Crohnie Girls

Crohn's Awareness Week: While in the hospital in November, Grace became friends with an 11yo girl newly diagnosed, and a 15yo girl diagnosed 4 yrs ago who had once gone w/o food for 9 months! They called themselves the "Crohnie Girls" and hung out in the craft room on the GI floor, painting and talking. It was therapy you can't pay for or get from the best of the best psychologists. It made me smile and tear up at the same time. God knows just what He's doing with these precious girls. I loved that they found comfort and camaraderie in such an unlikely place. Pray for a cure for these girls and thank God for how He cares for us in our times of need.

GO TEAM GRACE!

I've been reading that scientists are close to a cure for Crohn's!  Please donate to CCFA, the leading research organization through my fundraising page HERE.   I've set a goal of $1000 by December 31st, 2013.  That's probably a lofty goal, but we exceeded our goal of $1500 at TAKE STEPS DALLAS and gave $2605 WOW so we can do this!!!!

www.stayclassy.org/teamgrace

Thank you TEAM GRACE!!!

Ostomy Surgery Day

Grace wrote on her hand last night a verse she wanted to take with her into surgery. "God did not give me a spirit of fear".  Now after the surgery she is demonstrating His power, love and sound mind.  With pain meds, she is coherent and calm.  We are thankful for all of the prayer and love poured out on our family today.

ChildLife Faith

One of my favorite things about this hospital besides the great doctors and nurses is something very valuable and precious called ChildLife.  The ChildLife Specialists are trained to teach and inform patients of their upcoming surgeries, but our favorite thing they do is bring crafts and things to do to make the hospital a better place to stay!

As soon as Grace had questions for her doctor about the surgery, he sent our GI ChildLife Specialist, Kimberly to our room with tons of stuff for Grace to see.  Grace wanted to know how the bag would stay on, so Kim showed bags and books and explained the entire process, using this doll.  The more they talked, the more Grace smiled.  

Then she asked the question that made me cringe a bit:  "Is it going to hurt?"

After the surgery, Kimberly explained that her stomach would hurt some, but that she would have pain medication readily available to her.  Grace has had kidney stones and remembers the pain well.  She said that she had had the machine where she gets to push the button if it hurts to give herself more medicine.  Kim thought she may not need that this time, but it's possible.  She talked about the pain being the worst when they would ask her to get up and walk soon after the surgery, because obviously she will have to use her tummy muscles in order to get up.  Kim jokingly asked, "Wouldn't it be nice if we could stand up and walk without having to bend?" and Grace replied nonchalantly and using her hands to speak, "Jesus could take His hands and stand me up, just like that!" And just as nonchalantly and without hesitation Kimberly responded:  "Yes He can and He will and He will be with you every step of the way, so don't forget that!"

In that moment I know God's face shined.  I know Jesus smiled.  I know mountains moved and the enemy shuddered. 

You might ask why all of this is happening to us.  You might wonder if we think God has left us or deserted us…BUT He is here and He's showing us Himself in these moments, as He is increasing the faith of little girl that already trusts Him more than most.  

Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you. Matthew 17:20

Date Set

Surgery is Monday. We are asking no visitors during and after that we focus on Grace. Thanks for the prayers and understanding.

Our View

Hello Dallas!  We have a great view this time. It makes the morning a little better to open these blinds up to my favorite city's skyline.  I can even see my cute little minivan at the end of the lonely parking garage floor.  

Grace continues to wake up with a fever each morning.  For this reason we will not be able to go home on Monday as we once thought.  We've been talking to surgeons and feel confidant in these men and their calling to help children.  Surgery may also be sooner than a few weeks away, but still no actual date.  

My parents are here again his weekend and brought my sister's daughter, Willow, the cousin closest to Grace's age.  They are sweet friends and it lifts Grace's spirit to spend time with her.  At this very moment, they are crafting rubber band bracelets together on her bed and being silly with occasional giggles.  This is what the Bible says is GOOD medicine.  I'm thankful for my parents.

Our homeschool co-op from First Baptist Colleyville sent poster cards and all the kids signed them.  They brought color and kindness to our room.  Thank you Venture kids!  We love you!

