Susie and I celebrated a full year of marriage together yesterday.
On our anniversary, 3/26, we got up and shared our gifts with one another. The 1st anniversary is the "paper" anniversary and apparently the flower is the orange blossom and/or pansy...I opted for the orange blossom as the pansy just doesn't sound like "I love my wife" to me, neither did paper until I read that it is representative of the interconnectedness of marriage analagous to the fibers that bind to form the paper. While orange blossoms represent, the fruitfullness of new marriage amongst other things. Anyway, I found myself drawn to these old traditional symbolisms of which I don't know the actual origin.
The day went something like this:
Jack woke up at 3am and Susie got up to feed him. I had hidden love notes on strips of paper all over the house for her to find. One was in Jack's formula container which she found in the night hopefully making the middle of the night feeding a bit more bearable. Later that morning, Susie slowly found about 20 notes hidden throughout the house through the course of the day. Susie had created a paper chain link, which I was instructed I could undo a link of each day until complete. Each link has something written on it for me to read. The first was a note which I will keep to myself. Then at around 9am, we exchanged cards and I gave Susie a Bonsai Orange Tree which actually bears edible Mandarin Oranges and the 1st anniversary flower, orange blossoms. Susie gave me a giant bag filled with different gifts including a Wok which I have been wanting for quite some time. Then, I gave Susie a gift I had planned to give to her at the beach but due to the unavailability of an impromptu babysitter and my own lack of forsight, I was forced to hand it to her directly. I handed her a bottle, actually a vase with a cork in it, stuffed with a paper note. Originally I was going to sneak the bottle down to the waters edge at the beach and tell her I found it there, "a message in a bottle", sticking with the paper theme. Anyway, she opened the bottle and slipped the note out which was tied with a ribbon. She opened the note which had on it a piece of our actual wedding ceremony that we had chosen a year ago, a Native American ceremonial, which read as follows:
Now we will feel no rain, for each of us is shelter for the other. Now we will feel no cold, for each of us is warmth to the other. Now there is no loneliness, for each of us is the companion to the other. Now we are two persons, but there is only one life before us. May beauty surround us both in the journey ahead and through all of our years. May happiness be our companion and our days together be good and long upon the earth.
After that, Jack decided to fuss without much time to be in the moment, as if to say, "you guys will not forget about me even if it is you anniversary". All day, except for a brief stint, Jack was cranky, at which time we were able to eat lunch, a nice lunch I might add. It seemed for a brief moment like we were set to have a great day. Until Jack decided to skip his typical napping schedule, staying awake until almost 3:15 that afternoon. That was 6 straight hours of Jack, who even on a good day which this was not, can be quite the challenge. Anyway, we took Jack on a walk after struggling all day. Both of us at our wits end, wanting to hit something or someone, walking in silence, Jack fell asleep. He awoke at some point, ate some squash, went on another walk with me, ate his bottle with his mom, and finally went to bed for the night.
The grandparents arrived at around 6pm and freed us. We set out, giddy at our sudden freedom like we had just been sprung from a high security prison. We drove quickly to our favorite watering hole which we had not been to in over a year. The bartender immediately acknowledged our absence while unknowingly alluded to our wild past and abruptly changed lifestyles all at once. We sat and had two beers each(more than we have had in one sitting in over a year)and reminisced over the past year. We laughed at how difficult it has been and how great at the same time. We discussed how crazy we are for one another and how lucky we feel to be together. We played a few of our favorite songs on the jukebox and then left not knowing when we might get back. Then we went out for a nice dinner at a small, romantic Italian restaraunt. Periodically, we both would stop and just smile at the other. We talked about the next 50 years and how lucky we are to have found each other.
At 9:30pm, we went home, tired, missing our son, and In LOVE as always!!!
Happy Anniversary Susie Blue...
Monday, March 27, 2006
Saturday, March 25, 2006
One Day Before The One Year Anniversary !!!
In some ways I feel like it has been 25 years since Susie and I were married.
Consider this, Susie and I started dating sometime October 2004. I moved out of my old house and into an apartment on Halloween Eve 2004. Susie, just prior to that, moved in with her brother. From October to January, about 3 months, we ran around from the beach, to Hurricane football games, to meeting each other's parents, to celebrating my birthday, to seeing Sunny (my sister) sing, to dancing at Independent Bar, to celebrating Christmas and New Years Eve together, and other things which would qualify as "just having fun".
Meanwhile, Susie's divorce was finalized and we began discussing getting married "someday" and maybe even having kids. Well, "someday" came sooner than we thought. On Jan. 27th 2005, we found out Susie was pregnant at around 5:30 pm to a resounding, impromptu, "Oh fuck!!!" from myself, followed by a great deal of tears and laughter. In that same moment, I decided to propose to Susie as I had planned to do within the next year.
From that point, Susie moved in with me almost immediately. The next day we went to the Zora Neale Hurston Festival and saw Isaac Hayes in concert. The "just having fun" all but stopped as we began planning our wedding, started well-pregnancy visits, and told everyone the news.
On February 14th, 2005, Valentines Day, we had seen our baby via ultrasound the first time. I proposed again to Susie that very same day with a ring by a lake on the lawns of Leu Gardens. I got on both knees, asked her to marry me, opened the box with the ring in it, and handed her the entire box. She laughed and I stayed on my knees not knowing when to get up. Finally, I think she told me to stand up. We spent that Valentines Day at Leu Gardens listening to jazz and walking around.
Susie was sick everyday for the next 2 or 3 months. It was awful!!!
On March 26th, after a month of planning and arguing with family about whether we would have a wedding or go to the courthouse and whether there should be extended family or just immediates, and whether my sister's pugs would be at the wedding, Susie and I were married in Miami. After a few days in the Keyes, it was back to work.
In April, Susie had her birthday which we celebrated at the beach with a rented convertible filled with flowers and balloons and a cake in the sand. We began plans to begin a tutoring business including submitting proposals and getting approvals to procede from the state licensing bureau and completed a website (www.geocities.com/raskincounselor/homeworkclub) for the same business which has yet to come to fruition I might add but is getting closer as we have gotten approval to obtain the needed occupational license.
In June, I developed what may have been a kidney stone and vertigo due to what was probably an inner-ear infection. Who knows, as it is gone now, but for one week I thought I may die and never even meet my baby. Susie had diagnosed me with Type II diabetes and the doctors thought it may have been a sympathy pregancy until finally doing an MRI revealing an "irritated kidney" which seemed to have passed a stone. All I know is, it hurt, whatever it was!!!
Susie and I also attended a "How to have a baby" class required by our doctor, which we promptly proceeded to skip the second day of. We also found out we were having a boy. Somewhere in here, I think it was June, Susie studied for and took the state licensure exam for mental health counselors and became a Licensed Mental Health Counselor.
Over the next 4 months, it was baby shower after baby shower ending with somewhere around 5 showers total including a big shower at Raskin Dance Studios filled with people Susie and I had never met or heard of giving us gifts, some very expensive. We also moved into a new apartment with all the stress of moving on top of Susie being quite pregnant and unable to do much.
Quickly, I prepared the apartment for our baby. Put the crib together and all the other crap you don't even know exists until you are having a baby. This while, unpacking boxes and moving furniture in our new apartment.
On September 15, 2005, Jack was born and the rest is entered in this blog already as the world became centered around the boy and the, alleged, "conspiracy" to make Susie and I crazy. One birth, colic, 4 teeth, and a cyst in the head later and here we are.
One year of marriage!!! If you can go through all of that, and all of the fear and sadness, and tears and laughter that comes with it, and somehow still feel as grounded and in love as Susie and I do together, than you know you've got a great marriage. I'm very lucky and, having never had an anniversary before, I'm feel like it's Christmas Eve the night before our big day.
Consider this, Susie and I started dating sometime October 2004. I moved out of my old house and into an apartment on Halloween Eve 2004. Susie, just prior to that, moved in with her brother. From October to January, about 3 months, we ran around from the beach, to Hurricane football games, to meeting each other's parents, to celebrating my birthday, to seeing Sunny (my sister) sing, to dancing at Independent Bar, to celebrating Christmas and New Years Eve together, and other things which would qualify as "just having fun".
