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 🙂

September 10 on 10

Posted by Wulfekuhle Family | 10 on 10, Families
10 on 10.  Or in September’s case, 8 on 10.  Hey, I’m rusty 😉

Fresh granola to start the day.

Reese started the day off with a little foam rolling, too.  

This is my errand helper while Reese is at preschool.

Cade and I got donuts for a special treat.  I got his out of the bag and he sat at the table and ate it while I unloaded our groceries.  I should have moved the bag, because he put his sneaky little paw into the bag and also ate half of mine.  These are not “sorry I ate your donut, mom” remorseful tears.  I think these are sad tears because I wouldn’t let him eat two donuts.  One and a half is enough.

Naptime work.  And my FAVORITE fall snack!!

Naptime usually involves a house project.  Today it is scraping paint off windows.  Yesterday it was enjoying our weekend work.  I made the world art and Brian made the light fixture.  We’re cheap.

Reese’s depiction of her friends, Zoe and Claire.  

The foam roller, again. Uncle Brett moved in on Sunday, and his foam roller is seriously all they want to play with.  Cade uses it as a jungle gym.