Looks Who’s Driving Now!

Google Alerts

In my post about buying used equipment, I forgot to mention something that helped me keep an eye on used equipment.

http://www.google.com/alerts

I created alerts for the equipment I was looking for, and then Google would email me every day when things came up.

Here’s an example:

site:craigslist.org pony gait trainer

I typed that into Google alerts, and then it would send you an email with any results from that site using those keywords. In this case, here is the result:


http://kansascity.craigslist.org/for/2354187033.html
(great deal by the way if anybody is looking for a Pony gait trainer).

You don’t have to limit the query to craigslist, you can enter simply the keywords and Google will send you any results it finds.

Just thought I’d share this last tip for people searching for special needs equipment!

On Special Needs Equipment

There were a few comments, here and on message groups, regarding my post on special needs equipment, so I thought I’d write a separate post to address those comments.

On FUNDING

The vast majority of equipment that I show listed here was purchased either with funding from insurance, state programs, or I purchased them used.

The walkers and wheelchair I purchased with primary funding from insurance, and secondary funding from state programs. A few things I purchased with independent grants that I applied for (found by researching on Google). One was the Challenged America grant, through which we purchased the stander used, and a couple were private grants. The Chill Out Chair and Discovery Tricycle we bought at about half-price at an Abilites Expo (the demo models) with funds from our tax refund for last year. Most of the rest of the stuff I found used at AWESOME prices (more on this later).

Getting everything paid for was NOT easy. For almost every single one, I had to collect many letters, get tons of documentation, appeal, get help from lawyers, etc. For example, both the HART walker and the Kidwalk were quite an endeavor. We got denied by our insurance, medicaid, and CCS. So I got a pro-bono lawyer involved through the Office of Clients Right, and requested funding through regional center, the payer of last resource. It took MONTHS and lots of letters and going back and forth, but eventually, we succeeded in getting them funded. Most of the times, I researched and wrote the letters myself, then took them to the doctors or therapists, had them read, review, and sign them. That way I knew I was getting exactly what I needed. I bought a massive file cabinet and put EVERYTHING away in very organized folders, as in the battle for funding, documentation and having copies of everything and using them for supportive evidence was ESSENTIAL. I always keep a list of every thing I’m working on, and every week, I check my list to see what is going on so I can make sure to keep moving everything forward.

On Purchasing USED equipment

Most of Nathan’s equipment was purchased used through various sources. My favorite is craigslist.

For example, this is how we got Nathan’s Dynavox. We tried getting it funded but kept getting denied. I realized that until I could prove that Nathan was proficient at using the device, I was going to have a very difficult time getting it funded. So I started looking for a used Dynavox. I figured that if we made the initial investment, we could get him proficient in it, then prove to all of the funding sources that he CAN use it. Now my plan is to sell the old one to recoup our investment, and get a new one through insurance.

I used the following query in Google:

site:craigslist.org Dynavox Vmax

This searches ALL of the craigslist all over the country (not just my local LA one) for a specific keyword. This way I started contacting people all over the country. I found many, but often by the time I contacted them they were already sold, or they were too expensive. Finally, I found one at at incredible price. It had been owned by a gentleman who had ALS, and passed away. His wife wanted it to go to someone who could really benefit from it. So we got and INCREDIBLE price on it. Then I started looking for the Eyemax. A couple of months later, we were fortunate to be contacted by Nathan’s wonderful SLP who informed us that one of her clients was selling theirs! Once again we got a great price for it. We’ve bought a TON of our kid’s stuff used this way, for example, Isabelle’s stroller we bought for about 1/8 of the regular price through a wonderful lady in Atlanta that we found on Craigslist.

Other places where you can find used equipment are:

Special Child Equipment Exchange

Rehab Equipment Exchange

AT XCHANGE

Of course, there’s also EBAY, but I have never purchased any equipment from Ebay as I typically find the prices to be too high.

Finally, you may want to do searches in your local area. Your local UCP or Easter Seals may have equipment exchanges or swap meets. I recently found this one:

Orange County UCP Swap Meet

The key with this is to keep a close eye on all possible sources and wait until what you need is available at a decent price. I think people often try to sell their equipment for more than it is worth, so I watch and wait until I find them at a price that I believe is fair.

On Gait Trainers

In my equipment post I mentioned that Nathan has 4 different gait trainers: The Kidwalk, Hart Walker, Pony Gait Trainer, and the LiteGait. Here’s what we’ve found with each of them:

- The Kidwalk: Although it is an AWESOME piece of equipment, it hasn’t worked well for Nathan. Nathan has very high muscle tone in his adductors, which make his legs scissor at his knees. When he tries to walk, he ends up crossing his legs and feet, and getting stuck. Therefore the Kidwalk wasn’t very good for him because he’d take a step or two then get his legs and feet all tangled up, making it a very frustrating experience for him. They have some straps and a special seat available for kids who have this problem, we tried them all, but unfortunately, Nathan’s scissoring was stronger. For a child who does not scissor, I think the kidwalk is AWESOME. After Nathan has his PERCS surgery I am excited to get him back in the Kidwalk, as it has nothing in front of him so he can have better contact with his environment and I think it gives him more mobility options.

- The Pony: This one has worked best for Nathan. It has a divider in the middle which keeps his feet and legs from crossing. You can tilt it forward, which makes it easier for him as the chest support takes some of his weight. It has a “seat” that also takes some of his weight, making weight transfers easier. These 3 features have made it possible for Nathan to cruise in his pony! The problem with the pony is that he doesn’t bear much weight, so it’s not really moving him forward towards independence. However, at this point, I am most interested in mobility and giving him the freedom to go wherever he wants to go!

- The Hart Walker: I fell in love with this walker when I saw it because it is both an orthotic device and a walker. It keeps his body in perfect alignment when moving. Unfortunately, because of Nathan’s tone in his adductors and hamstrings, he simply has never had the strength or capacity to move in the Hart Walker. Each step takes an insurmountable amount of effort, rendering it “not functional”. Also, we can’t tilt him forward in it, so he has to be completely vertical, and since he has such poor head and trunk control, it once again makes it hard for him to move. I’d hoped that with time and practice this would change, but so far we haven’t had much luck. Once again, after his PERCS surgery and once his head and trunk get stonger with Medek we will try him in it again and see if he has better success.

