Standing Proud

I am very excited to get a call today from DavisMade.
We have waited many many months to get approval for Daniel to get a stander.

It was rejected many times, but with the persistence of his physical therapist and his doctor, it finally got approved!!

So, in about 3 weeks, Daniel will be standing tall and proud in his own Standing Dani. I can't wait!
Pictures to follow in the coming weeks!


For those that have facebook information can be found here: click
Here is an article about the wonderful products they have and a little boy who was able to get his.

In case anyone is looking for something like this here is some more info:


DavisMade, Inc. 5316 Lapeer Road Burton, MI 48509 (866) 742-0581 / (810) 715-0946 (fax) / davismade@standingdani.com / www.standingdani.com

Dan Davis invented the Standing Dani[R] Wheelstand for his daughter Dani, who was born with cerebral palsy. Prompting from Dani's physical therapist to make more of Dan's "mobile standing contraptions" for use at school led to the development of his idea into the wheelstand it is today. In the late 1980s, Davis left his job at General Motors to work full-time selling his wheelstand. DavisMade, Inc., has been in business since 1985 and currently employs two full-time and two part-time employees.

The Standing Dani Wheelstand is reportedly the only custom manufactured, self-propelled (either manual propulsion or power-drive option) mobile stander. It is durable, portable, and therapeutically beneficial for children with a wide array of diagnoses. The Standing Dani[R] Wheelstand can be used in- or outdoors and comes in a variety of colors. It is appropriate for children 24-64 inches tall who would benefit from weight-bearing through the lower extremities.

Pricing/funding: Contact company. Covered by most insurance companies and other funding sources.

Warranty: 3 years minimum on wheelstand

Delivery: Depends on location

Daniel Von Whoopidoo

Meet Daniel Von Whoopidoo........

How cool does he look?? He is such a big boy, and loves trying new things! He won't use his posture walker, does not want to hold on to it. He wants to walk but not use his walker....at this time, it won't work! So we were trying to get him interested in doing it another way.
This is the first time he has used walking canes. He's learning to balance by reaching forward and making a toy piano play.
Here is Daniel in his Ti-lite manual wheelchair. For those "professionals" who didn't think he'd be able to understand and use his arms to move the wheelchair.......check out where his arms/hands are?!?!!? Daniel Von Whoopidoo!!!

On a bummer note: We should be in Chicago right now for our ABR 1st satellite training. We're not. We are fighting off the seizure monster instead. Bigger creature than I can wrap my arms around. Bigger nightmare than I ever experienced or that I wanted.

So to those who have recently gone to their ABR satellite- Yipee I'm happy for you guys......I hope you have continued success.....now share what you've learned! Come on don't be stingy!!!

Finally, Some Good News

Well, after the horrible week we had last week, its about time for some good news.

A few weeks ago Daniel got his new "big boy" wheelchair. The Ti-Lite. We are getting some adjustment to it to tweak it and get it aligned for Daniel's body, but all I can say is WOW! It is very light weight and he looks like a little boy now. Who took my chubby little baby boy? It's nice that it is so light weight as it makes it so much easier for teaching Daniel to move it on his own. You barely have to move the wheels to make it go.

Also, we found out that we will finally be getting Daniel's augmentative device. We tried a ton of different ones out months and months ago and decided that the one with the most growth potential, and a screen sensitive enough for Daniel's light touch was by PRC. So, by the end of February I should be reporting about how much he will be communicating with us using his own computer. Now we just need to go to some training classes and learn how the whole thing works and all the wonderful things it can do. We are also having the rep for the company add additional voices to the ECO-14 for us. This way Daniel will sound like a little boy should and not a 40 yr old man or a robot!

