcerative Colitis in August of 2010. She was three years old.  I had never heard of the disease, and was very confused when the Doctor explained that it was a “chronic” illness. How does something like this happen to someone so young? She’s never even had an ear infection, but she has a badly inflamed colon? In my mind, I had imagined the colonoscopy coming back clean, and a round of antibiotics would clear up her issues.  I never thought I would have a sick child. As a mother, I was angry.  My husband and I shared the diagnosis right away with other family members and friends. Most had never heard of Ulcerative Colitis and immediately paired it with a form of IBS. I can’t tell you how much that bothered me!

          The next few weeks consisted of getting Alexis on a routine with her medications. Since she was so healthy up to that point in her life, she had very little experience taking any kind of medication. Most days we had to hold her down and force the medication down (and this took place several times a day!) During this time, I researched constantly. I wanted to know if there were any new advancements and I wanted to know what I could do to hopefully “cure” her. (I was unaware that it was impossible to cure unless a colectomy was performed for a good month believe it or not!) I felt that researching was my job, and I logged hundreds of hours in front of the computer screen talking to other parents and looking up various methods others used. I explained to anyone who asked everything I possibly could about IBD in general. 

          Alexis did fairly well on sulfasalazine for a good 2 years. During this time she encountered several flares, but we managed them with a round of steroids and she managed to bounce back. In December of 2011, Alexis started having the worst flare we had ever encountered.  We started her on another round of steroids and after a few weeks, we noticed very little (if any) improvement.  Eventually Alexis was hospitalized at Nationwide Childrens Hospital in Columbus, Ohio. We were hopeful she would return to normal with the help of i.v steroids, yet after 10 days she was still just as bad as the day we were admitted. The team of G.I Doctors decided to perform a colonoscopy and take a peek at her colon. I tried so hard to remain hopeful, but I already knew what they were going to see. I could tell by just looking at Alexis.

          Sure enough, the pictures came back and they looked absolutely horrible. Her entire colon was inflamed and covered with ulcers. We had 2 choices at that point in time. Start on Remicade (a biologic drug administered every 4-8 weeks) or move forward with the colectomy. At the time, Alexis had just turned 5 and I couldn’t imagine putting her through such a tough procedure.  But on the other hand, I had read about Remicade prior and the long list of side effects scared me to death. How was I supposed to make such a tough decision? I couldn’t believe we were at this point, so soon after being diagnosed.  My husband and I talked about it, and I spoke with the team of Doctors, and we agreed to give Remicade a fighting chance. I was (once again) hopeful. I just wanted to see my little girl better.

          The next few months included several blood transfusions as well as Remicade infusions (at the max dose) every 4 weeks. The medication helped to an extent, but she needed it way too often and we still weren’t able to pull her into full remission. During this time, I knew I needed to make a decision about the surgery. I would wake up some days and feel like it was exactly what we needed to do. Then I would think about it, and the thought of sending my daughter off was terrifying and I would change my mind. I wanted the Remicade to work so badly.  We met with Alexis’ gastroenterologist, and I explained to him exactly how I felt.  After discussing her case with the rest of the GI team, they were all in agreeance that we should move forward and have the colectomy.  I was no longer in control of the decision, it had to be done.  I was scared, but I was also so happy that I no longer had to think about whether or not to go through with the colectomy or not.  I know it seems silly, but it put me at ease and at peace with what was going to happen.  I immediately started researching and calling manufacturers requesting samples.  I knew that this entire ordeal was going to be tough, so I wanted to be as prepared as I could possibly be. I talked to many parents of children with ostomys and one parent suggested getting in contact with the makers of Gastronaut puppets.  Not only did they ship Sally for free to Alexis, they also sent me a book called “Unwanted Baggage: A Comprehensive Introduction Surgical Ostomies”. It helped answer so many questions I didn’t even realize I had. The puppet did wonders for Alexis. She was so proud of Sally and took her everywhere. Alexis wasn’t afraid to tell people about her impending surgery, and I would like to think Sally played a huge role in that. Alexis and I discussed Sally’s bag and her ostomy quite often, and she was excited to get “rid” of her Ulcerative Colitis for good.

          The nerves however came on full force the days leading up to the surgery. I knew what to expect, but not knowing how Alexis would react once it was all said and done that really bothered me. What if she resented me for doing this to her? What if she really had Crohns? What if there were complications? You can only prepare yourself so much. I knew that if we continued on the track we were on, things were never going to get better. We were going through with the procedure for all of the right reasons. I let go of all my fears and anxiety and did everything I could to make sure Alexis was comfortable and prepared.