- The LiteGait: This is a lift/walker that is meant to suspend him over a treadmill so he can “practice” walking. We got it when he was very young and I am really grateful as I believe this is what taught him the cross pattern walking pattern. I know for many children it is difficult to take reciprocal steps – Nathan never had this problem, and I believe that is because of the Litegait. As a standalone walker, however, we found that it wasn’t functional. It is way too heavy for Nathan to move it. There is a lift mechanism that weights a lot, so it’s not really very mobile. Also, the wheels are pretty small so it’s not very easy to push along. We use it more as a lift system to suspend him over things, including the whole body vibration system, the IGallop, and when we want him to “stand” along different surfaces to play. I sometimes also use it as a “sitting” aid so he can work on head control while on a seated position, without falling back or to the sides.

On Nathan’s DAFO’s

I think it’s almost a daily occurrence that I read on blogs or message groups about children having problems with their AFO’s. There are a bunch of problems – they kick their feet out, or they give them blisters, or they don’t give enough support, or they’re uncomfortable. We were one of those families when Nathan got his first pair of AFO’s – they were trash that we were NEVER able to use.

Nathan’s new orthotist made this new pair. You can see pictures and read about them here:

Nathan’s AFO’s

The inner boot stabilizes Nathan’s foot, gives him a better fit, and makes the whole thing “work”. I don’t know too much about them, just that they are easy to put on and take off, Nathan can wear them for HOURS without complaining, and we’ve never had problems with them.

If you guys have any more questions, let me know!

Special Needs Equipment

Below is a list of special needs equipment that we have used to help Nathan enjoy life to the max and help him access as much of the world as he possibly can. If you have any questions about any of the equipment listed below, don’t hesitate to leave me a comment!

Dynavox Vmax with Eyemax

Daessy wheelchair mount

Ormessa Bug Stroller Wheelchair

Full Support Swing

(I don’t have a pic of Nathan in it yet, so here’s one from their site:)

Swim Collar LJ-A

Freedom Concepts Chill out Chair

Freedom Concepts Adaptive Tricycle Discovery Series

Prime Engineering Kidwalk

Baby Bjorn Carrier

Pony Gait Trainer

Massage Table for his Home CME Medek program

Active Hands Gloves

Brookstone Massaging Wrap

Recaro ProSport Car Seat

Britax Traveller Plus special needs car seat

Balance platform

Lite Gait and T-zone vibrating platform

Recaro Car Seat and Corner Chair & Tray

Cascade DAFO’s with Insert Boots

Hart Walker

Tri Stander

Baby Jogger City Elite Double Stroller

Merry Muscles Jumper


Grandma’s babies special needs seat

Wingbo Tummy time swing

Theratogs

Childrite special needs bumbo

Swim collar from Danmar

Creepster Crawler

Rifton Bath Chair

Switches

Igallop

Neural Impulse Actuator

I found this today and was incredibly intrigued by it:

http://gear.ocztechnology.com/products/description/OCZ_Neural_Impulse_Actuator/index.html

This is the type of technology that I’ve been waiting to hear more about for people with severe CP and locked-in syndrome. Something that reads their brain waves and translates that into physical actions.

This was created by gamers but I can see its applications for switch users. In fact, maybe this could be how Nathan drives a power chair in the future?

I had a gift card from Amazon so I went ahead and ordered it. It may be too complicated for Nathan, but I figured this was worth at least checking out. If it doesn’t work for him – look out for it as a giveaway on this site! hehe.

Adaptations – Car Seat and Neck Wrap

I heard about the special needs Recaro car seat some time ago from another mom in one of my Yahoo groups. So we asked our DME supplier to bring one over so we could try it out. While we waited for funding, I decided one night to look around for similar car seats from the same brand.

I found this car seat:

Recaro ProSport Combination Harness to Booster Car Seat

It is virtually IDENTICAL to this:

Recaro Special Needs Car Seat

So I decided to order the non-special needs one, which happens to be less than 1/3 of the price. Once we got it, I put the two side by side (I still had the trial one), and lo and behold, they were virtually identical in every way. Perhaps the only difference is that the ProSport one is slightly less cushiony.

Now that we had a perfect car seat that Nathan fit in beautiful, then we had the issue of THE HEAD. Meaning – Nathan’s pervasive lack of head control.

I decided to try one of my favorite adapations:

Brookstone’s Massage Wrap Neck Massager

I love this thing to pieces. We have about 8 of them laying around the house. We use them in all chairs, circumstances, etc. It is soft, gives him front and back support as well as side to side. Plus it’s super comfortable and he enjoys the massage feature.

Whereas before the car was super stressful for me because of the floppy head – I no longer worry about the head at all. In my car I use the Britax special needs car seat with the brookstone neck wrap, and now in Owen’s car we have the Recaro ProSport with the neck wrap.

Trips are now supremely pleasant and we never have to worry about Nathan’s head flopping all over the place. We love both of our car seats and highly recommend them to other families.

Sleep Positioning

This morning, the CEO of Aspen Seating and Nathan’s durable medical equipment rep came by the house to evaluate Nathan for an Aspen custom seating system.

Tom was a pediatric physical therapist before he started his own company so he wanted to evaluate Nathan before moving forward on one of his custom chairs.

After looking at the symmetry of his body and evaluating him in many positions, he said something that thrilled me. He said that Nathan’s body is in GREAT shape given his complexity and that he only sees a tiny bit of assymetry associated with the left hip. He was pleased at how well we’ve taken care of Nathan and commended us on a job well done.

He went on to tell us that as much as he would love to sell us a custom aspen chair – that Nathan doesn’t need it. Nathan would do just fine in a regular wheelchair seating system since his body is in such great shape. I was amazed by his honesty.

He proceeded to ask me about Nathan’s sleeping habits. I explained that Nathan sleeps on his belly because he has an exaggerated startle reflex and he can’t stay asleep on his back because he startles. While on his belly, he brings his legs up towards his stomach creating an assymetrical sleeping position.

He explained to me that sleep is one area that can really affect our kids’ bodies. Since they spend so many hours sleeping, their position while sleeping can correct problems or create problems. He explained that even if we have him in perfect alignment while sitting in a wheelchair, his body could still misalign and develop problems if he is not sleeping properly.

