Brextin's Hope: I wonder why certain things happen in life?

Monday, January 18, 2010

I wonder why certain things happen in life?

I thought we were on a right path with the increase of his generic Keppra to 1ml since - Brextin has been 4 days seizure free - however . . .

I just heard from my relative in Madison and they just mentioned that Brextin just experienced a very bad seizure - lasting about 3 to 4 minutes and that they needed to administer Distat - which is a drug that is given in the behind to help end the seizure. I have been informed - it helped end the seizure and that he is currently just in a daze - if he is unable to snap out of it - he will he heading to the nearest ER -

It just burns me - that I am 3 hours away from him and am unable to do anything but pray. Why is it that my son has to go through so many battles and obstacles - hasn't God figured out that my son has had enough road bumps in his life that he deserves to have smooth road ahead of him.

I am so frustrated that I could place my head in a pillow and just scream!! I just wish I could wrap him in my arms - eeergh!! I HATE these seizures!!!

2 comments:

Andi SJanuary 19, 2010 at 9:02 AM
Your post brought back horrible memories from 2007. My daughter was 4 months old and staying with her big brother at their grandparents house while my husband and I were at a wedding in Las Vegas (we live in Michigan). We suspected seizures but were waiting for our appointment for an EEG. The seizures got so bad that my parents made the 1.5 hour drive to see her neuro. While I stood in a smokey casino I got the phone call that that they had done an EEG and were sending her immediately to the Children's Hospital to be loaded up with Phenobarb. The helplessness that we felt was so immense. All we could do was try to fly back home earlier the day we were supposed to leave while Grandma and Grandpa cared for both of my kids. You're not alone! Praying for you & Brextin!!!
ReplyDelete
Replies
HelenJanuary 28, 2010 at 11:49 AM
It seems that life for some people is just harder from day one than for others. Is it fair? Why does it happen to good people? Why does God allow it to happen? These are questions a lot of good people ask when adversity comes. I've had my share and asked these questions. At some point I decided that God must have very special plans for me or He wouldn't spend so much time sending lessons (repeating some) trying to mould me into what He originally had in mind for me. Brextin 's life has been a series of lessons for you and your family. Lessons in unconditional love, patience, hope, faith . . . . Wouldn't it have been nice and a whole lot easier if God's plan for you was just normal everyday people. But He had a bigger plan for you, and extraordinary plan called Brextin. So when it's tough and you feel like crying or lose hope just remember you were selected for this role because God had faith in your ability to do it. My prayers for you all. Helen
ReplyDelete
Replies

Add comment

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)

Monday, January 18, 2010

I wonder why certain things happen in life?

2 comments:

Followers

Current seizure medicines

Alternative products/therapy that we have tried or plan on trying

Helpful sights about the disorder

Please feel free to contact me - click on the word "Email" below.