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| In the van and ready to roll! |
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| Andy, Beau and Amanda |
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| Beau and daddy riding the train. Always a favorite. |
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| Anticipating a fun ride on the raging river! |
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| Beau loving his ride on the raging river.
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Beau
Our "Beau"tiful Blessing
Friday, November 9, 2012
A Trip to Adventureland
On September 1st we made the quick drive to Adventureland in Altoona, Iowa. We loaded up the van with our friends and headed to Altoona. Delaney sat this one out and went to spend the day with grandma and grandpa DeWitt. Lucky little man Beau got his mommy and daddy all to himself that day! It was so much fun and watching Beau smile non-stop that day was a blessing. The other blessing - spending the day with another great family!
What a great day and one that won't soon be forgotten. It definitely needs to be an annual event. I can't think of a better way to celebrate these two amazing boys every year!
Delaney's Baptism - Beau Steals the Show (and a few hearts)
Beau's beautiful little sister Delaney was baptized on Sunday September 9th. It was a gorgeous day out with plenty of sunshine and Delaney did great. Probably my favorite part of the day was Beau going up front for the children's part of the service. This was something completely new to Mr. Beau and as a result it was quite fun to see how he reacted to all of it. God bless his cousin Lexi for putting up with him (as you'll see in some of the pictures from that day).
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| Trisha baptizing Delaney Grace. |
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| Trisha doing the children's part of the service. Watch the pictures of Beau - he's full of mischief! |
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| Not so sure about this....... |
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| Ok, this may not be so bad..... |
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| This is actually pretty fun...... |
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| Hi family!!!! |
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| Looking full of it!!! |
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| And let's get Lexi's hair...... |
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| And finally he decides to stand up and smile at everyone. Love it - never a dull moment with Beau Beau. |
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| Delaney with her Godparents, Uncle Jason and Aunt Gabbi |
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| Our Family |
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| Beau loves his baby sister. |
It was a great day and Beau definitely stole the show that morning. Such a sweet, sweet boy. Love these kids!
Friday, November 2, 2012
Take me off the list please......
Believe me, I have my moments like so many others dealing with something difficult in their life. In my case, it's raising a special needs child. Shortly after Beau's diagnosis I was made aware of a ListServ, mass emailing group for parents, those diagnosed with and family members dealing with ACC. I thought that it might be good to join to see what others were going through and maybe provide me with a glimpse of what the future might hold (that was also a crazy thought since all of these children are so different). That was my thinking early on in Beau's diagnosis. As with anything like a life changing diagnosis, a death, a trauma, etc. there are stages of grieving. Everyone approaches those stages at different times and there is no set timetable that you are supposed to go through each stage. I remember those early stages and I remember the other traumas that we were going through at that time that compounded the emotions; a miscarriage from a partial molar pregnancy, possible uterine cancer, bankruptcy, losing our house, etc. Life was anything but fair that year and yes I realize some of it was our own fault but it still was rough.
There have been many times here lately where I have wondered if there is something wrong with me. I say that because I had been reading several of the posts on the ListServ (and not reading several others). There are soooo many emails that go through the ListServ and if I see certain subject lines I would just delete them. Let me preface what I'm about to say with this: I understand the process that we are all going through, I understand that some parents are dealing with a lot more problems than we deal with, with Beau, I understand the daily struggles of dealing with a special needs child, I understand that we have to make decisions that aren't fun, I understand that we know our way around specialty hospitals and know more doctors and specialists than we care to know, I understand we are scared about what the future holds, I understand it completely SUCKS some days.............BUT there comes a time where you need to move past the self pity and just deal with it. I know that probably sounds heartless but I can say it because I'm on the inside; I'm not some outsider looking in.
Last week I requested to be taken off the ListServ. I couldn't hear/see any more of the negativity and pity parties, especially from folks that have children that were diagnosed 10 plus years ago. I remind myself everyday that there are always others that have it worse - including us ACC parents. Believe it or not, there are other families with bigger struggles. There are families that have children dying from cancer - I'd say we're lucky in that respect. It's all about perspective and putting things into it. We all have our days and I know that there will be more times along the path with Beau that I will cry at night for what he is going through and because we didn't get to raise a "typical" son, BUT I always have to come back to reality and know that I am better off today for God's wonderful gift of Beau. And I realize that God entrusted me with Beau's care for a very special reason. I decided early on that I couldn't change what was happening with Beau. I took those tears and poor me attitude and transformed it into Beau's Beautiful Blessings, our non-profit that raises money for kids in the state of Iowa that have brain abnormalities, brain injuries and/or epilepsy. I received a call yesterday from a dog trainer that is training a service dog for a little boy that has P-ACC, like Beau, and we are the organization paying for the dog. Herky, the dog, is doing amazing with his training and should be "home" for Christmas with this wonderful little boy who really needs this dog. WE, Beau's Beautiful Blessings and its friends and donors, made that possible by turning negativity and self pity into something so incredible. It's about being proactive and giving back and being grateful for all that you DO have.
