Hi everyone! I apologize for not updating the blog since Aidan's heel cord lengthening surgery in April. It's been a busy few months. The surgery went well and Aidan's feet are now back to a neutral angle instead of being completely pointed down, making any ballerina sick with envy. We had a few setbacks due to some cramping and pain from wearing hard casts for 6 weeks, and are now dealing with some issues with his left hip.
Both hips are completely dislocated, but his left femur has moved up and is now causing pain and decreased mobility in his hip. We want to avoid hip surgery and his doctor says that he is still very young for the surgery considering he has more growing to do.
We had an appointment with his neurologist today and we discussed the possibility of doing a VNS (Vagus nerve stimulator) to help control his seizures since he is currently maxed out on the medication he takes for his seizures. It is something that Russell and I will have to discuss and research, but from what I know about it, I think it's a good option. http://www.epilepsy.com/EPILEPSY/vns
Aside from that, I'd like to share our newest fundraising event. We decided to try an extended fundraising event hosted by Indiegogo. As some of you know, equipment, adaptive technology and therapies are extremely expensive and most insurance companies will not pay for these items. That does not make these things any less beneficial for children like Aidan, quite the contrary, these items can make daily life and care much easier and can make it possible to teach Aidan a way to communicate with us, aside from crying.
There are therapies that we would love to be able to do with Aidan that could greatly improve his progress, such as hyperbaric oxygen therapy and stem cell therapy. From our previous experience with HBOT, we know it was beneficial. It was during that time that we saw Aidan smile and laugh for the first time after the surgery. His tone improved and he was a totally different child than he is today.
Stem cell therapy is something that after a lot of research and speaking with other parents who have children like Aidan, we've decided we want to try. While we know that some aspects of stem cells are controversial, I assure you, the stem cells that are used in the therapy we are considering are the non controversial, umbilical cells. These are cells that are donated for use.
With all that being said, we are trying to raise as much money as possible so that we can provide these things for Aidan. Whether we reach our goal or not, all of the funds can and will be used for Aidan's care. Any amount will help, $5, $10 or larger, and if you aren't able to contribute, please share this with your family and friends and ask them to do the same. The more exposure we can get, the better our chances of being able to reach our goal.
We thank you all for your continued support and prayers for our family on this very long and difficult road. Aidan is definitely a very blessed and very loved little boy.
Thursday, July 26, 2012
Friday, April 20, 2012
My name is Erin and I'm a horrible blogger
I think the title says it all. I have neglected updating this blog for one reason or another. I'm on Facebook much more often that it's just easier to update Aidan's page there since there are over 1000 people like the page.
I meant to post something about the 4th anniversary of the accident and Aidan's birthday, but they both passed uneventfully. It's getting easier to deal with the loss that we feel. We have our days but I have too many things and people that demand my attention to wallow in sadness all the time.
I just recently came to the conclusion that what I miss most about Aidan is the interaction that we used to have. Another conclusion that I came to with the help of another ND mom's blog is that I just need to accept that this is how Aidan is. I need to stop wanting to FIX him because if the doctors and medicine can't fix his brain or erase the damage from the accident, then I surely can't. All I can do is be here to love him and care for him as long as I'm able to.
So with that revelation, we've just been living life. Doing the day to day stuff. We're trying to get approval from CAP-C (medicaid waiver program) to have the shower in our bathroom modified to better accommodate a shower chair, and to also replace the wheelchair ramp that we have to get Aidan in and out of the house. I just signed the last piece of paperwork for that today, so I'm hoping that we'll get an approval letter soon.
We've had several pieces of equipment approved but it takes so long sometimes to get the stuff. It may be another 3-6 months before we see any of it.
This coming Monday, Aidan is having surgery to release his heel cords. The tone in his legs is so high and it's caused severe foot drop. Imagine constantly pointing your toes... even when you can relax those muscles, they never relax enough that you can bring your foot up to flex it. That's how Aidan's feet are all the time. It's gotten more and more difficult to stretch him so that we can put his AFO braces on and therefore he can't stand in his stander.
So please keep Aidan in your prayers while he undergoes this surgery. It's a quick procedure, but he'll still be put to sleep so there's always concern for us there. While he's asleep they will put casts on his feet and lower legs. I'm not sure how long the casts will have to stay on, but I'm sure he's not going to be happy about them.