He recommended having him on his back, with his head raised, and a bolster under his knees. He said this will help keep his back straight and would probably even help with his hips.

Proper sitting without proper sleeping alignment was like having only one wing to fly. You need both in order to keep their bodies in good shape.

Nobody had ever talked to me about this so I was very grateful for his experience and honesty.

Nathan sleeps in a tempurpedic mattress but he explained that it’s not enough – he needs something to keep him in proper alignment. So now I have to call around to find something like what he described.

I just wanted to share this because I think it is very useful information for our little ones!

PS. Nathan is feeling much much better. Unfortunately Belle is the one that is REALLY sick and miserable.

Adaptations – Car with Handle

The wonderful Sally gave this to Nathan as a gift when we met her in New York. Nathan LOVES LOVES LOVES his car. It worked well in this chair, but he also plays with it while on his back and while sidelaying. Maybe Sally can post a comment about how to make this adaptation? It was absolutely brilliant and kind and so clever!

[simage=2006,max,n,center,][simage=2005,max,n,center,]

Adaptations – Recaro Swivel Car Seat

[simage=2004,max,n,center,left][simage=2003,max,n,center,left][simage=2002,max,n,center,left]

I really like the way Nathan sits in this car seat, it’s GREAT! His back is straight, he’s upright, well-supported, and he seems very comfortable.

Since it hasn’t been approved by insurance I haven’t put it in the car yet to protect it, so it was available while we were desperately looking for a chair for Nathan’s OT appointment.

We needed a tray so I found the tray for a corner sitter and VOILA, it worked perfectly! I am super excited about this adaptation!

Guess who went skiing today?

[simage=2014,max,n,center,][simage=2007,max,n,center,][simage=2012,max,n,center,][simage=2011,max,n,center,][simage=2010,max,n,center,][simage=2009,max,n,center,][simage=2008,max,n,center,][simage=2013,max,n,center,]

And Belle..well..she was the cheerleader!!!

He had a BLAST BLAST BLAST and will be returning tomorrow for some more skiing!

Adaptations – AFO’s

I often hear parents having issues with their child’s AFO’s.  We have NO problems with Nathan’s AFO’s, so I wanted to share what they look like.  We had a hard time finding shoes to fit that weren’t too big, we finally found a pair at Stride Rites which was only 1 size bigger.  We took the soles out and VOILA!

Nathan doesn’t mind his AFO’s  AT ALL and can wear them for hours and hours without any issues.  Since Nathan isn’t permanently spastic, we only use the AFO’s sporadically and when his feet feel tight.

The reason these are so great is because they have that inner boot.  The inner boot holds on to his foot real tight so he can’t pull out of it.  Then you fit the inner boot into the AFO shell and voila!

[simage=1990,max,n,center,][simage=1987,max,n,center,][simage=1988,max,n,center,][simage=1989,max,n,center,][simage=1991,max,n,center,][simage=1992,max,n,center,][simage=1993,max,n,center,][simage=1994,max,n,center,]

Adaptations – Wheelchair and Car Seat

We are trying out the Thevo Twist wheelchair and the Recaro swivel car seat for Nathan:

So far I really like both of them!

The Thevo Twist is pretty light, the chair comes off the base, it is easy to push, it tilts and reclines, and Nathan looks pretty comfortable in it. He will have TONS of room to grow and I think it looks like an all around good wheelchair!

The Recaro swivel car seat is a nice, well-padded, supportive car seat that also swivels. So instead of trying to get Nathan into the seat while it is facing forward, we swive the seat so it faces us as we try and get him into the car, which makes the process SO MUCH easier.

Now we have to get them funded so wish us luck!

Ipad Apps

Here is a list of apps that we are trialing for Nathan. I will write reviews about them soon.

[[petition-1]]

Geeking out

I’m updating from nathan’s iPad. I’ve been geeking out! I realized you can downdload and watch movies on the iPad. This is great for Nathan! Once he learns how to navigate the Ipad, it means he will be able to select directly what he wants to watch!

So after paying for a movie through iTunes I wondered if I could upload my own movies. So I looked online and found software that turns dvd’s into mp4′s that can be uploaded to the iPad! So we can store lots of movies right into the ipad – and the battery life is better than any DVD player out there – 10 hours. Also, no more – “oh no I forgot the movies” – as they are all digital and stored right on the ipad.

Nathan is really loving the ipad. He has colored with his hands. He has played the piano. He laughed looking at flash cards and listening to the sounds of animals. He has read disney books (shrek and toy story). He blitzed through Wheels on the Bus. He chose and watched a movie. Each app has a different way of being activated and so far he seems to be able to figure out how to “work” each app.

This thing is great, and as I said before, a whole new world for kids with disabilities. Now I want to start writing apps for Nathan!

A whole new world

Get a playlist! Standalone player Get Ringtones

I work as an internet marketing consultant. I work every chance I have in between therapies and appointments. So when the IPAD came out I figured it was a great investment for me so I can work while at doctor’s appointments, while waiting for Nathan to finish his therapies, etc. Little did I know that I was venturing into A WHOLE NEW WORLD. Not for me. For Nathan.

I’ve had the IPAD for about a week and I LOVE it. It’s great and I have been able to keep up with work while on the move.

And then today I decided to check out some apps for Nathan. I was BLOWN away. There are SO MANY apps that Nathan can use! Some are augmentative communication apps, others are apps for babies, some are educational, others are just recreational. The key is – now Nathan has endless opportunities for play and to learn – that he can CONTROL regardless of all of his motor problems!

I think I am just starting to see the potential. He can choose movies he wants to watch. He can tell me what his needs are using taptotalk or proloquo2go. He can read interactive books – and turn the pages by himself. He can see flash cards of all kinds of things – animals, shapes, musical instruments, etc. He can color with his hands. He can choose what music he wants to listen to.

All of a sudden Nathan not only has a light, portable, easy to use communication system – he also has an entire entertainment mobile entertainment system that does all of the things he enjoys!

Here is an example of some of the apps I installed for Nathan today:

From Random

I only tried out a couple with him, and was AMAZED at how quickly he figured out how to use them!

