We Made it Through

Surgery #4 is in the books and we're on the mend.  And Leah is amazing!!  We checked into Minneapolis Children's Hospital on Monday morning around 8:30.  They called us back shortly afterwards to get prepped for a 10:15 surgery.  Leah got into a gown, and many different doctors and nurses came to talk to us about the surgery and what would be happening that day.  Unfortunately they were running behind so Leah didn't get called back to surgery until 11:30.  She was such a trooper and didn't complain too much.  She was a little bit hungry and restless but otherwise she did great.  

Finally it was time to go, and she started crying when they came to get us.  I was able to carry her back into the OR and laid her down on the table.  They gave her some laughing gas to drift off to sleep, and she's still talking about how the gas smelled like nail polish.  Then the next thing I knew, she was out.  It doesn't matter how many times I've done it before or how much I prepare myself, leaving her on the table is a heart-wrenching thing to do.

Her surgery itself was just over an hour long.  Dr. Vandersteen came out just after 1:00 to tell us how things went.  He said it was exactly what he was expecting in there, no surprises.  He was able to repair the ureter valve that goes from the kidney into the bladder, and since he was in there, he gave her bladder a shot of Botox.  The Botox will help relax the bladder and let it fill with more urine, and also stop it from having spasms that create the reflux.  All in all, the surgery was very successful and he thought she'd make a full recovery.  We were able to see her about another hour later after they finished waking her up in recovery room, and went up to her room.  She was staying in the Pediatric Intensive Care Unit (PICU).  This is where she was 4 years ago for her last surgery, but my view of the PICU is very different with a 5-year old than it was with a 1-year old.  For one, she had a regular bed that I could climb into and snuggle her instead of a crib.  Also, there's so much more to do to occupy a 5-year old, like BINGO, arts and crafts, movies, and jello.  The jello was very high on her list of things she was excited about.

She was completely awesome the whole time.  Monday night I slept in her room, and the nurse came in every 4 hours to check her stats and give her more pain meds.  Each time, she took her medicine like a champ and went right back to sleep.  She never got crabby or fussy about anything.  I'm so proud of her.  She even got a special visit from Santa Clause!  I know I originally didn't want to spend the night in the hospital, but she still had an IV and a catheter in, so I felt more comfortable staying.  She had to keep the catheter in overnight so we would have had to come home with it.  I can do intermittent cathing but I was a little freaked out by the bag.  It was good to keep her there and make sure everything looked good.  On Tuesday morning her catheter came out around 9:45 and she had to go potty on her own to make sure her bladder was working and she was getting enough liquids on her own without the IV.  All was good so we went home.

We had a quiet day at home yesterday, making sure she was managing her pain and staying hydrated.  She's been doing so great and had a good day.  Today she was doing better and decided to take her to school for a few hours to get out of the house a bit.  She's still getting some pain meds but I'm trying to slow those down.  She complains a bit of being sore where her cut is but that's not happening as often.  I am a bit concerned about some bruising down by her incision site, and it's starting to get better but something I'm still watching.  We'll go back to see her doctor in about 2 months to get additional kidney tests done to see how much better the kidney is looking.  For now, I'm cautiously breathing a sigh of relief that things are going well for our favorite little girl.

Surgery #4

Leah will be having surgery #4 tomorrow morning.  First of all, please send extra prayers our way for our little girl and her surgical team.  This surgery is called a Left Ureteral Reimplantation.  

Since she was born, we have been watching her kidneys to keep them healthy.  They were looking really good until about a year ago.  We started noticing that her bladder was refluxing urine into her kidney.  We started an intermittent catheterizing program earlier this year, and right away it looked like the reflux was going away.  Yay!

However, in August we saw that the reflux was back so she had more intensive tests done.  Those tests showed that her left kidney was slightly smaller than it had been in previous tests (it's supposed to be growing, so that wasn't good), and that there was a lot of reflux.  The test also showed that her left kidney is only doing 20% of the work and her right is doing 80% (it should be 50/50).  In short, her left kidney is being damaged, and we have to fix it so it doesn't get worse.  Her kidney likely won't get better so we can only prevent any further damage.

