Brextin's Hope: A wonderful weekend and Monday!

Monday, June 29, 2009

A wonderful weekend and Monday!

Grandma and Brextin

Brayden pushing Brextin

Hives on Brextin's foot

Brother's how sweet!

What a wonderful weekend - it was nice to escape with my husband and oldest son along with my parents to the Dells - I will try to post some pictures later tonight - I am updating the blog from Brextin's therapy center - and do not have the correct cables along -

Nothing surprises me anymore - we very seldom get to enjoy a relaxing event without something occurring with our little angel - Brextin - we have no idea - if it was the heat or the chlorine but his legs broke out with hives - He has swam in other public pools - but maybe the Wilderness has a Very high level of chlorine - plus his body is unable to sweat - due to the seizure med - called toppamax.

This is what it says on the Internet - One of the drug's side effects is inadequate sweating -Some children who take Topamax may not sweat enough in hot weather, causing their body temperatures to rise, sometimes to dangerous levels. Children should be monitored in hot weather to be sure they sweat appropriately. http://www.rxlist.com/topamax-drug.htm or http://www.epilepsy.com/medications/p_topamax_commonside

Today was a fantastic day! I will attach a video of Brextin walking with a walker - he was actually taking steps and he walked back and forth in the therapy room - it was amazing - he also was balancing himself on the dizzy disk really well as well. Plus one of his therapist used a flashlight to shine on a book and his eyes followed the flashlight to the different pages - it was really nice to hear about these improvements - We are currently have finished 26 dives -

I am wondering if I can do a photo album - if not I will post a couple of photos in a couple different posts -

Keep the prayers coming - I sure do appreciate all of the letters along with the prayers that have been sent - my cousin has been forwarding the mail onto me - feel free to leave a comment on his blog as well - I have changed it now that you do not need to be a register user.

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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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Monday, June 29, 2009

A wonderful weekend and Monday!

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