Renny’s pressure sore seems to be healing now; the redness is getting lighter.  I have kept it covered with the “Derma-stuff” and we are only putting her brace on her when she is in her stander.  Her legs seem to be strong enough and flexible enough (her left leg is really stretching nicely now, but her right leg is still tight) for us to feel comfortable letting her “free” on the floor and even in her crib now.  Her diarrhea is also cleared up, so that is a relief.  She never seemed sick, but since it has passed we are thinking it was still just some kind of bug. 

Tomorrow she goes in for her 2-year-old checkup and a check with a developmental physical therapist, so hopefully both of those will only end with good news.  I will update again if needed.

Thank you to those who pray often for her; I know the Lord is listening and answering all of the time.  Please continue to pray for strengthening of her legs and flexibility in her knees. 

I’ll leave you with some overdue pictures: 

Our family

Renny's 2nd birthday cake

Occupying herself while waiting for the MRI

Sleeping beauty

Renny is two years old today!  I cannot believe it has been two years since this wonderful blessing has come into this world.  It has flown by.  I am just speechless as to how much joy she has brought us.  Sometimes I feel like we are being selfish, saying that, because it sounds like we are the only ones gaining from her being here, and that she is going to be the one “suffering” with her disability.   But, then I know better.  She is so happy.   Watching her play with her brothers today was so heartwarming.  She (and they) was laughing so hard; she was having so much fun copying them, moving around on the floor with them, playing little games (such as peekaboo), screaming for fun …I know that she feels that joy too. 

Happy birthday, Renny! 

You are our little miracle, our princess, our doll, our joy.

I hope everyone had a wonderful Easter!   He is risen!  He is risen indeed!

Renny has recently developed some beginnings of a pressure sore on her foot.  Because she does not have a lot of feeling in their legs and feet, she is unable to know when something is rubbing or pinching or whatnot, and so since she does not (cannot) adjust to relieve that problem,  her skin can then essentially lose oxygen and die.  It seems she has just the beginnings of a pressure sore on the top of her left foot – it looks like a small red patch of skin, almost like a bright birth mark.  After some research and some calling, we happen to have some stuff at home (I save everything that is sent home with us for her - It comes in handy!) that is like a “second skin layer” called Derma..something..and that should protect the sore, hopefully until it heals.  If sores are not protected and the skin breaks open, it can be very, very bad and very difficult to heal. 

We are also keeping her out of her brace for a few days to help with this healing.  I am assuming it is because of her brace that she is developing this pressure sore, because it is made up of a hard plastic material that is most likely rubbing against her wrong.  (The back of her heels are also very red, and so I am watching those too for any further developments).  Our PT suggested us taking her brace in to get it adjusted so it does not pinch/rub on all of these spots.  We also need to find some type of padding for further protection.  Hopefully we get this squared away soon so we can start standing her up again in her cast, so we can get her legs strong, so we can eventually work on walking!  It has been a long road….

Renny also has had a bout of diarrhea since last Wednesday, so almost a week now.   We didn’t think anything of it at first, but then started to worry a little bit after it didn’t go away after 3 days.  You know how it is, looking things up on the Internet…not always a good thing.  We had the fear that it had something to do with impaction – basically poop being stuck in her intestines – since she has a weak bowel system and has constipation issues every now and then.  But, after talking to a nurse advisor on Saturday, then Renny’s nurse on Monday, and then a fellow parent of a child with SB, we are thinking it is just a bug she has.  She does not act sick at all; she’s as happy as she usually is.    However, though it was appearing to get better (less “blowouts”), today she had a lot of it, so maybe we will call tomorrow, since our nurse said to call if it got worse. 