          On July 11th 2012, Alexis and I packed up several bags and went off to the hospital. I will say that the bowel prep was probably the hardest thing she had to go through the entire week she was in the hospital. The nurses placed a tube down her nose that lead down to her stomach and fed her several gallons of some sort of mixture that would “clean her out”. It was very traumatic for Alexis, and I had no idea that it would be done like that. It is upsetting not knowing exactly what it going to happen beforehand. I was new to the surgery scene, so I didn’t even think to ask what kind of prep was going to take place. But, we made it through it through the night, and we were woken up around 7 am the next morning to prepare for the colectomy.

Around 930 on Thursday, the OR called for Alexis. Reality immediately set in. The nurses rolled her down to the OR prep center. They started hooking her up to O2 sensors, gave her additional iv fluids, medication for her to relax and the surgeon and anestheologist came in and talked to my husband and I through what was about to happen. Everything that happened between explaining and dragging her into the OR room was a complete blur. All I know is that once they took her down the opposite hallway of the waiting room, I felt as if my world was crashing down all around me.

During the waiting period while Alexis was in surgery, I couldn’t even describe any type of emotion I felt because I didn't feel anything. I was just lost. I napped and stared at the clock until our families arrived. The surgery itself only took about 3 hours once they got started. Originally we planned to do a 2 step procedure where they would remove her colon, create the ileostomy and the jpouch in one procedure and then reverse the ileostomy and connect the j pouch in the second. However, due to her inflammation, blood levels being so out of whack and the doctor not being 100% sure she has Ulcerative Coltis versus Crohns, he decided that the 3 step would be more beneficial. So we will be going back for procedure #2 in a few months as long as the pathologist confirms that it is UC in her colon (as the Dr confirmed there was NO inflammation in her small intestines he could see! -which would indicate Crohns) where they would create the j-pouch and then procedure #3 would be done a few months after that where they would reverse her ileostomy (basically close it up) and attach her pouch to the small intestines. This would give her the ability to hold stool and she would look and feel more normal! The j pouch is not a guarantee, but we are hoping that it is managed well and she can keep it permanently.

Once the surgeon came out to tell me how well Alexis did, I was over the moon happy, and the weight felt like it fell off my shoulders almost immediately. I felt like I could breathe again. She still had another hour to go in recovery, so we went to her room to wait for her arrival. The minutes seemed to drag on for hours on end, and I kept looking out the window to see if I could catch a glimpse of her being rolled down the hallway. After nearly an hour and a half wait, she finally showed up.

I had butterflies in my stomach. I was so happy to see her! She will still so highly medicated that she would only wake up for minutes at a time, but she knew she had surgery and she was happy to see all of her family members supporting her. The nurses were busy taking vitals, checking incisions and making sure she was doing okay, and I felt the immediate rush of emotions coming on. Her stoma was huge, the tube that now came out of her nose was even bigger than before , she was begging for water (that she was denied over and over again) and I really just couldn't believe that after only 2.5 years of battling Ulcerative Colitis, this is where we ended up. We were just THAT lucky.

The rest of the day is a blur to me. But I do recall she slept (alot) and itched herself nonstop (side effect of her pain medication), but she still looked better than she has in a really long time. (Believe it or not) But she made it through like a trooper, and was in no pain at all.

The morning following her surgery they took her off of the continuous drip of morphine in order to help wake her bowels and they put her on a pump. They removed her catheter shortly after, and then she walked about 10 feet or so from her room and managed to stay awake for a few hours at a time. Less traumatic than I had envisioned for barely being 24 hours out from surgery. Just 48 hours after surgery she was able to cut her pain med intake in half and she was able to get out of the room and walk! She walked all the way to the hospital play room that day, and we were all so proud of her.

Since Alexis did so amazing post- op, we were prepared to leave at just 5 days post op! One requirement prior to discharge was meeting with a WOC nurse to go over how exactly we would change Alexis’ bag and how to re-order supplies. I have no complaints regarding the entire experience we encountered, EXCEPT for this meeting with the nurse. Alexis was fitted with a 12 inch adult sized bag from Holister. I am sure every single one of you reading this is thinking “How absurd!” and I agree, one hundred percent. At the time, my husband and I had no idea what we were doing and decided to put all of our trust into everything she said. Well, to make a long story short she did a very poor job informing us as to what products were out there. We were under the impression we had no choice but to use a bag that basically hung down to my daughters knee, and the only product we left knowing about was the skin barrier powder for broken skin. Needless to say, we had a lot to learn on our own.

