I've been sitting here watching Aidan while he sleeps on the couch. He's finally calmed down from being upset earlier this evening and he looks peaceful. I've been looking at pictures of him from a year ago- right before I had Evan. It is so amazing to me that it's only been a year. It feels like a lifetime ago. Aidan has lost that babyish look about him and is starting to look like a little boy instead of my baby.
I'd give anything in the world to go back a year and redo everything if I knew I could prevent this outcome. I'd give anything to go back to the days of chasing him around and taking him to the zoo, all while being 9 months pregnant. I'd do it all over again in a heartbeat. I wouldn't have uprooted our family and I would watch him like a hawk and keep him right beside of me.
I know I'm being irrational. I just miss the way things used to be. I never thought I was happy before, but I was. I am so blessed to have these two baby boys. I love them more than anything in the world and I'd give up my own life to give Aidan a future-a normal future.
I didn't mean to turn this into a sob-fest. So..... We probably won't have any results from his MRI until Monday or Tuesday. We have an appointment with the neuro-opthalmologist on Wednesday. Aidan has been doing really well with the seizures. He hasn't been having very many of them at all. They've significantly decreased in frequency and severity. I have noticed a slight twitching of his eyes. I'm not sure if that is an accurate description. I know there is a term for it, but it's like his eyes are actually moving up and down and they don't both move together at the same time. I will be bringing this up to the neurologist when he calls. I don't think it's something really significant considering that the seizures are getting better.
Well, I thought I'd post a little bit of an update for all of you reading. I'll post more once I talk to the doctor and get the MRI results.
~Erin
Saturday, May 31, 2008
Just wanted to say Thank You to Briana and Amy for the "girls night out" tonight. I had a really good time. It was nice to get out and remember that I actually enjoy doing things again. By the way, if you liked Sex and the City on HBO the movie was really good, GO SEE IT!
I hope everyone has a good weekend. I'll post more later!
~Erin
I hope everyone has a good weekend. I'll post more later!
~Erin
Wednesday, May 28, 2008
Dr appointment and MRI
Aidan had a follow-up appointment with the pediatric pulmonologist yesterday. To quote him, Aidan "sounds beautiful!" His lungs are really clear and and he sounds good. We have a broncoscopy scheduled for June 11th. Aidan will be put under mild anesthesia and they will pass a scope through his nose down past the trachea and into his lungs. While he is under the doctor is planning to take Aidan's trach tube out to see how he responds and to make sure his trachea doesn't collapse. This is just one step closer to getting the trach tube out. When we get through this and everything looks good, we'll meet with an ENT (ear, nose, throat dr.) to get Aidan fitted for the passy-muir valve that will allow him to breathe in through the trach tube but he will have to force the air out of his nose and mouth. So everything is looking great in that area. I'm excited to think that Aidan will be able to have his trach removed by the end of the summer if everything goes well.
Today was the MRI. Everything went well except they had to stick him 5 times to get an IV started. He looked like a little pin-cushion. We probably won't have any results back on it until tomorrow or Friday. He's slept for a good part of the day, so I'm hoping he'll rest tonight.
Sunday night will be our trial night alone with Aidan. So far since he's been home we've had a night nurse, but with our hours dropping we have to rearrange the schedule. I wanted to try not having a nurse for an evening to see if I feel comfortable not having someone sitting with him at night. I'll have the baby monitor right beside him so I can hear if he needs to be suctioned or anything like that, but I'm a paranoid mommy. I still go in to make sure he's breathing. I was bad before the accident, but there is nothing like seeing your child lifeless and not breathing to make you fear he'll just stop breathing again. Irrational, I know, considering how well he's doing, but hey, I'm neurotic and a control freak! :)
On another good note, Aidan hasn't been having as many "seizures" as he had been having. In fact I don't think I've seen him have any at all today. The nurse said that he had a few last night all provoked by her giving his routine cares (meds, etc.) Other than that, he's done pretty well.
Please say a prayer that we get some good news with the results of his MRI. I'm hoping for a miracle and the report to show that Aidan's brain is healing. I just need to know that all of our efforts are paying off. I can see the little changes in him, but it would be great to see them on the MRI films.
Thanks everyone!
