Dear Letters to Jakey Readers,
The blog can now be found at http://www.letterstojakey.wordpress.com/. This site allows you to choose to be notified when there is a new post if you want. Thanks for reading about us!
Heather and Jakey
Sunday, November 14, 2010
Thursday, November 11, 2010
Lunch in Room 1
Dear Jakey,
I have had the best time the last two days spending time with you in your class. In the 18 months that you have been at Prospect I haven't been active in your classroom. It is usually just dropping off or picking up with the occasional stops in the observation room. It has never lent itself to the kind of experiences that I have had with Ethan's school - like volunteering to help out, bring in snacks or birthday cupcakes, helping with centers or any other stuff. But now I have gotten the chance to eat lunch with you and your friends and I have loved every minute of it.
I have always known that Logan is your good buddy but to spend time with him and watch him cheer you on as you eat has been amazing. And Zander really looks out for you too. He is such a caring soul - not missing a thing and making sure you are doing okay. He likes to know what you are eating, how you are doing and where you are going once you leave. Teaching your teachers to feed you has been something else though. You certainly were being stubborn with Beth yesterday. I think they all thought it would be so easy but now realize that it is in fact pretty hard. Especially when you refuse to swallow. Could you hear Logan when he kept yelling out "Swallow, Jake, swallow" ? It was like he was your own personal cheerleader. And then when Zander jumped in with his own cheer: "Eat, Jake, eat!" I hope you start making it a little easier for them tomorrow!
Anyways, I hope you realize how I enjoy spending time with you in your classroom. I didn't realize how much I was missing out on until I got to do it. I hope after your teachers are trained to feed you I can still come in every once in a while - I love lunch in Room 1!!!
Love,
Mommy
I have had the best time the last two days spending time with you in your class. In the 18 months that you have been at Prospect I haven't been active in your classroom. It is usually just dropping off or picking up with the occasional stops in the observation room. It has never lent itself to the kind of experiences that I have had with Ethan's school - like volunteering to help out, bring in snacks or birthday cupcakes, helping with centers or any other stuff. But now I have gotten the chance to eat lunch with you and your friends and I have loved every minute of it.
I have always known that Logan is your good buddy but to spend time with him and watch him cheer you on as you eat has been amazing. And Zander really looks out for you too. He is such a caring soul - not missing a thing and making sure you are doing okay. He likes to know what you are eating, how you are doing and where you are going once you leave. Teaching your teachers to feed you has been something else though. You certainly were being stubborn with Beth yesterday. I think they all thought it would be so easy but now realize that it is in fact pretty hard. Especially when you refuse to swallow. Could you hear Logan when he kept yelling out "Swallow, Jake, swallow" ? It was like he was your own personal cheerleader. And then when Zander jumped in with his own cheer: "Eat, Jake, eat!" I hope you start making it a little easier for them tomorrow!
Anyways, I hope you realize how I enjoy spending time with you in your classroom. I didn't realize how much I was missing out on until I got to do it. I hope after your teachers are trained to feed you I can still come in every once in a while - I love lunch in Room 1!!!
Love,
Mommy
Mother's Instincts
Dear Jakey,
We sit together and wait. Again. Just when I think we are going along all right, we get a wrench thrown at us. At least we know what to do, right?
I hate it when I get those feelings though that something is wrong. I always just wish it was me being crazy but when it seems like I might be right it sucks, I would much rather be wrong. It is times like that that I wish we could talk to each other and I could really know what was wrong. I know that when you flinch and move around it means you are uncomfortable so I know what you are trying to tell me on the larger scale. I just wish you could be more specific! Or at least let me know if we are close. We got the x-ray report last night and unfortunately I have much less experience making sense of those reports so I am mostly unsure of what it says. I know it is not the worst case scenerio since nothing is dislocated or broken but I am not sure about the sublexation. I am pretty sure there wasn't any in July. And that is why we wait. I have faxed it to Dr. Grottkau so hopefully we will get a call soon. Either way we will get through it. I just wish you would catch a break - maybe you will this time.
Love, Mommy
We sit together and wait. Again. Just when I think we are going along all right, we get a wrench thrown at us. At least we know what to do, right?
