Have you ever had one of those moments when you're fine and the next you feel like you just got run over by a huge semi truck?
I was just checking the websites that I beong to and there is a little boy who is getting HBOT, he has CP, I am putting the link in here for those who would like to
Not even 2 minutes into this video, I am watching Daniel.......this child moves just like Daniel, and I have lost it. I can't get anyone to say Ok, try the HBOT, all the doctors say NO because its not approved. I REALIZE ITS NOT APPROVED but who is to say it won't work?!?!? (just so you all kow his medicine he takes 2x a day isn't approved either but we're doing that and it works!) It just sucks. And even if we could find some place to take Daniel for this, it would tak e even last dime he made with his first fundraiser plus more. All that money for one form of therapy, but if it works.its worth it, and then there is the pressure that if it didnt' work we just threw that money away.
It is just not fair, this whole crap is just not fair. We shoudl be able to wake up in the mornings and think ooh, lets go to the park and Daniel can run around and play, or lets take Daniel to his swimming lessons, or his play group where he can play with kids his age. But NO, we have to get up look at our schedule book and see how many therapy sessions we have that day, schedule out his naps, when he'll be able to eat in between, or if he'll have to power nap in between two therapies. It just is overwhelming, waking up scared that the twitch Daniel just made.......OH CRAP is that a seizure? or Daniel staring off.....Oh CRAP is that a seizure, or if he is going to asperate, will I be able to help him?
this crap is just not fair
So on a serious note and plea: if you know of anyone who would like to be a "sponsor" for Daniel to get HBOT? A sponsor is someone who basically helps put Daniel through this therapy, generally a business or whatever......send'em our way.
I strongly believe that Daniel would benefit so much from this, and it kills me that we aren't able to get it together. He is young and when you are young it is the best time. I feel like time is just slipping past and we're missing our opportunities.
Monday, March 26, 2007
Thursday, March 1, 2007
March entries
March 26-
Today is the first week this month that we aren't jam packed the whole week. This week we just have our normal routine of therapies.
The new medicine seems to be working really well. He gets a 1/2 pill 3x a day and no more drool. Now we just have to watch for any side effects. Its so difficult sometimes, one of the side effects is blurred vision.........now how am I suppose to know if he has blurred vision??
This weekend we went to Aunt Karries to celebrate Uncle Marty's (Chic) birthday.
Happy Birthday Uncle Chic
Lets see, we also have an appointment on the 13th to go to Grand rapids to look at a school that they have there called Conductive Learning Center http://www.aquinas.edu/clc/ this is something we've been looking into but its going to take a lot of organizing. IF we are able to work it out Daniel and I (I being Melanie) would be living in Grand Rapids for 4-5 weeks while Daniel attends speial classes. I have heard great things about this program. This would be one of the first things that we would be spending Daniels fundraising money on. He wouldn't be able to go without these monies as none of it is covered by any of our insurances. I am excited about it and hope that we can get all the arrangements settled. We will have to coordinate CLC and the Ronald McDonald housing at the same time. There is a Ronald house close to the center but they only allow so many parents from this program to stay there at one time. You have to get on a waiting list at both locations. Wish us luck.
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March 22 - New Meds
Daniel started his new medicine today that is suppose to help dry up his mouth so that he doesnt' drool as much....there are some side effects we have to watch for, but today seemed to go well.
It actually looks like it might help. He looks like such a grown up boy without the spittal on his chin. Where'd my baby go?!?!
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March 17 - Comes in Like A Lion
Wow, when they say March comes in like a lion and goes out like a lamb, in our case they aren't kidding. This month has just been a continous rollercoaster of activities. I am glad these first two weeks are over. I think we've made our rounds to just about every doctor on Daniel's list plus a few new ones. It seems we are on a 3 month rotation with all of them and they all got schedule right around the same time! between all the doctors appointments and juggling the Early Intervention and Physical, Occupational and Speech therapy...we are ready for a vacation.