The other great thing that is happening is we are continuing to get orders in for our party crowns that we have been making. In the past few weeks we have gotten some large orders and I can say that it has helped keep my mind off of the return of the seizures. Also, off of the fact that the medication we are giving him is making him more limp, irritable and tired. It's just his body getting use to it but, needless to say, it still sucks. So, we've got orders around and a couple large ones too! We have even got requests for St. Patrick Day crowns (see link above). We will also be putting them into some local stores and they will be advertised that all proceeds will go towards Daniel's ABR therapy. We even have a custom order for a newborn baby!! Can't wait to make that one! We are very excited to be able to supplement the costs of ABR through hand sewing the hats. I keep saying "we", because since we have gotten so many orders, I have taught Lonnie (yes Lonnie) how to sew!!! Next I'm going to teach Daniel! HA HA HA

Here are a couple pictures from happy customers! Mohammed (orange crown), bought some to celebrate his birthday. He and his friends all participated in a 50k run and celebrated his birthday by wearing the crowns for the complete run. Pretty cool. A very nice guy and we appreciate the order!



So, that is the good news!! And here is what happened to Daniel's male guinea pig when he went and got his nails clipped!! We thought it was humorous. A red bow for Valentines Day.

Not so bad after all....

I decided not to let December get me down.
So we are on the fourth day of the month, and I am attempting to maintain an even keel.
So good things...not holiday related is what I'm writing about.

Lonnie is finally back to work from being sick. And the "sick couch" is now for everyone!

Daniel went to therapy yesterday with Lonnie while I was at home "illin'".
This was very nice because Lonnie got to see how well Daniel does with Ms. Linda & Ms. Carol.

We have gotten three hours of ABR in each day of the month so far,
which is quite an accomplishment if I do say so myself.

Daniel is walking ALL over the house in his Pony walker.
I believe the ABR is doing some good things. He just seems generally stronger. Before last month there was no way Daniel could walk in the rooms with carpet. Now he pushes himself up over the lip between wood flooring and carpet. Granted it isn't as smooth sailing on the carpet but it definitely gives his legs a really good workout!

My niece had her 4th child on the 1st of the month.
So we welcome a new little niece (she now has 4 girls!) She takes after me!

Now for the really cool news.

We will be getting Daniel's new manual wheelchair this month.
Nervous and anxious to get it. We will no longer in the Kimba seating system. The Kimba looks like a high tech stroller. Now he'll have a chair that people hopefully won't stare at him thinking, "Why is a big kid sitting in a baby stroller?". Don't get me wrong I LOVE our Kimba, we just need to make it better for Daniel, and because he is growing up so quickly....

This chair is very cool. And when we were looking for a chair we were looking for something that when he is in it, people see Daniel first and not the chair. The chair is very lightweight (titanium) so it is very easy for him to propel. We will be working on him learning to propel himself. I believe it will weigh about 20 lbs total, and comparing that to the Kimba, much easier. But we have also got the handles on it for us to push him until he does learn to do it himself. This is kind of what it will look like but again with different seating, more support for his trunk and a removable headrest.

I am hoping that everything goes well and we have it by the end of the month. The chair is a Ti-Lite base but he needed just a tad bit more support than the typical seating that comes with the Ti-Lite. But that can always be switched out when he gets stronger in his core with the ABR.
The Ti-Lite is very cool because Daniel will be at the same level as his classmates. I think this is going to be good. Although I am sure we will find some things we don't like about it too. But all in all, I can't wait to get it. And as you can tell....Daniel loves it.

F.U.B.A.R.

The saga of the feeding chair continues. If you can remember correctly, we've had issues with getting Daniel his feeding chair that he needs. He needs this for proper alignment and for safety while eating. Daniel has high potential for aspirating/choking.

