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Tuesday, April 30, 2013

Starting to Perk Up

Levi has been sleeping the majority of the time lately, but today he perked up and had a pretty good day.  He loves to be outside, so I took him out this morning into the gorgeous sunshine that we've been waiting so long for.  We gave him a haircut, and he had the first tub bath since the surgery.  All that activity wore him out, so he took a long nap and woke up feeling better.  This evening we went out again.  He was interested in all the noises of the birds, lawnmowers, etc, and even picked his head up and looked around.  Then he did something he hasn't done in nearly a year.  He sucked on my arm!  He's been cutting molars and canines, so I expected him to bite down, but he didn't.  Just to see what would happen, I stuck a pacifier in his mouth, and he sucked on it briefly.  This is a big deal!  He stopped taking the bottle last July and hasn't had much of a suck reflex since.  It will be so great to see him regain some skills he's lost now that he feels better!  God is SO good!

Monday, April 29, 2013

And...We're Home

Thankfully, it turned out that Levi is still sore from surgery, and codeine just does not work for him  They gave him oxycodone in the hospital, and it worked like a dream.  Since the IV antibiotics were due to end tomorrow, they discontinued them a day early and pulled the PICC line out before we went home.  And that made me ecstatic!  We were home by suppertime.  Thank God that all is well with Mr. Levi!  Thanks for your prayers!

Saturday, April 27, 2013

And...We're Back

So things have not been fine since we left the hospital on Monday.  We went back to the ER Tuesday night due to screaming, and the PICC line would not flush.  We were sent home with nothing done. So Wednesday I called Grace, the surgery nurse, and codeine was prescribed.  He slept all night and was lethargic and light sensitive the next day, so I stopped codeine and tried Benadryl.  He slept all night again, but woke up screaming.  Nothing calmed him down, not Advil, Benadryl, or codeine, not holding him, bouncing, or rocking.  So, we came back to the ER, where they ran all the normal blood tests, checked the shunt, took tummy x-rays, the whole nine yards.  The tummy x-ray looked different, but they think it's because the colostomy was just placed.  Everything else looked normal.  He was admitted for observation, and I was so glad.  Since going home on Monday, everything has been so stressful, from coordinating two IV antibiotics, pain meds, dealing with extreme fussiness, trying to figure out where the pain was coming from, etc.  It was nice just to be able to sleep and let the nurses take care of all the medical stuff.  As I've said before, I never wanted to be a nurse.

Dr. Walthen believes that Levi just doesn't respond to codeine.  (It's never worked for me, either.)  They switched him to a different medication, and he's been sleeping and relaxed ever since.  If he continues to do well, we can go home tomorrow. 

Wednesday, April 24, 2013


Well, we finally went home Monday evening after a lot of confusion.  Bless Grace for coordinating everything that led to our discharge.  SSM delivered antibiotics and sent a nurse to teach me how to use it.  He's on two different IV antibiotics.  Flagyl is given every 8 hours, Zosyn is every 6.  Needless to say it's been busy!  It isn't difficult, though.  Flagyl is given over an hour on a little pump, and Zosyn comes in a neat little ball with a balloon inside that pumps the med through the picc line.  The first night I was up and down constantly, but the home nurse set up a schedule that allows me much more sleep!

Tuesday morning went well, Levi slept a lot, but that afternoon he started screaming again and only had short periods of quiet, only when being held.  I was leaning toward taking him to the ER, and then at 9:30 when I tried to give the antibiotics, the picc line wouldn't flush.  So off we went to the ER.  The triage nurse didn't have any luck with it either, but they called down a nurse from picu, and she flushed it no problem.  She said sometimes you just have to play with positioning.  How frustrating!  The doctor took a tummy x-ray to be sure everything was fine and told us to keep doing what we're doing, and if we wanted a stronger pain med to speak to the surgeon.  So I've left a message with Grace and Kim.

He's better today, but still not great.  He's comfortable enough to be quiet and get some sleep while I'm holding him, but he's unable to spend much time on his own.  I'll be so glad when this is all over and he's feeling better!  Thanks to all of you who have been praying for him!

