Back to School Party

At the beginning of the summer, Sara bought a fun party magazine while shopping with Shannon that had all kinds of food ideas in it. We did not have a friend birthday party for the big kids this year because we were in Minnesota on Spring Break for their birthday so I asked them if they would like to have a back to school party. Of course I got a resounding "YES!!!" It was one long summer when they asked every week when their party was going to be!

We agreed that they could each invite 4 friends and they picked their invitations, plates, and napkins together. We looked thru the magazine several times before they finally agreed on which dessert we would make. Thankfully they loved my idea of being able to have each of their friends make their own pizzas and we threw in some carrot sticks and apple slices.

Unfortunately, only two friends for each of them were able to come but Adam and Sara remained excited. And six 2nd graders is still enough running around! We searched for ideas of things to do online and came up with the idea to do five "Minute to Win It" games.

First up was the Marshmallow Game--using pencils for chopsticks, how many mini marshmallows can you transfer from one plate to another in 1 minute? This one turned out to be very difficult. Only 2 kids really excelled at it.

The next game was Suck It--using a straw to suck an M&M up to it, transfer them from one plate to another. What a great idea, until you have a little brother that keeps walking around stealing them!

The third game was Scoop It--using a spoon in your mouth, scoop a ball out of one container and transfer it to another. Shannon showed them how to do it and all the kids struggled except Adam! I love the look of determination on his face! Notice that Evan is now strapped in his high chair so he stays out of the marshmallows and M&Ms!

The fourth game was Squirt It--they had to use a squirt gun to propel a matchbox car and the one who got it the farthest in a minute won! If only Evan would stop walking off with the car!

The last game of the night was Bucket Dash--transfer water from one bucket to another with a sponge. There were just a few points separating first place from third so the winner of this last game could change the overall Grand Prize winner who was going to get a Dairy Queen gift card. It was fun to see the kids root each other on.

Once they were thoroughly worn out, it was time to head inside and make their pizzas. I wish I would have had a picture of 6 kids lined up at my counter all making their own unique pizza but it was pretty chaotic!

Lastly, for dessert the kids chose a lady bug cake! It was super fun to make with them and a big hit with all the kids.

Everything went surprisingly well. Adam and Sara had so much fun having their friends over. It was certainly nice hearing lots of laughter as everyone ran around in the back yard. We may have started a new tradition!

Mayo visit #4 and 5

Sara was due for a routine follow up with her Mayo Clinic doctors toward the end of April so we asked if it could be a little sooner and coordinate the timing with a vacation during the twins' Spring Break at the very end of March. Thankfully, it worked out for us to spend a week in Minneapolis and Sara and I drove down to Rochester for one day of appointments.

We had an early morning start of bloodwork and a urinalysis, followed by an ultrasound. We had already submitted a 24 hour urine test 2 weeks earlier. This is our routine schedule for follow ups. Despite all of our efforts with strictly limiting her sodium intake to 1,200 mg per day, drinking 1 1/2 liters of fluid in a day, and increasing her Diuril medication, all of Sara's test results came back worse than the previous follow up in October. The stone on the left that was 7mm in October was now 1.5cm. She had more stones than previously and they were bigger. Dr. Sas was frustrated but certainly not giving up. This course of treatment is typically effective for 98% of cases. He increased her Diuril medication once again to see if that would make a difference. Dr. Sas is also hopeful that a broad spectrum genetic test will be completed soon and Sara would be the perfect candidate to see if something is going on genetically that we are unaware of.

The next day Dr. Sas called to tell us he reviewed Sara's results with Dr. Granberg, her urologist. Dr. Granberg and Dr. Krambeck, her surgeon, both felt Sara's stones were bad enough to warrant another surgery, possibly this summer.

This whole follow up visit was so disappointing for me. We had been working diligently on her fluid intake. Meals were carefully tracked and weighed down to the gram to fit within the sodium limits. To know all of that effort was made and still the stones were forming was really difficult for me. Honestly, I have been very quiet about it because when I talk about it, it makes it more of a reality. And I am just tired. I have been advocating for Sara and her kidneys for 4 1/2 years. It feels like a lifetime and we have gotten nowhere. Yet when I look ahead, she is only 7 and we have a lifetime to go.

On April 27 I got the phone call that the date for Sara's surgery was set for May 24. She would miss the last 2 days of school. She had already missed the beginning of the school year because of surgery so I asked if they could push it back a little. Unfortunately, the surgeon (Dr. Krambeck) is leaving Mayo in June. Considering that she told us last May that Sara's anatomy is so complicated she would recommend not having anyone else operate on her, it was an easy decision to keep the May date.

Logistics are always a challenge to work thru. Adam still had school, as well as 2 baseball practices that we did not want him to miss. And Shannon only has so much vacation time. We decided to divide and conquer for this trip. Sara and I would fly while Shannon would stay at home with the boys and the regular sitter would come for 3 out of the 4 days I was gone.

Sara and I took a 7am flight out of Peoria and made our connection in Minneapolis. Since we had a few hours, we walked around to find this children's play area and a nice little bookstore to do some reading.

 After a quick 20 minute flight, we ate lunch at the airport in Rochester and took a taxi to our hotel downtown. Sara always thinks it's neat that she gets to ride without a car seat. Her new monkey from the airport gift shop sat next to her with her legs crossed, too!

