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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Monday, June 30, 2014

Beating the Heat... Our Summer Fun with Marshmallow Catapults

When I saw the instructions for this on itsalwaysautumn.com, I knew my kiddos would love it!  We made them today and they were easy and fun.

What you need...
  1. Large or jumbo marshmallows
  2. Plastic spoons
  3. Rubber bands
  4. Tape
  5. Skewers
  6. Something to launch (m&m's, small marshmallows, marbles, etc....)
What to do...

First make your base with 3 skewers and 3 marshmallows...

 
 
Next add the top of your pyramid using 3 more skewers and 1 more marshmallow...
 


Tape the spoon to a skewer.  Put 1 rubber band over the marshmallow on the top, so that it goes just under it.  Put the spoon/skewer through the rubber band and in to a marshmallow...

 
 
Have fun launching stuff!!  


 
video


 

Beating the Heat... Our Summer Fun with Exploding Sidewalk Art

My kiddos had a lot of fun making exploding sidewalk art.  We found the directions at http://www.growingajeweledrose.com/2013/05/play-recipe-sidewalk-chalk.html.  (Ramya was still eating (after 1 hour, we begin our activities, we can only wait so long, and even the smallest meals take over an hour to eat most days, for every single meal), so she didn't help with set up, but she did enjoy watching them explode.)

Here's what we did...

First gather your supplies.  You need a box of corn starch, a container of white vinegar, a box of baking soda, Ziploc bags, and paper towels. 


Add 4 tablespoons of corn starch to a bag...


 
 
Add 1/2 cup of white vinegar...

 
 
Mix it together and then add in a few drops of food coloring...


 
Be prepared for a mess....

 
Store all of your bags together.  We put ours in a small plastic bin.
 
 
 
Make baking soda pillows by pouring a nice big pile of baking soda in a paper towel and fold it up.  We kept ours in a bag to keep them closed.
 

 
 
Go outside.  Take one chalk bag and put one "pillow" in it.  Zip it up very quickly, shake well, and quickly put it down.  It should pop.  Ours didn't pop on their own, so we helped them.  The girls didn't want to run over them with their wheelchairs, but Conner had no problems running and jumping on them.
 


 
 
Here's a video of one popping....
 
 video
 
 
We talked a bit about why mixing the vinegar and baking soda caused a reaction, which they thought was interesting. 
 
The kids declared this their favorite summer experiment so far!



 

Beating the Heat... Our Summer Fun with Build-A-Bear

The kiddos hadn't been to build-a-bear for a few years, so we decided to take them and they loved it!  They have a hand-powered petal, instead of foot powered, so the girls were able to fill up their bears (well, ponies) as well.  Madi also really loved that her pony needed surgery on it's back just like her!  Here are a few pictures of our fun day.....










 
 

 

Saturday, June 28, 2014

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!

 

Wednesday, June 25, 2014

Ramya's Appointment with the Orthopedic Surgeon

On Monday we trekked back down to Cardon Children's Hospital to see Dr. Goggins, our orthopedic surgeon, but this time for Ramya.  This was her first visit with him as she previously saw Dr. Segal with Madi. 

Dr. Goggin's examined Ramya and said she looks good... her hips seem to be ok, her back seems to be straight, and he agreed with our decision to move up from KAFOs to HKFOs.  He was in a cheery mood and spent a long time with us.  It's so much nicer to see doctors out of their private office, instead of CRS.  At CRS they always seem rushed and stressed, but are always so much more relaxed in their offices. 

After the hospital I decided to take the kids to Butterfly Wonderland.  We have never been, and it's on the way home, so I figured it was about time!  The kids had a blast!  There was a 3D movie, a place you could view chrysalises of all the different kinds of butterflies they get, a really neat habitat with thousands of butterflies in it, a small aquarium, and a few other exhibits with bees, ants, and other desert creatures.  The really loved the 3D movie on the butterfly life cycle and butterfly migration.  They kept reaching out and trying to touch the butterflies.  They also loved the butterfly habitat and got very excited when a butterfly landed on Madi's foot and stayed for a while.  Ramya did NOT want the butterflies to touch her and kept hiding behind me, but she really did have fun too.  She loved looking at the butterflies, she just didn't want them near her.  Here are a few pictures from our visit...


 
(after they emerge, they catch them and put them in the large habitat)
 
 

 
(This is the one on Madi's foot)






 
Conner wanted to make sure that Ramya knew all about scorpions and centipedes (part of their extra exibits).  He insisted on lifting her up himself and explaining to her that if she ever saw one, she should not touch it, get away very quickly, and tell mom.  I made sure to hover just in case she slipped, but he did great and was quite proud of himself.

 
 
 
Our next appointment with Dr. Goggins isn't for 6 months for both girls, and this time, I think I can coordinate them!  YEAH!


















 

Sunday, June 22, 2014

Updates from our most recent appointments.... Neurology, Orthopedic Surgeon, PT, OH MY!

I just realized I never updated from our appointments last week! 