During the procedure, the surgeon takes the ureter, which is the tube going from the kidney into the bladder, and reimplants it into the bladder.  It will hopefully prevent any more urine from backing up.  Her surgeon said it has a 98% success rate, and that should stop the reflux.  The good news is that she is not currently in any pain, so this isn't affecting her in any way right now.  We also don't have to do anything different after her surgery except continue to monitor the kidneys.  She'll likely have to stay overnight in the hospital, maybe even 2 nights, but we'll decide what is best after the surgery.  We are much more comfortable at home so would prefer to come home earlier if she's doing well.

Please send us some extra prayers for Leah on surgery #4, for us, and for her surgeon, Dr. Vandersteen and everyone who will be taking care of her in the hospital.  Hopefully everything will go as planned and she'll have a quick recovery.  Hospital stays are hard for us, and will likely be even harder with a 5-year old.  She's anxious about it, and we've been talking about what it's like to be in the hospital and practicing what will happen.  There is some excitement about the promise of juice boxes, pudding and Jello-O!  I'll do what I can to update everyone here on our progress.  Children's Hospital blocks blogger, so I may have to wait until we're home to post anything new.  In any case, prayers and good thoughts are always welcome!

5-Year Pictures

This past weekend we had some family photos taken.  The last 2 years we've had them done on vacation but we didn't get away this fall so they were done around here.  Here are a few of my favorites!

((5)) FIVE! ((5))

I know I've been radio silent since the spring.  I promise more to come.  For now, please help me wish Leah a very happy fifth birthday tomorrow.  Our favorite little girl turns 5.  Where did the last 5 years go?  5 years ago tonight I was just getting home from teaching religious ed at church, feeling pretty good.  Tired and a little achy but still good.  I thought I still had 5 days left until she came.  Turns out, she was ready, and she's been ready ever since. 

Happiest of birthdays to my silly, funny, bright, shiny, kind, compassionate, empathetic, hilarious, kind, smart, curly girl.  You've been changing the world since you came into it.  We can't wait for what's in store for you.  Mama and Daddy love you more than we can ever say!

Our Life in Pictures

We had a family vacation to Phoenix in April and did an overnight trip up to the Grand Canyon.  I had been when I was in high school and was very excited for a return trip.  It was a beautiful day and we enjoyed walking the South Rim path.  Leah's favorite part was the ice cream.

Leah and I also had a visit to Peoria in April where we reunited with the babies, Molly & Ava.  Though they aren't really babies anymore, now they're toddling around.

Spending a nice evening relaxing by the lake with some ice cream.

Leah and Jill have become good friends lately.

T-Ball!  Leah is on a t-ball team in a league for children with disabilities.  Here she is getting her hat and shirt, and then her first game.  It was pretty chilly that morning, even for Minnesota.

Leah and I took a field trip to the Mall of America and spent the afternoon riding rides. 

My Busy 4-Year Old

Hi friends!  As you can see, I’ve taken a bit of a break from the blog lately.  Do I even have any readers out there?  We had a pretty nice winter and spring.  Leah continues to learn and grow, and each day is something new for her.  But I will say that 4 has been the hardest age so far.  2 and 3 were a breeze, and now that she’s 4, she’s testing the limits a lot more.  I’m getting reports from school that she’s having a tough time with social interactions as well, things like hitting or saying mean words to others.  It’s coming from a place of frustration, she sees other kids get up and move around much more quickly than she can, and she can’t defend herself when they take something that she wants.  She’s trying to exert control over things, like choosing not to participate in a song or game for no other reason than she doesn’t want to.  It breaks my heart just a little bit to hear her say that friends didn’t want to play with her, or that she doesn’t want to go to school.  Our teachers are trying to work with her on things she can do or say that will make her feel better.  The school offers mental health therapy, so we have her meeting with a therapist once a week to help her deal with some of these feelings.  It’s been great because the therapist talks with her teachers about how she’s doing in the classroom and they can set goals with each other.  And the therapist picks her up right from her room, so one less appointment that I have to take her to!  As difficult as it is in the moment, I also have to remember that her behavior is very normal.  Isn’t that what we wanted?  A child who is so normal on every other front, and her frustrations are a reasonable output of her situation.  She knows she’s different, she is starting to understand that she gets around differently and she has to process those feelings and emotions.  I have to remind myself of that when I want to wring her little neck for sassing back at me.  Ahhh, serenity now!

