Friday, October 31, 2008

A Week Off

Daniel during ABR Evaluation with Leonid a little ticked off.

Hello there! Well we have been home for less than a week and we are following the instructions from ABR. They started when we left, to take a couple days off, review the DVD's that were made of Daniel's evaluation by both Gavin and Leonid, and the DVD of the exercises. We are chompin' at the bit to get started. Lonnie started off with doing a 1/2 hour of the anterior throat exercise one night, then yesterday I did it for 1/2 hour. Tonight is Halloween so I am not sure that we'll get that in tonight but I will attempt it today. Daniel is doing really well with it. The only one I am dreading doing is the accordion exercise (both hands) for the jaw/larynx. This one he doesn't seem to like too much but it is suppose to help with the swallowing and define his jawline. We don't have the bench yet, but as soon as it is delivered, we will be going strong on the anterior chest. For the people who know Daniel, his trunk is his main problem. because we are going to our Chicago location in February, we want to be able to see a notable difference when we go. It would be nice if we heard "Hey, cut back on the anterior chest, he's responding too well!" Many of the children that were in our group were smaller than Daniel and the parents were taught the exercise for the chest to be done in their laps. Because Daniel is the jolly green giant and all legs, this is too hard to do. Plus his towel set up that is used on his chest while we are doing the compressions is too large (little kids only have 1 or 2 small towels) Daniel has six. Daniel while mom is doing anterior chest exercise
This week Daniel only attended school on Monday, and I knew that day would be rough because he'd missed a week of school to go to ABR. But even his teacher said he was different. He was just acting like he wasn't feeling all that well. He must have caught a cold this past week, his nose if stuffy and he was throwing up a little one day. UUGH, talk about exorcist vomiting!! Anyways, it has been kind of nice to stay at home and just relax. Let me rephrase that, its not really relaxing because we are still doing things at home, but we don't have to do all the running around and we can move at our own pace, not get up and rush right off the bat.

Yesterday was kinda cool, for the first time ever I was doing this "game" with Daniel and was very proud of how well he did. I would use sign language (ex. the sign for bird) then I would hold up two cards, one with a bird and another with a different picture. When I would do the sign I would just say "Daniel look" and do the sign, then hold up the card and say "what sign did I do?" and he'd scan both pictures and lock his eyes on the one I had done and kick his legs (when he is excited). He got all of them right (with the exception of the frog, but it could be because I held the picture of the frog up with the picture of a piece of cake, and he likes cake!) I was very impressed. Now mind you we don't' really do to much signing with him because he doesn't have the small motor skills to do it with his fingers. BUT we will start to do more. AND it is very cool, considering he watches "Signing Times" a couple times a week! See I told ya all he was a smart cookie!!!

It is nice to have a slight reprieve from Daniel's busy schedule. I don't know of many three year olds that go to preschool 5 days a week for 3 hours, then rush to 6 scheduled therapies through the week, along with 3 hours each day additional of ABR therapy. It is all very overwhelming for me (mom) I can't imagine what it is like for Daniel and he has to go through it all. I am thinking something has to give here soon. I would just like to be able to spend more time one on one with Daniel and "play" and work on the games that we were doing yesterday. I met a mom while at ABR who does homeschooling with her daughter.......homeschooling? uuum maybe I'll research that. But I do love his teacher at school, and I love that he gets the social interaction. But I still feel all of this is too much. Some things to consider....another dilema

Monday, October 27, 2008

A smile is worth a 1000 words

This past week I noticed something and its really been bothering me
I am surprised I hadn't really thought too much about it before, but after being around other children all week it dawned on me.
I was laying in bed in the hotel, while everyone else was asleep (Lonnie and Daniel)
and I thought "wow, Daniel doesn't make much sound at all" compared to the other kids,
and I cried for a long time.

I cried because I will never hear Daniel speak. I might hear a word in his language every once in a blue moon. I will most likely never get to have a conversation with Daniel unless he is using his augmentative device. It's not that he doesn't form words, he doesn't even really babble too much. Some days he will, then it might be days again before he does.