Monday, April 22, 2013


I just spoke with the nurse from Cincinnati Children's Hospital Motility Clinic.  The doctor has reviewed Levi's records and wants to do a full work up!!  This is the number one motility specialist in the country! She doesn't know how the colostomy will affect their plan.  He may want to see Levi while he still has it, or he may want to wait until it's been reconnected and healed.  I'm hoping he wants to see him before.  She's going to talk to him today and get back with me. I'm still shocked at how quickly they responded.  God is SO good!

UPDATE: Dr. Kaul does want to see Levi before the colostomy is reversed.  I should be hearing from them soon regarding an appointment date!

Bood Sugar

Yesterday was a fine day.  The Tylenol/Advil combo kept Levi comfortable enough that he did not need Morphine at all!  He had a few screaming spells, but they were quick and he quieted right back down.  The surgery team thinks it's just gas or stool moving through sore bowels.  We were able to hold him on our shoulder for the first time since surgery, and he took a nap on his tummy, his most favorite place to be.  They had been testing his blood sugars every four hours and they were never close to crashing, but did dip down, so they monitored them every hour for over twelve hours.  The poor little guys fingertips are purple! For the most part he didn't mind, though.

Today is supposed to be discharge day.  I would really appreciate prayers that nothing happens to change that.  I can't wait to go home and sleep in my own bed!  So many thanksto all those who have been praying for him.

Sunday, April 21, 2013

Decent Day

Yesterday was a so so day.  Levi slept most of the morning away.  Sleep is healing, and he looked so comfy!  Patrick and I actually went OUT to lunch.  There weren't a lot of kids on the floor, and our awesome nurse Tiffany kept a good eye on him while we were away.  We went to a little place called 9th Street Deli in Soulard.  It was in a very cute part of town.  Patrick had read reviews on their sandwiches.  We ordered the philly, which was supposed to be "the best" in the area, and a turkey sandwich with jalapeno bacon.  OMG!  I cannot even begin to describe how delicious they were!  The people were friendly, the atmosphere was sunny and comfortable.  It was exactly what I needed!

During the afternoon, Levi started to get uncomfortable.  At this point he was only on Tylenol for pain. It seemed to be from gas, as it would come and go.  Toward evening he had a huge screaming fit that didn't stop until an hour after he'd been given Morphine.  Usually Morphine takes it away quickly.  The surgery resident said that everything looks wonderful, he's progressing with no problems, and she thought that it more than likely was pain from gas and stool moving through bowels that were still sore.  She ordered ibuprofen to be given as needed, or even every six hours to keep him comfortable.  He had a great night!

Today I plan on actually putting clothes on him.  He is no longer on monitors, so he doesn't have leads stuck to his chest, they turned the IV off last night, and he is at goal feeds since midnight.  I'm holding out hope that we can go home today, even though I know tomorrow is probably more likely.  He has done amazingly well with this surgery.  He is such a little trooper and fighter.  Thanks to God for bringing him through yet another scary situation!

Saturday, April 20, 2013

Feeding Again!

Yesterday we were finally able to start Levi's feeds again.  We skipped Pedialyte altogether and began with half strength formula at 10 mls an hour for four hours, then switched to full strength formula, increasing by 5 mls every 6 hours, depending on how well he does.  The only issue we encountered was that overnight he hadn't produced any stool from the stoma, so we held off increasing for a while.  Thankfully when we woke up this morning his bag contained a decent amount of stool, and so we increased.  He's now at 25 mls an hour, with a goal of 40.

Kim, the surgery nurse, came in yesterday to change the dressing and colostomy bag, and teach me how to do it.  I'm surprised at my lack of squeamishness about this.  When the g-button was changed the first time I honestly felt like I was going to vomit or pass out, which isn't like me.  Maybe caring for the button has prepared me for this, or maybe I'm just so relieved that he has a reprieve from all the belly pain, but for whatever reason, the stoma does not bother me at all.  We removed the bag, cleaned the area, and placed a new bag.  I took notes, but it's actually a very simple procedure.  Kim is a great teacher!

The cultures taken from the shunt still show no infection.  Levi is feeling better, turning from side to side on his own, we can pick him up without even a grimace of discomfort, he is sleeping restfully and alert when he is awake.  I'd like to go home tomorrow, but realistically Monday is more likely.  He has been downgraded to general care, so I've requested to be moved to 2 South, our home away from home.  If they have room for us, we will go there. 

