Now for the Medical Stuff

Overall, though we've had plenty of therapy and appointments, the kids are all doing well and are pretty stable medically, which is a HUGE blessing.  Here's a quick update for each kiddo:

• Conner:  Conner had been back in speech therapy for about 6 months to work on his r's.   He was motivated to get them down and just exited in December.  Because that was the final sound he needed, he should be completely done with speech therapy now.  We are all proud of him!  He's been in therapy on and off since he was about 4, so this was a big moment to celebrate.  He wanted to pick dinner, so of course that's what he got!

• Ramya:  Ramya has also been pretty stable medically.  She's needed some wheelchair adjustments and needed her AFO's lengthened (she's had her wheelchair about 4 years, and her AFOs about two, so I'm thankful she's finally grown a bit), and also has been continuing with vision therapy and attachment therapy, and we are also adding back in some cranial sacral work.  She has OT, PT, and speech too, of course, but those will be ongoing therapies.  We just did a routine renal ultrasound and she will need a full brain and spine MRI soon as well, just to see how things are going.  We are praying everything looks good there.  Ramya continues to make progress in homeschool and therapy, and we are proud of her!

• Deena:  My little feisty Deena is doing great.  We had a bit of a scare when her phosphorus came back low at her last infustion/blood draw.  The doctors started talking about rickets, which would be no fun and would just further complicate her bone development.  I upped her vitamin D, which was also low, then we re-tested her.  Her test came back within normal ranges.  She had another draw more recently, which showed that her counts have continued to improve.  We were so thankful for that!  She also has not had another break since her September one. during therapy  This is HUGE and another big thing to celebrate.  She had her first bone density scan, and though it showed a significant defect, the doctor said her scan looked better than she expected.  Yet another big praise!  Her bones are responding well to her Pamidronate infusions and she has gained so much strength.  She spends much of her day standing and practicing walking and is highly motivated, which shows.  She's progressing quickly in physical therapy as well, which is awesome.  She's doing really well!

• Madi:  Madi recently got an ALF (Advanced Light Force) appliance in at the dentist, and we are hopeful we will start seeing changes in her bite, jaw growth, tongue thrust, sleep, eating, and breathing soon.  She wasn't a big fan the first few days, but she doesn't even notice it's in her mouth any more.  She goes back monthly for adjustments and they are pretty quick.  Madi is continuing with vision therapy and has also added in some cranial sacral work, in addition to her weekly OT and PT.  She also just had a renal ultrasound and will have an MRI as well.  That's a long, complicated story that has consumed hours to figure out, which I'll touch on later, but it should all be completed soon.  Madi needed some hormonal testing done with endocrinology, which was not fun at all, but it's over with now, and we have the answers we need.  She's has had a huge growth spurt, again, and no longer fit in her wheelchair or RGOs.  Her RGOs are now in, though they are currently back in the shop for some adjustments, and she's so excited to be back up and standing.  Her new wheelchair should be here next month, which is also exciting news.  She works really hard and it's so fun watching her grow.

Me:  I know, I know, you never hear about my medical "stuff", but today you get to.  I am so very thankful to be healthy and be able to do what my kiddos need, and not have many updates in this area.  Last month I was diagnosed with SIBO (Small Intestinal Bacterial Overgrowth).  I have a minor case, thankfully, but it was the answer to some uncomfortable tummy issues I was having.  I was constantly bloated, puffy, and retaining water, no matter how healthy I ate and how many foods I cut out.  I'd wake up first thing in the morning feeling bloated and full.  You'd think I'd be skinny because eating hurt, but I love to eat, so that never stopped me.  I've been on my treatment plan for a little over a month now, and I've felt so much better.  I am not eating many foods, because of the phase I'm on, and am struggling to keep my daily calories high enough, but I'm trying really hard to keep my calories and energy up so I can do what I need to with the kiddos.  My doctor allowed coffee, as long as I drink the Bulletproof brand, and I am sooooo thankful for that.  I've been able to continue working out, though I feel my muscles get tired quicker than I like.  It's all worth it to heal, though, and feel better.  Some of my symptoms returned recently, though I haven't had any new foods or moved phases, so today I had just bone broth and no food to see if that would remedy it.  Sadly, I feel worse today than I did before.  I'm suppose to do just bone broth one more day, and then if that doesn't work, I'll go back on antibiotics for a few another round.  Though the process can be long and I miss a lot of my favorite foods (sweet potatoes, popcorn, quinoa, salads, and so much more), I'm at peace with the plan.  The most important thing I can do is take care of me so that I can be the mom I need to be, and that's exactly what I plan to do.  I'm thankful to have found a good naturopathic doctor who is willing to dig for answers and keep me running strong.