~Erin
Sunday, May 25, 2008
Sorry for not posting in a few days. There really isn't a whole lot to tell. Aidan is doing okay. He's been pretty irritable today. The past few days he's done well. The dietitian came out on Thursday and we pretty much got off on a bad note. She didn't seem all that supportive of me creating a blenderized diet for Aidan. Her excuse being that he wouldn't get enough nutrients from a combination of babyfood and other foods. She also said it would be a lot of work. I know it's a lot of work. I ended up showing her the jars of babyfood and the formula that I had worked out. I spent a lot of time reading and trying to balance the stuff out. I also showed her Aidan's liquid multi-vitamin (IntraKids). It has everything that Aidan might not get enough of from his food.
The formula that he is currently on is causing him a lot of problems. The dietitian suggested a different formula that we will talk to the doctor about getting him started on instead of what he is on. I'm not completely opposed to using formula. It is a convenience, but it makes me feel lazy to just open a can and pour it into his tube. I don't know. The past week has definitely taken a toll on me personally. I'm exhausted. There is so much stuff that needs to be done and I don't have the time or the energy to get it all done let alone anything that I WANT to do.
Aidan has an appointment with the pulmonologist on Tuesday, so hopefully we'll find out something about the bronchioscope or the passy-muir valve.
Hope everyone has a fun and SAFE Memorial Day. Please, if you are going to be near water, keep your children safe. Too many children drown this time of year. I hate to think of anyone else going through this hell.
Please continue to say prayers for Aidan and for Allison. I have been emailing her grandmother and they had to reset her arm because she dislocated it. She is storming that badly. Pray that her doctors are able to find the right medicine to help control her storms and that they find a way to get her hyperbaric treatments.
I also ask that you pray we get in some golf tournament registrations. We were hoping to put the proceeds of it toward getting Aidan's hyperbaric chamber. With gas at $4 a gallon now, driving to and from Charlotte every day is taking it's toll on us and our van. This is our only vehicle, so I would hate for anything to happen to it. Also pray that Russell hears something about these jobs that he has interviewed for. We have been hoping and praying to hear back about one in particular, but the people doing the hiring are out of the country on a job.
Thanks everyone!
~Erin
The formula that he is currently on is causing him a lot of problems. The dietitian suggested a different formula that we will talk to the doctor about getting him started on instead of what he is on. I'm not completely opposed to using formula. It is a convenience, but it makes me feel lazy to just open a can and pour it into his tube. I don't know. The past week has definitely taken a toll on me personally. I'm exhausted. There is so much stuff that needs to be done and I don't have the time or the energy to get it all done let alone anything that I WANT to do.
Aidan has an appointment with the pulmonologist on Tuesday, so hopefully we'll find out something about the bronchioscope or the passy-muir valve.
Hope everyone has a fun and SAFE Memorial Day. Please, if you are going to be near water, keep your children safe. Too many children drown this time of year. I hate to think of anyone else going through this hell.
Please continue to say prayers for Aidan and for Allison. I have been emailing her grandmother and they had to reset her arm because she dislocated it. She is storming that badly. Pray that her doctors are able to find the right medicine to help control her storms and that they find a way to get her hyperbaric treatments.
I also ask that you pray we get in some golf tournament registrations. We were hoping to put the proceeds of it toward getting Aidan's hyperbaric chamber. With gas at $4 a gallon now, driving to and from Charlotte every day is taking it's toll on us and our van. This is our only vehicle, so I would hate for anything to happen to it. Also pray that Russell hears something about these jobs that he has interviewed for. We have been hoping and praying to hear back about one in particular, but the people doing the hiring are out of the country on a job.
Thanks everyone!
~Erin
Tuesday, May 20, 2008
update
I took Aidan to the doctor yesterday morning and he doesn't have an ear infection, which is good. He seemed to be his usual self yesterday. We're thinking he was just having pains from being constipated. He's on so many meds that cause constipation, so we have to keep giving his stuff to conteract them.
He did have a lot more seizures yesterday, so I followed our neurologists plan of giving Aidan ativan if he has a pretty severe seizure and see how it affects him. I had to give him two doses yesterday about 5 hours apart. The medicine seemed to help because he didn't have but maybe one or two little startles and then a bigger one which I gave him the second dose for. We'll have to keep this up until Friday and then I'm supposed to call the doctor back and let him know how Aidan did.
I got a call from the anesthesiologist who will be putting Aidan to sleep for him MRI next week. They just have to go over his medical history and all of that stuff. I have to call the lady who does the scheduling and get the SPECT scan rescheduled because the doctor doesn't want Aidan to have 2 tests requiring anesthesia so close together, and he'd rather us do the MRI first.