For this app, he had to touch the middle of the screen to get more letters appear:

And for this one, he had to touch a small arrow in the bottom right hand corner of the screen. He figured that one out real quick, so Mr. Impatience had to keep tapping away!

I will take more videos over the coming days of Nathan playing with the other apps.

I can already envision the possibilities, and I am SO EXCITED about this.

The bad news: I am out of an Ipad. I am already planning on setting it up for him to take to school, he can use it while in therapy, etc etc. Bye bye ipad, I enjoyed you while I had you. But you are going to a far more worthy owner :-)

PS. I am already trying to find some kind of a glove that we can put on him which pulls out his pointer finger and keeps it pointed so he can make more accurate selections.

PPS. I once saw an elbow support system that could be attached to a wheelchair. Such a contraption would give Nathan support and stability of his arm/elbow so he can make choices more accurately with his hand. This, combined with a glove/splint that keeps his pointer finger out, should give him consistent, reliable access. It’s something like this:

I see some more of them here: Mobile arm supports

PPPS. If anybody knows/has seen this arm/elbow support system, please send me the link – I can’t find it!

Active Hands

I wanted to share another adaptation that I am really happy with. I found this through an ad on facebook and decided to check it out. I am really glad!

Even though Nathan keeps his hands fisted, when he wants to hold something, he lets go. This is the dystonia – his brain sends the opposite message of what he wants to do. When he wants to reach out and grab something, his hands curl into tight fists. If we put something in his hands and he wants to hold on, he lets go.

When we put him in the tricycle, this was a problem as his arms would pull tightly back against his body and his hands would let go of the handles.

This is where Active Hands Gloves come into the picture. It takes a few seconds to put on these gloves, and they basically make it so he CAN hold on to stuff for as long as the gloves are on. They work FABULOUSLY. Much better than the ones sold by Freedom Concepts (makers of the tricycle).

It can also be used for lots of other things – holding on to a pen, holding on to drumsticks or other musical instruments, holding on to crayons so he can color…basically, anything that requires holding anything, this facilitates. Even holding a spoon to facilitate self feeding!

I am really happy with this and thought I should pass on this adaptation. Enjoy!

Adaptations & Abilities Expo

The Ability Expo this weekend … TOTAL SUCCESS!

We got there early Saturday morning thinking we would need the entire day…it turns out we didn’t. The expo has a LOT of stuff but I think it’s mostly geared towards adults with disabilities. They had a few things for children but not too much – it seems to be mostly for people who have had accidents or injuries who can talk, sit upright, etc…Not so much for children with severe cerebral palsy. So there wasn’t too much to see that was applicable towards our situation.

But we did accomplish a couple of major goals:

While I was busy scouting around for wheelchairs and/or therapy equipment or devices to help Nathan gain more function, Owen found something entirely different:

Meet the Chill Out Chair

Nathan LOVES his little prince chair. We brought it home with us and he is HAPPY as can be. Finally he has a chair where he is fully supported, his head’s not flopping, where he is entirely and completely comfortable. It was a total SCORE.

From the same company, Freedom Concepts, we also found an adapted tricycle. At first I thought there was no way they’d have something that would just “work” for Nathan – I figured they’d have to custom-make one for him. But we tried him in the triciclye and it WORKED!

I posted this video yesterday but I’ll post it again today:

And here are some pics of him trying it out at home with daddy:

I can’t tell you how happy I am to have something that Nathan can use that is both enjoyable to him and therapeutic! At the moment we have to push him in it, but I have no doubt he will learn to pedal it on his own in due time. My plan is to use this when we go to the mall, when we go to the park, and all sorts of places – so instead of sitting in a wheelchair, he can actually exercise while we’re out and about!

Another SCORE!

We also worked with the VP of Prime Engineering, the makers of the KidWalk. As it turns out, one of the parts on Nathan’s kidwalk was, and always has been, broken – which was making it that much harder for Nathan to move in it. We also didn’t have all the right components for it. He took the kidwalk with him and is going to switch out all of the parts that need switching and really customize it for Nathan, then mail it back to us by the end of the week.

Guess what? Yet another SCORE!

As you can see, these 3 things alone made for a super successful event for us.

A few other things that we learned/figured out at the expo:

* We saw a whole bunch of adapted vans and asked about van conversions. Our conclusion – there’s no way we’re going to tackle this any time soon. I didn’t like the side or rear conversions, as you lose a lot of space in the van. Plus they are VERY expensive! So my plan is to get a little ramp that I can manually attach to the back of our Toyota Sienna to wheel the wheelchair and trike into the car, and then to buy him a car seat that swivels out so he’s easy to load in and out of the car. My hope is that this will work for a few more years.

* The “ideal” wheelchair that I was looking for does not exist. Sunrise Medical was there (makers of the Zippie/Quickie/KidKart) and Convaid was there and a couple of others. What I realized – I really really don’t like any of those chairs and I think I made the right choice the first time with the Ormessa Bug. It’s light, maneuverable, and easy to take when we’re out and about. I’ve decided that, instead of going with something like the Zippie, I’m going to stick to the same style of chair. My three favorites for now are the Kids Fast, the next size up of the Ormesa Bug, or the Chunc 45. Here’s a pic of a little girl in the Chunc 45 . We are seeing Nathan’s DME supplier on Wednesday who will measure/fit him for a wheelchair – then we’ll take the necessary next steps. At the expo I did see some kids in their wheelchairs and saw some on display and at least it convinced me that what I want for Nathan doesn’t exist – lightweight, supportive, easy to transport, fun. So we’ll have to settle for one of the above.

The rest of the expo really wasn’t very interesting, and fortunately we were out of there and on our way home by 2 pm – which allowed us to grab the RV and head to the beach!

And one final adaptation, which is unrelated to the Abilities Expo.

Sue, from Grandma’s Babies, custom-made this chair for Nathan:

It took some tweaking but it’s getting there! What’s cool about it is that I can toss it in the car and take it with us when we are going somewhere just to eat or to chill – so I don’t have to load and unload the wheelchair. We’ve used it to go to the movie theater, to restaurants, and today – at Starbucks. I am also trying to set it up with a tray so I can attach it to any chair at home or at friend’s house and he can sit in it and play.

