A couple weeks ago we met a new doctor.
The one that I didn't want to meet.
The one that I wanted to cancel the appointment with all day.
The one that I already hated in my head
The dreaded gastro doctor - Dr. G
Turns out he's kinda cool. :)
Ok maybe cool doesn't describe him well, but I walked out of there finding myself "comfortable" with the information he gave me. Not that I'm saying I am thrilled to get Daniel a feeding tube, but more comfortable with the decision that WHEN it comes time, I'm not confused. I'm not as scared.
But saying that.....the decision is still, we are NOT getting the feeding tube until it is absolutely necessary for Daniel. If he becomes stressed with the eating, or he isn't enjoying the pleasure of eating, or it becomes too much for him in any way. Such as losing weight, continual sickness, hospitalization- Then we will get a feeding tube.
Currently he is 44 inches tall, 43 lbs at 4 1/2 yrs old. Pretty good stats.
Falls in the 50 percentile for weight. Dr. G said he "applauds us" for how well we are doing with the weight, that he walked in thinking we must already have a feeding tube because his weight is so good.
He never said we NEED to have one now, he didn't push us into scheduling it like some doctors tend to do. He simply explained how it was done, the options, and then he said what stuck with me.
Basically in a nutshell he said something like
It's not natural to have a feeding tube, and it sucks to have to get it, and you don't have to use it all the time. Its like an insurance policy...you hate to have the monthly payments, but when it comes in handy, when you really need it, you're thankful you have it.
He spent a lot of time with us, he talked to Daniel too. Answered my endless list of questions and didn't rush us. To me those are good signs of a good doctor.
Showing posts with label Doctor appt. Show all posts
Showing posts with label Doctor appt. Show all posts
Thursday, April 8, 2010
Tuesday, February 3, 2009
West Syndrome, Infantile Spasms, Epileptic Spasms....WTF?
Sigh. Alright last night I typed up a post and kept it in draft mode. I wasn't sure I could explain things well enough, and without the emotions or negativity I was feeling. So this morning I deleted it and will give bullets of what we learned/did without the emotions/negativity.
Feel like I've been kicked in the stomach? Yes repeatedly. Does it suck? Most definitely.
Am I terrified? You bet.
I say I don't want people to look at my son differently because of his diagnosis. I want people to judge Daniel for who he is, not what papers say about him. But I look at him differently too, I look at him with some much love, such an aching heart, scared. I look at his eyes and I see there is life in them, and I see that he knows I love him, that I believe in him. I don't want him to see the fear in my eyes when he does odd movements, when he breathes a little different. But I can't help feeling the fear. I don't want to lose Daniel. Not mentally, not physically, I want him not to lose his abilities that he has fought for. And it terrifies me that I have no control over this. NONE. All I can do it love him, but sometimes that doesn't feel like its enough to protect him. I am suppose to protect him and how can I protect him from something I can't see?
So even though I won a small victory we still have a big one to fight. And it sucks. There are different paths we can take, all of them are scary and leading us down roads I don't want to be on. I want to yell to whoever will listen "HEY, we're lost, we took a wrong turn and shouldn't be in this place, we don't belong, this is not the journey we signed up for!"
Hello, is anyone listening? He does not want or deserve to have this bumpy crappy ass-ed pothole filled road to travel.
OK so I lied, I didn't post without the emotions or the negativity. So shoot me! I tried!
and since I already screwed up the post with emotions for the second time, I might as well top it off:
So to the person who said to me:
"Modern medical literature informs us that there is no evidence of additional brain damage that even severe seizures would bring."
Talk to the specialist that people travel from all around the world to see, I'll send you his phone number and email address. Or better yet, talk to the parents of the children who have IS and who have regressed? Is that not damage enough?
To the person who said to me:
I fully understand your concerns about Daniel's seizures, however lets look at the situation logically, you have to overcome the irrational fear of seizures and understand what they are about."
Yeah, well SUCK IT!
- West Syndrome, Infantile Spasms and Epileptic Spasms are all the same thing. All do the same amount of harm. All suck. This is how it was broken down for me. WS typically has these characteristics: spasms that come in clusters, hyppsarrthmia, regression. Infantile Spasms DO NOT have to have all three, but can have a mixture of them. For instance you can still have IS without having hyppsarrthmia. You can have Infantile Spasms on the EEG but not see them outwardly. Epileptic Spasms are the same thing as Infantile Spasms but because when the person is over a certain age, they now call it Epileptic Spasms. All suck. All have the same potential of robbing your child of what skills he has.