In June we have an appointment with a neurosurgeon to discuss the baclofen pump yet again. We had been seeing another surgeon, but he moved to another city, and since it's been almost 2 years since we did the baclofen trial we'll have to start over anyway. I'm hoping that Aidan will be able to have the surgery this summer.
So that's what is going on in our world. I'll try to remember to post after Aidan's surgery on Monday.
As always, thank you for the prayers and support.
~Erin
I meant to post something about the 4th anniversary of the accident and Aidan's birthday, but they both passed uneventfully. It's getting easier to deal with the loss that we feel. We have our days but I have too many things and people that demand my attention to wallow in sadness all the time.
I just recently came to the conclusion that what I miss most about Aidan is the interaction that we used to have. Another conclusion that I came to with the help of another ND mom's blog is that I just need to accept that this is how Aidan is. I need to stop wanting to FIX him because if the doctors and medicine can't fix his brain or erase the damage from the accident, then I surely can't. All I can do is be here to love him and care for him as long as I'm able to.
So with that revelation, we've just been living life. Doing the day to day stuff. We're trying to get approval from CAP-C (medicaid waiver program) to have the shower in our bathroom modified to better accommodate a shower chair, and to also replace the wheelchair ramp that we have to get Aidan in and out of the house. I just signed the last piece of paperwork for that today, so I'm hoping that we'll get an approval letter soon.
We've had several pieces of equipment approved but it takes so long sometimes to get the stuff. It may be another 3-6 months before we see any of it.
This coming Monday, Aidan is having surgery to release his heel cords. The tone in his legs is so high and it's caused severe foot drop. Imagine constantly pointing your toes... even when you can relax those muscles, they never relax enough that you can bring your foot up to flex it. That's how Aidan's feet are all the time. It's gotten more and more difficult to stretch him so that we can put his AFO braces on and therefore he can't stand in his stander.
So please keep Aidan in your prayers while he undergoes this surgery. It's a quick procedure, but he'll still be put to sleep so there's always concern for us there. While he's asleep they will put casts on his feet and lower legs. I'm not sure how long the casts will have to stay on, but I'm sure he's not going to be happy about them.
In June we have an appointment with a neurosurgeon to discuss the baclofen pump yet again. We had been seeing another surgeon, but he moved to another city, and since it's been almost 2 years since we did the baclofen trial we'll have to start over anyway. I'm hoping that Aidan will be able to have the surgery this summer.
So that's what is going on in our world. I'll try to remember to post after Aidan's surgery on Monday.
As always, thank you for the prayers and support.
~Erin
Friday, January 27, 2012
updates and ramblings
Mr. Aidan had an appointment with a new neurologist to discuss the possibility of doing botox in Aidan's legs to help with his tone. After the doctor assessed Aidan's tone, she decided that the botox probably wasn't going to help very much and suggested surgery to cut the heel cords, and to see if we can get the baclofen pump surgery soon as well.
In addition to the visit today, Aidan had an appointment with a pediatric orthopedist last week. We've known that Aidan was starting to show some signs of scoliosis, but we weren't sure how bad it was. He had some x-rays done of his spine and his hips. The good news is that his spine isn't as bad as we thought it might be so we're just going to keep an eye on it and follow up again in a year unless we notice any changes before then.
The bad news is that Aidan's hips are completely dislocated. I was so upset looking at the x-rays. I expected some slippage, but I really wasn't expecting what I saw.
The dislocation is not something that just happened. It pretty much happened from the beginning. The constant high tone and posturing during the storming episodes and the continued tone gradually over time caused it. The doctor does not recommend surgery to repair this since Aidan is not ambulatory. Surgery would be painful and would take a very long time to heal as it requires breaking bones and resetting them. As long as Aidan isn't in any pain due to his hips, I'm not willing to cause him any undue stress or pain.
I would love to believe that Aidan could be completely healed by a miracle, but the realistic part of me knows that he'll never walk. I'd like to think that with stem cell therapy he could gain some ability to sit up with minimal support and maybe be able to communicate using a gaze communication device, but we can't afford stem cell therapy. My hopes for him are to be able to live as comfortable a life as he can and try to push him to make what progress he can make. I know that there is a smart little boy in there just waiting for us to figure out a way to help him.