Oh what would we wish for if a genie popped out of a bottle....well besides the obvious of make Daniel all well, a vacation! wouldnt' that be nice, just a few days away without anything to worry about, no "oops we'll have to reschedule that", or "oops, we missed that one too" Just some time to go away and be a "regular" family. Enjoy that we have younger kids and a baby. So time to just let them be kids and play, not have a strict schedule. Oh what a dream!
DANIEL'S 2ND FUNDRAISER IS COMING UP ON APRIL 20TH. IF YOU'RE INTERESTED IN COMING OUT TO HAVE A GOOD TIME WITH BOWLING, ITS $20 TO GET IN AND THAT INCLUDES 3 GAMES AND SHOES. WHAT A DEAL!! I CAN'T GIVE YOU MUCH MORE DETAILS THAN THAT BUT CAN LEAD YOU TO THE RIGHT PERSON TO ANSWER YOUR QUESTIONS. tHIS FUNDRAISER LONNIE AND I ARE TOLD TO SIT BACK AND RELAX THAT WE ARENT' TO DO ANYTHING. SO THAT IS WHAT WE ARE DOING, THIS IS BEING HANDLED BY DANIEL'S UNCLE MARTY (CHIC) AND HIS FRIEND NICOLE. I WILL TELL YOU THAT LANES ARE LIMITED AND WE CAN ONLY HAVE SO MANY BOWLERS SO BUY YOUR TICKETS EARLY!
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March 16th - PET SCAN
enough said!
We are still trying to recoup after this days ordeal. We will post later!
kisses to my poor Daniel.
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March 15th -
Here is the technical stuff about what they will be doing to Daniel: He will get an IV that will be put in for the injection of the radioactive tracer (Leucine). The leucine is an amino acid that is found in many foods that we eat every day, and there are no side effects by injecting this into the body. They will either use an arterial or venous catherer to collect blood samples during the scan. Approximately 3-18 small blood samples will be collected over the scanning period. After the catheters are inserted, Daniel will be sedated (because he is unable to remain still for the scanning time.)The radioactive tracer will be injected through one of the IV's and the scanner will take pictures of Daniel's brain and heart for one hour. THE POSSIBLE BENEFITS: the possible benefits of participating in this study is to determine which part of Daniel's bain is making more protein and reorganizing itself after the brain damage (from seizures) was done
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March 10th- Oh Yeah I forgot!
I forgot to mention that Dr. Alpiner said Daniel was doing well and to come back in 3 months. We'll just put that on our rotation. We also got a script for thera-togs (http://www.theratogs.com/faq.html) I have attached the link just incase anyone wants to know exactly WHAT THE HECK theratogs are!
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March 9th - Children's Hospital
Today we had a test before the big PET scan test which is schedule for next Friday. Today was our slow day, a day to get caught up on stuff aroudn the house. Has anyone ever seen a child get the hiccups at least 6 times in one day??? Why is that??? If you know let me know.
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March 8th - happy Birthday
HAPPY 2nd BIRTHDAY DREW ONYX!!
Yet another busy busy day. Today Cousin Blair came to Daniel’s therapy to see what they do to him. He’s such a good little boy, and a show off
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March 7th - Look Ma New Teeth!