We have so much to be thankful for!  The last eight months have been nightmarish at times, but God is always there with us and brings us through.  Always, there have been blessings within the turmoil.  We have met people we never would have met, been blessed by many, and hopefully have been a blessing to others.  We give all our thanks to the Lord for keeping Levi safe and calming us through the storm!


Thursday, April 18, 2013

Doing Well!

Today was a busy day for Levi.  The NG tube and the IV were both taken out.  He got a PICC line, which is like an IV but more permanent.  He will have to go home with IV antibiotics for about two weeks.  So far the cultures are still showing no infection from the shunt.  Since it's been over 24 hours since the cultures were taken, then most likely there is no infection present.  Thank God! 

Levi has already met two out of three requirements for going home.  He hasn't had any fevers, and the stoma is working.  Tolerating his normal feed schedule is the final item he has to cross off the list.  Tomorrow they will start feeding him half strength Pedialyte at 10 mls an hour and once that is tolerated he will progress to half strength formula, increasing by 5 mls every six hours or so, with a goal of full strength formula at 40 mls an hour.  We will go home on this continuous feed, which is what he was on before the surgery, but we will be able to begin increasing to bolus feeds again.  I'm excited about that.  I'm not a fan of continuous feeds through the day.

He has had a couple issues of dropping/irregular heart rate while he's been in a deep sleep.  He's had two EKG's and a consult has been put in with a cardiologist.  Dr. Fitzpatrick doesn't think it's an issue, but she wants to be sure it's checked out.

Some of our 2 South nurses came to see us yesterday, and I ran into a couple others in the cafeteria.  We miss them and hope to be moved down there when we are downgraded from TCU status.  Our TCU nurses have been outstanding, though!

This morning Levi hit a rough spot with pain, and again this evening.  The rest of the day he was awake and alert frequently.  Now he is snuggled in bed for the night, and I'm about to do the same thing.  Thanks for keeping him in your prayers!

Headed down to get the PICC


Wednesday, April 17, 2013


This morning Levi was still pretty sore and would get cranky just before time for meds.  Morphine is ordered in case the other meds don't take all the pain away, and he had one dose this morning, and one in the afternoon.  As the day wore on, he seemed more relaxed.  The surgeon wanted him out of bed and moving a bit more.  She said it's good if he cries, he needs to take deep breaths to keep his lungs clear, and we can't just ask him to cough for us.  That makes sense.  I was worried it would hurt him, and he was uncomfortable during the move, but once he got settled in Patrick's arms he was fine.  In fact, he was better than he'd been all day.  I took him when Patrick left, and it felt great to cuddle with him.  I gave him a sponge bath and brought out a few required cries, then he snuggled under his fuzzy blankie and went to sleep.  He had one issue with irregular heart beat and they took an EKG.  It was normal.

Several good things happened today.  He is already stooling into the colostomy bag.  The surgery resident said that he is ahead of the curve, and they were surprised and pleased to see that it was working already.  The foley catheter came out this morning, and he's had an appropriate amount of wet diapers.  The neurosurgeon came in and tapped the shunt, by placing a needle into a reservoir in the shunt and draining spinal fluid.  She tested all components and said that everything is working very well, and the fluid looked great.  The preliminary results show no signs of infection, which is wonderful!  The complete cultures won't be back for a few days though.  Tomorrow they will place a picc line for giving tpn nutrition while we let the bowels rest.  He should only have to have that for a few weeks.

I feel so blessed!  Life has been pretty difficult since the g-tube was placed, and now I feel like the issue has finally been found and will be resolved.  Our hope is that once the colon is put back together, it would have had time to heal, and will work correctly again.  I know that God's timing is perfect, and I definitely have had very impatient moments in the last eight months, but I truly feel like the time for answers has come.  We may never know why Levi's colon has had this issue, and that's okay.  The important thing is that we are on the road to fixing it.  I'll continue to praise God, and follow where he leads us, and trust in him.


