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Thursday, April 30, 2009

This is the picture that was in the Leader Telegram for his benefit

This was the picture that was in the Leader Telegram for his benefit. There will be a HUGE thank you in the Sunday issue of the Leader Telegram - I have been trying to upload it to his blog - but it keeps saying there is an internal error.

Sunday, April 26, 2009

Brextin gets tubes placed in his ears.

We are still going strong with no vomiting issues - it has been truly amazing - I think it has been over 8 weeks!! This morning he threw up a little, but nothing like in the past - he has been doing well - he just had tubes inserted into his ears - since he was born he has had over 12 ear infections so they decided it was time. Plus it will help a ton during his Hperbaric Oxygen Therapy treatments - I won't have to be concerned if he is swallowing enough to clear the fluids in his ears - this will prevent the possibilities of his ears to rupture during treatments.

However - as always - nothing went smooth during his appointments - since our appointment was at 7:00 am we had to leave home awfully early - around 5:00 am - so we had to get him up around 4:30. They had finished prepping him for surgery and left the room for a little while and he was getting restless so I rocked him to sleep while I was holding him - and as soon as the nurse entered the room - she said something - and her voice ended up - startling Brextin, which caused him to have a seizure - his eyes opened WAY up and then he got stiffed - I quickly placed him on the floor and the doctors all watched as he had a seizure - the doctors even thought he had stopped breathing for a little while and asked if this was the norm - all we could respond with was "Yep"

So then after seeing him have a seizure the doctors were unsure if they wanted to go through with the surgery since it was an elective surgery and that we could re-schedule - he apologized and knew that we didn't live near by and that we both had taken the day off of work - but didn't feel safe to continue - he then talked amongst his peer doctors and decided since Brex was known to have seizures and it wasn't anything new that they would go threw with the surgery as long as we agreed to it - so we did go through with it -

Since Brextin tends to be worn out after a seizure all he wanted to do was sleep so they didn't want to give him to much gas - since they wanted to make sure he would be able to wake up - but as soon as they made the first cut - he woke up - so they ended up giving him more gas - and then when he was returned to the hospital room - he just wasn't himself - he was very squirmy - I had mentioned to the doctors the only time we see him like this - is when he is in pain so they gave him some pain killers and shortly afterwards he fell asleep and was fine -

Currently he is doing good - lately when he jumps in his device from the ceiling we have noticed his feet turn shades of purple - so we are continuing to observe - we have noticed this often when he is wearing his AFO shoes (special braces for his feet) we just often thought they were fitting his feet to tight - but I think it is lack of circulation within his body -

I am so anxious to hit the road for therapy - only about 6 more weeks -

Sunday, April 19, 2009

We had success!!

Thank you to all who came out to our son's benefit - we had over 600 people attend - it was truly amazing - we had over 175 businesses that helped make it a success -

A huge thank you needs to be shouted out to our committee members -
These are all true Angels!!

Gay, Candice, Kathy, Staci, Rachael, Peggy, Darcy, Peggy, Mary Ann, Jane, and Gerri

Now the toughest part - waiting 8 more weeks until we hit the road for his therapy treatments -

Brextin has been doing wonderful - we have had some setbacks from vomiting and couple of seizures here and there but nothing like in the past- so we really can not complain - we just have to look to the future.

I plan on keeping this blog as he goes for treatments in Madison - so please continue to read our blog as more will be added as the days go on.

Saturday, April 18, 2009

Today is the Day - Hope to see you at the Benefit!!

Today is the day of our son's benefit - It is at the High School in Elk Mound - signs will help you lead you in the right direction.

Food being served from 11:00 until 1:30 or until we run out
Silent auction
Door prizes
Kids games
Thrift-sale (kid stuff only)
A ton of activities

His benefit will end around 3:30 - 4:00

Hope to see you there!!

Friday, April 10, 2009

Things are going well for his benefit!