          But, other than that small bump along our journey, things have been great. I don’t regret one bit the decision I have made for Alexis. She is finally free to act like a 5 year old, and she is enjoying it pain free. My family and friends are thrilled with how well Alexis is doing, and she was able to start Kindergarten on time with her fellow peers.

We have scheduled her second surgery for October 4^th, 2012 and the final take down will be done towards the end of the year. We are hopeful things will go just as smoothly! We are expanding our family in March 2013, so it was important to me to have everything done prior to that date. I know life will be hectic with a newborn, and I want to make sure I can be right by Alexis’ side one hundred percent through this entire process. I talk to her about her upcoming procedures all of the time, and if she ever told me she wanted to wait (even if it was long term) I would do it for her. I think it’s very important to let her have a voice, and opinion on her medical issues. My family and I are very grateful to the staff at Nationwide Childrens Hospital in Columbus, Ohio. Especially to Alexis’ gastroenterologist Dr. Brendan Boyle who did everything he could to save Alexis’ colon and also the amazing surgeon, Dr. Benedict Nwomeh, who made Alexis feel better when nothing else could.

Day Three!

I may be posting a day late, but I still participated! I don't have much purple in my closet, so I went with the next best thing-- nail polish! The picture makes it look a weird color, but its a pretty vibrant shade of purple, surely enough to grab peoples attention! ;)

Hope you all are having a good week so far! I am hoping to compile a blog full of some of my favorite #PURPLECHALLENGE pics within the next day or so!

Day TWO!

#PURPLECHALLENGE

Alexis wearing her 2012 CCFA *Team Alexis* wrist band!

Obviously the last 3 are not part of the #PURPLECHALLENGE, but I wanted to share... look how healthy Alexis looks! Hard to believe less than 6 months ago we were dealing with blood infusions, Remicade and extended hospital stays!

Day ONE

#PURPLECHALLENGE

A purple ribbon on my wrist. I get asked all the time what the ribbon is for, so it has been a great way to spread awareness!!

IBD Awareness week starts tomorrow!

I copied this from Caringforcrohns.com!

Crohn’s & Colitis Awareness Week starts tomorrow and we are so excited to celebrate it with everyone in our IBD family!

What is Crohn’s & Colitis Awareness Week?

As a result of a federal bill introduced by Senator Harry Reid (D-NV) andCongressman Andrew Crenshaw (R-FL-4) passed in 2011, Congress declared December 1-7 to be Crohn’s and Colitis Awareness Week to educate Americans about the diseases and encourage people to join in the effort to find a cure for IBD. This resolution was passed in thanks to some great Senators and Representatives who cosponsored it including:

• Senator Thad Cochran (R-MS)
• Senator Jack Reed (D-RI)
• Senator Kirsten Gillibrand (D-NY)
• Senator Patty Murray (D-WA)
• Senator Chuck Schumer (D-NY)
• Senator Maria Cantwell (D-WA)
• Senator Richard Burr (R-NC)
• Senator Dianne Feinstein (D-CA)
• Congressman Rush Holt (D-NH-12)
• Congressman Pete King (R-NY-3)
• Congressman Tom Latham (R-IA-4)
• Congresswoman Carolyn Maloney (D-NY-14)
• Congressman Jim McGovern (D-MA-3)
• Congressman Jim Moran (D-VA-8)
• Congressman Charlie Rangel (D-NY-15)
• Congressman Dennis Ross (R-FL-12)
• Congressman Pat Tiberi (R-OH-12)
• Congressman Adam Smith (D-WA-9)

Why celebrate?

Crohn’s and Ulcerative Colitis impact millions of people nationwide. We don’t have to tell you how debilitating these two incurable diseases can be- the cramping, the diarrhea, the constant urgency, the food limitations, and so on.

Crohn’s & Colitis Awareness Week is celebrated to make people aware of these diseases and raise money to bring us close to finding a cure.

How to celebrate this year

A group of Crohn’s and Ulcerative Colitis bloggers are coming together to celebrate this year with a Wear Purple Challenge.

From December 1-7, we are going to wear an item of purple in honor of Crohn’s & Colitis Awareness Week. Whether it’s a shirt, bracelet, pants, socks, nail polish- it doesn’t matter as long as it’s visible and purple!

Each day, we are going to take a picture and post it on our blogs, Facebook, & Twitter to share with our followers to show our support of the Crohn’s & Colitis Awareness Week.

We are challenging all of you to join us!

Wear purple and take a photo of it each day and post it to your blog, Facebook, or Twitter with the hashtag #PurpleChallenge. At the end of the week, we’ll compile all the photos on our blogs to share with everyone.