Other than that, life has been typically crazy and fun.  The girls are currently in dance and have a recital coming up in April.  They've had so much fun practicing.

David took the girls to the daddy-daughter dance at a local Church, and they had such a wonderful time with him.  Three years ago, Ramya and Madi were headed to the daddy-daughter dance at our homeschool co-op when Madi had a seizure and couldn't attend.  Ramya was able to go, which was really special for her, but Madi still talked about how sad she was to miss it and how much she wished she could have gone.  When I read about the dance, I signed the girls up right away.  I'm so thankful the girls have a daddy who loves them so much, and who cherishes spending time with them.  

We had good friends visit this weekend and stay with us, which was so much fun.  We went to ice cream twice (man did that ice cream look good), had pizza (even that looked good, and I gave up on pizza a long time ago because it always makes me feel sick), went to the zoo, and just enjoyed their company and conversation.  

 Last night I was able to meet up with a few of my favorite mom friends, who have been there since Conner and Madi were little, and who helped welcome Ramya and Deena home.  I've missed my friends.  We've always been blessed with such an amazing support group, and moving away was hard. Between having friends visit, and getting out with my friends, my heart is happy and filled.  

I think that's it for now!  I'll update once the girl's testing is done and we know more.  Have a blessed and joyful week!

Madi's New RGOs

(Posting from my phone so please excuse the errors)

Madi has always had HKFOs (leg braces that go up above her hips) but she needed more stability and durability so we decided to go try RGOs (reciprocating gate orthotics).   They are bigger and bulkier, but wouldn't buckle or strain as she continues to grow.  We thought it may take her a while to adjust to them, but boy were we wrong!!  As soon as she got in them, she proudly took off.  She is so crazy strong and adaptable, not to mention determined.  We were all pretty thrilled!  She is getting some red marks so we are headed back to Hangar for adjustments, but overall we think it will be a great change for her.  Here are some photos and videos of her new RGOs.  

How Deena creatively passes the time...

And of course, chocolate for everyone helps too (It ended up being an almost 3 hour appointment!  The kiddos did great but oh man it wasn't fun)...

Madi Proving Those Doctors Wrong.....

"She'll never walk..."


I can't wait for Madi to walk up to those doctors who doubted her one day and show them they were wrong, though even if they weren't it wouldn't have mattered one bit.  She would still be every bit as amazing.  It just goes to show you that you can measure a child's level of function, but you can never measure their determination and inner strength.  

I can't believe how far she has come!  I am so proud of her!

(Please excuse my lack of make up, the mess, the bird that wouldn't get off my head, and the fact that this video was literally taken by an 8 year old :)).....

A Video of Ramya Walking

Ramya is doing really well with her walking and we are so proud of her!  For some reason I cannot find my older walking videos of her and I'm bummed because she's made such HUGE strides and I would love to be able to show everyone the difference.  The first videos of Ramya walking were just a few seconds long.  She was too nervous to have me step away and could also only take a few steps before getting tired.  She was afraid of falling and tired very, very easily.  For a while we took a break from walking and just focused on confidence, core strength, and building our leg muscles.  We also moved her from KAFOs to HKFOs (so from leg braces that went to her thigh up to leg braces that go up to her tummy).  We spent over a year just working on all of the skills leading up to walking.  I am proud to say she is now confident enough to take a trip around the kitchen without help!  Her endurance has also increased so much.  It's amazing seeing her transformation!  Here's a video of her cruising in the kitchen....

 

An Updated Video of Madi Walking in her HKFOs Using Arm Crutches

Madi told me that she wants to wear her "up ups" (aka hkfo's) and use her walking sticks to walk down the isle when she gets married (in about 20 years I say ;)).  I told her she better get to practicing!  She's been doing awesome and has been starting to balance so much better. She's now able to take a few steps on her own which is a huge accomplishment! Just a few months ago she couldn't balance, let alone take steps.  I think the therapeutic horseback riding is really helping her with her balance and core strength.  The doctors said she would never walk considering she is an L2 level.  One thing the doctors can't judge when they determine someone's level of lesion, however, is their level of determination; and that is what makes ALL the difference!  Some days she doesn't feel like walking, and I don't force her to, but mostly she really loves being up and mobile.  She's so very proud of herself too!  Here's a video of her and our new PT Kelly....