 

Back in January, she had a Spina Bifida checkup.  The usual suspects of urology, rehab, physical therapy all came in for evaluations.  She had grown out of her old Hip-Knee-Ankle-Foot orthotics (HKAFO’s), so I wanted to get her a prescription for a new pair.  They looked at her hips and legs, and everything is checking out good for now.  Her skin looks great, so no pressure sores or breakdown of her skin.  That’s something that can lead to infections and issues, so it’s important to keep her skin healthy.  Her hips also look good.  Again, hips are known to be an issue for kids with SB, and right now hers are still staying in the sockets.  They do pop every once in a while, so we’ll continue with yearly hip x-rays to check them out, though it’s pretty hard to fix a hip issue easily.  We’re just happy that now we don’t have issues.  As we were talking about the HKAFO’s, they recommended Knee Immobilizers, which are much lighter than braces and could be a better option for her to get back into walking.  Unfortunately they didn’t work, as Leah needs much more hip support than they offered.  The really unfortunate part is that I took them home and got her into PT in the hopes that they would work, but ultimately did not.  Instead, here we are almost 6 months later and we still don’t have new braces for her.  They will be ready next week but we wasted a lot of time, and I’m really kicking myself that I didn’t get moving on it quicker. 

 

We also did new urology studies while at clinic, which put us on a new path when it comes to bathroom management.  She had an ultrasound done on her kidneys and bladder, which showed quite a bit of reflux.  That’s not good because the kidneys should be sending pee into the bladder, not the other way around.  So we had more intensive studies done to see the extent of the reflux.  It showed that her reflux was pretty severe in the left kidney.  Her urologist has always told us that her health is his job; her social continence is our job, so he had to step in because she can’t have that severe of reflux for a long time.  That was hard for us to hear because for so long, things were looking really good in her body.  We knew that we had to do something immediately to correct the reflux.  He gave us a few options.  First, we could have a surgery done called a vesicostomy.  It is where he would cut a hole in her bladder and she’d leak excess pee out of that hole.  That would clear up the reflux in a matter of days.  Then, after a period of time, it could be reversed and closed back up.  We initially thought that would be a great solution, until we realized that the hole would extend externally to just below her belly button.  Not a great solution for a 4-year old who is trying to get OUT of diapers, and not wanting to leak pee all over… which is what we found out is the reality of this procedure.  ICK!  But again, we have kidneys on the line here, so this was seeming like a viable option.  Second, we could insert a foley catheter, which is a permanent catheter and continually drains pee out of the bladder.  It would need to be changed weekly, and she’d have to double up on diapers, as it also comes with extra leaking.  Again, not idea for a 4-year old who wants to get OUT of diapers, not into more.  Our third option was a long shot.  It was to put her on a medication to expand the bladder so it can hold more pee and do intermittent cathing, which means cathing every 3-4 hours.  If it worked, her reflux would clear up AND she could start transitioning out of diapers.  After a lot of debate, we decided to open door #3 and do intermittent catheterizing.  Again, a long shot and we had a pretty severe case of kidney reflux to fight, but we agreed that we would try it and go to a more aggressive option if it didn’t work.  I’m happy to report that it was the right thing to do!  After a month of being on the medication and doing the intermittent cathing, the reflux went away completely and her kidneys look normal.  What a relief!!!  We’ve had to adjust medication and dosing to find what works, but she is pretty much totally dry during the day. 