Want to celebrate but can’t participate in our challenge?

Check out the Crohn’s and Colitis Foundation of America’s website for ideas- they have some great one’s listed for ways to participate in the week.

Happy Crohn’s & Colitis Awareness Week!

Rebecca (www.caringforcrohns.com, @caringforcrohns)

Sarah (www.myjourneywithcrohns.com, @SarahChoueiry)

Melissa  (www.detouredfashion.blogspot.com, @allbluezoo)

Louise (www.youngcrohns.tumblr.com, @sapphire20)

Kristen (www.kla-yeayouknow.tumblr.com)

Laura (@Ellee_hogan)

Tara (www.tarablackburn.blogspot.com)

Update!

Alexis and her little sister, Kyleigh, on begger's night!

Alexis' FINAL j-pouch surgery will be Thursday January 3rd, 2013.


Less than 2 months to go and she will be ostomy free.

So hard to believe!

Thankful

With it being the month of Thanksgiving-- I have realized that I am SO thankful for the great team of Doctors Alexis has been blessed with. They have been with us through the good and the bad. It is bittersweet that we are no longer required to see Alexis' GI Dr on a regular basis. He kept such a close eye on Alexis, and got to know her so well. He was the first male Doctor Alexis EVER let examine her (and felt okay with it!). We lost our pediatrician a few months back, and her and I both cried when she told me she was moving to the Cleveland Clinic. She had been with my family since Alexis was BORN! She also shared with me her own mothers struggle with UC, and I believe that is when we REALLY bonded. If I could, I would drive to Cleveland every year for my children s well visits. When you have a sick kid, you grow so attached to the Doctors...whether you like it or not.

 I can't even begin to show my gratitude to the surgeon who preformed such a major surgery on Alexis' tiny body. She was a mess prior to her colectomy and within days of the operation, we had our wild 5 year old back. He truly gave my family our life back.

Of course my list of things that I am thankful for is more than a mile long, but these Doctors are on the top of my list. I can only hope they realize just how much of an impact they make on all of their patients and their families!

It's been so long...

Day after her operation

..and I apologize! With the Phoenix article on Miss Alexis coming out soon, I have got to make sure I update regarding her latest surgery. I am hoping her story reaches thousands of people-- more so those parents who are in the beginning stages of the surgical side of treating their child's IBD. I still manage to get an email about once a week from  parents who stumbled across my blog . It's overwhelming hearing them compare our feelings and listening to them say things that I too had said myself in the beginning of all of this.

So, again.. my email address is tara.n.blackburn@gmail.com. I know I posted it a few entries back, but I wanted to post it again for any new people who come across my blog.

So, here we go.

My husband reading Alexis her cards

Prior to D-Day, I had spoken with Alexis' surgeon and decided to be apart of a study he was conducting. Basically, some surgeons think a bowel prep is necessary, while others do not. The bowel prep itself is awful. NG tube down their nose that pumps their tiny bellies full of medication that eventually flushes them completely out. I remember the nurses bringing in 2 gallons of this crap, and I was flabbergasted.  "Your really going to use ALL of that?!" The hours following that statement were almost as bad as the surgery itself. I went through the details of the actual prep in one of my first few blog posts.. but it was no fun. I was praying that we would be selected to come in on the day of surgery with absolutely no bowel prep (well, no eating after midnight.. but that's easy!). And, we got exactly what we had wished for: no prep! Let me tell you.. it made the thought of Alexis' going into surgery a million times easier. No sense in terrorizing ANY more than necessary.

We arrive at Children's Hospital around 6:30 am on 10/4/12. My husband, Alexis and I head straight up to the surgical wing and wait an hour to be called back to the prep room. Our surgeon came in, went over everything we needed to know (and answered all 5,000 questions I had) then the anesthesiologist came in and went over all his information. Shortly after, Alexis was wheeled away. Again, I was left with a pit in my stomach and had to fight back the tears. It was hard, as letting your child go into ANY operation is scary, but I felt more comfortable than I did the first go round.

This operation was scheduled to take roughly 6 hours or so. Great. TWICE as long as the first one. I felt like I barely made it through the last time, I didn't know how I would manage to stay sane for that long. Kyle and I went off to the cafeteria for some breakfast. We made it back up and waited (and napped) and waited until finally her surgeon came out.

