Here are some more photos of the construction of the ramp (for the wheelchair), steps, foyer and new ceiling and walls. Starting to look pretty saaaa'weet don't you think?!?!
Now the next step is to mud in all the drywall and wait for the flooring to come in....should be cool.
- ABR - Advanced Bio-Mechanical Rehabilitation
- Canine Companions for Independence
- Cerebral Palsy Treatments
- Conductive Learning Center
- Dolphin Therapy
- Hyperbaric Oxygen Treatment
- Stem Cell Therapies
- TENS - Transcutaneous Electrical Nerve Stimulation
- TES - Threshold Electrical Stimulation
- December (1)
- November (4)
- October (2)
- September (2)
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- June (9)
- May (11)
- April (13)
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- March (2)
- February (1)
Thursday, January 31, 2008
Here are some more photos of the construction of the ramp (for the wheelchair), steps, foyer and new ceiling and walls. Starting to look pretty saaaa'weet don't you think?!?!
Wednesday, January 30, 2008
Tag Your It!
This is my first time doing one of these but "C" from Dura Mater has tagged me so I feel compelled to complete it..........it's only right. You're invited, you should participate! ;)
Here are the rules:
1. Pick up the nearest book (of at least 123 pages).
2. Open the book to page 123.
3. Find the fifth sentence.
4. Post the next three sentences.
5. Tag five people
#5 might be a bit hard as I don't know that I know enough blogging people who will actually take the time to do it, so I will follow "C's" example, and if anyone reads the blog and would like to participate, that would be awesome. (Make it seem like someone reads my blog, and likes it enough to respond!)
If you don't have a blog, leave your three sentences in the comments.
Here is mine from "The Secret" (which I have not read yet, but two of my sisters strongly recommend it!) by Rhonda Byrne
Page 123 Sentence # 5 Reads:
"When you feel bad about yourself, you block the love and instead you attract more people and situations that will continue to make you feel bad about yourself."
The next 3 sentences:
"Focus on the qualities you love about yourself and the law of attraction will show you more great things about you."
"To make a relationship work, focus on what you appreciate about the other person, and not your complaints. When you focus on the strengths, you will get more of them.
Ok, now I don't know now to explain this, and it is very odd. I never get invites to do this, and my sister Mary has been telling me to read the book for months........almost everytime I talk to her she says "have you read the book Mel?" and no I keep coming up with excuses......
Today I had a big fight with my significant other, and said some mean things because I was frustrated and pi$$ed off at myself for many self hating reasons........and I started a fight....
and I am sorry......
Now, if you'll excuse me, I have a book to read!
Now for the 5 people I tag.....
Stephanie - Drew's mom, Melissa - Nathan's mommy, Stacy - Evan's mom, Caitlin - my oldest daughter, Brittany - my third daughter (off at college and you better have a book beside you!)
Caitlin & Brittany don't have blogs but will leave comments on here (why? because I'm your mom and I said so!)
Posted by Melanie at 9:12 AM
Tuesday, January 29, 2008
Posted by Melanie at 10:08 AM
Sunday, January 27, 2008
OK, so this theme is a little more Daniel. He loves Spongebob and it has some fun colors. The only problem now is the 'comments' link is not visible on the main page. You actually have to click on the title of each post to get to the comments or to leave a comment. I am going to see if I can fix this because it is really irritating me and I am sure Melanie won't stand for it! If not, I will have to change the theme yet again. Stay tuned.
Well, I've fixed the 'comments' link. Now visible again (see below). So, I guess we will kick the tires on this new theme for a while.
Oh yeah, and I think I have come up with a new name for the Blog that sums up exactly how we feel about Daniel. Need to run it by the boss before I officially change the title.
Posted by Lonnie at 3:54 PM
Saturday, January 26, 2008
Well as you can see, we've switched up the colors of Daniel's Blog Page. What do you think?
I'm still not sure if I'm liking it too much. Is it really Daniel-ish?! But for now, its better than the boring plain standard blue.
Now we are trying to come up with a cute little title for his Blog instead of his name. Something unique, and cool. Kind of like how Moo's Blog is called "Terribly Palsy" (I love the header on this one too!), or Ellie's Blog is called 'Ryn Tale's Book of Days". You get the idea I'm sure. So........
for all the readers out there......here is your quest for the day
Posted by Melanie at 4:36 PM
Wednesday, January 23, 2008
Just can't wait to get going...........'Com on Mom lets go!!!
