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Friday, May 28, 2010

We have extra g-tubes Bolus extensions with cath tips - do you know someone who could use them?

When my son was feed via g-tube we used the Kimberly - clark MIC-KEY bolus extensions sets with Cath tip - secure-lok straight connector and clamp - and we would be willing to pass these tubes onto other families that would be able to benefit from them

We were only allowed two a month from the state - in fears that bacteria would grow in the tube - we bought additional ones from ebay - and now that he is an angel - we would like to pass these onto another deserving family -

We have about 30 of them - most are 12 inches Please email me or leave a comment on this blog if you are interested - and indicated how we can communicate.

(depending on shipping costs - we might need to stay within the US)

I have posted this to two of my list serves that I belong to - but no takers - which amazes me - so if you know someone who could use these please pass this information along.

Wednesday, May 26, 2010

Last article about our son, Brextin - Leader Telegram

Here is the last article on our son that was written by Christena T. O'Brien - printed by our local newspaper, www.leadertelegram.com - on May 12, 2010

Joys, challenges of young boy's life remembered

Randi and Andy Stanley planned to celebrate their youngest son Brextin's third birthday Thursday.

Instead, the Eau Claire couple attended his funeral Tuesday.

"Brextin was a true angel," Randi said, "and I believe God gave him to us for a reason. He touched so many people, and I have been touched by so many people because of him."

Born on Mother's Day, May 13, 2007, Brextin died May 6 at Children's Hospital in St. Paul, where he had been taken for a second-opinion electroencephalogram, or EEG, which is a test that measures and records the electrical activity of the brain.

About two months after his birth, Brextin, also lovingly known as "Brexy Doodles," was diagnosed with West syndrome, or infantile spasms, a rare and serious form of epilepsy that usually affects babies younger than 1.
He also had microcephaly, a condition that is present at birth in which the baby's head and brain are smaller than normal for an infant of that age and gender, and he struggled with vomiting almost from birth.

The day before Brextin's death, "he looked great, and he was as happy as can be," Randi said. "I never thought that would be the last day he would be like that."

The number of Brextin's seizures began to increase, and by May 6 he was having about 12 a day, Randi wrote on her blog, Brextin's Hope. When he had a seizure, he would often vomit, and some of the contents of his stomach were inhaled into his lungs, and he developed pneumonia.

Randi had left the hospital at 3 p.m. May 6 to return home to Eau Claire to take the couple's older son, Brayden, who will turn 6 in August, to kindergarten orientation. She got a call about 10 p.m., asking if she wanted Brextin put on a ventilator.

On her return trip to the hospital that night, she was told "he was getting his color back, and everything was looking good."

When she arrived, she found Andy in Brextin's hospital room, holding their son. Initially, she thought Brextin was sleeping - until she saw Andy's tears.

Devastated, Randi fell to the floor.

"I missed saying goodbye to my son," she said, breaking down. Brextin had died about 11:40 p.m.; she arrived around 12:15 a.m.

Two years ago, the Leader-Telegram featured a story about Brextin, detailing the struggles the little boy, then almost 1, and his family faced.

Since then, Brextin had made a number of strides, said Randi, who tried therapy after therapy with her son. He was able to sit, kneel on his hands and knees and stand if supported.

"We were told not to expect him to walk or talk," she said. "He would have walked. We firmly believe that."
That said, Randi has found solace knowing her son with the beautiful smile and special giggle no longer has to experience the vomiting, seizures or any sort of pain.

The Elk Mound school district business education teacher also has been touched by the caring of others, including her students, one of whom created the Facebook page Students Supporting Mrs. Stanley.

Hoping to give back, Randi is planning to put Brextin's therapy aids and toys into her family's garage one day and invite parents whose children might benefit from them to come by and help themselves. She plans to sell what isn't taken and use the money to establish a scholarship in Brextin's name for students with epilepsy who attend Elk Mound High School.

"Brextin's life took a toll on our family at times, but it was a good toll," Randi said. "I want parents of (other) special needs children to not give up hope. Take one day at a time and believe in your child."