The 4 year anniversary of the accident is less than a month away. I'm not dreading it like I have. It's just a day. The memories are always there. The grief is always there and it sneaks up on you when you least expect it, and it feels like an elephant sitting on your chest. It just hurts so bad and there is nothing you can do to fix it.
Imagine your perfectly normal child with all of his future wide open before him, you have dreams of him going to school, learning to drive, graduating, going to college, getting married, etc. and then imagine in a matter of moments all of that is taken away. You're left with a child that looks like your perfect little baby, but they're not really the same. The Aidan that we knew is not the same little boy we have today. There are little glimmers of that little boy, of his spirit, but he doesn't even smile the same way he used to.
We have been so blessed through this journey. We've had people who love us and support us praying for us this whole time, and we are so grateful for every single one of you. I hope that you all continue to keep Aidan in your hearts and that you share our story with other families, especially those with small children. I pray that more parents and caregivers are aware of the dangers of water and take more precautions to keep their children safe.
In addition to the visit today, Aidan had an appointment with a pediatric orthopedist last week. We've known that Aidan was starting to show some signs of scoliosis, but we weren't sure how bad it was. He had some x-rays done of his spine and his hips. The good news is that his spine isn't as bad as we thought it might be so we're just going to keep an eye on it and follow up again in a year unless we notice any changes before then.
The bad news is that Aidan's hips are completely dislocated. I was so upset looking at the x-rays. I expected some slippage, but I really wasn't expecting what I saw.
The dislocation is not something that just happened. It pretty much happened from the beginning. The constant high tone and posturing during the storming episodes and the continued tone gradually over time caused it. The doctor does not recommend surgery to repair this since Aidan is not ambulatory. Surgery would be painful and would take a very long time to heal as it requires breaking bones and resetting them. As long as Aidan isn't in any pain due to his hips, I'm not willing to cause him any undue stress or pain.
I would love to believe that Aidan could be completely healed by a miracle, but the realistic part of me knows that he'll never walk. I'd like to think that with stem cell therapy he could gain some ability to sit up with minimal support and maybe be able to communicate using a gaze communication device, but we can't afford stem cell therapy. My hopes for him are to be able to live as comfortable a life as he can and try to push him to make what progress he can make. I know that there is a smart little boy in there just waiting for us to figure out a way to help him.
The 4 year anniversary of the accident is less than a month away. I'm not dreading it like I have. It's just a day. The memories are always there. The grief is always there and it sneaks up on you when you least expect it, and it feels like an elephant sitting on your chest. It just hurts so bad and there is nothing you can do to fix it.
Imagine your perfectly normal child with all of his future wide open before him, you have dreams of him going to school, learning to drive, graduating, going to college, getting married, etc. and then imagine in a matter of moments all of that is taken away. You're left with a child that looks like your perfect little baby, but they're not really the same. The Aidan that we knew is not the same little boy we have today. There are little glimmers of that little boy, of his spirit, but he doesn't even smile the same way he used to.
We have been so blessed through this journey. We've had people who love us and support us praying for us this whole time, and we are so grateful for every single one of you. I hope that you all continue to keep Aidan in your hearts and that you share our story with other families, especially those with small children. I pray that more parents and caregivers are aware of the dangers of water and take more precautions to keep their children safe.
Saturday, December 31, 2011
A new look for the New Year
I decided to give the blog a face-lift yesterday. I thought it was time for a change, and I wanted to add some of the new features that Blogger has so that we can go back to using this as our main website with information and resources for families who have found themselves in this boat with us.
I'm still working on the pages and their content, but I hope that it's a start.
We had a good Christmas. Aidan has been fighting with some congestion, but it hasn't turned into anything bad yet. We just have to increase his breathing and vest treatments and try to get him to cough as much as possible.
Aidan got several new toys for Christmas including two interactive storybooks and story buddies that Hallmark has out. He got the Cooper, teddy bear and the Jingle, husky puppy. He seems to like the stories and he'll perk up when he hears the stuffed animal make sounds.
It is so difficult to find gifts for Aidan, especially since toys and things that are made for children with special needs are so expensive. Another ND mom posted some of the things that she got for her son that I hadn't even considered, so we'll be looking at some of those for Aidan's birthday, which is just around the corner.