Meanwhile, Susie's divorce was finalized and we began discussing getting married "someday" and maybe even having kids. Well, "someday" came sooner than we thought. On Jan. 27th 2005, we found out Susie was pregnant at around 5:30 pm to a resounding, impromptu, "Oh fuck!!!" from myself, followed by a great deal of tears and laughter. In that same moment, I decided to propose to Susie as I had planned to do within the next year.
From that point, Susie moved in with me almost immediately. The next day we went to the Zora Neale Hurston Festival and saw Isaac Hayes in concert. The "just having fun" all but stopped as we began planning our wedding, started well-pregnancy visits, and told everyone the news.
On February 14th, 2005, Valentines Day, we had seen our baby via ultrasound the first time. I proposed again to Susie that very same day with a ring by a lake on the lawns of Leu Gardens. I got on both knees, asked her to marry me, opened the box with the ring in it, and handed her the entire box. She laughed and I stayed on my knees not knowing when to get up. Finally, I think she told me to stand up. We spent that Valentines Day at Leu Gardens listening to jazz and walking around.
Susie was sick everyday for the next 2 or 3 months. It was awful!!!
On March 26th, after a month of planning and arguing with family about whether we would have a wedding or go to the courthouse and whether there should be extended family or just immediates, and whether my sister's pugs would be at the wedding, Susie and I were married in Miami. After a few days in the Keyes, it was back to work.
In April, Susie had her birthday which we celebrated at the beach with a rented convertible filled with flowers and balloons and a cake in the sand. We began plans to begin a tutoring business including submitting proposals and getting approvals to procede from the state licensing bureau and completed a website (www.geocities.com/raskincounselor/homeworkclub) for the same business which has yet to come to fruition I might add but is getting closer as we have gotten approval to obtain the needed occupational license.
In June, I developed what may have been a kidney stone and vertigo due to what was probably an inner-ear infection. Who knows, as it is gone now, but for one week I thought I may die and never even meet my baby. Susie had diagnosed me with Type II diabetes and the doctors thought it may have been a sympathy pregancy until finally doing an MRI revealing an "irritated kidney" which seemed to have passed a stone. All I know is, it hurt, whatever it was!!!
Susie and I also attended a "How to have a baby" class required by our doctor, which we promptly proceeded to skip the second day of. We also found out we were having a boy. Somewhere in here, I think it was June, Susie studied for and took the state licensure exam for mental health counselors and became a Licensed Mental Health Counselor.
Over the next 4 months, it was baby shower after baby shower ending with somewhere around 5 showers total including a big shower at Raskin Dance Studios filled with people Susie and I had never met or heard of giving us gifts, some very expensive. We also moved into a new apartment with all the stress of moving on top of Susie being quite pregnant and unable to do much.
Quickly, I prepared the apartment for our baby. Put the crib together and all the other crap you don't even know exists until you are having a baby. This while, unpacking boxes and moving furniture in our new apartment.
On September 15, 2005, Jack was born and the rest is entered in this blog already as the world became centered around the boy and the, alleged, "conspiracy" to make Susie and I crazy. One birth, colic, 4 teeth, and a cyst in the head later and here we are.
One year of marriage!!! If you can go through all of that, and all of the fear and sadness, and tears and laughter that comes with it, and somehow still feel as grounded and in love as Susie and I do together, than you know you've got a great marriage. I'm very lucky and, having never had an anniversary before, I'm feel like it's Christmas Eve the night before our big day.
Wednesday, March 22, 2006
Wenzdai
At the school I work within, there is a child by the name of Wenzdai. She is in one of the lower grades and since I serve the higher grades and their families I don't see her much. Last year we crossed paths a few times in the lunchroom. At the time she was in 1st grade. She started half way through the school year.
On her first day last year, I walked up and introduced myself. She had a crazy looking 80's haircut looking like she was out of Kajagoogoo or something of the sort. After my introduction to her, she smiled wide and a very noticeable little, black, pointed tooth greeted me. She showed me a note that her mother wrote to her buried underneath her sandwich. It said something along the lines of, "I love you and I hope you have a great day". She was very proud of her note. I asked her what she had brought for lunch and she itemized her lunchbox contents one at a time. A pickle, a bag of mashed up salt and vinegar potato chips, and a sandwich. I asked her what kind of sandwich she had and she opened the bread. The two slices peeled away yielding a white, sticky substance which she indicated was, of course, marshmallow. Hence, the black tooth.
Anyway, every few days last year I would stop by at lunch and say hello to her and she would show me her strange lunches and a note from her parents. Dressed in knee high leather boots no matter the rest of the outfit, she would skip to and from wherever I would see her.
A year later I rarely see her at all. The only time we cross paths is first thing in the morning at around 8:30 while all of the kids are filing into school. I stand outside of my office and greet them all with a "good morning" and a big smile. Most smile back and mutter something along the lines of "good morning to you" but this varies depending upon their age and social development. Sometimes it sounds more like, "What, oh, hi" or "Mmmhmmmrrr" or "He hit me!". Anyway, everyday Wenzdai sneeks up to me while I'm greeting all the kids, sometimes without me even noticing, and she mugs me with a hug. What a great kid and a great way to start my day. From there usually my day is filled with dealing with problems which you would hope kids didn't ever have to deal with much less when in 3rd, 4th and 5th grades. These problems range from bullying, to not enough money at home to eat/dress appropriately, to issues of abuse and neglect.
Thanks Wenzdai.
On her first day last year, I walked up and introduced myself. She had a crazy looking 80's haircut looking like she was out of Kajagoogoo or something of the sort. After my introduction to her, she smiled wide and a very noticeable little, black, pointed tooth greeted me. She showed me a note that her mother wrote to her buried underneath her sandwich. It said something along the lines of, "I love you and I hope you have a great day". She was very proud of her note. I asked her what she had brought for lunch and she itemized her lunchbox contents one at a time. A pickle, a bag of mashed up salt and vinegar potato chips, and a sandwich. I asked her what kind of sandwich she had and she opened the bread. The two slices peeled away yielding a white, sticky substance which she indicated was, of course, marshmallow. Hence, the black tooth.
Anyway, every few days last year I would stop by at lunch and say hello to her and she would show me her strange lunches and a note from her parents. Dressed in knee high leather boots no matter the rest of the outfit, she would skip to and from wherever I would see her.
A year later I rarely see her at all. The only time we cross paths is first thing in the morning at around 8:30 while all of the kids are filing into school. I stand outside of my office and greet them all with a "good morning" and a big smile. Most smile back and mutter something along the lines of "good morning to you" but this varies depending upon their age and social development. Sometimes it sounds more like, "What, oh, hi" or "Mmmhmmmrrr" or "He hit me!". Anyway, everyday Wenzdai sneeks up to me while I'm greeting all the kids, sometimes without me even noticing, and she mugs me with a hug. What a great kid and a great way to start my day. From there usually my day is filled with dealing with problems which you would hope kids didn't ever have to deal with much less when in 3rd, 4th and 5th grades. These problems range from bullying, to not enough money at home to eat/dress appropriately, to issues of abuse and neglect.
Thanks Wenzdai.
Monday, March 20, 2006
Dock Walks
Susie, Jack and I had a great weekend over the past couple of days. After Jack and I watched the sunrise and briskly walked a few miles to get a wedding present for the second week in a row, we spent Saturday at Jack's third wedding experience and second time in his tuxedo (pictures to follow soon). The wedding was for an uncle I don't know very well who likes to ride Harleys. Jack was passed around like the lead singer of a rock n roll band after stage diving into an ocean of fans for about an hour. He had a great time and seems to relish the spotlight as much as his Aunt Sunny...oh no!!! Another artist? I don't know if I can handle it. For some reason, Jack remained quiet during both of the wedding he attended recently until the actual ceremony begins. Then, like clockwork, he decides to practice his phonetics while chewing on his fist which creates some very loud noises I might add.