So as I stated, we finally got the approval from the insurances after fighting a long 8 month or so fight. We WON! I was very excited. Then the company we are working with, there was a bit of a delay because the person that does the ordering was on vacation, so we needed to wait for him to get back, then it sat there for a little while because he was backed up 2 weeks. It finally got ordered,only to run into another snag. The color we orignally wanted was on back order for 90 days. AARG, forget it, just get me another color as long as it is not pink! Ok new color ordered (blue) and we should have it in 1-2 weeks. Great. NOT!, the rep wouldn't be out in our area until the end of the month. Fine I will drive 60+ miles each way whenever it is in and pick it up. I WANT THE CHAIR! so, yesterday I drive out to pick it up, crating Daniel in his Kimba seating system and bring the spyder base that we have that the feeding chair is suppose to fit onto. Only to sit and wait for 45 minutes to find out that.....OMG, the seat does NOT fit on the base we have and the rep had told us that it would indeed fit on the same base we had. So we did not need to order it. SH*T!

So, you ask where does that leave us? That leaves us with NOTHING. There is a seat that is sitting at the company who ordered it that is specifically made and measured to Daniel, that we can't use because there is nothing to hook it too! That was my day, to drive all the way there and turn around WITHOUT our feeding chair. Back to Daniel sitting in a crappy a$$ seat to eat. I am so disappointed. I am so tired of fighting this type of stuff on a daily bases. It just sucks. Nothing comes easily.

I take that back. Kisses from Daniel come easily, and that is all I need right now! If you'll excuse me, I'm going to get a few!

UPDATE: We currently have our feeding chair and I love it, so does Daniel. We do not have a base for it that is ours. We have one on loan until insurance gives approval to get one. And what if they don't give approval?? Well someone is going to be buying us one and its not US!

Oh I wish, I wish, I wish with all my might.....

How can I put this without sounding like I am ungrateful for all that we have?!? I can't, so I will just say I wish we had a money tree in our backyard. I don't know how people do it. I don't understand, how other families are able to provide all these things for their families. Don't get me wrong, we are not living in a cardboard box, or anything like that. But we are also not livin' high on the hog either. We have one job that Lonnie works that pays well. I am by no real other cost savings choice, a stay at home mom. Meaning, I wouldn't want anyone else to raise Daniel, and even if I did decide to go back to work, finding someone who would be able to take him to all his therapies, and doctor appointments, and do all the things I wanted done with him, it would not be beneficial for me to go back to work. Let alone all the guilt that I would have by not being with him. Special needs or not. So we are lucky in that aspect. But it makes it very, very difficult to maintain all that we do have. I am not able to go out and get the newest fashion, we do not go out to dinner a ton (OK MAYBE A FEW TIMES) but its to fast food places! We don't go on vacations, or out to the movies, but we do have basic cable. But there are times when I get so very bummed out because I wish we had the ability to get things that I know Victoria (the one girl still at home) would like to have, and the things that I know that Daniel could really use to help him get farther along. But AI must remember there is a budget and we must stick to it, and save, then decide what is best...but it still sucks. I wish I had a tree in the backyard, or a buried treasure, or a rich uncle, or an angel, or a genie in a bottle, or just good luck and found something cheaply. But as most people who have a special needs child, nothing that can be used with them comes cheap. But instead comes astronomically expensive. We have been able to find things occasionally on Craig's list or eBay, or on the SCE yahoo group for pretty good prices. But sometimes, even those pretty good prices are more than I can afford. Then the depression sets in because I feel like I am failing because I am not getting Daniel everything he needs. UUUGHHHH. I know, I know.......at least he has what he does have and we are blessed by that. But boy oh boy the three things I would love for my fairy godmother to give me is
the Childrite Therapy Chair and yes you're right it looks just like the bumbo chair
but about 5 times more costly. SUCKS
Second would be the litegait generally insurance won't pay for this as it is a luxury. Did you know weight bearing and walking is a luxury?! Me neither, but apparently it is. Now for the third and largest thing, this is for Daniel but also for us as his parents. There is this institute in Pennsylvania that teaches parents how to do different things at home (a type of therapy) to help Daniel reach his true potential. The first course is at the end of September in PA. Which means, traveling by car, staying a week and going to a class for 50 hours. I so badly want to do this. I dream about it, I think about it all the time, I come up with schemes on how we can get the money to go. I know you're thinking, well you already take Daniel to therapies. Yes you are right we do. These therapies are treating Daniel's arms and his legs, his body. This places teaches us to heal his brain, to train his brain. I will get into this more in another post. Different therapies and books I have been reading up on. I read these books and I get so excited because I see that there is more of a chance for Daniel to reach his fullest, but then bummed because I can't get it done now, when his brain at the best stage for learning it. Anyways.......star light star bright the first star I see tonight, I wish I may, I wish I might, Have the wish I wish tonight. Maybe Daniel's birthday fairy will give him these next week for his birthday! :) LOL. yeah right, when monkey's fly!

