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.

Boy its been a long week

We've been in Montreal since last Saturday. Out of the 7 days we've been here we have seen 4 major accidents. When I say major accident I mean, cars crushed, people being put on stretchers in an ambulance. WTF?? You people need to learn how to drive! People here drive absolutely crazy. You have the people who are actually following the posted speed limit (which is ridiculously slow) or you have the people who think its the frickin' autobahn. All posted traffic signals and signs are obviously only suggested to the drivers as most weren't follow them as the rule. I think when I get back home I'll be at the doctors for meds to treat an ulcer. For future reference 2008 Ford Escapes do not come equipped with the standard "OH $HIT!" handle as did our previous vehicle.

Another oddity that we experienced in Montreal, when you go out to eat at a sit down restaurant, and you order a soda, you get a glass and a can of pop. Or sometimes you just get the can of pop with a straw stuck in there! Just struck me as odd. I'm still flabbergasted by how crowded the Wal-Mart was. I don't think I've ever seen so many people at one time in a Wal-Mart, and there is just a ton of crap shoved in there, the aisles are super thin...just a trip, you'd definitely have to be in the right frame of mind to go shopping. There are NO
7-11's here either. To drive 2 miles you have to drive for 15 minutes on 20 different roads driving at 100km per hour and on the same road some are driving 40 km. Frickin' scarier that chit~ Thank Gosh Lonnie was driving, cause I would have had to have someone come pick me up and drive me home because I'd be too scared.

OK - ABR. Wow, a lot of information to process, a lot of details, a lot of wonderful kids and parents too. It was so nice to sit and talk with parents and not have to worry if someone was staring at your kid, I wasn't sitting on the edge of my seat ready to attack anyone who was staring. And if they were staring, it was because they were like, "hey he moves just like my kid", or "Wow he's got good head control". No one is looking at your kid with a nasty look, or anything. Everyone talks, enjoys themselves and is able to be around other people who have children with medical issues. Besides being at ABR to learn the techniques, and the reason for ABR, it is an awesome place to swap stories, and learn of new things we didn't know about. I am still in awe about how cool some of these people are.

So we picked the nearest location to us for the satellite location which we will be going to next. Being that this is our first year with ABR, we are required to attend Montreal and 4 satellite locations throughout the year to make sure our technique is correct, to get new exercises and be trained in them, and for the trainers to review Daniel's progress.
Here is our schedule for our first year of ABR

Chicago - Feb 19-22
Montreal - May 6-10
Chicago - August 1-4
Chicago - November 6-9

This means tons of saving money and being creative with finances! Tons of research for cheap hotels, driving, flying or train....bus. Planes, trains and automobiles! I am interested to see, the differences that will be with Daniel at each session. Most will probably not be able to be seen by us because we are with Daniel each day and won't notice the subtle differences, but with the hundreds of photos that they took and they will take again...they will be able to tell. The minimum hours per day will be 3. An hour on each exercise. Anterior thorax, anterior neck, jaw/larynx. Those exercises will be etched in my brain forever I think! They also showed us a simple exercise that will help with constipation, and another one for reflux. We shall see how those work. Daniel was such a trooper through the whole thing. He was just awesome.

Got to get to bed, we're leaving early tomorrow morning for home!! And along the way we're goingto figure out how we're going to manage the 3 hours a day of additional therapy! All this of course for a very good cause!

Fletcher, Daniel and Nathan (3 tired little boys!)
Angus and his mom

Gavin, Leonid, Christina

Melanie, Daniel, Jessica, Paxson, Robert

Melanie, Daniel, Katy, Charlie, Kelly & John

Montreal ABR Fall 2008 Session

On Your Mark, Get Set, ABR

So, a bad start to the day, get into the car and the GPS system that we relied on to get to Montreal, Canada is NOT finding the map/directions to the ABR site. Now, I know many of you are probably thinking "why didn't you check for that before?" Well we did, last night and today....nothing! FREAKIN' OUT!! ABR starts in 45 minutes and it takes 25 minutes to get there WHEN you have directions and the GPS telling you "turn left, start in the far left lane..." zilch, nada, nothing coming up. Almost ready to throw the darn thing out the window and drive over it. Shake it a couple times and jiggle the cord to the power.....voila', we have directions, Lonnie and I apologize to each other for the screaming match because we were both panicking, and that's just what we both do when were stressed. YELL!