I hate it when I get those feelings though that something is wrong. I always just wish it was me being crazy but when it seems like I might be right it sucks, I would much rather be wrong. It is times like that that I wish we could talk to each other and I could really know what was wrong. I know that when you flinch and move around it means you are uncomfortable so I know what you are trying to tell me on the larger scale. I just wish you could be more specific! Or at least let me know if we are close. We got the x-ray report last night and unfortunately I have much less experience making sense of those reports so I am mostly unsure of what it says. I know it is not the worst case scenerio since nothing is dislocated or broken but I am not sure about the sublexation. I am pretty sure there wasn't any in July. And that is why we wait. I have faxed it to Dr. Grottkau so hopefully we will get a call soon. Either way we will get through it. I just wish you would catch a break - maybe you will this time.
Love, Mommy
Saturday, November 6, 2010
Luck
Dear Jakey,
In the last week I have had the opportunity to think even more about how lucky I am. Now for a long time "lucky" is the last word I would have used to describe our situation. In fact I often asked the "what did I do to deserve this?" type questions. Somewhere along the line though my thinking changed. And I know that I am lucky. This is not to say that I am always positive about it - as you know first hand when you hear me mutter words under my breath that I shouldn't say in front of you. Like this morning when I had to make your meals and the magic bullet broke and I had to start all over. Or when my mathematical configurations are off and I need to start over so that your meals stay in the right ratio. Or twice a day when I have to give meds and I am reminded that our life is different (not bad, just different.) Life is hard and while I know all moms think life with kids is hard, I reserve the right to say that our kinds of worries are a different kind of hard. And I'll even go as far as to say harder because I know life with a "healthy kid" too - and I know all that comes with that. And I know that Ethan sometimes is harder than you but even then it is different.
But I digress, because this is about how I am in fact lucky. Lucky to know you and love you first hand. Lucky to be the person in the front line for all the ups and downs. And lucky because I can't imagine anyone else ever being prouder than I am of you. In the last week, we had two special things happen. The first one came from one of Mommy's friends from Boston - someone Mommy worked with way before you were born and even before Ethan was born. She'd been feeling pretty lucky lately too so was making wishes - she wished for you to have an amazing Halloween. Isn't that cool - someone you haven't even met is wishing you great things? That is lucky. And for what it is worth - I think you did have a pretty amazing Halloween.
And then a few days later, Mommy got a note from Spunky's sister. Another person who has never met you but who has been impacted by you and just wanted to say thanks. You should know that that doesn't happen to everyone - we've talked about it before but you do have a profound effect on people and that is something special. And that is why I have learned to feel lucky - I am your mom and get to be impacted by you each and every day. I love you so much my little peanut.
Love,
Mommy
In the last week I have had the opportunity to think even more about how lucky I am. Now for a long time "lucky" is the last word I would have used to describe our situation. In fact I often asked the "what did I do to deserve this?" type questions. Somewhere along the line though my thinking changed. And I know that I am lucky. This is not to say that I am always positive about it - as you know first hand when you hear me mutter words under my breath that I shouldn't say in front of you. Like this morning when I had to make your meals and the magic bullet broke and I had to start all over. Or when my mathematical configurations are off and I need to start over so that your meals stay in the right ratio. Or twice a day when I have to give meds and I am reminded that our life is different (not bad, just different.) Life is hard and while I know all moms think life with kids is hard, I reserve the right to say that our kinds of worries are a different kind of hard. And I'll even go as far as to say harder because I know life with a "healthy kid" too - and I know all that comes with that. And I know that Ethan sometimes is harder than you but even then it is different.
But I digress, because this is about how I am in fact lucky. Lucky to know you and love you first hand. Lucky to be the person in the front line for all the ups and downs. And lucky because I can't imagine anyone else ever being prouder than I am of you. In the last week, we had two special things happen. The first one came from one of Mommy's friends from Boston - someone Mommy worked with way before you were born and even before Ethan was born. She'd been feeling pretty lucky lately too so was making wishes - she wished for you to have an amazing Halloween. Isn't that cool - someone you haven't even met is wishing you great things? That is lucky. And for what it is worth - I think you did have a pretty amazing Halloween.
And then a few days later, Mommy got a note from Spunky's sister. Another person who has never met you but who has been impacted by you and just wanted to say thanks. You should know that that doesn't happen to everyone - we've talked about it before but you do have a profound effect on people and that is something special. And that is why I have learned to feel lucky - I am your mom and get to be impacted by you each and every day. I love you so much my little peanut.
