Archive for January 2016

 
 

1/19/16 No Limits, Please

This is just a short one, but it has been on my mind for quite some time, so I am sharing it here.

I am not going to go into detail, but there have been times where we have been told certain things about what Ren will and will not be able to do…or be.  If there is one thing that makes me upset, it is when people put limits on our child.  I think the problem is that people think that we do not have a realistic view of Ren and her abilities.  The thing is:  we do.  We are VERY aware of her weaknesses, we realize how delayed she is in areas, and we don’t need people reminding us of this. HOWEVER, we also know that if we limit our expectations, our hope, of what she can do in the future, then we are limiting HER potential.   Why put limits on what has no limits?  Who are we to limit her?  Who are we to limit GOD?  I remember hearing about a study where parents who had a child with spina bifida, no matter their “level” of the disability, were told either positive or negative futures about their child.  Those who were told negatives, many of those children did not thrive.  Those who were told positives, they thrived.  If people BELIEVE that the child can thrive, can progress, can achieve, can succeed, then there is more of a chance this will happen.  Though WE believe this, no matter what anyone tells us, we also expect OTHERS to believe this about our child too, if they are to be involved in her life.  Otherwise, she WILL be limited.

Here are some No Limits memories:

No limits

No limits

No limits

No limits

No limits

No limits

No limits

1/19/16 Inpatient Therapy

Ren has returned from her inpatient therapy program, a few days early.  She stayed for one week in the pediatric wing of the hospital, with the goals of getting her physically back to where she was from before her leg surgery in a shorter amount of time compared to doing outpatient therapy once/twice a week for weeks or months.  Each weekday was filled with a few hours of physical and occupational therapy, and the rest of the time filled with either school work with a tutor, speech therapy, music therapy, with a Child Life Specialist, or playing with a volunteer.  She was kept busy from 8:00 until about 4:00 each day, sometimes later.  I was only there over the weekend, from Friday evening until Sunday evening, and her schedule was extremely light on those days, with PT and OT just an hour each on Saturday, and only 1 hour of PT on Sunday.  T was with her two nights, and Grandma three nights, so she had someone with her every night.

Though our feelings about the experience are mixed, here are some things that came out of it:

  1.  It has been determined that Ren needs to go back to wearing KAFOs (the longer leg braces) on both legs, as she just does not have the leg strength to wear only the AFOs.   They fitted her for these braces, which will be ready in a couple of weeks.
  2.  The PTs were instructed to try out “loft strand” arm crutches, to see if she could learn to use these this week, and again, she is just too weak to be able to use these yet.  Perhaps a long-term goal.  Nothing new there; it’s been a long-term goal for, a long time.
  3.  Ren has been using these power-assist wheels with her wheelchair, and we recently got new manual wheels for her to be able to use as well.  We have decided to switch to using these for the winter, as it seems her arm strength has decreased a bit from not having to push the wheels.
  4.  They are going to recommend to the school to set up a walking program for Ren, where she walks for a certain amount of time each day with someone, to help increase her leg strength.
  5.  We were given some stretches and exercises to do with Ren at home, to continue to get her strength and flexibility back.

So, we are so glad to have Ren home; she is so happy to be back to school.  (She CHEERED when she realized she could go back today).  We are hoping for things to slow down a little again for her, as she has had quite a bit going on since October.  A few more appointments to check in on her orthotics and on her recent bladder surgery…..and then hopefully she can take a break for awhile!  We had a good run – almost two years – before all of this, so we are grateful for that, and hope to have another run like that again soon.

 

 

 

 

 

 

 

1/4/16 Post Botox Procedure

Ren had her Botox procedure done today.  It was a fairly short procedure, in and out of the operating room in a little more than an hour.  As usual, she was a hoot beforehand, giggling and being silly in the pre-op room, making everyone laugh.  Even being rolled into the operating room, the Childlife Specialist said she was happy-go-lucky.  Once in the operating room, she got a little nervous when everyone starting bustling about, but cooperated and put the mask on and was out.  AFTER the procedure, in the recovery room, though, is always a different story. There are only two situations when Ren is cranky and upset.  One, is when her brothers tease and annoy her.  Two, is coming out of anesthesia.  She cries and cries and nothing can comfort her.  Scratch that – the one thing that makes her a little less cranky is getting the IV out, which of course they will not do until they know for sure she is fine.  She needs to be able to keep down liquids, do some coughing, etc., which in this case was a relatively quick 20ish minutes.  She does seem to take about a half hour or so to start acting more like herself, with or without the IV.  It’s just that the IV causes even further stress and anxiety.

The doctor said it all went well, but that the Botox usually takes about 2 weeks to do its job.  In a month, she will go in again for another urodynamics study to see if her bladder pressure is better, to determine if it has worked or not.  Please pray it works!  🙂

I am in a couple of Facebook support groups for spina bifida, which I am sooooo glad I am, because I learn SO MUCH, get so much information, by reading the conversations that go on in there.  Anyway, in a recent conversation, some adults with SB were talking about how they do not like it when parents share personal information, such as regarding bathroom issues, about their children in blogs or whatnot, because when it’s out there on the Internet for anyone to see and know about….it becomes too personal, especially when they are older kids/teenagers.  Which made me think about all that I share about Ren, and wonder if it is too much.  So, I am going to probably rethink things in the future as to what, or at least how, I share information about her.  I started this blog for two reasons:  to update family and friends whom wanted to keep up with what was going on with Ren, and to have something out there for others whom want to learn more about spina bifida – maybe parents whose baby was just diagnosed in the womb, for example – so they could find some accurate information out there.  So they know that though it may not always be easy, it is always worth it.  And hopefully seeing pictures of happy Ren is will provide all the information they need.  So, I want to keep sharing information….I just might make sure it is still shared in a way that would not harm Ren’s integrity.

Before procedure - Happy!

Before procedure – Happy!

After procedure - Not happy!

After procedure – Not happy!

Half hour-ish after recovery - Happy again!

Half hour-ish after recovery – Happy again!