Anyway, Jack's Grammy Val and Grampy Rich (my parents) continue to melt every time they see him about 2 to 3 times a week. Jack clearly loves them both as he smiles endlessly (not really but alot) until they give him back to his keepers. They have developed all of their own little funny ways of talking to him which he recognizes and which are distinctly different than Susie and I's repetoire which is undoubtedly great for him developmentally speaking.
After the biker wedding, we headed home and Jack went to bed after our ritual Dock Walk (where we take Jack to the dock on our lake for a calming down before dinner and bed). It helps me too. I have gotten away from meditating as I had done for a couple of years relatively regularly and the Dock Walk seems to be a gradual return to this.
Jack went to bed at around 5:30 and awoke at 9:30 and then slept the rest of the night, waking when the sun came up. Susie got up with him and I followed about an hour later, savoring my chance to sleep in.
After preparing the boy for a day of art and Winter Park hobnobbing (spelling?), we were off. We took Jack to the art festival all decked out in his I Love N.Y. onesie and red shorts and hat. In the carrier/papoose thing, he spent about an hour with us looking at art and listening to music while people smiled at him and he smiled back. Then, at some point, Jack ate his picnic lunch, a vintage bottle of the white stuff circa March 2006 (formula) in the park while lying in his mothers lap. Then he moved to the stroller for another hour or so and fell asleep awaking about 45 minutes later with a smile on his face as Susie and I finished our cherished glasses of red wine...savoring every last drop. Then, while changing him, he filled the stroller with his own urine, soaking his N.Y. onesie and sucking on it simultaneously...he's a gross baby! After a new set of clothes and another 30 minutes of walking around, we headed home.
After some sweet potatoes, another dock walk, and touching base with family members by phone, Jack was asleep again by 5:30. He slept on my lap for 30 minutes and then I put him in the crib. This is where he remained until almost 7am this morning!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The bags under my eyes have begun to lift. Even though I locked my keys in my car for the first time in over ten years on Friday and Susie lost her keys this morning for I believe the first time ever, I think we are coming out of the fog.
Just thought I would share what amounts to the most calm and pleasure filled weekend with Senor Smooth that we've had to date.
I love my family.
Anyway, Jack's Grammy Val and Grampy Rich (my parents) continue to melt every time they see him about 2 to 3 times a week. Jack clearly loves them both as he smiles endlessly (not really but alot) until they give him back to his keepers. They have developed all of their own little funny ways of talking to him which he recognizes and which are distinctly different than Susie and I's repetoire which is undoubtedly great for him developmentally speaking.
After the biker wedding, we headed home and Jack went to bed after our ritual Dock Walk (where we take Jack to the dock on our lake for a calming down before dinner and bed). It helps me too. I have gotten away from meditating as I had done for a couple of years relatively regularly and the Dock Walk seems to be a gradual return to this.
Jack went to bed at around 5:30 and awoke at 9:30 and then slept the rest of the night, waking when the sun came up. Susie got up with him and I followed about an hour later, savoring my chance to sleep in.
After preparing the boy for a day of art and Winter Park hobnobbing (spelling?), we were off. We took Jack to the art festival all decked out in his I Love N.Y. onesie and red shorts and hat. In the carrier/papoose thing, he spent about an hour with us looking at art and listening to music while people smiled at him and he smiled back. Then, at some point, Jack ate his picnic lunch, a vintage bottle of the white stuff circa March 2006 (formula) in the park while lying in his mothers lap. Then he moved to the stroller for another hour or so and fell asleep awaking about 45 minutes later with a smile on his face as Susie and I finished our cherished glasses of red wine...savoring every last drop. Then, while changing him, he filled the stroller with his own urine, soaking his N.Y. onesie and sucking on it simultaneously...he's a gross baby! After a new set of clothes and another 30 minutes of walking around, we headed home.
After some sweet potatoes, another dock walk, and touching base with family members by phone, Jack was asleep again by 5:30. He slept on my lap for 30 minutes and then I put him in the crib. This is where he remained until almost 7am this morning!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The bags under my eyes have begun to lift. Even though I locked my keys in my car for the first time in over ten years on Friday and Susie lost her keys this morning for I believe the first time ever, I think we are coming out of the fog.
Just thought I would share what amounts to the most calm and pleasure filled weekend with Senor Smooth that we've had to date.
I love my family.
Wednesday, March 15, 2006
Happy 6 Month Birthday Jack!!!
Jack's screaming in the other room with his mother. Apparently he hates birthdays as this is his worst day in about a week. He has actually been eating a ton and has slept through the night on a handful of occasions but today it's back to teething hell, poor eating, and extra crying/fussiness.
On Sunday, Jack went to his first wedding, not counting Susie and I's wedding. He was all decked out in a tux. The picture is below for all to see. The cuteness can't be captured in words. And, yes, he did our hair.
This coming weekend we have yet another wedding to attend and plan to go to an art festival. The kid needs more culture in his life and Susie and I have been culturally starved for over a year now.
So today, after work, I met Susie and Jack at the mall where they have made their second home. Jack fell asleep and we walked around looking for things we need. While buying a bedskirt for our bed, some woman says to me while in line to pay, "that's a beautiful color". I said, "Mmm hmmm". Susie laughed at my lack of small talk desire. This is not the first time I have had this pointed out to me nor am I oblivious to my lack of initiative in this area. I simply don't want to talk about the color of my sheets. I think some people would enjoy this sort of conversation but I simply don't. Does this make me anti-social? I don't think so. I didn't ignore the woman or seem unpleasant but I simply didn't open the door to the cornucopia filled with sheet talk.
The funny thing is, when in India, Italy, France or other places that I have travelled, I like small talk. I don't know what it is specifically that contributes to this nuance in my own preferences. For some reason, I feel like conversations with people in far away places bring me closer together with them while conversations with people in the mall simply bring me closer to knowing things I don't care to know. The other part of that is, I think the small talk in many of the places I have travelled to is different than here. For example, it often begins with where are you from? What bring you here? It also seems to link to passions or livelihoods. Like, stories about how this fruit stand is the greatest one, or, how generations of one's family are linked to any given place. I guess that's it. The small talk is in the form of a story and often leads to getting to know someone. It isn't about the color of a sheet or how cute your baby is.
This is probably all b.s. as I think I'm just longing for some travel...I'm due!
On Sunday, Jack went to his first wedding, not counting Susie and I's wedding. He was all decked out in a tux. The picture is below for all to see. The cuteness can't be captured in words. And, yes, he did our hair.
This coming weekend we have yet another wedding to attend and plan to go to an art festival. The kid needs more culture in his life and Susie and I have been culturally starved for over a year now.
So today, after work, I met Susie and Jack at the mall where they have made their second home. Jack fell asleep and we walked around looking for things we need. While buying a bedskirt for our bed, some woman says to me while in line to pay, "that's a beautiful color". I said, "Mmm hmmm". Susie laughed at my lack of small talk desire. This is not the first time I have had this pointed out to me nor am I oblivious to my lack of initiative in this area. I simply don't want to talk about the color of my sheets. I think some people would enjoy this sort of conversation but I simply don't. Does this make me anti-social? I don't think so. I didn't ignore the woman or seem unpleasant but I simply didn't open the door to the cornucopia filled with sheet talk.
The funny thing is, when in India, Italy, France or other places that I have travelled, I like small talk. I don't know what it is specifically that contributes to this nuance in my own preferences. For some reason, I feel like conversations with people in far away places bring me closer together with them while conversations with people in the mall simply bring me closer to knowing things I don't care to know. The other part of that is, I think the small talk in many of the places I have travelled to is different than here. For example, it often begins with where are you from? What bring you here? It also seems to link to passions or livelihoods. Like, stories about how this fruit stand is the greatest one, or, how generations of one's family are linked to any given place. I guess that's it. The small talk is in the form of a story and often leads to getting to know someone. It isn't about the color of a sheet or how cute your baby is.
This is probably all b.s. as I think I'm just longing for some travel...I'm due!