I take it back…..yesterday was not the longest day of my life, that would have been the 50 minutes we spent sitting in the waiting room at the dentist office waiting for them to get done working on Daniel’s mouth. We got there at 8:15 and they gave Daniel the choral hydrate stuff to relax him, then they dropped the bomb on me. They were going to wait 15 minutes for Daniel to “relax” then THEY were going to take him to the back and strap him down, swaddle as they called it. Now when I hear swaddle, its suppose to be a comforting thing, not being strapped in so you can’t move. Why do they lie and say “swaddle” (a comforting kind of word) when they really mean, we’re going to restrain the child by strapping his arms to his side and putting this tight fabric all around so they can’t move……..oh but, “it is very colorful, and they like to see the pretty colors”. Oh yeah, Daniel will see those pretty colors through his tightly closed eyes as he is screaming because he can’t move and oh yeah, you’re got your big ass hair hand shoved in his mouth for 50 minutes! Oh yes, and by the way…….its with strangers around cause the parents can’t be in the room. WHAT DID YOU JUST SAY!?!?! Panic sets in, my eyes start darting around to Lonnie, Daniel, Lonnie, Daniel, Dr. Tracht, the nurse, Daniel, Lonnie, Daniel, the doorway, the Dr. standing in the door way, Daniel, OH GOD!!!!! Anyhow, they take my baby away……who do you think is most traumatized by this whole thing? Mom or Daniel? Exactly 50 minutes later out comes the nurse carrying my little Daniel with his blue balloon he got for being a good boy. His face all swollen and puffy, his eyes puffy from crying and his body all sweaty, but he had all his teeth fixed on the top (3 fillings) and a baby root canal on the front tooth. They are all the same size now, and white! And now he can chew without them hurting and boy can he bite now!!! Now I will put this disclaimer out there. The doctors’ office was very nice and everyone was very kind and No one was harmed in the fixing of Daniel’s teeth except his mom but she will survive also!
After the dentist office Daniel passed out so we went to visit with Aunt Mary and Cousin Katie who were up from Ohio visiting Grandma. While we were there Daniel got this HUGE gross blister on his lower lip….PANIC (I am sure a worry wart!) He apparently bit his lower lip a few times and it was all bloody and yucky. Just some baby motrin and he is all right now.
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March 6th
PHEW!! That was an extremely L O N G day! After 2 therapies right in a row, our third therapist decided to give Daniel a “rested” therapy. She put the thera- togs on Daniel and let him use his arms in the foam. Boy did the giggles begin then……..and oh what a mess. Thank goodness its just soap and a dip in the tub when we got home and all was well again!
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March 5th
Here we are at the beginning of what looks to be a very busy week! And I have to say, I’m not ready for it!! Just to give you an example of what is to come up. On Monday (today) Daniel has therapy at 2:00-3:00, then we have to speed demon it over to mom’s doctors appointment. Now we’ll move on to Tuesday schedule (this ones a fun one) we are driving Alexandra (sister) to a doctors appt that is from 8:30-10:00, then to OT at noon, then 1:00-2:00 is Speech Therapy and 3:00- 4:00 is PT. Wednesday is Daniel’s dental appointment at 8:15 a.m. UUUGH this is so early when you have a child that doesn’t want to sleep through the night, and when you have that combination with an OLD mom…its difficult. Thursday… We have our PT at 9:00- 10:00 with Carol, then 4:00- 5:00, Friday… we have our neuro research at Children’s hospital.
_________________________________________________________
Today is the first week this month that we aren't jam packed the whole week. This week we just have our normal routine of therapies.
The new medicine seems to be working really well. He gets a 1/2 pill 3x a day and no more drool. Now we just have to watch for any side effects. Its so difficult sometimes, one of the side effects is blurred vision.........now how am I suppose to know if he has blurred vision??
This weekend we went to Aunt Karries to celebrate Uncle Marty's (Chic) birthday.
Happy Birthday Uncle Chic
Lets see, we also have an appointment on the 13th to go to Grand rapids to look at a school that they have there called Conductive Learning Center http://www.aquinas.edu/clc/ this is something we've been looking into but its going to take a lot of organizing. IF we are able to work it out Daniel and I (I being Melanie) would be living in Grand Rapids for 4-5 weeks while Daniel attends speial classes. I have heard great things about this program. This would be one of the first things that we would be spending Daniels fundraising money on. He wouldn't be able to go without these monies as none of it is covered by any of our insurances. I am excited about it and hope that we can get all the arrangements settled. We will have to coordinate CLC and the Ronald McDonald housing at the same time. There is a Ronald house close to the center but they only allow so many parents from this program to stay there at one time. You have to get on a waiting list at both locations. Wish us luck.
