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!

 

So Many Recitals! Dance and Band and Church, Oh My!

We have been busy, busy, busy!  I have a lot to catch up on blogging about, but some of it will have to wait :).  In the mean time, here are some cute videos of the kiddos in their recent recitals.  The last few videos aren't really recitals, but Madi will put on a show whenever she gets a chance ;).



First off, here is Madi, dancing her heart out in dance class.  She sure loves dancing!  She uses her HKFOs and Rifton Dynamic Stander (mobile stander) to keep her standing tall with her friends.  She loves it and we are so proud of her!

 

Next up is Conner's performance at Branches Homeschool Co-Op, the homeschool co-op we go to on Thursdays.  He had so much fun and was so proud of himself.  We are really proud of him too!  The band also played at a local assisted living home, which Conner really loved, as did those that they performed for. 

He decided that next he wants to play keyboard, and I happen to know what he is getting for Christmas, so I think his dream will come true ;)

 

This is a little performance the kiddos did at Church a few weeks back.  The kiddos had a lot of fun, especially the girls.  Madi and Ramya both talk about wanting to dance on a big stage (like my niece... we go to her dance performances at high school a few times a year)... and they got their wish!

Here are a few cute little videos of Madi jamming on her new little Barbie guitar.  My mom got it for her for her birthday, and she loves it!  She is such a ham.  The first video is of her playing while she's standing in her HKFOs and Learning Tower.  The second video is of her jamming out after she got some fun colored hair, thanks to the hair chalk my birth mom, Deana, sent the kiddos.  She said she had rock star hair, and decided to make up a rock star song to match. 

 

 

Madi's New HKFOs

Today Madi got her new HKFOs from Ron at Hanger.  She LOVES Ron and was so very excited to get her new "up-ups".  She had picked light pink with ladybug decals and was thrilled when she saw them.  Ron put them on her and she kept smiling and saying, "this is amazing!!".  Once we got home, she showed off her new HKFOs to Grams, David's mom, as well as our neighborhood group.  She asked to get up in them and show them how she walked.  She proceded to walk around for quite a while.  She was glowing, and we were both very proud.  It was so sweet!  At Hanger they had put a picture up on the wall of her and Ron together when she was a little smaller.  They showed her it today when we were in and she was excited to be a star.  It was a great day for her!

 

Madi's New Cymbals

Madi's dance teacher had a special surprise for Madi at her last class.... a new set of cymbals!  Madi has hand clickers we bought her so she can "click" when the other kiddos "tap" during class, but her teacher thought it would be fun to try cymbals, so she can also "slide", and bought her a pair.  Madi had a blast with them!!  Here is a little clip of her cymbals in action.  She made sure to tell me she "danced her heart out" :)

 

 

 

Some New Fun (Therapy) Toys!

First off is our new Leckey stander.  This beauty came to us totally free (thanks SO much Gina for letting us know about it and putting it on hold for us!!) and works great for both of the girls.  It helps Ramya feel secure so that she can focus on standing (she has a big fear of getting dropped and is used to supporting herself with her arms, so we are working through that with her).  It's also nice for Madi's legs because it holds them in a different position than her HKFOs do, giving her a different stretch.  Her legs have been less tight since we started using it.

 

 

Our next new items are our new Floor Surfers (tummy scooters or tummy board) from Southpaw Enterprises.  They have an awesome contoured base and nice foam top for comfort.  It's been great for building Ramya's upper body strength and Madi loves how fast she can go with it.  In fact, instead of crawling long distances on her own, she'll request it so that she can get there faster.  Both girls are really having fun with them!  These were purchased using the money from our Amazon Associates Account.  A HUGE thank you to each and every one of you who purchase using our link, or share it with friends.  These have been amazing therapy tools for the girls, and they would not have been covered by insurance.  Here they are in use...

 



 

And last but not least...

 

A while back we bought Madi a set of used special tomato padded seats as she outgrew the toddler highchair we had at the table for her.  It held her booty great, but held her legs in an odd position because the seat was too long for the padding.  It also slid around on the chair a lot, changing her positioning during feeding frequently.  When we had her feeding evaluation, the specialist said that she thinks a big part of Madi's gagging/choking/throwing up during eating is positional.  She felt that getting Madi in the correct feeding position would help a lot with these issues.  We like the special tomato chair because 1- It goes with the padding we already had, 2- It isn't bulky but still gives her enough support and 3- It's easy to adjust and wash and 4- For a feeding chair, it's pretty affordable.  We could have requested it through insurance, but we are STILL waiting on the shower chair that was requested and fitted in January of this year so that she can take showers.  We were very ready to help Madi stop gagging during eating, and decided to use her Amazon money for one instead of going through insurance so that we could get it right away.  gh, We tried really hard to find a used one but never did.  We found a discount code, thouand saved a bit of money on it, which was nice!  So far it's been great and we've noticed a ton of improvement.... Yeah!!!  The foot pads don't match the pads we already had, but Madi doesn't seem to mind :).