Choose Your Own Title

Grace has been decorating mugs that the ChildLife department of the hospital bring her to donate.  She is an amazing artist.  I'm a proud Mom.

Today Grace got a PICC line inserted into her arm (3rd time this year) to receive nutrition.  The doctor still wants to up her calories, so we will continue half the formula as well, hoping to get her weight up before the surgery, which is yet to be set but will be in a "few weeks".

Every morning since Tuesday Grace has had a fever when she wakes up.  It only lasts a few hours then goes away.  Fevers aren't too much of a concern because we know they are just her body fighting the inflammation, as all other infections have been ruled out.

We have been told we will be here through the weekend so we look forward to Monday with realistic hopes, knowing we won't really know we're headed home until a few hours just before we actually are.  

From my last post I think some may have assumed I am frustrated or discouraged.  That was my sarcasm coming through, I suppose.  Truly, I'm more at peace and feeling God's presence more than ever before.  We've come to know this disease pretty well this year.  I've done tons of research and reading.  We're not dealing with a sprint here, but a marathon.  I'm not frustrated at our doctors for not finding a cure because there isn't one.  Yes I get frustrated with all the new faces that come in not knowing details of our situation before they come in, but I also understand this is a teaching hospital and can deal with it.  I'm not one to sugar coat my feelings.  What you see is what you get and in certain times of life it comes with salt and pepper and even onion salt, leaving a terrible taste in your mouth but necessary in certain seasons of life.  (See what I did there?)  I'm teaching my daughter to tell the nurses what she needs when she needs it, to stand up for herself and speak truth because truth be told, it isn't easy for any 13 year old girl to talk about her poop, but that's what we do.  We talk about poop.  We talk about it every day several times a day, and at first it was hard to spill the details, but that's life.  Life contains poop.  (There's a sentence I don't type every day but you know it's true.)  Sometimes it's better to just accept that and put on your boots and trudge through it.  We need to be open to share this because it makes us relatable.  We need to be able to laugh about the way God made us, because…well, haven't you read the book?  Everyone Poops.

Everyone needs this book.  I might give it as Christmas gifts this year.  Act surprised!

Bottom line: (haha)  Grace's story is playing out one day at a time here in 2013.  She's a bright light in this hospital and to a team of many doctors that deal with poop all day long.  She's taking what they give her, and throwing it right back if she needs to…. I love that about her!  God is so good to give us a sense of humor.  I can't wait to meet Him in person because you know He's the funniest being around.  Who do you think created poop and the holes it comes out of?

Well that certainly escalated quickly.  I have no idea how to end this now.  I can't even think of a title.  Maybe it should be….Potty Talk or Doody Duty or Turd Words or Blog on a Log…*cringing*….. no…I think I'll let you choose your favorite.

Did I mention Grace has been decorating mugs?  :)

Crohn's Patience

Coming to the hospital is always an experience in itself.  Retelling the story from the beginning is a part of the entry process that I do not enjoy.

For example….
Student Intern I've never seen before:  So when did her diarrhea begin?
Me:  Um, last year.
…..Silence.

Yes I should be nice.  I tend to lean toward sarcasm in my most stressed of situations.  I'm not patient with the newbies who don't read her records before they come into our room.  I'm not in the habit of looking backwards, but nonetheless I answer the questions:

• Symptoms began in the fall of 2012, possibly the summer.
• Lost 21 lbs. in a month before she was diagnosed.
• Diagnosed by colonoscopy on her brother's birthday:  January 23rd, 2013
• Spent 42 days in the hospital trying to find treatments and keeping her well, as well as one day and night removing a kidney stone in April
• Tried Remicade, even every 2 weeks at times….no longer ordered since apparently doesn't work.  Last Remicade treatment was 10/7/13
• Still taking Immuran, while we don't know if it may be helping some, obviously not treating it completely.
• Began elemental therapy, formula through an NG tube, nightly since Sept. 30. 
• NPO - nothing by mouth except ice, water, and may chew sugarless gum. This is Day 37.  Not that we're counting.  
• Crohn's patients usually (from what I've read) spend 85% of the year in remission and 15% with flares.  Grace has not seen that 85% yet this year.  Mid-May to mid-June…could have been called remission.
• Blood, yes a few times per day.  Watery, yes consistently.  10-12 times per day, yes.
• Weighs 79 lbs.  Had been in the 80s all this summer.   Bummer.
• Fevers came back yesterday, indicating either an infection or a flare.  I can tell them all day it's a flare, not an infection, but they have to take a stool sample's word for it, not mine.  Most results back this morning say no infection, but she's on "Isolation" (= no walking around the hospital to the art room or Seacrest Studios, etc) until this evening, giving the stool 24hrs to show growth of something.
• She doesn't have pain, as she's had before, which is a HUGE praise!  I think this is because she is on such a broken-down formula…Pediasure Peptide 1.5, to be exact.
• Her energy is low, but her spirits are high.  She continues to do her school work so she doesn't get behind.  She watches TV and plays on her iPad and reads several books at once. 
• She does get tired of doctors and student doctors pressing on her belly.  Yesterday she almost said…"Um we just met and you haven't even bought me dinner yet!"  (I think this girl is way smarter than most of these students.) 

We appreciate all of the love and prayers and texts and messages.  I hope you'll understand that I won't be answering my phone here unless it's my husband.  I wish I could tell you how many people have given advice and recommendations, and while I know you're trying to help and mean well, I probably won't respond to those.  I choose to listen to the advice and recommendations of a team of 16 Pediatric Gastroenterology Specialists that went to school for many years and were hired at one of the nation's leading hospitals for children in the nation.  They all know Grace's situation and have worked on her as a team since January.  As you can see from the list above, my Grace is a challenge even to them, and although food exacerbates the inflammation, it's not the cause of this autoimmune disease.  I know this is true because she hasn't had food in 37 days and she still has symptoms of inflammation.  That is why we are here.  I will try to keep everyone updated, but as you can see from the cobwebs on this lovely blog….I'm not very good at it.

Thank you for the prayers and love.  Here's our thank you note from us to you...

xoxo

Grace's Testimony

Grace and I will be leaving for Mission Arlington this Sunday together with the junior high students in our church's youth group.  She worked on writing her testimony for a few days and here is what she wrote.  Pray for her as she has a chance to use her story to lead other kids to Jesus.

Hi, my name is Gracie, and this is my story of how I came to know Jesus. Before I met Jesus I felt that I needed to be saved from sin and myself. The important things in life for me were serving myself and not really caring about others. When people asked me about Christians, God, and the Bible I wouldn't really know what to say because I had not really known about Jesus but now I would tell them that Jesus is the son of God and He died for our sins so we could live forever. In order to become a Christian I prayed and asked my parents to help me understand more. I heard the story of the Lord's Prayer and became more curious about what happens when Jesus comes. Then I realized that I wouldn't be afraid anymore because we would be in a better place with Jesus when we die. Now that I've become a Christian I have the Holy Spirit living inside me. In January I was diagnosed with Crohn's Disease and because I have Jesus I had courage while I was in the hospital.  I prayed and wrote down scriptures in God's Word which made me feel comforted, more at peace and loved by God.  Now I'm not afraid about what will happen to me because I will be with Jesus!

CCFA Take Steps Pictures

Grace Update

We went to get Remicade yesterday on our 2 week plan and then went to a checkup with Dr. Goyal, our GI specialist.  He said she was doing so well that we will try slowing down the Remicade.  Our next trip to Children's will be 4 weeks from now.  We are excited that she is doing so well that we don't need it so often!

Today our whole family is going to see 42nd Street at the Artisan in Hurst and tomorrow Grace and I will go see Daughters of the Regiment at Fort Worth Opera!  So excited to be able to do fun things again and plan for a fun summer as well.

May the fourth be with you!

TAKE STEPS WALK FOR CCFA

A note to all of you who gave to, walked with and prayed for TEAM GRACE: 

Way to go, TEAM GRACE!  