- A VMR is basically two separate things run at the same time- the EEG, and the video. The EEG is run through a detection program on a computer. If certain criteria is seen, it is then flagged for the doctor of the EEG department. Dr. A. This doctor is not our neurologist, he just reads the reports and writes them up. Dr. A is who showed me the video of what he classified as Epileptic Spasms (IS/WS). Based off what he showed me I came home to research.
- There are types of seizures that can be induced by certain things, ie: flashing lights.
- As I stated in a prior post, the movement Dr. A showed me and called ES were something that Daniel has ALWAYS done. So to prove that I knew what I was talking about and to prove to Dr. A and Dr. C that the report was wrong, we induced this "spasm" and video taped it to show them yesterday. I had all the past reports and did my comparisons/said my whole spiel, showed my video, fought my fight. He listened to everything and let me say what I wanted, and when he first watched the video that we made, he said "sure looks like a spasms". I explained that watch longer, listen to the sound, you can hear me tell you that we are bringing balloons into the room, when Daniel will see them he will do this movement repeatedly, and yes they look like spasms, but we are controlling it, we start it and the minute we remove the balloons Daniel is fine, no more movements. He agreed...if we could make it happen and control it like that it was NOT a seizure. Looks like it, but is not. What we learned, don't judge a book by its cover. So I had a moment of glory. I proved Dr. A wrong.
- Dr C. listened to me, listened to my explanation then proceeded to say in the nicest way possible; "regardless of what the video says, the EEG doesn't lie. We are not seeing correlation with the times you pressed the button so no, those aren't seizures, but he is indeed having epileptic spasms in clusters but they are just not manifesting in an outward fashion for us to see. As much as I think he wanted to tell me they weren't seizures, he did it in the nicest way possible. And he listened to me. He answered all my questions, explained our options, and gave me the time. I might not have liked what he said, but he took the time to explain in a way that I could understand, wrap my arms around. So I don't like what he has to say, but I trust him in the fact that he knows what he is doing and he is looking out for my child. He cares.
Feel like I've been kicked in the stomach? Yes repeatedly. Does it suck? Most definitely.
Am I terrified? You bet.
I say I don't want people to look at my son differently because of his diagnosis. I want people to judge Daniel for who he is, not what papers say about him. But I look at him differently too, I look at him with some much love, such an aching heart, scared. I look at his eyes and I see there is life in them, and I see that he knows I love him, that I believe in him. I don't want him to see the fear in my eyes when he does odd movements, when he breathes a little different. But I can't help feeling the fear. I don't want to lose Daniel. Not mentally, not physically, I want him not to lose his abilities that he has fought for. And it terrifies me that I have no control over this. NONE. All I can do it love him, but sometimes that doesn't feel like its enough to protect him. I am suppose to protect him and how can I protect him from something I can't see?
So even though I won a small victory we still have a big one to fight. And it sucks. There are different paths we can take, all of them are scary and leading us down roads I don't want to be on. I want to yell to whoever will listen "HEY, we're lost, we took a wrong turn and shouldn't be in this place, we don't belong, this is not the journey we signed up for!"
Hello, is anyone listening? He does not want or deserve to have this bumpy crappy ass-ed pothole filled road to travel.
OK so I lied, I didn't post without the emotions or the negativity. So shoot me! I tried!
and since I already screwed up the post with emotions for the second time, I might as well top it off:
So to the person who said to me:
"Modern medical literature informs us that there is no evidence of additional brain damage that even severe seizures would bring."
Talk to the specialist that people travel from all around the world to see, I'll send you his phone number and email address. Or better yet, talk to the parents of the children who have IS and who have regressed? Is that not damage enough?
To the person who said to me:
I fully understand your concerns about Daniel's seizures, however lets look at the situation logically, you have to overcome the irrational fear of seizures and understand what they are about."
Yeah, well SUCK IT!
Sunday, June 1, 2008
Finally Warmer Weather!
Yesterday we had some warm weather, and we were outside putting up the pool. Daniel wanted to participate also, so he got to make sure the hose worked properly!!!
I just love the above picture, he looks so grown up doesn't he? So serious.
Here is my pathetic excuse of making a tent! Remember, I have add 4 girls and Daniel is my first boy......I'm still getting use to doing the boy things....playing with cars & trucks, looking for bugs, making tents, playing in dirt! LOL and you can tell the tent skills are WAY off, and to boot I used a PINK, girly girl sheet!