You want me to go slow???? I laugh in your face!
Isn't he good? He's already checking out over his right shoulder to make sure no one is behind him!
Monday, January 21, 2008
Ok, so I don't know what planet I've been on for the past year or so, but today something was validated and all I could say was....."OMG!, Really? OMG......no way, What the he!! are you people thinking?!?!"
Me, send my baby off to preschool, 5 days a week? ARE YOU FRICKIN' KIDDING ME?!?!
So my oldest daughter Ms. C, tells me that yeah when Daniel turns 3 he'll be going to preschool through Early Intervention. I laughed. She said, "No really mom.....he will."
Not in this life time!
So, this week, the teacher and the therapist from EI were at the house for their normal visit and I brought up the subject, and both of them "Oh yeah.....in either of 3 places.....one being right down the street, the other in a different city that is maybe 10-15 minutes away, or one that is 45 minutes away by bus! Did you all catch that? 45 MINUTES?!?!
I am sure that at this point I must have been looking at them like they had their heads cut off.
(I know you guys are laughing at me right now, thinking it comical) I am serious, since I got the confirmation I have been in tears. AND ITS NOT EVEN GOING TO HAPPEN UNTIL NEXT SCHOOL YEAR!
The thought of a school bus pulling up to my house, to take Daniel to school FULL TIME is
NOT GOING TO HAPPEN!
Yes, I know, I've done it before with my other children......but they were typical children. They could come home and tell me if someone was mean to them, or if they got hit, or what they had for snack, or if they went potty. Daniel can't. He is helpless.....he can't run from the other kids, he can't voice his opinion. I am his legs, and I am his voice, and DAMN IT......I am not ready, nor will I be ready in 8 months. SERIOUSLY.
I know people I've talk to said, well look at all the time you'll have to do what you want to do, or get a part time job......ARE YOU KIDDING ME? HE IS MY LIFE! I DON'T WANT THE TIME TO DO WHAT I WANT. I AM ALREADY DOING WHAT I WANT!
I am such a hypocrite......on one hand I complain that I want people to treat Daniel like a typical child, not a child with special needs. And now I'm saying........WHOA! Hold up here, its too soon.....not my child, he has special needs he can't possibly go to school full time!
I hadn't even begun to think about school.......all I have focused on in the past 2 1/2 years is physically getting Daniel up to speed. NOTHING ABOUT EDUCATION......am I a crappy mom?
I have always assumed that would just come and he'd catch on. And he has. He sorts, he knows his colors, he knows his left from his right (foot) he knows his belly button his eyes his nose.......but he can't talk and he can't get around on his own......
OMG, I think I'm hyperventilating!
Saturday, January 19, 2008
I have gone through many different "stages" of accepting and changing what our life is. Some times I blame myself that Daniel has these disabilities because of something I did wrong during my pregnancy, or because I must have sinned really bad and this is how I have to repent. I have gone the route that its just a mix of Lonnie and I and it just didn't come out "right". I have gone the other route that its just a fluke. And sometimes I come back to its my fault he has to fight these horrible things. I blame myself.
But most of the time, if someone came up to me and said "I can make Daniel "normal" but he won't be like the Daniel you know now." I would tell them to forget it. I accept Daniel. I accept that he is different, and I love him for that. There is no way in any way shape or form that I would change, go back in time, fix, redo.....anything with Daniel. I love him beyond the ends of earth, I love him more that I can imagine loving anyone. And I want him to know how proud I am of him, and how wonderful he is and that I would NEVER trade him for anything.
Now, ask me if I accept how society treats people with disabilities.....and we're into a whole other blog! A blog that will allow me to use colorful language that I can't use here! Do I accept how things are difficult for Daniel?....NO. Will I fight to make sure that he has everything and anything that he needs to succeed? Well, sure I will or I wouldn't' be a good parent. Regardless if he had a disability or not, I would do it.
I want people to treat Daniel as if he is a typical child and not give him special treatment because he is different. I do not want people to pity Daniel or his family. I want them to learn from his struggles (and hopefully this blog is helping).