We dropped our bags at the hotel to relax for 30 minutes and made it to Mayo for our first doctor appointment with the surgeon, Dr. Krambeck at 2:30! She reiterated that she would try her absolute best to limit the surgery to a bilateral ureteroscopy. This is less invasive as a scope goes thru the ureters and there is no incision and is considered outpatient. However, there was a chance with the strange shape of Sara's left kidney and the size of the stones on that side that she would need to do the percutaneous neprolithotomy--that is where they make an incision thru the back and into the kidney for extraction like Sara had last summer, which would involve a one night hospital stay.

There are no studies which confirm that procedure affects kidney function. However, a small part of the kidney dies where the incision point is so it must have some affect. Her bigger concern is blood loss of the kidney and each time you poke into an organ, there is a greater chance for that being a concern.

I asked Dr. Krambeck her opinion about the health of Sara's kidneys. Our local doctor in Peoria always wanted to be very clear and up front that Sara will need a kidney transplant some day. Not if, but when, and they would not keep up with her growth demands as she got older. We have never really discussed that at Mayo and focused more on what was urgent at the time. Dr. Krambeck said you only need 1/3 of 1 kidney to function and Sara is far from that being the case.

I also talked to Dr. Krambeck about her leaving Mayo and what our future surgery plan can be since she expressed how complicated it is to operate on Sara. She told me where she would be going and that one doctor that has been training with her for the past year is staying behind to lead pediatric cases. She will also take another doctor with her to train alongside her for a year, and then he will return so Mayo will have 2 doctors able to handle these types of cases. However, if something above their skill level should arise with Sara, she is more than happy to review the films and we can coordinate with her for surgery.

We went out of that appointment and right into an appointment with Dr. Granberg. She is Sara's urologist. If the surgery turns into percutaneous, she will be following Sara's care during her overnight stay at St. Mary's Hospital. She is also in charge of coordinating communication with the surgeon and the nephrologist for a follow up plan.

I asked Dr. Granberg about the possibility of a transplant down the rode. She pulled up Sara's images on her computer and said that while parts of the parenchyma (the meat of the kidney) are thinner, it is not thin all over. She wants us to put thoughts of a transplant out of our mind and deal with it at the time we need to. Dr. Sas will see indicators of diminishment and we can go from there. What a relief that it doesn't have to be something we discuss at every appointment or be made to feel like it is so urgent.

Finally done with appointments so we headed for an early dinner in order to enjoy swimming afterwards. Pannekoeken is my new favorite restaurant! The first night we had their signature dish, which is a pannekoeken--an oven baked Dutch pancake with either fruit or vegetables on top or baked in. Sara and I both chose the fresh option that had strawberries cut up on top. Then it came with brown sugar and sour cream to sprinkle on top.

In the middle of dinner, it started to downpour rain and thunder and lightning. Sara sighed and said, "Oh, great." Apparently to her, that meant we would be spending the night in the restaurant because there was no way she was going outside. I considered buying an umbrella but it finally let up to a sprinkle and I headed outside. But I kept hearing this nagging voice behind me..."Mom, where are we going? Mom, we're going to get wet. Mom!"

Fun in the pool and she fell right to sleep by 6:30.  I packed a backpack with all the supplies we would need just in case the surgery turned into an overnight hospital stay. I called the surgery hotline at 8:15pm to find out we had to report the next morning at 6:00am. We walked to the hospital thru the underground subway level and headed up to our room on the 6th floor. To pass the time, we found a spider clinging to his web outside the window and made up stories about why he was there and why he wasn't moving. It was pretty windy so Sara was convinced he was scared. Then he was hungry and had ordered Jimmy John's. I guess our giggling was too loud because the nurse closed our door!

After an hour they finally took us down to the 2nd floor for pre-op. 6 different people came in and asked Sara's name and date of birth. I have no idea why that many people need to come in just to ask who you are and if you know what is being done. 3 of them were anesthesiologists. The first anesthesiologist was...well, the worst experience I have had at Mayo so far. He wasn't comfortable talking to Sara and led the conversation with asking me if she needed a liquid sedative to start relaxing her before she went to the OR. I told him no and explained that she has been thru many procedures since she was 3 and she does not have any fear or anxiety about any of it. Instead of taking my word for it, he questioned me 2 more times about having her take something and asked twice if I should go into the OR with her so she wouldn't be afraid. I could tell Sara was starting to feel nervous about his assertiveness and I was on the verge of asking him to leave.

At 8:00 they finally took Sara back for surgery. Why we need to come 2 hours ahead of time to spend 75% of our time just sitting around is beyond me. I headed to the cafeteria for breakfast and then up to her room to set my things down. The nurse was nice enough to turn down Sara's bed and make it more welcoming for her. I was also shocked to see that the spider we had monitored for an hour was now gone. Maybe he ate his Jimmy John's and left!

Surgery started at 8:40. I went out to the waiting room on her floor and watched TV about 2 guys driving the Oregon trail looking for old artifacts to buy. I started reading a new book about how to pray for my kids. I made small talk. I looked at the electronic board to see if there was any update. I prayed. Finally, after 2 hours a nurse updated me that Dr. Krambeck was finally done on the left side and the percutaneous procedure was not necessary and she was starting on the right side. What wonderful news!