Tuesday, April 16, 2013

Plan for Going Home

I just spoke with the surgical team and have learned what is expected before Levi can go home.  The surgeon said she would anticipate about a five day stay in the hospital, but of course that depends on how everything goes.  Ultimately, in order for Levi to be released to go home, he would have to be fever free, on his normal feed schedule, and have a working colostomy.  She also had no problem with writing a prescription for benadryl just in case the meds already ordered aren't enough to keep him comfortable.  They should be, but it gives me peace of mind to know there is something else just in case he needs it.  I really like the surgeon (I believe her name is Dr. Fitzpatrick).  She's very personable, explains everything very well, and doesn't mind my questions.  She said the earliest that she would consider reversing the stoma would be six to eight weeks.  That's actually earlier than I would have thought.  Again, that depends on how well everything is working. 

The neurosurgery team will tap the vp shunt tomorrow to be sure that there is no infection within the shunt.  This involves inserting a needle into the shunt and withdrawing some spinal fluid.  It hopefully won't be too uncomfortable, and definitely will be less painful than a spinal tap!  If there is infection, it will be treated with IV antibiotics, which means possibly going home with a picc line for a couple weeks.  Dr. Fitzpatrick said that the area around the shunt tubing looked good and she doesn't anticipate an infection, but it's better to know for sure.  I agree!

Pneumatosis and Colostomy

This morning when the surgeons performed exploratory surgery, they found pneumatosis, a condition where air is inside a portion of the colon walls.  This must have seeped into his tummy, causing the air there, but thankfully there were no perforations, and the rest of his colon and intestines look great.  He does now have a colostomy, temporarily, to allow the damaged part of the colon to rest and heal, before reversing the surgery and praying that this will fix his bowel issues.  I don't currently know how long they plan to leave the colostomy on, but I should have that information soon. 

We were told that the pneumatosis is not the cause of the bowel issues he's had for the last eight months, that it's recent and very painful.  Patrick and I believe that the part of the colon affected has been sick and weak since the feeding tube surgery, and that it's just gotten worse.  We are hoping that once the colostomy is reversed, that will be an end to all the bowel troubles.  As for now, we feel that all the vomiting, bloating, distention, laxatives, motility meds, and suppositories will not be an issue because the stool will flow directly into the bag, and Levi's little body doesn't have to deal with it for a while.  I believe the extra seizures, though still very light, that he's been having are due to the GI problems, and will now resolve.  He has been so sick, and still finds time to be happy and learn and progress.  If the colostomy provides him with freedom from GI pain, then it's worth it.  I can't imagine how much happier he will be, and how much more he will learn and progress. 

Right now he is resting comfortably.  They have him on round the clock scheduled pain meds.  He actually looks much better now than he did before the surgery.  That ferocious frown is gone, and he looks relaxed instead.  Please continue to pray for his recovery and healing!

Emergency Surgery

Today was not a good day for Levi.  He woke up early throwing up.  I know, not too much off the norm for him, but he continued to feel poorly through the day.  He just needed to be held all day.  Around 3:30 he started screaming, and he didn't stop but for very short periods of time.  About 8:00 we decided to take him to Cardinal Glennon ER.  After the usual bout of testing, we were told that the surgery team would be coming down to talk to us.  Apparently the x-ray showed that there is gas in his belly, outside of the intestinal tract.  It could be from changing the button today, but it could be a torn colon, a problem with the appendix, or something similar.  The surgeons said they didn't know exactly what they would find and expect the surgery to take an hour and a half.

I guess I wasn't too horribly surprised about the surgery, considering what he's been through the last eight months, but I was surprised when I was told they would operate within the hour.  It's a scary thing to have your child readied for surgery spur of the moment like that, at 3:00 in the morning, and even more so when the realization sets in that almost the entire team of surgeons have been called in from home.

I have never seen Levi scream like today.  The poor little guy is hoarse and close to losing his voice.  Thankfully by the time they took him back to surgery he was at least feeling well enough to stop crying. 

Levi has traveled such a long, difficult road in his little lifetime.  We are praying that this surgery will uncover the reason for all his GI problems since the feeding tube surgery, and reveal answers.

First and foremost we pray for his safety, and ask that you all join us as well.  Thanks for sending love and prayers for Levi!

So Cute! Levi was rubbing his nose and cheek on this gel octopus :)


Sunday, April 14, 2013

Video of Levi Learning to Balance in Gait Trainer

Levi has been so motivated and trying hard to learn control of his body.  The gait trainer that our physical therapist loaned us doesn't have a headrest, so we have used a piece of sturdy cardboard to keep him from throwing his head back too hard and hurting himself.  Recently I decided to let him try to go without it.  He's showing so much desire to hold his head and trunk himself!  His head still falls forward and back, but most times he catches it before falling too far.  He also doesn't fit as snugly without the cardboard, so he has to watch the rest of his body as well.  I think he's doing an excellent job! 


