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Archive for October, 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

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Good Times

Dear Jakey,

Mommy is working on a project which is requiring her to spend time looking through old pictures. I have just gone back from today all the way back to your birth. Wow – what a life you have led and are continuing to lead. Part of me wanted to be sad when I saw the pictures at the hospital when you were born and your crazy 15 month old brother kissing you up. And the pictures of you in your first house in Dorchester, and your first Halloween as a shark, and you playing with Ava and Ethan, and your trip to Toronto and to Argentina, and you loving up Alcira. And then all those pictures of you in and out of comas, with all sorts of tubes and all sorts of doctors and therapists. And then so many more pictures – you as a spider, as a monkey and then as a police officer. You and your brother snuggling in all kinds of crazy jammies. Pictures of you working so hard to get strong  – with Karen, Xavier, Linda and Cynthia. Countless pictures of you being loved by everyone – me, Daddy, Abue, G-pa, Auntie Yvette. There are just thousands and thousands of pictures of our life together. And I refuse to be sad because while life didn’t turn out the way we planned, it is still pretty damn great. And life with you is wonderful – never boring, sometimes scary and always wonderful. I love each moment that we have spent together as mommy and son. I look forward to many many more. You are the best four year old I know.

Love,
Mommy

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New Friends

Dear Jakey,

It is not only Ethan that is making the transition to Lake Ave and his new kindergarten life. We all have to adapt. He has made the transistion with such ease that I can’t help be proud and impressed by him. Today was a big step for us – well, more for me because I am not sure that you are as awkward as me. When I take you to pick up Ethan we have had a few of the typical  – “he is so sleepy” , “i wish my kids napped like that” comments but not too much and easy to deal with. Today was our first birthday party and I feel bad because I did try to make it so you couldn’t come – I am sorry buddy, I know I talk about including you more but sometimes I want to take the easy way out. Anyways, Kate and Cait were busy so we went to Paulie’s birthday which was all new families to us. While I had a met a few people before or spoke with them on the phone it was the first time we would really engage in the “mom chitchat”. We met a bunch of nice people and I really can see becoming friendly with Paulie’s mom but I never know what to say about you or when to bring up that you are sick. She asked how old you were and was excited when I said 4 because her daughter (who was running around having a blast) is 3. She saw potential playmates while I knew that wouldn’t be the case. We got the usual sleepy comments and I know people were wondering what was up. It just seems random though to bring up because it isn’t really obvious right away. What should I do Jakey? If you were me, what would you do? It would be so much easier if you could tell me!!!

I don’t want to hurt your feelings and I don’t want to ignore you. Over time we will get through this transition too. I just hadn’t thought about how we would me making new friends too. We are so lucky to have good friends that have known you even before the seizures – Uncle Steve, Aunty Spunkie, Christy and Rob, Briana and Trish. And then so many who have gotten to know you since you were so much younger – Kelly, Sharon, Kirsten and Mike, Carolyn and Bridget . We are lucky to be surrounded by good people. I know we will be bringing more into our world – I just hope they realize how lucky they are to be included in yours!

Love,
Mommy

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Poop

Dear Jakey,

This is probably too much information for many but I can not believe how much I have to think, analyze and share information about your poop. Cait and Kate have come to expect it. I end up bringing it up to “normal” people and they must think I am a real wack job. But really – so much has to do with whether you poop or not. I was just now watching you sleep and you had a pretty big seizure (by your standards anyways) and it reminded me that you haven’t pooped since Saturday. I am pretty dissappointed because I thought we had it back under control since you went three times on your own last week. But now we are backed up again. We are also running out of options  – we got the new keto liquid complete with extra fiber – I make all your meals daily with coconut oil (which is a reall pain in the you know what, no offense). I am scared to keep using mineral oil because of the whole issue with people and neuromuscular disorders AND we have to be careful with miralax because of that weird breathing thing that happens to you on it. Dr. Thiele and Heidi get ticked when I use suppositories with you because they say it is addicting – although i think that would be the least of your problems. Anyways, just make my day Jakey and POOP!

Love,
Mommy

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Junky

Dear Jakey,

So it has been a week and you are still not all the way better. What is up with that? I thought we were getting through this one easier, did you change your mind and forget to let me know? Here we are  – getting closer to the end of the week and I am going back and forth with if I need to take you back in to see Dr. Hawthorne. You’ve been to school all week, although mostly sleeping through it and you sound way worse now than the last few days. I am hoping Karen can pound some of it out of you. I think we also need to do regular nebs. Maybe you are just protesting Daddy going away again?

Get better little buddy.
Love,
Mommy

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Big vs. Little

Dear Jakey,

Our life always seems to change focus in somewhat big swings. It was only last week that Mommy was talking to Dr. Browning with some degree of frequency and we were so focused on a diagnosis. Then you got sick, and that has fallen to the back burner. I know that yesterday Dr. Browning, Dr. Caruso and a lot of other neuro-radiologists were spending time talking about you. It just didn’t seem as urgent to me to find out what they said or what they learned. Today I feel like we are still focusing on the smaller yet super important things – we need to make sure you get all the way better, make sure you eat well and enough, finish your antiobiotics, start Vimpat tomorrow and all those kind of things. A diagnosis doesn’t really fit on our to do list this week. Maybe next week.

Love,
Mommy

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Ethan’s wishes

Dear Jakey,
You must have been on your brother’s mind a lot last night. On the way to soccer last night, while you were home with Cait, he announced that he wished you could play soccer with him and be on the same team. It caught me off guard but I agreed with him. I would be so happy to be able to watch both my boys run around. Anyways, I asked him why he was thinking about that and he told me that he really wished Caleb knew him because he is so nice and Jake would like him. Sometimes I forget that it isn’t always easy on Ethan either.

This morning he brought it up again. Over breakfast he said that he wished you could walk and run and play soccer. He said again how he wished you could be a polar bear too. When I asked him if he would help you out when you were learning though – he said “oh no  – he’ll have to chase me just like everyone else!”  Maybe Ethan knows something I don’t know – he probably does. I suspect it is annoying with people always having to do things for you and if given the opportunity you’d probably just want to be treated like everyone else.

Love,
Mommy

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