Dear Jakey,
Dr. Browning called yesterday afternoon and somehow I missed the call and just got it about an hour ago. Not sure how I managed to miss that. Anyways, I have called back and we are now waiting for her return call. I may have to page her soon and enter stalker mode. Not sure I can go into a long weekend without hearing back from her.
What do you think she is calling for? Not just to say hi that is for sure. She must have learned something from the biopsy. I wonder what she learned because I can't imagine she would just call without any big news to report. I hope I am not building this up to something bigger than it is but I really would like to hear what she has to say.
Apparently, I have bored you with all this because you have fallen asleep in your stander. You probably have the right idea though and are smart to not get all worked up like Mommy. Regardless of what she says or what we learn, all will remain the same. You will keep being a rockstar and Mommy, Daddy and Ethan will keep loving you up. But a diagnosis would be nice....
Love,
Mommy
Friday, October 8, 2010
Thursday, October 7, 2010
Milestones
Dear Jakey,
I tell you these things because I want you to understand how much I love you. I also want you to realize that I understand how hard you work at certain things each day and I hope you realize that I know every movement you make, every bite you eat and every breath you take is a gift and a milestone. It is kind of hard to explain to others because as a mom you are so used to typical milestones. I'm not going to lie - I can't help feel a twinge of jealousy when I hear other moms reach different milestons - whether it is no more diapers, all kids off to school, leaving kids with grandparents and going on vacation with significant others or even having grown kids out of the house - all these things we will not likely meet and it sucks. BUT that is really only me being selfish and the real reality is that you achieve so many important things each day that I couldn't imagine giving it up. You are strong enough to beat down the seizures, fight the infections and keep on truckin'. Those may not be typical milestones but they are good enough for me. Stay strong little buddy!
Love,
Mommy
I tell you these things because I want you to understand how much I love you. I also want you to realize that I understand how hard you work at certain things each day and I hope you realize that I know every movement you make, every bite you eat and every breath you take is a gift and a milestone. It is kind of hard to explain to others because as a mom you are so used to typical milestones. I'm not going to lie - I can't help feel a twinge of jealousy when I hear other moms reach different milestons - whether it is no more diapers, all kids off to school, leaving kids with grandparents and going on vacation with significant others or even having grown kids out of the house - all these things we will not likely meet and it sucks. BUT that is really only me being selfish and the real reality is that you achieve so many important things each day that I couldn't imagine giving it up. You are strong enough to beat down the seizures, fight the infections and keep on truckin'. Those may not be typical milestones but they are good enough for me. Stay strong little buddy!
Love,
Mommy
Wednesday, October 6, 2010
Seizures suck
Dear Jakey,
What does it feel like to have a seziure? I wish I knew. Last night sucked, huh? Every time you fell asleep, you had one and it woke you up - for hours on end. It seems like it has been a while since they were so bad. I can never figure out what happens when they get so out of control - sometimes I think it is cumulative and a delayed reaction to being so off schedule on Monday. But who knows? Sometimes I think there is no real answer so all my analyzing doesn't really get us anywhere.
It makes me so sad when they screw with you like that though. It's like a bad joke - just when you think that you are finally able to rest, there comes another. I keep thinking position will help but of course it doesn't so I probably only annoy you more by moving you around.
I think we are doing a good thing getting you off the clobazam but you certainly are having more seizures. Selfishly, we all prefer that though to the super sedated way it makes you. Unfortunately you are the one whose opinion counts the most and we have to guess at what it is. I hope we are at least close. The gelastic seizures appear to be back - the ones that make you smile and almost giggle - it is really quite bittersweet because as much as I miss your smile I don't really want to see it when you are having a seizure. At least it makes me think that they don't hurt you though and hell, if it gives you some sort of pleasure then it can't be all bad. Ethan really thinks you are laughing and it makes him feel good that you might be happy.
We are going to start a new med soon - I was hoping to hold out until after we made the next change in clobazam but maybe we will re-consider. It is up to you buddy - let me know however you can. If it means having a few more shitty nights, I'll get the picture and we can start the vimpat sooner. Once again, you are the strongest boy I know.
Lots of love,
Mommy
What does it feel like to have a seziure? I wish I knew. Last night sucked, huh? Every time you fell asleep, you had one and it woke you up - for hours on end. It seems like it has been a while since they were so bad. I can never figure out what happens when they get so out of control - sometimes I think it is cumulative and a delayed reaction to being so off schedule on Monday. But who knows? Sometimes I think there is no real answer so all my analyzing doesn't really get us anywhere.
It makes me so sad when they screw with you like that though. It's like a bad joke - just when you think that you are finally able to rest, there comes another. I keep thinking position will help but of course it doesn't so I probably only annoy you more by moving you around.