Mulholland, Rifton, Pony...OH MY!

So our little boy isn't so little anymore and he is outgrowing much of his equipment that we have purchased in the last couple of years. We were attempting to see if there was a different piece of equipment that might work better for Daniel, give him more freedom to get around and interact with family and friends then the walker we have currently - The Pony size 0.

Our first attempt, the Mulholland. While the Mulholland is a neat piece of equipment, we tried Daniel in it and he did OK in it, but .....it just didn't seem to give him the support he needed, and it rolled so well that it sometimes went quicker than his little feet could handle. But he did indeed have fun trying it out. So unfortunately it didn't work well for Daniel, but it seems to be working good for Hannah over on The Younes Blog.

Next we had the Rifton Pacer. Again, another sturdy piece of equipment and gives a lot of support and can be changed to give very little support. We've had this one for a while, but again...I guess I'm kind of picky when it comes to gait trainers...I like for Daniel to be able to get up close to things and grab at items. With the frame built the way it is, Daniel wasn't able to do this too much. It works great outside, and keeps from tipping' if Daniel is half on the sidewalk and half on the grass. Still, when he goes to school in a couple months, I want him to be able to get up close to the work tables, and up close to his friends. Again, don't get me wrong, it did what it needed to do, but I wanted something more streamlined. So we will not be getting the Rifton Pacer in a larger size.

Now...it is with much sadness and reluctance that we have to pass one Daniel's beloved yellow Snugseat Pony Walker. (boo hoo hoo) This walker has been our godsend for the last year. This piece of equipment, is Daniel's legs...he can run, hop and walk. He can pull things out of the pantry, pull open cupboard doors, slide down the ramp to the family room. Because of a resent growth spurt, he is way too tall for it. It isn't doing what it needs to do. So frantically after his therapist said it could no longer be adjusted higher, we began our search. Daniel can't go without a walker, its his Independence. It would be like telling someone who walks that they can no longer walker or move, they could no longer explore their world. We weren't going to let that happen! So, until we get insurance approval (which could take at least 4 months...AT LEAST!) we have located one that we will use until we can get one with insurance. My only complaint about the Pony...the next size only comes in Fushia! Daniel and fushia...just doesn't seem right!

So farewell little yellow Pony...I hope you bring someone else as much joy as you have brought to Daniel and his family.

We haven't tried this one yet, but I would love to be able to try out the Leckey Discovery gait trainer. If anyone has tried this out or knows anything about it please let me know!

Sad, Happy, Sad, Happy....Aw Hell I Don't Know Anymore

We picked up Daniel's 3rd pair of AFO's.
Does this photo make anyone else sad? Besides me?
It makes me sad because

• He's only 2 1/2 yrs old and no child should have to have leg braces...its just not fun.
• Its sad that he has a condition that means he'll probably have these types of braces for a really long,long time
• Just the fact that they started off so small and look how big they are now...means the baby is growing up!
• Just another thing to make him look different than other children his age
• They just represent 'a struggle'

It makes me smile because

• It gives him the strength to stand on his legs and work his muscles. It gives him that extra little umpf to get his walker going.
• They help give him his independence and freedom
• They give me hope, that there is a chance that he WILL walk with his head held high, and he will conquer this struggle, and he will inch his way along. It may be a slow process, but he WILL get there.

Never imagined I could resent an object as much as I do his AFO's and then turn around and love them for other reasons. Oh the emotional roller coaster we live! UP one minute and Down the next. Sad, Happy, Sad.....