Aidan's doctor said that she sees a big difference in him from the last time she saw him. He actually followed her with his eyes. I see him every day, so I don't always see some of the changes right away. He did stretch his legs and arm when he woke up from a nap which is something new.
Other than that, not much is going on. Still waiting to find out about when the swallow study will be scheduled and we're waiting on the stander and Aidan's wheelchair/stroller and bath chair. It will be several more weeks before we hear anything about those, though.
Please pray for Aidan's continued progress. He's coming along well. I look at him and think how lucky we are to still have him here. I can't imagine my life without him in it. I just wish he was running around and playing instead of lying in a crib watching a movie right now. I have hope that he'll be running around eventually... I just have to hold on to that. Please also pray that this golf tournament fundraiser goes well. I'm getting nervous about it because we haven't had anyone register to play in it yet. I'm hoping that they will start coming in the next week or so.
Thanks everyone!
~Erin
He did have a lot more seizures yesterday, so I followed our neurologists plan of giving Aidan ativan if he has a pretty severe seizure and see how it affects him. I had to give him two doses yesterday about 5 hours apart. The medicine seemed to help because he didn't have but maybe one or two little startles and then a bigger one which I gave him the second dose for. We'll have to keep this up until Friday and then I'm supposed to call the doctor back and let him know how Aidan did.
I got a call from the anesthesiologist who will be putting Aidan to sleep for him MRI next week. They just have to go over his medical history and all of that stuff. I have to call the lady who does the scheduling and get the SPECT scan rescheduled because the doctor doesn't want Aidan to have 2 tests requiring anesthesia so close together, and he'd rather us do the MRI first.
Aidan's doctor said that she sees a big difference in him from the last time she saw him. He actually followed her with his eyes. I see him every day, so I don't always see some of the changes right away. He did stretch his legs and arm when he woke up from a nap which is something new.
Other than that, not much is going on. Still waiting to find out about when the swallow study will be scheduled and we're waiting on the stander and Aidan's wheelchair/stroller and bath chair. It will be several more weeks before we hear anything about those, though.
Please pray for Aidan's continued progress. He's coming along well. I look at him and think how lucky we are to still have him here. I can't imagine my life without him in it. I just wish he was running around and playing instead of lying in a crib watching a movie right now. I have hope that he'll be running around eventually... I just have to hold on to that. Please also pray that this golf tournament fundraiser goes well. I'm getting nervous about it because we haven't had anyone register to play in it yet. I'm hoping that they will start coming in the next week or so.
Thanks everyone!
~Erin
Sunday, May 18, 2008
Hoping to find out something this week
Aidan continued to be grouchy through the first part of today. He did eventually calm down some after some people came to do some "energy work" (Reiki/Healing Touch) on him this afternoon, but he was still fussy from time to time, especially when we put anything through his G-Tube.
We had already ruled out everything else (gas, constipation, storms, new injuries, etc.), so Erin checked his ears as a last resort. His left ear had a lot of wax in it and his right ear was a little red. She called Aidan's PCP and got an appointment setup for tomorrow morning. It may be nothing, but he may have an ear infection. Nana checked it when she came in this evening and she didn't see anything that indicated he had one. Still, we would like to make sure since he is doing they hyperbaric therapy.
-- Russell
We had already ruled out everything else (gas, constipation, storms, new injuries, etc.), so Erin checked his ears as a last resort. His left ear had a lot of wax in it and his right ear was a little red. She called Aidan's PCP and got an appointment setup for tomorrow morning. It may be nothing, but he may have an ear infection. Nana checked it when she came in this evening and she didn't see anything that indicated he had one. Still, we would like to make sure since he is doing they hyperbaric therapy.
-- Russell
Saturday, May 17, 2008
A new day
Today was another day. Aidan was a little better. He didn't sleep well last night. We didn't have a nurse today again. It wouldn't have been that bad if yesterday hadn't been so bad. He didn't fuss as much today as he did yesterday. Aidan was actually able to take a couple of naps and catch up on the sleep he missed. I don't know if keeping him up so much the other night for his EEG was the culprit, but something caused the change.
I've been trying to change his diet gradually from the formula they put him on in the hospital. He's done well so far, so I don't really know what exactly would have triggered the irritability. He's asleep now and I'm grateful for that. The nurse comes in at 11. Hopefully he'll have a peaceful night tonight.