The day continues on.....with a much better flow! Its funny I was nervous this morning, not just about ABR but also meeting the moms of the kids whose blogs I've been reading!! And all the kids are super cute in person too!! We first ran into Katy (Charlie's mom) and her parents. It was very nice meeting them, for the brief amount of time we talked. Lonnie enjoyed talking to Katy's dad also (of course about sports!). Then as we sat in the little room with a ton of people, as they walked in, I'd lean over to Lonnie, "I bet that is Paxson down there, and that little boy over there is Tyse, ooooh and I bet that one there is Fletcher.....and there is Nathan!" No I am not some cyber nut case, I just know who these people are because they have exceptionally cute kids! :) It was funny I'd say "ooh that must be Fletcher" and Lonnie would say "I can't remember the kids names, what is the name of their blog" and I'd tell him and he'd be , oh ok.......now I know what you're talkin' about!

I didn't get to talk to everyone and I'm sure there are people there that I have written back and forth through email or on the yahoo ABR support group, but just didn't figure out who they were in the over crowded little room. I am bummed that we left right after the presentation pretty much, but Lonnie had a banger of a headache from lack of proper foodage this morning! Daniel was ready for a nap, so off we dashed. So, hopefully no one thinks we are rude. (Like many of the people we have encountered here...natives) I also wanted to get some photos of the group we know, but there were tons of people in a small place and at the end of the presentation I think everyone was just ready to stretch their legs and go feed their babies as Jennifer can relate too! Also spoke with Todd a bit when we were out in the hall way quieting children. He was joking about us wives bring the computers along to "blog". Yes, we brought ours too (or else I wouldn't be able to post!) but Lonnie gets on it faster than me to check his fantasy sports! So, woman blog and guys play fantasy sports....seems like an even deal! ;)

Now to the ABR presentation. Gavin (one of the guys who will be doing Daniel's evaluation) gave the presentation. I think Daniel started to freak out (I wonder who he takes after?) when they turned the lights down. So most of the time one of us was standing over on the side holding Daniel to calm him. Then they started demonstrating with the skeleton and that sent him into his boo-boo lip huffin' and puffin'.

To sum up what ABR is, from what we took away from the meeting. ABR is fixing the smooth muscles and the body structure. The idea is to fix the foundation of the body structure and focus on that. Forget about trying to fix the brain which is not the source of the problem. That might be the initial source of what caused the CP, but you can't fix the problem (the injury) you focus on the smooth muscle, whereas traditional therapies focus on the skeletal muscles. Gavin explains it much better! LOL. I understand the concept, just don't ask me to teach about it! ;)

Basically, we will not see Daniel walk or sit up until we correct his foundation, and to correct his foundation we must start with the smooth muscles and when we strengthen those, we will see a stronger Daniel structurally. I am geeked and so happy to be here. I can't wait (nervous, hesitant and excited) to have the two evaluations with Gavin and Leonid. Excited because then we can really start ABR, hesitant because I always get nervous when someone new meets Daniel and is giving their opinion of where Daniel falls in the "scale" of severity of CP, and their expectations or lack of expectations for Daniel. I don't like when people put limitations on Daniel, or I feel that they do. No one from ABR has done this, but this is just what I am use to.

Ok, off to find something to eat where I can actually read the menu and know exactly what I am eating. Last night Lonnie orders loaded fries.....which are not the cheese, bacon and fries that we know. These came with fresh mozzarella chunks, I believe corn beef pieces and some brown type gravy over the top. Yikes....that was scary! I'm looking for something safe like a salad....can't mess that one up!

Holy crow.....here is a warning to anyone who is not use to Wal-Mart in Laval....what the heck, it was packed. I have NEVER seen a store (let alone Wal-Mart) so crowded. Now if you were to have told me that they were giving away $200 free to every customer I might be able to understand, or if it was Dec. 24th, I could understand. But it is frickin' sunday afternoon WTH??!?! And people, stop and check yourselves, you are being rude and crappy over stuff at WAL-MART. Relax will ya!?!?! EH? Oui'?

WE MADE IT!!!

We are in Montreal. YIPEEEEEEE YAHOOOOOOO YEAAAAAAAAAAAA!!

Took us 11 hours to drive here but it will be worth it I am sure.
Now, we just have to find a store and buy the socks, the baby food and a toy because I forgot to pack all of it!! DUH!