Anyone know what to do with used AFO's?

Finally Warmer Weather!

Yesterday we had some warm weather, and we were outside putting up the pool. Daniel wanted to participate also, so he got to make sure the hose worked properly!!!

It was so cool to see Daniel being able to get through the sprinkler by himself. Last year, I made Victoria run through the sprinkler with Daniel and he loved it. (I'll have to dig up the funny picture from last year and post it, we'll get a laugh from it again!) This year, put him in his gait trainer and let him go!! WARNING: THIS PROBABLY ISN'T THE GREATEST FOR THE GAIT TRAINER!!!

But this is Daniel's freedom and I want him to be able to experience these things on his own. He was doing his high pitched excited squealing! Which is really really LOUD! Can't wait til he is able to get in the pool, the neighbors will be wondering what all the noise is about!!

I just love the above picture, he looks so grown up doesn't he? So serious.

Here is my pathetic excuse of making a tent! Remember, I have add 4 girls and Daniel is my first boy......I'm still getting use to doing the boy things....playing with cars & trucks, looking for bugs, making tents, playing in dirt! LOL and you can tell the tent skills are WAY off, and to boot I used a PINK, girly girl sheet!

OOOOH YEAH!! I almost forgot, lets get to the really good stuff. Daniel went to the neurologists last week for his routine check up and his doctor said that we have pretty much done everything he can for Daniel. (I know this probably doesn't read right, but its a good thing!) What he said was that Daniel is doing so well, and he is doing all his therapies and basically has his equipment and is all set. The only thing we need to do is schedule an VEP and an ERG. Then once those are done and his EEG is good that we will start weening Daniel OFF his anti-seizure medication. Everyone do the happy dance with me??!~ I do this with a little hesitation because I'm always afraid to screw with something when things are going good!! But to have him off medicine......that he has been taking for years, is an awesome thought. No side effects, no making it harder for him to pay attention, just a clear clean drug free life!!!

Then in his speech/augmentative therapy, his therapist is training in VitalStim. This is hopefully to improve the muscles in Daniels throat (throat, tongue, cheeks,mouth) and will help with his swallowing. It will also help with speech in the long run. So BONUS!! I had her attack the electrodes to me first before she even touched with Daniel. If its going to hurt him or scare him, I wasn't sure we were going to start it right now. But actually its just a little weird, it starts off really low and it basically feels like a tingle on the skin, then as it is ramping up you kind of feel like there are little ants running on your throat and then all of a sudden you get this sensation and you have to swallow. Hence...swallow therapy. We did this on Daniel and you could see in his eyes when he could start to feel it, but could tell he wasn't uncomfortable. As soon as Daniel put the spoon up to his mouth and put the food into his mouth, she started Daniel's "tickle machine" and you could SEE him swallow, you could hear him "swallow" and after checking his mouth.....everything was gone. Everything was swallowed in ONE swallow. AMAZING!!

Now for the crappy news: We have been trying for the past 9 months to get approval for Daniel to get the Mygo. Well they won't order the Mygo for Daniel until we get prior approval. Our secondary insurance keeps coming back every couple of months saying, well we need this or that and then our Rep sends it in and then you're back in line at the end of the line. You lost your place, and you're at the end of the line. Well this time they came back with what I will have to classify as the stupidest, I mean the utmost stupidest remark that we now have to come back with an answer and wait at the back of the frickin' line again.

Here is the comment: The Mygo feeding system specs that was sent in states that this system is for children ages 4-12, said recipient is only 30 months or so. Please provide information as to why the child would need this. Information must come from doctor that wrote medical need of necessity.

