Archive for April 2014


04/20/14 – SEVEN

Ren turned seven a few days ago.  I cannot believe she is SEVEN.  Seven years ago, I was in the delivery room, telling God I was giving everything into His hands.   Seven years ago, we chose the name for her that means “Reborn,” because she was born healthier and stronger than we were led to believe.  Seven years ago, our lives were changed…for the better.  Because seven years ago, we were given the gift of a beautiful, delightful, funny, determined, wonderful little girl, who has taught us that having a disability does NOT mean her life is less important, or less worthy, or less valuable, or less able.  She is the bravest person I know.  With every obstacle or challenge she has, she pushes through it, smiling.  And she brightens our day everyday.

There have not been too many changes for her since being in Ohio.  But, that is a good thing.  She is wearing her KAFOs, so leg braces that go up to her thighs.  This has been supporting her knees, as well as enabling her to walk with her walker much better, even walking around in the grass, which she was not able to do before.  They recently lengthened one of her braces – I guess her left leg grew, which if true is good, because that leg had been shorter than the other.  She has had an MRI, to provide a baseline of her spine, and all looks good there.  She has had her eyes checked (done yearly due to her eye surgery early in life), and that appears to be ok for now, though a comment about needing glasses in the future was made.  We are awaiting an appointment with orthopedics, as they have yet to look at her past x-rays; I believe she has an appointment in May.  I have been worried about her fractured growth plate in her knee, her hips – which may be coming out of their sockets again, according to an x-ray before we moved – and the metal plate that is still in her femur.  So, hopefully at this next appointment, we will get the opinions of these doctors on what steps need to be taken with those issues.

Ren has physical therapy at school, but she also goes once a week to a PT clinic.  There she has won the hearts of the two therapists that work with her, one of which also works with her at school.  They are so inspired by her hard work and perseverence, and get a kick out of her sense of humor.  They are working with her on how to use arm crutches.  It is slow progress, but it is coming along.  My ultimate (realistic) hope is that she will be able to walk using these forearm crutches in the future.  If that happened, I would be thrilled.  In the meantime, she uses her walker, or in some cases, a stool.  Yes, a stool.  When she is at her friend KT’s house, she and this 4-year-old friend of hers will find a small stool for her to hang onto as she pushes it and walks around the house.  And, they think nothing of it.  It’s just a way for her to get around, that’s all.

Ren’s speech has progressed IMMENSELY this year.  She is talking all over the place.  It is still somewhat choppy, but her vocabulary is huge, and it is just so great to hear what comes out of her mouth.  Sometimes the things she says makes us laugh, even though from a “normal” 7-year-old it would not be impressive or humorous, but because we know what she has come from, we appreciate it so much more.  Today she was talking and could tell I was not really paying attention, and she said, “Mom!  Are you listening to me?!”  And the other day she said, “I like to move it, move it!  I like to move it, move it!”  Again, nothing big in most people’s eyes, but big to us.  Oh!  That reminds me – she is also SINGING, with WORDS!  In one of my previous posts, she was doing some singing, but mostly “La la la….”   Now, she sings with words, and it is so sweet.  And funny, because she usually just makes up her own words.

Her second year in kindergarten is proving to be successful, as she is performing at or above grade level in all subject areas.  They send home a portfolio every 4 1/2 weeks, to show test results.  On her last reading unit test, she scored a 100%.  That is HUGE.  She has a wonderful support team at school, a wonderful classroom teacher who emails me every night about how her day was (they are working on encouraging her to speak in front of the class), and an aide whom Ren adores.

There have been NO seizures, going on about 21 months now seizure-free.  Which. Is. Awesome.

And, before I close, having a child with SB makes for some interesting stories sometimes, and exposes the kids to things that, though they consider the norm, others would seem strange or gross.  The MACE and mitrofanoff procedures she had a year ago have been extremely helpful, especially when traveling.  Just a reminder, that now we are able to cathetorize Ren through her belly button, so when we travel, I don’t have to find a place to lay her down, I can just do it with her sitting in her car seat.  So, during one of our gas station stops on the way to Wisconsin to see family a few days ago, I was standing outside the van next to Ren, getting ready to cath her.  I have to back up a bit, to explain that normally we have a portable urinal container to have her “pee into,” that allows us to measure how much she pees (yes, we measure her pee), and while on the trip, I realized this container got left at home.  Having to be resourceful, I found an empty water bottle in the van and used that, which was actually better, because the cap screwed on nicely, unlike the urinal container, whose cap sometimes came off and pee spilled all over the van.  Why not empty it right away, so it does not spill, some may ask?  Because sometimes at gas stations, there just is not a right way or place to empty a container of pee.  So, sometimes it gets set in the van until we can find a more appropriate, discreet place to empty it.  Anyways, so after the first time of cathing her on the trip, I used the water bottle, closed it up, and set it on the floor next to her seat. And so on one of our next stops, when it was time to cath her again, I was getting everything ready for her, when suddenly I hear in the back seat, one of our 10 year old twins shout out, “Hey, Mom, Ren’s pee!” and I look up to see him handing me a bottle of pee.  For whatever reason, I just started to laugh…a lot.  I almost couldn’t stop.  The humor of the situation just hit me, and all I could do was laugh.   The fact that our kids just saw this type of situation as “normal,” and did not blink at all to find a bottle of pee by their back seat, was….funny.  Sometimes you just have to be able to see the humor in things.

And, Ren is definitely able to do that.  Everything is great to her.  When I say, “Ren, it’s time to sit on the toilet (for 45 minutes),” she will shout, “Hooray!” and when I say, “Ren, we have to go to physical therapy (and work really hard and long),” she will shout, “Hooray!”

She just loves life.

Happy birthday, Ren.  You are my hero.

IMG_0347IMG_0352Ren on walker