We will post more later and let you know how it goes.
The drive was very pretty, all the trees changing and such.
The speed limit in Canada is ridiculously slow, and I got tired of listening to Lonnie mimic the Canadian accent eh?!?

UPDATE: Did you know that everything in Laval closes (including the mall across the street,and the grocery store down the street at sometime before 6:00 p.m. on Saturdays? What the heck? its like a ghost town here! AND I was so excited to be able to get Daniel into the pool all week. NOT GOING TO HAPPEN...the pool is closed down for renovations. WTH!!! they could have told us that before we booked the room!

How Sweet...

Just needed to say really quick, how sweet people can be.
It is very heart warming considering how many people who aren't (and I always run into these people on a daily basis.)
So when someone does something really cool and sweet. When someone takes the time to help someone else out because they want to not because they are going to benefit someway. I just like to take note of it.

1. Dawn M. Dawn follows Daniel's blog from Canada. She saw from posts that we will be going there in just a couple weeks. (YEA!!!!!!!) And she took the time to send me an email offering for us to stop by and visit on the way to Montreal. She also has a friend that she sent an email to that lives in Montreal to ask questions about hotels and such. Just to help us out, to make sure we were getting in somewhere that was decent, gave us some pointers on what roads to travel and which ones we should watch out for. That driving in Montreal is hectic, and that there are different driving laws there than in the States. (This is helpful because I am certain that we would get a ticket....it just happens that way!)
2. Andrew B. This guy doesn't know us at all, in fact never even heard of us until Dawn sent him the email. He rocks! He actually looked up some information about ABR called to confirm with them that the therapy was done at the same location as listed, and gave us some detailed information of what we can do in our "off time"that is relatively cheap or better yet FREE! He even gave his phone # and email address so when we are there if we need any help. How cool is that???
3. Joe, Carla & J.S. McNamara - This group of people gave us a nice surprise. We got a nice check in the mail to help. It was such perfect timing. They sponsored a "Jeans Day", so when you wear jeans you pay "x" amount and it goes to a certain cause. Joe (otherwise known as Big Joe!) suggested Daniel, Carla said A-OK, sent us a check and the people at J.S. McNamara are wearing nice comfy jeans to work!!! Everyone is happy!! Especially us!Like I said perfect timing for the trip to Montreal.
4. Uncle Marty (Chic) - With all the stuff Marty has on his plate these days, he still calls Lonnie with ideas on how we can raise funds for us to continue Daniel's ABR therapy for the year. It is greatly appreciated.

I cannot wait to start ABR. As I've said before, I just think its that extra little piece we need to add into Daniel's routine. It will be time consuming, and it will be expensive for the next year. But Lonnie and I are committed to giving this our all for the next year to see what progress Daniel will make. One year, and if it doesn't work for Daniel then we are only out one year and a good chunk of money, but then we can say "at least we tried". I would hate to have something out there that we didn't' try because we just couldn't get the funds together. And what if that was the little thing that he needed??!

So for the next year, we are going to fight tooth and nail, save everything we can, give up many of the things that aren't really necessary, and give Daniel his shot. I hope you will keep coming back and checking on Daniel. We will be giving progress reports along the way.

Just cross your fingers, say a little prayer, throw salt over your shoulder, whatever it is you might do to create good luck, good vibes, positive energies....please do it for Daniel.

Countdown: 13 days

What was I saying???

Today after I dropped Daniel off to school, I began the telephone calls that needed to be made.

The phone was ringing, I was sitting at my desk with the planner open and papers spewed all around me, and emails flying open on the computer. I kind of zoned out, and heard the person on the other end saying 'Hello? Hello?'. Me - "Oh sorry, hello" and then everything was gone. I couldn't remember who the heck I was calling. Crap, was it the orthopedic doctor, the ABR place (nope this person didn't have an accent!), insurance, or scheduling department for an EEG??
Nothing like feeling like a fool first thing in the morning!
Me- "Sorry its been a long day...what number did I just dial?"
Person on the other end- "It's only 9 a.m.....and it's already a long day!"
Me-"Welcome to my world!"

Turns out, I miss dialed and it wasn't anyone I needed to talk to. But she was awfully nice so I should have suspected something right off the bat!!! The people I generally have to talk to are not to receptive at any time of the day!

That is how my day seemed to continue on. I have so many things I have to get done and organized that I am so scatter brained its not fair!

