Archive for the Category Spina Bifida


10/1/17 – A Real Princess! And, New Braces & Shoes

So, Ren is part of our town’s royalty. She is 1st Runner Up for Little Miss of our town!  Before you get too impressed, please know that this is not a competition for the little ones. It is literally a name drawn out of a hat.  There were four little girls at the ceremony, and three were randomly drawn to represent our town’s Little Miss royalty.  Their job?  To ride on a float in parades with the older girls royalty.

Late this summer, while at a local parade, Ren made the comment to me that she’d like to be in a parade someday.  So, as the royalty float for our community rode by, I said, would you like to do that?  And, she said, “Yes!”  So,  I filled out the “application” for the Little Miss of our small town (which was just a set of basic questions:  What is your favorite subject, Do you have any pets, etc) and handed it into the city hall.  On a Saturday morning in September, her name was drawn for the 1st Runner Up.  She got her sparkly crown and her long sash, and rode on the float later that evening, waving to everyone, and LOVING it.    I have to admit, I was a little nervous how she would do, if she would like sitting on a float waving to strangers, and hanging out with unfamiliar girls of all ages at the Queen’s Tea, which I learned is a traditional gathering of royalty before the parades.  But, she has been in three parades and LOVES it and can’t wait for the next one.

The other news we have, which may seem like something little to those who have normal feet, is that she got new shoes!  These are not any regular shoe, but a specially designed shoe by NIKE, called Fly Ease, which has this cool zipper going around the shoe and Velcroing (is that a word?) closed.  We have tried out other orthotic shoes, and some work okay, but none have really looked “normal.”  These shoes make it so easy to put her shoes on and off, AND they look cool.  LOVE them.  She also got new braces at the end of summer.  It took awhile for her to be able to wear them regularly, as they had caused some sores on her leg and so we had to get them adjusted, and she had to stay off them for awhile to allow time for the sores to heal, but they seem to be good now, and they are nice and colorful.


In a week and a half, Ren will be going in for leg surgery.  I will update you on this as this happens.  But, prayers for a successful and safe surgery would be great!



8/20/17 Summer Fun

Another fun-filled summer is coming to an end.  Ren stayed pretty busy, which means I stayed pretty busy!  She again had horse back riding, swimming, dancing, and summer school.  But, new this summer was trying out water skiing!  Twice this summer, in June and August, she was able to attend an adaptive water ski event, where two water skiing teams and an organization called NASA (North American Squirrel Association) partnered in providing this opportunity for individuals with physical and other disabilities.  The first time in June, the weather was awful ~ cold, rainy, and a storm coming in resulted in a shortened time with only one ski run in.  But, she loved it so much she wanted to go again in August.  So, a few days ago, she attended again ~ once again in colder rainy conditions, but no storms so she got in three runs this time before she decided she was too tired and cold to go anymore.  What a great thing though for organizations to provide (at no cost) and for people to volunteer in order to give these kids this chance to try something they normally would not be able to do.  I’m so thankful for them.

 In July, she again attended a week long dance camp.  Last year was ballet, this year was a musical theater.  She had fun, but when the recital came, she had stage fright!  Whenever she looked at us, she froze!   She had three dances.  Two of them she was in her wheelchair, and one she used her walker.  Thanks again to the dance studio for making accommodations for her!

We have a trampoline that she bounces around on, and the horse riding that she has been doing helps her balance and core strength, which is needed to eventually walk with arm crutches.  One day this summer, we traveled to meet a man who is paralyzed from the chest down and in a wheelchair, yet still owns and runs his own horse ranch and rides independently.  The day we came to see him, he and his wife were in the midst of packing for a several week trip out west to ride on trails.  He took time to show us how he is able to do everything, with some modifications and accommodations here and there.  It was good for Ren to see how someone who is like her is able to do things.  We are hoping to see him again, perhaps at a horse show in September.