I've rambled on and made my controversial opinion known so I'll stop for today. I have learned that it is OK to be happy and not be sad about your child's life changing diagnosis. Please don't ge me wrong I still have my days where I get down and that is to be expected, I'm just saying I don't cry and complain every day because of the cards we have been dealt! Go out, educate and create awareness for these kids!
There have been many times here lately where I have wondered if there is something wrong with me. I say that because I had been reading several of the posts on the ListServ (and not reading several others). There are soooo many emails that go through the ListServ and if I see certain subject lines I would just delete them. Let me preface what I'm about to say with this: I understand the process that we are all going through, I understand that some parents are dealing with a lot more problems than we deal with, with Beau, I understand the daily struggles of dealing with a special needs child, I understand that we have to make decisions that aren't fun, I understand that we know our way around specialty hospitals and know more doctors and specialists than we care to know, I understand we are scared about what the future holds, I understand it completely SUCKS some days.............BUT there comes a time where you need to move past the self pity and just deal with it. I know that probably sounds heartless but I can say it because I'm on the inside; I'm not some outsider looking in.
Last week I requested to be taken off the ListServ. I couldn't hear/see any more of the negativity and pity parties, especially from folks that have children that were diagnosed 10 plus years ago. I remind myself everyday that there are always others that have it worse - including us ACC parents. Believe it or not, there are other families with bigger struggles. There are families that have children dying from cancer - I'd say we're lucky in that respect. It's all about perspective and putting things into it. We all have our days and I know that there will be more times along the path with Beau that I will cry at night for what he is going through and because we didn't get to raise a "typical" son, BUT I always have to come back to reality and know that I am better off today for God's wonderful gift of Beau. And I realize that God entrusted me with Beau's care for a very special reason. I decided early on that I couldn't change what was happening with Beau. I took those tears and poor me attitude and transformed it into Beau's Beautiful Blessings, our non-profit that raises money for kids in the state of Iowa that have brain abnormalities, brain injuries and/or epilepsy. I received a call yesterday from a dog trainer that is training a service dog for a little boy that has P-ACC, like Beau, and we are the organization paying for the dog. Herky, the dog, is doing amazing with his training and should be "home" for Christmas with this wonderful little boy who really needs this dog. WE, Beau's Beautiful Blessings and its friends and donors, made that possible by turning negativity and self pity into something so incredible. It's about being proactive and giving back and being grateful for all that you DO have.
I've rambled on and made my controversial opinion known so I'll stop for today. I have learned that it is OK to be happy and not be sad about your child's life changing diagnosis. Please don't ge me wrong I still have my days where I get down and that is to be expected, I'm just saying I don't cry and complain every day because of the cards we have been dealt! Go out, educate and create awareness for these kids!
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| My happy boy Beau with daddy. |
Friday, October 26, 2012
Neurology Visit September 2012
Due to my crazy life as a working mom with a 3 month old and a 4 1/2 year old, blogging takes a back seat! BUT.....I wanted to update everyone on Beau's latest visit to his amazing neurologist, Dr. Joshi.
For the most part, Beau is doing well, we see little improvements here and there. To others raising "typical" children these improvements wouldn't even be noticed, but to us, they are huge accomplishments. Beau is adding more sign language to his vocabulary and a lot of it, he is creating on his own. We are working on teaching him the signs for"I want" and "I love" and then letting him fill in the blank at the end. He is currently on the max amount of Keppra and Depakote for his weight. If the seizures break through, or should I say, WHEN they break through, the next step is to add lamictal and wean off of Keppra, keeping him on the Depakote. After that there is another drug she has up her sleeve which he would be placed on. All in all, Dr. Joshi said she doesn't want to see a plateau; she wants to continue to see improvements.
Here is what Dr. Joshi tells us: According to the "criteria" (not sure whose criteria - I suppose the University of Iowa) Beau is a candidate for the brain/grid mapping procedure to determine if he could have surgery to attempt to eliminate the seizures. Subdural grid electrodes would be placed directly on the brain. Beau has had the inpatient EEG's and the PET scan (while being placed under anesthesia he had a seizure). The exact location of his seizures can't be determined with 100% certainty from those tests. They are showing really close to midline and that could indicate the activity traveling back and forth between both halves of the brain. That would mean Beau wouldn't be a surgical candidate to have the abnormal section removed. She is also concerned with the fact that the area she thinks may be causing the seizures is located just to the left of midline extremely close to the function of his right leg. Remove a section in that area and if you go too far one way or the other he looses function in his right leg. In order to determine whether surgery is an option, he would have to have "surgery" to have the grid electrodes placed directly on his brain. Google the pictures, think about it and know it seems like a very scary thing to see your child go through. His head would then be wrapped after the procedure and he would remain in the PICU until (after being removed from his medications) he had a seizure. Having the seizure would give the doctors the answers they need. If it is in an area that they don't feel can be removed, then he would be taken back to surgery, sewn back up and a VNS placed. A VNS is a vagal nerve stimulator. From www.epilepsy.com I found the following explanation of VNS:
Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.
