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
Guelp, Ontario
Austin, Texas
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.....
xoxo-
Us.
Monday, January 7, 2008
Saturday, January 5, 2008
We're Doing A Countdown
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!
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!
The New....The Improved!
Over the next week or so we will be changing Daniel's website around. So if you come and things look all messed up, that is us trying to improve the way the blog looks.
If you have a link on our site to yours...please check the link to make sure it goes to your homepage or the page you would prefer new visitors to visit first. If its wrong or if it doesn't work, send me an email and I'll fix it right away.
If you have a link on your site to Daniel's site, can you please double check that your link works because Daniel's address (www....) is going to be changing soon and I want to make sure that we can keep every ones site working correctly. So again, please do me a favor and check your site to make sure Daniel's link works, we like your traffic and visitors!!! :)
If there is anyone out there that knows how to make a really cool graphic or taking a picture of Daniel and putting it on the header let me know. I love the one that Moo has on his website.....check it out at Terrible Palsy. Its different than most and very original (I think!) I also like the coloring and picture (although it doesn't fit Daniel) on Dura Mater also.
I want NEW and IMPROVED!!!!
Friday, January 4, 2008
What Will This Year Bring?
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?
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.....
Surgeries
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.
thank you.
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.
thank you.
Monday, December 31, 2007
O'where O'where can my little Daniel be......
Well, you know that you're not exciting anymore and you are not "HIP" when at 9:45 p.m. your spouse is sleeping in bed cause he fell asleep when he was putting the littlest one down to sleep.
AND, the baby is still awake sitting on your lap. (I would post the picture that I took of said husband sleeping, but I would get killed, and that is a bad way to start off the new year!)
You also know your not "hip" anymore when you are playing hide and seek with your 14 year old daughter who is helping my 2 year old son hide in the "best est" spot ever at 10:00 p.m.
See if you can find Daniel....
.
Do you see Daniel hiding in all of my left over fabric from quilting?!? Now this is the only time that Daniel can't contain his excitement and its very easy to find him. All I have to do is say "O'Where, O'Where is Daniel??? Daniel where are you???" and instant giggles.........leads me right to where he is hiding!
Oh the excitement of New Years Eve!
Here is another photo we took today..........Father and Son.........can you tell?!?!
Well, I hope everyone had a Safe and Happy New Year.
Sunday, December 30, 2007
Our Visit with the ENT and Our Run Around...
So we had our first visit with the ENT earlier this week, needless to say, I didn't leave with a "happy happy joy joy" feeling.
Basically I feel we are getting the run around. Lets go back a couple months ago.
We went to the pediatrician because Daniel kept getting styes in his eye.
Obviously he didn't complain much about it, but they were driving me nuts. It would be there, the next day gone, the next day its back but BIGGER. Then he started to get one on his eyelid, a huge looking bump UNDER the eyelid. I wanted some medicine to get rid of them. She simply said put a warm compress on his eye and it would work itself out, but perhaps we needed to see the eye doctor because maybe he needed his tear ducts probed.
So step two, we get a new eye doctor, as our original eye doctor is older and I didn't feel comfortable with shaky hands probing anything on Daniel. (Read more about that here) So we get a new eye doctor, the eye appointment went fine (besides a few screams), his vision is OK and not affected by the Vigabatrin. When we asked about the styes (they were big at the time), he said well before I would go in and get the probing of the tear ducts, and the removal of the sty (cyst), I would like an ENT to see him to make sure that its not his sinus that is blocking anything and up into the eyes. Cause he felt that if that were the case that once that was cleared up the eyes would clear up. FOR THE LOVE OF GOD.........WILL SOMEONE PLEASE JUST HELP ME FIGURE OUT WHAT IS WRONG WITH MY CHILD'S EYES AND WHY IS HE GETTING THESE FLIPPIN' STYES SO MUCH.
So, next step we find a pediatric ENT. She was very nice and after our 3 hour appointment and getting x-rays and asking a bunch of questions, Daniel's adenoids are large and need to get removed. This is causing all the boogerectomies that we have written about. From the picture of the x-ray, she said that Daniel's airway and drainage isn't really happening because there is a very very very small (Did I tell you it was small) passage. And with all the boogers he is getting, it is apparent that there can be no drainage like the average person. Apparently he also has fluid behind his one ear (although he has never cried or complained of an ear hurting. In fact he has never had an ear infection his whole life!) The doctor said that with the fluid behind his ear it would give him the feeling of descending in a plane and 20-30% of hearing loss in that ear. WHAT??? This kid turns when you drop a needle on a cotton ball! OK, so anyways back onto the subject....
