I cannot believe it has been a little over TWO YEARS since I have written in this blog.
Working full time and parenting has been a bit crazy...
And while I created this blog years and years ago to address the journey of figuring out why I was in so much pain, thus becoming more of a blog about Neurofibromatosis, my life has actually now been more centered in surviving my stomach cancer surgery. (As per my last major blog discussing my medical life and my eating disorder). There is so much to say but since I prefer this to be a chronicle of my life, I will go back in time to explain the happenings:
I confess that I have not done so much about my eating disorder other than recognizing that I have one. I think coming to terms with it has helped though. But I think as time went on, things about life just got better? While I struggle sometimes still with finding time to eat, when I do eat, I eat more. I have been working HARD and SUCCEEDING with gaining weight, so that's great! I have less anxiety about eating in front of people. I just still have a hard time eating when I should because I still don't really feel hunger in the way most other people do. But I am working on it. I have to.
Some updates since November 2016:
January 2017 Oliver turned THREE. And we learned never to have a party at a venue type place ever again. Too much money and stress.
We decided to move to Brookline from Quincy and decided to transition him to a Brookline preschool so he didn't have to endure too many adjustments at once.
In March, we sadly said goodbye to the caregivers who knew him from 7 months old. Best people ever.
And thus began the really crappy 4 months of commuting from Quincy to Brookline to work to Brookline back to Quincy until we finally moved. While 2-3 hours each way really sucked, Oliver became a cityboy with a major obsession with the MBTA.
August 2017 we moved and only really stayed in our first place for 11 months when we had to move again (June 2018) so our landlord could sell his house (he never ended up selling). We like our new place better. We are now directly on a transit line much to Oliver's glee.
Anyway, back to summer 2017--
When Oliver got to his Brookline school, some developmental delays became apparent...most compounded by his suffocatingly severe case of ADHD (especially inattention). While people might pounce on me and yell "you cannot possibly diagnose a 3 year old with ADHD" and I would tell you that you are WRONG in Oliver's case. He was really struggling. So many months of testing later, we got confirmed ADHD with anxiety, most likely because his inattention was really suffocating for his ability to learn and interact with his peers. He also had severe speech deficits (most likely due to his inattention/inability to focus which caused him to be extremely self conscious) so he started speech. He did well, and made progress, but he still struggled. Months later we decided to medicate (non stimulant). And now he is absolutely thriving. His teachers and speech therapist and doctors are all so surprised with his 180 turnaround. He still needs a lot of redirection but he can be REACHED-- a huge milestone. He talks a lot! He doesn't offer much in the way of imaginative/abstract words/ideas, but he can actually answer questions you ask him and offer follow up questions...and he tries to participate in conversations with relevant ideas to the topic, and less of interrupting with whatever is on his mind. With the success of medication we added OT for his motor skills deficits and we are very proud that after a few months of hard work, he can now write ....he couldn't even pick up a pencil before! He can write all capital/lower case letters and numbers over 100. He likes writing 120 for some reason.
In the mean time, he turned 4 :)
He is now in pre-Kindergarten and thriving. Words cannot express how grateful I am that none of his caregivers/teachers ever gave up on him in his worst of times. We attribute all his success to his Quincy daycare providers and Brookline teachers -- and his therapists-- for always loving him, encouraging him, and teaching him. If we didn't have this help in our lives I don't know where Oliver would be now. He has memorized a lot of words so he can "read" many stories to us.....he knows ALL the MBTA stops. He can even read some street signs. If anything happened to us, he could lead people to take him home both by car and by train.He can tell you how to get to our apartment from the airport by train :)
Developmental Milestones since turning 4:
WRITING!
Dean Road is a stop on the C line.
This video was taken more recently, but here is an example of his motor coordination that's he's working diligently on in OT
But going back to his MBTA obsession, here is his MBTA song (basically the First and Last stops of each Green Line Train with the exception of the D line (Gov Center/Riverside)- he forgot them....his favorite line haha.
Not long after moving to Brookline, however, (it's very hard to write 2 years of updates totally in chronological order), our beloved cats Chaucer and Dante died. Feline Infectious Peritonitis. Dante succumbed first. It was literally 48 hours between Dante being normal to being critical, and then being dead. Chaucer probably could have made it longer but he was profoundly distressed by the sudden disappearance of his buddy and we had to let him go, too. It's been a little over a year now and their loss is so very present in our little house hold. My heart is still so heavy.
We donated their bodies to science. They were used in an autopsy class of all things, which allowed us to get the formal cause of death (FIP).
And now on to current:
John has thrived in his job and has been promoted recently! His book also came out in PRINT this past summer!
Next week, Little O turns FIVE.
Next month , Feb 25, I will have a Total Gastrectomy.
I will write an entire blog or 6 dedicated to this.
Life is busy but good. We have had a lot of fun adventures in the gaps of my blog
NYC
Warwick NY
Edaville Train Park
Chicago
Family came to Boston to visit!
New Hampshire Hot Air balloon festival
Santa Express Train in CT
Philadelphia....
Oliver loves traveling and experiencing new transit systems, and now buying toy subway trains from cities we visit.....
We also tried putting him in soccer but yeah... not a good fit for him :)
Side note-- aside from soccer, we tried putting him in swimming ourselves in January 2018 and that failed. BUT he goes swimming with his PreK class and loves it. So there's that :)
AND FINALLY, we (especially ME) are gearing up for my huge life changing event that is quickly coming up.
More to come.
Working full time and parenting has been a bit crazy...
