Wiggles and a Big Surprise! **AMENDED**

We were very lucky and got to go see the Wiggles. Daniel loves the Wiggles. We were able to take Daniel's PT therapist and her daughter (who is a month younger than Daniel). During the whole show Daniel didn't make a peep, hardly a smile, but boy was he engrossed in the show. I wasn't sure he was diggin' it too much but towards the end I think he got use to all the noise, and the lighting changes! But all in all, a fun time had by all.

Then when we pull in our driveway at 8:30 last night, there is a big box sitting by our side door. WOOOOOOO I love boxes! I love packages of all sorts! But boo woo.....it wasn't for me!! But it was for Daniel and we got to open together!! What a wonderful surprise and a mystery too! Look what was inside!

Yep you got it!! The Childrite seat that we've been wanting. I have been following the other kids in our yahoo support groups that have them, and I've been wanting to get Daniel one. I knew he'd sit up and it would work awesome! Look at that! I love it, I was so excited I put him into it while he was half asleep from a long day. I couldn't wait until this morning to get him into it again!! It is absolutely PERFECT!!!

The Mystery - there was no card, no indication of who exactly its from! So, whoever you are.....Daniel is giving you many many big kisses (open mouth of course!) and hugs. I also say thank you thank you thank you. You are truly a very cool person!
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We are going to use the new seat when we are doing our "reading". Part of the IAHP program is teaching your child to read. I have read the books by Glenn Doman that are required for the program that we are determined to go to. I am starting to get Daniel use to parts of the program that I can start at home now. Part of that is the reading program. The books say that even special needs children with severe brain injuries can learn to read. We are only at the beginning but I can tell you Daniel gets a kick out of the "reading" sessions. And it only takes a few minutes each day. I am loving it. We will see what he retains, but he is definitely paying attention. He wants to do more and more, but I'm following the rules to the tee from the book!

Gotta run and get ready for therapy, just wanted to say THANK YOU to our mystery seat giver~
AMENDED: WE FOUND OUT WHO THE CHILDRITE BUMBO WAS FROM! AUNT KARRIE, UNCLE VINCE, DILLON & ROCCO.
THANK YOU THANK YOU THANK YOU!

We took it to therapy today (speech, pt and ot) they all loved it too!

Labels, and His Future

Most labels that doctors and specialists give special needs children come with specific lists of what to expect and what the future holds. Don’t believe them.
What the future holds is not something that can be predetermined or preset. Each individual is different.
What the future holds is based upon the opportunities that are presented to the individual.

I strongly believe with every ounce of my being that the above statement is true. Had we believed what we read when we first found out about Daniel's "problems", had we given up right then and there and accepted what we read, what people told us, what the world says. Daniel would not be doing the things he is doing today. As little as some people think these accomplishments are, they are huge. Daniel is a fighter, and funny enough I've come to learn that I am a fighter and his dad is a fighter. As much as we don't like being aggressive, or harsh, or b*tchy, yelling or whatever people think we are. We are this way because we are fighting to give Daniel everything that we possibly can.

Granted I have probably burned some bridges that I wish I hadn't along the way, and for that I am sorry. We lash out at people when we are hurt. Let me rephrase that. I lash out at people when I am hurt, scared, confused. I tend to pull away from people who are willing to help, who want to help because I feel like I am a charity case. I don't want any ones pity, I don't want anyone feeling sorry that Daniel has issues. I wouldn't change a thing with Daniel. I love Daniel more than life itself. I have a special bond with Daniel that most parents don;t get to experience with their typical children. I can communicate with my son without words, without hearing his voice. I know, I can feel what he wants, and what he needs. Sorry, I got off topic there. At the beginning I pushed people away because I didn't want to answer questions, I didn't want to have to explain. Why? because I didn't know the answers (I still don't) I didn't know what the future held (I still don't, I can't even think about the future, all I think about is the day and how we'll make it through today.) I didn't like having to see other children, who didn't have issues. I didn't want to see typical children and them succeeding in everything that they did. I didn't want to hear how well they were doing, nor see it. (I still don't but its getting better). It is very hard to see a child younger that your child doing things your child CAN'T do. It is very hard, although you are really happy that child is succeeding, you secretly wish your child could. Its a heartbreak every time. So you pull yourself away from those situations and don't put yourself out there to get hurt. Although no one is trying to hurt you purposefully, it still does. People don't understand. They can't unless they are walking in your shoes. Your whole life/dreams are now changed, you might not have wanted it to, you didn't ask for it to be this way. But guess what....it is. And we can say "oh it's OK we're handling it, things are fine" and we are handling it. But please, don't think that anyone ever totally accepts it. Yes I understand we have a special needs child, and I love him with all my heart, and I know that he will have his issues, but do I wish that he didn't? Hell yes. Do I see other 3 years old walking and running, and wish that Daniel was doing that? Yes. Do I see other 3 year old little boys talking to their mommas and telling them they love them and wish that I could hear those words from Daniel? yes you better believe it.