I've been trying to change his diet gradually from the formula they put him on in the hospital. He's done well so far, so I don't really know what exactly would have triggered the irritability. He's asleep now and I'm grateful for that. The nurse comes in at 11. Hopefully he'll have a peaceful night tonight.
Friday, May 16, 2008
EEG
Aidan had the 2 hour EEG yesterday which he had to be sleep deprived for. It was interesting trying to keep him awake. He did well during the test and finally had a "seizure" episode for them to record. The also were videotaping him during the test so that they could compare the EEG with his actual response.
The neurologist called early this morning to talk to me about the results and he said he can't say for certain that these are or aren't seizures. They aren't occuring in the part of the brain that epileptic seizures occur. These are happening deeper in the brain and although there is a spike on the recording at the beginning of the episode, his activity actually slows down after the initial spike.
He said this very well could be Aidan's brain's way of "waking up" from all of the drugs that he had in his system. It makes sense to me because the episodes have progressed from being very short, almost unnoticeable startles to involving his entire body. He jerks his arms and legs, his head turns and his eyes jerk in the direction his head is turned. It's alarming to see.
So, we're supposed to be trying to give him a dose of ativan if he has a bad episode and see if that helps calm them. He is generally fairly agitated in the evenings but usually a dose of tylenol will help him settle down and go to sleep.
Today has been a rough day on both of us. Aidan did fine this morning at his hyberbaric treatment and even on the way home, but once Russell and the nurse got him in the house he started fussing. He hasn't calmed down for more than 10 minutes since 11:30 this morning. He's cried and cried and fussed. I don't know what's wrong with him. We've given him tylenol, gas drops, ativan and extra clonidine and he still hasn't settled down. He's so tired but he still is fussing. He'll start to settle down and this his little face scrunches up and he starts crying again. It's like something is hurting him and I just can't figure out for the life of me what is wrong.
I'm at my wits end this evening. I feel absolutely useless. It's so easy for everyone around me to act concerned, but when things get bad or they've had all they can stand to see Aidan the way he is, they just walk away. It must be so nice to just turn your back on it and pretend he's okay. Aidan isn't okay! He quit being okay 3 months ago when he managed to drown in a pond with 6 capable adults around. He was supposed to be safe! He was supposed to be with people that were watching him and playing with him. I'm so damn angry right now and I'm sick... I'm sick to death of what my life has become. It's a nightmare! I thought things were going to be getting better- that Russell and I would finally be able to get out and get our own place and we'd have our little family and everything would be great. Boy was I ever wrong.
I don't want to drag everyone down with my pity party. Everyone wants to know how Aidan is... well, here's a day in the life of Aidan. It's a particularly bad day and one I wish would end soon. Sorry for being bitter, but I can't help it.
The neurologist called early this morning to talk to me about the results and he said he can't say for certain that these are or aren't seizures. They aren't occuring in the part of the brain that epileptic seizures occur. These are happening deeper in the brain and although there is a spike on the recording at the beginning of the episode, his activity actually slows down after the initial spike.
He said this very well could be Aidan's brain's way of "waking up" from all of the drugs that he had in his system. It makes sense to me because the episodes have progressed from being very short, almost unnoticeable startles to involving his entire body. He jerks his arms and legs, his head turns and his eyes jerk in the direction his head is turned. It's alarming to see.
So, we're supposed to be trying to give him a dose of ativan if he has a bad episode and see if that helps calm them. He is generally fairly agitated in the evenings but usually a dose of tylenol will help him settle down and go to sleep.
Today has been a rough day on both of us. Aidan did fine this morning at his hyberbaric treatment and even on the way home, but once Russell and the nurse got him in the house he started fussing. He hasn't calmed down for more than 10 minutes since 11:30 this morning. He's cried and cried and fussed. I don't know what's wrong with him. We've given him tylenol, gas drops, ativan and extra clonidine and he still hasn't settled down. He's so tired but he still is fussing. He'll start to settle down and this his little face scrunches up and he starts crying again. It's like something is hurting him and I just can't figure out for the life of me what is wrong.
I'm at my wits end this evening. I feel absolutely useless. It's so easy for everyone around me to act concerned, but when things get bad or they've had all they can stand to see Aidan the way he is, they just walk away. It must be so nice to just turn your back on it and pretend he's okay. Aidan isn't okay! He quit being okay 3 months ago when he managed to drown in a pond with 6 capable adults around. He was supposed to be safe! He was supposed to be with people that were watching him and playing with him. I'm so damn angry right now and I'm sick... I'm sick to death of what my life has become. It's a nightmare! I thought things were going to be getting better- that Russell and I would finally be able to get out and get our own place and we'd have our little family and everything would be great. Boy was I ever wrong.