5 days post op

Everything went according to plan, and he even made it out in an hour less than expected. Alexis was doing great and they had absolutely NO complications with her surgery. He explained to us that he moved Alexis' ostomy higher up in the small intestine and she now had a diverting loop end ileostomy instead of her end ileostomy. I would go into detail to explain the differences, but I tend to use random medical jargon that most people don't understand (unless you are a fellow ostomate!) I am hoping to find a picture to include in this entry as seeing it with your own eyes tends to make more sense. Her ostomy previously was thicker, and stuck out about 1 inch from her stomach, now it is about .5 inches in diameter and sits almost flush with her skin. Her surgeon went through all of the same incisions  so no additional scarring. I can almost guarantee that when she becomes an adult, they will be barely visible! They are already pretty small in size. Scarring may mean nothing to you or I, but I don't want her to feel uncomfortable as she gets older if she wants to wear bikinis etc etc. She is beautiful all the way around tho, so hopefully some scarring doesn't bother her.

Back to the surgery..

Alexis was pretty medicated on the day of the operation and the day after. It seems all she did was sleep. I was grateful because I can only imagine how uncomfortable she had to of felt. She was on automatic suction, and had a catheter-- so she didn't move out of her bed until about 2 full days post op. This operation was twice as long as the first, and it seemed to take twice as long for the anesthesia to really wear off.  I made sure she remembered to push her pump pretty often (she was also on a continuous drip) I was doing everything in my power to ensure the pain wasn't coming through.

Recovery wise, things took alot longer than I had anticipated. I went into this surgery, expecting the recovery process we had during the first operation. Alexis went in on a Thursday and released on a Monday morning. Her bowels woke up almost right away and her pain was so well managed she was only on a pain pump the first 24 hours or so. This time around, Alexis had an NG tube hooked up for a week, as well as the pain pump. Her bowels woke up post op day#6 and the NG was removed on day 7 in the morning (thank goodness, otherwise we would have had to do tube feedings) I tried so hard not to rush the recovery process, but honestly, I was going a little stir crazy..and I missed having my entire family under one roof! It was rough on all of us, however, looking back I know we were right where we needed to be.

Now, of course we had to run into some problems. Alexis had been on a strong antibiotic after surgery and she developed a yeast rash ALL over her backside. On top of that, she started running fevers out of no where. We were concerned of infection so the Drs ordered a fever workup which included: a chest xray (to check for pneumonia), a urine sample (to check for a UTI (very common after having a catheter placed) and blood samples to check her white blood cell count (which is an indicator for an infection). Everything came back normal except for her blood samples, but her wbc was only slightly elevated.

Infected IV site. Notice the burns? !

Then, a nurse came in to administer IV Tylenol via an iv port on Alexis' left hand. She had 3 ivs placed during surgery and the were only constantly using 1. Alexis was throwing a fit when they flushed it, however the nurse assured me everything was fine since it "flushed okay". So she hooked Alexis up to her medication, and left the room. Alexis was very upset when the nurse left and I went and closely inspected the site. (it was under the clear plastic bandages-- so I didn't have a good visual of it.. I was mainly checking to make sure her arm wasn't swelling!) No swelling. I could see around the iv tho, and it looked pink and I just knew something was wrong. I called the nurse in and told her to remove the iv. We did and sure enough, once everything was removed, you could see that the iv had been bad (and who knows for how long since it hadn't been used!) Over the next several hours, the injection site filled with puss, her arm swelled up and red splotches covered about 80% of her lower arm, and her arm itself was very warm to the touch. She also developed blisters (tissue underneath had burned, and it made its way to the surface). They were worried that she had a possible blood clot, but the ultrasound crew was so backed up, we were forced to sit and wait. I placed a warm cloth over her arm, and over the next several hours, the redness and swelling went away! A huge welt appeared out of no where the next day too. We continued with the warm compresses, and she was started on another round of antibiotics, and the fevers finally went away for good. I was very angry this happened, but it was a relief to know that the infection wasn't on the inside. Finally felt as if we were making real progress and we could work on getting out of there!

6 days post op. Craft time with little sis!

I really wish I would not have waited so long to update. I am jumbling my brain trying to remember certain details, and I am at a loss. So for now, I think I will call it quits. As I remember, I will come back and edit, or post more details in a later blog. Alexis' surgeon wanted to preform her take down 6-8 weeks from this operation, however, I requested that we hold off until the beginning of January. She has already missed a ton of school, the holidays will be upon us (as well as her birthday and her party!) and my husband and I just can't afford another week of no income.