________________________________________________________________
March 22 - New Meds
Daniel started his new medicine today that is suppose to help dry up his mouth so that he doesnt' drool as much....there are some side effects we have to watch for, but today seemed to go well.
It actually looks like it might help. He looks like such a grown up boy without the spittal on his chin. Where'd my baby go?!?!
_______________________________________________________________
March 17 - Comes in Like A Lion
Wow, when they say March comes in like a lion and goes out like a lamb, in our case they aren't kidding. This month has just been a continous rollercoaster of activities. I am glad these first two weeks are over. I think we've made our rounds to just about every doctor on Daniel's list plus a few new ones. It seems we are on a 3 month rotation with all of them and they all got schedule right around the same time! between all the doctors appointments and juggling the Early Intervention and Physical, Occupational and Speech therapy...we are ready for a vacation.
Oh what would we wish for if a genie popped out of a bottle....well besides the obvious of make Daniel all well, a vacation! wouldnt' that be nice, just a few days away without anything to worry about, no "oops we'll have to reschedule that", or "oops, we missed that one too" Just some time to go away and be a "regular" family. Enjoy that we have younger kids and a baby. So time to just let them be kids and play, not have a strict schedule. Oh what a dream!
DANIEL'S 2ND FUNDRAISER IS COMING UP ON APRIL 20TH. IF YOU'RE INTERESTED IN COMING OUT TO HAVE A GOOD TIME WITH BOWLING, ITS $20 TO GET IN AND THAT INCLUDES 3 GAMES AND SHOES. WHAT A DEAL!! I CAN'T GIVE YOU MUCH MORE DETAILS THAN THAT BUT CAN LEAD YOU TO THE RIGHT PERSON TO ANSWER YOUR QUESTIONS. tHIS FUNDRAISER LONNIE AND I ARE TOLD TO SIT BACK AND RELAX THAT WE ARENT' TO DO ANYTHING. SO THAT IS WHAT WE ARE DOING, THIS IS BEING HANDLED BY DANIEL'S UNCLE MARTY (CHIC) AND HIS FRIEND NICOLE. I WILL TELL YOU THAT LANES ARE LIMITED AND WE CAN ONLY HAVE SO MANY BOWLERS SO BUY YOUR TICKETS EARLY!
_____________________________________________________________
March 16th - PET SCAN
enough said!
We are still trying to recoup after this days ordeal. We will post later!
kisses to my poor Daniel.
____________________________________________________________
March 15th -
Here is the technical stuff about what they will be doing to Daniel: He will get an IV that will be put in for the injection of the radioactive tracer (Leucine). The leucine is an amino acid that is found in many foods that we eat every day, and there are no side effects by injecting this into the body. They will either use an arterial or venous catherer to collect blood samples during the scan. Approximately 3-18 small blood samples will be collected over the scanning period. After the catheters are inserted, Daniel will be sedated (because he is unable to remain still for the scanning time.)The radioactive tracer will be injected through one of the IV's and the scanner will take pictures of Daniel's brain and heart for one hour. THE POSSIBLE BENEFITS: the possible benefits of participating in this study is to determine which part of Daniel's bain is making more protein and reorganizing itself after the brain damage (from seizures) was done
____________________________________________________________
March 10th- Oh Yeah I forgot!
I forgot to mention that Dr. Alpiner said Daniel was doing well and to come back in 3 months. We'll just put that on our rotation. We also got a script for thera-togs (http://www.theratogs.com/faq.html) I have attached the link just incase anyone wants to know exactly WHAT THE HECK theratogs are!
___________________________________________________________
March 9th - Children's Hospital
Today we had a test before the big PET scan test which is schedule for next Friday. Today was our slow day, a day to get caught up on stuff aroudn the house. Has anyone ever seen a child get the hiccups at least 6 times in one day??? Why is that??? If you know let me know.