I think we are doing a good thing getting you off the clobazam but you certainly are having more seizures. Selfishly, we all prefer that though to the super sedated way it makes you. Unfortunately you are the one whose opinion counts the most and we have to guess at what it is. I hope we are at least close. The gelastic seizures appear to be back - the ones that make you smile and almost giggle - it is really quite bittersweet because as much as I miss your smile I don't really want to see it when you are having a seizure. At least it makes me think that they don't hurt you though and hell, if it gives you some sort of pleasure then it can't be all bad. Ethan really thinks you are laughing and it makes him feel good that you might be happy.
We are going to start a new med soon - I was hoping to hold out until after we made the next change in clobazam but maybe we will re-consider. It is up to you buddy - let me know however you can. If it means having a few more shitty nights, I'll get the picture and we can start the vimpat sooner. Once again, you are the strongest boy I know.
Lots of love,
Mommy
Tuesday, October 5, 2010
Deal?
Dear Jakey,
Last night was G-Pa's golf tournament for the Epilepsy Foundation. You have somehow become the posterboy for epilepsy around here - not sure how or why that happened but a lot of people came out to golf and many came in support of you. I wonder what you think about it. It always seems a little ironic to me because we do these things to raise money and awareness for epilepsy but it seems like these events are hard on you. Your schedule is all off and you have to deal with people making well-intentioned but weird comments. Most of the time you go to sleep and I can't blame you. Sometimes I wish I could join you!
It feels like we pimp out out sometimes and I am always torn up about it. Although for the most part I think the greater good is worth it - raising money and awareness about seizures so you and others can have a better life - all of me doesn't think it is worth it. Sometimes I feel like people use you to feel better about themselves - like "thank god that's not me" or "my child is not that bad". Sometimes people actually say that and while I know they don't mean anything malicious by it, as your momma it makes me feel so defensive and crazy. But again, I keep going back to the greater good - we (and by we, I really mean you) teach people so much about strength, love, priorities, endurance and bravery. You are a rockstar.
So, my boy, I promise that tonight we will be right on schedule -eat when you are supposed to, stand when you are supposed to, and fall asleep when you are supposed to. Your job is the same - eat when I feed you, stay in your stander for an hour today and sleep way better than last night. Sound like a deal?
Love,
Mommy
Last night was G-Pa's golf tournament for the Epilepsy Foundation. You have somehow become the posterboy for epilepsy around here - not sure how or why that happened but a lot of people came out to golf and many came in support of you. I wonder what you think about it. It always seems a little ironic to me because we do these things to raise money and awareness for epilepsy but it seems like these events are hard on you. Your schedule is all off and you have to deal with people making well-intentioned but weird comments. Most of the time you go to sleep and I can't blame you. Sometimes I wish I could join you!
It feels like we pimp out out sometimes and I am always torn up about it. Although for the most part I think the greater good is worth it - raising money and awareness about seizures so you and others can have a better life - all of me doesn't think it is worth it. Sometimes I feel like people use you to feel better about themselves - like "thank god that's not me" or "my child is not that bad". Sometimes people actually say that and while I know they don't mean anything malicious by it, as your momma it makes me feel so defensive and crazy. But again, I keep going back to the greater good - we (and by we, I really mean you) teach people so much about strength, love, priorities, endurance and bravery. You are a rockstar.
So, my boy, I promise that tonight we will be right on schedule -eat when you are supposed to, stand when you are supposed to, and fall asleep when you are supposed to. Your job is the same - eat when I feed you, stay in your stander for an hour today and sleep way better than last night. Sound like a deal?
Love,
Mommy
Sunday, October 3, 2010
Fire Trucks
Dear Jakey,
On Friday, Xavier was here to work with you. You guys were doing your thing in the therapy room and I was in the kitchen. At some point I hear Cait say "Look Ethan, Jake's riding the fire truck" and heard them go in the other room. I ran in to check it out and there you were - sitting on the fire truck with super wide eyes and waving your arms around. Your excitement was contagious. I grabbed my phone to start taking pictures and we were all watching you have fun. Xavier commented on how this was the most movement he had seen from you in a while. You looked awesome and we could all tell you were having fun.
I emailed pictures off to Daddy, Abue and G-Pa and everyone responded the same : "Awesome" "Great"! You really did look like you were thrilled. It got me thinking on how important it is that we remember to include you in all of our play and fun. Sometimes I think it must be annoying to you to have us always have to move you or do things hand-over-hand but you reminded me on Friday that you do like it and that we should keep doing it.
So, I promise to make a point to include you in things in a more active way. We started yesterday when Daddy and Ethan were having their "Mariofest" - you and I joined in. Unfortunately for you, you were teamed up with me and I put us to shame with 0 points and consistent last place finishes. Sorry buddy. Next time we should get Daddy or Ethan to help you. But we did a much better job with table tennis on the Sports Resorts. It is not only good for you to be included in the games we play but great for Ethan too. He is convinced that you are the best basketball and table tennis player ever in the wii since your mii kicks everyone's butt!
Get ready buddy - when I make an apple pie this week, Ethan won't be the only one helping!