My husband has an awesome job, and makes more than enough to allow me to stay home with our kids. However, there is no paid time off. He was forced to take an entire week off a few weeks prior to Alexis' surgery, and then he took a week off to be by Alexis' side after the operation. We pretty much blew through our savings during that time. In no way are we struggling, things are just alot tighter right now. It stresses me out because I am used to having a cushion to fall back on, and being so close to the holidays and all.. doesn't help. But we will make it through, Christmas will be amazing, as well as Alexis' SIXTH birthday. Financial woes just seem to follow anyone who is struggling with a chronic disease. I pray that what we are doing for Alexis now, secures her future even more. I hate the thought of her dealing with this for the rest of her life.. I don't ever want her to wonder "How am I going to pay for bills and/or the things I need on top of  medication and/or surgical operation". I would give up everything I had before I let that happen.

Other than that, things have been going great. Alexis is 23 days post op today, and things are great. She is back in school and back to learning her dance routines in drill team! We also learned that we are having ANOTHER baby girl in March, and although I had hoped for a boy.. I am extremely excited. :) Alexis can't wait to hold her and she is extremely excited that she will always be the "biggest" sister :) Life has thrown my family quite the curve ball, but we are back on track now. Once we get Alexis through this next operation, I pray for nothing but smooth sailing and distant memories of IBD after that.

Thanks for checking in. XO

Post Op Day 5 (I think..?!)

My days seem to be running into each other!!

I promise I will update as soon as I find the time. Things have been hectic, and honestly when I am not tending to Alexis-- I am exhausted and just want to sleep. She is doing better and we are hoping things start to improve for her. I have ALOT to write about, so keep checking back!

Thanks for all of the love, thoughts and support <3 p="p">

7 days..

so the countdown begins...

Alexis right before her first practice!

again.


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!)

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!

Tomorrow...

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!

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!

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!

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 surgery..so 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!

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!

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!

Good Day!

I was contacted by a member of Girls With Guts and asked to write a piece detailing how I have managed to stay strong throughout this entire process, below you can read my article.

As a mother of a 5 year old with Ulcerative Colitis, you would not believe just how many times I have heard people tell me “I don’t think I could do what you do, you are such a strong Mother.” But the thing is, it’s not strength and it’s not exactly like I had a choice, I am simply doing what I must do as a Mother to care and protect my child when I am forced with no other options.

Alexis was diagnosed at just 3 years old. My world shifted and I felt like I was losing control.  As a mother, I felt like I let my innocent baby girl down. Fitting in Doctor appointment after Doctor appointment, to making sure she received her medications on time (at one point I had to give her medicine to her ten separate times throughout the day) was all I could do to ensure she felt as normal as she possibly could.  Many hospitalizations later, I was given the option of Remicade or total colectomy. I wasn’t ready to put her through such a major surgery, but the medication had side effects that scared me to death. That saying “Mommy knows best!” isn’t always true, because I had no idea what to do. Her G.I Doctor talked with me several times and suggested we give Remicade a fighting chance, so we did. It failed.

July 12, 2012 was the absolute scariest day of my life. Alexis was forced to have a colectomy with a temporary ileostomy, and again I felt as I had failed her. The pain I felt while she was in the operating room is simply unexplainable.  Seeing her in recovery was also a moment I will never ever forget.  These are situations you never expect to happen as a parent, but when you are forced to deal with them you must always put your best foot forward and do it with a smile. So we did, and we made it through (sometimes, barely hanging on!). We were lucky enough to prepare Alexis for the transition which made it 100% easier on her. She knew that without the surgery, she would still be sick. She has taken the change so well, and I would like to think that my husband and I had a huge role in that.

So, to ANY parent in any comparable situation: You are allowed to cry, be angry, hurt or sad.  These are our precious kids we are talking about here! What matters most is that you are there for your children when they need you. Talk to them; let them know it will be okay; shower them with your love and attention.  As a parent, that’s really all you can do when you are left with no other options.  Walk tall and they will follow.

“You never know how strong you are, until being strong is the only choice you have.” 

You can click here to visit their site.

I was honored to write for them, and I am very excited to spread Alexis' journey with even more people. 

Now, today was a very exciting day for my family. I found out at the beginning of the month that we were expecting (thus , my lack of updates-- I have been sick..and just TIRED!) I visited the ob and had our first ultrasound today. This little guy (or girl) was there for Alexis' surgery, and made it out a-okay. Another little fighter. All the stress, lack of sleep (and food for the most part!) and here they are. Despite all the hurdles we have faced up to now, I know everything is going to be okay. Alexis is feeling good, and she is BEYOND ecstatic to welcome another sibling!