So we seem to be moving forward with giving Nathan the tools to “access” the world around him. Hooray!!!!

And after the low…

Comes the high :-)

Remember this post, where I was complaining about Nathan not doing anything when I put him on the kidwalk?

Aheeeem.

He’s not strong enough to make it move on his own yet – as he stepped I pushed the walker to go along with his movements. But he was also going uphill and on grass…so maybe soon ???

Thank you to everyone who wrote to give me advice regarding Nathan’s hips – you guys are the best! I really appreciate it! My cool stayed cool and I’m still okay.

Two serendipitous things: Is Nathan proving to me that it’s all about will? Sure seems like it. The moment I start letting him work things out on his own a bit – kaboom – he starts showing me that he CAN do things when he WANTS to.

And the other serendipitous thing: I had been getting a mommy gut feeling that Nathan needed PERCS. That’s why I took him to the orthopedist to begin with. I had called Dr Nuzzo’s office in New Jersey and they wanted me to take some X-rays, so I figured I’d book an appointment with the orthopedist and kill 2 birds with one stone.

Dr. Nuzzo’s PERCS procedure is minimally invasive, the recovery is very fast, and it has the potential to help Nathan significantly. With PERCS, Nathan wouldn’t scissor so much when he tries to walk, his hips wouldn’t pull out so much, and he would generally have more freedom to move.

So after seeing Nathan in the kidwalk today, I was convinced that doing this procedure would be the right move for him. I think once he doesn’t scissor so badly – he will actually be able to walk around in his walker! And wouldn’t that be amazing!

I have no idea how the logistics will work – including how to pay for it – but as usual I will have faith that the universe will provide!

And on that note…I’m going to bed, I am TIRED!

More Merry Muscles

Guess what? I found out today that there is a size 2 Merry Muscles! How very cool is that?

Here’s the link: Merry Muscles for Special Needs

So for all of you who were interested but were worried that it would be too small for their child -worry no more!

We’re sending ours back so we can get the size 2. I can’t wait.

I really really really like this for Nathan. It’s a way for him to be upright, for him to receive vestibular stimulation, to connect movement in his body with movement in space. Plus he enjoys it! We put him in it while watching TV and he’s the happiest camper – and honestly, if he’s gonna watch TV, I’d rather him watch in the merry muscles than sitting on the couch, wheelchair, or in any other position. All in all – a win win situation!

And for those of you wondering how Nathan is doing … this video was taken today, so you can see for yourself what a quick recovery he’s had!!!

Merry Muscles

We finally set up the merry muscles bouncy thingymajigy for Nathan. Thanks uncle Brian for helping set this up!

It was a bit of trial and error to get this to work for Nathan. It has a nice tall back so he can lean back on it and still use it, but his head kept falling off to the side. So I found that black thing which is just one of those weight loss vest type of thingies that women wear and tied it around and that kept his torso centered and his head from falling over. Once we did that, Nathan started playing around with bouncing!

As you can see here, he totally gets the concept. It’s just hard for him to do the movement. But this was literally his first time trying it – he got better a little while into the trial.

I’m SUPER excited about this because I think it will teach Nathan new ways of moving/using his legs. Before he didn’t understand the concept of bending and stretching so it was hard for him to take continuous steps. I think doing this will help him learn how to do this as well as help him to build strength. Wohooo!

Here he is hanging out with his little cousin Daniel. I wonder if this is what it’s going to be like when Belle is here?!!

HuggaBebe

I found this on Brextin’s blog:

HuggaBebe

Oh how I wish I’d had this when Nathan as smaller! I think now he’s too big for it, bummer. But I wanted to share it here because it’s SO COOL!

Encouraging Exploration

I found this article and thought it was very interesting:

Encouraging Exploration

What I have learned about brain development supports this theory, as in the early stages of development children learn through exploration and a good supportive walker gives them this possibility.

Just wanted to share, especially for moms of younger kids – in the article they encourage use of walkers from the age of 1!

A really cool wheelchair

I saw this on one of the Yahoo groups I read:

Chunc Wheelchair

Here are pictures of the little girl in the wheelchair.

It looks really cool!

We love the wingbo!

Here is a better view of the role of the winbo in our house:

I know I know this goes against what the swing is for…but he LOVES it! It’s his favorite way to be on the wingbo!

And the best thing of it all is…. he’s also being therapized! Swinging is GREAT for vestibular stimulation!

We swing him from side to side, we make him go in circles, we push him backwards and forwards, we make him left up to work on head control, we get him to play with toys…

It’s been the BEST addition to our repertoire thus far!

Oh and for all of you observant people…you might’ve seen the big DYNAVOX box in the corner… watch for a few videos and posts about it!

Nathan in his wingbo

We finally setup Nathan’s wingbo swing properly and it is AWESOME! I have to say that it has rapidly become my favorite device.

When we first put him in it yesterday Nathan wasn’t all that happy. He’s a bit whiney as you can see, and just not too happy. But today we figured out how to hang it a bit better and we found ways of making it more comfortable for him – and he really liked it! Tommorrow I promise to post a video of him actually enjoying the swing.

We had him in there today while we read to him, we had him playing with toys, we swung him on his belly and his back..and it’s basically become a “goto” piece of equipment where we can leave him for a while and he’s happy!

Here are some pics and videos:

Wingbo

Well lately I am running out of things to say. Life has settled down considerably so I don’t have much to report. Today was a rough rough day with the Medek exercises. Nathan is outraged that we are doing these at home and didn’t want to cooperate at all. But thanks to the encouragement of Lourdes’ parents and family and of a few wonderful parents, we are pushing forwards. Largely thanks to Mary who is just determined to make this work for Nathan. I had to back away but she worked through his screams. I need a lot of prayer and meditation to get me centered enough to handle it. But I will get there – no doubt about it.

Anyways, I figured I’d use my lack of new things to report to talk about the Wingbo:

http://wingbousa.com/images/image001%5b1%5d.gif

It’s a prone swing. The child lies on their belly and can swing. If they are little it can hang in a sort of little gym type thingie, but if they’re older it can hang from a tree or doorway or something. I love the idea because we could put Nathan on his belly and get him to raise his head to strengthen his back and neck while swinging. We’re working on a little grant to be able to order it so I hope it works out so we can get this for Nathan!