Some other news:   Yesterday, we traveled 2 hours to the hospital in which she had her back and shunt surgeries the day after birth, to have a checkup with her neurosurgeon.  She had an MRI (quick brain scan) to check the fluid in her brain.  While she was lying down for the MRI, they had to tie her arms down so she wouldn’t be grabbing at things.  Within a minute she had freed her arms and was grabbing away.  The medical staff came back, mentioning how impressed they were with that, and proceeded to do a triple-tie-down of her arms.  Within a minute or two, she had managed again to free herself and start grabbing away.  Bewildered and amazed, a nurse finally came and held her arms down while they did the scan.  Renny was not happy.  But, it was a good laugh in the meantime and she was further referred to as “Houdini.”    The result of the scan, though - everything looks good; her shunt is working well.  yah!

So, we are thankful for the good MRI, but watching the diarrhea and the pressure sores.  Pray that both will heal up quickly and without complications.  I will try to post some pictures again, perhaps of the pressure sore (Not the diarrhea).  Thanks!!!!

The brace is FINALLY here!  It came yesterday, and she has adjusted well to it.  She loves that it is much lighter than the cast, and is delighted to be able to sit up in it.  She really seems much happier, as if that were even possible, considering what a happy girl she is anyway.  I am disappointed to hear that she may need to be in it for 4 months.  This time is supposedly needed to allow her legs to strengthen up enough to be on their own.  I am really hoping that is an exaggerated amount of time.  Her muscles in her knees seem to be loosening up more now.  Her left knee is pretty good, but her right knee – though better – is still a bit tight.  Both knees need to be able to bend easily at at a 90 degree angle in order for any progress to begin. 

I have posted pictures below.  Again, please continue to pray for no fractures, for quickly loosened knees, and for her muscles to get strong fast!  The sooner she is out of the brace now, the sooner we can get working on her developmental skills, such as crawling, and of course,….walking.

I haven’t written in awhile because I assumed that Renny would have gotten her leg brace by now, which would allow her to finally get out of her cast, and then I would update everyone on how that was going.

Well, we still haven’t received her brace.  We were supposed to get it two weeks after her cast was sawed off (remember, it was sawed off, but they placed her back in it, with velcro holding it together), and it has now been three and a half weeks.  I am not happy.   My husband (I’ll call him “T”)  took her in today to get “pre-fitted” for the brace, and then he is told we are not scheduled to actually get the brace until March 31st (that would make it a total of 5 weeks, rather than the 2 weeks we were told).  Again, not happy.

But, then, I learn this:  The brace IS ready.  The appointment is waiting until the 31st because that’s the only day that can be coordinated between the surgeon and the orthotics person.  Did I mention I am not happy?  Now, this “appointment” will only take 5 minutes.  Fortunately, “T” questions the validity of having to wait that long for a 5 minute appointment, so the orthotics guy said he would look into it to see what he could do about setting something up sooner.  We will see what becomes of that…

We have been given “instructions” to take Renny out of her cast when we change her diaper to stretch her legs out, to get the range of motion in her legs.  So, though we have been doing that, I’m bothered by not being given more specific instructions.  I’d like to know exactly what kind of stretches and how long to hold them and all of that.  She has had no real therapy -I am sure that our “stretching” is not quite the same as real physical therapy -and I just worry about her legs recovering from everything.  Her knees are especially very, very stiff, from being in a straight position for 2 months.  We are told that the physical therapist from Birth to 3 will start coming after she is in her brace, but I just wish everything wouldn’t be taking so long.  I feel that every moment is important in helping Renny’s legs recover and improving their function.  The longer it takes to start everything, the harder it will be on her legs.

So, to sum it up, we’re waiting for her leg brace.  Hopefully, since it IS ready, it will be soon.  When she receives it, I will write again, and add pictures. 

Please pray for:  speedy delivery of the leg brace, speedy recovery of her leg muscles, especially the stiffness in her knees, speedy development of her skills (such as crawling, to start), and for safety for her body; in other words, no more fractures or other setbacks.  Thanks!