I believe Daniel is here to bless my life. Yes I have other children and I have learned a tremendous amount from them and I still am. But God gave me a child with special needs because he knew that I needed someone to need me...I needed to learn something...I needed to understand. And I have been blessed........with Daniel.
As he went along, he saw a man blind from birth. His disciples ask him, "Who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."
I guess a little bit of my religous parents rubbed off on me. I knew I loved them for a reason! :)
Thursday, January 17, 2008
Wednesday, January 16, 2008
This morning bright and early we reported to the EEG department at Children's Hospital to get another EEG. (At least this time it was only 30 minutes and not the 24 hour one!)
After the man stopped handling his head and he got use to being taped down to the table and not being able to move his arms, and The Wiggles video on........he was much better. But just let me ask you this question: Would you, as an adult, not cry too if you were taped to a table and couldn't' move?!?! OK then......We came home for Daniel to take a nap and get the goop washed out of his hair. Then we go back to the hospital to see his neurologist and his dietitian today. Cross your fingers and hope the EEG came back clear again, and that Daniel has gained some weight since last month! Gotta fatten this boy up some. Right now he is long and lean.
Check back later today for more updates.
UPDATE: The Test Results Are In...............May I have the Envelope Please..........
AND WE HAVE A WINNER!!!!!!!!!!!!
No seizure activity, no Hypes, no nothing bad!!!!!! An Appointment where NOTHING BAD was discussed!!! We left with an A++++. Lets revisit the last time this happened!!We are going to keep Daniel on the Vigabatrin until the next visit in 4 months and we will discuss weaning at that time.
Oh yeah, and he gained 1.5 lbs since his last weigh in 5 weeks ago! Yay!
Monday, January 14, 2008
To sleep means to dream, to dream means to wake up sad, scared and alone.
I wish I could sleep like I use to. I could sleep, and sleep and sleep and never have a dream, or if I did. I didn't remember them.
Lately, when I am able to sleep (which isn't often, not because I don't have the opportunity, I have insomnia). I am the text book example of it. Depressed, stressed, anxiety (about sleeping), and heck for all I know.....mental illness and/or menopause?!? Anyways, I have this desire to sleep but not to dream. I have this desire to sleep, but I can't, I crave sleep and beg for sleep, but I also am in fear of it. I want to go to bed.......yet I don't. Yes here is that mental illness creeping in.
I am having dreams.
Dreams to me are suppose to be pleasant, nice visions. Mine are to some point,
they are just unrealistic. (Did you know on average a person spends 6 years of their life dreaming?)
Let me say this......I wish that when I dreamt, that I wouldn't remember them. Or that they weren't so vivid, that I wouldn't wake up with a sickening feeling. A feeling of hope, but a feeling of despair. A feeling that is so gut retching, that it makes your whole body ache? A horrible feeling of failure, not being able to do what you're suppose to be able to do.
I have having 2 different reoccurring dreams, the kind that if you can yell at yourself to wake up, you do, but then you fall back asleep right to where you were before you woke up.
I am out walking with Daniel and he is in his push wheelchair, and we're heading towards the park.
There are other kids there, but we stay to the area where they aren't around much as I don't want to be on guard with the eyes trying to figure out what is wrong with Daniel. So I put Daniel in the swing and I'm holding him up and swinging him. Talking to him like I always do, "wanna go higher?" and waiting for his big open mouthed smile and that high pitched squeal. So I push him a little higher........and the giggles. We do this for a few minutes, and I say "ok Daniel, its time to go" and I stop the swing, unbuckle him, pick him up out of the swing and start to walk over the the stroller and he is doing his little leg thrusts which means he wants down. Daniel can't walk but he can stand supported by me. So I put him down in the grass and crouch down next to him still supporting him to show him the grass. I show him the sign for "grass" and "bug", and I say the word as I have him watch me do the sign. He is always watching my mouth when I talk. He wants to talk I can see it in his eyes, but he can't get his brain to tell his mouth what to do. But in my dream today he repeats me. In this most wonderful, little boy voice, this tiny little meek sounding voice......."ug" he says for Bug, and I am excited and I say "yes your right Daniel I love your big boy voice, can you say grass"..."gggggggggggrass", of course the tears are flowing because for whatever wonderful miracle Daniel is talking to me. So of course I want to rush to go home and tell Lonnie and show him what Daniel is doing, and I stand to pick him up and he says "go home now?" with these big brown eyes. And I say "yeah lets go hurry" and he grabs my hand, and starts to walk, with his hand in my hand, holding on with his little fingers around my two fingers, and says "come on hurry hurry, lets go see daddy" and we are running little boy running with his little legs pumping as fast as he can go.