When we are in between babbling days I wonder if he is sad. I wonder if he understands he can't talk. All this wondering makes me feel incredibly sad for him. Will he ever be able to verbalize to a girlfriend that he likes her? Will he ever be able to tell me he is scared and if so what of?

Daniel doesn't make the sounds that a normal child of 3 makes, nor does he make the sounds of a younger child very often. He can do it, I've heard him.

He watches my mouth when I talk, he does try to form the words, but his brain just can't send it to his mouth.

bilateral perisylvian polymicrogyria = SUCKY CRAP! This is what causes Daniel not to be able to speak, and no matter what therapy or how hard I pray or try, will I be able to fix the brain malformation. Why does he have it? Fluke? God playing a mean trick? there will never be an answer, but I will tell you it truly is heartbreaking because I know there is so much in this little boy that needs to be heard. I mean its crappy enough that his body doesn't work for him, but he also doesn't have a voice. How many people in his life are going to just ignore him because he can't be heard? Because they can't understand him. Because they feel he isn't worthy of anything because of his disability?

I get all bummed out about this when its quiet in the house, and then tomorrow will be better because I get to wake up and see this
and I know that I will always hear Daniel, and anyone that has a heart will be able to hear him too without him ever saying a word!

Aahhhhhhhhhhhhh, my own bed

We are home from Montreal and I am so happy. I can sleep in my own bed, with the noise of my fan running. I have a hell of a time sleeping without that noise! The trip was a very good trip, and we learned a lot and took notes, and pictures and got lots of email address to ask questions too.

ABR is a hard concept to try to explain to people. It is confusing and you have to have an open mind. People are just not use to trying alternative things, and all I can say is watch the videos. The videos speak for themselves. Yes it might not be mainstream, and it might sound a bit wacky, or you might think that the theory is way off. And that is fine, you are entitled to your opinion, and I respect that. But please respect our opinions also. If you had a child you would try anything within your reach that you could. And that is EXACTLY what we are doing. If you had a spouse or a loved one that you took care of everyday, you would do the same thing. You would search high and low, you would try absolutely anything to attempt to help them reach their highest goals. We have researched this therapy for a long time, its not something we just jumped into. We do not spend what money we have frivolously, we check things out, and ask many many questions. This was one of the alternatives and the least invasive one, and probably cost wise (because we do the therapy ourselves) one of the cheaper ones.

Also we got home in time to see Victoria off to her homecoming dance on Saturday. That I might add was a long long drive, but well worth it to see how pretty she is....and Daniel was so excited to be home and see everyone again.

Victoria with Zachary (grandson) and Daniel

Brittany and Caitlin - chaperons for the dance
Alexandra and her baby Zachary
Brittany and Daniel
Victoria and her best friend Emerson

Friday, October 24, 2008

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

Thursday, October 23, 2008

Welcome to the World of ABR - Montreal, Fall 2008

Welcome to ABR, come enter our world, forget what you're heard from your typical therapists, doctors, and medical world. Come listen about ABR, we offer no miracles, we offer a lot of hours of work, we offer insight on the anatomy of your child and his failing structure, but what we tell you are things that are fixable that will help your child IF the techniques are done correctly and for the prescribed amount of time.

We are still in Montreal on our 5th day of training. We have had two evaluations, one with Gavin who basically gets you ready and how to be prepared for meeting with Leonid (the founder of ABR). We have learned the 3 basic exercises we will be doing on Daniel. We have trained and practiced on each other, and on the trainer to assure we aren't doing them incorrectly, that we are applying the correct pressure in the correct spot when needed.