Love,
Mommy
On Friday, Xavier was here to work with you. You guys were doing your thing in the therapy room and I was in the kitchen. At some point I hear Cait say "Look Ethan, Jake's riding the fire truck" and heard them go in the other room. I ran in to check it out and there you were - sitting on the fire truck with super wide eyes and waving your arms around. Your excitement was contagious. I grabbed my phone to start taking pictures and we were all watching you have fun. Xavier commented on how this was the most movement he had seen from you in a while. You looked awesome and we could all tell you were having fun.
I emailed pictures off to Daddy, Abue and G-Pa and everyone responded the same : "Awesome" "Great"! You really did look like you were thrilled. It got me thinking on how important it is that we remember to include you in all of our play and fun. Sometimes I think it must be annoying to you to have us always have to move you or do things hand-over-hand but you reminded me on Friday that you do like it and that we should keep doing it.
So, I promise to make a point to include you in things in a more active way. We started yesterday when Daddy and Ethan were having their "Mariofest" - you and I joined in. Unfortunately for you, you were teamed up with me and I put us to shame with 0 points and consistent last place finishes. Sorry buddy. Next time we should get Daddy or Ethan to help you. But we did a much better job with table tennis on the Sports Resorts. It is not only good for you to be included in the games we play but great for Ethan too. He is convinced that you are the best basketball and table tennis player ever in the wii since your mii kicks everyone's butt!
Get ready buddy - when I make an apple pie this week, Ethan won't be the only one helping!
Love,
Mommy
Friday, October 1, 2010
Jake's People
Dear Jakey,
Something special happened today. When Cait came in there was an envelope in the door. It was a letter to you! It was from Linda, your old friend (not old in age, old in that she's known you since you just turned 1). She used to come over and do speech therapy with you. She did a lot to help us with eating and figuring out the tricks to help you swallow and clear the food out of your mouth. Without those tricks, we probably wouldn't be able to feed you by mouth! In your life, you have had many people who have made a big difference. She is one of your people.
I wanted to write the letter she wrote because it was so beautiful, it made Mommy cry which hasn't really been so hard lately. I read it to you before but I want to keep it with the others so we can always go back to it when we need to.
Dear Jake,
Because of this life you have chosen, you will always know the spark of the Divine, as it will never be clouded by envy, pride, greed, or any of the things that keep the rest of us from knowing the real truth of life.
Because of this life you have chosen, you teach us compassion.
Because of this life you have chosen, we learn true selflessness.
Because of this life you have chosen, we learn about unconditional love.
Because of this life you have chosen, we learn what real sacrifice is.
Because of this life you have chosen, you retain your innocence - something each of us needs in order to return to our Father. Your family, friends and teachers receive important lessons that could not otherwise be learned.
You have given us these opportunities, and for this I am grateful.
In peace and love,
Linda
Jakey - you are a strong and beautiful boy, and we are all better people because of you (I know you have heard G-Pa say that a million times).
Love,
Mommy
Something special happened today. When Cait came in there was an envelope in the door. It was a letter to you! It was from Linda, your old friend (not old in age, old in that she's known you since you just turned 1). She used to come over and do speech therapy with you. She did a lot to help us with eating and figuring out the tricks to help you swallow and clear the food out of your mouth. Without those tricks, we probably wouldn't be able to feed you by mouth! In your life, you have had many people who have made a big difference. She is one of your people.
I wanted to write the letter she wrote because it was so beautiful, it made Mommy cry which hasn't really been so hard lately. I read it to you before but I want to keep it with the others so we can always go back to it when we need to.
Dear Jake,
Because of this life you have chosen, you will always know the spark of the Divine, as it will never be clouded by envy, pride, greed, or any of the things that keep the rest of us from knowing the real truth of life.
Because of this life you have chosen, you teach us compassion.
Because of this life you have chosen, we learn true selflessness.
Because of this life you have chosen, we learn about unconditional love.
Because of this life you have chosen, we learn what real sacrifice is.
Because of this life you have chosen, you retain your innocence - something each of us needs in order to return to our Father. Your family, friends and teachers receive important lessons that could not otherwise be learned.
You have given us these opportunities, and for this I am grateful.
In peace and love,
Linda
Jakey - you are a strong and beautiful boy, and we are all better people because of you (I know you have heard G-Pa say that a million times).
Love,
Mommy
Silly Song
Dear Jakey,
When you were little we used to sing you a song. It went like this:
Jake, Jake, Jake
Jake, Jake, Jake
Jake Your Booty
It was pretty catchy and I think you liked it. Daddy refused to sing it but the rest of us did it all the time. Even Miss Briana and Ava. We might have to bring it back.
Love,
Mommy
When you were little we used to sing you a song. It went like this:
Jake, Jake, Jake
Jake, Jake, Jake
Jake Your Booty
It was pretty catchy and I think you liked it. Daddy refused to sing it but the rest of us did it all the time. Even Miss Briana and Ava. We might have to bring it back.
Love,
Mommy
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