Anyways, back to the topic, "what his future holds". Daniel is where he is today because of countless hours of physical therapy, occupational therapy, speech/augmentative therapy, feeding therapy. And he is doing well. But I have this nagging feeling that there is something more that should be done. As many hours as Daniel has put into this therapies, I have spent researching alternative therapies, researched different techniques, asked thousands of questions to numerous people, read books, read research papers and then had to look up the words to see exactly what they were talking about! We had to learn things we never even heard of before. Ask me 3 years ago what augmentative was and I would have shrugged my shoulders. Ask me what a Bilateral Perisylvian Polymicrogyria was and I would have looked at you with a blank stare, glazed over eyes and said "huh?"

With all this research, I think that Daniel is unique in what therapies he needs. There aren't many children out there that have exactly what Daniel has. (BPP, epilepsy, spastic quad CP, feeding issues, apraxia, global developmental delays, etc.) So I don't think there is just one type of therapy that will work for him. I do believe that the traditional therapies that he has been going to for the past 2 1/2 yrs are helping him. BUT, I follow it with a "but" because again, I think he needs more. The "more" that I think he needs is at the Institute of Achievement for Human Potential. And the "more" I think he needs is also the ABR therapy in Canada. There are numerous reasons why I believe these two types of therapy along with his traditional therapy are needed. Currently we are treating Daniel's arms, legs and body, trying to make them work and heal. But we aren't "healing" his original problem. We aren't "healing" his brain. That is where the IAHP comes into play. I want to attend the one week training course of How to help your brain injured child. This trains ME on how to help Daniel reach his fullest potential. This doesn't require Daniel to go outside the home, this doesn't require someone else to attempt to help my child. This requires ME to learn what I can do, and what I need and want to do because I believe so strongly that there is more to Daniel that what the specialist believe. I don't need years and years of training, to look at reports, MRI, CAT scans, IQ tests, to tell me what Daniel is capable of. All I have to do is look into his eyes. I can see in his eyes that he is aware, that he is there. The eyes tell it all.

What the future holds is based upon the opportunities that are presented to the individual
and we, as Daniel's parents intend to give him every opportunity we can. So knowing that, please accept apologies from us/me if you think we are harsh, or rude, or mean spirited. We are not. I am not. I am trying to cope, and fight for sanity in a very scary world that I know not much about, and I am trying to learn as I go, keep my head above water,maintain some normalcy, and give my son every opportunity that I can.

So, please follow up in the next couple of month because we will be going to the IAHP, and we will be selling off whatever we need to sell to be able to go! :) (you think I'm joking, I am not!)
If anyone is a crafty person and wants to buy a really kick ass sewing machine, I have one that is less that a year old. Lonnie has some guitars he is selling, and oh yeah, we're thinking about downgrading to the large cardboard box for a house, so if you're looking and in Michigan! LOL

and he draws.......CIRCLES!!!

At Occupational therapy yesterday Daniel was taught how to draw circles. He is such a smart little guy. It just kills me sometimes that he has this body that just won't cooperate with him all the way! But believe me he is a fighter! He'll yell at his arm when it doesn't move the way he wants it too! Never underestimate the howl of a little boy yelling at his arm. He is simply saying "Hey! move over there and stop fighting me cause I'm gonna win!" and he ususally does!

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!

BEWARE OF THE DANIEL

You would think that the animal above is what attacked me and so violently bit me. But noooooooooooooo....... (prepare yourselves..) below is the animal that did the damage. The dreaded "Daniel".

WARNING: When your child does not have proper control of his chompers, and does not know how to release his jaw and tends to panic when there is something solid in his mouth, DO NOT, I repeat, DO NOT attempt to use your finger to remove a large piece of food from his mouth!

Daniel was eating and he bit off just a little too big of a bite. Because Daniel has oral/feeding issues, this is where I generally am able to get him to spit it out. I could see the panic set in that "Oh crap, there is something in my mouth" so I immediately asked him to spit and he didn't. I couldn't have him swallow it because he would choke and I'd totally freak out. SO, I put my finger in to dislodge the food and he clamped down. There was no scream, there was just the fake calm of...

"Daniel sweetie....open your mouth please" and of course he is freakin' a tad so he locks his jaw.

"Daniel, pleaseeeeeeeeeeeee open your mouth, oh god, please can I see in your mouth sweetie?"