11:30 the electronic board said surgery was done.

11:40 Dr. Krambeck called me to give me an update.

12:00 I finally pestered the nurses enough so I could be with her in recovery. Sara was doing well with minimal pain. Just tired and quiet. There was a second nurse there who was finishing up nursing school. It was a good training opportunity since they don't get many pediatric cases at Methodist Hospital--they are usually down the street at St. Mary's. The challenge with that is that they couldn't find a small enough dosing syringe to give Sara pain medication when she asked for it and when I said Tylenol would be just fine for her, they didn't have any liquid Tylenol and the pharmacy had to courier it down.

1:30 Sara was back up in her room on the 6th floor. It would have been sooner but Dr. Krambeck forgot to input orders for her to be released from recovery so we had to wait for her assistant to get out of the next surgery. Sara went to the bathroom, which was quite painful, and settled into bed to enjoy some apple juice and jello. That back pain while urinating persisted for 4 days until her body finally got used to the stents being in place and how the urine flows differently. I got her settled in bed for a short snooze and headed out for some quick lunch. The cafeteria was closed so I walked across the street to Pannakoeken for an awesome cheeseburger and waffle fries.

3:00 Dr. Krambeck came in to speak with me in person about how things went. There were 3 spots so closed in the left kidney from scar tissue (probably from her surgery in Boston when she was 3 1/2) that it was just a pinpoint opening. She had to laser them open and then dilate with a balloon. She did not think she was going to get the upper pole open but she worked for a long time and finally got it. Once it was lasered open, she found hundreds of stones and not just one big one. Dr. Krambeck believes that scar tissue is what is causing the stones to be worse on the left side. It is closing off pockets in the kidneys, causing urine to sit in there instead of drain. That urine then forms stones. One stone was embedded but she could barely see it and was able to scrape at it and get it out. She is more concerned about the stones in the collecting system because they can grow and then cause a blockage when they try to move. She isn't sure if embedded stones will grow or if they eventually will cause a problem in the organ. On the right side, she only took out 1 stone and all the others were embedded.

This is the photo she drew on the dry erase board to show the challenges she had.

The areas I circled in red are where she had a pinpoint size hole as a passageway that had to be lasered open. The blue were the locations of the kidney stones. The yellow is the stone that was embedded. If Dr. Krambeck had just gone with the percutaneous option, she would never have seen how closed off those passageways were to know that is causing such extreme issues. Another way that God is in the little details.

Dr. Krambeck is concerned that the scar tissue on the left will reoccur. She wants us to return to Mayo in 6 months for an Excretory Urography (EXU) functional study with dye. That will show if they stayed open or if they closed again. If they closed, we can consider lasering them open again and maybe it will stay one of these times. The only other option is an extreme reconstructive surgery and there is no guarantee that would be successful. She told Dr. Granberg, the urologist, what to look for and when to reach out to her at her new hospital. She put Sara on restricted activity for 1 week because she didn't want a chance of the stent to rub and affect the spot she lasered open. Her surgical notes indicated the largest collection of stones on the left was 2cm (over 3/4") and 1mm on the right and she had "severe left infundibular stenosis".


4:00 We were finally released to go back to the hotel.

Thankfully, we were able to just take the wheelchair with us back to the hotel. Sara decided on Jimmy John's for dinner. Since she hadn't eaten all day, I wasn't worried about the sodium in 1/3 of a sandwich. I thought she would go to bed early and fall right to sleep because she kept saying how tired she was but she tossed and turned for 2 hours. She also asked me to sleep with her so after I finished my work on my laptop, I crawled into bed with her and prepared myself for an unrestful night of sleep. She woke me 3 times either because she had to go to the bathroom or was in pain.

At 6am Sara woke me again to ask if she had slept long enough. I asked her to sleep until 6:30 and of course at 6:34 she woke me again saying she was starving. We headed down for breakfast. Even though she said she was so hungry, she really didn't eat much. We went back up to the room so I could shower and Sara decided she wanted to go to Dunkin Donuts and have me push her in the wheel chair thru some shops. She picked to sit in the same hot pink chair as one of our last visits! Just a plain glazed donut made her happy.

We decided to take a stroll outside since it had stopped raining. Just a few shops down, a woman coming out of her eyewear shop startled us, bent down to Sara, and asked if she had a pair of sunglasses. I wheeled Sara inside while the lady explained that it is their policy for every child to get a free pair. She pulled out a box of 6 different colors and let Sara pick. They were rubber so they wouldn't break and polarized! Sara thought that was pretty neat.

We went on down the block and found some neat fountains. I am always amazed at all the landscaping around the hospital and how nice they keep it.

By 10:00 Sara said she wasn't getting tired but she WAS tired and wanted to go back to the hotel room. She walked right in the door, crawled into bed, and fell asleep for almost 4 hours! When she woke, she said she wasn't hungry but I was starving so I finally convinced her to go to the hotel restaurant with me for lunch. She ate about 2 bites. It really wasn't very good and the service was terrible. We headed back upstairs to watch some TV and got interrupted by a very loud noise. The fire alarms were going off and they were asking everyone to leave the hotel as a precautionary measure. Thankfully, the elevators were still working because I don't think she would have made it down 7 flights of stairs without me carrying her. Quite the mayhem on the street of people outside taking pictures, and a crew of 3 firefighters entered the hotel in full gear to search every floor.