 

The other thing we started was a bowel management program.  I’m not going to get into great details here because it’s kind of gross and it’s very private for her.  We were able to get approval from insurance to use the Peristeen method of cleaning out her bowels.  Look it up online if you’re curious.  It entails sitting on the toilet for about 30 minutes each evening, and she is able to get totally cleaned out.  That process was purely for social continence.  She could have gone her whole life without doing that, but eww, gross.  We all wanted her to stop having poop in her diaper during the day.  It took us about a month to figure out the system to get it totally right, but now we have a nice routine down, and she’s been (mostly) accident free.  I’m not ready to give up diapers altogether but she can now make it through the day in a pull-up.  And just like that, she’s (mostly) potty trained.

 

In other fun news, she is playing on a t-ball league for children with special needs.  This league is awesome, and they provide buddies to all of the kids.  Each game they are paired up with a high school volunteer who helps them hit, run and catch.  Mostly, Leah just likes being out there socializing!  As I was sitting there last weekend on a beautiful sunny Sunday afternoon, I watched with such pride and happiness.  There I was, in the stands, while my little girl was rolling around on the baseball field, like any other kid her age would be doing.  What a wonderful gift for me and the other parents to be able to sit and cheer them on.  I could actually have a conversation with the mom next to me, all while knowing that she’s being looked after and having the time of her life.  Her favorite part was getting a popsicle after the game, of course.  I know that we’ll never be a normal family.  It takes extra time and effort for us to do many things, and some things are quite impossible for us to do at all, but I had a glimpse of what it’s like to be normal.

Thankful

Happy new year!  It was a mighty eventful close to 2015, as it always is.  I don't know how we manage to do it, but every year we get sick right before Christmas.  Last year Leah was sick the day of my work holiday party, and we had a repeat offender this year.  The week before Christmas, she had a high fever and cough that I think turned to croup.  She missed 3 days of school, and would have been a 4th if we didn't normally have Fridays off.  She finally recovered in time for Christmas to come.  Ty and I also battled colds those last few weeks of December.  Icky!!  This was our year to be in Peoria for Christmas.  We drove down with the car loaded full to the max on Wednesday, just in time to arrive for the craziness of a Cunningham Christmas.  Ty left on Sunday morning for a work trip and then home to Minneapolis, while Leah and I stayed until New Year's Eve.  We had lots of cousin time, and I got to spend a good amount of time with my best friend and another high school friend.  All in all, a very successful and fun holiday!

We have so very much to be thankful for, as I reflect on another year of blessings and look forward to this new year ahead.  There aren't enough words to express how much I love our little girl, or how grateful I am for everything about her.  She is the sweetest, kindest, and gentlest person I have ever met.  Her sense of humor and laugh are infectious, and she has a stubborn streak that I mostly adore.  She has a fiery spirit and lights up a room.  Because she has Spina Bifida, she needs extra support in her life, which makes me ever grateful for where we live.  

Minneapolis, and, in particular, our little corner of this city, has been very kind to us.  In less than a half hour, we can reach all the doctors, therapists, and services she needs to treat the different parts of SB that we deal with.  Our school district is amazing, and provided us great early intervention services from birth-3.  Ty and I work about 20 minutes from home, and half-way to our office is Leah's preschool, which is the best, best, best place for a child with a disability.  Her school offers an inclusive preschool, so she is in a class with many normal kids and also some who have other special needs.  They have been incredibly accommodating with all of her needs, and are a true partner to us.  

Then there is Leah's overall general health, which *knock on wood* continues to be excellent.  With the exception of her cold a few weeks ago, she's been incredibly healthy.  No sign of a UTI in over a year, which I can hardly believe!  We made it through 2015 without antibiotics or any major trips to the doctor's office.  Her neuro exam showed that her shunt is working well, and her spine looks good.  We will return to Spina Bifida clinic in a few weeks to do more kidney and bladder tests and a check-up by the rehab and physical therapists.  I suspect we'll start our bathroom training soon, and she may need some new braces to continue her walking.  All in all, 2015 was a very good year for us.

Here's wishing all of our friends and family a very blessed 2016!