___________________________________________________________
March 8th - happy Birthday
HAPPY 2nd BIRTHDAY DREW ONYX!!
Yet another busy busy day. Today Cousin Blair came to Daniel’s therapy to see what they do to him. He’s such a good little boy, and a show off
___________________________________________________________
March 7th - Look Ma New Teeth!
I take it back…..yesterday was not the longest day of my life, that would have been the 50 minutes we spent sitting in the waiting room at the dentist office waiting for them to get done working on Daniel’s mouth. We got there at 8:15 and they gave Daniel the choral hydrate stuff to relax him, then they dropped the bomb on me. They were going to wait 15 minutes for Daniel to “relax” then THEY were going to take him to the back and strap him down, swaddle as they called it. Now when I hear swaddle, its suppose to be a comforting thing, not being strapped in so you can’t move. Why do they lie and say “swaddle” (a comforting kind of word) when they really mean, we’re going to restrain the child by strapping his arms to his side and putting this tight fabric all around so they can’t move……..oh but, “it is very colorful, and they like to see the pretty colors”. Oh yeah, Daniel will see those pretty colors through his tightly closed eyes as he is screaming because he can’t move and oh yeah, you’re got your big ass hair hand shoved in his mouth for 50 minutes! Oh yes, and by the way…….its with strangers around cause the parents can’t be in the room. WHAT DID YOU JUST SAY!?!?! Panic sets in, my eyes start darting around to Lonnie, Daniel, Lonnie, Daniel, Dr. Tracht, the nurse, Daniel, Lonnie, Daniel, the doorway, the Dr. standing in the door way, Daniel, OH GOD!!!!! Anyhow, they take my baby away……who do you think is most traumatized by this whole thing? Mom or Daniel? Exactly 50 minutes later out comes the nurse carrying my little Daniel with his blue balloon he got for being a good boy. His face all swollen and puffy, his eyes puffy from crying and his body all sweaty, but he had all his teeth fixed on the top (3 fillings) and a baby root canal on the front tooth. They are all the same size now, and white! And now he can chew without them hurting and boy can he bite now!!! Now I will put this disclaimer out there. The doctors’ office was very nice and everyone was very kind and No one was harmed in the fixing of Daniel’s teeth except his mom but she will survive also!
After the dentist office Daniel passed out so we went to visit with Aunt Mary and Cousin Katie who were up from Ohio visiting Grandma. While we were there Daniel got this HUGE gross blister on his lower lip….PANIC (I am sure a worry wart!) He apparently bit his lower lip a few times and it was all bloody and yucky. Just some baby motrin and he is all right now.
__________________________________________________________
March 6th
PHEW!! That was an extremely L O N G day! After 2 therapies right in a row, our third therapist decided to give Daniel a “rested” therapy. She put the thera- togs on Daniel and let him use his arms in the foam. Boy did the giggles begin then……..and oh what a mess. Thank goodness its just soap and a dip in the tub when we got home and all was well again!
__________________________________________________________
March 5th
Here we are at the beginning of what looks to be a very busy week! And I have to say, I’m not ready for it!! Just to give you an example of what is to come up. On Monday (today) Daniel has therapy at 2:00-3:00, then we have to speed demon it over to mom’s doctors appointment. Now we’ll move on to Tuesday schedule (this ones a fun one) we are driving Alexandra (sister) to a doctors appt that is from 8:30-10:00, then to OT at noon, then 1:00-2:00 is Speech Therapy and 3:00- 4:00 is PT. Wednesday is Daniel’s dental appointment at 8:15 a.m. UUUGH this is so early when you have a child that doesn’t want to sleep through the night, and when you have that combination with an OLD mom…its difficult. Thursday… We have our PT at 9:00- 10:00 with Carol, then 4:00- 5:00, Friday… we have our neuro research at Children’s hospital.
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