On Thursday the week prior (the 12th), Madi saw Dr. Goggins, our orthopedic surgeon, at Children's Rehabilitative Services (CRS).  We got some better x-rays so we can better see how her scoliosis is doing.  Her degree of scoliosis when standing in her HKFOs was 42 degrees.  When she was laying down, though, it went to 27 degrees.  He felt it was a good sign that her back is still flexible.  He didn't want to tell me if he thought she was a good candidate for a detethering surgery and he told me he wasn't a neurosurgeon.  This is why I hate that we don't have a multidisciplinary approach here in Phoenix.  Instead of the doctors talking to each other, we talk to each one separately, often getting passed back and forth.  It really frustrates me.  Don't get me wrong, I'm thankful we have amazing doctors here to help us out, but I just wish the doctors would talk  to each other as well in order to come to a conclusion about what they felt was best.  Anyhow.... He felt that waiting 6 months and x-raying her again would tell us more about if she is stable or changing.  He did also say her scoliosis and tethering are in the same area, meaning her scoliosis is likely from the tethering, but we don't know if de-tethering would correct the scoliosis.  He also said that he didn't see any big urgency to do anything about her spine right now, so that was good news.  I have an appointment set for 6 months, but also have an e-mail in to the neurosurgeon to see what he says about her degrees of scoliosis. 

On Tuesday I saw the dermatologist.  I have a few spots I like to keep an eye on (I've gotta keep myself healthy for these kiddos!), and everything looked fine.  Yeah!

On Wednesday Madi saw Dr. Condie, our neurologist.  We talked about her last seizure (she hasn't had one since the one a few months back) and racked our brains trying to figure out if there was anything concrete that could be the cause.  There didn't seem to be any reason, other than she did go through a growth spurt, meaning her dosage might have just been a little low for her.  We are keeping her dosage of Kepra the same, but will adjust it again when she gains weight again.  It was a pretty boring appointment, just like we love!

On Thursday we headed back down to CRS so that Madi could get evaluated by the physical therapist there.  We already have an amazing physical therapist, and are not looking to switch, but we are still fighting insurance to get Madi a medium Rifton Dynamic Stander, and CRS thought this may help.  The PT agreed Madi needs a bigger stander, agrees that it's beneficial for her and could tell she uses it often, and is working on submitting a letter for us with the verbiage they are looking for.  We've been appealing and have not been getting anywhere, so hopefully this does the trick!!

In other news, I got a letter this week stating that Ramya was approved for the department of developmental disabilities (DDD), meaning she will now get a secondary insurance through the state.  YEAH!!!!  This will pick up the out-of-pocket money we spend on therapy every week for her.  It also means I can FINALLY coordinate their appointments.  I had the girls seeing the same specialists, but because Ramya didn't have the secondary, she couldn't go to CRS, meaning she saw them out of their office, and Madi saw them out of CRS, and none could be coordinated.  So awesome that we can coordinate now!!! 

I think that's about all the updates we have for now.  Tomorrow we head to see Dr. Goggins, our orthopedic surgeon, out of Cardon Children's Hospital for Ramya's appointment, so I will update on that appointment soon. 

Have a blessed week!

Thursday, June 19, 2014

Modifying a Radio Flyer Cyclone for Children With Special Needs

I'm excited to write this post because this is by far the EASIEST modification we have ever had to do!!

I saw the Radio Flyer Cyclone and knew my girls would love it. 

 




We do not give the kids birthday gifts on their birthdays, since they get so much from everyone else, and instead wait until the summer to celebrate an "un-birthday" with all the kids at once.  Since the girls summer un-birthdays were just around the corner, I wanted to get them a cyclone.  I knew Madi's legs wouldn't stay on, though, and likely Ramya's legs as well.  I wasn't sure how to go about modifying but had heard a rumor that you could call Radio Flyer and they would send you a foot plate.

I called Radio Flyer and talked with a manager.  I was told that a mom had called up Radio Flyer looking for a way for her child to use the Cyclone.  Radio Flyer decided to create something for her, as well as others who were needing a modification (This goes to show you.... always ask!  You may not only help your child, but may also be paving the way for other children as well!).  Not only will they send you the plate to make it accessible, they send it completely FREE!  All you have to do is ask and sign a waiver saying you will not hold them responsible if something happens.  It's so easy!  The make each plate as it is ordered.  Our plates arrived within about a week and a half after calling and requesting it, and were very easy to put on.  They are made out of a type of strong clear plastic and Velcro, and work perfectly!  I love that Radio Flyer did this for their customers, and will definitely be buying their products again!

Here are some photos of our modified Radio Flyer Cyclones. 


 
It came with very easy-to-follow instructions, as well as all the tools needed for install.

 
Here's what the plate itself looks like...

 
You can see the clear plate attached under the wedge shaped piece in the middle....

 
Did someone say bubble wrap?!?!?!?  It always brings them running!
 

 
 
Madi needed a few extra straps to keep her legs in enough that they didn't hit the wheels and handles.  It was an easy fix and works well.  She LOVED it and didn't want to get off!

 
Conner had to try too, of course.



The plate works perfectly for Ramya, as her legs can just lay out flat without slipping.  After seeing the Cyclone put together, I knew her legs wouldn't have stayed on without the extra leg plate. 
 

 
A few photobombs...
 
 
 
And a quick little video of Madi trying it for the first time.  She's gotten the hang of it a little better now, so I'll try to get an updated video...
 
video