I had to send that picture to Adam so he could see the Hulk was driving the fire truck! I pushed Sara in the wheelchair around a few blocks until we got the all clear. We headed back up to the room to relax for a bit again.

Sara finally decided she was hungry so we headed out for dinner at 6:00. I convinced her to give it a try walking on her own since we were going just a few blocks. We picked a nice Italian restaurant and she chose to eat outside and enjoy the weather.

Even though she said she was starving, she only ate 1 slice of bread and about 5 bites of lasagna. We have been keeping her pain under control with Tylenol every 4 hours and Oxybutin 3 times a day for bladder spasms until her body gets adjusted.

Thursday morning we went to breakfast and I packed all our things. We ventured out for a walk and some window shopping but she still wanted to be pushed in the wheelchair. That was fine as we would be gone a few hours before checking out of the hotel. We found these great statues of the Mayo brothers. The history is rich in this area and the philosophy of the Mayo brothers still carries on today.

We found a neat kitchen gadget store and a fun toy store to browse. A landscaper was planting annuals around the campus and it was a beautiful sunny day. It was time to get back to the hotel to check out and head to lunch. Pannakoeken was close by so why not go there one more time and eat outside! We took our time and then relaxed in the hotel lobby for 30 minutes before our shuttle turned into limo ride to the airport to catch our flight mid afternoon. A quick 20 minute flight back to Minneapolis and a 3 hour layover. We ate dinner in the airport. Sara didn't even finish 1 slice of a personal size pizza. We went back to the bookstore to enjoy some reading. Sara was getting pretty tired from a long day and tried to sleep for a bit on the floor at our terminal gate while waiting for our 8pm flight home. She tried really hard to sleep on the plane but couldn't get comfortable. We were taxiing on the runway for so long that she thought we had already flown and then landed again! It was really great to get back home and tucked in bed just before 10pm.

Friday morning we slept in until 7. Adam gave me our welcome home present--apple pie that he had baked with the sitter!

I was making breakfast for the big kids when I see the box of cereal slowly move off the counter. Apparently Evan is getting quite the reach with his tiptoes!

It was a long week. We got good news to put a kidney transplant out of our minds for now. And we got bad news. Not only do we still have to figure out how to get the right metabolic balance for Sara's urine concentration to stop making stones but we have to pray fervently that her scar tissue areas remain open for urine to drain from her kidneys properly.

Next steps are back to Mayo Clinic on June 27 for bloodwork and to meet with both the nephrologist and the urologist. The next day she gets her stents removed. Quick trip this time around. 6 weeks after that she will need a follow up ultrasound to see how things are going. Hopefully we can do that locally and send the images up there. And then the EXU in 6 months, maybe around Thanksgiving, to see if those 3 areas remained open.

Sara is doing great and has been off any pain medication for a week now. She is back to her normal activities. But the more active of a day she has, she will have blood in her urine again from the stents rubbing. I am thankful for all the prayers we received and how smoothly things went.

First lost tooth

Sara has been working on wiggling her first loose tooth. For weeks. Probably about 6.

4 weeks ago the new tooth started popping thru behind it. She has really been trying hard to get that old tooth out. For the past week it seemed like it was barely hanging on. Two different nights I twisted it and pulled as hard as I could, which made her cry. She finally asked me to call the dentist and have it pulled.

We went to the dentist this morning and she was sure if we waited a few more weeks that it would fall out on its own. I asked Sara what she wanted to do and she wanted the dentist to go ahead and pull it. I think she knew how much it was hanging on more than we did.

The dentist numbed the area with a topical ointment, sure that it would take a simple yank and out it would come. She tugged and tugged. Sara started wiggling her feet, which is her sign that her pain tolerance level has been reached. She asked for something else to help with the pain so the dentist gave her a shot in the area to numb it. More tugging and it still wouldn't come out. She finally had to get a forcep tool to grab onto it. The dentist admitted she was wrong and the tooth was attached much more than she thought.

Sara was so happy to have it over with! She got a little container for her tooth and took it to school to show everyone.

You can't even hardly tell there is a hole there because the new tooth was up so far.

Now to start working on the tooth next to it that is barely wiggly but the new one is also already poking thru.

Mayo follow up--not quite stone free

I picked Sara up from school yesterday afternoon to catch our flight to Chicago and then Rochester for our first follow up visits with Mayo Clinic since her surgery. She was so excited to have girl time and to fly.

She was an excellent helper thru the airport and wasn't overwhelmed even in the chaos in Chicago. She thought looking at the clouds was so neat, like a land of snow in the sky. And we thought we were probably a little closer to Grandma!

Shannon had reserved a taxi for us when we got to Rochester that would take us to our hotel. The driver surprised us both with a Snickers bar! And it was an extra treat because it was the first time Sara rode in a car without being in a car seat. We got to our hotel around 7, had to change rooms because it didn't have a refrigerator to store Sara's meds, and then got a sandwich from Jimmy John's. It wasn't very good but it was quick. Sara wasn't in bed until 8pm and 6am came early this morning when I woke her.

