Get used to the Stairs

David Rindlisbacher, my dad, retired from his classroom of forty years today.  His career as an art professor at WTAMU has been an incredible blessing for me and so many others. My parents rarely took pictures of us kids.  But I could line the halls with paintings of me and my siblings. Each brush stroke was a symbol of my dad's vision for his children, his masterpiece.  Dad, thank you for using your talents to provide a wonderful life for your family.   Happy Retirement!

 Like sands through the hourglass, so are the days of our lives.  No surgery tomorrow.  We coordinated childcare through the weekend, birthday celebrations for Kate, and church responsibilities for Matt but at the appointment with the surgeon this afternoon we were told that Maggie's doing too well for surgery.  Her fontanelle seems even softer than they did a few days ago and her head circumference has actually shrunk by a miniscule amount.  It's a good thing and somewhat miraculous, but it's tough to feel pulled in so many directions.  Chances are she'll still need the surgery (in fact the neurosurgeon has scheduled a slot for us in the operating room for the next multiple Tuesdays just in case) but until she gets worse the docs don't feel good about doing something so permanent and drastic unless we know for sure that it's necessary.  It's the right call, but Maggie seems so discontent to us.  She's always been loud (rooting, grunting, pushing, snorti

We're back home now with Maggie.  The surgeon who was away this weekend examined her this afternoon.   He said with confidence that she was stable, and we could wait to do surgery until later in the week when the rest of his team would be available.  The plan is for us to go in on Wednesday for one more exam and then surgery first thing Thursday morning.  The only factors that would change this plan would be if Maggie gets significantly worse between now and then (her soft spots get noticeably harder, she can't lift her eyes up, she can't be roused from sleep, she vomits uncontrollably) or she gets significantly better.  She seems more discontent to us but we're hopeful that she can stay stable til surgery on Thursday (she will). This ETV-CPC (Endoscopic Third Ventriculstomy coupled with Choroid Plexus Cauterization) procedure is amazing.  As explained by our surgeon it was performed initially by a doctor working with children in Africa.  The results of those surger

Maggie is a candidate for the alternative surgery.. .ETV/CPC .  That's great.  It is a rather new procedure for Primary Childrens.  The one doc who does it is out of town until tomorrow (Monday).  His schedule is full until Thursday but there is a chance a spot will open up tomorrow.  So Maggie will start fasting tonight and get prepped for surgery in the hopes it will happen.  The docs give it a 50/50 chance.  Please, please please let it happen. Matt, Maggie, and I attended sacrament meeting at the hospital today.  It is a humbling experience to be surrounded by families who are filled with such faith.  We look around and see children suffering from so many afflictions and parents with heavy hearts.  But we are all united by the power of the atonement and the knowledge that families are forever.  There is a feeling in that room of  "come as you are".  It doesn't matter what you wear, Sunday clothes or hospital robes...it is all Sunday best.  The music is often Pri

On Thursday night, I couldn't get rid of a nagging concern.  Maggie's eyes were sunsetting.  This is where the  eyes turn downward with the white showing above.  It wasn't constant, and she wasn't showing the typical signs associated with brain swelling.  But the Spirit just kept working at me, and I decided to call the neurosurgeon at Primary Childrens.  He wasn't too concerned and told me to come on Friday for spina bifida clinic.  Once there, the doctor thought it was nothing because Maggie's fontanelle (soft spot) was still soft and of course Maggie wasn't sunsetting for him.  But I didn't want to go to Houston next week until I knew for sure she was okay.  So he ordered a head ultrasound.  Sure enough, the ultrasound showed significant swelling in the ventricles of  her brain.  A shunt is needed. Poor Maggie. I hate to see her go through another surgery.  When I'm at the docs office and get bad news,  I try to act brave and wait until the car r

Great day for the Mags (that's what Davey calls her).  The doc said she is healing superbly and is ready to lay on her back.  Hallelujiah!  For the first time, I changed her diaper while smiling at her face and looking into her eyes.  Cathing will be so easy tonight.  She also rode in her car seat on her back as we drove home from the hospital.  It was nice for her not to sleep in spit-up the whole trip.  This way, she just swallows it back down :-)  I wonder what she makes of her new outlook on life.  I know I'm loving it! Kate started second grade today.  It's so rewarding to watch her grow and have new experiences. This morning I had a peaceful, satisfying moment as I made her lunch and wrote her a note on her napkin.  I looked at Maggie and thought what many moms think on the first day of school, "They grow so fast."  When Kate got home, she had two treats waiting.  Ice cream and the chance to hold Maggie while standing. Look at that back pose.

On Sunday, Maggie's back wound started to open up again. Sad. By Monday, the opening was wider. Today we went to the plastic surgeon at Primary's. He said he's never had this happen before. Two surgeries and it still didn't take! Maggie has never been a statistical norm, so why start now? They took out the stitches on her back because they weren't doing any good. So now she's left with an open wound. We will clean it throughout the day and apply a gauze with sodium chloride to it. This will hopefully absorb the goop and help it to heal. So for now she is still on her tummy and without a bath. We pray that her opening doesn't get deeper or wider. The docs say it could take months for it to heal completely. Which means I'll cancel my trip to Houston to show off Maggie to the fetal surgery team. I can't believe summer is ending. Matt will actually go to work each day :( Our little family will never have another summer like this. Thank

I asked Matt what to write for the post. This was his reply, "Surgery went well. Blah, blah blah." He's so eloquent. The plastic surgeon, Dr. Faizi Siddiqi, said things seem good. Now that the infection is gone, the back will hopefully heal in a couple weeks. The grossest part is the two drainage tubes coming out of her back. I love little Maggie, but those tubes stretch my limits of affection. Every time we move her, it looks like they are going to slide out. She'll have them in for a couple days to drain any puss/fluids that might build up under her skin. It's tough to see her corded up again. Of course we can handle it, but it's hard. And she needs a bath! She's never had one and it's starting to catch up with her. My hope is that our posts are helpful for other families with spina bifida kids. Reading other blogs has been a great resource for us. When your pregnant with a child with spina bifida, it's hard to know what to

Maggie's back is not healing well.  On Sunday we noticed that it was separating in the middle where the skin is stretched the most.  Each day, the middle opens more and more. On Tuesday morning, we took Maggie to Primarys to have the plastic surgeon look at it.  He was concerned, but still had hope that it would heal itself.  Later that day, it looked even worse!  Then stitches started coming detached and yellow pussiness oozed out!  So today we ran up to Primarys again and the plastic surgeon said it is infected.  We're hoping that the high dose of antibiotics will clear up the infection by Monday.  That's when we will have another surgery to close up the opening.  We hope this will work and her back will finally heal.  But we are skeptical.  How will restitching it make it stay closed when it didn't work the first time?  The doc reassures us that it is just the top layer that they'll have to redo, and since it won't be infected, it will heal properly.  Stil