Ramya's New HKFOs

On Tuesday Ramya got her new HKFOs.  She was SO excited!  She picked a zebra print and really loves them.  Hopefully that will be good incentive to be up and standing in them!  Madi also got her HKFOs adjusted, so both girls have a great fit right now.

Ron adjusts our HKFOs for us while we wait, which is wonderful!  It does take a few hours, though, between our time in the room with him and him adjusting them, so we brought our school work and homeschooled on the road.  I love being able to do that when we need to!

On the way home we stopped at Urban Cookies and got gluten free, vegan donuts.  Well, Conner and Madi did, that is.  Ramya didn't want one and I try and avoid sweets.  That sure made the kids day!

Yeah for standing!

  

Madi Singing While She Walks in her HKFOs

This girl cracks me up.  I love her confidence and creativity.  She brings so much joy to our house!  She loves to make up songs and is constantly singing.  Here's the most recent one she sang while walking.

 

Our Firefly Upsee is Here! Come See us Walking... Spina Bifida Won't Slow us Down!

We have had such a crazy week that I did not get a chance to update yet, but our Firefly Upsee is HERE! 

Both girls are really enjoying using it, and I think tomorrow I'll let David take a turn walking with them.  They will love it!

Before I get to the nitty gritty, here are videos of Madi and Ramya walking in the Upsee for the first time...

 

Madi went first, as she was done eating first. I held the straps with her, then realized I didn't need to.  Also, her foot slipped out a few times, but that was solved by using her chunkier shoes meant to go over her HKFOs versus her skidders.

 (Notice Conner's sweet voice in the video (he was taking the video)... he is so proud of his sisters and is such a great encouragement for them!)

(P.S.  My house is not usually that messy!  Please ignore our mess!)

 

With Ramya I went hands-free, and it worked just as well.




So now to the nitty-gritty, and then I will post a few pictures as well.  The firefly is great for the kids. It promotes a natural gait for them and is very comfortable.  There are straps that attach them to me that were designed to move as we do, giving them just enough flexibility.  I held the straps at first because I thought they were lengthening, but then I realized they weren't, they were just moving with us.  It's a perfect design! 

The Upsee is not a crotch dangler, like I was worried it may be, so the girls bare their weight to be able to use it.  Because of that, Madi needs her knees locked or her legs buckle.  Ramya, however, is able to have her knees unlocked, as seen in the video.  Madi usually walks with her knees locked anyhow, so this is a natural walking stance for her.  Right now Ramya is walking with her knees locked when she is not in the upsee, but our goal is unlocked, so it's nice for her to get to practice.  Because she had to do some of the work, though, she did get tired fairly quickly.

The upsee is easy to adjust and put on, once you get the hang of it.  I wish they made another size up, maybe I will e-mail and suggest it.  Because of the bulk of the HKFOs under the vest, it's already a little snug on Madi.  We have some time in it, but wish it would work for larger children.

The Firefly Upsee did not hurt my back, which I was afraid it would.  I am used to walking hunched over to help them, so this actually was a nice change.  It did put some pressure on my lower back, but not much, as the girls took most of their own body weight.

My one complaint is that I cannot walk with my natural gait when I am walking with them.  My knees hit the back of their HKFOs, and it rubs my knees and leaves red marks.  In order to compensate for that, I have to walk bow-legged.  I also can't pick my feet up much, so I shuffle a bit.  It's not the most natural or comfortable gait for me, but it really is not too bad.  It won't keep us from walking, that's for sure!

So how will we use the Upsee?  This is what I envision...

1. Grocery Stores
2. Dance Class (it frees up their hands)
3. Miracle League Baseball
4. Therapy
5. Walking in the house for playing and for helping mom with chores and the such
6. The mall
7. The Zoo
8. Treadmill Walking

I was hoping to be able to use this hiking, but because I can't lift my feet up well, I don't think it would be safe.  I think it's mainly because of where my knees hit their HKFOs.  For now, we will stick with having the girls go in the toddlerhawks on our back.

Please feel free to ask any questions!  You can comment here or e-mail me at jamie_lugo@hotmail.com. Here are a few more photos...

 

Gearing up...

 

 

 

The straps are very easy to adjust.  There are straps at the top to help them stand up straight, and there are also straps at the bottom to give them extra support.

 

I was able to sit behind Madi while she worked at the table, without unstrapping, which was a nice little break.

 

The girls loved accessing their environment in a new way!

 

Ramya's New HKFOs... Spina Bifida Won't Keep Her Down!

