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!

It's the Holiday Season!

Christmas is just right around the corner, and we are definitely in the festive mood around here.  I love watching the joy and wonder in a child's face.  There is definitely a sense of magic this time of year!  The biggest and most exciting thing for us lately is that Leah finally got her new wheelchair.  We are so, so happy that it's here.  It came on Thursday, and she spent the entire weekend exploring new parts of the house, including new heights, that she hadn't been able to access before.  She helped out with setting the table and doing dishes, and got into a bit of trouble when she pulled things off the counters.  New problems that we hadn't experienced before!  She's taller than she is in her walker, and even with the rolling stander, her forward reach is limited.  This means much more freedom!  It also means that we need to set higher expectations for her to start helping out more around the house and being more independent, as a normal 4-year old would do.  

The other part I love about the chair is how light it is.  I can pick it up with 1 hand, and she's able to go much faster.  It definitely gives her a greater sense of mobility and independence.  Today she used it for the first time at school, and she said she had a great day.  It also comes with a pushbar, but I'm hoping that we won't need it much and that she'll be able to steer herself much more.  I want her to feel normal, and now she's sitting up taller and can be at the same height as the other kids.  It's so, so important for her to continue seeing herself as a peer, an equal to other kids her age.  This goes a long way in making sure she can keep up.

The new wheelchair was a shining light in an otherwise yucky week.  Leah woke up last Tuesday morning with a fever and was sick all week.  Her fever spiked at 103 on Wednesday, and didn't break until Friday.  Not the time of year to be getting sick!  Ty went to her school on Thursday to pick up all of her gear, and the class was only about half-full, as many other kids were out, too.  She had a fever and awful cough, so thankfully she's well on her way to recovery... except Ty and I are now under the weather.  Here's hoping get better soon before Christmas.  

Merry Christmas and Happy Holidays to all of our friends and family.  We have been so blessed again this year, and hope for continued fortune in 2016.  Be safe, and enjoy being surrounded by the ones you love.  Thanks for your support of our family!

Birthday Girl!

Where did the last 4 years go?  On Tuesday, our darling little girl turned 4.  For the most part, I loved 3 so much.  She got much more verbal and independent, and aside from a few little tantrums, 3 was a good year for her and us.  She woke up on Tuesday morning and told me that she felt bigger.  So sweet!  Instead of 1 party this year, we had several birthday celebrations.  We started with breakfast last Saturday morning with 2 sets of grandparents, and then we all went to a wheelchair basketball tournament at a local high school.  There were teams from all over the Midwest, so lots of wheelchairs!  It was pretty neat to see.  We were there to watch the little kids (5-10 years) play.  This is a team through the Courage Center, a local organization who does adaptive sports, and where we do swim therapy.  The team practices there on Saturday mornings, so Leah gets to see them after we swim.  Many of the kids on the team have Spina Bifida, so it's also fun to see the families that we know. 

The kids were happy to have Leah there cheering them on.  She went out on the court with them while they practiced and did some passing and shooting, though I say that loosely.  She was more interested in saying hello to everyone and being social.  My first inclination is to say that she did not get much athletic ability from Mom and Dad, but maybe she will surprise us in the next few years. 

Last Saturday night we cooked a meal at home and baked cupcakes with Grandma and Grandpa, so that was celebration #2.  We also opened up more presents.  She was more excited about opening the gifts than what was actually inside.  As soon as she opened one, she immediately asked to open another. 

Finally, on her actual birthday, I went to her school to read a story to the class and stayed for snack time.  We brought Happy Birthday Cupcake, which is a really cute book.  She chose to bring Skittles and fruit to share with her friends.  I liked visting her room and seeing all the kids interact with each other.  I also got to see that Leah was the last to finish her snack, while all the other kids had gotten up to find other things to do.  For dinner, a third set of grandparents came with us to eat at Leah's favorite restaurant where she ordered her favorite meal, macaroni and cheese.  Then we came home to open more presents and eat more cupcakes.  It was a great way to celebrate our favorite little girl!