utechblog

Dear Family and Friends,

To keep you up to date on Zoe Utech, I created a CaringBridge website. You can follow Zoe’s progress and show your support.

Visit Zoe’s website in two easy ways:

1. Visit the CaringBridge website by clicking the link below.

http://www.caringbridge.org/visit/zoeutech

2. Enter the website name, zoeutech, at www.CaringBridge.org.

When you visit you’ll be asked to log in, because I’ve chosen to keep the site private.

Show your support for Zoe
• Visit and keep up to date.
• Leave a message in the guestbook.
• Receive e-mail notifications when the journal is updated.

Thank you.

Janet

As Mike posted last night, today was Zoe’s ct scan. This test was supposed to give us a definitive diagnosis by ruling out signs of Crohn’s disease.

It was an early morning and then we played “hurry up and wait.”  When a department gets behind before 8 a.m. you have to feel bad for how long their day is going to be.  We were scheduled at 8:15 but didn’t get her IV in until 9:00.  That went better than we could have hoped for. They put numbing cream on three locations, but only on one of her hands.  As it turns out, however, the only vein they could find to use was in that one hand. Figures, right?  She was nervous but she handled it like a pro and the hospital staff working with her were incredible.

After that she was supposed to begin drinking the contrast solution. This was another concern of hers — she hasn’t let go of some of those traumatic memories from before and stepped into the healthy version of herself.  I had to leave for a poorly scheduled job interview and Mike stayed for the rest of the procedure.  She did have an attack of nerves and took awhile to get talked back down — again, Thank the Lord for those hospital workers!  They did manage to get her calmed down and complete the scan.

THIS WAS OUR BIGGEST PRAYER CONCERN!

My fear was that her nerves would get the best of her in spite of weeks of preparation and that we would have another failed experience that would only make the next attempt that much worse.  Thank you to those who lifted her up in prayer, it was certainly needed and definitely answered.

We were expecting results tomorrow, but already received a phonecall from her GI doctor’s office with the results that there was no evidence of Crohn’s disease! Her diagnosis remains Ulcerative Colitis unless a future flare-up shows signs of it being Crohn’s.  Apparently there is a lot left unknown with Irritable Bowel Diseases (IBD) and also much uncertainty. Diagnosis is generally tricky and ongoing.

In the mean time, we’re celebrating these victories today.

Zoe’s test is in the morning. Having just wrapped up the second round of what turned out to be a 13 hour day at work I figured I would throw in a few thoughts tonight.

I really think Zoe will do a great job tomorrow, she became a little aprehensive when she learned she would need an IV for the procedure tomorrow, but I know she will do great. It is amazing to me how much this whole ordeal has brought her in to her own, she has quite the sharp wit and is actually pretty funny. It really seems like she has grown up a lot over the past couple of months yet at times she still seems to be holding on pretty tightly to being more immature, but then again don’t we all to the degree we can get away with.

School will be starting back up soon and it will be good to have this procedure behind us and hopefully confirm the diagnosis we have had for the last few weeks. Ironically today (it is after midnight) is the end of my first 90 days at my current job. God knew what He was doing and His timing could not have been more perfect. I have to write up that story and share it. My daughter is alive and her condition is in remission, we have a great income and health care benefits just in the nick of time, not to mention the awesome medical care we have received from our family doctor and the medical staff at CCHMC – you have to ask yourself “what are the odds?” – well, with God… 100%

The doctor’s office called today with her latest blood test results and with a date for the CT enterography scan.  First, praise God her blood levels are all nearly back to normal!  She is still considered anemic, but her levels are right at the borderline.  Other levels show the inflammation is now under control and she can be considered to be in remission!

Pardon us while we do a little celebration dance…

The nurse also had an appointment for the CT scan — this coming Tuesday!  That was fast, but that’s good I think.  No dramatic buildup and it can be over and done with, results should be ready the next day.  She’ll have to arrive at 7:15 a.m. and at 8:15 the procedure should start.  The problem is I have a job interview later that morning with about a 45 minute drive. We don’t want to change the CT and the interview can’t be changed.

Please pray for Zoe’s ability to drink the barium. Pray for her nerves to remain calm and the ability to hold everything down.  She’s worked hard in therapy to learn how to do these things and she needs to trust God to help her accomplish it.

I’m not even sure who’s still reading here. I know it’s not a lot given the visitor stats, but we expected that as news dwindled and the immediacy of her situation died down that interest would as well. We’re thankful for those who have come and gone, and for those who continue to peek in from time to time.

Today we had another follow up visit. Zoe is completely back to normal in regards to symptoms. She’s also regained every bit of weight she lost and then a bit more. Her cheeks are rounded from the steroids but that should start to go down a little as she contiues to wean off of the Prednisone. The doctor has her scheduled to be done with the Prednisone by September 1. She is also changing from a high dose of Vitamin D to a multivitamin. Both of these are great news! She’ll have another visit on September 11 and after that we’ll hopefully see much less of them.

In the mean time, we need to get the CT enterography scheduled before school (hopefully) to finalize her diagnosis. Without that procedure we can’t know for certain that she doesn’t have Crohn’s.  That’s the big question remaining in this whole thing.  In related news, she was released from therapy and can return as needed.

It’s so good to be in a place where we are looking forward now instead of tip-toeing around the present or wandering about the past. School shopping is almost complete and Zoe is ready to head straight into 7th grade Honors classes. Tonight there’s a team picnic where she’ll get to meet other students before school starts.