Sunday, March 12, 2006
Tuesday, March 7, 2006
Almost In The Present With Little Big Head
Finally, after 2 weeks of writing frantically, I am caught up to almost the present. It has been 2 weeks since the Dr. Trumble appointment. Jack is still teething, we hope. At this point, after going to bed at around 5:30pm, Jack wakes every hour, sometimes every 20 minutes, fussing and whining while trying to get something in his mouth. At around 9pm he wakes up crying, seemingly hungry and typically I feed him. After feeding him, he typically goes to bed and wakes 1 or 2 times before getting up to eat again anywhere between 11:30pm and 1am when Susie usually feeds him. Then he usually makes it another 3 to 4 hours before waking again somewhere between 3am and 5am to eat, yet again. Then he demands we put him in the swing in our room where he sleeps until the sun comes up, when Susie gets up with him and I go to work, usually.
During the day, at least for the past week, Jack has been pleasant based on Susie's reports and my weekend experiences with him. He loves the outdoors. Over the weekend, I walked him on Saturday and Sunday morning with all the Joggers. I hate how happy Joggers are in the morning. However, it was nice when a Jogger ran by Jack and I on Saturday and looked at us, smiling, and she said, "good morning daddy". I couldn't help but smile. I could hear a laugh trail behind me as she was amused by her own delightfulness and maybe how calm the two of us appeared. Then, we returned to The Mother after hour one hour walk, who had slept in a bit (if sleeping in counts when you get up at 8:30 am) and had cleaned the house all by 10 am. Jack downed his upward limit of about 6 or 7 ozs. of formula and then it was off to Lake Eola, downtown. It was a beautiful day. We walked about a mile and then stopped to eat lunch. Jack had fun watching a woman under the influence of some very mood enhancing drugs ordering a burrito, as she was quite animated. I thought, perhaps her calling is entertaining babies as they enjoy fast movements and lots of talking. She left abruptly before I could offer her a babysitting job.
We walked some more around downtown, passing through a group of juvenile delinquents who were painting manhole covers. Jack fell asleep as Susie and I discussed the way in which babies seem to act as a forcefield to stranger comments when not related to babies themself. We decided to walk another mile or two. Eventually, we walked around Lake Eola again finding our way to the public library. We read some books to Jack, fed him another 6 or 7 ozs. and made him laugh alot. We took Jack to the top floor where we looked out the windows. This is the periodicals floor, where very serious people peruse through very old and serious articles, about very serious issues. Jack was not feeling very serious and decided to break the silence by talking very loud. Susie and I, embarrased and proud at the same time of our baby's sense of comedic timing, hid in the some very old Life magazines trying to find the oldest one (1930 something). We wandered around some more and then we went back downstairs, finally leaving in the direction of chocolate ice cream for The Mother.
After getting The Mother some very important cocoa fuel necessary to continue our marathon walk, we found a man playing middle eastern guitar to some recorded drum beats by the lake. We spread a blanket out on the ground and Jack had his first outdoor concert experience. He showed off his new mastery of rolling from stomach to back and attempted to start a Yoga class but there were no takers as they thought he was just a baby on a blanket. He started to get upset.
We walked some more. Somewhere along the way we made a flock of seagulls fly (not the band but real live birds) and let the water from a fountain splash us in the face. We started walking back to the car as it was around 3pm now. Jack fell asleep in the stroller and we walked another mile or so. Finally, it was time to head home at around 4 pm. The first perfect day with Jack, in almost 6 months of life, was almost over.
We headed back home, where we changed Jack, and then headed down to the dock overlooking our lovely lake. This has become a ritual over the past 2 weeks at this time of day. Jack looks for his fish friends, a bass, a brim, and an unidentified fishy looking creature, a seagull named appropriately, Jonathan Livingston Seagull, and a squirrel named appropriately, Squirrel Friend, all while Susie and I talk about how many life changes we have had over the past 2 years, how lucky we are, and wonder what we did to deserve such a difficult time over the past year, all at the same time. Then we headed back to our patio where Jack likes to take his socks off and press them on the sun-warmed concrete wall. Finally, it was time for a bath. Ending with some screaming, a bottle, and sleep, all by 6 pm. The Mother put him to bed while I made the dinner.
You would think that Jack would be so tired that he would just sleep for 8 hours. Wrong! Every hour or less he woke until eating again at around 8:30pm. Continuing what we believe to be teething, Jack fussed his way through the night. Every once in awhile we both get quite scared that it isn't teething and it is all due to pressure building in his head from the cyst. This is sometimes more worrisome, like when we notice that the right side of his forehead has veins showing beneath the surface of his skin and the left side does not, or, when we realized that the right side of his forehead pertrudes a bit further than the left side only noticeable to the touch, or, when each morning we check for teeth and no new ones have arrived to confirm our theory of teething.
A week ago, after 2 days of constipation, Jack woke up in more pain than usual from the teething. While on the changing table, he stretched, and on his left side, his abdomen litteraly poked out and moved around like in Alien 1 when the man gave explosive birth to an alien. In hindsight, it seems funny (not that funny, as we have attributed this to gas/constipation only after Jack had what one can only call a "Man Poop" the next morning. But, at the time, I thought...oh my god, now he's got a cyst in his abdomen.
Each day for the past 2 weeks, it gets a little more normalized to know our baby has a cyst in his head. I know we have to keep from letting it run our lives and we are certainly doing that. However, we also have to keep it in our awareness whenever anything unusual happens, and that is pretty often with Little Big Head.
Now that I'm in the present. I promise to lighten up a bit. I'm not sure that anyone is actually reading at this point. I must say, it was therapeutic just to write all of that stuff down. I feel like I exorcised a tremendous amount of negative energy while, hopefully, helping some people who struggled to read my narcistic rantings, to empathize and understand why myself and my wife have checked out and become so obsessed with our baby boy, whom, I might add, I love!
During the day, at least for the past week, Jack has been pleasant based on Susie's reports and my weekend experiences with him. He loves the outdoors. Over the weekend, I walked him on Saturday and Sunday morning with all the Joggers. I hate how happy Joggers are in the morning. However, it was nice when a Jogger ran by Jack and I on Saturday and looked at us, smiling, and she said, "good morning daddy". I couldn't help but smile. I could hear a laugh trail behind me as she was amused by her own delightfulness and maybe how calm the two of us appeared. Then, we returned to The Mother after hour one hour walk, who had slept in a bit (if sleeping in counts when you get up at 8:30 am) and had cleaned the house all by 10 am. Jack downed his upward limit of about 6 or 7 ozs. of formula and then it was off to Lake Eola, downtown. It was a beautiful day. We walked about a mile and then stopped to eat lunch. Jack had fun watching a woman under the influence of some very mood enhancing drugs ordering a burrito, as she was quite animated. I thought, perhaps her calling is entertaining babies as they enjoy fast movements and lots of talking. She left abruptly before I could offer her a babysitting job.
We walked some more around downtown, passing through a group of juvenile delinquents who were painting manhole covers. Jack fell asleep as Susie and I discussed the way in which babies seem to act as a forcefield to stranger comments when not related to babies themself. We decided to walk another mile or two. Eventually, we walked around Lake Eola again finding our way to the public library. We read some books to Jack, fed him another 6 or 7 ozs. and made him laugh alot. We took Jack to the top floor where we looked out the windows. This is the periodicals floor, where very serious people peruse through very old and serious articles, about very serious issues. Jack was not feeling very serious and decided to break the silence by talking very loud. Susie and I, embarrased and proud at the same time of our baby's sense of comedic timing, hid in the some very old Life magazines trying to find the oldest one (1930 something). We wandered around some more and then we went back downstairs, finally leaving in the direction of chocolate ice cream for The Mother.
After getting The Mother some very important cocoa fuel necessary to continue our marathon walk, we found a man playing middle eastern guitar to some recorded drum beats by the lake. We spread a blanket out on the ground and Jack had his first outdoor concert experience. He showed off his new mastery of rolling from stomach to back and attempted to start a Yoga class but there were no takers as they thought he was just a baby on a blanket. He started to get upset.
We walked some more. Somewhere along the way we made a flock of seagulls fly (not the band but real live birds) and let the water from a fountain splash us in the face. We started walking back to the car as it was around 3pm now. Jack fell asleep in the stroller and we walked another mile or so. Finally, it was time to head home at around 4 pm. The first perfect day with Jack, in almost 6 months of life, was almost over.