Love,
Mommy
Wednesday, November 3, 2010
Tests
Dear Jakey,
It is funny how things work out. We were so dreading this visit, or at least Mommy was. I hated the idea of having to go to Children's and hated the idea of seeing Dr. Fulton. I was completly anxious and worked up and for once, it all turned out fine, it actually even turned out well. Go figure. Walking through the door at Children's still makes me feel like puking but I am not sure that will ever change. Last night I kept wishing that I could be inside your brain and know what you were thinking about. Were you as anxious as I was? You didn't sleep well - maybe it was nerves, or maybe it was my nerves rubbing off on you. I suspect that is closer to the truth.
You did such a good job with all those tests though. So much testing for my little guy. Daddy did a great job keeping you positioned right for all the different tests, especially the photographs and it reminded me how strong he is for all of us. He knows when we need him the most and steps it up.
How crazy was it that they got those pictures of the back of your eye? When I was telling Ethan about it I think he was kind of jealous - and impressed when I told him that it sort of looked like a cross between the moon and mars. Anyways, it was pretty cool for me to watch you and you made me so proud, but nervous too. It was weird not being able to answer for you and have to just be quiet and let them see what you did on your own. I am not used to that. But you did great and played well with everone.
And the best part is that you can see. You already knew that but we weren't always sure. Although I always believed you could see some things, some of the time - not it is confirmed. The best part is that while you don't see great, you do see and the potential to see more is there. We like ptoential and we have more information to share with all your teachers, therapists and friends to make your learning easier on you. Ethan was so excited to know for sure that you can see and got right in your face almost as if to test it out. I can't wait until that left arm of yours gets a little stronger and you can knock him out of the way! I hope you understood how proud we all were of you during the tests. You need to know how much we love you and how proud you made us today. I know using your eyes that long made you tired but you did everything they asked of you and it is just one more reason I know you are a rockstar.
Love,
Mommy
It is funny how things work out. We were so dreading this visit, or at least Mommy was. I hated the idea of having to go to Children's and hated the idea of seeing Dr. Fulton. I was completly anxious and worked up and for once, it all turned out fine, it actually even turned out well. Go figure. Walking through the door at Children's still makes me feel like puking but I am not sure that will ever change. Last night I kept wishing that I could be inside your brain and know what you were thinking about. Were you as anxious as I was? You didn't sleep well - maybe it was nerves, or maybe it was my nerves rubbing off on you. I suspect that is closer to the truth.
You did such a good job with all those tests though. So much testing for my little guy. Daddy did a great job keeping you positioned right for all the different tests, especially the photographs and it reminded me how strong he is for all of us. He knows when we need him the most and steps it up.
How crazy was it that they got those pictures of the back of your eye? When I was telling Ethan about it I think he was kind of jealous - and impressed when I told him that it sort of looked like a cross between the moon and mars. Anyways, it was pretty cool for me to watch you and you made me so proud, but nervous too. It was weird not being able to answer for you and have to just be quiet and let them see what you did on your own. I am not used to that. But you did great and played well with everone.
And the best part is that you can see. You already knew that but we weren't always sure. Although I always believed you could see some things, some of the time - not it is confirmed. The best part is that while you don't see great, you do see and the potential to see more is there. We like ptoential and we have more information to share with all your teachers, therapists and friends to make your learning easier on you. Ethan was so excited to know for sure that you can see and got right in your face almost as if to test it out. I can't wait until that left arm of yours gets a little stronger and you can knock him out of the way! I hope you understood how proud we all were of you during the tests. You need to know how much we love you and how proud you made us today. I know using your eyes that long made you tired but you did everything they asked of you and it is just one more reason I know you are a rockstar.
Love,
Mommy
Monday, November 1, 2010
Bye Bye Clobazam
Dear Jakey,
As I write this you lay next to me sleeping. You look so grown up to me - maybe it is just the haircut but I am feeling so proud of you tonight. While you were still at school today, Mommy and Daddy met with all your therapists at Prospect. Everyone has noticed such a change in you and how you are so much more alert and awake. It was a great meeting and next week I am going to start working with Stephanie, Heather and Beth to feed you lunch there. I am pretty nervous but also so excited. Mostly excited for you so that you don't have to be so dependent on me to eat and you can stay for the full day of school some days. More time to hang out with Logan and Zander. After school today you had Xavier and Karen - a busier than usual Monday and I was sure you would sleep all through Karen but you didn't. You worked so hard today. I am so proud of you my guy.
