Health Update

We actually have been a bit quiet in all things health-related, thank goodness.  Leah had her annual neurosurgical visit and twice-a-year Spina Bifida clinic appointment last month.  As usual, we started out in Radiology at Minneapolis Children's Hospital.  She had a rapid MRI scan, which takes a looks at her brain ventricles to ensure they're still within the range we'd like to see.  It also shows her chiari malformation, that pesky little abnormality of her cerebellum.  The good things about the rapid MRI is that it goes fast and she doesn't need to be sedated for it.  The bad news is that she has to be totally straight-jacketed, in a loud machine where she can only see me through a little mirror, for 5 whole minutes.  She's still talking about how she was very upset being put into the machine.  The second test we did in Radiology was an X-ray of the shunt and tubing, which shows us where the shunt is so we make sure the tubing is still winding free down her neck and into her abdomen.  The MRI is a magnet, which could possible reset her shunt, so they also take a picture of the shunt valve setting.  

Following Radiology, we headed over to see Pete and take a look at the results.  All good!  The ventricles looked great, almost normal.  And not just Leah-normal, but regular non-hydro normal.  Her chiari is still there, and still big, but for the moment is not causing any issues.  Leah was her typical charming self with Pete, and he thought that overall she's in really good shape!  We'll see him again next year!  We went directly to Dr. Marker's office, and he was similarly pleased with how she's doing.  

We had made a change with the rest of her care and moved from Children's to Gillette.  While we absolutely love Dr. Nagib and Pete for neuro and Dr. Marker for general SB, we had not been happy with the physical rehab specialist or urology doctor at Children's.  After hearing a lot of great things from other families about Gillette, we decided to make the change this spring.  Last year I moved her Physical Therapy to Gillette and was so much happier with the level of care that we received, so I was optimistic about the Spina Bifida clinic there.  

Gillette's SB clinic is fairly new, only about a year old, but a lot of families had been migrating to them recently.  They also got some of the "kinks" out and we had a great experience.  Clinic at Children's and Gillette is basically the same process, and in both places they make it a one-stop shop for all the SB specialists.  They work together to discuss the best plan for the patient, and also make us only come in once to see everyone.  Right away, I liked Gillette, though they were running quite a bit behind.  The first specialist was a rehab doctor, who wanted to know all about Leah's health history and checked out her legs and body.  This doctor was a young-ish lady.  Then about 5 young-ish (I'm talking 30's) female doctors came in to talk more thoroughly about her legs, walking, and everything physical.  As a mom to a young daughter, I really liked seeing these girls, as I believe having strong female role models are great for Leah.  I met the chief neurosurgeon, who's also the director of the SB program, and talked with him while Leah had some hip x-rays done.  He was ok, but I definitely like Dr. Nagib better.  This doctor didn't give me a vote of confidence when I asked him if he was as good as Dr. Nagib.  

Her hip x-ray showed that both hips are still in their sockets.  Hip dislocation is very common in SB, and the bones can eventually find a new socket farther up the pelvis.  It's only a problem when the hips become uneven, which causes pain and scoliosis from the leaning.  Doctors used to do surgery to replace the hips, but the recovery was long and painful, and the hips would often fall back out of joint quickly.  Unless it's a problem, they'll leave them as they are.  Luckily, that's not a problem for her now but we will keep watching them closely.

Finally, we met with the urology doctor.  I really, really liked him!  His approach, his philosophy and general demeanor.  He told us his rules: he is in charge of her health; we are in charge of her social life.  He will defer to social life until health is compromised, which I really appreciate.  Right now, Leah is not cathed or on any kind of bathroom program.  I asked about it because she's 3 1/2 and starting to notice that she's one of the only ones still in diapers.  He asked me about UTI's, and whether she suffers constipation or other issues.  Our answer is that diapers are working just fine for her, and his response was that he can't offer us any other options that will make our lives easier right now.  She will need to be continent for kindergarten, which is 2 years away, so we'll wait another year before starting down that road.  For now, we keep doing what we're doing, as her health is good.

Our first Gillette SB experience was a positive one.  We will go back in 6 more months, where they will do some more tests on her kidneys and bladder as we move towards a bathroom program.  They also recommended we start Physical Therapy back up.  She's starting to slow down on the walking, preferring the wheelchair a little more often at school.  Could that be a typical 3-year old thing, or is she done with it?  She has a friend at school who uses walking sticks, and talks about wanting to walk like Bennett... maybe she needs more of a challenge.  We also want her to start learning how to get in and out of her wheelchair and onto the couch.