Daniel will be having surgery in January 2008. Welcomes in the new year nicely don't' you think?! BUT she doesn't' think that the styes are associated with the adenoids.......and that when she has Daniel knocked out for the sinus surgery, that perhaps the eye doctor would like to come in at the same time and do the tear duct probing and sty/cyst removal. Well wouldn't that work out nicely? Get it all done at once?? Well that would be too damn easy wouldn't it?
Seems the ENT only does surgery on Thursdays and the Eye doctor that we went to is out of a different hospital so he can't do the eye surgery and the second eye doctor that was recommended to us that works out of the same hospital as the ENT, oh, well we're sorry but he doesn't do surgery on Thursdays, he only does them on the 5th Wednesday of the month in the year 2012, and maybe there is another ENT that could do it on that day? What do you think!?!?! So forget it. Daniel is getting his adenoids removed, and hopefully we will see if that will clear up the styes, and if not, then we will have to go the the eye doctor and say well you're thoughts weren't correct so, lets knock my child out again and do the eye surgery.
%Y$&%H$*&# I just want to scream sometimes.
Why can nothing be easy?
Basically I feel we are getting the run around. Lets go back a couple months ago.
We went to the pediatrician because Daniel kept getting styes in his eye.
Obviously he didn't complain much about it, but they were driving me nuts. It would be there, the next day gone, the next day its back but BIGGER. Then he started to get one on his eyelid, a huge looking bump UNDER the eyelid. I wanted some medicine to get rid of them. She simply said put a warm compress on his eye and it would work itself out, but perhaps we needed to see the eye doctor because maybe he needed his tear ducts probed.
So step two, we get a new eye doctor, as our original eye doctor is older and I didn't feel comfortable with shaky hands probing anything on Daniel. (Read more about that here) So we get a new eye doctor, the eye appointment went fine (besides a few screams), his vision is OK and not affected by the Vigabatrin. When we asked about the styes (they were big at the time), he said well before I would go in and get the probing of the tear ducts, and the removal of the sty (cyst), I would like an ENT to see him to make sure that its not his sinus that is blocking anything and up into the eyes. Cause he felt that if that were the case that once that was cleared up the eyes would clear up. FOR THE LOVE OF GOD.........WILL SOMEONE PLEASE JUST HELP ME FIGURE OUT WHAT IS WRONG WITH MY CHILD'S EYES AND WHY IS HE GETTING THESE FLIPPIN' STYES SO MUCH.
So, next step we find a pediatric ENT. She was very nice and after our 3 hour appointment and getting x-rays and asking a bunch of questions, Daniel's adenoids are large and need to get removed. This is causing all the boogerectomies that we have written about. From the picture of the x-ray, she said that Daniel's airway and drainage isn't really happening because there is a very very very small (Did I tell you it was small) passage. And with all the boogers he is getting, it is apparent that there can be no drainage like the average person. Apparently he also has fluid behind his one ear (although he has never cried or complained of an ear hurting. In fact he has never had an ear infection his whole life!) The doctor said that with the fluid behind his ear it would give him the feeling of descending in a plane and 20-30% of hearing loss in that ear. WHAT??? This kid turns when you drop a needle on a cotton ball! OK, so anyways back onto the subject....
Daniel will be having surgery in January 2008. Welcomes in the new year nicely don't' you think?! BUT she doesn't' think that the styes are associated with the adenoids.......and that when she has Daniel knocked out for the sinus surgery, that perhaps the eye doctor would like to come in at the same time and do the tear duct probing and sty/cyst removal. Well wouldn't that work out nicely? Get it all done at once?? Well that would be too damn easy wouldn't it?
Seems the ENT only does surgery on Thursdays and the Eye doctor that we went to is out of a different hospital so he can't do the eye surgery and the second eye doctor that was recommended to us that works out of the same hospital as the ENT, oh, well we're sorry but he doesn't do surgery on Thursdays, he only does them on the 5th Wednesday of the month in the year 2012, and maybe there is another ENT that could do it on that day? What do you think!?!?! So forget it. Daniel is getting his adenoids removed, and hopefully we will see if that will clear up the styes, and if not, then we will have to go the the eye doctor and say well you're thoughts weren't correct so, lets knock my child out again and do the eye surgery.
%Y$&%H$*&# I just want to scream sometimes.
Why can nothing be easy?
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