Brextin's Hope: Brextin is doing awesome by eating by mouth!!

Friday, October 30, 2009

Brextin is doing awesome by eating by mouth!!

We have been struggling with him eating by mouth ever since he got his G-tube - but lately he has been doing AWESOME!!! The toughest meal is breakfast - for whatever reason he doesn't open his mouth as easily at breakfast as he does at lunch and dinner.

My mom is currently in the hospital recovering from a total knee replacement - while visiting her today - Brextin munched on a sugar cookie - he almost ate the whole cookie by mouth - he was even chewing - - I light up when I see him eating things orally -

Please keep my mom in your prayers as she recovers from her knee surgery and continue to pray for Brextin as we continue to see improvements.

I am hoping to post pictures of Brextin in his lion custom tomorrow -

I am in the process of getting a wingbo swing http://www.wingbousa.com/index.htm for our little guy - I luckily have found a used one via Craig's list - it does not come with the long ropes - but I could get the ropes from the company later on for $35.00. I am just waiting to find out how much shipping will cost. I think it will make a wonderful Christmas gift for him. I am just really glad that I was able to find one much cheaper than the asking price for a new one.

1 comment:

PrayforNathan.orgNovember 5, 2009 at 7:23 PM
Hi! I found your site on Google and lo and behold, the boy in the wingbo from momsincommon is my son! Small world! My son also receives CME medek therapy and he's starting HBOT in a week. I am so glad to hear that Brextin is improving! My son's site is prayfornathan.org
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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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Friday, October 30, 2009

Brextin is doing awesome by eating by mouth!!

1 comment:

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