Whew!  That was a long update to say that she's doing great!  

The Anniversary

It's been 4 years now that we got Leah's diagnosis.  That means that it's been 4 years since my life felt normal.  I've been trying to think about what was going on during those last few days before our lives changed.  I was starting to put thing on a baby registry, researching brands of car seats, and bookmarking some of my favorite bedding items.  None of it had anything to do with Spina Bifida.  The night before, I was excited to see her on the ultrasound in the morning.  Since I was close to 20 weeks, it had been a while since I'd seen the baby.  I think the last ultrasound was at 9 weeks so I was looking forward to seeing how much more baby had grown.  Nothing, though, could have prepared us for what was to come.  

It was a rough few days following the diagnosis, by far the hardest of our lives.  For 5 days, we met with doctors, researched Spina Bifida, and figured out how our life would be different.  The most overwhelming part of the whole process was finding out about everything that could possibly  go wrong, be different, happen to her during her whole life.  All worst case scenarios.   It wasn't until we started talking to other families that we got a much clearer picture of what is more likely going to be our reality.  I suppose doctors and specialists have to tell us every single thing that we could encounter, but they make it seem so bleak.  In reality, our life is nothing but bleak.  It's joyful, happy, satisfying, and enjoyable.

Four years later, we are definitely in a better place that we were.  I wish I could have had a peek into this 4 years ago to make me realize that we would be okay.  I follow several blogs with other kids with a variety of special needs. One mom wrote this the other day, and I found it to be incredibly powerful and really resonated with me:

The thing about time is that sometimes the joy and bliss of the present can actually reach back in time and almost change the events of the past. Now when I recall that terrible day I think, “It was just her. Our sweet, spunky, amazing little girl. It was her all along.” And now I wouldn’t change a thing.

Wow!  Yes, yes all of that.  Thank you for putting into words exactly how I feel about that day, that feels so long ago but also like it was yesterday.

I know that she’s going to be fine.  This is her life, it will always be her life and she won’t know any different.  I am the one who has to come to terms with her life being different than how I imagined it.  That being said, if Spina Bifida comes with her, then I’ll take it because I want all of her.  It's taken me a long time to believe that.  There are still days when I wish SB away, but I banish those thoughts quickly because it would change Leah.  And I love her just the way she is.

My Big Kid

Everyday she's becoming more and more like a big girl, and less and less like a baby.  I can't believe my eyes sometimes, or my ears.  Am I raising a teenage boy?  I thought having a girl meant that I didn't have to hear the potty talk, but this girl thinks it's absolutely hilarious.  Potty talk aside, I so love being able to have a real conversation with her, and she can remember things that happened a few days or week ago.  She's also able to tell me some of the things she does during the day at school.  And starting to make up things... I'm pretty sure she didn't fall down the stairs or fly to California that day. 

Turning 3 has also brought on a bit of anxiety.  She's always been a worry-wart but it's become more exaggerated as of late.  A lack of mobility doesn't help either.  She has a hard time being in a room by herself, so we pay a lot of attention to her.  We've been trying to get her more comfortable spending time playing alone for a few minutes, walking out of the room briefly and encouraging her to be independent.  It has its ups and downs; she can do a few minutes at a time.  I'll be honest, Ty is better at it than I am.  I think I'm a little too nice and give in too much, and I need to let her fuss a bit more.  Easier said than done.

My big girl also moved up to a big girl room at school this week.  The nice thing is that her class went together, so all of her friends made the move with her.  They had visited the new room a few times to meet the teachers and get familiar with the room.  Our first week went pretty well, and she settled into the new room very well.  Moving upstairs has been a little bit more of a challenge logistically.  Her old room was on the first floor but now we have to get into the elevator to go upstairs.  It takes a little bit longer to drop off and pick up, and isn't as conducive to making multiple trips to the car with her equipment.  We are all getting used to a new routine.

Even though she's a big kid, she wants to know all about when she was a baby.  Her favorite thing is asking us to tell us a story about being a baby.  We tell her how tiny she was, and what a sweet baby she was.  She was so happy and laughed a lot and only cried a little bit.  She gets such a kick of out it, and it's fun telling her all about how she was a sweet little baby.  She's still as sweet!

Photo Update

We've been having a busy spring.  Here are a few of my favorite things we've done.

Visiting the 2 new babies in our family,

and she got to hold them both at the same time!