Happy & Healthy

Sorry for the hiatus. I have been feeling horrible the last week or so. Good news is Alexis has been feeling great! She has adjusted so well, I truly cannot complain. Even when I am feeling down about the situation, it  seems as there is ALWAYS someone there to remind me just how much of an inspiration Alexis has been to everyone. I checked my mail yesterday and there was a package from a man in California (who also had a colectomy) he sent Alexis a stuffed piggy some lip gloss and sticker earrings (and yes, both of my girls got them EVERYWHERE!). Today I check the mail, and we received a $530 gift card to Toys R Us and a $50 gift card to Olive Garden, courtesy of our friends Brandon & Liz (and from the awesome users of the Howdy Inc forum & Pearl Jam's 10 club forum.) She has seen her fair share of bad days, so its so amazing to be able to watch her enjoy herself. What kid wouldn't love spending that much money in a toy store!


The Great Bowel Movement contacted me and offered to send Alexis a shirt! They seen how much of an impact she made on the IBD community and decided to start a new program called "SponserShirts." By "buying" a GBM SponsorShirt, they will be able to send IBD patients who are in the spotlight, making a difference, or simply fighting an extraordinarily brave battle with their disease. Such a great cause, so if you can, help them out. I know Alexis will absolutely love her shirt--and I hope they know how much we appreciate their gesture.


I still receive multiple emails a day too, letting me know how much Alexis has inspired people around the WORLD. It still gives me butterflies and makes me extremely happy to know that Alexis has touched the hearts of so many.


Today marks 2 weeks since Alexis had her surgery. Hard to believe she has bounced back so quickly! She is finally happy AND healthy (and looks better than ever!)

I can't complain..

Just wanted to drop in and update everyone. I have been extremely busy over the last few days, and just couldn't find the time to get on here.

Alexis is doing very very good. Eating, drinking and back on her regular schedule. She feels good and I have no complaints.

So to everyone who has emailed me; I WILL respond. I enjoy the feedback and love the personal stories. I am very interested in talking to those who have decided to go with the j-pouch and how they feel about their decision and how the surgery itself went for you.

Thanks for checking back; I will attempt to have a better (longer) entry for everyone next time :)

7/19/2012

Shortly after my last blog post Alexis started vomiting. Since she was hardly drinking or eating to begin with I decided to take her right back to Childrens Hospital. Once there they did some blood work, gave her some meds, preformed a CT scan and pumped her full of fluids. It was a loooooong day, but we are finally resting back at home.

Her CT came back clean, no blockages or abnormal adhesion's whatsoever. Her blood work looked normal (I haven't been able to say that in over 8 months!) except for her white blood cells, but they are slowly but surely coming down from what they were pre op.

So all in all, we have no idea why she was vomiting. Maybe it was too much too fast? Maybe she caught a bug? Maybe she was just too dehydrated? Who knows. It's so hard to pinpoint vomiting in a child; as (like the Dr said.) "you can look at them wrong, and they will puke) I will pay extra close attention to her,and if anything is off-- back she goes.

Just keep her in your thoughts, that she continues to heal properly and stays OUT of the hospital!

P.S- Alexis made the Huffington Post-- so awesome! Huffington Post Article. I love that the IBD community is getting the awareness they so much deserve!

Two steps back?

One week ago today, Alexis had surgery to remove her colon, and a temporary ileostomy was created. Since the surgery itself was done laproscopically, she seemed to bounce back fairly quickly.. pushing herself to walk to the playroom the day after surgery, going to the bathroom all by herself just a few days after that, and eating real food just 4 days post op.  She absolutely hates when I tell her shes a tough cookie, but she really is.

Alexis and Stoma Sue

But, here I am, just trying to make it through the day with my head still attached. Alexis has little bursts of energy, but for the most part she spends most of her day laying around. She still isn't eating and I still find myself forcing her to drink(pre-op, she would drink ALL day long!). Her output has slowed down, which is nerve wracking..but I am trying to remind myself that she isn't necessarily taking much in. She doesn't have a fever, and she isn't vomiting or in pain.. but it's hard not to be concerned. Against her wishes, I have changed her opaque pouch to a translucent one so I can monitor her stoma color as well as peek at her output when I see fit. I know I can be a little overbearing at times, and she hates it, but I want to know the second something is wrong (if there is something wrong, that is)

I just wish I had someone to tell me that all of this is normal. I called and talked to the nurse and she said that loss of appetite it normal, but why all of a sudden is she drinking less? At the hospital she was running around non stop, and now she is laying around more.  

If anyone can give me some insight, whether or not I should be more concerned than the nurse is letting on..please oh please let me know! I so badly just want things to be normal for her!