And while I created this blog years and years ago to address the journey of figuring out why I was in so much pain, thus becoming more of a blog about Neurofibromatosis, my life has actually now been more centered in surviving my stomach cancer surgery. (As per my last major blog discussing my medical life and my eating disorder). There is so much to say but since I prefer this to be a chronicle of my life, I will go back in time to explain the happenings:
I confess that I have not done so much about my eating disorder other than recognizing that I have one. I think coming to terms with it has helped though. But I think as time went on, things about life just got better? While I struggle sometimes still with finding time to eat, when I do eat, I eat more. I have been working HARD and SUCCEEDING with gaining weight, so that's great! I have less anxiety about eating in front of people. I just still have a hard time eating when I should because I still don't really feel hunger in the way most other people do. But I am working on it. I have to.
Some updates since November 2016:
January 2017 Oliver turned THREE. And we learned never to have a party at a venue type place ever again. Too much money and stress.
We decided to move to Brookline from Quincy and decided to transition him to a Brookline preschool so he didn't have to endure too many adjustments at once.
In March, we sadly said goodbye to the caregivers who knew him from 7 months old. Best people ever.
 |
| September 2014 |
 |
| March 2017 |
And thus began the really crappy 4 months of commuting from Quincy to Brookline to work to Brookline back to Quincy until we finally moved. While 2-3 hours each way really sucked, Oliver became a cityboy with a major obsession with the MBTA.
August 2017 we moved and only really stayed in our first place for 11 months when we had to move again (June 2018) so our landlord could sell his house (he never ended up selling). We like our new place better. We are now directly on a transit line much to Oliver's glee.
 |
| Watching the Green line with his Green line toy train |
 |
| Watching train from living room |
Anyway, back to summer 2017--
When Oliver got to his Brookline school, some developmental delays became apparent...most compounded by his suffocatingly severe case of ADHD (especially inattention). While people might pounce on me and yell "you cannot possibly diagnose a 3 year old with ADHD" and I would tell you that you are WRONG in Oliver's case. He was really struggling. So many months of testing later, we got confirmed ADHD with anxiety, most likely because his inattention was really suffocating for his ability to learn and interact with his peers. He also had severe speech deficits (most likely due to his inattention/inability to focus which caused him to be extremely self conscious) so he started speech. He did well, and made progress, but he still struggled. Months later we decided to medicate (non stimulant). And now he is absolutely thriving. His teachers and speech therapist and doctors are all so surprised with his 180 turnaround. He still needs a lot of redirection but he can be REACHED-- a huge milestone. He talks a lot! He doesn't offer much in the way of imaginative/abstract words/ideas, but he can actually answer questions you ask him and offer follow up questions...and he tries to participate in conversations with relevant ideas to the topic, and less of interrupting with whatever is on his mind. With the success of medication we added OT for his motor skills deficits and we are very proud that after a few months of hard work, he can now write ....he couldn't even pick up a pencil before! He can write all capital/lower case letters and numbers over 100. He likes writing 120 for some reason.
In the mean time, he turned 4 :)
He is now in pre-Kindergarten and thriving. Words cannot express how grateful I am that none of his caregivers/teachers ever gave up on him in his worst of times. We attribute all his success to his Quincy daycare providers and Brookline teachers -- and his therapists-- for always loving him, encouraging him, and teaching him. If we didn't have this help in our lives I don't know where Oliver would be now. He has memorized a lot of words so he can "read" many stories to us.....he knows ALL the MBTA stops. He can even read some street signs. If anything happened to us, he could lead people to take him home both by car and by train.He can tell you how to get to our apartment from the airport by train :)
Developmental Milestones since turning 4:
WRITING!
Dean Road is a stop on the C line.
 |
| Over the weekend I got a Peppa Pig Shirt |
This video was taken more recently, but here is an example of his motor coordination that's he's working diligently on in OT
But going back to his MBTA obsession, here is his MBTA song (basically the First and Last stops of each Green Line Train with the exception of the D line (Gov Center/Riverside)- he forgot them....his favorite line haha.
Not long after moving to Brookline, however, (it's very hard to write 2 years of updates totally in chronological order), our beloved cats Chaucer and Dante died. Feline Infectious Peritonitis. Dante succumbed first. It was literally 48 hours between Dante being normal to being critical, and then being dead. Chaucer probably could have made it longer but he was profoundly distressed by the sudden disappearance of his buddy and we had to let him go, too. It's been a little over a year now and their loss is so very present in our little house hold. My heart is still so heavy.
 |
| Dante died November 30, 2017 |
 |
| Chaucer died December 4, 2017 |
 |
| Their eternal paw prints. |
And now on to current:
John has thrived in his job and has been promoted recently! His book also came out in PRINT this past summer!
 |
| My author! |
Next week, Little O turns FIVE.
Next month , Feb 25, I will have a Total Gastrectomy.
I will write an entire blog or 6 dedicated to this.
Life is busy but good. We have had a lot of fun adventures in the gaps of my blog
NYC
 |
| December 2016 |
Warwick NY
 |
| July 2017: When I was his age, I played here! |
Edaville Train Park
 |
| August 2017 |
Chicago
 |
| October 2017 The Bean |
Family came to Boston to visit!
 |
| May 2018 Swan boats! |
New Hampshire Hot Air balloon festival
 |
| Summer 2018 |
Santa Express Train in CT
 |
| December 2018 |
Philadelphia....
 |
| December 2018 |
Oliver loves traveling and experiencing new transit systems, and now buying toy subway trains from cities we visit.....
We also tried putting him in soccer but yeah... not a good fit for him :)
Side note-- aside from soccer, we tried putting him in swimming ourselves in January 2018 and that failed. BUT he goes swimming with his PreK class and loves it. So there's that :)
AND FINALLY, we (especially ME) are gearing up for my huge life changing event that is quickly coming up.
More to come.
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