This is where I wake up every time.....at first the feelings is awesome, incredible and any other words like that you can think to describe it. Then reality sets in. If you're reading this blog for the first time, or you don't know Daniel. Let me explain why this dream sucks.
Daniel is a beautiful little boy, who for whatever reason got dealt a really crappy hand for no apparent reason. Maybe its my fault, I don't know, I go back and forth on that issue too. Again, for whatever reason that I can't change even if I made a deal with the devil......Daniel has a brain malformation that is call PMG, and the part of his brain that it affects if the perisylvian area on both sides of his brain. Meaning.......it causes him not to be able to speak, it causes him to have many feeding issues, swallowing issues.....and last but not least Daniel also won the frickin' lottery and has been diagnosed with Spastic Quad CP (meaning Cerebral Palsy that affects all 4 limbs)
That said. Daniel can't talk. Daniel can't walk, and Daniel has a hard time using his arms to hold my hand. So my dream..........is a frickin' nightmare........and I can't stand sleeping anymore.
Dream analysis:............I so badly want my child to be able to do what the other children are doing. I want him to be accepted. People say he doesn't know any differently......these people are lucky that I don't have a gun when they say that. This child is highly intelligent. He knows things, he follows directions, he knows his colors, he can find things......its the frickin' body that he's got. It doesn't want to listen to what his mind I am sure is screaming. I don't want my child to have to struggle.........its not fair. Look at the many pictures on this blog and tell me that he deserves this crap. He doesn't. Not one second of it. If someone is meant to be punished for some sin that happened that I don't even remember or know what it is, it shouldn't be him. He did NOTHING to deserve what he has.
Ok, sorry.........I am done now, I've cried enough for tonight.......until I wake up again....then it will start all over again........."groundhogs day"
Sunday, January 13, 2008
Two of Daniel's cousins are in Australia. Katie is there for a year for school and her brother Brandon went to visit for the holidays. Just wanted to share some of the beautiful photos they have taken while on their trip..... (some of these pictures look like postcards you'd get, they are absolutely beautiful)
Posted by Melanie at 2:54 AM
Friday, January 11, 2008
Baa baa baa baa.....
Or by chance, this sound? http://www.sheep.com/sheep_sounds.cfm
Don't ask me why, but my child is deathly afraid of ANY type of sheep, a sheep shaped toy, a sheep book, a sheep sound, a game with a sheep in it, singing Old McDonald had a sheep. He has never even seen a real sheep. He sees one on television and forget it, the shows over. You read him a book with one on the page and he will flip out. You sing the song or make the noise of a sheep...........STAND BACK! God forbid when he goes to bed to I say anything about "counting sheep!" he'll have nightmares!
In Daniel's mind............Sheep Suck!
Hopefully we never have a field trip and go to a petting farm!
Thursday, January 10, 2008
Today was a monumental day at Daniel's household.
Monday, January 7, 2008
We have had a website for Daniel since the beginning of our "Journey" with Infantile Spasms, through BPP, and onto Spastic Quad Cerebral Palsy. It has either been with Baby Jellybeans, or through Blogger.....but it has been 2 years almost.
2 YEARS of ups and downs
2 YEARS of some really scary things that we learned on the internet
2 YEARS of some really supportive "web friends"
2 YEARS of gathering information and doing hours and hours of research
2 YEARS of intensive therapy on an almost daily basis
2 YEARS of a lot of tears, and
2 Wonderful years of seeing my son thrive beyond what others imagined.
Some people look at us and say "wow, its got to be so difficult".
Yes on some days it is.....but other days its no different than what any other parent does.
So we have to carry Daniel because he can't walk
So we have to feed Daniel because he can't feed himself
But I can almost guarantee you, that if you were able to experience Daniel for just one day, you wouldn't want to give him back either!