Quick breakfast and we left for our 7:15am ultrasound appointment. We stayed at the Kahler Hotel this time, right across the street from Mayo. It worked out great because we have been able to walk everywhere thru their underground walkways.

The ultrasound was a little hard, a little disappointing. It was the first time we have gotten a peek inside since Sara's surgery. They did not do any imaging after the surgery and just felt she was stone free based on looking around with the scope. I could tell there were a few times that the tech stopped to measure a stone. At the end she needed some more images after Sara emptied her bladder. I remembered we needed to provide a urine sample after the ultrasound and was able to coordinate with the lab department in the same area to get a specimen cup.

After we were done, we headed for bloodwork. Not the greatest of days for that. Sara warned the woman that her veins were small. We should have also warned that her veins roll. Multiple times. After digging around in and out with the needle 3 times, the tech pulled a cord to request assistance. I know what it feels like to have someone digging around in my arm for a needle and Sara didn't even flinch. Just as the helper walked in, the tech poked one more time and got the blood. Sara earned herself a glow in the dark duck and a rubber turtle. Thankfully, that satisfied her!

We have always enjoyed walking thru the lobby and today was no different. Someone was playing the piano every time we walked by and at one point a group of 4-5 people were standing around it singing. Many were gathered to listen and even record video.

Off to our Cinnabon treat and some shopping. We went in a cool shoe store and bought Dad some socks. Then we enjoyed a fun kids store and bought both Adam and Sara a present. Next was browsing thru some art galleries. We went back to the hotel room to drop our bags and then walk back for our urology appointment.

Sara kept telling me she wanted to go outside for some fresh air. It was 40 degrees outside and it sounded like a better option in the afternoon so I guess it slipped my mind and I headed up to the appointment with Dr. Granberg. She stepped off the elevator and got quite upset with me..."Mom, I said I wanted to go outside for some fresh air!" I looked at my watch and saw we still had time so I said okay and got back on the elevator. I tried to go out in the seating area by the flowers but the door was locked. Sara's shoulders slumped like she was never going to get outside. We walked up another flight of stairs and went out the door to the street level. She took off her backpack and handed me her thermos and announced she was going to run...and off she went! I stood there watching her and got teary eyed. Just 2 months after multiple days of surgeries here she was just running for the joy of it.

After her run, we headed back upstairs to meet with the urologist, Dr. Granberg. I can't believe with the busyness of this place that the doctor was actually on time and we waited less than 5 minutes for her to come in the room! She reviewed Sara's ultrasound with us. It is very hard to compare the ultrasound to her previous CT scan because the CT scan is able to show specific layers but you can't really tell depth in an ultrasound. The right kidney has a 2mm stone in the upper pole as well as another one and a 5mm one in the middle. Dr. Granberg looked at the images with Dr. Krambeck and they felt all of those stones are in the meat of the kidney and not in the collecting system so there is no concern with those.

The left kidney is the one that had 2 surgeries when we were here in September and is not formed like a typical kidney. The upper pole is dilated, which typically means something is causing it to be irritated. Sara's kidneys have been dilated for years but if the surgery truly made her stone free, then we should see that dilation diminish. The ultrasound did not show a stone in that area so we aren't sure why it is dilated right now. There is one stone of particular concern that is 7mm x 7mm, or slightly more than 1/4 inch in diameter. It is in the collecting system and it is slightly larger than the previous images so it was missed during surgery. 5mm is typically the limit of what you can pass and anything larger will eventually need surgical intervention. There are also some smaller stones scattered about. Of course I am not excited about already knowing that another surgery will come down the road. We are just hoping that it stays put for now because if it tries to pass, it could cause a blockage.

Her creatinine levels are the same as before, which reflects that her kidney function remains stable and the tubes inserted thru the meat of the kidney for the percutaneous surgery did not diminish their function. That is great news.

At this point they do not want to do any surgical procedures and are letting Dr. Sas take the lead with assessing how she stands metabolically.

We enjoyed a little soup and sandwich for lunch, shopped a little more, and checked in for our appointment with Dr. Sas in nephrology. Again, they called us just 5 minutes after our appointment time and he came in just a few minutes after the nurse left. He sat down in his chair, looked right at Sara and said "First of all, I have to ask you the most important question--what are you going to be for Halloween?"

We started by talking about Sara's water intake and how hard it is to monitor it when she is at school. It is totally out of my hands and she is only 6. That is a lot of responsibility for someone so young but we don't have any other choice. He told us about a new water bottle product that is a smart bottle and reports how much you drink. We may check into that.

He then started talking about her lab results and metabolic issues. First, her calcium is significantly better, which means increasing her Diuril medication is working. That was great news.

On the flip side, her sodium was really high. I was quite surprised by that because we have made changes in her diet and I thought her intake was within the range he asked for. We will be monitoring it much more closely.

Next we talked about potassium and magnesium. Both reduce the risk of stone formation. In prior labwork, both of those were more than adequate but now they were both low. He gave me some dietary sheets to give me ideas on foods that are rich in those nutrients. Again, that was perplexing to me because her diet really isn't any different than before, other than the high sodium items we have replaced with lower sodium like butter, ketchup, and bread.