Our evaluation was the first one of the day with Leonid, and took approximately 2 hours. The whole process was video taped and also photos were taken (over 800 photos of Daniel's body). I am not exaggerating when I say over 800, it really is. They keep these in Daniel's files and when we come back next to meet with Leonid (6 months) we will see how Daniel measures up to those photos. He explained to us what he sees wrong with Daniel. More than I expected to tell you the truth, and for the first time I wasn't really upset by it. Reason being, they told us, we are telling you things that are wrong with your child's structure, but they are all things that can be fixed without operations, without drugs, without botox. So what is wrong with Daniel can be fixed. No let me correct that so people don't think that I think we can fix Daniel's brain. No we cannot fix the damage that is done to Daniel's brain, but we can fix the damage that the brain has done to Daniel's structure. His structure is collapsing. I know this is hard to understand, and I will be able to explain it more when we get all the videos, and I can show you what I mean. Basically Daniel has a shortened neck, his clavicle, his shoulder blades more as a whole when you move his arm,and they shouldn't. when Daniel is on his back and you lift his leg, his other leg lifts also, he does not separate the two. If you flip Daniel by his arm his whole body follows in a block, everything moves together. When Daniel is placed on his stomach he is incapacitated, his chest compresses under the weight of his body. These are just a few of the things that were said.
Basically, what it comes down to is we must fix the structure before we can expect it to run and move correctly. So like I said in a previous post, we cannot possibly expect Daniel to walk or move his arms correctly, or to sit up when his structure is poor. First we must fix the structure and then the brain will hopefully fix the rest.

I know sounds like a bunch of babbling and hogwash.....but this is what we are doing, and I can almost guarantee you, that we will see differences in Daniel within the next year. The evaluation was not all negative, Leonid did say that Daniel has an excellent frame, and that his skin is good, there are some good things with him (which we already knew). His temperament is going to help us a great deal, he is a trooper and will let us do these exercises (I think he knows we are trying to help him.) I am excited to get started, and can't wait to get home and start logging hours.

Tomorrow is our last day of training. We will review for the last week, ask any questions that we might have, and we will all leave with a new sense of hope. We will do the three exercises that we learned (anterior thorax, anterior neck & jaw/larynx).

Socially, it has been very cool to meet some of the parents of the blogs that I have been following. We have talked as a group or just individually and I have learned allot from them, listening to the things that they are tried, or what they have learned about different things out there. I will be researching more things when I get home. I am positive I will continue to enjoy watching and reading their blogs to see how well their children are doing with the ABR.

I am excited tomorrow is the last day and I can start to get Daniel back on his regular schedule. I can tell you next Monday is going to be hell getting him up for school!! Here are some random photos from the week.

Marcela & Nathan after dessert!!
Richard (trainer from Argentina) doing exercise on Daniel

Todd and Tyse

Erin & Fletcher (Jennifer in the background)

Daddy doing the exercise on Daniel's thorax.

Sunday, October 19, 2008

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 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 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'?

Saturday, October 18, 2008



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!

Friday, October 10, 2008

STRESSIN' AS USUAL - So what's new with you?!!

So last night we got our "contract" in email from ABR Canada. Many mixed feelings here with this subject.
*This could be the thing for Daniel

*It is non evasive
*It can be done while he sleeps

*They focus on the head/trunk first - which is where Daniel needs most of his help
*There are measurable to see if he is improving (in my eyes)
* Just have a gut feeling, that this is going to make him flourish this year

*This might NOT be what is for Daniel

*It is a LOT of money, that we could be potentially pissin' away

*Again, its expensive (my eyes) but i would not forgive myself if we didn't do it and it could help him.

*The ABR machine that isn't necessary but that can double and triple the ABR hours applied has a high monthly rate (like adding a car payment).

To an already stretched budget.
I will just feel really bad if things don't work out and we have used all this money for nothing. But as with any therapy, or different treatment you have to try it right. The thing that sucks is its not like taking a sip test of a drink to see if you like it. It takes months, years to see really good results. It is a huge thing. Can you tell I'm stressing about it. I keep going back and forth. We're going, no we can't its not feasible to go financially. I HATE this feeling. I want to go, I really want to try this for Daniel. Give it a year and see if there is progress. At least 3 hours a day for the next year, might sound like a lot to some people, and really it is, but if it means your child sitting up, or walking......3 hours is nothing. If I didn't do it and he can't sit or walk unassisted, I took that away from him because I couldn't' manage 3 hours of my day?? Come on??