Thursday, April 11, 2013

Contact with Cincinnati Children's Hospital

Today I received my first contact with Cincinnati Children's.  The lady I spoke with was super nice.  She explained that she would email me a list of medical records they would need, and after the doctor reviews them she will call me with an appointment.  I spoke with the Cardinal Glennon radiology department and they are mailing the records out in the morning.  I hope everything else goes that smoothly!  I know that they schedule based on medical needs, not first come, first served, so that is great.  We've been dealing with these issues for 8 months now, with countless trips to the ER and lengthy hospitalizations.  I'm praying we can get seen quickly!  At least at the  moment I feel that we are managing his symptoms in a more successful manner.

He was so cute today!  He had an excellent speech therapy session with Kathryn.  Later in the afternoon he was a bit fussy.  I thought he just wanted me to hold him, so I did while I was using the computer.  No, that wasn't good enough.  He wanted my undivided attention.  Once I started interacting with him, he was all smiles, holding his head up, etc.  Once he'd had enough, he settled down and took a tiny catnap on my lap.  He's also seemed bored in his normal spots like the feeder chair and having tummy time on the floor.  I put him in the gait trainer and he was having a great time.  His head control was very good, he actually set off his little flower toy several times, and he was generally happy.  Until Daddy got home.  Patrick didn't even make it into the living room but Levi knew he was home.  I was sitting next to him, and once he heard Patrick's voice he stood up, lifted his head up, and smiled one of the biggest smiles I've seen from him.  If he could have jumped up and down, he would have :)  It was a great day!  At bathtime he decided to scream for an hour, but I think the day had just caught up with him, and he was overly tired.  He's snoozing away now, looking precious, as always.


Wednesday, April 10, 2013

"I'm So Glad You Found Me In Here"

I love to read.  When I read, though, I do it for entertainment, to escape reality for a short period of time and be someone else, go somewhere else, do something else.  My particular favorites are Lynn Kurland's time travel romances.  They are so much fun!

I don't typically like self-help or any type of serious books. A friend from church told me about a book regarding Autism, and that he thought of Levi the whole time he was reading it.  When he gave it to me, I promised myself I would really try to read it, but I wasn't excited about it.  I brought it into the house and noticed the title, I'm So Glad You Found Me In Here, and was instantly interested.  This book was written by a non-verbal Autistic man and his mother.  I was bawling like a baby before I made it through the introduction and prologue.  I just started it this morning and haven't finished it, but it's so engrossing I've found it hard to put down.   This man, Matthew Hobson, was diagnosed severely mentally handicapped at a very early age because he could not speak, point, or perform many other actions that were deemed "normal".  When he was eleven, his mother learned of Facilitated Communication, which involves someone applying resistance to the non-verbal person's hand so they can use a keyboard.  This opened up a whole new world for Matthew, and his parents discovered that although his body did not work like ours, his mind has always been sharp and intelligent.  He began going to regular ed schools, graduated high school, and college!

I'm so grateful to Bob for giving me this book!  This story is so inspiring to me!  I have always said that there is more going on inside Levi than we know.  As he feels better physically, we have more evidence that he understands far more than is readily apparent, and his motor skills, vision, and other areas are progressing.  I think of the old saying "if the lights are off, there's no one home".  Sometimes Levi's lights appear to be off, but there's definitely someone home.  He just can't get to the door.

Tuesday, April 9, 2013

Levi's First Appointment with Dr. Herman!

Dr. Herman was Tommy and Miranda's pediatrician, and we are so glad to be able to take Levi to him now!    He's an outstanding doctor with a fun, positive attitude.  Levi has had a lot of labored breathing since January. I've made an appointment with an ENT specialist, but I was looking forward to hearing Dr. Herman's opinion.  He said his lungs sound great and the issue seems to be in the nasal area.  Actually, everything looked great!  Levi has lost more weight, down to 19 pounds 3 ounces.  I was expecting even more of a loss because he's looking so thin to me, but maybe I'm just not used to seeing his little arms and legs bared all day.  He got the last two shots he needed, and now he is finally up to date!  No more shots until Kindergarten!  He wasn't happy with it, of course, and now he's trying to sleep it off.  I've given him Tylenol and am praying that he doesn't spike a fever.