Her citrate levels were also much lower, which could have just meant she didn't drink orange juice for breakfast that day.

Her brushite and calcium oxalate levels were higher than before but that could be because of a day with lower water levels and higher salt intake.

Is your head spinning? Mine is. Keep that fluid intake high, minimize the salt even more, eat more foods rich in potassium and magnesium and keep up on the citrates.

In summary, she is not significantly worse and we can consider it to be a modest victory. Dr. Sas thinks we are on the right path, even though we don't have any answers. The goal is to get to the right balance so that the 7mm stone remains at 7mm and no others form. That is when we know we are doing the right things.

He wants us back in 6 months for another 24 hour urine test, bloodwork, and comparative ultrasound. Not the best news I was hoping for but not the worst either.

We headed back to the hotel to change into our swim suits. We got to the hotel elevators and I heard this strange noise behind me. I turned to find this woman just sobbing uncontrollably as she approached us. I asked if she was okay. Now, for those who really know me, you understand just how odd it is that I talked to the woman. I am very much an introvert and keep to myself, even if I see someone I know, let alone talking to strangers. But I continued to ask her questions and learned that her car had broken down and it was towed with all her belongings in it. She spent the rest of the money she had in order to get it fixed and now she had no money to get back home to Wisconsin. She stepped off the elevator into the lobby and turned, while still crying, to tell me to have a good day. I didn't say anything and quickly as the door was closing, I said "Would you like to come with me and I will give you some money?" She was shocked. I told her I didn't have much cash but I probably had $50. She waited outside my room as I found my wallet. When I opened it, I found that I had $70. I paused, knowing that I told her I had $50 and I still had to pay for cabfare to the airport tomorrow. I pulled out everything I had, folded it in half, and handed it to her. She asked if she could give me a hug and walked off down the hall, crying and muttering "amazing." Sara looked at me and said "I can't wait to tell Dad about that!" Thanks, God!

We got our swim suits on, grabbed our map, and headed out. The pool at the hotel we are staying at is under repair but we could walk to the sister hotel thru the underground walkways and use their pool. We zigged and zagged and found our way there, followed signs up to the 10th floor, then a flight of stairs, and were met with a locked door. Back down to the lobby to explain our situation and they gave us a special temporary key card. We retraced our steps, opened the door, and...

There is Sara at the back with her arms in the air exclaiming that she has the pool all to herself! It was a neat rooftop pool on the 11th floor with a giant skylight over it! Very cool!

We swam for a bit, enjoyed some time with another family who had a little boy in a wheelchair, and found our way back to our hotel to figure out dinner. Sara didn't feel like walking anymore and was winding down from the day so we ate at the hotel restaurant and split chicken parmesan. Pajamas, meds, and read part of a book together before tucking in bed.

Another memorable thing from this trip is that Sara has been working on her first loose tooth. She has 2 loose at the same time on the bottom but a new one is already poking thru quite a bit. Every time I look over her fingers are in her mouth wiggling it looser.

I need to pause for a moment and talk about 2 other amazing behind the scenes things from this trip. First, I was having a hard time figuring out logistics since I am still nursing Evan twice a day. Shannon suggested just stopping because it would be too hard to travel with the pump and then figure out how to store it and I really didn't need another added item of stress. I conceded but was very emotional about it. I hate it that Sara's medical issues affect things with Evan and I not only did not want that to happen but wasn't prepared for it. I wasn't ever sure if breastfeeding would be "for me" but have found that it is amazing and really enjoy that time together with Evan. It was kind of the last pregnancy piece remaining that I would never get back and I was feeling very emotional about that. I talked to a fellow twin mom and thankfully she was very encouraging to push thru, especially with cold and flu season upon us. I packed the pump and have been able to store the milk fine and will get it home in a cooler with some ice packs. I am so thankful for her support, more than she can imagine!

Second, I am thankful for my Aunt Robyn, who was able to step in and be at my house while I was gone. She has cared for Evan, gotten Adam ready for school and on and off the bus, done laundry, organized some kitchen cabinets, cooked amazing meals (including a pumpkin pie), and cleaned off my kitchen counters which have been a disaster for months. For the first time ever, I am coming home to this amazing gift of my house looking better than when I left it! I feel really blessed.

This whole trip has just been confirmation, again, that we are in the right place. Today, for the first time, I really felt the sense that I am not just here to solve a short-term problem in conjunction with our doctors at home, but that Mayo is our primary care provider.

Thursday's surgery--beyond great!

Thankfully Sara's gauze dressing held all night and she got a great night of sleep to prepare her for surgery again. She didn't even hear my 5:30 alarm go off or the breast pump going so she was able to sleep another 30 minutes.

Three EMTs arrived around 6:30 to load her up and take her back to Methodist Hospital on Mayo Clinic's campus. This crew was very good at interacting with Sara and one guy in particular had a 5 year old daughter so he could relate. Sara seemed particularly quiet this morning and they were great getting her to tell them some jokes.

What did the 0 say to the 8? Nice belt!

Why did Earth stay away from Saturn? Because it is gassy!