Now I am using my other hand to try to pry his mouth open, plug his nose, and now I'm starting to panic!! After what seemed like forever, he finally let loose. No I did not reprimand him. He did not know he was hurting me and he didn't do it intentionally. Its not like he thought, oooh there is mom's finger stuck in my mouth. So, when he let loose my response was, "Oh thank you punkin, that was good that you opened your mouth!" and he was so happy to be such a good listener! :)

I did think for a brief few second or two thought I would need stitches because of the amount of blood that was pouring out of the wound. The photo was taken about 5 hours after the incident so doesn't look as bad as it previously did. But I will say, it still hurts like a s.o.b.

Flashlight Tag....well sort of!

Talk about being overwhelmed and just caught up in everything! I don't know where the time has gone but I could got for passing a new rule that the day should have more than 24 hours in it!
Below are just a few pictures of a new game we created at home. After playing it I thought "wow! what a cool game to get Daniel to really understand his eye gaze". We have been working with Daniel on his eye gaze with his augmentative device (its our back up to touching the screen. the one we are getting have the laser for eye selection). Here is what you would see if you walk into a room at our house at night time! Its kind of like flashlight tag, but not really!

If you can't figure out what the photo is above, that is Daniel with his flashlight. Photo taken without a flash on.
Daniel with his flashlight (headlight) taken with flash on the camera
Daniel thinking he's the top notch winner with the cool head gear! the idea is that with the lights out, Daniel is the only one with the headlight. When he turns his head and the light stops on you......you get to move and make funny faces! Or we sit there and I ask him to look for his mickey mouse, Elmo, daddy, etc. Then when he stops his light on it we all clap and shout for joy. Its a fun little game and like I said he thinks he's really cool. Anyways a little pat on the back to mom and dad for coming up with a cool game what works as therapy too! ;)

Below are just a few pictures from therapies this past week or so.

Daniel listening intently to Ms. Carol's directions using the lite gait walker that we want to get. If someone would like to donate one to us.........what would be just swell!

Daniel writing on the Water Doodle. (He hasn't decided yet if he is left or right handed, it switches from day to day!)

Daniel continues to do the VitalStim at therapy with Ms. Pat. It is going so well. His swallows have gotten notably better, louder, quicker and stronger. This makes me a very happy mama. We will continue with this type of therapy. We are also back to doing the TES therapy at night, where Daniel wears his electrodes while he sleeps to stim the muscles of his truck. This is a long time therapy and will take many many many months, but it is while he sleeps and he doesn't seem to mind. We are also in the middle of his weaning of the anti-seizure meds. Makes me very nervous because I am terrified the seizures will come back and we wont' be able to control them. Anyways, (everyone knock on wood please) all is going well. Actually since starting the wean, I think he is becoming more alert. His processing time is getting quicker. You ask him to do something and he is able to do it much much quicker. This is a very good thing.

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!

Swim, swim, swim

Daniel started swimming therapy. We tried this a couple months ago and it was a HUGE no go.
He cried, he screamed, and his little arms moved quicker than I ever imagined they could. We tried it for about 3 weeks, the minute I would start to head down the hallway to the changing room, tears started flowing. We even tried it with his big sister getting in the pool with him. Nope, no can do. I couldn't figure it out because Daniel LOVES water, absolutely loves it. You turn on the water to do dishes and he runs across the room in the walker just to see the water. Loves the bath, the shower, running his hands in water, the water table at therapy, he loves swimming in our pool. Take him to swim therapy and he loses his mind! So we stopped. It was productive and he was more worked up than anything else, it wasn't helping him.

So after our Florida trip and Daniel almost living in the pool at GKTW village, we decided to try it again, at a different pool, with his favorite therapist! ....and here are the results!

To explain to you how incredible Daniel's PT is and how much she cares about the kids she works with. She knew how badly I wanted Daniel to do swim therapy. When we started it months ago it was at a different location with a completely new PT. Part of why he hated it, he didn't know the PT and he was scared, wasn't comfortable with it. His regular PT, also wanted Daniel to use the pool. Well our regular PT location doesn't have a pool in the Pediatric Rehab department. She actually went and found that there was a small pool in the Adult Rehab, on a completely different floor,same building, that no one knew about. She went to her manager and asked for special approval to let HER take Daniel into the pool. Then they had to get the approval from a completely different department (Adult Rehab). She pulled a lot of strings. Prior to Daniel no child had gotten swim therapy at this building! I think that is completely and totally the coolest thing. Daniel felt comfortable with someone he's been with for 2 1/2 yrs, and is doing so well with it. I am very thankful to have her as Daniel's therapist. She has been a life saver in so many ways. Countless!

My Gold Star Award goes to Ms. Carol!

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?