I am a little behind.  So here is a picture dump…
We visited with a couple special people in March.  GG came to visit us at our house.  We loved it!!  Thanks for coming to visit, GG and Neva!

And then we went to Muscatine to visit Mollie and meet Claire.  Love!! The girls had fun doing nails and hair 🙂

In April we took our annual girl’s trip to Kansas City with Oma.  Reese talks about going to Kansas City all the time.  I think this will be something she will remember as a highlight of her childhood.

Reese got to participate in the ISU Fashion Show thanks to Dance Marathon.  A Dancer created these dresses for the girls based on what they liked.  The theme was teal 🙂  Reese really enjoyed dressing up with the big girls.

Dress Rehearsal…

Hair…

All of the models hair looked like this.  I guess they do all the hair the same to focus on the clothes.

Practice…

Showtime…

Reese spent a couple days inpatient at MGMC for an infection. Thankfully, she was in good spirits.

Because your IV pole should always be decorated.  Always.

We love our Corrine!!

I’ve got more.  It’s coming.

Dance Marathon love

Posted by Wulfekuhle Family | Dance Marathon, Families, Reese, UICH

Do you guys know what is happening this weekend?

Dance Marathon!!!

Dance Marathon is the largest student run organization on ISU’s campus.  They raise money throughout the year for Children’s Miracle Network and specifically University of Iowa Children’s Hospital.  They have pledged one million dollars to the new children’s hospital scheduled to be completed in 2016!

This is our second year participating in Dance Marathon. We had an absolute blast last year!!  We made a new video to share Reese’s story and our love for Dance Marathon.

Over the past year the people of this organization have become near and dear to us.  These college students spend their time, talents, and many hours raising money for children who spend time at the U of I.  They give selflessly.  They plan fun events for the kids and families throughout the year. They spend hours preparing for a day long event that is designed to celebrate life.  Reese looks forward to the “day-of” all year.  Dancing, music, games, 900 college students to play with, a 15 hour non-stop party…what’s not to love?

If you (like us) are feeling the love, you can make a general donation here.  But, I want to introduce you to a couple students who have made an impact in Reese’s life.  These folks are special.  Please consider specifically supporting them.  In the end, all the money goes into the same pot, so maybe you should support them all 🙂

Meet Terry.

Terry is our families contact this year.  Meaning, he is in charge of getting us info and keeping us in line 🙂  We love Terry.  We have been able to share life with him and the kids get so excited when he comes over.  He supported Reese at her dance recital, visited her in the hospital- twice, sent his fiance to visit when he couldn’t be there, watches sports with Brian, joins us for dinner, he is just great.  As a matter of fact, he is watching our kids tomorrow night so we can go to connection group.  We are blessed by his support of our family.

Meet Natalie.

Natalie is the co-director for Business Relations on this years exec committee for Dance Marathon.  She and Reese have become fast friends. We were so blessed by Natalie in the hospital when she called up and asked to play with Reese so we could grab dinner.  Um…YES!  She brought crafts and she and Reese made blankets and headbands while Brian and I ate a glorious uninterrupted dinner. She is also a tech at Reese’s pharmacy.  We know Natalie has been working when there are fun doodles on Reese’s medicine bottles 🙂
Meet Leslie.
Leslie was the Morale Captain for our team last year.  She dressed up through out the day-of and it was her job to support and encourage her team of dancers. When she came out for Disney hour dressed as Snow White, Reese was hooked.  Reese spent most of the day-of last year hanging out and dancing with Leslie.  This summer, when public swimming lessons weren’t a possibility for Reese due to her issues, Leslie gave Reese private swimming lessons.  She loved on Reese well during her surgeries this fall too.  Reese is excited to hang out with Leslie at this years day-of!


Meet Jessica.
Jessica is one of the co-directors for this year’s Dance Marathon.  I have no idea how she does it all, but somehow she (along with Anna) manages around 15 exec members, over 200 committee members, and throws a killer event for over 900 students.  And she does this in her free time, while majoring in Pre PA, and being the campus leader that she is.  She’s amazing.  She always has a smile and hug for Reese. When Jess is around, you can bet Reese is with her.  She brought the exec committee over to our house one night for a riveting game of hide-and-go-seek and duck duck goose. And it made Reese’s night.  We are so thankful for her commitment to Children’s Miracle Network!

We love so many of them but I should probably stop at four. And…I don’t have pictures with any more dMers 🙂 We can only pray that we will give of ourselves as sacrificially as these students have.  We are so grateful for all of them!!

Thank you!

Posted by Wulfekuhle Family | Families, Reese, UICH
Reese is home and doing fabulous.  We got out Tuesday afternoon and haven’t looked back.  Our last couple days at the hospital were spent hanging out together.  I love this girl!

Reese had a couple themes songs for our time in the hospital, but this was a go-to.  Reese loves Sara Barielles’ Brave.  Reese was so brave, and we sang this song during yucky times in the hospital.

Reese also loves Katy Perry’s Roar.  And let me tell you, that song is very representative of Reese’s time in the hospital 🙂  She made her displeasure known, so much so that our favorite resident would stop by to be sure Reese was OK because she could place Reese’s “roar” from down the hall. She’s a fighter 🙂

We are SO GRATEFUL for all of your support and prayers.  God used you to make the hard days bearable.  Your prayers sustained us when we didn’t think we could handle any more.  Your words of encouragement reminded us of how many people we had praying for us.  Your gifts brightened Reese’s day. So many people came to visit with us and Reese.  Way more than I have pictures of, but we are eternally grateful for each and every one of you.  Even when Reese wasn’t up for visitors, many of you sat in the family room with us and kept us company.  And when Reese was up for visitors, you all proved to be a great distraction tool 🙂

Reese and Leah painting.  With bottomless glasses of Sprite and a playroom stocked with any toy you could want, they had a good time!

