Brextin's Hope: YUCK colds!!

Saturday, November 21, 2009

YUCK colds!!

I am worn down by the biggest cold!! It started out with a dry throat then I began to loose my voice - then a cough started - and now lovely mucus has moved in - it has been a very rough week - I even took a day off of work - which I never do because I have to use all of my sick days for my son's appointments - The worst thing is - that Brextin has the same cold - we took him to the doctor but they told us we have to let it take its course - he and I keep waking up in the middle of the night just coughing and coughing and coughing - and with Andy hunting - it has even tougher to stay strong -

I am hoping that Brextin gets healthy soon - because he is scheduled to get a MRI next Friday - (the reason why this is scheduled - is because our neuro doctor thinks something has structurally changed in his brain and wants it confirmed - his last MRI was done when he was around 4 months old at the start of all of his health issues) which happens to be a vacation day for me - I am praying for no scary news - I am debating if I take a handicap service van to Mayo or I go with my day care provider - who has been a HUGE support system for us - I do know that I am in no means ready to do it alone - in case there will be bad news. Andy had asked me to postpone it since he will be hunting but he too has missed a ton of work due to Brextin's many doctor appointments - so I think it is best that I complete this appointment on a vacation day.

Please pray for our son as he receives a MRI on the day after Thanksgiving - and help prove our neuro doctor wrong and that everything has remained the same and everything is going to be ok - as he pushes forward to further success on his development.

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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

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Saturday, November 21, 2009

YUCK colds!!

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