The swimming she did over the summer also benefits her entire body.  She has had two 1:1 lessons at the YMCA, and for the first time in a long time, she has an instructor who is actually teaching her how to swim.  She has ALWAYS loved the water, but she has always been hesitant at going under water, and not many instructors have actually worked on helping her to learn how to swim in a way that does not require the use of her legs.  It’s possible to do so, we’ve seen it – but finally she now has someone helping her do this again.  She has made huge progress just in this short amount of time. I’m so excited for her!  Besides the lessons, Ren was at a couple of pools this summer and showed me once again how independent she can be and wants to be…so much that she scares me a little bit!

Along with all of these activities were some trips to some zoos and playgrounds and time with relatives.  OH, yes, and a big trip out east with our family!




So, only a couple of weeks before summer is gone and she goes back to school….and in fourth grade.  Why do our children have to grow up so fast?!   We are looking forward to a great school year, and hoping to see great progress in all her skills.  Please pray for her to grow cognitively so she can keep up with school, socially so she can grow in friendships, and physically so she can be strong enough to learn to walk with arm crutches.

John 9:2-3:   As he went along, he saw a man blind from birth.  His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”




4/22/17 TEN!

Ten.  Our daughter Ren turned 10  years old this week.  TEN!  Ten years ago, we brought into this world a beautiful little girl with spina bifida.  We had no idea what our reality would be.  I still remember the night of her birth.  As I was lying down preparing for the C-section, I put all trust into God’s hands.  I was nervous, but at peace.  I remember saying, “Thy will be done, Lord.”  Well, His will is pretty awesome.   It has been ten years of some challenges, some extra work, some scares, some hospital stays, some disappointments, some sadness, but mostly….JOY.  She brings so much JOY into our lives.

Ren enjoyed three celebrations of her birthday.  One at her grandparents with cousins, aunts, and uncles; one at our house with just our family; and one with her friends from school.  She was happy with every single one of her gifts, as usual.  She had just a pink birthday cake, because she could not think of any theme to have.  Apparently she is too old for that.  I asked about a Frozen theme, and she cocks her head to the side, chin down, gives me a look and says, “Mo00mmmmmmm!” as in – are you kidding me?  TEN!

She received a little extra surprise gift for her birthday too.  We had gotten this toy ATV about a year ago.  Since it is difficult for her to roll around in her wheelchair outside in our yard, we thought this would provide a way for her to be able to ride around the land in a faster, more efficient way.  However, it was foot-powered.  She had to press on a pedal with her foot to make it run.  She is unable to do that.  She needed it to be hand-powered.  T attempted to start the task, but….it didn’t happen.  So, I contacted an organization that does these things, and through them made some connections with the engineering department at a state university, but they were 3 hours away and it just never worked out to meet up with them.  Since it’s now (finally) spring, I started thinking about it again, and on a whim the other night, I put an ad in a Facebook “for sale” area group, asking for help in modifying her ATV.  I received 3-4 responses within a half hour.  One of them said, “My husband can do it.  He will do it for free.”  Wow!  I bring the ATV to him Friday evening, they tell us late that night it’s ready and we can get it the next day.  Wow!  We went last night to pick it up, and it works perfectly, and Ren LOVES it!  She was SO happy and giddy trying that thing out.  In watching her, the man said, “Oh, that just made my day!”  He did it out of pure generosity and kindness.  Just a nice guy wanting to help someone out.  We gave him some pure maple syrup as a token of appreciation, and in their conversation, T also offered to set up his business website for him.  On the way home, Ren says, “Can I practice riding that ATV every day??”

Since it has been 8 months since my last update (!), here’s a quick recap:   In September she started school. She is in 3rd grade and still loves school.  For Halloween, we made her Vanna from Wheel of Fortune and she won first place in her age group costume contest.   In December, she stood up with her walker and sang with her class during the Christmas program (sadly, no good picture of it). In January (well, all Dec-Feb), she was at a lot of her brothers’ wrestling meets, making friends with strangers.  In February she played in a piano recital, which she was so excited for and did a nice job.  I played a duet with her…..we messed up….and laughed about it.  And in April, she turned 10!

This girl is our little miracle.  Our bundle of joy – literally.  Happy 10th birthday, Ren!

