Orion's Blog

Orion Marvelous Burman has left us

2008-02-08T17:30:00.000-07:00

At 10:37 AM February 7th Leigh discovered that Orion was gone. He died in his sleep. He had a low grade fever for the previous few days and the night before it shot up to 103. We packed to go to the emergency room and just as we were ready to go he fell asleep and his fever had came down to 102.2. The fever appeared to be subsiding and he was finally getting at least a little rest after a day and a half. We thought we should let him rest and take him to the hospital in the morning. We finally got some sleep too as it was 5 AM at this point. I woke up to get Alexis ready for school. I touched Orion and he was warm as if he didn't have a fever. I figured he was just sleeping so soundly because the fever had broken and he could finally get some rest. However in retrospect I think he was already gone by that point. Leigh called me as I was driving back from dropping Alexis off at school and told me "he's gone". I arrived home 5 minutes later after driving behind the slowest driver on earth for the last 6 blocks. The Police arrived a minute later, then the fire department, then the EMTs, then the victim advocates, then the detectives. They were all very compassionate and gave us plenty of time to say good bye to Orion.

It has been an honor to know Orion in his short time on this earth. He has taught us so much already about the nature of unconditional love and he is still teaching. He was so sweet and lovable after the open heart surgery. He came home no longer needing oxygen and he was so smiley and interactive. Reaching for things and truly being a part of this world. It is hard to believe he gone when I held him in my arms only 36 hours ago. It is hard to let him go but I will hold on to the beauty I see in him for the rest of my days.

His life had perfect symmetry. He was in the womb 9 months and three days and lived for 9 months and three days. He was born at 10:37 AM and was found by Leigh at 10:37 AM. He died in the room where he was born in the completion of his journey here on earth. I see this symmetry as confirmation of the divine nature of his mission to help us all find the way to love each other and ourselves. Thank you Orion for being my son and giving me the opportunity to know you and love you.

There will be a memorial service on Sunday, February 10th at 3:00. The service will be located at The 63rd street farm (3796 N 63rd St. Boulder, CO). All who love Orion are welcome.

2008-02-08T16:52:00.000-07:00

2008-02-08T16:49:00.000-07:00

Recovering after the surgery

2008-01-31T13:35:00.000-07:00

Orion and his brown dog Riley share a moment during his recovery from open heart surgery. Check out those staples. Pretty crazy.
For those that are interested I had the nurse take a picture of Orion with his chest open. It is not for the faint of heart but if you are interested let me know and I will e-mail it to you.

Back from surgery fully tubified

2008-01-31T13:31:00.000-07:00

Off to surgery

2008-01-31T13:27:00.000-07:00

Orion gives the thumbs up

2008-01-31T13:23:00.000-07:00

Getting a little love before the surgery

2008-01-31T13:13:00.000-07:00

The surgery is a success

2008-01-22T09:49:00.001-07:00

YAY. Orion made it through the surgery just fine. Apparently it was quite tricky but with the help of his trusty chocolate milk Dr Mitchell was able to pull it off. He had a little fever last night but he seems to be recovering well. More info and pictures soon.

Monday is the big day

2008-01-20T16:32:00.000-07:00

On Monday morning Orion is going into surgery to fix the hole in his heart. Keep him in your hearts and prayers. Thank you everyone.

2007-12-28T09:44:00.000-07:00

Orion had a goood Christmas in the hospital. The next day however he had a little incident that had him moved to the Cardiac ICU. He seems to be doing okay after a litle infused blood and some extra oxygen. Iris dropped by and hung out with him for a while before we took her to the airport.

Just to see if we were paying attention

2007-12-03T18:22:00.000-07:00

Apparently the cardiology team has rediscovered doubt as to whether surgery is the right thing to do at this time. It seems they just realized he wasn't your average cardiac patient and need to review some things before they proceed. So as of now the surgery on Wednesday is cancelled . However, the cardiology crew is going to have a get together Tuesday to discuss his case and after that they will have a plan. This plan may still include surgery this week or next.

As you can imagine the yo-yo effect is somewhat annoying to say the least. I guess all we can do is love him and be present in the moment. That being said I wish they would make up their damn minds already.

Open Heart Surgery Wednesday

2007-12-03T11:14:00.000-07:00

Orion has been in the hospital for the last week or so with a blood infection. They are treating that with IV antibiotics. As soon as he is done with his last round of antibiotics they are planning on doing the open heart surgery. They think this will happen Wednesday. It will be a pretty intense week for us so keep us in your thoughts and prayers as they repair our son. Orion has been relatively stable since he was admitted a week ago, Friday.

2007-12-03T11:01:00.000-07:00

MRI Results

2007-12-03T10:58:00.000-07:00

The results from the brain MRI show underdevelopment of the optic nerve and the cerebellum which handles balance, coordination. and other yet to be defined functions of integration and error correction. The neurologists said that there is no way to accurately predict what that means for his general cognitive ability but we could expect some level of developmental delay. That being said, in the last week or so he has been more engaged with the world than I have ever seen him. His nystagmus(involuntary darting of the eyes) was almost unnoticable enabling him to focus on faces and objects. He is so very beautiful.

MRI Day

2007-11-12T09:04:00.000-07:00

Today is the day. We go in at 1:30 for Orion's MRI's. These will tell us what is going on as far as the hole in the heart goes. This is the last test the cardiac folks must have before they assemble the grand conclave of cardiologists at Children's to determine how to fix Orion. In addition to the cardiac MRI they are doing today they will also be performing a brain MRI which will tell us if there is something physically wrong with his brain. The ultrasound they did a while back showed everything normal but the MRI is much more precise. All we can do now is pray for the best and see how it turns out.

Blast from the past

2007-11-12T08:59:00.000-07:00

This is from his early days at the hospital.

Leigh and Orion have a moment

2007-11-12T08:56:00.000-07:00

Leigh catches a wink

2007-11-12T08:47:00.000-07:00

Leigh catches up on some much needed sleep while Orion is still up hanging out.

Hi There

2007-11-12T08:36:00.000-07:00

Orion has had a rough couple of weeks. He was hospitalized with pneumonia for a few days a couple of weeks ago. He had another visit to the hospital last week due to dipping oxygen saturation levels and general discontent. They didn't have a good reason why we had to keep upping his oxygen intake but they did have a few guesses. Their best guess was that his lungs were getting a little "wet" due to the hole in the heart. They presribed a diuretic and that seemed to take care of the issue.

Also last week he was being cranky for a few days with a slight fever. When we asked about it at the doctor's office they asked us if he was getting any teeth in. We initially dismissed the idea as silly but then upon further examination, sure enough he is getting his lower front teeth. With all the crazy stuff going on with Orion we completely missed the normal explanation.

Orion has been keeping us busy at the Burman household.

Father and Son

2007-11-12T08:21:00.000-07:00

Alexis opens b-day present

2007-11-12T08:20:00.000-07:00

Alexis' birthday was last week and Orion had a front row seat at present time.

Alexis and Orion

2007-11-12T08:14:00.000-07:00

Hi I'm Alexis

2007-11-12T08:12:00.000-07:00

Brother and sister get some quality time.

Alexis helps Orion do his visual exercises

2007-11-12T08:10:00.000-07:00