Reese absolutely loved seeing her Dance Marathon friends.  Dance Marathon holds such a special place in our hearts, and we are so thankful to have such great support. These college students are something special.

Natalie even showed up with crafts one night, and she made headbands and fleece blankets with Reese so Brian and I could grab a meal together!

We came home loaded with presents, balloons, gift cards and a thank you list a mile long.  Our house was cleaned, our fridge stocked and we haven’t had to cook a meal yet.  Seriously, so grateful.  So very grateful.

We are excited for our new normal and are praying that this surgery was worth the road we traveled. We pray that the tube gives Reese some much needed freedom and normalcy.

Monday

Posted by Wulfekuhle Family | Families, Reese, UICH

We are still here.  We are waiting for her tummy to wake up.  They are watching her closely for things to start moving and until they do, we aren’t out of the woods.  She is in great spirits and is feeling good.  Her xray films are causing some concern; clinically she is looking fabulous.  She is unhooked from the pole and is enjoying her freedom. Today she rode a big wheel around and around the nurses station 🙂

Saturday

Posted by Wulfekuhle Family | Families, Reese, UICH

Reese is recovering, slow and steady.  Thursday night her 4th IV went bad, so she got a PICC line Friday am.  It is a better IV that won’t go bad.  It required sedation so they changed her dressing while she was out.  Bonus!!

We have been in isolation so she hasn’t been able to leave her room.  She hadn’t been in the mood anyways.  Friday her tests came back negative so they lifted isolation and she went on a short walk.  She also took a bath because her hair looked like this…

We even found some tape in that mess 🙂 The ped. surgery resident offered to comb out her hair while she was under sedation for the PICC line.  I should have taken her up on it!

Also, yesterday they lifted NPO (no food or drink) and she was put back on clear liquids.  She did well,  but got sick last night so we are taking it slow.  Our convo this morning:
R: Can I have some of those plain crackers that are clear?
A: Saltines?
R: Yeah, can I have some?
A: They aren’t clear.
R: Yes they are, you can see through the little holes.
She also explained that Cheerios are on the clear diet because you can see through their holes, too.

When they rounded this morning they said it was OK to try food.  The goal is to get her on oral antibiotics but she needs to do well with food first.  She can’t wait to eat cookies.  Another resident was rounding, asked her name, and then proceeded to tell her all about the amazing Reese’s cookies they have in the cafeteria.  After she realized Reese was NPO, she felt so bad she promised to get her one later.  Reese hasn’t forgotten!

Her spirits are high today and we have already played in the playroom and walked to the skywalk to look out on the game day festivities.  We think Reese has turned the corner and we are happy to have her back.  She is joking, laughing and wanting to interact with us.  We watch a lot of Disney Jr and do a lot of crafts.

Thank you for praying for Reese!!

Reese update

Posted by Wulfekuhle Family | Families, Reese, UICH
Reese did well with her surgery on Friday.  By Saturday she was enjoying wagon rides and even took a couple walks on her own.

We enjoyed the playroom a lot too!

We came home Sunday, and by Monday she was pretty uncomfortable.  Tuesday she had severe tummy pain and no appetite.  We took her to her pediatrician who admitted her to MGMC, our local hospital. They put her on fluids (she wasn’t eating or drinking at this point) and did some X-rays and labs.  They were in close contact with her surgeon.  She spiked a fever during the night so that earned us a 3 am ambulance ride back to Iowa City.  She enjoyed a morphine induced sleepy ride.

After an ultrasound yesterday they learned that her tummy was infected. Last night they sent her back into the OR to redo the surgery and clean out the infection.  The surgeon is hopeful but today is very important.  She needs to remain stable and keep fevers away. She will be on IV antibiotics here for a bit so they can get rid of the infection.  We have no idea how long, it depends on how she responds.  And she still needs to recovery from surgery too.

Reese is so over this.  Please pray for no pain, and peace for her sweet spirit.  We just want our Reese back.  Thank you for your prayers.  We feel completely surrounded by peace that surpasses understanding. With all that has transpired, there is only one explanation for the peace…Jesus.  So thankful for a Savior who never leaves us.

Reese

Posted by Wulfekuhle Family | Families, Reese, UICH
This girl…

 is having surgery on Friday. It is the next step in her journey of living with a lipomyelomeningocele. She has neurogenic bladder/bowel which means the nerves controlling those organs don’t work. They are putting a button in her lower intestine that we will use for continence issues.  Because lets face it, living in diapers isn’t appealing to anyone.  It is, Lord willing, a long term solution until
they create something better. 
The surgery is laparoscopic but we will be in Iowa City for 2-3 days to make sure everything
 works right.  She is excited to order whatever she wants off the menu and eat it in bed 🙂
And this girl…
she’s gonna rock it and I can’t wait for her independence to soar!  She gives so much grace and encouragement to those around her.  God made her perfect for the road He has asked her to travel.  Every day, I marvel at how wonderfully she was knit together.
The surgery isn’t intensive, but it will be a lifestyle change for our family as we learn about her care and make new normals.  Please pray for the surgery, recovery, and all the emotions that come with.  Please pray that she will know she is fearfully and wonderfully made.
Because this girl…
…she’s awesome and we love her 🙂