OK so I have to put things in perspective....Daniel potentially being able to walk, or my house being clean?
Daniel being able to control his arms better, or the laundry done?
And if this type of treatment doesn't work........
OK so what then for a year my house is not the cleanest, and no one is wearing clean underwear for a year.........BIG DEAL!!

Daniel is still doing this gagging thing and I don't think its reflux anymore....or if it is then the meds we're giving him aren't working!! Went to the pediatrician yesterday and she is consulting with his ENT and a gastrointestinal doctor to see what we can do. It is very difficult to get a diagnosis when we're playing a guessing game. This is where the non-verbal issue gets me flustered. I wish I could just climb in his little brain and help him form the words. It just sucks, seeing on his face he wants to say something and he can't. Imagine what it must be like in his world

Wednesday, October 8, 2008

Wordless Wednesday

My two youngest children! Aren't they so very adorable?! OOPS I'll shut up now, its suppose to be wordless wednesday!

Tuesday, October 7, 2008

freakin' out

Freakin' out.

Yep, that is what I'm doing.

Freakin' out. Oh yeah...frickin' A I am!

We are getting so close to the time for the Montreal trip. NOW it is so real. Before it was yeah I'd love for us to go but can we? Before it was weeks and even months away. Before was the well IF we can manage to go, or IF we can make all the arrangements and his (Daniel's doctors think its ok), and now its .......Well we're going.

Deposits have been made, schedules have been assigned, plans to meet up with other parents & children of ABR (who we will kindly call the "newbies of Fall 2008" from here on out).

PRESENTATION: October 19 at 10:00am

EVALUATION LEONID: October 21 at 10:00am (this is the creator of ABR) FREAK OUT TIME!!!

EVALUATION GAVIN: October 20 at 10:00

TRAINING: October 20 to October 24 from 1:30 to 4:30

Lonnie's gotten the time off work. We've almost completed the arrangements of the child that is not going so she doesn't miss any school. Now I just have to make sure that we've got her homecoming dress purchased and all the details of that because we will be coming home on the day that the dance is. FREAKIN' OUT!!

Yes I know I freak out on these things....simple things that Lonnie just says as calm as day, "We'll figure it out...everything will all work out" WHAT??? I need the details, I need to completely understand where we are going and when. I need the damn time line damn it!!

This is how a conversation goes with me and Lonnie when we are discussing things about ABR:

Melanie: "Are we leaving Friday or Saturday? Are we driving the whole way through or are we driving 1/2 way and staying in a hotel? We have to make sure we leave early enough from the hotel on Sunday to get there on time in case we get lost because ya know we've never been to Montreal before and things are written in French and I don't know french do you? did you take french in school ? I did but that was eons ago and I don't think I'll be able to follow it. So we definitely have to leave at least 30-45 minutes earlier that the time says that it takes to travel from where we are staying just in case we get lost. Do you think we should get our money switched over to Canadian money in the US or in Canada or does it really matter. What do you think, well I think that maybe we should call someone. Gosh I don't know. What do you think we should pack? Do you think they will search the car when we drive over the border. Oh you'll have to make sure you don't speed or turn right on red cause you can't do that in Canada I don't think. What if we get pulled over and the cop only talks french and he thinks we're making fun of him and he gets really ticked off and stuff?" Have you figured out yet if we're leaving on Friday or Saturday and how long will we drive before we stop, don't forget Daniel might get fussy and he hasn't driven that long before, ya know so he might be car sick. When are we leaving again? Lonnie??


Lonnie's reply: Sure whatever you want Melanie, sounds fine.

Melanie : UUUUGH........for Pete's sake did you hear anything I said??!

Sunday, October 5, 2008

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 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

Friday, October 3, 2008

1st Preschool Field Trip

It was such a proud day for this mama. He is such a big boy, and did such a great job on the field trip. I guess I am the over-protective, freakin' out type of mom that we all laugh about when you're sitting around talking. I admit I would be talking about the mom who was super sensitive and saying "oh my little baby" Blah blah blah blah.

That is me. What is my problem? Seriously? I was never like
that bad when it was my typical children going off to school, and field trips. But Daniel, geesh its like stand back Psycho Mom coming through.