Things are going well for Brextin's benefit - I am in the process of purchasing a lap top computer so I am able to take it with me - while I am in Madison - I plan on up keeping this blog updated- so other people will be able to track his progress -

I also will be purchasing a web camera so my husband will be able to see him in "real" time if we are able to see any "BIG" improvements - and especially so I am able to see and to connect with his older brother -

I will be finding staying away from my oldest son - very difficult while I am with Brextin in Madison for those 27 days. I am uncertain if I will be driving home on the weekends - the long drive does not interest me (3 1/2 hour drive) and once I get home - I will need to head back since we dive every morning at 8:30, except weekends.

The Hyperbaric center (HBO) in which I am going to is in Fitchburg, Wisconsin - the center is called, A place of Grace also known as Wisconsin Integrative Hyperbaric Center here is a video of the center as well - Shannon actually operates the center (she is Grace's mother). Grace is a darling little girl who was able to re-live through Hyperbarics - if you were interested in seeing a video about her and what exactly HBO is click here. . .
Part one
Part two:
Part three: (you can see the actual center in which we will be going to and the procedure of hyperbarics by watching this video)
Part four: (updated 2008)

Brextin has Infantile Spasms (seizures), vision, cognitive and physical problems - however our son does not have a mitochondria disorder, - I am praying for success - just as Grace has - my mom tries her best to keep me grounded - not all individuals see success with Hyperbarics - but I as a parent - need to at least try and do all that I can for our precious son -

So I ask if you are reading this and are in the area of his benefit - please help and spread the word - so each and everyone who appears will be able to help make difference in his life -

The benefit is scheduled from 11:00 until 4:00 at Elk Mound High School
We will be serving spaghetti from 11:00 until 1:30 or until we run out (we have had wonderful sponsors in the Chippewa Valley to help supply the food and supplies: Indian Head Food Warehouse, Rinehart Foods, Pepsi and Pactiv)
Other events that are planned are:
Silent auction
Cupcake walk
Thrift sale (just my kid stuff)
Kids games
Fire trucks
Finger printing

Thank you to all of the businesses which have been supportive while planning this event and especially for family, friends, and total strangers that have helped in organizing this wonderful benefit - THANK YOU!

Sunday, April 5, 2009

Seeing improvements!

Just this week - we have noticed that when we hold onto his waist or his hands and have him walk towards us - he actually is beginning to lift his foot and move it forward - it just brought tears to my eyes - I am hoping I can get it on video and then I will post it -

This at no means - indicates that he will begin to walk today or tomorrow - because he still lacks the balance in the middle half - but it is an improvement - we have in the past just slid his feet as we had our feet behind his and but now he is actually lifting and moving his OWN feet - it has been amazing!!

There is HOPE!

I sure hope I can get a short video soon -

Plus he still hasn't vomited - we are hoping we will continue to see improvements now that he is actually keeping his food and nutrition down.

Donations are pouring in for Brextin's benefit :-)

Tonight we have a meeting with our committee members - to help gather and to take care of loose ends for Brextin's benefit -

We even have a wonderful lady (Sherry) who is from the Infantile Spasms list serve -that has connections in LA - and we just got David Hasselhoff's signature he is a judge on the show America's Got Talent - she has also sent a Wheel of Fortune package as well.

Our wonderful team has been able to gather a TON of baskets filled with a lot of donations from local Chippewa Valley businesses - for our silent auction and for door prizes -

We are also planning on having fire trucks and a police officer present to finger print any children - if parent's desire. Venue of course are subject to change.

We are now trying to gather up all of our food donations so we will be able to serve the spaghetti dinner from 11:00 until 1:30 or until we run out -

I am so anxious to gather up items around our house for the thrift sale as well - when I turn around I just see clutter - I keep buying more and more toys hoping to find the one toy that Brextin will take an interest in - and they just seem to accumulate – with no hope –

I also have high hopes that Brextin will be able to play with his older brother’s toys in the future (example, a toy that you sit on and push using your legs) – but in reality it probably isn’t going to occur – so selling Brayden’s toys will be so painful – and if my hope of dreams do occur then I guess I can buy new – but clutter seems to be everywhere I look – and I need it to all go!

Words can not express how forever grateful I am for all of our friends, family, and total strangers that are allowing this benefit to occur and are helping for it to be so successful - we are so thankful!