Ren Costume ren recital 18136306_10155305237473092_1659345157_n 18056970_10155302677808092_6298235791045148269_n17990783_10155282482508092_3260348280495325944_n





8/7/16 Festival Fun

This last week, my husband organized a festival, called Athanatos Arts and Apologetics Festival.  It is a Christian festival, focusing on the arts (music, film, literature, art, etc) and on apologetics (defending the faith).   There was a speaker from Thailand and an author from Egypt.  There were presentations on education, human trafficking, zombie apocalypses,  confederate soldiers, arguments for God, and much much more.  There were authors from around the country who talked about their books and writing experiences.  There was music ranging from Celtic, to classical guitar, to pop/soul, to Christian rock.  There were screenings of movies, including one which gave its first public showing by its producer there.  There were workshops on writing and music, an improv comedy show, and a DJ.  There was a vendor tent and of course a food tent.  And more.  There was exceptional fellowship and fun while building faiths and relationships.  It was its first festival, and one of the best ones I have been to.

Now, why do I talk about this festival on Ren’s blog?  Because the birth of Ren is one of the factors that led Tony to formally creating his ministry organization…which led to his prolife involvement….which led to his publishing company…which led to his writing contests…which led to him wanting a place where his authors could have a platform…which led to this festival.

And, Ren had a great time there too.  She and another girl became friends, playing together and giggling their heads off.  (See pics below) I checked on her occasionally but she was left (happily) on her own for much of the time, and I was okay with that knowing she was in a safe environment and knew she had others checking her too. She ate a lot, rolled around in her wheelchair, walked around in her walker, listened to the music with us, and laughed…a lot.

If you are in the Wisconsin/Minnesota area next August, I strongly encourage you to look into attending this festival.  I am not being biased, either.  Well, maybe a little.  But, everyone whom I talked to who had attended had a great time and insisted it repeat next year.  Here is the website to his ministry organization:  and the festival, though it will change for next year, of course: There is a Facebook page as well that has photos and videos of the event:

Thank you to those who came to show your support for either Tony, our family, or the ministry in general.  Your presence was appreciated beyond what you will know.   Even those who could not come but at least gave simple words of encouragement.  That too we are thankful for and appreciate.  Really and truly.

“He has set eternity in the hearts of men.”  Ecclesiastes 3:11



Ren’s new friend helping her put on her braces


7/28/16 Summer Fun

The summer has been flying by, and this partly due to Ren being in so many different activities.  She has worn me out!  She started out the summer with Summer School, which was in the mornings for 5 weeks.  On one of those days, the elementary school took a field trip to a trampoline park. I came with as a staff member, and so I was able to see this girl-who-cannot-walk crawl around and “jump” on the trampolines, and dive into the foam blocks all on her own.  Well, scratch that, she COULD do it on her own, but bless all her friends and schoolmates for taking care of her when they thought she needed it.  I watched her for awhile, but wandered away most of the time after I realized she was just fine on her own. She had a blast.

For the last two weeks of summer school, she was able to participate in swimming lessons through the school.  They provided her with a 1:1 instructor, and she loved it of course.  We just literally three days ago put up our own pool in the backyard (I know, a bit late…but better late than never, right?), and she has enjoyed that the couple of times in there so far.  Hopefully there will still be plenty of weeks left to enjoy it before fall weather approaches.

A few years ago, Ren was in horse therapy.  I had read that it is really good for the rider’s core and balance.  So, I looked into it a bit around here, but in the end, we found the next best thing.  Some friends of ours have horses, and so about once a week, she goes riding for about an hour.  Not formally horse therapy, but I know that just riding on the horse is good for her core and balance.  They have her do some activities, like throwing a ball into a bucket throughout the session, so that gives her body a good workout and somewhat therapy related.  We are still doing that; in fact, we just went again today.  I’m thankful that we are able to do this, and so close by!  She always enjoys going horse riding!

Every two weeks, Ren has also been going to physical therapy.  The therapist is introducing her to walking with forearm crutches.  It is and will be a slow process, but if we can strengthen up her core and balance, and other muscles, then maybe it can start working for her.  I really would like her to be able to walk with these crutches for even just short distances, really just so she can at least walk around the house.  If she could do that someday, that would be fantastic.  Now, if only we could remember to do the exercises that the PT tells us to do…..