I am amazed at how great he is doing, and we have a lot of people to thank for him doing so well.
Therapy.........sheesh, I can't even begin to express how much these people have helped us. Countless hours, therapists that leave their jobs and go home and actually think about things to do with him to help him. They actual go home and research what piece of equipment would be better for him. They have all been godsends to us.
Then, you wouldn't believe where people come from to read Daniel's blog and offer comments and support through the blog and by direct email. Here is just a brief little list of where some of our visitors that keep returning come from:
Saint John, New Brunswick, Canada
Kelty, Fife, United Kingdom
Haderslev, Sonderjylland, Denmark
Munich, Bayern, Germany
London, United Kingdom
Gold Coast, Queensland, Australia
Sydney, New South Wales, Australia
Bangalore, Karanataka, India
Ljubljana, Bohinj, Slovenia
Mangaroa, New Zealand
and of course, if you take a little glance at our map at the lower bottom of the page, you'll see we get people from all over the United States.
The support has been awesome......and I just wanted to let you know we appreciate it all.....
Saturday, January 5, 2008
So have we told you all yet that in May of 2008
Daniel will be taking most of his family to Disney (Florida) for a wonderful week?!
Daniel will be granted a wish through Rainbow Connection.
It has taken us a while to figure out what Daniel would like for his wish.
We were going to get equipment, or more therapies, or a different type of therapy, but we decided that Daniel's life up to this point is always working hard, and doing therapies of some sort.
So we decided that Daniel needed to go have fun and visit Mickey Mouse and all his friends.
I have read about other families that have gone to Disney and stayed at a special place that you can only stay at once in your lifetime and you are only allowed to stay there through a wish program. Its called Give Kids the World....check it out.
Watch us do the countdown on the side bar too ---------> Just for fun!
Friday, January 4, 2008
I can dream for miracles right?
I hope this year is uneventful in the drama area....for everyone in my family....so far that isn't happening but I am still holding out for that miracle that our lives can settle down and become "normal".
Things that I KNOW will happen this year
1) Daniel will get his power wheel chair this month.
2) Daniel will have surgery this month
3) Daniel will be getting his communication device this year.
4) We will be going to Disney (Florida) for one week for Daniel's Rainbow Connection Wish.
Things I am HOPING will happen this year
1) Daniel will be able to sit up independently
2) Daniel will be able to walk with his walker more independently
3) That Daniel will remain seizure free
4) Daniel will be off all seizure medication
Here are a couple pictures from this past week.
What it looks like on the way to therapy after the snow storm. Have I told you before I HATE snow? But it does look pretty doesn't it?
Here is a photo of Daniel trying out the DynaVox.
We get to test it out for two weeks, then we will get the Tango. So far I am very impressed with the different things and the growth potential of the DynaVox. If any reader knows about these devices and wants to give me some information on them, it would be greatly appreciated. I would like to know of other peoples experiences with them....good or bad. Or if you know of other devices.....
January 24th is the day of Daniel's surgery. Pray everything goes right and that him coming out of the anaesthesia doesn't induce seizures. Honestly I can't wait to get the surgery to see if it actually helps with the styes. I am so tired of his eye being crusty and boogery and a huge lump on his eye lid. I am also secretly hoping I don't have to do anymore boogerectomies!!
The only thing is I do have concerns because Daniel already chokes on his saliva because of his BPP (Bilateral Perisylvian Polymicrogyria). I am hoping that when opening up the passage way to give more drainage that this does not increase Daniel's choking. Nothing is quite as exciting as driving down the expressway and seeing your son choke in the car seat and you have to pull over to a dead stop in seconds and whip him out of the car seat and start beating him on the back. Oh yeah, those are the days! The excitement never stops! Talk about getting your heart racing!
Talking about being in the hospital and surgeries and stuff. I read about a little boy, and his parents belong to a yahoo support group that I also belong too. Anyhow, this little boy, Ryan.......is one of the cutest little boys that I have seen around the web! He is very sick right now, so any one who can give the extra prayers and support would be great, and I'd really appreciate it. Ryan has his unfair share of medical issues. So say a little prayer.
Posted by Melanie at 4:57 AM