I don't want to drag everyone down with my pity party. Everyone wants to know how Aidan is... well, here's a day in the life of Aidan. It's a particularly bad day and one I wish would end soon. Sorry for being bitter, but I can't help it.
Monday, May 12, 2008
Mother's Day
I meant to post yesterday to wish all of the mothers a wonderful day, but I just let time get away from me. We spent the day at my mamaw's with my mom and 2 of my aunts and other family. We had dinner and homemade cherry and banana ice cream. Aidan did really well while we were there and slept on the couch for a while. When he woke up I got him down in the floor to sit up for a while. Evan was his usual self, being spoiled rotten by my aunt and cousins.
I won't lie and say I'm doing well. I'm sad. For the past week or so, I've cried every day, multiple times a day. I look at Aidan and I can't help but think of how alive and energetic and happy he used to be. I miss the noise and the mess he used to make. I'd give anything just to hear him say "mama" again. I don't want to wait weeks or months or years.
I don't know how other parents have gotten past this grief- missing the child that once was and accepting the new, broken one. That's just exactly how it feels. Aidan is broken and I can't fix him. No amount of work that I do can fix him. I can love him and I can hold him, and I do. I hold his hand each night as he's drifting off to sleep and I pray that the old Aidan will wake up and come back to life. I want more than anything for the past almost 3 months to have been a horrible dream. I want to wake up and my life be back to the way it was.
So anyway- I spent my Mother's Day trying to forget how I feel like a terrible mom and tried to focus it on my mom and my mamaw, and my aunts. I hope they all know how much I love them, respect and appreciate them.
I won't lie and say I'm doing well. I'm sad. For the past week or so, I've cried every day, multiple times a day. I look at Aidan and I can't help but think of how alive and energetic and happy he used to be. I miss the noise and the mess he used to make. I'd give anything just to hear him say "mama" again. I don't want to wait weeks or months or years.
I don't know how other parents have gotten past this grief- missing the child that once was and accepting the new, broken one. That's just exactly how it feels. Aidan is broken and I can't fix him. No amount of work that I do can fix him. I can love him and I can hold him, and I do. I hold his hand each night as he's drifting off to sleep and I pray that the old Aidan will wake up and come back to life. I want more than anything for the past almost 3 months to have been a horrible dream. I want to wake up and my life be back to the way it was.
So anyway- I spent my Mother's Day trying to forget how I feel like a terrible mom and tried to focus it on my mom and my mamaw, and my aunts. I hope they all know how much I love them, respect and appreciate them.
Saturday, May 10, 2008
updates
Today we've been without a day nurse. With it being Mother's Day weekend, they were having trouble filling the schedule. We're supposed to have 2 nurses a day for a total of 20 hours. We usually have a break in the evening from 5-9pm. That schedule will change next Friday and go down to 16 hours a day, but this is the most time we've spent with Aidan without a nurse being here. I feel perfectly comfortable taking care of him, so it really isn't an issue.
The SPECT scan we had scheduled for Monday has been canceled because anesthesia was not scheduled at the same time for Aidan. I'm assuming that the person who originally scheduled the scan had a reason for not coordinating with anesthesia. The lady I spoke with on Friday said that because of Aidan's age, they didn't want to risk him moving... HA! The most he's going to do is move his mouth and maybe slightly turn his head.... unless he has one of his "seizure" episodes. Anyway, it looks like it will be the end of the month before he will have that scan done. But it looks like it will be the day before the MRI, which will also require anesthesia. I don't know if that's going to happen either because I really don't want him to be put to sleep two days in a row.
The golf tournament is coming together. We're trying to get more sponsors and prizes lined up, but we've yet to get anyone to register for the tournament (I have a feeling most of the registrations will come in around the 2 weeks before the tourney happens. --Russell). I really hope that this picks up because I'm kind of starting to get worried about it. A lot of people have expressed interest. We're working on getting fliers out with registration forms so hopefully this will turn out well.
We have some other people looking into doing a poker tournament or a poker run fundraiser as well. I don't know the first thing about that stuff, so I'm glad someone else is handling that.