She’s back to her old size in clothes, too. We’re still waiting for her GI appointment next week where I am hoping they will finally take her off the Prednisone. She’s almost down to the dosage to come off of it completely. But for her sake and ours, it will be a big blessing when we are done with that stuff.  If I’ve ever encountered a “necessary evil” I would say Prednisone is it. I’m also hoping that she can perhaps come down from (or even be done with) higher doses of Prevacid. That one helps ease  the acid reflux/gastritis she had that was aggravated by Prednisone.  There was even some talk of her being able to come off the iron supplements and the weekly vitamin D supplement.  That would essentially leave her on 6-MP once a day, which has helped induce remission.  Each phase of weaning, though, brings the possibility of the flare up returning so we remain positive but vigilant.

I am so thankful for those who continue to write and ask how she’s doing, or send notes of encouragement and let us know they’re still praying for her and us.  It means a lot to have that continued support even after the immediate crisis is past.

It always feels good to say that Zoe is doing well. And she is doing very well, actually.

Still no return of symptoms from the Ulcerative Colitis so it appears, at this time, as if it may be in remission. No official confirmation on that until her next GI appointment on August 5, but from our point of view that’s where things stand.

We’ve decided that we have a love-hate relationship with Prednisone. Between that and her other medication, we are thankful for it as it has truly saved her life in every since of the word. God worked a miracle using that drug.  It is, however, like a double-edged sword. If you’ve never researched long term use of corticosteroids, you might do that. It’s harrowing what it can do, which is why no one should be on it long term unless absolutely necessary.

If anything, she’s struggling with the side effects of the prednisone still. Her appetite is still out of control and it’s hard to tell a kid who thinks she’s ravenously hungry (and her body IS telling her that) that she really doesn’t need all that caloric intake anymore. We’re trying to maintain a healthier balance for her but it’s still very difficult. She’s also struggling with her ability to concentrate and not get distracted. Conversations with her at this dosage level are frustrating for both her and the party she’s trying to talk to. She frequently forgets what she was going to say almost immediately after starting the sentence.  Fortunately she has a wicked sense of humor that helps her through those times. I don’t know how we didn’t catch it before all this happened, but she’s showing herself to be incredibly witty with some great comic timing, even when she doesn’t mean to.

She’s continuing to work with a therapist who is helping her reduce her fears of needles and most medical procedures. To her credit, she really enjoys the time they spend together and comes out chattering non-stop. Me? I’m just jealous of some of the tools those therapists have on hand.

If you want to focus your prayers for our families right now, I would ask that you pray for me.  I have resigned from my job and taken a short hiatus to get myself back in order. Stress takes a toll on everyone, but some are more sensitive to it. That’s me. So I’m trying to what’s good for me and good for my family.

It occurred to me that it’s been awhile since either of us have updated here.  It’s not that it slips our mind, we’re just unsure of what to say. After the roller coaster we were on, things now are kind of like a lazy river. Where we previously had news multiple times a day, now we’re in a holding pattern.

And loving it.

Zoe’s symptoms of Ulcerative Colitis have left. She continues to take medication daily and is still weaning from steroids. In total, she has regained somewhere around 20 pounds and looks much more like her former self than she has in awhile. Her moods are pretty good and she is enjoying her summer, spending days swimming at the grandparents’ small inflatable pool. It’s not much, but it’s enough to keep her and the other three entertained and cooled off.

I’m happy to say that we have reached the point of having a well-child appointment for her with our family physician. If you can imagine it, she and the others are all anxious to see him again and thank him for his part in getting her the help she needed. Her GI team did the hard work, but someone had to steer the ship in their direction and he had the wisdom to do that. After several years of trying to find a good doctor, I believe we’ve found one. And he’s a keeper.

Today Zoe had two appointments at Children’s. One with someone who is working to help her manage stress, a critical component in managing ulcerative colitis. She enjoyed it quite a bit, actually.  The second appointment was with the GI doctor.

She’s gained back ten pounds.. yes, TEN. Her blood pressure is good and her bowel symptoms are all but resolved. The doctor gave us directions to start weaning off of Prednisone, which is a big deal in my book.  She had more blood work and they also didn’t believe that she would need to be on the iron supplements for much longer. The results of her bloodwork will tell us more.

All in all, it was a fantastic appointment with good news, finally.  If you’re praying for Zoe, we’d like to ask that you remember her for some pain she’s been having in her joints, specifically her knees and ankles. At this point, we don’t know if it’s related to the ulcerative colitis (it can cause joint pain) or if it’s a result of her still needing to build her strength. Regardless of the origin, she’s been struggling with it quite a bit in recent days, often leaving her in tears. God can manage this like He has the rest.

Again, thanks for the support and prayers. Life is starting to return to a manageable pace and for that, we are most thankful.

One of the greatest gifts we have been given in this experience is a sense of community that is so extensive it’s hard to comprehend.  I googled my daughter’s name last week and found her name on a prayer list posted by a church that is not only not in our denominational group (which is perfectly fine), but we can’t seem to figure out how her name would have made its way to them.  Someone, somewhere thought enough to lift her up in prayer and we can’t even say who it is.

How BIG is our God?!

I was convicted heavily last week by a sermon during the One Prayer event our church participated in.  Andy Stanley preached how God is in Control, even when it feels like he’s not there at all. He is still working.  That has been the very thing I have struggled with so much.  I knew in my heart that God was still in control but in the middle of the storm it was so hard to see where He could possibly be working in it or through it.  Then this week Francis spoke on God is Strength. That was just comforting.  I’d encourage you to find those talks and listen to them for yourselves.

By all appearances she’s doing very well. She almost seems back to normal functioning. But we have an appointment on Wednesday. Pray for that appointment and the time afterwards.  A big test will be when she’s starting to wean off of the prednisone and it’s possible symptoms could return.  Pray for guidance for the doctors to treat her in the most effective way.