The title of my post is written the way it is because, though Renny’s cast was taken off on Tuesday, she’s not actually out of it.  Because her legs are SOOOOO stiff and her muscle tone is weak (it has always been weaker than most kids because of her lack of walking, but it is even weaker now from being in the cast for almost 6 months), we have to be careful with her.  So, they cut her cast in half and attached velcro to it, and we have to keep her in the cast still pretty much all of the time, except when we change her diaper, we take her out of it and stretch and massage her legs for a little bit.  She is so stiff right now that her knees bend only slightly. 

She was also “molded” for a body brace, which will arrive in two weeks, and by that time she will be able to go into that and be mobile, without the cast, while being protected at the same time.  I’m interested to see what the brace will look like. 

So, the cast was taken off, but not really.    But, she’s still happy, and we can at least work on loosening her muscles and preparing her legs even more for movement.  Here are a couple of pictures of her new “modified” cast:                                                                                                                                                              P.S.  I also added a Note at the end of “The Birth” page to the right. 

I again added another Page to the right, called The Choice.  It is not for those who are offended easily when discussing the pro-life vs. pro-choice issues.   

My mom and I were recently talking about Renny, and she said when I mentioned her having a disability (I think in regards to the blog), it was strange, because she doesn’t even think of Renny having a disability.  And, it’s true – I feel the same way.  I often forget that she has a disability.  To me, she just has some challenges, some limitations, but that’s it.  And, in case I forget to say this, I have never, ever, ever, seen these as a burden.  Renny has never been a burden.  And though we’ve had to go through things that most babies and families haven’t, I don’t even see it as “things we have to go through.”  It’s just there; we just do what we have to.  It reminds me of 1 Corinthians 10:13, where God says he will never give us more than we can handle.  I think that is the case for anyone, anywhere, regarding anything difficult.  We just do it.

We are down to 3 days until the big, stinkin’ cast comes off!  We are so excited!!  Please pray that all will go well, and, especially, that her legs will be nice and strong, that there will be no more fractures, that her legs will recover quickly from being casted so long, and that she can begin learning how to use them soon! 

Here are a few recent pictures of her, including a few of her showing the full hip spica cast, one in her stander, and one of her after she has enjoyed eating some baked beans! 

I thought I would just write up a quick note, since it has been awhile since my first post.  I added another short “Page” to the right called “Reborn.”  It just summarizes how Renny “turned out” contrary to what was predicted.

As for an update, Renny is still in her hip spica cast.  Though I know she’d rather not be in the cast (the last time it was removed, she was the happiest girl ever – laughing continuously, making sounds/babbling that we hadn’t heard from her, kicking her one leg that she can move up and down…it was so neat to see….for the 2 days she had it off!), she does like this latest cast because she can stand up in it.  She is in her stander a lot, and we hold her up by the couch a lot too.  She also likes it when we “walk” with her.  All of this standing, along with her now “calloused” legs resulting from her healing fractures, will hopefully strengthen her legs enough to prepare her more for being cast-free.   A custom body brace will supposedly be made for her also, to provide some extra protection.

The scheduled date for removal is February 24th.  Less than 3 weeks to go!

My husband recently asked me if I wanted to start a blog about our daughter “Renny,” who has spina bifida.  I am not much of writer nor one who likes to sit at the computer doing this type of stuff, but I also had been wanting to get down my memories and thoughts about our experiences with our daughter before I began to forget them.  I also know that some of our friends and family like to be updated about Renny, so this was a way they could check up on things whenever they wanted.  Hopefully I will do well at keeping them updated! 

So far, I have created some pages to the right that tell the history of our daughter, beginning with our 20-week ultrasound, when we first learned about her disability, followed by her birth, a short note about God’s will in regards to all of this, and a summary of the implications of spina bifida in her first year and a half of her life.  A lot has happened in these two years since we first learned about Renny – too much to write down everything – but I have tried to sum it up as best as I could. 

I hope you enjoy reading about our journey with Renny.