Ramya had KAFOs (leg braces that went up to her thigh), but she was really struggling with walking and posture, so we had her fitted for HKFOS (leg braces that go up to her tummy).  Ron, at Hanger, did an awesome job as usually, and she loves them!  I can't wait to work on walking with her.... spina bifida isn't going to keep this girl down!  Here are a few pictures of her new braces....

 

 

We have two appointments downtown this week, so I decided to take the kiddos to Whole Foods for lunch to make our first trip special.  The love their gluten free pizza (you can even get it with dairy free cheese!!), and also enjoyed some sorbet for dessert. They were pretty happy kiddos!

 



Thursday we head down to see Dr. Goggins, our new orthopedic surgeon.  We are praying we can get a good picture of Madi's scoliosis and a clear game plan on how to proceed with detethering surgery.  I will keep you updated!

Take That Spina Bifida.... Updated Videos of Madi Walking in her HKFOs

Here are some updated videos of Madi walking in her HKFOs.  She has such a huge drive and determination, she amazes me every day!!  She is so strong and beautiful, inside and out, and is truly such a blessing.

Madi has a higher lesion of spina bifida, about an L2, and the doctors said she would never walk.  She is working really hard on proving them wrong! 

Madi has been expressing a desire to walk "all by herself" so Tami, her physical therapist, brought her this walker because it has a seat.  The seat prevents her from falling if she slips or loses balance.  For a while she wanted nothing to do with it, but the other day, she wanted in it and just took off.... literally!  She is a rock star!

 

An HKFO Kinda Day

Yesterday was an HKFO kind of day.  We had an appointment at noon with Ron Whiteside, who makes the girls leg braces for them.  We had to leave 30 minutes early to get there in time, so I packed a lunch to go and we headed out.

First Ron casted Ramya.  She currently has KAFOs (leg braces to the upper thigh), but they just aren't working well for her.  She walked in the orphanage, but was not taught how to walk correctly with the correct posture, muscles, etc..., spent a lot of time hanging on her crib, and also dislikes putting weight in her legs and using them, so they just aren't working well.  She also tries to do everything with her arms.  We (me and Tami, her physical therapist) decided that HKFOs (leg braces that go up above her hips) might just be better for her for now.  Eventually she can go back down to KAFOs, and the ultimate goal is AFOs for her, but we think we need to go up, let her muscles strengthen, get her posture correct, and all of that good stuff first.  Hopefully it helps her!  She does well when I am physically holding her body in the correct posture, but sometimes I actually have to use my arms for other things ;).

 

 

Next up was Madi.  Her HKFOs have been hurting her, so she has not been wanting to be up and standing.  She gets tight really fast, so being up is really important.  Not to mention it helps her bowels, bladder, bone density, circulation, hips, and so much more!!  Ron fixed those for Madi, so now she's a happy girl!!

 

That's all for now!  Tomorrow is Ramya's neurosurgeon appointment, so I'll be back with more updates soon :).  I pray you all have a blessed and wonderful day! 

 



 

Our Bad News Appointment Today

Sigh.

When you are a momma of a kiddo (or two ;)) rockin' Spina Bifida, there are a few things that always run through the back of your mind.

1. How is that shunt working? 
2. How is their urine looking today?  Do I think they are still UTI free?
3. Are their bowels up to par?
4. Is there any tethering going on I can't see?

There are a few more, but I'd say those are the big ones.  A little cold, every flu, every bout of crankiness, you question if it could be more.  I don't think this is a bad thing, I think it is just being an aware parent, and part of what goes along with the job of raising a kiddo with some extra health considerations, but regardless, it is always there. 

Today we saw our orthopedic surgeon, Dr. Segal.  He answered #4 for us for Madi.  Bummer.  We knew this day may likely come, but it's a day that I think every parent of a child with spina bifida dreads. 

Before our appointment, the nurse wanted to do a spine x-ray, as at our last appointment, Dr. Segal mentioned she had a slight curvature to her spine and he wanted to check it out.  Turns out there is a curvature.  A big curvature.  She has scoliosis at about 50%.  That's fairly major, and the ramifications of that percentage are not so wonderful.

There is a good chance Madi is so curved because her spine is tethered.  Every child with spina bifida that has had a back closure surgery IS tethered, however, if that tether becomes symptomatic, it's time to treat it, which means a de-tethering surgery. 