This year has flown by. Luckily, Aidan managed to stay relatively healthy. We had our huge blow-up with our primary care group and had to change pediatricians, which was the worst thing I think happened this year. We lost a doctor that we all really trusted and liked because of that situation, which is unfortunate, but it's water under the bridge now. We also found out that Aidan is showing early signs of scoliosis, which is very common in children like him, because he has no trunk control.
Aidan started Kindergarten at a new school this year. He is one of 2 or 3 kids in his class unlike last year when he was in an integrated classroom. He seems to like it, and his teachers love him and are very good with him. If we could just get him to stay awake most of the day.
This coming year, we're looking forward to trying Botox again in Aidan's legs. He has an appointment at the end of January with a new doctor for this, and we're hoping that it will help with the high tone in Aidan's lower legs. If that doesn't work, we will consider doing the heel cord surgery, where the tendons are cut so that we can get more range in his ankles.
We are also taking him to a pediatric orthopedist to address his scoliosis. That appointment is in a few weeks, so I will post another update then.
Aidan started a new formula about a month ago and his calories were increased in an effort to get him to gain a little weight. We've been waiting almost 2 years for the baclofen pump surgery because he doesn't weigh enough for our surgeon to feel comfortable to do the surgery. So far he's gained about 3 pounds, and only has about 5 more to go.
I'm hoping to start trying out a blenderized formula for him since I'd like to get him off the premade formula. There are so many better options out there, and I think he'd benefit from the change in diet.
Aidan just recently passed a swallow study and is able to "eat" thickened liquids by mouth. Prior to starting the ketogenic diet last year, he had been able to eat purees and baby food, but the 9 months of nothing having anything by mouth set him back in his ability to swallow and maintain his airway when having food in his mouth, so we had to start over.
We're hoping that he'll continue to progress to eating purees again, but will require additional Vital Stim therapy and continued practice with the liquids.
There will be a fundraiser in early March to help us raise money for some therapies, hopefully HBOT. Russell is working with a local group to arrange a comedy show and auction. We'll post more info about it as the details are worked out.
It's my goal to be better at posting updates. It's so easy to do a quick blip of an update on Facebook, that I've gotten slack about posting here. With that said, we'd like to wish everyone a Happy New Year and thank you all for your continued support and prayers.
~Erin
I'm still working on the pages and their content, but I hope that it's a start.
We had a good Christmas. Aidan has been fighting with some congestion, but it hasn't turned into anything bad yet. We just have to increase his breathing and vest treatments and try to get him to cough as much as possible.
Aidan got several new toys for Christmas including two interactive storybooks and story buddies that Hallmark has out. He got the Cooper, teddy bear and the Jingle, husky puppy. He seems to like the stories and he'll perk up when he hears the stuffed animal make sounds.
This year has flown by. Luckily, Aidan managed to stay relatively healthy. We had our huge blow-up with our primary care group and had to change pediatricians, which was the worst thing I think happened this year. We lost a doctor that we all really trusted and liked because of that situation, which is unfortunate, but it's water under the bridge now. We also found out that Aidan is showing early signs of scoliosis, which is very common in children like him, because he has no trunk control.
Aidan started Kindergarten at a new school this year. He is one of 2 or 3 kids in his class unlike last year when he was in an integrated classroom. He seems to like it, and his teachers love him and are very good with him. If we could just get him to stay awake most of the day.
This coming year, we're looking forward to trying Botox again in Aidan's legs. He has an appointment at the end of January with a new doctor for this, and we're hoping that it will help with the high tone in Aidan's lower legs. If that doesn't work, we will consider doing the heel cord surgery, where the tendons are cut so that we can get more range in his ankles.
We are also taking him to a pediatric orthopedist to address his scoliosis. That appointment is in a few weeks, so I will post another update then.
Aidan started a new formula about a month ago and his calories were increased in an effort to get him to gain a little weight. We've been waiting almost 2 years for the baclofen pump surgery because he doesn't weigh enough for our surgeon to feel comfortable to do the surgery. So far he's gained about 3 pounds, and only has about 5 more to go.
I'm hoping to start trying out a blenderized formula for him since I'd like to get him off the premade formula. There are so many better options out there, and I think he'd benefit from the change in diet.