Ever sit and wonder if you're losing your mind? I do. But then I think well if I'm really losing my mind, would I really be aware of it? If I could understand that things weren't processing correctly , then technically I'd be considered rational...so if you think you're going bonkers you really aren't because you're thinking about it right?? LOL.

OK so no medical terms here but I'm feeling a few cards short of a full deck. I can't get organized, I HATE NOT BEING ORGANIZED. I can't stand not knowing what is going on, where everything is, and what I should be doing.

I have all these plans for what I should be doing to keep the house going right and not messy, what I should be doing with Daniel. When Daniel is at school what I should be doing and then when I look back I think why wasn't I doing project B instead of what I had done and then I get all ticked off at myself. When I am not organized and feeling in control I get completely and totally bummed out and depressed.....and I feel like I'm losing my mind! I wish I knew how to be organized and keep things going smoothly. I really really wish!

Now ask my hubby and he thinks I'm the most anal person around, that I'm a neat freak, that I always have to be in control, that I need to take a "chill pill" (I so hate that term!) If he tells me to "relax" one more time....I'll drop kick him across the room.
Where the heck does all the time go and how the heck am I suppose to get all of this stuff done?
Can anyone help??? Why does it seem like I am the only person struggling with keeping it all together? I so want to be that "SuperMom" person that I hear about and strive to be.

Uugh anyways, life at my house.....what was I saying??

Oh yeah......18 days, 3 hours, 57 minutes and 12 seconds until we start ABR!!!!

Advanced Bio-Mechanical Rehabilitation (ABR)

We have been talking about alternative therapies for the past couple of months. Well we have decided as I have probably said before that we are going to go to Montreal in October for a week. This will include the evaluation by Mr. Leonid Blyum.
There is no turning back, the deposit has been sent in.....if we don't go we lose a lot of money because it is non-refundable.

I am very very excited about this but extremely nervous too. I think I pretty much know the stuff about Daniel, but I always get a knot in my stomach. What if he looks at Daniel and says he can't be helped? UGH! I don't think he will, but there is always the chance. ANOTHER ONE OF MY FLAWS....I am told I always think the worst! But really what it is is I like to prepare myself for the "what if's". I always worry about things that haven't' happened yet. I suffer from the "what if" syndrome!

Some other parents that we know in the cyber world are also going to be attending at the same time. I am also excited to meet them and the children that I feel we already know! The ones that I know are going for sure are located at the following blogs. (if you're not listed and you're going please let me know and I would love to add you to the blogroll)

Erin & Fletcher
Marcela & Nathan
Jennifer & Tyse (care page name: Tyse)
Katy & Charlie
Susan & Noah
Jessica & Paxson
Eugenia & Matthew

Successfully doing ABR and seeing great results: Jacqui & Moo
She has helped me so much with answering all my questions! Thanks a ton Jacqui!

I am sure come the end of October we will all be posting about how ABR is going and what are likes and dislikes are. And of course give it a little while and I am sure we will be posting of our success in helping our children get stronger.

From the ABR site, it states:

ABR biomechanical reconstruction of the musculoskeletal system follows the path of normal motor development - starting from the neck and trunk and later descending to the periphery (arms and legs).

ABR provides planned progress of the musculoskeletal structure and function through predictable stages. Results are predicted in numbers of hours of exercises done and changes in the alignment, mobility, size, tone and strength of the child's body – specifically in the chest, abdomen and the pelvis.

These are the exact areas that Daniel needs help in. His trunk is his main issue. When he had the infantile spasms when he was younger he lost his ability to hold his head up. Since then with many many hours of PT, he is now able to hold his head up. There is still weakness, and his neck tires easily but it is notable better than it was. This will be one of the first areas that we work on and I can't wait to see results. His trunk...gosh once his trunk gets stronger I just feel it, everything will click together. It will be like someone flipped a switch and he'll be able to walk. Yes I am sure he will always need a walker of some sort, posture, or walking canes...whatever it may be. He will be able to explore so much more. He will have so many more opportunities. I cannot wait. And if he isn't able to walk ever...at least it will strengthen his trunk and his arms will be able to work better, he will be able to sit up longer, which will give him another world of opportunities.

Needless to say, we are very excited about the whole adventure. We are so thankful that we are given the chance to get Daniel involved in this. Words cannot express......