..And We Have A Floor!

Daniel is doing well. He is absolutely LOVING the new floors, he can get around so much better. Its like opening up a whole new world to him. Because there is no carpet anymore and the high ceilings in the back family room, we have a lot of echoing....which Daniel has discovered also! Isn't he just the smartest!

As you can see we aren't finished yet, there is still a lot of trim work that needs to be done along with painting 3 large rooms!Here is a close up of the ramp area....before it got finished and Daniel can run down it. This is the new fun and exciting thing to do at our house. Run to the ramp in our pony walker and see if we can give mom a heart attack by how we go down and fly across the room!

This past weekend was Lonnie's birthday also. So Happy Birthday to him. Didn't do too much, just had his family over to celebrate with a lasagna dinner (and Lonnie stuck to his diet with a diet version of fat free/sugar free/whole wheat lasagna just for him!).

Would just like to mention that Lonnie has more willpower than me and has stuck to his dieting and is now weighting in 20 lbs less that he was at the beginning of January! Go LONNIE! I guess he'll meet his goal before we go to Disney in 84 days than I will. I'm a stress eater.........need I say more?!?!

And a Pinch of B*tchiness!

Ok so it continues from the other day (a little bit of this, and a little bit of that), with a little blend of another day (tirade, rant, complaining, mental breakdown...)and here you have my story....



Daniel is doing drivers training, to do his drivers training for his wheelchair we must go into the hallways and lobby of his therapy building among the "normal" population. Normally Daniel will get from passer-byers, a smile, or "wow you're doing so good", or "Slow down speedy!" or better yet from a little "typical boy" holding his dads hand, "I want one of those!". So as you can see generally, they are good comments.



Well yesterday, we are on the short journey down the hall to the lobby and some random older lady says out of no where in a rather crappy tone..."WHAT HAPPENED TO HIM?". Well Daniel's therapist looks at me, for what I thought was for me to explain, so I simply said "He has CP, so he can't walk". She proceeds to say "Oh we got one of those in our family too, and she is an ornery little 'you-know-what'...just grunts and points cause she doesn't try to talk". At this point I just ignore her and move on. When we are away from her Daniel's therapists shakes her head and says I don't know what is wrong with people. I would NEVER think to say to someone WHAT HAPPENED TO HIM.



Well I agree with her wholeheartedly, and the woman got the best of me on that day because all I could think about last night as I laid in bed, I envisioned myself doing this...



Option One:

"WHAT HAPPENED TO HIM?"

"Nothing "happened" to him, what the hell HAPPENED TO YOU!?!"



Option Two:

"WHAT HAPPENED TO HIM?"

"He was blessed and got this wonderful ability to attract all the "a$$holes" to come up and ask idiotic questions so we know for future reference what a dipsh*t you are."



Option Three:

To let the woman ask her stupid question in her stupid holier than thou attitude, but then to follow her into the waiting room that was full, let her sit down. Then walk in behind her and say out loud for all to hear....

I say: "Can I ask you a question?"

she nods

I say: "What was possibly going through your mind at the time you would ask a question like "What happened to him" in front of a little boy who is in a wheelchair? Does that show any tack? Does that show any manners? First, if something had "happened" to a child to make him have to use a wheelchair, don't you think it would have been something traumatic, that perhaps would UPSET the parent or the CHILD to have some stranger ask so harshly? The child who understands everything you are saying? Are you a moronic a$$?. Might I suggest in the future if curiousity gets the better of you, that you first check yourself, and decide if it is really a good decision or time to ask the question. Second, take the disgusted look off your face. Third: whatever words you were going to use to ask the question.....find different ones because the ones you used were inconsiderate, and rude. Fourth: Ask the question, and be ready because next time, I don't think you're goign to find a parent off guard like you did me...........and you are going to hear a mouthful."


I like to imagine what I would say.....and one day, I will.

TIRADE, RANT, COMPLAINING, MENTAL BREAKDOWN...CALL IT WHAT YOU WILL

They say that a child can sense things, that they can feel if you are upset or not.