First of all I had a heck of a time with Daniel going to preschool 5 days a week. Hell , lets face it, I had a problem with Preschool period. No matter if it were one day or five! I have come to grips with this but still find myself staring at the clock
to see when I go to pick him up. Its so bad that I actually volunteered to do stuff at the school while Daniel is at school in case some horrific storm or catastrophic should strike, I'd be able to get to him. I KNOW I KNOW...psycho mom. So, I have weaseled my way into being at school at least two days a week! :)

So Friday was the first field trip of the year. The first bus ride. These are some big "firsts" to be doing at only 3 years old!! The bus drivers must have thought "Oh Gosh here comes the "Psycho Mom". There I am taking pictures of my kid on the bus for gosh sakes....Daniel is probably so embarrassed of me. He's probably say "UGH!! Mom just go sit in the car!!"
They went to Blakes Apple Orchard and Pumpkin Patch. Well of course I went also!
But I did better and I didn't ride the bus with Daniel, he was a big boy. BUT I did follow behind the bus, just in case someone might need me
or something! :)

It was very cool, each child got to pick one pumpkin and 5 apples from the apple orchard. Below is the pumpkin Daniel picked out all by himself. It was so cute, I carried him out a way and set him down and off he started walking (with me holding on) and he walked right up to this pumpkin and KICKED it. I guess that was his way of saying he wanted that one!

Daddy was suppose to come on the field trip too (see I'm not the only psycho parent-Lonnie is too!) but he had to work. Bummer. But just in the nick of time Brittany (Daniel's older sister) came home from college for the weekend. SO she came along too.
If you're wondering from the photo below if Daniel doesn't like Brittany, he does. He just doesn't like the "story book barn" that they are standing in front off. There are life size characters in there and he didn't want to be taken in there, so we skipped it!!

All in all Daniel had a very good time (besides almost eating a bee) and I'm sure he can't wait for the next bus ride and field trip!!!
There are more photos over on the side bar under the Flick'r area

Wednesday, October 1, 2008

What's On Our Plate

To give you a little clue as to what is on our plate-

So far this week, we've had a neurologist appointment. Went really well and we have graduated from going to see him 4 times a year to only 2 times. He even made the comment that he believes Daniel will walk and of course potty trained! (if only I can get someone to do that part for me!)

We also had our orthopedic appointment. The doctor felt Daniel's hips and legs, said his range of motion is great, he wasn't tight or anything (YIPEE!) and that this next year is crucial for Daniel, this will be the year that will decide if he'll be able to get his upper body to talk to his lower body and get his trunk strong enough for walking. So no x-rays were needed, and by the way his spine checked out fine too!! We have to go back in 9 months because during the 3-4 yrs of age there is generally a large growth spurt. Large growth spurts mean bones grow faster than the muscles, which result in tightness. SO STRETCHES we will be doing ALL the time.

We also still have preschool 5 days a week. Meaning Daniel is getting his social interaction but also that he is generally in the seated position for 3 hours straight. This means shortening of the muscles (hamstrings and such), which can lead to tightness and difficulty getting those muscles to cooperate. Meaning...STRETCHES!! Daniel seems to love preschool (I am so happy, it was so difficult in the beginning!) we have 2 field trips that he will be going on this month (he will be taking a bus....YIKES!) One of the field trips we get to go on, the other one is just for students and no parents. It is a Halloween party that the Elks club is throwing for the special needs children. I'm a little nervous about this as Daniel gets flipped out easily with people in costumes or things flying (ghosts) and stuff.

Next on the big plate is ABR. I cannot express how excited I am to be going to Montreal for this. Nervous, excited, stomach ache, the whole thing. There is a lot of planning to do in the next 18 days. Still trying to find a cheap hotel, but one acceptable with a kitchenette so I can make dinners and save money. Hope (every cross your fingers) that gas prices stay low (ha ha ha $3.65 is low...remember when it was like $2.00?) because what we save on gas during the trip can go to the hotel or food allotment! We are juggling allot of things to be able to go, and Lonnie sold all of his guitars....(thank you). I just see wonderful things coming from this experience. I am excited to go...we have never been to Montreal so it should be nice, I am hoping we are by some parks and stuff so we can go walking to spend some of our free time.