It was so cool to see Daniel being able to get through the sprinkler by himself. Last year, I made Victoria run through the sprinkler with Daniel and he loved it. (I'll have to dig up the funny picture from last year and post it, we'll get a laugh from it again!) This year, put him in his gait trainer and let him go!! WARNING: THIS PROBABLY ISN'T THE GREATEST FOR THE GAIT TRAINER!!!
But this is Daniel's freedom and I want him to be able to experience these things on his own. He was doing his high pitched excited squealing! Which is really really LOUD! Can't wait til he is able to get in the pool, the neighbors will be wondering what all the noise is about!!
I just love the above picture, he looks so grown up doesn't he? So serious.
Here is my pathetic excuse of making a tent! Remember, I have add 4 girls and Daniel is my first boy......I'm still getting use to doing the boy things....playing with cars & trucks, looking for bugs, making tents, playing in dirt! LOL and you can tell the tent skills are WAY off, and to boot I used a PINK, girly girl sheet! OOOOH YEAH!! I almost forgot, lets get to the really good stuff. Daniel went to the neurologists last week for his routine check up and his doctor said that we have pretty much done everything he can for Daniel. (I know this probably doesn't read right, but its a good thing!) What he said was that Daniel is doing so well, and he is doing all his therapies and basically has his equipment and is all set. The only thing we need to do is schedule an VEP and an ERG. Then once those are done and his EEG is good that we will start weening Daniel OFF his anti-seizure medication. Everyone do the happy dance with me??!~ I do this with a little hesitation because I'm always afraid to screw with something when things are going good!! But to have him off medicine......that he has been taking for years, is an awesome thought. No side effects, no making it harder for him to pay attention, just a clear clean drug free life!!!
Then in his speech/augmentative therapy, his therapist is training in VitalStim. This is hopefully to improve the muscles in Daniels throat (throat, tongue, cheeks,mouth) and will help with his swallowing. It will also help with speech in the long run. So BONUS!! I had her attack the electrodes to me first before she even touched with Daniel. If its going to hurt him or scare him, I wasn't sure we were going to start it right now. But actually its just a little weird, it starts off really low and it basically feels like a tingle on the skin, then as it is ramping up you kind of feel like there are little ants running on your throat and then all of a sudden you get this sensation and you have to swallow. Hence...swallow therapy. We did this on Daniel and you could see in his eyes when he could start to feel it, but could tell he wasn't uncomfortable. As soon as Daniel put the spoon up to his mouth and put the food into his mouth, she started Daniel's "tickle machine" and you could SEE him swallow, you could hear him "swallow" and after checking his mouth.....everything was gone. Everything was swallowed in ONE swallow. AMAZING!!
Now for the crappy news: We have been trying for the past 9 months to get approval for Daniel to get the Mygo. Well they won't order the Mygo for Daniel until we get prior approval. Our secondary insurance keeps coming back every couple of months saying, well we need this or that and then our Rep sends it in and then you're back in line at the end of the line. You lost your place, and you're at the end of the line. Well this time they came back with what I will have to classify as the stupidest, I mean the utmost stupidest remark that we now have to come back with an answer and wait at the back of the frickin' line again.
Here is the comment: The Mygo feeding system specs that was sent in states that this system is for children ages 4-12, said recipient is only 30 months or so. Please provide information as to why the child would need this. Information must come from doctor that wrote medical need of necessity.
OK, if I were in front of them, I would have a few choice words. It would have started with: are you really that dumb? How about the fact that if you go to the next line, you'll see that the height requirements for this seat are what? there you go......Daniel is tall for his age. He was frickin' FITTED for the seat 9 months ago and we got this seat because the seat that is the next size down does not fit him for his height anymore. And when we started this process he was only an inch away from the Mygo and we knew that by the time you butt munches got around to approving it he would have grown?! Which he did! Hell by the time you get to approving this he will be FOUR frickin' years old!! (he is only 2 1/2 yrs old right now!)
OUTRAGE........I could not believe it. His doctor was equally upset about it and said that he was writing a letter and going to say something along the lines of..."Gee I hope that this child doesn't aspirate (choke) or anything of that nature and that the parents then don't turn around and sue you because of your lack of intelligence in this matter. Daniel has failed a modified swallow and urgently needs this piece of equipment. Currently he sits on his mothers lap to eat because he does not have adequate support which would have been provided had he gotten timely approval for equipment request over 9 months ago!
He was also going to ask that Daniel NOT be put at the end of the line and that immediate review be given. So we shall see where that gets us!
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.
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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.
____________________________________________________________
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.
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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.
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