We talked a lot about the bowel issues, and Dr. Herman will be faxing the referral to Cincinnati Children's!  Hopefully I will hear from them this week!

Dr. Rosenblum ordered a test to check his hemoglobin since he's had some more blood in his vomit.  The last two mornings he's woken up with some red blood on his sheet.  At first I thought it might be from teething, but I noticed it after he retched last night, so I'm just not sure.  I tried taking him to Quest to have the blood drawn, but they were unable to get it.  I so much appreciated the lady's honesty, though, in telling me that she couldn't find a good vein instead of sticking him countless times first.  She also tried to do a finger stick, but he curled his fingers up tight.  The right hand was nice and loose, but as soon as she took hold of it, he crunched up his little fist.  He was having none of it!!  So when Patrick gets home we will head out to Cardinal Glennon to have it drawn.  Hopefully Levi won't mind the drive.

Saturday, April 6, 2013

Hurray! Another Poop!!

Today was a fantastic day!  We set out early to hit the first yard sales of the season, and were definitely not disappointed.  We picked up some nice bargains and had fun doing it.  Levi was wonderful in the car, and didn't even mind getting in and out.  He actually fell asleep in the car, which is rare for him, and Moga stayed with him so we didn't have to wake him up.  This evening we met our family at Dave and Buster's for Jeramiah's 15th birthday.  It was a nice surprise to run into our friend Erin and her son Isiah!  We had a lovely dinner; it was so great to catch up with family and see the little ones.  Levi was doing well until I assume a pain hit him and he screamed and passed gas very loudly, and vomited.  His tummy has been hugely distended again since this afternoon.  We left after dinner so we could get him home.  Again, he was great in the car and the closer we got to home the better he felt.  He actually fell asleep in the carseat just before we pulled into the driveway!  I got his bath ready right away and when I stripped him down I found a lovely dirty diaper!!  This makes the fourth time that he's had a bowel movement on his own in the past two weeks.  Something is definitely getting better!  As far as the referral to Cincinnati Children's goes, we have to see the new pediatrician first, so we have an appointment on Tuesday.  I'm looking forward to it.  Dr. Herman has been Tommy's pediatrician for about the last ten years, and he is an excellent doctor!  Even though Levi's bowels seem to be waking up, I think it's best to go ahead and move forward with the referral.  The more help we get, the better.  Here is a picture of him smiling at me in his bathtub.  His smiles were much bigger than that, but of course I couldn't get those on camera. LOL


Thursday, April 4, 2013

Vacation Anecdotes

Patrick started his vacation from work on Friday, and we had the opportunity to take a spontaneous vacation to the Lake of the Ozarks.  Friday afternoon he received a call from work with the wonderful news that he had received the promotion he'd been waiting for!  What a great way to start vacation!

We headed out early on Saturday, and although Levi hadn't had a good day on Friday, the drive wasn't nearly as bad as it could have been.  We settled ourselves into the condo (which couldn't have been more clean and gorgeous!) and since it was raining we just took a lazy day and relaxed.  As the afternoon wore on, Levi's crankiness increased.  He tried to sleep but kept waking up.  I knew he was in some kind of pain, but not sure what was causing it.  I figured it was a combination of teething and tummy issues.  After I gave him a bath, I noticed that the skin around his button was swollen a bit on one side.  I decided to change the button.  I didn't think that's what the issue was, but it couldn't hurt to try it anyway.  Lo and behold, I think that actually was the problem!  After I changed it, I took him to snuggle with Mom.  He fell right to sleep and slept soundly the entire night. I was so relieved!

Easter Sunday he woke up with big grins and was back to his happy self.  We checked out everything from Easter Bunny and headed out to breakfast at On the Rise restaurant.  The atmosphere was awesome, and I just can't say enough about the food!  I had Vanilla Bean French Toast.  I think it was maybe the most delicious I've ever had!  We all left stuffed and happy, and headed to Ha Ha Tonka state park in Osage Beach to view the ruins of a castle built in the early 1900's.  Anyone who knows me knows that's right up my alley!  It was an amazing sight.  We decided to trek down the mountain (200 feet down and 325 steps!) which was not too bad going down, but not fun coming back up!  The view from the bottom was totally worth it though, and the exercise was good for us.  It was a gorgeous warm, sunny day, and we soaked it up!  The rest of the afternoon was spent resting.