We're doing pretty well at selling the wristbands. Several of Russell's mom's coworkers have ordered some, and Matthew's girlfriend has taken some to her work. With those along with all the ones other family members have, we are getting them pretty well distributed. If anyone would like to purchase one that hasn't so far, I have more of the mediums than the other sizes, but we still have plenty.
Russell has a second interview Friday with a company here in Concord. He felt it went pretty well, and should know something about it on Monday. The pay is pretty good for what he will be doing, so that will definitely help things along.
Other than that, there hasn't been much going on. The chair that I ordered for Aidan came in yesterday and it works really well for him. It's like the tumbleform chair he had in the hospital, but it's made by a different company called Special Tomato. I like the shape and covering on this chair better as well as the harness. We're still waiting to hear about the stander, bath seat and wheelchair, but it could take a while with the billing.
I'll try to post more later. I'd like to ask that everyone focus their prayers on Aidan's swallowing ability. He's not swallowing consistently. He did show some interest in chewing yesterday when we stopped at McDonald's as we were leaving Walmart last night. I took a fry and let him taste it and he actually bit down on it and was trying to chew it, so he's showing interest in eating, but we have to work on the swallowing so he doesn't aspirate stuff into his lungs. So, please, focus your prayers on that, as well as Russell's continued job hopes. We greatly appreciate everyone's support and the continued prayers. I really believe that we wouldn't be this far if it wasn't for that.
Thanks!
Erin
The SPECT scan we had scheduled for Monday has been canceled because anesthesia was not scheduled at the same time for Aidan. I'm assuming that the person who originally scheduled the scan had a reason for not coordinating with anesthesia. The lady I spoke with on Friday said that because of Aidan's age, they didn't want to risk him moving... HA! The most he's going to do is move his mouth and maybe slightly turn his head.... unless he has one of his "seizure" episodes. Anyway, it looks like it will be the end of the month before he will have that scan done. But it looks like it will be the day before the MRI, which will also require anesthesia. I don't know if that's going to happen either because I really don't want him to be put to sleep two days in a row.
The golf tournament is coming together. We're trying to get more sponsors and prizes lined up, but we've yet to get anyone to register for the tournament (I have a feeling most of the registrations will come in around the 2 weeks before the tourney happens. --Russell). I really hope that this picks up because I'm kind of starting to get worried about it. A lot of people have expressed interest. We're working on getting fliers out with registration forms so hopefully this will turn out well.
We have some other people looking into doing a poker tournament or a poker run fundraiser as well. I don't know the first thing about that stuff, so I'm glad someone else is handling that.
We're doing pretty well at selling the wristbands. Several of Russell's mom's coworkers have ordered some, and Matthew's girlfriend has taken some to her work. With those along with all the ones other family members have, we are getting them pretty well distributed. If anyone would like to purchase one that hasn't so far, I have more of the mediums than the other sizes, but we still have plenty.
Russell has a second interview Friday with a company here in Concord. He felt it went pretty well, and should know something about it on Monday. The pay is pretty good for what he will be doing, so that will definitely help things along.
Other than that, there hasn't been much going on. The chair that I ordered for Aidan came in yesterday and it works really well for him. It's like the tumbleform chair he had in the hospital, but it's made by a different company called Special Tomato. I like the shape and covering on this chair better as well as the harness. We're still waiting to hear about the stander, bath seat and wheelchair, but it could take a while with the billing.
I'll try to post more later. I'd like to ask that everyone focus their prayers on Aidan's swallowing ability. He's not swallowing consistently. He did show some interest in chewing yesterday when we stopped at McDonald's as we were leaving Walmart last night. I took a fry and let him taste it and he actually bit down on it and was trying to chew it, so he's showing interest in eating, but we have to work on the swallowing so he doesn't aspirate stuff into his lungs. So, please, focus your prayers on that, as well as Russell's continued job hopes. We greatly appreciate everyone's support and the continued prayers. I really believe that we wouldn't be this far if it wasn't for that.
Thanks!
Erin
Monday, May 5, 2008
tests scheduled and some pictures
Aidan's tests have been scheduled. He will have a SPECT scan done on the 12th at 11am, a 2 hour EEG May 15th at 8am, and a MRI on May 28th at 8am. Please make a note of those and say a prayer for him that we get good news and evidence of continued progress and healing.