Closure & Warning

I’ve been thinking a lot about closure. About how I need closure to Nathan’s “sick a lot” days. About how I need closure to my earlier “do a lot of everything but not enough of anything” approach. And most importantly, I need closure for the things that happened to Nathan when he was just born.

So let me tell you the story of Nathan’s first six months. Have a seat, get comfortable, this is going to be a long post.

When Nathan was first born, he was perfect. He nursed, he slept, he seemed a very content, wise, happy little soul. For two weeks I thought maybe there was a mistake in the diagnosis because I had a perfect baby.

But on his 14th day of life, the screaming began. And when I say screaming, I mean hysterical, unstoppable, agonizing shrieking. He seemed to be in excruciating pain and there was nothing we could do to stop him from crying. We swaddled, swung, shushed, danced, jiggled, paced. We did everything – nothing worked.

We went to his pediatrician – “oh he must have colic”. We went again – “oh his nights and days are turned around:. We went again – she realized something serious was affecting Nathan and sent us to test his heart, reflux, and an ultrasound of the head. Once she saw the ultrasound and saw that Nathan’s head circumference was growing too rapidly, she sent us to a neurosurgeon.

I remember that day so vividly. It is ingrained in my memory. She told us to pack our bags because Nathan would need emergency shunt surgery.

We went straight to the hospital without packing our bags. When we got to UCLA to see the neurosurgeon, we went to his office. He took one look at Nathan and said, “Oh, he’s okay. No hydrocephalus. Don’t worry, go home, he’s okay. We can do an MRI later. But this child doesn’t have hydrocephalus. Go home, have fun.” That was it. 5 minutes and we were out of there. No medical examination. No review of records. Nothing. Just a quick glimpse, and we were out the door.

So we spent another month and a half with excruciating shrieking agonizing baby. Here are a couple of videos of him during this time:

http://www.prayfornathan.org/video/video-18.php

http://www.prayfornathan.org/video/video-27.php

There was no way to calm him. No way to make him happy. He was always in pain. Believe it or not I uploaded these videos because they were the best we had of this period.

Finally, the pre-scheduled MRI arrived that the doctor requested at the end of September – on Nov 7th. Yes, it took 1.5 months to have an MRI of a child diagnosed with holoprosencephaly and with evidence of hydrocephalus who cryed uncontrollably. Why? Because unless the neurosurgeon requested it done as an emergency, he was just added to a general queu and that’s how long it took. Of course I only learned about this much later.

When the doctor reviewed the MRI, he diagnosed Nathan with hydrocephalus and showed us where the brain stem was compressed. So he scheduled the surgery – 10 days later. Yes, 10 more days of Nathan in agony.

What’s more upsetting – it wasn’t just that Nathan was in agony. It was also that every day, every minute that he didn’t have a shunt, his brain was compressing more and more. Receiving more and more damage.

The white stuff is his brain. The black stuff is the fluid. The thing at the bottom that looks really squished – that’s his brain stem. He could’ve died during that period. The fluid was building and building and damaging cells and neurons and causing him insane pain. All because the doctor couldn’t give enough of his time to my son to examine him thoroughly when he saw him 6 weeks earlier. All because he didn’t value his life or well-being enough to review the medical records.

Finally the doctor placed the shunt, and for the first time in 3 1/2 months we got to see the happy baby that came out of my womb.

Here he is after his first surgery, wondering at a life without agony.

A week after the shunt was placed, Nathan started acting sick. He started crying, running fevers, vomiting. I had read the signs of shunt infection online and took him to the pediatrician. The pediatrician saw the two incisions and sent him straight to the neurosurgeon. Here’s what the incisions looked like:

http://prayfornathan.org/video/video-incision.php

http://www.prayfornathan.org/video/incision-head.php

And you know what the neurosurgeon did when we got there? He met us in the hallway, took a quick peek and said, “Oh he’s fine he’s fine. He’s not infected. He’s fine, go home.” Yes, he sent us home without a proper examination – again.

A couple of days after that, I took him to the UCLA emergency and they admitted him. They gave him antibiotics and then waited for instructions from, guess who, the neurosurgeon. The neurosurgeon had one of his minions evaluate Nathan and they said, “Oh he’s fine he’s fine. Probably gastroenteritis or something like that. He can go home.” They didn’t tap the shunt. If you don’t know anything about shunts, you wouldn’t know that unless the shunt is tapped, you can’t tell if there’s an actual shunt infection or not. The only way to know is if they tap (take out fluid from) the shunt and grow a culture. But since the shunt wasn’t tapped they sent us home.

Nathan was better for a couple of days. Then the crying, vomiting, fevers, etc started again. The trips to the pediatrician started again. The calls to the neurosurgeon started again. Don’t worry, probably just a virus. Finally, December 24th, 2006 and I just knew I had to do something. His pediatrician told me to go to the UCLA ER. “DO NOT LEAVE until they tap that shunt”.

So off we went to the ER. And again we were told, oh don’t worry, he’s fine. At that point, I’d had enough. I told the doctors I would not leave that hospital until the shunt was tapped. I think they saw the roaring tigress in my eyes and finally acquiesed. They admitted Nathan overnight with assurances that there was no way he’d have an infection. That if he had an infection he’d be comatose. And if there was by any chance an infection there’s no chance it’d be bacterial or he’d be dead already.

Guess what? The next day we got the results and yes, Nathan had bacterial meningitis. He could’ve died. It was a miracle he didn’t die. Yes, another miracle. Maybe that was the last of Nathan’s miracle quota? At this point he’d survived 3 attacks on his life. And he wasn’t even 4 months old.

So finally they took him into surgery to remove the infected shunt and placed a temporary shunt. We lived 23 days at the hospital. He couldn’t move from the hospital crib because he had a hole in his skull with a tube coming out of it which was draining the excess fluid. It was 23 days of hell.

A couple of days into it I confronted the neurosurgeon. I wrote down a list of everything that had happened and asked him, “Why? How could you do this to my son?” And he said, “I’m sorry. I should’ve been more careful. I just didn’t expect him to have an infection. I haven’t had a case of a shunt infection in 4 years. I didn’t think Nathan would be the first.” I told him that if I even saw another hint of carelessness with Nathan, he would lose his head. After that he was extremely thorough and cautious.