We headed back home, where we changed Jack, and then headed down to the dock overlooking our lovely lake. This has become a ritual over the past 2 weeks at this time of day. Jack looks for his fish friends, a bass, a brim, and an unidentified fishy looking creature, a seagull named appropriately, Jonathan Livingston Seagull, and a squirrel named appropriately, Squirrel Friend, all while Susie and I talk about how many life changes we have had over the past 2 years, how lucky we are, and wonder what we did to deserve such a difficult time over the past year, all at the same time. Then we headed back to our patio where Jack likes to take his socks off and press them on the sun-warmed concrete wall. Finally, it was time for a bath. Ending with some screaming, a bottle, and sleep, all by 6 pm. The Mother put him to bed while I made the dinner.
You would think that Jack would be so tired that he would just sleep for 8 hours. Wrong! Every hour or less he woke until eating again at around 8:30pm. Continuing what we believe to be teething, Jack fussed his way through the night. Every once in awhile we both get quite scared that it isn't teething and it is all due to pressure building in his head from the cyst. This is sometimes more worrisome, like when we notice that the right side of his forehead has veins showing beneath the surface of his skin and the left side does not, or, when we realized that the right side of his forehead pertrudes a bit further than the left side only noticeable to the touch, or, when each morning we check for teeth and no new ones have arrived to confirm our theory of teething.
A week ago, after 2 days of constipation, Jack woke up in more pain than usual from the teething. While on the changing table, he stretched, and on his left side, his abdomen litteraly poked out and moved around like in Alien 1 when the man gave explosive birth to an alien. In hindsight, it seems funny (not that funny, as we have attributed this to gas/constipation only after Jack had what one can only call a "Man Poop" the next morning. But, at the time, I thought...oh my god, now he's got a cyst in his abdomen.
Each day for the past 2 weeks, it gets a little more normalized to know our baby has a cyst in his head. I know we have to keep from letting it run our lives and we are certainly doing that. However, we also have to keep it in our awareness whenever anything unusual happens, and that is pretty often with Little Big Head.
Now that I'm in the present. I promise to lighten up a bit. I'm not sure that anyone is actually reading at this point. I must say, it was therapeutic just to write all of that stuff down. I feel like I exorcised a tremendous amount of negative energy while, hopefully, helping some people who struggled to read my narcistic rantings, to empathize and understand why myself and my wife have checked out and become so obsessed with our baby boy, whom, I might add, I love!
Monday, March 6, 2006
Jack's Dx (A Brief and General Description)
For those that want to know, here is what our son has been dx with...this does not mean spiders live in his brain...that would be Arachnid and much worse in my opinion!!!
Arachnoid Cysts are cerebrospinal fluid-filled sacs that may develop between the surface of the brain and the cranial base or on the arachnoid
membrane (one of the 3 membranes, dura mater, arachnoid, and pia mater, that cover the brain and the spinal cord). Arachnoid cysts appear on the arachnoid membrane, and they may also expand into the space between the pia mater and arachnoid membranes (subarachnoid space). While Arachnoid Cysts in general are not rare, they are extremely rare in some locations. Arachnoid Cysts do not usually appear within the two hemispheres of the brain (cerebrum) or within the cavities (ventricles) of the brain. Most cases begin during infancy, however onset may be delayed until adolescence. Symptoms of an Arachnoid Cyst are related to the cyst size and location. Small cysts are usually asymptomatic and are discovered only incidentally. Large cysts may cause cranial deformation or macrocephaly (enlargement of the head), producing such symptoms as headaches, seizures, hydrocephalus (excessive accumulation of cerebrospinal fluid), increased intracranial pressure, developmental delay, and behavioural changes. Other symptoms may include hemiparesis (weakness or paralysis on one side of the body) and ataxia (lack of muscle control).
Enter Dr. Trumble, Our New Best Friend
Dr. Trumble is a short man who looks tall. Probably because you are most likely to see him while sitting in a chair looking up at him while he reads results to you. The first time I saw him, however, was on the internet. I decided to research the man that was now in charge of Jack's monster. I searched under his name on the internet and found a website for his practice. I read about his impressive academic background and his resume. The thing that made me feel like I was going to like him though was the way he smiled for the picture on the internet. I don't know if it was my women's intuition (I have a giant corpus collosum) but I felt like I was looking at just the kind of doctor I had been hoping for all along. The kind that would talk to you as if you were a colleague with the same intellectual abilities as themself even if this wasn't the case. The kind that was sensitive to what you are going through, as if it were there own blood, and they hadn't been through this 1,000 times before and often seen much worse. The kind that didn't seem in a hurry despite an office full of patients, a Lotus in the parking lot, and brain surgery scheduled for 3 hours from the time of your appointment. The kind that sends you an e-mail with a copy of the note he is sending your pediatrician just so you are aware of what is going on behind the scenes. Dr. Trumble looked like he might be that guy and it turned out that he was that guy afterall.
Our appointment rolled around after yet another weekend of waiting, researching, and playing with Jack. By Monday, Susie and I were getting used to this. Load Jack up, head to the medical region of Orlando, pretend like we aren't worried, and prepare for what we can't prepare for and the unknown. Trumble's office is located right next to the Children's hospital where Jack was born. As we drove up we spotted a very rare car, a Lotus, that stood out in the parking lot. By far the nicest and most expensive car I have seen in, well, probably years. On the pavement in front of the car, Trumble's name was painted. Today we would purchase a few tanks of gas for our new friend and his sporty fun machine, I thought.
Jack was teething we thought and was not sleeping or eating well for the past few nights. We took him upstairs to the office waiting room, Susie checked us in, and I struggled to keep Jack entertained. The office was decorated with fish stickers all over the walls from Finding Nemo, the same movie we watched in the lobby while awaiting Jack's CT scan when this all began about 2 weeks ago. The stickers did not succeed in making the lobby any less sterile or intimidating for me. At least 5 kids waited to see the doc with various visible signs of head injury/problems. One sitting closest to us I suspect was about 10 with a very large head, probably the result of hydrocephalus or "water on the brain". Another, across the room, about 2 years old, wore a helmut. I wasn't sure why but I assumed it was the result of a head injury or possibly to protect a recent, unhealed surgery. Another child of about 8 sat with a bandage on her head looking dazed. Yet another child, a baby, sat covered in a carrier. Her mother sat talking with, who seemed likely to be, her mother. They talked about the possibility of needing to move closer to the children's hospital indicating that the problems the baby in the carrier was dealing with may be long term. Further, they commented frequently on Jack who I was attempting to placate unsuccessfully by flying him through the air to look at the fish on the walls. Eventually, both Susie and I took turns running him up and down the hallway and in and out of the lobby. Everyone eventually stopped to look at the youngest, visible patient in the lobby and comment on how cute he was. I avoided eye contact as not to engage in any conversations about his condition, know full well I could not handle hearing about their child at this point.
Finally, we were called back into the office after about 45 minutes. The examining room was just like any doctor's office over looking a lake. It was decorated for children, especially those who like Batman. A nurse, who Susie would later tell me was probably Trumble's wife based on her nametag, greeted us by asking if Jack had been there before. Not taking no for an answer, she asked if he had been in surgery before, possibly when first born? We again said no. She then said that he seemed soooo familiar to her. Somehow I was bothered by this, thinking that this meant he looked like someone who has problems with his brain...for that is who she sees all the time, I thought. She looked at him without a smile, examining him briefly with her eyes. She asked us a few questions about the shape of his head, saying his head was quite flat on the back which, of course, we were aware of but not concerned about. She then stated, that Trumble would read to us his opinions on the findings of the MRI but she added that he would also likely recommend treatment options for his head shape! Suddenly, there was more. I was refusing to even discuss his head shape for it seemed trivial at this time. She went on to mention that a "band" may be necessary adding that his head shape may even be correlated with other problems!!! She then ended with a look of worry, asking, can he move his head this way. Jack eventually turned to look at her, as if to say, "what's your problem crazy lady". She sighed in relief, indicating that this conversation wasn't going to get more convuluted and worrisome than it already had. She then told us that Trumble would be in to see us shortly and left. I was happy to see her go and Susie and I talked about her poorly for several minutes until Jack started laughing. We played with him until Trumble came in.