The day we get back will be Victoria's homecoming dance. So I have to make sure we are back in time to help her get ready. We also have to find a dress!! how fun does that sound?!?! (Have I said before I hate shopping?) Remember when we went to dances and you just wore something nice like no jeans with holes in them and a nice top?!) Heck no, not you have to get the nice dress, get your hair done, nails & oh yeah according to Tori you have to go tanning too so you don't glow in the dark from the whiteness of her skin. (the kid has a tan from the summer which only ended a couple weeks ago!)

We are also in the process of getting Daniel fitted for his manual wheelchair. This in itself on someones plate is enough for a double serving of a huge headache! When you pick one of these out you have to have all these answers and if you're not really familiar with wheelchairs it is difficult. It needs to have the big wheels so we can teach Daniel to be able to propel himself (hopefully) one day, it also needs to have the handles so we can push him if needed. DO we need Tilt-in or no? what type of seating and support is needed? It must be lightweight so that when he is able to move it on his own, it isn't' heavy. Believe it or not some of these bad boys are pretty heavy. Do you want it to be a solid chair or do you want it to be able to fold up (this will limit your choices greatly). We want it to be less chair more Daniel. We want people to notice Daniel not the chair. We don't want the chair to look to medically like, but more just like a seat. I don't think we're asking too much do you?!?!

On top of that Daniel is outgrowing his stander. This is an important piece of equipment although many people don't realize it. This helps with weight bearing and getting the bone density stronger. This is a must. it stretches the legs also. So we are in the process of trying to find a new stander. What people don't realize is that getting new equipment is not an easy thing. You have to time it correctly. Insurances don't like to get bombarded with a bunch of equipment all at the same time. You have to space it out. You have to decide what you want more, send that through insurance and hope for approval, generally we'll take the most expensive thing and try to get insurance to cover that so we can pay for the less expensive out of pocket(still in the thousands of dollars but cheaper area).

Daniel also is trying to get approval for the LiteGait which will really help him with his walking. This is used for many reason and can also be used over a treadmill to help with his exercise.

Next lets move onto his augmentative device which we are waiting for approval on. The prentke romich Eco-14. This little doodad will give Daniel his voice. This will allow Daniel to be able to tell us what he wants, what he is feeling, it will allow him to be heard. I am torn with this one because i can't wait to have him get it and i can learn what is going on in that little head of his. But makes me sad because the voice I will hear will not be unique to Daniel. It will be a voice that another little boy somewhere else has too. I want Daniel's voice. Makes me teary, because i want it to come from his mouth.....OK lets me on before I start crying.

We have ordered (these are fun -NOT), that are not covered by insurance. But are needed and help greatly. Daniel got fitted and we just got last week his SPIO vest (gives great trunk support), and today we ordered from Benik his hand/thumb splints. Now wouldn't you think that when you order these you are getting a set? Nope priced individually. I guess I just thought of them like get two right?!?!? NOPE not with thumb splints!! CA-ching!!! Next we have the 2 button recordable help Daniel with his way to answer yes or no to questions that are asked of him. Do you need to go potty? Do you want a snack? Do you want chocolate pudding? Do you want a drink? Are you ready for a nap? (that ones easy he'll always pick NO)
Ah then we are waiting to see if we get approval for the Vita-mix blender which is needed to start doing Daniel's meals, to get him the nutrients he needs so we don't have to add a feeding tube to our plate. If we don't get approval this will be on our list of things we must purchase without insurance assistance.

Oh yeah and we mustn't forget the 2 times of physical therapy a week, along with the occupational therapy 2 times a week, and speech therapy another 2 days a week. And all the additional therapy that we must do at home....
On top of all this I have a teenage daughter to goes to high school, who doesn't drive, who is very popular and likes to be social, plays sports which has tournaments on the weekends, practices everyday, have 3 games a week, who also works part time at a really cool place that i wish I could escape too.

can't wait for tomorrow ;)