The good news is that a de-tethering surgery may stop the progression of the scoliosis.  Dr. Segal said anything over about 40% curved is not often fixed with the surgery, but it would hopefully stop the progression.  The downside of the surgery is that about 10% of children come out with less functioning than before the surgery.  It also leads to more scar tissue, which can then lead to more tethering, which then, of course, can lead to more surgeries to de-tether the spine.  It's a cycle that you do not want to enter unless you have to, though it is important to address the issues and have the surgery if it is necessary, as degeneration can progress by not doing the surgery. 

Dr. Segal wanted us to see Dr. Moss, our neurosurgeon, and talk to him about Madi's symptoms and the possibility of surgery.  Thankfully we were going in to see him next week anyway, so the timing is perfect.  Madi also has to get fitted for a scoliosis brace.  She will need to be in the brace the entire day, unless she is standing, or unless she is sleeping.  I made an appointment with Ron, our go-to guy at Hangar, for this Friday.  I am praying this will be an easy transition for Madi and that she will not hate the brace.  Tami, our PT, came with us to the appointment (This is the first one she has been able to come and I was so thankful to have her at this one... that was totally a God thing) and asked Dr. Segal what that means for her mobility.  Does that mean she has to be in her wheelchair at home, or can she still crawl and climb as normal?  (As of right now, wheelchairs stay in the car for when we are out and about, and we crawl, get held, or stand in the house.  I know we can't/won't do this forever, but for now, I feel it is best for the girls.).  Dr. Segal said that there would be know way we could stop Madi anyway, because she has such a determined personality, so there is really no point in trying.  He said Madi can resume normal routines in the brace, so that is great news!

Before we agree to the surgery, there are a few things I feel need to be done at our appointment with Dr. Moss, her neurosurgeon.

1. Madi's x-ray today was taken sitting up.  Because her left hip is dislocated, though, and her right hip is not, her body doesn't sit level.  Though I do fully believe she is curved, I think the percentage may be accentuated because of the way she sits.  I would like them to x-ray her again, but this time laying on a table, so that we can see how the spine looks at that point.  If it's still 50%, then that's ok.  It is what it is.  I just want to make sure.  Also, if it's slightly off, and she's at say 30% or so, then the detethering may help to reverse the scoliosis, which would be amazing.
2.  I would like to try and establish a baseline for Madi's spine, as this is the first time we have checked for scoliosis.  Madi had a sedated MRI done about 2 years ago where they checked her spine.  I would like Dr. Moss to review the scan, specifically looking at it for the degree it is curved, and compare it to her current x-rays.

After we review those two things and talk with the neurosurgeon next week, we will likely have a game plan for how to proceed.  I will keep everyone updated. 

Though today's news was not what we were hoping for, we know everything will be ok. After drowning myself in Starbucks and talking things through with David and my mom, I feel more at peace about how to proceed.  Madi is such a spunky and determined little girl, and I know she will not let this slow her down.  Though it looks like a setback, I know in reality it will make her stronger.  I wish you could have seen her today.  She was in her HKFOs, standing tall. She walked (with Tami holding her hands) right up to Dr. Segal, looked at him in the face, and said, "I want to walk by myself!"  I fully believe one day she will.  We have been talking about getting her a device like a TAOS or gait trainer to help her be able to walk independently, but Dr. Segal says he does not think it would be a good fit for her, as it would do too much work for her.  He also fully believes that she will get to the point where she can walk on her own (meaning walking in her HKFOs using a walker or her arm crutches, without needing the help and support of an adult) one day, sooner rather than later, and told her that.  He told her to keep working hard and getting stronger, and that she would soon be doing it on her own.  That answer seemed to satisfy her :). 

Please be praying for wisdom and guidance for Dr. Segal, Dr. Moss, David, and I.  Choosing surgery is not always an easy thing to do, especially when it is not life and death and there can be so much grey area, but sometimes it is just so important (like it was with her vesicostomy surgery).  The idea of another surgery with more anesthesia, more antibiotics, and more recovery time, is not ideal, but we really want to do what is best for Madi in the long run. 

Thank you for praying for our family and for walking our journey with us.  Your love and support truly do mean more than you will ever know!

 

Our New HKFOs Are Here!

Today was appointment 1 of 2 this week, and thankfully, after tomorrow's appointment to get Madi's wheelchair adjusted, we are done for THREE months (other than therapy)!  WOOT!  Today we went and picked up Madi's new HKFOs.  Ron Whiteside, at Hanger, worked really hard on them and they look amazing! He finished in record time for her too!  Madi was being a bit of a stinker and not wanting her picture taken, so I'll have to get some better photos tomorrow.  Poor Ron was trying so hard to get her to smile, but she just wasn't having it.  We're so excited to have her HKFOs (aka "up-ups") back!