 

 

 

Thanks again for all of your support.  We love our "village" and are loving our new equipment!

 

 

Whew... what a week... oh wait, it's Tuesday!

This week has started off with a bang!

Monday I took Ramya to the endocrinologist.  They agreed that the labs our pediatrician look to check hormone levels look good, but they said those tests aren't always accurate, as hormones fluctuate.  They are sending us for a longer test out of Thunderbird hospital where they will put hormones in her body and see what her body does with them (or something to that extent!!).  I guess it takes about 2-3 hours.  She will need an IV (boo) but it's a quick, awake, outpatient procedure, so that's good.  They also want an x-ray of her hand to try and check her bone age, as she is very small weight and height-wise for her age.  We were headed for an x-ray Thursday anyway, so we're just adding that one one.  The took a blood sample as well to test for a few more things that might be causing her lack of weight gain.  Fun fun!  Ramya did great with the blood draw.  She wanted to snuggle right in to me, which was totally ok with me, and then announced that it didnt' hurt too bad!

On Monday I also got our second post-placement report in from our homestudy agency, so that I could add photos and send it off to WACAP.  I read through the report and got a little sad when I read that Ramya's emotional age is 2.  Though I know that it is true (I figured she was somewhere between 2 and 3), and we expected her to be right where she is and are totally ok with it, it was still hard to read on paper.  I have no doubt that she will grow and change quickly, and I love her just the way she is, but it saddens me that International adoptions take so very long to complete and, therefore, contribute to our sweet kiddos getting so far behind.  She is doing amazing, though, and I am so thankful that God blessed us with her! 

We also got a special box in the mail on Monday from my wonderful aunt who spoils us.  My aunt and uncle live in Hawaii and always find special treats for us.  There were cute little things for the kids, and some very yummy things for David and I.  It was just the pick-me-up we all needed!!  The best part, of course, was the Hawaiian coffee straight from Hawaii!  It doesn't get any better than that! 

Today we headed down to Children's Rehabilitative Services (CRS) for Madi's appointment with Dr. Segal, her orthopedic surgeon.  Our appointment was at 9:45, but we didn't get to see him until about 11:30.  Of course I brought ipad, but forgot to check the battery, and it was dead.  Conner's leap pad worked for about 10 minutes, and then those batteries died too.  The kids did great, but it was just a long wait. We found a "Where's Waldo" book and I couldn't help but laugh every time Madi yelled, "Look!  I found Weirdo!  There is Weirdo!".  Madi was all smiles for Dr. Segal... until he needed her HKFOs off to check out her hips and legs.  That's when all heck broke loose!  She cried hysterically because she didn't want to take them off.  The long wait, the fact that it was almost lunch time, and the fact that she was having so much fun showing off, really didn't help either.  Poor Dr. Segal.  He tried so hard to make her happy, but she cried the entire rest of the appointment (about 25ish minutes by the time we made our next appointment and such too).  Ramya also decided she should get in a funk because Conner didn't like it when she tried to grab my phone from him without asking.  So, at that point, I had two melting down.  I apologized and thankfully everyone was very understanding.  Hopefully when Ramya sees him on Thursday out of Phoenix Children's Hospital (PCH) we will have a much smoother appointment!  Dr. Segal agreed that Madi's HKFOs are too small (again!!) and wrote a prescription for a new pair.  We will go see Ron in August to get Madi casted for a new pair, which she is VERY excited about!

Conner got a special treat today because David's parents took him to Jumpstreet after lunch.  He had a blast and loved getting out and getting lots of attention for a bit.  The girls also got to watch two episodes of Daniel Tiger while he was gone, and that made them very happy, so it was a win-win.  We limit TV viewing and I have the kids agree on what show(s) to watch for the day, so it's not often Conner agrees to Daniel Tiger, hence why they were so excited....

Tomorrow we will meet with a potential respite and HAB worker for Madi.  I pray she works out well!  Thursday we head down to Phoenix Children's Hospital so Ramya can see Dr. Segal and can also get 2 x-rays.  One will check her bowels and one to check her hand bones.  On Friday, we head down to Phoenix Children's Hospital again so that Madi can have a follow-up appointment with Dr. Zuniga, our urologist.  After that we will drive to Flagstaff to spend a few nights at my parent's cabin.  We can't wait!!  It will be the perfect end to a crazy week! 

In other news, I got a refund check from Phoenix Children's hospital today for overpayment.  Somehow they managed to over charge us by over $900!  I'm not exactly sure how that happened, but I am thankful they caught it and I am so not going to complain about getting the money back!