Thursday morning's prep time was soooo different than Tuesday morning. No hustle and bustle of people in and out. No nurses taking vitals and asking a million questions. No visits from 3 different doctors. Dr. Nemergut, the anesthesiologist came in. He was already familiar with Sara from Tuesday so he didn't have many questions either. We talked the most about her sensitive skin and different ways he could apply tape to protect her. Then we waited. And waited. And waited. Sara commented she thought it was silly to come over so early just to sit around and not do anything. We read in her Ranger Rick magazine together. She was unusually quiet, even around just me. I let it be, knowing that she had been thru a lot and may be just processing another day of surgery. Dr. Nemergut came in again with his colleague. They were opening the door to wheel Sara out and he said, "Wait a minute! We need to get Cimba ready for surgery!" Then he found a hospital hat, gloves, mask, and even made him an ID bracelet. It seemed so unusal for him but his pause brought a smile to Sara's face. That was definitely a nice way to send her off at 8am.

As they wheeled her off, I stood in her room not really knowing what to do. On Tuesday there was a nurse there to guide us but not today. I asked if I was supposed to follow them and they looked at me blankly. Another staff member stepped over and asked me if I knew where I was supposed to go. They pointed me in the direction of the elevators and I made my way to the cafeteria for breakfast.

I found a booth in the back corner and for the first time in this journey I was able to have a quiet moment. As a mom, I have had to be whatever Sara needed me to be. Even though Shannon is on this trip, he and I are tag teaming the kids so much that even he and I haven't had many moments to emotionally process all that is happening together. I found myself getting weepy. God knew and sent an uplifting note from a fellow twin mom at home!

I finished breakfast and headed up to the same waiting area as Tuesday and requested Sara's 5 digit number so I could follow her progress on the monitor. Surgery started at 8:45.

Shannon and the boys arrived around 10. Time sure did pass more quickly with the little ones to keep track of instead of waiting by myself. Adam and I chatted for a bit and read part of a magazine. I changed Evan's diaper and started walking him in the stroller to see if her would fall asleep for a morning nap. At 11:15 I was heading back down the hall and the nurse informed me they had just closed Sara so surgery was over! For the first time on this trip I felt very nervous. Dr. Montgomery told us things were so complicated that the absolute best case scenario would be a 3-4 hour surgery. It had only been 2 1/2 hours so my first thought was it must be bad news and Dr. Krambeck was not able to get all the stones.

I kept walking the empty halls with my sleeping baby and then I heard, "Mrs. Mollenhauer?" I turned around to see Dr. Krambeck by herself looking her usual joyful and confident self. She asked "How are you?" I told her "I don't know, how should I be?" She answered with a big smile, "You should be great!"

What a relief!

She lasered the narrow passageways and was able to remove all the stones. "So you didn't have to do the second percutaneous procedure?" "Nope!" "And you were able to get out the really big stone thru the scope?" "I took out 8 really big stones thru the scope!" I'm tearing up again just thinking about my conversation with her in that empty hallway. For the first time Sara is stone free and Dr. Krambeck was the woman who was able to make that happen.

I went in the waiting room to tell Shannon the news and gather up our things. Within 10 minutes of being informed surgery was done they were already letting us know she was ready for us in recovery. We had to ask at the desk how to get to the recovery area because there wasn't a nurse to escort us. We went down one floor and gowned up. Shannon went in first to see her for a few minutes. Then we traded gowns because his was at his knees and mine was dragging on the floor! Shannon left with the boys to go outside for lunch and I went in with Sara to accompany her on transport back to her hospital room at St. Mary's. When I got back there, Dr. Nemergut had already released her for transport and the ambulance service had been called. Sara was very very quiet and didn't even want to shake her head to indicate whether she was in pain.

We got back to her hospital room and her nurse was shocked we were there already. An hour after surgery ended and she was out of recovery, transported 10 minutes away, walked almost 10 minutes thru the hospital, and transferred to her bed! On Tuesday she was in the recovery room for an hour before they even called for transport!

Not long after we settled in, a volunteer came in to say they would be playing Bingo in the play room. If Sara didn't feel up to walking down there we could turn on the TV and then phone in when we won. Sara perked up when she was the first person to win and she got to say "BINGO!" She picked a new baby doll as a prize. Adam arrived soon after and wanted to join in on the fun.

We discovered after putting the smallest hospital gown on her that she didn't have a gown on before but instead a shirt and it was long enough to be a gown! We had to swap this one out because it went down to the floor and she was tripping on it.

At 2:00 Evan was ready for a nap so we laid him in the hotel's pack and play that was still in Sara's hospital room while Adam and Sara went to the playroom. Around 3:30 Dr. Granberg (Sara's urologist) and Dr. Montgomery (her assistant) found us in the play room. They looked at Sara playing games just 4 hours after surgery and shook their heads. If she was able to keep food down and felt up to it, they were fine with her being discharged that night.

We talked about follow up needed. She had a bag attached to each side of her back that covered her incision to catch any seeping. We would have to empty it as needed and when it stopped draining we could remove the bags and just cover the incision with gauze. She also had a stent inside holding one of her kidney passageways open. That would need to be removed in 4 weeks and can be done in Peoria if they are willing because it is about a 10 second procedure under light anesthesia. Then 6 weeks after that Dr. Granberg would like us back at Mayo Clinic for an ultrasound to see how her kidneys look post-surgery, as well as a consult about next steps. We are hoping to also coordinate with Dr. Sas, her nephrologist, at that time.