New Videos of Madi Walking

I just realized I never updated any videos, nor had I started including Ramya's walking videos.  I will start posting those below this post.  Look for the posts at the bottom in red :)

I just thought I'd share a few new videos of Madi walking.  She got her new HKFOs not too long ago, and she's adjusting quite well.  She has less stability in them, but also more movement.  She is able to kick her legs out a lot better now.  She got her first pair of HKFOs at about 22 months, but outgrew those pretty quickly!

This video was taken last week.  You can tell when she started getting tired because she started jumping.  Jumping in her HKFOs is one of her favorite things to do, though! 



This video is from today.  You can tell she has a lot more energy.  Towards the end she starts getting bored of her walker and tired, so we switched her to her shopping cart (which is the last video), which she had fun with.  The goal is to keep her up standing and practicing, but not to the point she gets frustrated and doesn't want to be up.  We change up her activities pretty often to keep her happy and engaged.



... and with her cart...



~~~~

Here's a video of Madi walking at 6 years old, using HKFOs and arm cruches....

http://www.aworthyjourney.com/2015/04/an-updated-video-of-madi-walking-in-her.html


~~~~

Ramya walking with her HKFOs and walker at 8 years old...

http://www.aworthyjourney.com/2015/04/a-video-of-ramya-walking.html
 

Madi's New HKFOs (AKA Up-Ups)

Madi got her new HKFOs today and is SO SO excited!  Ron at Hanger re-did her design.  This one will take more strength, but will give her more mobility at the same time.  She can kick her legs so much better in them!  We took her old HKFOs and are took off the H (hip) part so that we try using them as her night-time knee immobilizers.... that's one way to reuse and recycle, right?!?!? :).  I'll get a video of Madi cruisin in her new up ups tomorrow for everyone to see them in action! 

Being great waiters!  The little girl on the right is Kaylynn, whom I watch 3 days a week.  Conner is so good with her and she is such a little sweetie!



YEAH!  Time to try them on!  (pardon the chocolate from her granola bar on her clothes ;))

Left... old; Right... new

My kiddos sure do love Ron!



A Quick Update on Our Day of Surprises

The first surprise we got today was when we took Madi to get her HKFOs adjusted by Ron at Hanger.  He said she had just grown too much and there were too many adjustments, so she is getting new ones.  He casted her right there on the spot!  He's going to change things around a lot to give her less trunk support, but more hip support.  I'm excited to see what he comes up with.  I love that Madi loves Ron.  She gets so excited when she sees him and it makes the visit so much nicer.  He is really an amazing guy.  He was given an award at our local Spina Bifida Association party (more to come on that in another post :)) for a lifetime achievement award because of the many, many lives he has touched.  We love him!  Anyhow, Madi should have her new HKFOs in about 2-3 weeks!  We are going to keep the bottom half of her old pair to use as knee immobilizers at night, since she is supposed to wear those to keep her stretched out but they are a bit of a problem because they always pinch her funny and stuff.  Here she is getting casted...

She did great!  Of course, we had to keep Conner busy, so Ron gave him some scraps of the material they put under the casts so that the casts don't stick.  Luckily Conner is a very bright and creative boy and he got straight to work casting his Bionicle!  Conner gets drug around to a lot of appointments, and I'm thankful that he does so great.  He's such a great little boy!

Our second surprise of the day is that our dossier paperwork here is done and is officially on the way to India.  Well, I shouldn't say our paperwork is done, because it's not ever going to be done (the e-mail containing the information about our dossier came with many more papers to fill out :)), but it is finally on the way to India and that is HUGE!!  Please pray that our paperwork is processed quickly and that we are approved.

Yeah for a great day!

Does it get any cuter than this?

Nope, it doesn't!

P.S. That shirt was David's when he was a little boy!!  Isn't that cool?!?!?!?

Sometimes Doctors Are Wrong

Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won.

-- Robert M. Hensel

When you first find out your precious baby has spina bifida, your world is thrown upside down.  You search for answers, only to find that there really are no good answers, because all kids are so very different.  Looking back, most of us feel like we wish we had known then what we know now, because we would not have worried or shed tears.  We would have known everything would be ok.  The advice of well-intenioned doctors just seems to make it all worse.  Instead of hearing about all the things our children WILL do, we get the laundry list of what they won't.  And the funny thing is, most of the time, they do!  Our children shine!  Don't get me wrong, we love our doctors.  We covet their wisdom and advice, and we put our children's care, and lives, in their hands, but that does not mean that they are always right.  It does not mean that they can predict what our children will be like.  Unfortunately, some lives are ended early because of the picture that is painted of what their life "will" be. 