And you must be wondering, why? Why did I keep going back to him? Why did I continue letting him treat Nathan? It’s the same question I ask myself now. This question haunts me and steals my peace.

The truth is, I just didn’t know any better. Kids with special needs do not come with instruction manuals. You take people who have no medical training or experience and ask them to make decisions for their child. You had bucketloads of fear, stress, sleep deprivation, ignorance – and that’s your typical new parent of a SN child.

Additionally, I had always been told doctors knew best, that I should trust doctors. Even though everything pointed to the contrary, I honestly believed that the neurosurgeon was doing his best and had Nathan’s best interest at heart. My tendency is to believe the best in people. Plus when you are put in a situation where you are ignorant and your life’s child is in someone’s hands – it’s difficult not to trust.

Most importantly, I just didn’t know better. I was new to the journey. I wasn’t a seasoned warrior, just a rookie freshly out to battle. I had been told he was a good doctor, one of the best. How could this doctor fail my son? Was it that in his eyes Nathan’s life was worthless?

So Nathan spent 23 days getting bombarded, and when I say bombarded I mean bombarded, with antibiotics. They were shooting him up with a concoction that could knock out a bull. It was necessary to get rid of the infection, so I don’t fault the infectious disease doctors. It had to be done.

Finally the infection subsided and they internalized the shunt again, and we were able to go home. And after that 3rd surgery I finally got my son back.

At that point, I was just happy to leave that phase of our life behind and to move on with our lives. I knew Nathan had been seriously wronged. But I didn’t want to look back, I wanted to look ahead, to enjoy a happy, pain-free baby.

Fast forward to end of 2008. I started wondering why Nathan wasn’t progressing faster, why he still couldn’t hold up his head, bear weight on his legs, etc. The amount of therapy he was receiving should’ve led to more functional gains. Something wasn’t right. So I started digging, reviewing medical records, journaling, researching online.

And what I found was devastating. I found that the longer hydrocephalus is left untreated, the more permanent damage a person receives. If it had been treated early, the damage would’ve been minimized. But left untreated, the damage was severe and permanent. Same with bacterial meningitis. If treated early, there are no signs of permanent damage. If left untreated for more than a few days, the damage is severe and permanent.

I was floored. Not only is Nathan suffering from damage due to his brain malformation, he’s suffering from damage given to him by this negligent neurosurgeon. I was outraged, devastated, destroyed. How could I have let this happen to my son? How could this doctor do this to him? How could this have happened?

And to top it all off, I then found that Nathan’s body was hardly functional due to the damage from the overuse of antibiotics. The 23 days of antibiotics left him with a leaky gut and candida overgrowth, so nutrients were not reaching his brain. He had a starving brain. On top of the holoprosencephaly. On top of the damage from untreated hydrocephalus. On top of the damage from untreated bacterial meningitis.

All because of one doctor’s negligence.

Needless to say, I started calling lawyers. All of them told me to send them a mountain of paperwork so they could review the case. I spent many many hours getting the medical records, writing a timeline, gathering evidence.

And this week I got a call from the best malpractice lawyer in Southern California. He told me he reviewed the documents. And he was sorry that my son was a victim of medical negligence. But unfortunately, he couldn’t help us.

And why, you may ask? How is this possible when there is an obvious case of medical negligence and malpractice? Even his pediatrician agreed about the neurosurgeon’s malpractice. There was no question at all about it.

And the answer to this question is why I am writing this post. I am writing it as a warning. I am writing it because if you have a child with special needs, you need to know what I am about to say.

The reason no lawyer can take our case is because there is no way to prove that all of the additional damage changed Nathan’s future and quality of life. Since he was brain damaged to begin with, there’s no way to prove that everything he is now suffering isn’t a result of the original malformation.

I was astounded. So you are telling me that the fact that 99% of cases who have untreated hydrocephalus and untreated bacterial meningitis for more than X days leaves permanent brain damage isn’t enough proof?

Apparently not. Because since he was already damaged, it is absolutely impossible to prove that any further damage changed the quality of his life. How can we prove that the lack of head control is due to the damage from bacterial meningitis or from untreated hydrocephalus when it could’ve been caused by the holoprosencephaly? Even if 66% of children with holoprosencephaly can sit unassisted, how can we prove that Nathan doesn’t belong to the other 34%?

So if your child has CP or a malformation or suffered an accident – they are already pre-damaged. If a doctor harms them further, since there is no way to differentiate from the original damage – there is no legal case.

I can’t tell you how much I have cried about this. I can’t tell you how painful it is that the legal system can’t help my son because he had preexisting brain damage. I can’t tell you how vulnerable this makes me feel towards the medical establishment. It means that any doctor can do anything he wants with Nathan knowing there can be no penalty, knowing they will never be accountable for any damage they inflict on my child.

It’s heartbreaking. Because not only does this mean that the legal establishment can’t protect our kids, it also means that this doctor is free to do it again to other children. It means this doctor will suffer no consequences for his actions. And it means Nathan has to live with the results of this doctor’s negligence for the rest of his life. That the legal system can’t help those most vulnerable.

But I write this post to bring closure to this chapter of our lives.

I hope that by sharing this story I will help other parents. I hope that others will learn from our experiences, from our mistakes. And more than anything, and with all my heart, I hope no one has to go through what we went through because of one man’s negligence.

Thank you for reading this story.
With love,
Marcela

PS – Why am I writing this today? Because I have been thinking about trust. Because with Nathan sick, I don’t know who to trust. Can you blame me?

He’s doing a tiny bit better today. But he is still having trouble breathing, keeps getting fevers, and is generally just miserable. Hopefully he’ll get better soon! Looking on the bright side – at least we know it’s not the shunt!

The good thing is – he’s not sick enough not to laugh at Cars!

Standing and playing

Another very cool thing about his walkers – Nathan can now stand up and play with toys. Of course he can also sit and play but I think it’s important for him to experience the world from different angles.

Here are some pictures of him today in therapy and playing with a toy and a book.

His new name: RoboNate. At this rate we are going to have to make him a robotic shell. Oh if only robocop were real. I’m keeping an eye out on advancements in robotics. Maybe in his lifetime?