Trumble made his entrance, laptop on a portable desk in tow. He smiled and looked at each of us introducing himself in a very calm, pleasant, and serious manner. He then discussed the plan to review the results and asked if we would both sit with Jack. My adrenaling was flying but I was ready to sit down. He quickly indicated that he felt the news was good. He turned the laptop to face us and began talking to us about the pictures of Jack's brain/skull. An empty area above the right hemisphere, Trumble explained, indicated what amounts to a likely Arachnoid Cyst that was probably but not definitely there since birth. He then discussed the nature of these cysts as benign and that their main threat when outside of the brain is in their unpredictable nature in terms of putting pressure on the brain causing mass effects (or midline shift). He indicated that the pix indicate that this cyst seems to be putting some pressure on the brain but does not appear to have caused any mass effects or brain damage. We talked about our family hx and Jack's lack of obvious symptoms and normal development to date. Trumble indicated that before the meeting with us, he felt like surgery was probably the best option. At this point, he indicated that he felt we should wait and monitor the cyst for effects due to Jack's presentation as "normal" and without symptoms.
Trumble then changed the subject to Jack's head shape. He stated that Jack fits the dx for benign positional pagiocephaly, basically translating to misshapen head. He discussed how this happens, stating that it is due to babies sleeping on their backs. I had read about it already and was somewhat familiar. I understood it to be cosmetic only. Trumble indicated that it would be our choice to put him in a band. He then retrieved a band which was actually the same as the helmut I had seen earlier on the child in the lobby. He said, as long as Jack doesn't wear his hair like me (completely bald) then it probably wouldn't even be noticeable once his hair grew in. However, he added that he recommended we start it soon or else it would be too late as the skull would become hardened and less maleable. We asked to think about it and wait, indicating we were doing everything possible already to reduce the time he was laying on his back. He indicated that this was a good strategy and gave us a script for the helmut if we chose to go that route within the month.
Quickly, I changed my attention back to the cyst. Trumble indicated that if he needed to do surgery he thought the procedure would be relatively uncomplicated. He then indicated that the cyst WAS in a very unusual location and presented some possible problems with regard to fenestration (draining) which may warrant the placement of a shunt. He added though that either way he felt it would go well and we should wait, get an MRI again in 3 months, and reexamine the results at that point. He seemed confident and, therefore, I felt more confident. I then asked how we would no if the cyst was creating problems, like the possible brain damage or midline shift he had referred to. He then indicated that at Jack's age this would not be easy suggesting that it would most likely result in changes in eating and sleeping habits as well as moodiness and eventually it would effect his development and motor skills. I told him about the teething symptoms sounding very similar to the first few signs he mentioned and he agreed that there was no easy way to know. I asked, if there were signs of effects on the brain what would the consequences be, in other words, would brain damage be irreversible? He indicated that as long as we continue to monitor him, no, any damage would not have long term effects and would correct itself following surgery.
The session ended. We discussed our possible plan to change pediatricians and became aware that Trumble had had breakfast with Kalter the day before. He did however seem to fully understand. He acknowledged the predicament we were in wanting quality of treatment along with social mores. Then, our new friend left. I stopped him and thanked him for taking us on such short notice. I also gave him a hook'em horns from Jack...he was a Texas alum where he received his bachelors. He seemed amused as I told him Jack wanted to get on his good side. I then thanked him again especially for giving us the news through the grapevine days ago that helped make things that much more bearable over the weekend while waiting to see him. He said something to the effect of, you don't go to a brain doctor because you want to go to a brain doctor. Somewhere during our meeting he had told us that he had 7 kids. This is a man who must really like some kids. Before we left Susie and I would both shed some happy tears. The news was good. Jack wasn't done yet but the news was good.
That night, we would get an e-mail from Trumble copying us on the letter summarizing our session which he was sending to our pediatrician, Kalter. Suddenly, I felt like we were in control again. The conspiracy was no longer holding together. At the same time, I began to realize, this thing was possibly going to go on for years to come.
Our appointment rolled around after yet another weekend of waiting, researching, and playing with Jack. By Monday, Susie and I were getting used to this. Load Jack up, head to the medical region of Orlando, pretend like we aren't worried, and prepare for what we can't prepare for and the unknown. Trumble's office is located right next to the Children's hospital where Jack was born. As we drove up we spotted a very rare car, a Lotus, that stood out in the parking lot. By far the nicest and most expensive car I have seen in, well, probably years. On the pavement in front of the car, Trumble's name was painted. Today we would purchase a few tanks of gas for our new friend and his sporty fun machine, I thought.
Jack was teething we thought and was not sleeping or eating well for the past few nights. We took him upstairs to the office waiting room, Susie checked us in, and I struggled to keep Jack entertained. The office was decorated with fish stickers all over the walls from Finding Nemo, the same movie we watched in the lobby while awaiting Jack's CT scan when this all began about 2 weeks ago. The stickers did not succeed in making the lobby any less sterile or intimidating for me. At least 5 kids waited to see the doc with various visible signs of head injury/problems. One sitting closest to us I suspect was about 10 with a very large head, probably the result of hydrocephalus or "water on the brain". Another, across the room, about 2 years old, wore a helmut. I wasn't sure why but I assumed it was the result of a head injury or possibly to protect a recent, unhealed surgery. Another child of about 8 sat with a bandage on her head looking dazed. Yet another child, a baby, sat covered in a carrier. Her mother sat talking with, who seemed likely to be, her mother. They talked about the possibility of needing to move closer to the children's hospital indicating that the problems the baby in the carrier was dealing with may be long term. Further, they commented frequently on Jack who I was attempting to placate unsuccessfully by flying him through the air to look at the fish on the walls. Eventually, both Susie and I took turns running him up and down the hallway and in and out of the lobby. Everyone eventually stopped to look at the youngest, visible patient in the lobby and comment on how cute he was. I avoided eye contact as not to engage in any conversations about his condition, know full well I could not handle hearing about their child at this point.
Finally, we were called back into the office after about 45 minutes. The examining room was just like any doctor's office over looking a lake. It was decorated for children, especially those who like Batman. A nurse, who Susie would later tell me was probably Trumble's wife based on her nametag, greeted us by asking if Jack had been there before. Not taking no for an answer, she asked if he had been in surgery before, possibly when first born? We again said no. She then said that he seemed soooo familiar to her. Somehow I was bothered by this, thinking that this meant he looked like someone who has problems with his brain...for that is who she sees all the time, I thought. She looked at him without a smile, examining him briefly with her eyes. She asked us a few questions about the shape of his head, saying his head was quite flat on the back which, of course, we were aware of but not concerned about. She then stated, that Trumble would read to us his opinions on the findings of the MRI but she added that he would also likely recommend treatment options for his head shape! Suddenly, there was more. I was refusing to even discuss his head shape for it seemed trivial at this time. She went on to mention that a "band" may be necessary adding that his head shape may even be correlated with other problems!!! She then ended with a look of worry, asking, can he move his head this way. Jack eventually turned to look at her, as if to say, "what's your problem crazy lady". She sighed in relief, indicating that this conversation wasn't going to get more convuluted and worrisome than it already had. She then told us that Trumble would be in to see us shortly and left. I was happy to see her go and Susie and I talked about her poorly for several minutes until Jack started laughing. We played with him until Trumble came in.
Trumble made his entrance, laptop on a portable desk in tow. He smiled and looked at each of us introducing himself in a very calm, pleasant, and serious manner. He then discussed the plan to review the results and asked if we would both sit with Jack. My adrenaling was flying but I was ready to sit down. He quickly indicated that he felt the news was good. He turned the laptop to face us and began talking to us about the pictures of Jack's brain/skull. An empty area above the right hemisphere, Trumble explained, indicated what amounts to a likely Arachnoid Cyst that was probably but not definitely there since birth. He then discussed the nature of these cysts as benign and that their main threat when outside of the brain is in their unpredictable nature in terms of putting pressure on the brain causing mass effects (or midline shift). He indicated that the pix indicate that this cyst seems to be putting some pressure on the brain but does not appear to have caused any mass effects or brain damage. We talked about our family hx and Jack's lack of obvious symptoms and normal development to date. Trumble indicated that before the meeting with us, he felt like surgery was probably the best option. At this point, he indicated that he felt we should wait and monitor the cyst for effects due to Jack's presentation as "normal" and without symptoms.