I recently received an email from a grandmother who's granddaughter nearly drowned the same day that we brought Aidan home from the hospital. I don't know all the details, only that her name is Allison and that she fell into a man-made lake or pond. It just breaks my heart to know that another family is going through this pain. Please say a prayer for this little girl. I don't know where they live or anything, just that the little girl is having storms like Aidan was having and they feel like the doctors are giving up. I'm hoping to get more details, but I've asked that she give her daughter (the little girl's mother) my email address and phone number. I don't know what I can do to help other than to listen and pray for them. This is all too new to me, but I feel obligated to be there for someone going through the same thing we've just trudged through. Just pray, that's all I ask.
And for the pictures- I got a few pictures over the weekend and today. The first is Aidan sleeping. I love this picture of him. It reminds me of how he used to sleep before the accident. The next one is of Aidan and my friend's little girl, Abby at the Carolina Speed game Saturday night. And the last one is of Evan checking Aidan out while he was trying to take a nap. Got to love little brothers! :)
I recently received an email from a grandmother who's granddaughter nearly drowned the same day that we brought Aidan home from the hospital. I don't know all the details, only that her name is Allison and that she fell into a man-made lake or pond. It just breaks my heart to know that another family is going through this pain. Please say a prayer for this little girl. I don't know where they live or anything, just that the little girl is having storms like Aidan was having and they feel like the doctors are giving up. I'm hoping to get more details, but I've asked that she give her daughter (the little girl's mother) my email address and phone number. I don't know what I can do to help other than to listen and pray for them. This is all too new to me, but I feel obligated to be there for someone going through the same thing we've just trudged through. Just pray, that's all I ask.
And for the pictures- I got a few pictures over the weekend and today. The first is Aidan sleeping. I love this picture of him. It reminds me of how he used to sleep before the accident. The next one is of Aidan and my friend's little girl, Abby at the Carolina Speed game Saturday night. And the last one is of Evan checking Aidan out while he was trying to take a nap. Got to love little brothers! :)
Friday, May 2, 2008
Bracelets have arrived!
After a very long wait, we finally have received the "Pray for Aidan" bracelets!
We have the following colors in small (7" circumference), medium (7.5" circumference) and large (8" circumference):
green
navy blue
orange
red
royal blue
To receive one, simply donate $5 per bracelet via PayPal (aidanwwright@gmail.com) or you can mail your payment and other info to us at the address listed to the left (1700 Cline School Rd). Make sure you indicate the color(s) and size(s) you would like, as well as the address to where you would like the bracelet(s) sent. We'll do our best to get them sent out within a few days of receiving payment.
--Russell
We have the following colors in small (7" circumference), medium (7.5" circumference) and large (8" circumference):
green
navy blue
orange
red
royal blue
To receive one, simply donate $5 per bracelet via PayPal (aidanwwright@gmail.com) or you can mail your payment and other info to us at the address listed to the left (1700 Cline School Rd). Make sure you indicate the color(s) and size(s) you would like, as well as the address to where you would like the bracelet(s) sent. We'll do our best to get them sent out within a few days of receiving payment.
--Russell
Thursday, May 1, 2008
Video from News14.com
It took a little trickery (i.e., downloading an application to record the stream), but the movie is now uploaded to YouTube. It is now over on the left side of the page; simply click on it to view it.
I would like to take the opportunity to thank News14 Carolina for offering us the chance to put our face and story out there on TV. Again, the reporter did a great job in telling the important part of the story: how we are in need of a HBOT chamber at home and we are trying to raise the funds to get one.
--Russell
I would like to take the opportunity to thank News14 Carolina for offering us the chance to put our face and story out there on TV. Again, the reporter did a great job in telling the important part of the story: how we are in need of a HBOT chamber at home and we are trying to raise the funds to get one.
--Russell
Story from News14.com
Link to Story
Family struggles to help child recover
Family struggles to help child recover
05/01/2008 06:37 PM
By: Jennifer Moxley
Aidan Wright’s parents want to continue the 2-year-old’s therapy at home, but they are struggling to pay for it. Part of the therapy is putting Aidan in a hyperbaric chamber. “What we’re doing is we’re taking oxygen -- concentrated, compressed, under pressure -- and we’re giving it to his brain,” said Rebecca McCall with Alternative Health Solutions.
The hope is that by giving him oxygen in the chamber, parts of Aidan’s brain will come back.
“He's fighting, he's still in there and we hope and pray that we can get him out of there,” said Russell Wright. He lost his job five days before the accident, so the family is on Medicaid. As the oxygen treatment is considered an alternative therapy, insurance doesn’t cover it.