Well I know you have always had it in you to be more alert and more of a participant in your own life. I recognize all thsi greatness and know it is coming back to you because we are stopping clobazam. This Thursday (3 more sleeps as Ethan would say) will mark your very last night of clobazam ever. It is so exciting when we stop a med and just know it is the right thing. It is so hard to believe you were on it for 3 and 1/2 years - I remember like it was yesterday when you started on it. It was the first drug out of something like 13 that made you stop moving. Back in those days you twitched and moved nonstop - Clobazam gave you 12 minutes of peace that very first day and I am grateful for all it did for you back then. You are stronger and more stable now and don't need it anymore and I am most grateful for that.
Sleep well my little buddy - we have a big day tomorrow.
Love,
Mommy
As I write this you lay next to me sleeping. You look so grown up to me - maybe it is just the haircut but I am feeling so proud of you tonight. While you were still at school today, Mommy and Daddy met with all your therapists at Prospect. Everyone has noticed such a change in you and how you are so much more alert and awake. It was a great meeting and next week I am going to start working with Stephanie, Heather and Beth to feed you lunch there. I am pretty nervous but also so excited. Mostly excited for you so that you don't have to be so dependent on me to eat and you can stay for the full day of school some days. More time to hang out with Logan and Zander. After school today you had Xavier and Karen - a busier than usual Monday and I was sure you would sleep all through Karen but you didn't. You worked so hard today. I am so proud of you my guy.
Well I know you have always had it in you to be more alert and more of a participant in your own life. I recognize all thsi greatness and know it is coming back to you because we are stopping clobazam. This Thursday (3 more sleeps as Ethan would say) will mark your very last night of clobazam ever. It is so exciting when we stop a med and just know it is the right thing. It is so hard to believe you were on it for 3 and 1/2 years - I remember like it was yesterday when you started on it. It was the first drug out of something like 13 that made you stop moving. Back in those days you twitched and moved nonstop - Clobazam gave you 12 minutes of peace that very first day and I am grateful for all it did for you back then. You are stronger and more stable now and don't need it anymore and I am most grateful for that.
Sleep well my little buddy - we have a big day tomorrow.
Love,
Mommy
Thursday, October 28, 2010
White Matter
Dear Jakey,
Dr. Browning called yesterday and left us two messages - one at home and one on my cell. Both messages started the same way "I've got great news!!". Well, her great news is that Dr. Florian Eichler has agreed and is excited to take you on as a patient. Just goes to show how great news is a relative term. Yes, it is great and I am thrilled that the country's expert in white matter and leukodystrophies is willing to help us figure things out. However, I would have preferred him to say that after looking at all but one of your MRI's he did not find you all that interesting and that you in fact most definitely do not having white matter issues and definitely do not have some insanely rare leukodystrophy. That would really have been the great news.
But that was not the case, so we have yet another new doctor visit with another new set of eyes to examine you. They wanted us to come out on November 10th but sometimes Mommy has to draw the line. We are going next week for the VEP and I explained that we would prefer to do it on either November 3rd or December 15th since he only sees patients on Wednsdays. I just can't see going back and forth and have learned that a month will likely not change much yet the constant disruption in your life does. So unless I hear otherwise - you will meet Dr. Eichler in December and we will spend a solid 4 days with everything from your brain to your hips being examined by the best. And in between November 3rd and December 13th, I promise you lots of normal, family fun without doctor's using you as their research project.
Love,
Mommy
Dr. Browning called yesterday and left us two messages - one at home and one on my cell. Both messages started the same way "I've got great news!!". Well, her great news is that Dr. Florian Eichler has agreed and is excited to take you on as a patient. Just goes to show how great news is a relative term. Yes, it is great and I am thrilled that the country's expert in white matter and leukodystrophies is willing to help us figure things out. However, I would have preferred him to say that after looking at all but one of your MRI's he did not find you all that interesting and that you in fact most definitely do not having white matter issues and definitely do not have some insanely rare leukodystrophy. That would really have been the great news.
But that was not the case, so we have yet another new doctor visit with another new set of eyes to examine you. They wanted us to come out on November 10th but sometimes Mommy has to draw the line. We are going next week for the VEP and I explained that we would prefer to do it on either November 3rd or December 15th since he only sees patients on Wednsdays. I just can't see going back and forth and have learned that a month will likely not change much yet the constant disruption in your life does. So unless I hear otherwise - you will meet Dr. Eichler in December and we will spend a solid 4 days with everything from your brain to your hips being examined by the best. And in between November 3rd and December 13th, I promise you lots of normal, family fun without doctor's using you as their research project.
Love,
Mommy
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