A fun idea

The guys from the Australian Institute for the Achievement of Human Potential told us lots and lots of intense swinging is important for Nathan. It will help to stimulate his vestibular system, which will improve many things like balance and coordination.

Since it’s now pretty cold and hard to go use a swing outside, we decided – why not have a swing inside?

So we ordered a $20 swing online and bought a chain at Home Depot. My brother in law drilled a hole in an overhang in our therapy room and then hung the swing by some heavy duty chains. The result – Nathan can swing in the middle of the day regardless of the weather and even watch TV while swinging. Can’t beat that :-)

So I thought I would share this idea as it can be great fun for both typical and special needs kids. And it’s one type of therapy that can help them greatly and that they can enjoy!

Here’s Nathan in our swing. As you can see, there’s equipment everywhere in our house. Oh well.

Learning to Walk

It ocurred to me today as I had Nathan in the Kidwalk that typical kids learn to walk by trail and error, they stand, step and fall thousands of time. WIth Nathan it’s different as he doesn’t need balance, but still, I love that I am “teaching him” to walk every time we go out on the kidwalk. It’s an experience I am enjoying and I love watching as he makes connections in his brain. Every day he seems to understand a little bit better how to step.

Today I braved the mall. Yes, I did it. I was scared and nervous but I figured it was time. We got a TON of stares. I can tell that very soon I am going to develop the ability to “insulate” myself. I realized that the only way to get through it is to block out everyone else and focus 100% on Nathan. So whether people stared or not, I didn’t even notice, it was like Nathan and I (and my mom and grandma, they came with me), existed in a bubble with no one else around us. I have a feeling this skill is going to become stronger and very useful as Nathan gets older.

Anyways, today I saw him initiate steps on his own. Before I would have to push it forward to encourage him to move his feet. But today, when he got excited and wanted to go somewhere, he would start stepping!

He’s not yet moving the walker on his own. His muscle tone is so messed up that I have to keep him slightly elevated so it’s easier for him to move his feet, and as a result, he doesn’t have enough surface area on the ground to really move it forward. But what he’s doing is, as he steps, I push the device forward so he’s getting an understanding that if he moves his feet, the device moves. With time I am sure he will be able to do it on his own.

The most important part – he LOVED being in the kidwalk today. I think with every day and every opportunity to practice he is understanding and enjoying the experience better. I think he loves being at peer level with other kids and he’s loving the sense of independence. I don’t know how to explain it, it’s this feeling I get when I see him that he understands that he’s in the position he should be – upright touching the floor, instead of high up in a chair or in a baby carrier or in someone’s arms. Also, he’s starting to realize that he can go when he wants to go. If I see him get excited and start moving his feet, I help himi step forward. Can you imagine the freedom this must give him? In the stroller or baby carrier, he has to go where we want to go when we want to go – he has no freedom to decide. Now he can start having some freedom and deciding where he wants to go and when. How amazing huh?

As for me – I LOVE this device. It’s nice not to have to carry him all the time. It’s nice to be able to plop him in there and know that he is benefitting and developing new skills. I think the wheelchair has become very obsolete in our house. Why take him in the wheelchair when I can take him in the walker? If I don’t want him to practice walking, I can just use the lift mechanism and raise him so he’s feet are not touching the floor. This way I can push him and we can walk quickly. It’s not as easy to push/navigate as a wheelchair, but I think it’s much better for Nathan. I push him for long distances, then lower him so he can practice stepping short distances, like 5 feet to the swing, etc. So instead of wasting time with him sitting in a chair where he’s not gaining anything, he can work on head control, feel like he’s near to the ground, and a myriad other wonderful things.

Finally, here are some videos and pictures so you can see for yourself:

THis is another reason I love the kidwalk. I can push him up to things and have him play with them. This is one of the first times in Nathan’s life that he can “play” with an object. His muscle tone in his arms is so bad that it’s hard for him to move his arms, reach, etc. But in this device he’s well supported so he can lift up his arms and play with things. I’ve been standing him up against toys, plants, anything that is at his level. He seems to really enjoy it.

Here are some other cute pics

The kidwalk goes to Toys’r'us

Well, I did it. I got over my fear and took Nathan in the Kidwalk to Toys’R'Us. I’d been wanting to do it but quite honestly, I was afraid. Afraid of the looks we would get, afraid of how people would react. So far we mostly manage to go unnoticed as Nathan’s wheelchair looks like a baby stroller, and people are used to seeing older children in strollers. Also, people don’t say much when he’s in the ergobaby because again, it’s not uncommon to see children carried in baby carriers. But the Kidwalk is a completely foreign gizmo and obviously screams – disabled! So I wasn’t quite ready to face that until today. I decided to stare fear straight in the eye and yell my mother warrior roar of defiance.

So off we went to Toys’R'us kidwalk and all and guess what… it went well! Nathan didn’t really take any steps in it but it’s okay. We’ll just keep practicing and practicing and eventually he might be able to do it. The more we do things like this, the more he’ll be motivated to learn to move in it.

One older man came up to me and asked me if he was disabled and told me his granddaugher has downs and he has 2 cousins that are disabled. We chatted for a little bit and he was very sweet. Another guy seemed to stare at us for a while but he was VERY friendly and smiley. I think he wanted to say something but in the end, he just smiled at us and made small talk. Some kids stared at Nathan as if he was a martian and I just ignored them. In the future I might say something.

Other than that, I could tell people noticec but no one else said anything or even looked oddly at us. So – mission accomplished!

Nathan loves being upright and I am excited to use the kidwalk more and more. Instead of using a wheelchair I will probably use the kidwalk when we go out. I raise it up so he’s just dangling when I want to move and I just push him from behind, and when I want him to step, I lower him down so his feet touch the ground and try to encourage him to move by pushing the device forward. Sometimes he takes a step or two, sometimes he doesn’t do anything at all.

We are picking up the Hart Walker on Saturday – YAY! – and I will post pictures of that soon. I am thinking he will do better in the Hart Walker as it’ll keep his feet in proper alignment.

In the meantime, here are some cute pictures!

And here is a little video:

Get me out of here!

Well today was not a good day for the Kidwalk:





Tommorrow I hope to report that he was happier in it. Day by day, right :-)