I have been very down lately and I can't actually tell you why....I can list off the things that are going well for everyone and stuff, but then........I have this list of things that I just can't get to. I never seem to have time, I can't finish it, it all gets too overwhelming. I have to wait to do this thing before that thing gets done, and that thing can't get done because well that "other" thing wasn't completed right. It is just frustrating. I look at other people and I get ticked off because I think, how the heck are they able to do it and I can't get it together? I'm a pretty smart person, what the heck is wrong with me?



Anyways, I have been down lately, havent' been keeping up on my normal routine of things, just can't get into the groove of getting the stuff done that I have in my head that needs to get done. How ask my husband and he'll tell you that I am too critical, I am too picky, I am too over obsessed with having things done a certain way. That I harp too much on something that isn't that really big of a deal, but because I harp on it that I make things worse. That is not what my intent is....my intent is to try to get things done before the due date, before it becomes too big or too late to handle and it has now snowballed into another issue that needs to be taken care of....I am trying to be proactive and not reactive. I don't like waiting for people to do what they know needs to be done, but they wait until the last minute to do it. And mind you what I am waiting for them to complete is important for what I need to complete so when they come down to the wire and can't complete the task that they needed to complete because they waited until the last minute and now something isn't working right...that throws off MY schedule.

I have plans in my head that I want/need to get done and when others aren't on the same page as me it gets me frustrated. And to top it all off, it infuriates me when someone says "relax, we have time" YOU MIGHT have time, I dont' have time. If I had time, then there wouldn't be this huge long, never ending list of crap to do, that never gets done." I am the one that is laying in bed at night thinking what a horrible person I am because I didn't get to this childs game,or called this family member, or get this part of therapy done, or get this for my significant other, or that I snapped because someone told me to "chill", sit down and enjoy life. DAMN IT, I am trying but when it seems NO ONE else in "my world" can see that these things get done or NEED to be done and I feel I am the only one directing this whole show...........

OK I AM DONE.........

how again I will say....."they say a child can sense when you're stressed, unhappy........."
I believe this to be so true. Daniel has not been himself lately either, he seems not his usual self. He is smiling still, but he is quiet, he doesn't want to do the walker as much, and this is because (I believe) he senses that I am down. That I feel like laying down and giving up. I haven't said those words out loud. I don't have too...he just knows. Its not that I want to give up on Daniel and getting him to where he needs to be. There is soooooo much more that needs to be taken care of besides Daniel. So please.....I am not blaming Daniel, nor do I think it his fault. I am simply saying...... I am just tired. Physically and emotional tired. Beaten down. I look in the mirror and I dont' like what or who I see. It is not the person I was 3 or 4 years ago. I don't like who I have become. I am not a witchy person, I like to help people, I am not normally mean to people. But when I feel like I am the only one struggling the only one fighting to get things done. I get angry and resentful. Damn it I want to live too....I dont' want to have to worry all the time if everything is getting done. I want to be the one that doesn't have any plans, or just "wings" it. I would love to be able to get a phone call and go out, run to the store, without feeling guilty for wanting to go. No I don't go......because then that will throw things off schedule and if I go, well then, it will come back to bite me later. I will have missed doing something I should have been doing.

I used to be really good at multi-tasking, at managing people...in fact that is what I use to do..now I can't even manage my own little things. I use to have a routine, and everyone was happy......everyone got what they needed. I fight for what I feel I need to fight for. I get all the time, pick your battles......dont' sweat the small stuff. Well dears let me tell you that small stuff......it'll snowball, and come up again to bite you in the arse in a couple weeks. Because what you thought was "small stuff" before is now one big massive ball of F'ed up Crap...and now we have to start digging. Family get your shovels.......we're going diggin'

Why can't people turn in paperwork that they said they turned in a couple weeks ago, but now we find out that nope......must have slipped through the cracks, or I forgot, I must have misplaced that.

I say in our "welcome page" that this blog is about dealing with a child that has special needs, dealing physically and emotionally.......Well here is the emotionally part, and its not even from the child the blog is about....it's his mother! :)
Mom in a mini meltdown and not seeing light at the end of the tunnel.....to be continued at a later date.

