Brextin's Hope: Pay it forward

Thursday, May 13, 2010

Pay it forward

Today we gave gifts for Brextin's birthday -

First we visited the school in which he was scheduled to attend and donated his adaptive bike.

Second -we visited the assitive technology teacher and donated his glitter/music/vibrator base pin toy

Third we visited our local food pantry and donated his baby food/spoons and diapers

Fourth we returned a switch we got on loan from our local UCP office

Fifth we dropped of medical supplies to a local man who was diagnosed with cancer and currently doesn't have any insurance to pay for feeding tube items

After we did all of the above we went to a monument store and picked out his flat headstone. That was pretty tough - we have decided to have some sunflowers engraved on it and an etching of his memory garden up in the corner. My husband and myself will be listed on his headstone as well as our resting spot - we figured our oldest son would be laid to rest with his future family.

We also released three balloons into the air in hopes they would hit heaven to be with our big birthday boy who turned 3 today!

1 comment:

Kari OulahyaneMay 13, 2010 at 10:26 PM
You are a truly inspiring family. I've been thinking of you guys constantly since last Friday and just wanted to thank you again for sharing Brextin's life with us. I am happy that today, on his 3rd birthday, he is not sick anymore and is not having any seizures. Many hugs and prayers to your family from mine in Maryland.
Kari, Jayden's Mom
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History of Brextin - May 2007- May 2010

Our son was born on Mother's Day in 2007 - we thought everything was fine - when he was born they did wisk him away because he was swallowing fluid - so they suctioned the fluid out and placed him on extra oxygen - just to be safe - they said I had nothing to worry about - he should be fine -

We noticed from day one he had a very pour suck - he also had a vomiting problem - it seemed that he threw up everytime he ate - then he ended up having a poop issue as well - every diaper was a messy diaper - so we were sent to the doctor - they placed him on a special formula - thinking he was protein intollerant -

The poop issue ended, but not the vomiting - at about 2 months of age - he got his immunization shot and 4 days later he stopped eating - we were rushed to the hospital - where he remained for 10 days - they did test after test - and found nothing - except that his head was smaller than the norm and sent us on our way -

Our local ped doctor checked over the reports and wanted a second opinion - so we were sent to Mayo - they claimed that he could have seizures - however none were noted yet - but the brain pattern was present - then about 1 month later - the seizures started to appear - so we had another EEG and that was when he was DX with Infantile Spasms -He was then placed on two types of seizure medicines - vigabitran or Sabril and topamax. Two years later - he is now off both of those drugs - but is currently taking generic Keppra.

We tried intensive therapy, Hyperbaric Oxygen therapy, and MEDEK therapy in June of 2009 - in hopes it would help him further his development. By doing these therapies over the summer - has allowed him to be able to get into 4 point and rock back and forth.

We just completed a second round of oxygen treatments - and currently he is learning how to suck - which he has never been able to do - so this is a huge milestone. He still is unable to crawl, communicate or stand independently (but will stand when placed up against a wall). We plan on attempting AIT training over the Summer. (he died before this was attempted)

Our son had a rocky start for his first three years of his short life, but he made a ton of strides, we were hoping he would have beat the odds of this terriable disorder, however we sadly lost our son one week before his 3rd birthday - we were in the process of receiving a second opinion on his condition at a hospital in the cities - and we have no idea what happened but he was called to the Lord above to become his angel right while we were in the hospital.

He began to vomit during each seizure which caused aspiration which spread to phenomena which took his life in just a couple of quick hours. I still cannot believe it – he was bouncing in his bouncer and sucking on his fingers just 24 hours before his death – however the heavens now have a very special angel and we have a very very special guardian angel who will watch over our family each and every day. He will be forever missed!

Brextin's Hope

Search Brextin's Blog (type in Medek, Oxygen therapy (HBO), Wingbo, neck ring,G-tube, etc)

Thursday, May 13, 2010

Pay it forward

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