The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck. The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.
IF it turned out Beau was a brain surgery candidate, he would be taken to the OR, the grids removed, the "bad" spot of the brain removed and then he would be closed back up. The hope would be the seizures would stop and that his right leg function would be maintained.
Here is my question - why the hell do Andy and I have to even think about this? Why should I have to make such a life changing decision for someone else? It feels almost as if you are playing God by choosing or not choosing grid mapping/surgery etc. Although Andy AND I really aren't thinking about it - Andy refuses to think about it and understandably so. I keep pushing it to the back of my mind as well. Dr. Joshi is ready to do this at any time because she knows, and so do we, that eventually we are going to run out of drug options for Beau. She assures me that his personality would not be affected if that particular portion of the brain had to be removed. But, what no one can assure me is that any of these procedures would go off without a hitch. So much to think about but we will continue to let this possibility sit at the back of our minds for right now, focusing on the here and now and the incredible little boy we affectionately refer to as Beau Beau.
For the most part, Beau is doing well, we see little improvements here and there. To others raising "typical" children these improvements wouldn't even be noticed, but to us, they are huge accomplishments. Beau is adding more sign language to his vocabulary and a lot of it, he is creating on his own. We are working on teaching him the signs for"I want" and "I love" and then letting him fill in the blank at the end. He is currently on the max amount of Keppra and Depakote for his weight. If the seizures break through, or should I say, WHEN they break through, the next step is to add lamictal and wean off of Keppra, keeping him on the Depakote. After that there is another drug she has up her sleeve which he would be placed on. All in all, Dr. Joshi said she doesn't want to see a plateau; she wants to continue to see improvements.
Here is what Dr. Joshi tells us: According to the "criteria" (not sure whose criteria - I suppose the University of Iowa) Beau is a candidate for the brain/grid mapping procedure to determine if he could have surgery to attempt to eliminate the seizures. Subdural grid electrodes would be placed directly on the brain. Beau has had the inpatient EEG's and the PET scan (while being placed under anesthesia he had a seizure). The exact location of his seizures can't be determined with 100% certainty from those tests. They are showing really close to midline and that could indicate the activity traveling back and forth between both halves of the brain. That would mean Beau wouldn't be a surgical candidate to have the abnormal section removed. She is also concerned with the fact that the area she thinks may be causing the seizures is located just to the left of midline extremely close to the function of his right leg. Remove a section in that area and if you go too far one way or the other he looses function in his right leg. In order to determine whether surgery is an option, he would have to have "surgery" to have the grid electrodes placed directly on his brain. Google the pictures, think about it and know it seems like a very scary thing to see your child go through. His head would then be wrapped after the procedure and he would remain in the PICU until (after being removed from his medications) he had a seizure. Having the seizure would give the doctors the answers they need. If it is in an area that they don't feel can be removed, then he would be taken back to surgery, sewn back up and a VNS placed. A VNS is a vagal nerve stimulator. From www.epilepsy.com I found the following explanation of VNS:
Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.
The VNS device is sometimes referred to as a "pacemaker for the brain." It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck. The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.
IF it turned out Beau was a brain surgery candidate, he would be taken to the OR, the grids removed, the "bad" spot of the brain removed and then he would be closed back up. The hope would be the seizures would stop and that his right leg function would be maintained.
Here is my question - why the hell do Andy and I have to even think about this? Why should I have to make such a life changing decision for someone else? It feels almost as if you are playing God by choosing or not choosing grid mapping/surgery etc. Although Andy AND I really aren't thinking about it - Andy refuses to think about it and understandably so. I keep pushing it to the back of my mind as well. Dr. Joshi is ready to do this at any time because she knows, and so do we, that eventually we are going to run out of drug options for Beau. She assures me that his personality would not be affected if that particular portion of the brain had to be removed. But, what no one can assure me is that any of these procedures would go off without a hitch. So much to think about but we will continue to let this possibility sit at the back of our minds for right now, focusing on the here and now and the incredible little boy we affectionately refer to as Beau Beau.
Thursday, August 30, 2012
Happy
Even with everything that Beau goes through he is the happiest child I have ever met. He can't talk so his expressions and eyes are his words and they speak volumes.
Taking a fall....
Here's the result of poor balance and frequent falls - a big ole' black eye! Poor boy!
Beau's First Day of Preschool for 2012 - August 17th
My handsome young man on his first day of preschool for this school year. As you can see he was happy to return to his same teacher and same school once again this year.......Pretty darn cute if I do say so myself!
To get him to smile and ham it up for the camera I had to hold a mirror in front of me. For those of you that know Beau you know that he loves mirrors and is constantly watching himself do things in front of mirrors. He also likes to check out his butt in the mirror - not even kidding - so you see him checking out his behind and his new backpack. His expressions are priceless!
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