 

Dance Your Heart Out, Madi!

Madi just LOVES dance class and it doesn't get any cuter than this!  Go Madi, go!

 

 

(Madi uses her rifton mobile stander (backwards) and her HKFOs in dance class :))

First Dance Class!

Ever since we saw my niece dance at a recital, Madi has been asking to sign up for dance class.  I went in to our local community center (Conner does karate there) and talked to the instructor about modifying the class for her.  She was totally on board so we signed Madi up.  Today was her first day and she was all smiles!  She was totally on cloud 9!  Here's a photo and a video from her first day...

 

 

 

 

So fun!!  It is ballet and tap, so we are going to bring her little clickers to use with her hands during the tap part :).



That's How She Rolls!

Madi was very resistant to going in her mobile stander.... until we had her stand backwards in it!  She can get up close to everything now and loves having that freedom. Here's a few photos of her using it:

 

 

She is so much happier now!  I love it!



A Ramya Update and a Reminder of our Court Date

Today we got an update on Ramya.  She was standing up nice and tall in HKFOs that actually FIT HER!  This is huge, and I am so excited to see the smile on her face as she stands in them.  They also said that the therapist requested a walker for Ramya, so there are plans for her to get one soon.  I'm very excited for her!

I opened the description from the orphange to read about how Ramya is doing, and the very first sentence just broke my heart. 

Ramya is usually in her crib.

It was pretty hard to get past that sentence and read the rest of the update with any sort of joy.  All I can think about is my little angel just sitting there and how much of life she is missing out on.  With my background in Education and with what I know about brain development, I can't help but think about how many connections she is not developing because she is not interacting with those around her.  I want her out.  I want her home.  I am just not happy with how long it is taking when she is, quite literally, just sitting there.  I am so sad for her.  I know that she will be home soon, and I know that God's timing is perfect, but I am just struggling right now.  Please be praying for all of our hearts in this last little stretch before we get her home.

Our first court date is August 23rd.  Please pray that the courts see is favorably and that our next court dates are set up shortly after the first.  Please pray that we are approved quickly so that we can bring our little girl home. 

Thank you for your prayers and for helping us bring our Ramya home to us!

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
 

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!

A Piece of Equipment We Love

I blogged a while ago about getting Madi a Rifton Dynamic Stander (mobile stander).  I haven't updated about it for a while and thought it was about time!  I really love Madi's stander.  I love that she can easily wear her HKFOs to use it and that it keeps her upright and weight-bearing.  Another thing I love about it is that it puts her at eye-level with the other kiddos her age.  She can maneuver it very easily and get where she wants to go.  Most importantly, Madi loves her stander as well!

I've talked in the past about trying to vary Madi's activities while she stands up.  Usually that is a mix of spending time using the walker, spending time in the learning tower, spending time holding my hands to walk, getting carried in her HKFOs, and spending some time in her Rifton mobile stander.  Madi is two, so she likes to keep busy.  Changing activities often keeps her happy and also keeps her upright, which is so very, very important for her.  It's important for her bone growth, muscles, bowels and bladder, circulation, and so much more!

The only thing that I wish I could change about the stander is I wish it had a removable handle. I'd prefer to take this out, instead of Madi's wheelchair, but it's hard to use in busy parking lots and places like that. Because of the design, I have to bend over to push Madi, and it is hard to safely maneuver Madi around without killing my back and while watching Conner. Madi is amazing at getting around in it without help, but I always push her in the parking lot to keep her safe (ask her how much she loves that ;). She always yells, "NO! I DO IT BY MYSELF!" and gets upset at me).  I have plans to try and get someone to rig a little handle for me, so I'm hoping I can work something out there.  Other than the lack of the handle, the stander is amazing!!!

We bought a little table that works great with Madi's mobile stander.  We got it at Costco and it was only $20 but it is adjustable to four heights.  It fits when she is standing in her HKFOs, when she is in her stander, and when she is in her wheelchair; it's great!  I love easy and simple solutions that are affordable! Here's a picture of Madi using it in her stander:

We eat at the table, do stamps, color, paint, make food, and so much more.  It gets a lot of love!  In fact, it has some paint and ink stains to prove it!

If you want to check out Rifton's stander, you can go to http://www.rifton.com/products/standing/.  They also have a blog you can read at http://www.rifton.com/adaptive-mobility-blog/. 

We found our stander on craigslist and were able to buy it because of the money we get through Madi's amazon associates account.  Anytime you purchase through Amazon and use Madi's link, we get money back that we use towards therapy equipment and other equipment that insurance won't cover.  THANK YOU to everyone who purchases through her link for us!!  You are such a blessing!  http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20