Dr. Granberg commented on the uniqueness of Sara's left kidney and said we should not let anyone else operate on her other than Dr. Krambeck who is now familiar with the peculiar roadmap she has. It was interesting to hear the respect in Dr. Granberg's voice as she talked about Dr. Krambeck using highly skilled methods of moving around, dilating for access, and then lasering, that most doctors do not have the experience to perform. It was interesting reading Dr. Krambeck's surgical notes and stating she "spent significant time trying to find the upper calculi in her left kidney!"

Around 5 Sara got dressed in street clothes. It felt like it had been a long time since she looked "normal" and it was so nice!

 I took Adam and Evan to dinner while Shannon packed up the room. Adam gave me one of those "Mom, you promised...and we haven't yet..." so we took a stroll into the courtyard.

After heading back up to Sara's room, we learned discharge would be delayed even longer because they wanted her to eat more. Really? She wasn't nauseous after surgery either day and she had eaten jello, a popsicle, apple juice, and goldfish. Apparently they wanted "food" except the cafeteria food really wasn't the greatest. I spent the next 30 minutes fighting with Sara to even eat 1 chicken finger. By the end we were both in tears because we just wanted to leave. Shannon had gone for a walk with the boys. Sara and I had a very mature girls moment while sitting on the bed. She was sobbing from exhaustion. I put my arm around her and talked to her about how she had been so strong all week and I was really proud of her. But sometimes you just need to take a breath and cry if you need to, that's okay. She leaned her head against me and cried. After a few minutes I asked her if she was ready to go home. She shook her head yes and I got the nurse to start removing her IV tape.

The next 30 minutes was spent using numerous adhesive remover pads to get the tape off both her wrists that could have still been stuck there at Christmas. The nurse was not very sensitive to Sara's twitching and turning in pain. Twice she said she needed a break because she couldn't stand it anymore. She screamed and cried in pain at the end because I think the nurse pulled on the needle instead of the tape. So hard.

Finally at 8:30 the room was cleaned out and we were ready to go!

Adam was so helpful the entire trip! It really was the right decision to take him. He was sensitive to Sara and loved on her. He kept wanting to push her wheelchair, carry her bags, etc. Even at the airport I asked the two of them to stand and wait for us and I returned to find them holding hands. It melted my heart. Evan was very laid back and just went with the flow. It was a very difficult trip but could not have gone any better!

Shannon was able to get our flight home changed from Sunday night to Friday night, at no charge! What a blessing! It was so nice to have Sara laying in bed next to us in the hotel, sleeping peacefully. She and I woke at 6am Friday for her medicine and we went to breakfast together. The rest of the morning was a scramble to pack.

Again, Adam wanted to push Sara in the wheelchair when we left the hotel. As we were leaving, a boy and a girl were entering with their parents. We had been fighting with the kids over the balloons they had gotten. Of course they wanted to take them on the plane and we said no. Thankfully God sent children that we could bless and the kids enjoyed bringing a smile to someone else.

We made it thru the airport pretty well except for the TSA agent who thought Sara was in a wheelchair just for the convenience of hauling our stuff. Then he looked and saw weird plastic bags of fluid hanging from under her shirt. Oops.

We arrived home safely around 5:30. My neighbor had picked a few things up at the grocery store for us and left Michael's Italian Feast spaghetti, garlic bread, and a sub sandwich for us. The food was still warm so we were able to walk in the back door and sit right down to eat. What a huge gift! HUGE!

Sara was actually so exhausted she was in tears so she laid down on the couch without eating dinner. Five minutes later I checked on her and she was asleep. We let her rest for a few hours and then moved her to our bed so I could help her with medicine and going to the bathroom in the middle of the night.

Saturday morning I spent 1 1/2 hours taking the bags off her incisions--tape is not our friend! If you have a queasy stomach you may not want to look at the next few photos but I wanted to document what Sara has gone thru. This is what Sara flew home with to catch any drainage from her incisions. The second photo shows her actual incisions.

She still has tape residue covering her entire back. We work on it little by little when she can stand it.

Sara was so excited to get flowers from Grandma Sue and Grandpa!

I think Adam was feeling a little left out over the past week as he kept asking to be in photos, too. This is one of my new favorite photos of the kids together!

There are many people to thank for helping in various ways. The Palms for watching our kitty, parasites and all, as well as providing lunch on Saturday and just going above and beyond any time we need it. Tammi for taking care of Ivy so we didn't have to board her again, getting the mail, groceries, and warm dinner Friday night. She is a neighbor I want to keep all for myself! So many people were praying, more than I even know. Thank you!

Sara is back to school and feeling her normal self. I have had to yell at her out the kitchen window to stop running as she is supposed to have restricted activity for 2 weeks! I can't believe her strength--she is truly an overcomer! Not only did she not have any pain medication other than 2 doses of Tylenol because it hurt when she peed but she never complained or freaked out about anything. She had tubes hanging out of her back with bags of blood attached and rolled over from side to side like it was no big deal. She didn't panic when she went to the bathroom and it was bright red. She carries a spirit of peace and calm beyond her years. She teaches me things...I thought it was supposed to be the other way around.