Not much to write about today. Alexis is doing about the same as yesterday.. still laying around and not eating much (who am I kidding-- hardly anything at all!) and I am having to force her to drink. Not sure what her deal is really... hoping she gets out of this funk asap.

Alexis all ready for the CCFA 2012 walk!

We encountered our first leak today. Not to bad at all, but I wasn't expecting to have to change her entire appliance after (almost) 3 days. I am going to try and get her used to wearing the ostomy belt, as I know that can improve the amount of time between bag changes. I was definetly more comfortable and relaxed changing the wafer, cutting it to size etc etc.. this time around vs. during the teaching at the hospital. However, I am kind of worried I cut the wafer just a tad too big. I know this is a  learning experience for the both of us, and I am hoping I can perfect it sooner rather than later.

I am on the hunt for a band for her to wear to cover the bag (think of a belly band--very similar). It will hold the bag closer to her body, thus being more secured and it will cover it under her shirts (since most of her shirts are form fitting). They make special ones for individuals with ostomys that you can tuck into a pocket, and I am not having any luck finding them in her size. We ventured out to the grocery store today and she was concerned about other people seeing it, so I want to get one as soon as I can, especially with school starting in a little over a month for her. 

Still no pathology report on Alexis' colon. I am getting a little antsy. I hope it doesn't mean anything bad. For once, I hope we have good news and they find no indication of Crohns whatsoever. Prayers that she is healed of this disease for good!

First Day Home..

and it went relatively well. Alexis had some "leftover" stuff in the lower part of her intestines, so she kept running to sit on the potty throughout the day. I'm not sure if she was just reverting back to old habits, because there were several times I had to go in and remind her she no longer had to go #2! She was also more lethargic.. lots of laying around and not so much eating. I made sure she got her liquids in, and her stoma and output look good, so I think I will take her out tomorrow to pep her up a little. I am sure the excitement of just coming home was tiring for her (as it was for me-- I took a 2 hour nap..and I never nap!) She is so amazing!

I seriously cannot believe all of the attention Alexis has received. I keep telling her she is a little internet sensation! I have almost 11,000 page views.. she received over 500 cards while in the hospital AND I just so happened to be scrolling through my facebook feed today, and out of no where I seen a pic of her that I posted a few days after surgery. It had been shared hundreds of times, and liked by THOUSANDS! Not to mention, all of the attention she has gotten from the Reddit community-- it is simply amazing. Alexis is a complete stranger to them, yet they have connected with her and have supported her 100% . I have said it before, but I'll say it again... THANK YOU.

P.S-- Did you guys get a chance to watch the video I posted in the last entry? Kyle contacted   the guy who made it, and he will be sending it out to Alexis. I am so excited!

Post Op: Day 4

7,125 page views??? WOW! It's hard to believe that Alexis' story has reached so many people. I can only hope that it reaches someone that needs questions answered or encouragement regarding ANYTHING related to Ulcerative Colitis (I believe I am a PRO at that topic) or colectomy. Like I said, we are opting for the 3 stage j-pouch, and just completed stage one on 7/12/12. You can email me at tara.n.blackburn@gmail.com ( or you can find me on fb: https://www.facebook.com/tara.blackburn)

My husband and I will be working on a more "professional" blog here in the NEAR future, but I am having a HORRIBLE time coming up with a sleek, catchy name. I would like it to pertain to (obviously) my role as a parent to someone with IBD who had a colectomy. If you can think of anything catchy PLEASE let me know!!

Alexis is doing great! After a week of no eating, she was given the okay to chow down on some actual food today! She ate so much, and her body handled it exactly as it should. It was nice, because her "output" finally became something other than pure liquid.. which meant WAY less emptying!

Kyle and I finally had the oppurtunity to meet with our stoma nurse today. She gave us an entire months worth of supplies, made our first order with the home health company and taught us the ins and outs of changing and emptying out Alexis' ileostomy bag. Alexis was scared and screaming because she thought it was going to hurt, which made the entire process exhausting, but we pulled through and got it done. I managed to accidently touch the stoma several times while switching out the wafers and that was weird (but, who am I kidding-- the entire process is exactly that) but it still wasn't nearly as bad as I thought it would be.

We are on track to leave the hospital tomorrow morning, and neither Alexis and I can hardly wait! We have packed up everything-- (including the almost 200 cards she received while in the hospital!!)

Tomorrow can't come soon enough!!

P.S-- This is AWESOME! CHECK IT OUT!!

It's amazing how much support Alexis has got from the REDDIT community-- she is absolutely loving it, and we appreciate it ! It has made this entire experience so much easier. It's mind blowing how much support you can get from absolute strangers! THANK YOU!!!!!