Here are some stories of how our children (and adults living with spina bifida) are redifining spina bifida every day.  Stories of children and adults showing the doctors who said they wouldn't, and the world who said they couldn't, all that they CAN do. 

I choose not to place "DIS", in my ability.

-- Robert M. Hensel

Our doctors said Alyssa wouldn't have bowel or bladder function. But my barely 2-year-old is currently potty training at the same level if not earlier than her "normal" friends. It's not TYPICAL for a child with Spina Bifida to have that function, but in her case, those particular nerves must have somehow been spared from damage.
Any time I hear "she can't" or "she won't", I remember the ending of the story, "Why a Bee?": The bee was the biggest problem of all, so the teacher sent her to see Doctor Owl for testing. Doctor Owl said the bee's wings were too small for flying and they were in the wrong place. The bee never saw Doctor Owl's report, so she just went ahead and flew anyway.

No doctor can tell you exactly what your child will be able to do, whether your child is born with a disability or not. Medical journals can spit out statistics, but they can't factor in a child's level of determination. Doctor Owl may be well educated, and he may have a lot of fancy initials behind his name, but he doesn't know my stubborn little bee.

The doctors said that I could never do gymnastics but here I am with my
medal!

Mikayla

When we received the spina bifida diagnosis, our world stopped. The first few things we heard out of the doctor's mouth was "Your son has spina bifida, he will have no quality of life. When would you like to abort." That statement still mortifies me!

Our son Tanner not only has an awesome quality of life, but he is happy living it! This kid never ceases to amaze us as his parents. When there is a will, there is a way. And Tanner always finds that way. :)

After Tanner was born we were told things like.... He won't ever crawl, stand, or take steps.... let alone walk. Tanner has been crawling for over a year now, is standing with assistance, and cruising along the furniture! He is also learning to use a mini walker.

Tanner is the light in our lives, and we would not change him for anything!



After we got the diagnosis I was sitting in my OBGYN's office waiting to be seen and she came in and asked me how I was. I told her "fine". And she looked at me and said, "No you're not. I read your chart and know the diagnosis you received." I told her that yes I am scared to death but we will make it. She said, "You may be fine now but just wait until she's born. Your life is going to be really hard then."

Really? When I look at this face I don't see "hard life". I see one of the most beautiful gifts a mother could ever receive. She is a blessing to this world. Not a burden. EVER!

The doctors told us our baby's life "wasn't viable" and that we should deliver early and let him die (i.e. terminate).Bryce is now 20 years old, plays a mean swing beat on the drums, has a superb jazz CD collection (of which he has memorized all the liner notes--need to know when a song was written? recorded? by whom? Just ask Bryce!), emails and Facebooks his friends constantly (also having memorized all their birthdays, all 284 of them), and is an artist at a studio for outside artists, selling his paintings for over $100 each. I'd say he's not just "viable" but thriving, blessing and enriching all who know him.



The doctors told us our nightmare was coming true.
But instead...we got the little boy of our dreams.

The doctors said he would be "incompatible with life."
But the truth is, our lives are incomprehensible without him.

My doctor told me that Nickolas would negatively impact my daughter's life and would be a burden on our family.
HA! I don't think so!

My parents were told I wouldn't live overnight, and the humane thing to do was to let me go. I'll be 28 in August. I think I'm a little past my expiration date!

The doctors told my parents I wouldn't go to mainstream school. I now have a degree and nearly have a diploma too.

At 19 weeks pregnant we found out we were expecting our second little boy- mister Logan Blake- but we weren't expecting to be told that they detected an open neural tube defect... Nearly weeks later and at almost 21 weeks- we received the official diagnosis of Logan's Spina Bifida and the detection of Hydrocephalus on his brain. God had to have blessed us with a good doctor that day because instead of being pushy and telling what our child would not do- instead he told us the possibilities of what our child might not be able to do and after we decided against termination he immediately sat us down and informed us of what would happen when he was born and if he would need a shunt...


Today- our Logan is 2 years, 8 months and thriving!! His smile is captivating, he has the best sense of humor, he is rolling all over the place, commando crawling, babbling up a storm, pushing up on his hands & knees, he spoon feeds himself & will sit up on his own for a few minutes... These are things that we didn't think he would ever be able to do or questioned when he would do and he continues to amaze us daily at whatever new thing he learns & we thank God for our miracle....