A Little Bit of This and A Little Bit of That

SURGERY
So Daniel is recovering wonderfully from his surgeries.

We only had to give him some pain medicine twice, which is good because we hate giving him any more meds that necessary. And I am happy to report that there was no seizures from the surgery. no seizures period!


POWER WHEELCHAIR
Daniel is doing really well with his power wheelchair and his drivers training is good. When you put him in the chair he immediately puts his hand up on the joystick because he knows that is how he gets "speed". We are still working on the directions...left, right, backwards......he knows forward very well and he understands stopping. From what I understanding learning to stop and getting the joystick right to the center is some was difficult. We are playing computer games at therapy with a joy stick to get him use to a joystick and also to learn that if you move it to the left you're going to go left. Daniel being as social as he is, does have some difficulty with watching the road. He is a typical boy, when a girl walks by he forgets what he is doing, and watches her.....which leads to running into the wall or turning his arm and makign the chair follow the girl. Thats a daddy's boy for ya eh?!?


AUGMENTATIVE THERAPY
Next week during his Augmentative Therapy (Speech) we will have someone comign with a piece of equipment for Daniel to test out. Because Daniel's eye gaze is so great, someone is coming out with a device that will have a laser that will read Daniel's eye gaze and select the options on the computer that he wants. I am excited by this and just fasinated that they can do this type of thing, but then scared that this might be his option. That he can't get his hands to work well enough for the fine motor of selecting the icons on the DynaVox. Anyways.....I am always willing to test out things to see what is going to be the best for Daniel. I might not like them......but if it will make Daniel's journey through communication better and easier, I'm all for it. I just don't want to give up on him using his hands also, nor will I give up on the fact that I will continue to get Daniel to say "his words" and not rely completely on an augmentative device. Like I said he is awesome with the eye gaze and his facial expressions. The kid can raise his eyebrows for "yes" like no other child I have ever met! Those eyebrows are very expressive and sometimes have a mind of their own! I love it when he is interested in something and up goes the eyebrows! SO next week I will update you on how that eye gaze equipment works. Then at the end of February we are going to have the Tango to try out. I am excited about this also as it is smaller and lighter weight than the DynaVox but I don't think its been around as much. There is another one that his therapist learned about that says looks pretty cool, called a Tellus. The graphics are suppose to be brighter and quicker on this one. So if anyone knows anything about this device please leave a comment or send me an email I'd love to hear about the Tellus or the Tango.

FAMILY
Lets see, where to begin..........Caitlin is doing really well at her home, still getting her house to exactly the way she wants. Alex is doing awesome with her baby Zachary (or as I call him Stumpy!) will almost be 4 months old. Brittany is doing good at college and has some really good job opportunities lined up for the summer. Those kinds that you always wish you could get.....like at amusement parks and stuff. So she just h as to decide what she wants to do. Victoria, as usual....our brainiac child. Loves school and is doing so well as a freshman in many AP (advance placement classes) and still getting a wonderful grade point average. And then there is the little one (who isnt' so little anymore) Daniel......and well you know how he is doing.
Lonnie is doing well also.......he has been dieting and has lost almost 20 lbs. YEA for Lonnie. His birthday is also coming up this next week......the big 38!

COMPUTER
As you might remember from a couple months ago, Lonnie reminded everyone of the all important...BACK UP YOUR COMPUTER. We just now got our hard drive back from being repaired. Now mind you normally when someone tells me its going to be 100's and 100's of the precious greenbacks to save data I would have told them to fly a kite..............but this time we had no choice....that hard drive had 1000's of pictures of family and also documented all of Daniel's life up until it crashed....so how could we say no? Just sucks the amount of money that we had to pay, but we have pictures.

SCHOOL
Well, I think I am coming to grips with the fact that Daniel will be attending preschool next year. Now, it might not be full-time. (LOL I'm typing this and Lonnie stands over my shoulder says "He's not going to school" and walks away!) We think Daniel is very capable of going to school, and being as social as he is I think he'd love it........its Lonnie and I that are having the problems with him being away from us. So, here is some of the criteria that I have for Daniel going to school,. It will NOT be full time. I will be able to volunteer at the school/classroom. I will be able to visit at any time. I also would like Daniel to be able to use his wheelchair and his Nimbo Walker fairly well. I would also like him to have use of his AAC Device. I would love for him to be potty trained too. We have kind of gotten off schedule on that.