OK, if I were in front of them, I would have a few choice words. It would have started with: are you really that dumb? How about the fact that if you go to the next line, you'll see that the height requirements for this seat are what? there you go......Daniel is tall for his age. He was frickin' FITTED for the seat 9 months ago and we got this seat because the seat that is the next size down does not fit him for his height anymore. And when we started this process he was only an inch away from the Mygo and we knew that by the time you butt munches got around to approving it he would have grown?! Which he did! Hell by the time you get to approving this he will be FOUR frickin' years old!! (he is only 2 1/2 yrs old right now!)

OUTRAGE........I could not believe it. His doctor was equally upset about it and said that he was writing a letter and going to say something along the lines of..."Gee I hope that this child doesn't aspirate (choke) or anything of that nature and that the parents then don't turn around and sue you because of your lack of intelligence in this matter. Daniel has failed a modified swallow and urgently needs this piece of equipment. Currently he sits on his mothers lap to eat because he does not have adequate support which would have been provided had he gotten timely approval for equipment request over 9 months ago!

He was also going to ask that Daniel NOT be put at the end of the line and that immediate review be given. So we shall see where that gets us!

Drivers Training Begins....

Well here it is........FINALLY........the Cadillac of Power Wheelchairs. Here he is cruising around the lobby of the therapy building, showing off his new wheels.
Just can't wait to get going...........'Com on Mom lets go!!!

You want me to go slow???? I laugh in your face!

Isn't he good? He's already checking out over his right shoulder to make sure no one is behind him!

Today was a roller coaster of emotions for me.

Finally Daniel will have the freedom to roam around (and run over) to where ever he wants.

Flip side: I just signed off on purchasing a WHEELCHAIR for my 2 year old son.

This is NOT fair, no one should have to do that.

Is this me giving up? Saying he'll never walk?

NOPE!!

Cause today he also got his Nimbo Reverse Posture Walker.....

and I would love in a year to be able to put a big "FOR SALE" sign on the wheelchair

because Daniel will be walking......but until then.....he might as well enjoy his ride

RIGHT?!?!

New Seat for Daniel

Today we got the delivery of our new Jenx seat. (Click the link if you'd like to find out how this can help Daniel!)

We bought it used from one of the other little boys in our Yahoo Support Group.

He outgrew it, so now Daniel gets it!!! Thank Goodness the parents were parting with it because I don't think we could get any equipment approved right now from insurance as we are still trying to get the Power wheel chair to get approved. If not, I'll let everyone know when we are auctioning off our house and my first born child to pay for it!

Anyhow back to the new seat.

Well we could barely get it out of the box and Daniel was wanting to try it out. He loves new things!

So here are some quick photos before all the adjustments need to be made. I have to find the manual and download it from the Internet but heck that will be easy enough I hope!

So for now, I just leave you a photo of how well he sits up in this seat..........I'm impressed. It was lucky because we were sure it was going to work and for how long, but we will be sue to make certain another special needs family gets it after Daniel outgrows it!

THANK YOU TO THE BUCKLEY'S FROM WASHINGTON!

What Will This Year Bring?

I can dream for miracles right?

I hope this year is uneventful in the drama area....for everyone in my family....so far that isn't happening but I am still holding out for that miracle that our lives can settle down and become "normal".


Things that I KNOW will happen this year

1) Daniel will get his power wheel chair this month.
2) Daniel will have surgery this month
3) Daniel will be getting his communication device this year.
4) We will be going to Disney (Florida) for one week for Daniel's Rainbow Connection Wish.


Things I am HOPING will happen this year

1) Daniel will be able to sit up independently
2) Daniel will be able to walk with his walker more independently
3) That Daniel will remain seizure free
4) Daniel will be off all seizure medication

Here are a couple pictures from this past week.


What it looks like on the way to therapy after the snow storm. Have I told you before I HATE snow? But it does look pretty doesn't it?

Here is a photo of Daniel trying out the DynaVox.

We get to test it out for two weeks, then we will get the Tango. So far I am very impressed with the different things and the growth potential of the DynaVox. If any reader knows about these devices and wants to give me some information on them, it would be greatly appreciated. I would like to know of other peoples experiences with them....good or bad. Or if you know of other devices.....