Doctors told me my baby would never walk, talk or "be normal" when he was diagnosied with Spina Bifida when I was 17 weeks pregant. Well they were WRONG... really, really WRONG! It might have taken over 3 years, but he talks non stop now and there is no mute button on him! It might have taken 4 1/2 years, but he walks just fine thank you very much. And who wants to be "normal" anyways? But I wonder what those same doctors would say to see that same little boy SURFING 10 years latter?? The little baby who I was told would never walk not only walks, but is a happy surfer dude who be 11 in the blink of an eye!

My parents were told (back in the day) I would basically "be a vegetable, mentally and physically." I'm a college grad, teach adjunct at a university, run my own business, and am married with three kids.

They said I'd never walk, but I can climb a ladder
Jaici 4 1/2 yrs old

As a 9th grader I was doing terribly in English in school. After a "D" for the 2nd grading period, my parents went to see the teacher to see what could be done to improve. Because of my CP, I am unable to manually write and was trained early to use an electric typewriter (I know, so old school). During the course of their meeting (my parents and said English teacher), my mother expressed the concern that unless my English grades improved I wouldn't be able to get into college. The English teacher was aghast, "College ! I gave him paper and pencil and he can't even write!" College indeed ! I have a BS and MS in Math and a PhDin Chemistry (although I'm not a chemist).

- Mike
(note- Mike lives with Cerebral Palsy, not Spina Bifida, but has an amazing story that needs to be shared!  This picture is of him graduating with his PhD when he was 53!  What an inspiration!)

The doctors told me that i would be paralyzed from the waist down...I am now doing zumba and love it.
- Isabel

Here is a pic of Caitlin crawlingup the stairs.  They said she would never crawl up the stairs.  She has just reached the top in this picture.

At our first Ultrasound, we were told Emmett had Spina Bifida, Hydro, and clubbed foot. The forecast was stormy, and the more we read, the more we listened the worse it sounded. We were asked on that day if we wanted to keep the Baby. Both of us had no doubts. A year after his birth we were told to just put him in a caster seat, get him used to using the wheels, because he would never walk. A year later, our boy started to pull himself to stand, then a year after that, he started walking along with the assistance of a small plastic chair. The Physio told us he didn't have enough strength to hold himself up, she said he would need to wobble forward using the walker and a stander. 6 months later, he showed all of them (8 Doctors were taking pictures on their camera phones), everything halted while he walked down the hall and back again using just a walker. Now here we are 4 years after their grim outlook, Emmett is using KAFO's, and a walker. He is so proud and tall. He keeps going further daily.....Our boy is a tenacious angel, and we couldn't be prouder!! :)

The Doctors said Jazmine will never move her legs, that she will have mental retardation,that she will for sure need a shunt for hydrocephalus and catheters to help her urinate.

Now Jazmine is 21 months super smart, walks on her walker and stands up holding up to anything she finds on her way, no shunt and no catheters and we see all her doctors only once a year for follow ups( neuro, ortho and urologist)

After receiving our diagnosis, we went through the MOMS eval, hoping to learn more about Spina Bifida as well as the fetal surgery. The neurosurgeon (whom we still go to and love) said, "Based on his L2 lesion, even with the fetal surgery he WILL need a shunt, and he WILL use a wheelchair by the time he's in high school." At the time it was the end of the world and I didn't stop crying the rest of the day. (By the way, he is turning 5 on Friday and does not have a shunt.) The next day I spoke with an ethicist, and I told him that I had talked with a SB nurse who told me that she has a few patients who RUN into clinic. He stopped me and said, "She should not have told you that. That is not true. Your son will never run."


Really?




  And a few others....


When I was in 6th grade my Orthopedist told me that I couldn't run, ( I was on the school basketball team at the time!).

-Liza

The doctors told my mom that I wouldn't live past the age of ten. I'm turning 26 in less than a month and I know have a college degree and a job. He also told my mother that my legs wouldn't grow. I was mostly legs till I hit my major growth spurt in my teens.  

You all hear a lot about my little Madi.  The doctors said she would never walk.  And she probably never will.... because I can't get her to slow down and stop jumping in her walker long enough to actually "walk", ha!! 

We, the one's who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as a handicap, but as a well intact human being.



-- Robert M. Hensel

If you want to share your child's story, I will happily add it :).  Just e-mail me your story and a photo or video at jamie_lugo@hotmail.com