I am so excited to announce to you that our team exceeded our goal of $1500 and made it all the way to $2605!  WOW!!!  From the hospital room at Children's back in February, I never would have guessed while putting this page together that this would happen!  It really is such a blessing to have people on our side in a fight against something so difficult.  As a mom, it's the worst thing in the world to watch your child suffer and not be able to fix it.  Thank you for coming alongside me in this quest to find a cure for Crohn's Disease.  It means so much to me and to Grace that you are supporting us, sharing life with us and celebrating the progress she has made this far.  Love and hugs to all of you and thank you from the depths of my heart.

Click here to visit my personal page.

Amazing Grace

While the rest of our country experienced a horrible week of fear and pain and suffering, my Grace had a wonderful week on the other side of all of that. She has been gaining weight and feeling good, eating almost anything she wants and having fun!

Saturday she and I got to attend our church's mother/daughter brunch. After that she went with friends to the mall! Today after church and a cookout, she went with friends to a Rangers game!

I'd say the good days of remission are here. And to think that just a week ago we were in the hospital getting kidney stones removed! Amazing.

Amazing Grace.

Update from Home --Hallelujah!

Kidney stones took us back Sunday and our urologist went in to remove them. She did find a blockage of many little stones near her bladder but could not see in her kidney at the time. Grace still complains of some back pain so I'm pretty sure there are still some there. We go back next Tuesday to follow up.

Today we went to Grace's 5th infusion of Remicade. It was so nice to finally make the appointment at the clinic rather than needing to go to the ER or hospital before the scheduled time. She is doing very well. We fully expect remission is in effect and pain-free days are on the horizon.

She does go to bed with a nose (NG) tube that she puts in every night. (Amazing Grace again) This gives her 1000 good calories every night as she sleeps and then she can pretty much eat what she wants during the day. (Low fiber/low residue) We are all adjusting well being back home again.

I personally have found myself trying to get everything done as if my time could be short, which helps with my former friend called procrastination but that is quite tiring and I have to stop and remember I should be able to just do it tomorrow which is much more my style.

Last weekend one of Grace's sweet Cyt friends from Newton, KS came all the way to see her in one day. Lauren and the Thompsons left Saturday morning and left again that afternoon. Amazed and blessed by this sweet family's love for our girl.

Our walk for a cure is coming soon. If you can't join us, support this great organization for research on this disease we've come to know so well this year. http://online.ccfa.org/goto/teamgrace

Thankful Project

in everything give thanks; for this is God's will for you in Christ Jesus. (1 Thessalonians 5:18 NASB)

Thankful we are home.

Very thankful.

Oh Happy Day

First taste of food in 3 weeks!!

Thankful Project

Thankful Moriah had a play date with a preschool friend. Sonshine academy at FBC Colleyville has been amazing to us!

Thankful for duck tape! Ahhhh

Thankful for Kim in the playroom who keeps Grace busy with fun activities.

Thankful for Dr. Semrin who seems so passionate about getting Grace well.

Thankful she gets to eat tomorrow. After 20 days!!! Biggest smile in forever.

Thankful for our pastor from Plano and his youth pastor who came and blessed us today. "Pastor's families need a pastor too." -Pastor Sam

Thankful we met a family from Bedford today. Grace wants to go see their little girl tomorrow.

Blessed to see light at the end of this long tunnel.

Day 40 CMC

Based on my extended research on the subject I can confirm that it is a proven fact that the best stress reliever ever is coloring.

Monday on D8

Day 38 of 2013

Grace had some friends from church come visit. This brings her healing on a whole new level. I loved her tenderness toward them as they came in quietly, obviously a bit shocked at the sight of their friend hooked up to tubes in the hospital. She addressed the awkwardness immediately and so maturely. I was so proud. They spent an hour just being girls, which of course includes taking "selfies"! Duh.

On a completely different subject that you probably could avoid altogether I spilt coffee on my beloved red blanket so I'm doing laundry here...again. Just thought you might like to see my lovely little laundry room on D8. Exciting I know.

It is Monday.

Weekend update

We've spent the weekend healing and waiting for bowel rest and Remicade to slow down the diarrea. It's working! Tomorrow we will have more news but today Grace was in the online version of the Dallas Morning News! Very exciting! Grace has also been busy working on her duct tape business as she gets more orders daily! More news tomorrow...