Archive for the Category Spina Bifida

 
 

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:  http://athanatosministries.org/  and the festival, though it will change for next year, of course:  http://christianartsfestival.us/ There is a Facebook page as well that has photos and videos of the event:  https://www.facebook.com/ACMArtsFestival/?fref=ts

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

 

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Ren’s new friend helping her put on her braces

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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!

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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
Christmas!

Christmas!

 

 

11/11/15 New Cast

Ren went to the doctor yesterday to have her splint removed and a new cast put on.  While there, she needed an x-ray of her leg.  It was during this time that T texted me to tell me he was pretty sure she had a fracture.  Um…..what?!  My heart stopped and I instantly felt sick to my stomach as memories of her almost two-year-fracture cycle came rushing to my mind.  You see, when Ren was about 18 months old, she had hip surgery.  She was in a spica cast for 6 weeks, and the day she had this removed, she fractured her leg.  Long story short, every time she had a surgery, she would fracture her leg within a day BECAUSE her already-weaker-than-a-normal-kid-and-the-size-of-your-pinkie-bones became even weaker while sitting in a cast for so long.  This surgery-fracture cycle lasted almost two years before she was totally healed up.  Though I was not originally afraid of this same thing happening during this particular surgery – because (as the surgeon also explained) she is much older, and has much stronger and denser bones since she has been weight bearing for a much longer time nowadays.  So, when T told me this, I was confused, yet so, so upset.  I wanted to cry, imagining her going through that cycle again.  However – it had a good ending this time.  After the surgeon came in, he explained to T that it was not a fracture, per se, as, though the x-ray (see pic) definitely looked like a fracture, it was instead the place where he had CUT her bone, to allow her leg to rotate.  Though I had to fret on the fracture news for an hour at school, I was not too upset with the husband on his error because I was so relieved at the good news.

So, Ren is in a short cute leg cast for four more weeks.  The picture below shows what her leg looks like underneath. Those are PINS in her heel there.  Fortunately, she cannot feel any pain down there, nor much anywhere else below her hips.  Also the reason she recovers fairly quickly from leg surgeries.  Though…..I have recently discovered that she seems to recover fairly well from ALL surgeries.  I mean, I always thought she did, but it was confirmed recently in a conversation in a Spina Bifida Facebook group, where someone asked how long it took for their child to recover from MACE and mitrofanoff surgeries.  Ren had these surgeries a couple of years ago.  It was a pretty major surgery.  For the mitrofanoff surgery, the surgeon took her appendix and made a channel between her bladder and belly button, thus allowing her to cath through her naval.  (It has been a LIFE SAVER!)  The MA CE surgery involved the surgeon taking some of her large intestine to create a channel from her colon to the outside of her abdomen, about two inches across from her naval.  This allows us to flush her colon this way instead of….her bottom.  We do this every 2-3 nights, because she can’t, well, poop on her own.  So, onto my story.  In this conversation, people on average were saying that their child was in the hospital for 8 days, recovery taking a month to six weeks, including staying at home during that time.  I was like…um…my daughter was in the hospital for 5 days and back to school the next week, I think.

Back to her cast.  She needs this on for four more weeks, then they will remove it, and we will need to decide if/when we want her to be in a two-week long therapy program at the hospital.  She’d be there the whole two weeks, receiving like 3 hours of therapy a day, plus other stuff to fill in the days.  They said it is kind of like camp for the kids, and they all love it.   We live 40 minutes from the hospital, so…we will see.

Thanks again for all the prayers.  We DO appreciate them so much.

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10/28/15 Post-Surgery Update

Ren is recovering well from the surgery after a one-night stay at the hospital.  The surgeon said it would be 1 or 2 nights there, and in my head I knew it would be only 1 night.  Ren recovers fairly quickly from surgeries below her hips, as she has little feeling down there.  Plus, she hates the I.V.  Wait – let me rephrase that.  She DESPISES with a PASSION that I.V. in her wrist.  That literally was the only thing that was upsetting to her.  Always  has.  And, I cannot say this enough.  I really, really, really dislike staying in the hospital.  I mean, I know that Ren was the patient and went through the surgery and was the brave and strong one, and I am just complaining when I say this, but I really just don’t like it!  It is long, and boring, and claustrophobic, and uncomfortable, and forget about being able to get any good sleep. But, enough about me.  Ren did get a few visitors – Grandma and three great-aunts surprised her with a visit and bearing gifts.  She loved every minute, of course.

As mentioned in the previous post, the surgeon’s task was to straighten Ren’s leg out.  What that means is, he had to ROTATE her leg, which involved moving it and putting screws in, and a plate in the ankle.  I cringe as I think about it.  She is currently in a splint that goes up the whole length of her leg.  This must remain elevated at all times, which means limited movement and full-time wheelchair or sitting/lying down.  She has a rental wheelchair that allows for her leg to be elevated, and that seems to be working alright.  She is ready for it to be off already, so it’ll be a long road for her!

So, despite a little scare with her having a 101.4 fever last night ~ turns out she just needed to do some more deep breathing to get her lungs opened up more ~ she is starting well in her recovery.  Thanks to all of our friends and family who showed us their support and offered their prayers ~ It means a lot.  I ended up being more nervous for this surgery than I thought I would be.  I mean, she has been through several surgeries, including a few much more major surgeries in the past, so I don’t know why.  But, after she was rolled off to the operating room, with more prayers being said, I was at peace.

“And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Phillipians 4:7

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10/22/15 Upcoming Surgery

As the heading suggests, Ren has an upcoming surgery…..as in this coming Monday, assuming her little cold does not get any worse.  Her right foot and leg are turning outward, so we need to get it straightened out. It will be a 2 hour surgery, and she will need to stay in the hospital at least one night, possibly two.  She will need to wear a splint up to her thigh for the first two weeks, as well as keeping it elevated at all times, and then it will be switched to a cast below the knee for another 4-6 weeks.  Prayers for a safe, successful surgery, as well as a quick and uncomplicated recovery would be appreciated!  The hope is that with her leg straightened out, we can then focus on strengthening her legs and torso so as to learn how to walk with arm crutches.  That would be awesome.

Also – We had Spina Bifida Clinic last week.  The greatest update from our day long visit is that we are switching her bladder medicine, Oxybutynin, to a different medicine, because oxy crosses the blood-brain barrier, and T found a study that shows an increase of dementia in older patients who have been using this medicine.  The effect is the greatest if used 5 years.  Ren has been on oxy for about 5 years.  Though not sure if this is why she seems to have some cognitive delays, we are totally going to check it out.  So, she is now taking a one-a-day pill that does NOT cross the blood-brain barrier.  We shall see if anything comes from it.

Ren just finished up her last swimming lesson today.  She took 6 weeks of 1:1 lessons at the YMCA, and of course she loved every minute of it.  She LOVES swimming and would do it all day if we let her.  I see potential for her to swim independently some day!

AND – It is has been over THREE years since her last seizure. She is still being weaned off of her seizure medication and has gone down from 5 mL twice a day to 1 mL twice a day.  If all continues to go well, she will be completely off them in December.  Please pray for a seizure-free LIFE for Ren!

October is Spina Bifida Awareness month.  Please spread the word about how spina bifida does not mean a hopeless future, and walking does not equal happiness.  Just look at Ren.    God is good.  All the time.  And He does NOT make mistakes!

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