HOUSE
Let me start off my letting you know that I have a sensory issue......I don't like the feel of flour.....it makes me cringe, I can't seem to get the feeling off my hands once I have flour on it. That being said...........this is what my whole house feels liek right now and I can't stand it. From the reconstruction of the house and the floor getting put in.......OH MY GOD!!!
Then, I also have the issue of having an "I hate clutter phobia" I can't stand things being out of place, or sitting where it doesn't belong. I don't like knick knacks, I don't like piles, I don't like things not to be in their rightful places.............I can't begin to tell you that we have three large rooms that were full of stuff shoveled into a smaller room(s) and stuff that should be in a living room in now in a bedroom........OH MY GOD!!!!

Surgery Sucks!

Reporting to the hospital at 6:15 a.m.

First photo taken at 7:00, tired & hungry but in good spirits

Very happy and doing the happy dance .........lets get this show on the road!




In these next two photos we are waiting for Daniel to wake up. After surgery he woke up and was in some pain so they gave him demerol. They felt it was better to let him wake up in my arms then to be with complete strangers.

Thank You to that smart nurse!

Daniel coming off the drugs and realizing that his eye is covered and his doesn't like where he is at. We needed to get him to drink something and he didn't want any part of that. Every time he cried his oxygen levels went down to the low 60's. That is quite startling when those alarms start going off! Freaked me out a bit, I thought I was going to need some oxygen after that.

That was my WTF! moment.

So, Daniel is now adenoid free. He also had his right tear duct probed. Oh yeah, and the cyst under his upper eyelid and growth that was on the cyst were removed and sent off for evaluation. Enough for one visit, ya think? Now we wait for the results of that....doctor didn't seem worried about it, so for once I'm not going to be yet either!

Now he is asleep at home in bed.......protecting his eye to make sure no one comes near him again! My poor baby.

Is That Really Suppose to Be Elmo?!

We read in the little city paper that our public library was going to be celebrating Elmo's Birthday. Elmo's Birthday eh?? It only cost one dollar.....crafts, book reading, you get to meet Elmo, and have cake and ice cream.

So, shortly before party time, we gather up Daniel and Tori to take them to see Elmo. Here are some photos of Daniel and Tori doing the craft, and Daniel listening intently to the story. You will also see some photos of what I believe are suppose to be "Elmo", but I'm not really sure! (The following part of this paragrapgh was added by Lonnie. I didn't want to everyone to think that Melanie was so mean, so I took it upon myself to elaborate:) Looks more like some hobo they drug out of the gutter out back. Oh, and they didn't change his clothes. Wearing tattered rags and a paper mache head that frightened all of us when he entered. He was also wearing black sandals with red socks. Sorry, don't get me wrong, it was a very nice thing they did for the kids, but we all just found it rather humorous. I actually looked around the room when he walked in, and everyone seemed to be reacting the same way. Nevertheless, Daniel had a good time anyway.

Don't know what I expected.......it was only $1.....but sheesh at least have a real Elmo costume!

And here is a funny photo of Victoria enjoying her "Grande Deluxe Carmel Cream Frapp minus Coffee"

A Little Bit of Everything

Ok a few things to post about.

1) Check out the fun header that Lonnie made.........anyone notice who's running around with Spongebob???

I love it, I think its a hoot. We tentatively have a new name to Daniel's blog which is called "better than normal"

2) Daniel goes for his surgeries on Monday, bright and early at 6:15 a.m. we have to check in but his surgery will be at 7:30 a.m. Hopefully the surgeons all show up in time and everything goes well. Now that we have the time set up I am very nervous.

3) Here are a couple photos of Daniel with his nephew (yes you read it right) Here is Daniel and little Zachary, who isn't so little anymore

.

Neither of them are real sure that they like each other enough to be right next to each other!

See how tall Daniel is??! or maybe its now short Zachary is!!! HA HA HA HA.. Stumpy!