Some of the steps we walked down.

View from top of bluffs at the castle.

View of same area from the bottom.

Monday we went to the local outlet mall.  It was cold again, down into the 30's and 40's, and Levi was not feeling well again.  He doesn't like cold weather, he didn't want to sit in the stroller, but he did alright and we shopped through about three quarters of the stores.  We took him back to the condo and relaxed for the afternoon, then Moga was sweet enough to stay with Levi while Patrick and I went out to dinner at JJ Twiggs.  It was a rustic restaurant with interesting decor.  There were antler chandeliers and light fixtures, a stuffed raccoon holding a jar of peanut butter.  The food was excellent!

Tuesday we headed to the Amish/Mennonite community for yet more shopping and eating.  (Who can get enough of that, right??)  We visited a market that was stocked full of dry goods, frozen homemade pies, popcorn, and so much more.  One of the girls was making homemade peanut butter that smelled heavenly.  I bought some loose tea, apple butter, blackberry butter; Patrick got bread and butter and hot pickles, spices, root beer extract to make homemade root beer, popcorn; Moga got homemade pretzels, sunflower seeds, and more.  The next stop was a fabric store.  I didn't quite know what to expect, but it was hand's down the best fabric shop I've ever been to!  The prices were from reasonable to dirt cheap, the selection was excellent and refreshingly different from the mainstream fabric stores, and I think I could have spent a week there.  Needless to say, we walked out of there with shopping bags bulging.  Mom bought Levi a little Amish hat, and I would have gotten him a suit but they were all too small.  Patrick and Levi lounged on a couch while we shopped. After visiting another market and a quilt shop with the most beautiful quilts I've ever seen, we headed to Lehman's, a Mennonite restaurant.  The food was simple but delicious.  All in all the people of the community were friendly. We had several looks due to Levi's feeding tube, but no more than any other day. I was surprised to see that most of the women wore colorful calico dresses since the Mennonite women we see at Cardinal Glennon wear solid neutral colors.   It was a terrific day, and Levi felt pretty good all day.

Stewart's Restaurant, where the cinnamon rolls were bigger than Levi's head!

Amish country road.  You can see the wagon wheel marks in the road, and a carriage in the distance.

Wednesday Levi woke up with huge grins.  We toured Bridal Cave and drove all over Lake of the Ozarks State Park looking for Swinging Bridges, which were pretty neat.  I'm not fond of suspension bridges, but these were not very high and perched over small creeks.  I hopped out of the car to take pictures.  By this time the weather was getting warmer.  We went back to the outlet mall to check out the stores we missed, and Levi began to feel sick.  I had to run out of the Carter's store with him so he didn't vomit inside the store, and ended up wearing it myself.  The poor little guy was feeling awful.  We took him back to the condo, and after vomiting three times I gave him Zofran and he was able to fall asleep.  We attempted to take him out to dinner at Jake Culpeeper's Steak House and thankfully he slept through dinner, which was delicious.  Just before we were ready to leave, he got sick again and Moga took off outside with him but didn't make it before he vomited, and so she wore  it this time.  That must have made him feel better because by the time we reached the condo he was smiling again.  I stripped him down to give him a bath and found that he had a full POOPY DIAPER!!!  Besides the two small bowel movements he had last week, this is the first normal stool he's had without a suppository in over two months!!!  This has got to be a sign of his bowels waking up.  Praise God!!!

Swinging Bridges.  The gaps between some of the boards were almost the width of my feet!

We left Lake of the Ozarks this morning and are now enjoying being home again. It's warm and sunny outside, and we are looking forward to lovely Spring weather and getting out of the house for walks and trips to the park. We've already started Erythromycin again, hoping for great results.  He's only had it for 2 1/2 days a couple weeks ago; I stopped it because his belly was grumbling a lot and the doctor said we could wait until after vacation.  I am crediting it with the recent poopy diapers, so I'm praying that he will tolerate it well and it will return his bowels to working order.