Ren has always, always, always wanted to be in dance.  In the past she often talked about going to her “dancer place,” and though it was an imaginary place, it was a real dream for her.  So, I decided to check into this too.  I corresponded with an area dance studio, inquiring as to whether or not they would be willing to accommodate for her in one of their week long dance camps.  They were happy to oblige, and so we signed up for the ballet camp.  I figured this would be easiest for her to be a part of, and it worked well within our schedule.  She had her wheelchair, and she wore her KAFO (tall) braces, so that she could stand at a ballet bar for part of the time.  I drove her the 40 minutes to get there and watched through the window as she worked so hard to move her leg around in the different positions, and I saw her do her own modifications of the movements that she was unable to do.  I watched her make things work for her, even if she did not keep up totally with the others.  I watched the other children look at her curiously for first day or two, and then quickly see her as just another girl who was a part of the group and did things differently.  The dance instructor incorporated her well into the three dances they practiced; with her at the bar for one dance, and then in her wheelchair for the other two, and there was a high school dancer nearby to help when needed.  I watched Ren soak in this wonderful opportunity, enjoying every second.  She LOVED it.  I am so thankful for the people who recommended this place, and for the staff who worked with her.  I am sure we will be looking into it again next summer.  Because for one week, she got to be a real dancer, in a real dancer place.

I guess that is it!  Below are some pictures and a video (please ignore my frantic request at the end for a student to go check on her; it was the first time she had gone, and she freaked me out.  She came out laughing, of course) of her having summer fun.  Until next time!


5/10/16 Spina Bifida Clinic

Today, Ren had Spina Bifida Clinic.  This means we left our home at 6:30 to be at the clinic by 7:20 for a day of appointments with many of her doctors.  It is great because we meet with all her specialists in one place, in one day.  It is hard because we we meet with all her specialists in one place, in one day.

The morning started out with an ultrasound on her kidneys and bladder.  It’s important to check the health of these organs regularly; if there is any reflux (the backward flow of urine from bladder to kidney), then we need to address this to prevent more complications.  When we met with the urologist later that morning, he relayed that everything looks good, so yay!

Ren then met with the speech pathologist to have a speech evaluation this morning, as she is going to receive speech therapy there during the summer months.  Nothing new here; all her weak areas we already knew about.  She then had an OT evaluation.  The therapist saw nice improvement in some areas since the last evaluation.  Yay!

We also met with the physical medicine/rehabilitation doctor, the orthotist, and the physical therapist.  Ren had her white straps on her KAFO braces changed to black (per my request!), and the inside bracket on her left brace taken off, to lessen the chance of her braces knocking into each other while she walks.  They had her do some walking and they decided she is looking pretty good, and it seems like they feel that moving onto working on using forearm crutches is the next step.  Ren will also receive some PT this summer, and that skill will be worked on during those sessions.  Yay, again!

The neurologist came in for a visit, mainly to make sure things are going okay.  And, guess what?  Ren has been off of seizure medication for 5 months now, seizure free.  So, yes, things are going GREAT!

A social worker met briefly with us as well, and she gave us information about a couple other resources that I had either forgotten about, or had not heard about.  Then, we met with the OT again and a rep from a medical equipment supplier, whom looked at her wheelchair and set up an order for a new, bigger seat cushion for her, as well as replacing a few parts that were chewed up by our annoying cute puppies.  And, finally, we met with the new pediatric neurosurgeon to “establish care.”  He reminded us of the symptoms of shunt malfunction or infection to watch for, and he is having us set up an appointment for her to come in for a CAT scan and x-ray of her brain and spine, so he can have a baseline to compare to if there are issues in the future.

Finally, approximately 8 hours after we had arrived, we were finished for the day.  But, it was a good day, with lots of good information, and good prognoses.  And, Ren, of course, was happy throughout the entire thing (first pic).  The hymn “Praise God from Whom all Blessings Flow” comes to my mind, and Psalm 136:1 “Give thanks to the Lord, for He is good.”  God is good, all the time.  All the time, God is good.  On good days, like today, but even not-so-good days.