Aidan just recently passed a swallow study and is able to "eat" thickened liquids by mouth. Prior to starting the ketogenic diet last year, he had been able to eat purees and baby food, but the 9 months of nothing having anything by mouth set him back in his ability to swallow and maintain his airway when having food in his mouth, so we had to start over.
We're hoping that he'll continue to progress to eating purees again, but will require additional Vital Stim therapy and continued practice with the liquids.
There will be a fundraiser in early March to help us raise money for some therapies, hopefully HBOT. Russell is working with a local group to arrange a comedy show and auction. We'll post more info about it as the details are worked out.
It's my goal to be better at posting updates. It's so easy to do a quick blip of an update on Facebook, that I've gotten slack about posting here. With that said, we'd like to wish everyone a Happy New Year and thank you all for your continued support and prayers.
~Erin
Sunday, September 25, 2011
long overdue update
It's been a while since I posted, but not a whole lot has been going on. Aidan started Kindergarten at the end of August. He is in an EC class with 3 other children of various ages. I believe he's the only kindergartner. So far, I guess he enjoys it. He's been sleeping a lot during the day so it's hard to tell.
Over the past few months, we've noticed Aidan's heart rate dropping very low for brief periods of time during his sleep. Since it has been going on for some time now, we decided to take him to see a cardiologist this past Friday. This initial EKG that they did there in the office showed nothing out of the ordinary, but the doctor had a portable monitor placed on Aidan to be worn for 24 hours so that he might be able to see what is going on during the times that we're seeing his heart rate drop.
I'm hoping that it's nothing more than us needing to taper back the dosage of the Clonidine that he's on to control the storming symptoms. We'll know more after the data is reviewed.
Other than that, we took Aidan off of the Ketogenic diet because we didn't think it was having much impact on his seizures and he'd lost way too much weight. He now weighs 37 pounds and he's 42.5 inches long. We're trying to get him back up to 45 pounds so that his surgeon feels comfortable enough placing the baclofen pump that we've been waiting so long for.
In a few weeks, I am supposed to be going to Seattle some other mothers of near-drown children. If you recall, I went last year in November. It was such an amazing trip and I met some of the most wonderful and inspiring women ever. I am still trying to raise the money so that I can buy my plane ticket, but I'm hopeful that I'll be able to buy it in the next week or so with the amount of orders I've had come in for my crochet items.
I'm so sorry I've been so slack about posting new blog updates. Since we have a Facebook page for Aidan, we tend to update that more because it's just a quick blurb and so many people use it. We're so glad that so many people read this blog and have been touched or inspired by Aidan and our story.
Thank you for your continued prayers and support!
God Bless!
~Erin
Over the past few months, we've noticed Aidan's heart rate dropping very low for brief periods of time during his sleep. Since it has been going on for some time now, we decided to take him to see a cardiologist this past Friday. This initial EKG that they did there in the office showed nothing out of the ordinary, but the doctor had a portable monitor placed on Aidan to be worn for 24 hours so that he might be able to see what is going on during the times that we're seeing his heart rate drop.
I'm hoping that it's nothing more than us needing to taper back the dosage of the Clonidine that he's on to control the storming symptoms. We'll know more after the data is reviewed.
Other than that, we took Aidan off of the Ketogenic diet because we didn't think it was having much impact on his seizures and he'd lost way too much weight. He now weighs 37 pounds and he's 42.5 inches long. We're trying to get him back up to 45 pounds so that his surgeon feels comfortable enough placing the baclofen pump that we've been waiting so long for.
In a few weeks, I am supposed to be going to Seattle some other mothers of near-drown children. If you recall, I went last year in November. It was such an amazing trip and I met some of the most wonderful and inspiring women ever. I am still trying to raise the money so that I can buy my plane ticket, but I'm hopeful that I'll be able to buy it in the next week or so with the amount of orders I've had come in for my crochet items.
I'm so sorry I've been so slack about posting new blog updates. Since we have a Facebook page for Aidan, we tend to update that more because it's just a quick blurb and so many people use it. We're so glad that so many people read this blog and have been touched or inspired by Aidan and our story.
Thank you for your continued prayers and support!
God Bless!
~Erin
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