Aidan being held by father Russell.
“Lack of oxygen to your brain, treat it with oxygen instead of pumping more medical chemicals into your body,” stated mother Erin.
McCall is donating her time and services, but the Wrights want to buy a chamber of their own so their son can get more treatment. No matter the stress or financial burden, they say they won’t give up.
“If you had something like this happen to [a loved one], wouldn't you do the same thing,” asked Russell. “I mean wouldn't you go to the ends of the Earth to make sure he was alright?”
The hyperbaric chamber costs about $25,000 and so far the family estimates they’ve raised $9,000. A golf tournament to raise money is scheduled for June 14 at Rocky River Golf Club.
Just saw the news report ...
I will have to say that I am impressed with how the reporter from News14 put the report together. A lot of it was Dr. Rebecca talking about the therapy, but they interspersed a few sound bites of me and Erin talking. They stressed the therapy and not so much the accident. Once it becomes available online (after 7PM), I will look into uploading it to our YouTube account so it can be seen through here.
If you are watching in North or South Carolina, it came on right around half past the hour. Unfortunately, you won't be able to watch it until it appears online if you have any provider other than Time Warner Cable.
-- Russell
If you are watching in North or South Carolina, it came on right around half past the hour. Unfortunately, you won't be able to watch it until it appears online if you have any provider other than Time Warner Cable.
-- Russell
We're going to be on the news!
A local news station, channel 14, asked to do a follow up story about Aidan after they were contacted regarding the fundraising golf tournament that is being planned. We met with the reporter this morning at Dr. Rebecca's. Aidan and I went into the chamber while the reporter interviewed Russell and Dr. Rebecca. Aidan fell asleep in the chamber and once we got out, I was interviewed. I really didn't want to be on camera, but it was kind of inevitable seeing that I was dealing with Aidan. I hope the story turns out well.
We were just really unaware just how big Aidan's story was initially. The PR guy for the hospital really buffered all of the questions and calls from the media so we just had no idea just how many calls they were getting. I know he told us that they were getting hundreds of calls just at the hospital alone wanting to know about Aidan. The news channels and newspapers were getting calls. So far, we've only done the one press release on Aidan's birthday, the interview with the Salisbury Post recently and this interview today with Channel 14.
The reporter was very nice and she did a great job making me feel comfortable about the story. If one family can be spared the heartache that we've had to endure during this whole experience, then it's been worth it. Accidents happen and little kids just get away from you in the blink of an eye, but most drowning accidents are 100% avoidable.
Our family failed to communicate Aidan's whereabouts, but no one person is at fault. It was an accident. I just want parents, grandparents, and caregivers to be conscious of the dangers of water. A child can drown in as little as 2 inches of water. A fountain, a bucket of mop water, a dog's water bowl- they are all just as dangerous as a bathtub, pool, lake, or a pond. I don't bring this up to scare people or make parents paranoid, just be aware of the danger and take precautions if you do have a pool or water in and around your home.
Anyway, back to the news story. The story will air at 5pm and will be available online after 7pm at http://www.news14.com.
Thank you to everyone for your prayers and support!
~Erin
We were just really unaware just how big Aidan's story was initially. The PR guy for the hospital really buffered all of the questions and calls from the media so we just had no idea just how many calls they were getting. I know he told us that they were getting hundreds of calls just at the hospital alone wanting to know about Aidan. The news channels and newspapers were getting calls. So far, we've only done the one press release on Aidan's birthday, the interview with the Salisbury Post recently and this interview today with Channel 14.
The reporter was very nice and she did a great job making me feel comfortable about the story. If one family can be spared the heartache that we've had to endure during this whole experience, then it's been worth it. Accidents happen and little kids just get away from you in the blink of an eye, but most drowning accidents are 100% avoidable.
Our family failed to communicate Aidan's whereabouts, but no one person is at fault. It was an accident. I just want parents, grandparents, and caregivers to be conscious of the dangers of water. A child can drown in as little as 2 inches of water. A fountain, a bucket of mop water, a dog's water bowl- they are all just as dangerous as a bathtub, pool, lake, or a pond. I don't bring this up to scare people or make parents paranoid, just be aware of the danger and take precautions if you do have a pool or water in and around your home.
Anyway, back to the news story. The story will air at 5pm and will be available online after 7pm at http://www.news14.com.
Thank you to everyone for your prayers and support!
~Erin
Subscribe to:
Posts (Atom)