Trumble then changed the subject to Jack's head shape. He stated that Jack fits the dx for benign positional pagiocephaly, basically translating to misshapen head. He discussed how this happens, stating that it is due to babies sleeping on their backs. I had read about it already and was somewhat familiar. I understood it to be cosmetic only. Trumble indicated that it would be our choice to put him in a band. He then retrieved a band which was actually the same as the helmut I had seen earlier on the child in the lobby. He said, as long as Jack doesn't wear his hair like me (completely bald) then it probably wouldn't even be noticeable once his hair grew in. However, he added that he recommended we start it soon or else it would be too late as the skull would become hardened and less maleable. We asked to think about it and wait, indicating we were doing everything possible already to reduce the time he was laying on his back. He indicated that this was a good strategy and gave us a script for the helmut if we chose to go that route within the month.
Quickly, I changed my attention back to the cyst. Trumble indicated that if he needed to do surgery he thought the procedure would be relatively uncomplicated. He then indicated that the cyst WAS in a very unusual location and presented some possible problems with regard to fenestration (draining) which may warrant the placement of a shunt. He added though that either way he felt it would go well and we should wait, get an MRI again in 3 months, and reexamine the results at that point. He seemed confident and, therefore, I felt more confident. I then asked how we would no if the cyst was creating problems, like the possible brain damage or midline shift he had referred to. He then indicated that at Jack's age this would not be easy suggesting that it would most likely result in changes in eating and sleeping habits as well as moodiness and eventually it would effect his development and motor skills. I told him about the teething symptoms sounding very similar to the first few signs he mentioned and he agreed that there was no easy way to know. I asked, if there were signs of effects on the brain what would the consequences be, in other words, would brain damage be irreversible? He indicated that as long as we continue to monitor him, no, any damage would not have long term effects and would correct itself following surgery.
The session ended. We discussed our possible plan to change pediatricians and became aware that Trumble had had breakfast with Kalter the day before. He did however seem to fully understand. He acknowledged the predicament we were in wanting quality of treatment along with social mores. Then, our new friend left. I stopped him and thanked him for taking us on such short notice. I also gave him a hook'em horns from Jack...he was a Texas alum where he received his bachelors. He seemed amused as I told him Jack wanted to get on his good side. I then thanked him again especially for giving us the news through the grapevine days ago that helped make things that much more bearable over the weekend while waiting to see him. He said something to the effect of, you don't go to a brain doctor because you want to go to a brain doctor. Somewhere during our meeting he had told us that he had 7 kids. This is a man who must really like some kids. Before we left Susie and I would both shed some happy tears. The news was good. Jack wasn't done yet but the news was good.
That night, we would get an e-mail from Trumble copying us on the letter summarizing our session which he was sending to our pediatrician, Kalter. Suddenly, I felt like we were in control again. The conspiracy was no longer holding together. At the same time, I began to realize, this thing was possibly going to go on for years to come.
Saturday, March 4, 2006
Gotta Have Connections To See The Neurologist
So that night after getting the news about Jack's MRI results I lost it. I mean lost it. Susie and I were sitting on the couch discussing what we'd just heard from the pediatrician. Now we knew for sure...this wasn't going away yet. We still did not know however if we were dealing with brain tumor, just a cyst, and what the prognosis was. Everything we read though pointed to the fact that this was likely a benign cyst within the skull. Further, it pointed to the likelihood that Jack was at some point going to go through surgery to have it removed and would possibly be living with a shunt (a surgically implanted contraption to drain fluid from the head to the abdomen). Still, this was not by any means set in stone. Most of the other likely outcomes were much, much worse. To this point, I had not cried except for when they took Jack to do the MRI and even then it was just a few tears. Suddenly, I was out of control. Susie just hugged me and she cried along too. I finally got ahold of myself after about 1/2 an hour. We both decided to start calling our immediate family to notify them of the results and the plan.
When I called my parents, I was reeling from our pediatricians suggesting that this was nothing to be urgent about and that if the neurologist was going to take a week or two to get us in, that was okay in his opinion. I wanted to get moving. Western medicine is notorious for waiting and being reacitive and I didn't want to be subjected to this any longer. My parents happened to know a doctor from the neonatal unit at the hospital where the MRI occured. She also happened to know that neurologist our pediatrician referred us to. My father called her right after I gave him the news. Eventually, I ended up on the phone with her and she offered to help us get in to see the neuro (Dr. Trumble). At around 8pm, on a Friday night, I got a call back from this amazingly helpful woman who apparently was waiting in her car at a local high school for her kids to return from some school function. She proceeded to tell me that she had already spoken to Dr. Trumble who pulled up the MRI results over the computer and told her that the cyst did not appear cancerous and that even if surger was necessary, he felt it would be relatively uncomplicated. Further, he agreed to see us Monday morning. I told Susie. We were elated. We could eat dinner after all. We smiled and laughed about everything and nothing until going to bed that night.
The next morning we woke up to pick up the order from our pediatrician to see Dr. Trumble as it was necessary for insurance purposes. I felt as if I finally one upped the man who seemed to take everything in too much stride. I went in his office ready to announce to him, "we know someone who knows Dr. Trumble and we're already in; please just give us the order". I walked in and the office was in chaos. They had just opened and were clearly overbooked. The office was filled with children and their parents. Only two staff members were on which was clearly not enough as they usually have at least 3 or 4. Dr. Kalter sat reading some files visible through the lobby/check-in window. He said he had spoken with Dr. Trumble and indicated, to his surprise, Dr. Trumble was already aware of Jack and had even already seen his MRI pix. I told him how this came to be, as if to say, we don't need you any longer. He then said, not knowing what else to say and seeming a little like a child who just got smacked for saying no to his parents one too many times, "we're going to move ahead with this". I said, "excuse me", more due to not knowing what that meant. He repeated, "we're going to move on and take care of this". Still not knowing what he meant, I realized he probably didn't know what he meant either. We stopped talking and he called a patient back.
Still standing at the reception window, I waited for a staff member to ask me what I was there for. Finally, a woman said, "what do you need". I told her that Kalter indicated I needed to pick up a prescription to see the neurologist, Dr. Trumble. She looked confused. Then, the same woman who I had argued with previously in order to facilitate getting our MRI scheduled, indicated that the individual in charge of that was not available. Further, she added, I don't know when she will be in because she is already late. I lost it, again. I told her Kalter had told us to come in the morning adding that someone would help us get the appointment scheduled and take care of this. She then tried to explain why Kalter should not have promised us that adding that, even once the woman who was late came in, she would not be able to get to this until sometime that afternoon. I told her I would be expecting a call by 11am or I was going to be calling back every 15 minutes until it was done.
At 10:45am, while sitting at the library with Susie and Jack reading free books, we got the call. Everything was ready. We were set to finally see the one person that could tell us what the hell was going on and what our life was going to be like, at least in the near future.
When I called my parents, I was reeling from our pediatricians suggesting that this was nothing to be urgent about and that if the neurologist was going to take a week or two to get us in, that was okay in his opinion. I wanted to get moving. Western medicine is notorious for waiting and being reacitive and I didn't want to be subjected to this any longer. My parents happened to know a doctor from the neonatal unit at the hospital where the MRI occured. She also happened to know that neurologist our pediatrician referred us to. My father called her right after I gave him the news. Eventually, I ended up on the phone with her and she offered to help us get in to see the neuro (Dr. Trumble). At around 8pm, on a Friday night, I got a call back from this amazingly helpful woman who apparently was waiting in her car at a local high school for her kids to return from some school function. She proceeded to tell me that she had already spoken to Dr. Trumble who pulled up the MRI results over the computer and told her that the cyst did not appear cancerous and that even if surger was necessary, he felt it would be relatively uncomplicated. Further, he agreed to see us Monday morning. I told Susie. We were elated. We could eat dinner after all. We smiled and laughed about everything and nothing until going to bed that night.