Here are a few pics to end with:  See descriptions below pics for more info on each 🙂

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2nd pic:  Ren working hard being independent on the playground.  I have seen nice improvement in her ability to lift her legs up steps!

3rd pic:  Ren practicing walking at school with an aide.  This is most likely the reason for her growing leg strength, as she does this everyday for 10-15 minutes.

4th pic:  Ren with her cousin on a stroll.  Sweet memories!

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!


12/30/15 Botox, Therapy, and Seizure Free

Botox – What does THAT mean?  Well, some new issues regarding the bladder have come up recently for Ren.  A couple of weeks ago, she had a urodynamics study, which is a test that measures the amount of pressure in her bladder.  It is usually done once a year and has always been at a decent level, but not this time.  This time it showed she is leaning on having too much pressure in there.  Too much pressure can eventually lead to urine going up into the kidneys, which is not good.   To help remedy this pressure problem, we are doing two new things:

1) We have started to have to leave a catheter in her overnight.  After a few nights of trial and error, we are doing it the simple way by putting a catheter in with a bag attached and then tape the tube to her belly.  It seems to be working ok so far.  A new inconvenience, but an inconvenience is better than a new big health problem, and it too will become just another routine.

2) The urologist wants her to have Botox injected into her bladder.  Yes, Botox.  It relaxes the bladder, allowing it to hold more urine safely. She had been on medicine to alleviate this problem in the past, but it appears it is no longer enough.  She is scheduled to go in for this on Monday.  She will be put under general anesthesia, but it will be an inpatient procedure with no incisions.  It sounds like it works very well for many adults with this issue, and recently has been used on children with mixed results:   either it works wonderfully, or does not work.  However, it does not sound like there are any adverse effects from it; it just does or does not work.  If it does work, she would just need to have the procedure done every 6-8 months.  If it does not work, then she would need to have surgery – a bladder augmentation, which is NOT a simple surgery by any means.  Here’s to hoping it works for Ren!

Therapy – The topic of Therapy involves our decision to have Ren take part in a 2-week inpatient therapy program to help her bounce back from her leg surgery faster.  She will be staying overnight in the hospital for about 12 days.  Each day she will get 3 hours of therapy, including physical therapy and occupational therapy, and possibly some speech therapy as well.  They will provide a school tutor to work on academics while there.  The staff compares it to camp, as the kids are kept busy all day long, with therapy, school, socializing, and playing.  One of us will try to go there each evening to spend time with her and stay over too if possible, though I will most likely only be able to do that on the weekend.  Grandma will be staying with her a few nights as well (thanks, Grandma!).  Though a little nervous about the length of the stay, we think it will be a very good thing for her.  This will occur in a couple of weeks.

All of this was  discussed at her appointment with physical medicine yesterday.  Afterwards, we went to the orthotist, whom molded her for a new AFO for her right foot.  They are going to attempt having her just wear AFOs (shorter braces) on both legs, now that her right leg is straightened out.  The hope with therapy is that it will strengthen her leg up enough to make it possible to for her to be able to need just this AFO on her right leg.  It has always been quite a bit weaker than her left leg, but wearing an AFO is much lighter, and our greatest hope is for her to be able to walk with arm crutches some day, and all of these things are steps in that direction.  If it seems that her left leg just isn’t going to be able to gain enough strength for just the AFO, then they will just have her go back to the KAFO (longer brace) to provide the support she needs.  I don’t think this takes away the possibility to walk with crutches.

Seizure Free – Here is the most awesome news of all.  Ren has been off of her seizure medications for about a month now….with NO seizures.  I sometimes take it for granted how wonderful this reality is, as it has been 3 years now since her last seizure.  But, then I think back to those awful memories of when she had those first four grand mal seizures, each lasting 30-90 minutes each….it really is quite an awesome thing where she is right now.

Thanks to those who show her (and us) so much support, and to those who pray for her.  We appreciate it!

Please pray:

  • That her Botox procedure goes smoothly AND that it is SUCCESSFUL!
  • For her to continue to be seizure free
  • For her physical therapy to strengthen her up well and that she will soon show ability to start working with walking with crutches
  • For her speech will just have a big breakthrough, so she can show everyone how much I know is up in her working mind
  • For continued good health