 

Coloring Easter eggs

 

She wanted to wear a headband.

 

Hide-and-go-seek

 

Lemons!

Back in the Game

The walking game, that is.  She's back!  And thank goodness because the lack of the walking has been really tough on her.  We put her on the DL about a month ago after she had the issue with her foot.  It was rough, mostly at school.  We had been taking the braces to school everyday, and her teachers commented that she was sad and a little withdrawn for those first couple days that she couldn't walk.  To have that mobility, and then have it taken away was hard.  She got used to being upright and feeling much more normal and like all the other kids.  

We were finally able to get the current set of braces fixed and we're now back in action.  I had taken her to the cranial-sacral therapist 2 weeks ago and asked her what she thought of Leah's feet.  Her response was that her feet have very high arches and the braces offered no arch support, so her feet were pronating outward, causing the 5th metatarsal to splay out.  They were also starting to club a little bit, which means that they were losing a little bit of their flexibility.  She did a lot of stretching and working Leah's feet and ankles, and recommended we find an insert or orthotic that will offer more arch support.  On Friday we had an appointment with an orthotics company, who put some side cushions and ankle straps to offer her feet more support.  Now she's able to be back in the braces, and she's a ton happier! 

I have to admit, that we cheated a little bit and let her do a little bit of walking for 30 minutes on occasion.  As with all of the things we do, it's about balance and we felt that it was just as important to her mental health to give her the independence as it was to her physical health to take care of her feet.  We'll ease back into the walking, which is partly why we got to this point.  Before February, the most she ever spent in a standing position was maybe an hour a day, at best.  To go from that to 4 hours almost overnight put a lot of pressure on her feet.  That and the fact that she's jumping and bouncing on her feet put extra stress on her body.  It will be nice for her to go up to 2 hours next week at school and then hopefully over the next couple weeks we can have her in it unlimited.  It makes her so much happier when she can walk, and it makes us happy to see her so happy!

Little Celebrity

We have had a brush with fame recently!  Last weekend Leah was the feature video at a gala for PACER, the organization that did her tractor.  It was a great event!  They had a huge silent auction at the Minneapolis Convention Center, and then a performance by Crosby, Stills, Nash.  All of our parents were there, and we both had a large group of friends and co-workers to celebrate with us.  It was a great evening.  

Here is a link to the video:  https://www.youtube.com/watch?v=dgPoa2OccsE 

Then earlier this week our neighbor brought over a copy of the local weekly newspaper, and Leah was on the front page!  She was on the cover with Minnesota Governor, Mark Dayton, who was at her daycare to celebrate the groundbreaking on a big expansion.  Our little superstar!  Apparently she asked to have her photo taken with him, and then proceeded to tell him all about how Grandma and Grandpa would be picking her up from school that afternoon.  Very important things to a 3-year old.  

Saying Good Bye

I am so sad to share that we lost our beloved friend, Jack, recently.  Jack had been with us for almost 13 years.  We got him not long after I moved to Minneapolis, just a couple months before we got married.  He wasn't a typical cat, preferring to hang around people and running towards a ringing doorbell.  No one was a stranger to Jack, he loved everyone.  Even repairmen who came to the house commented on what a friendly cat, almost annoyingly friendly when he wanted to be petted.  I dared anyone who said they didn't like cats to spend 5 minutes with this guy!

About 2 years ago, Jack became diabetic.  We kept him comfortable for a long time and he was his typical self.  In the last couple weeks, though, he'd been drinking a lot more water and seemed to get skinnier.  Finally one weekend he really went down hill, stumbling a little when he jumped off the couch.  Ty went home at lunch on a Wednesday to find him laying on the floor next to his water dish.  That's when we knew it was time.  I came home early and we drove him to the vet.  I knew he was ready to go when he laid on my lap in the car, barely moving.  At one point, he looked up at me and then over to Ty, as if to say his final good-bye.  Just 15 minutes later, we were bringing him home and burying him in the backyard.  It was a beautiful afternoon to sit and remember the cat that was friends with everyone.  

How do you tell a 3-year old about death?  We told Leah that Jack's body didn't work, he was old and very sick and couldn't get better, and that he wouldn't come back anymore.  That was the hardest part, trying to explain that he's not coming back.  She still asks about him, but she knows that he's now in Heaven and we keep him in our hearts and in our memories.  There's nothing sweeter than hearing her pray for Jack at dinner, and saying that he was a good friend.  She's right, he was a good friend.