The next morning we woke up to pick up the order from our pediatrician to see Dr. Trumble as it was necessary for insurance purposes. I felt as if I finally one upped the man who seemed to take everything in too much stride. I went in his office ready to announce to him, "we know someone who knows Dr. Trumble and we're already in; please just give us the order". I walked in and the office was in chaos. They had just opened and were clearly overbooked. The office was filled with children and their parents. Only two staff members were on which was clearly not enough as they usually have at least 3 or 4. Dr. Kalter sat reading some files visible through the lobby/check-in window. He said he had spoken with Dr. Trumble and indicated, to his surprise, Dr. Trumble was already aware of Jack and had even already seen his MRI pix. I told him how this came to be, as if to say, we don't need you any longer. He then said, not knowing what else to say and seeming a little like a child who just got smacked for saying no to his parents one too many times, "we're going to move ahead with this". I said, "excuse me", more due to not knowing what that meant. He repeated, "we're going to move on and take care of this". Still not knowing what he meant, I realized he probably didn't know what he meant either. We stopped talking and he called a patient back.
Still standing at the reception window, I waited for a staff member to ask me what I was there for. Finally, a woman said, "what do you need". I told her that Kalter indicated I needed to pick up a prescription to see the neurologist, Dr. Trumble. She looked confused. Then, the same woman who I had argued with previously in order to facilitate getting our MRI scheduled, indicated that the individual in charge of that was not available. Further, she added, I don't know when she will be in because she is already late. I lost it, again. I told her Kalter had told us to come in the morning adding that someone would help us get the appointment scheduled and take care of this. She then tried to explain why Kalter should not have promised us that adding that, even once the woman who was late came in, she would not be able to get to this until sometime that afternoon. I told her I would be expecting a call by 11am or I was going to be calling back every 15 minutes until it was done.
At 10:45am, while sitting at the library with Susie and Jack reading free books, we got the call. Everything was ready. We were set to finally see the one person that could tell us what the hell was going on and what our life was going to be like, at least in the near future.
Wednesday, March 1, 2006
More Waiting And An MRI
The weekend following the CT Scan was long. Jack began teething again and decided to wake every two hours. Meanwhile, everytime he cried or ate significantly less or slept poorly, we worried it was due to the mystery in his little, big head. I was reading on the internet as much as possible. Not so much out of worry at this point but more because I wanted to be informed. When I'm sick, I worry. When Jack's sick, I worry but I also feel responsible. I feel like I have to know everything. I started reading everything. At some point, I decided that it was a cyst of some sort. These things were rare however even though everyone wants to tell you how common they are. FAct is, 1 in 100,000 infants has a cyst in their head. So, no matter what people tell you, it's relatively rare.
So Monday rolled around. Jack couldn't eat after 5 am on Monday morning and his appointment wasn't until the afternoon. He could have Pedialyte and/or water up until the appointment. It went better than we expected. At some point, he didn't want the Pedialyte and eventually refused water as well. I couldn't guess how hard refusing food to your baby is when he's hungry. Even without crying, I felt guilty. It goes against everything about being a parent to deny your baby their basic needs.
Anyway, the longest day ever flew by in the beginning. Before I knew it we were packing Jack up for the hospital. We got their an hour early with hopes of getting out early. We were checked in quickly and went to the radiology unit of the hospital. Jack, wearing his medical i.d. was no different than any other day, except he was hungry. After about 15 minutes we were called back and given a hospital room for preparing Jack. The nurse talked to us about the procedure. She was very difficult to understand due to a thick accent. I felt the need to clarify everything. I didn't want to misunderstand anything or agree to anything without knowing.
Then it got a great deal harder. We were briefed on the anesthesia and the risks and procedure to follow. We had to sign a release allowing this which indicated the side effects and possible mishaps associated with the procedure. The nurse was very interactive with Jack in the meantime and it was clear she loved babies. After about a half hour, the anesthesiologist came to visit and ask some questions. Jacks vitals were taken. Another 15 to 30 minutes went by as Susie and I entertained Jack, making him laugh and not letting on their was anythging to worry about.
Then, the nurse said they were ready. Suddenly I was confonted with the unexpected. The nurse turned to me, as I was holding Jack at the moment, and said, "Can I take him from you?". I looked at Susie instinctively and felt myself move away without thinking. Then I said, "yes", feeling the tears building in my eyes. I kissed Jack and moved him to Susie for her to kiss him as well. I told him I would see him in a few minutes and handed him to the nurse. My face became the streets of Spain and tears ran down it like the crazy people during the running of the bulls. I lost it. The nurse reached out to Susie to hug her and Susie very assertively and respectfully said, "no, please don't, thank you, but no". Then I turned to Susie and hugged her. For the first time ever, we had given our baby to the trust of a stranger at a time when we leased wanted to do so. Susie and I stood there, surrounded by medical instruments like needles, heart monitors, iodine, knives, and other sterile, shiny devices of which I hope to never know the purpose, holding one another and crying.
At some point we headed to the hospital cafeteria to get a drink. Susie ate an ice cream which she said was not even remotely satisfying. We meandered back after 20 minutes and waited in the lobby of the radiology unit to be called back to see our son. Finally, our nurse appeared after what seemed like hours but was only about 30 to 45 minutes. She stopped and talked with someone first, laughing about life, and then made her way to us.
Next thing I remember is seeing my baby boy. Tubes connected to his face and arms, eyes barely opening, he made sounds I never had heard before. He moaned, clearly confused and drugged. I wanted to snatch him and run but I didn't. We had to wait two hours during which he slowly returned to himself. We fed him and waited to be sure he didn't get sick due to the drugs. Finally, the nurse allowed us to leave early.
Once again, I told Jack to clear his head, as I didn't want to return.
I called to let Dr. Kalter's office know we had finished and was told it would probably be 2 days before we were given results. The hospital had told me a week so this was good news. After 2 days, I called everyday to check for the MRI results. I asked on the 2nd day if there was a way to make the process go faster because Susie and I were going insane. The receptionist told me there was nothing we could do. I added, "what if it's serious". She stated, "I'm sure it's not serious or they would have notified you by now", adding that they call people immediately when the results indicated something serious, typically. I hung up wishing she'd never said that.
Neither of us were going to work. I knew the call could come at anytime and also knew I didn't want to be away from my family when this happened. We were basically on 24 hr make Jack laugh patrol. I felt like I was getting to bond with Jack in ways I never could because of all the extra time I was getting with him. Jack started to smile at just the sight of me walking into a room, every time. It was very rewarding. However, the wait was excruciating. Every minute was interupted by the possibility of bad news. The what ifs were flooding through my brain and I was doing everything I could to hide them from Jack. Meanwhile, I was keeping clear limits with family to keep everyone from inquiring about the status until we knew something.
Finally, on Friday at around 6 pm, we got the call. Susie spoke with Dr. Kalter who quickly told her the results. I saw her face...she was concerned. Once again, the phone was given to me for Dr. Kalter to repeat the results, an all too familiar chain of events. Kalter informed me that a cyst was found on the outside of the brain within the skull putting what appeared to be pressure on the right side of the brain. Then, silence. I asked quickly, "what does this mean?", "what do we do next?". Kalter indicated the next step was to see a neurologist. I asked how to go about that and he stated we needed to pick up a referral from him and then call the neurologist. I asked him how urgent this was. He said that we should act with intention but it was not necessary to panic at this time. I asked to pick the script up in the morning and he said it would be ready by the time they opened at 9 am. I wrote down the name of the neurologist which he indicated may take some time to get an appointment with. I asked if there was a way to speed up the process and he indicated, with some apparent annoyance, there was not. He then said someone at his office would help us get the appointment set up tomorrow when the script was picked up. I then asked, "how serious is this, I mean could it be cancerous". His reply, "probably not". Then I told him we would be at his office first thing to get the script. I hung up.
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