Sunday, May 23, 2010

Looking for a site to print Brexitn's blog into a book

I plan on beginning to search for a site that will print our son's blog into a book - I am uncertain what it will look like since the video's of course won't print. If anyone has done this - I would love to be notified as to what site you used.

I also am thinking of starting a blog on my oldest child - and then using it more like an on-line baby book - then he too could have a book once he gets older - just a thought - I never seemed to keep his baby book up to date as it just sat in his closet- but maybe this would be easier - hhmmm.

I have three wishes . . .

I have three wishes . . . I wish everyone did the following while sending their condolences 1) write their names legibly 2) write first and last name 3) include their mailing address (two wonderful people included their mailing address – right at the bottom of the card) This was a god sent!! – So the next time you write a card – either for a wedding, graduation, funeral, etc – remember that tip – we know we will! Thank goodness for Yahoo - people finder!

Thursday, May 20, 2010

Brextin's life is passed on . . .

We have passed along all big items to about 8 to 9 local families in hopes that Brextin will live on through their children. These are some of the items that we used and found to be invaluable:

http://www.waterwaybabies.com/ (this is the wonderful neck ring we used for swimming, water therapy, and bathing)

http://www.ottobock.com/cps/rde/xchg/ob_com_en/hs.xsl/5164.html (this was his wheelchair - Otto Back Kimba stroller/wheelchair) The base came off so it could have been placed on a spider base - Brextin could sit on the floor so we never took the seat off of the base.

https://ssl202.chi.us.securedata.net/~arktherapeutic/Merchant2/merchant.mvc?Screen=CTGY&Store_Code=ATSI&Category_Code=Z-Vibes-Tips-Kits (A great site for oral motor tools and special cups) (We used the z-vibe and many attachments - we had a ton more tools than any therapist had that we visited)

Here is the link to the special cups that we used https://ssl202.chi.us.securedata.net/~arktherapeutic/Merchant2/merchant.mvc?Screen=CTGY&Store_Code=ATSI&Category_Code=CIPKUP and this is the link for our honey bear that we used to squeeze liquid into his mouth - http://www.talkingchild.com/shop_HoneyBearCupwithStraw.aspx

http://www.flaghouse.com/AAI-FOLDING-MAT-5-X-10-BLACK-item-18139 Exercise mat. We did his at home exercises on a mat like this.

http://www.amazon.com/Folding-WEDGE-Incline-30x72x12-Spotting/dp/B0014P60I6 Folding wedge - this was used to work on rolling and for sitting on an angle.

http://www.wingbousa.com/ (site for the wingbo - a great therapy swing) We bought ours off of Craigslist - best investment.

http://www.adaptivemall.com/sosionsi2.html (soft sitter chair - ours needed the replacement straps since we never used them and misplaced them)

http://www.merrymuscles.com/ (This is what he bounced in - it also comes in one for children with special needs - http://merrymuscles.com/product_info.php?products_id=30&osCsid=de73430b8434a869f715323e0f930f42

Therapy centers: http://www.naturesedgetherapycenter.org/(Rice Lake/Chetek)http://www.specialchildrencenter.com/ (Hudson) http://www.communicationinnovations.com/ (Madison)

Oxygen center - http://www.wisconsinhyperbarics.com/ (Madison)

MEDEK therapy - http://brextinshope.blogspot.com/2009/08/azriel-novogroder-is-our-medek.html

Special needs bumbo chair (we never used this): http://www.childrite.com/story.html or http://www.childrite.com/childriteseat-info.html

Special needs chair for grocery carts (we never used this) - http://cgi.ebay.com/Infant-Support-Chair-special-needs-babies-/130340375679?cmd=ViewItem&pt=Feeding&hash=item1e58e44c7f
They are working on one for bigger children as well

http://www.therapro.com/Therapros-2010-Product-Catalog-P17528C17524.aspx? (A good catalog for toys and other items)

Saturday, May 15, 2010

Paying it forward - through the life of my son, Brextin

We are paying it forward with all of Brextin's items - if anyone would like to send me a message and we could arrange a time for you to check out his toys - that would be awesome

I kept buying and buying new and new toys in hopes to find the perfect toy and now that he is an angel in heaven we want to be certain that those toys go to homes that would benefit from them -
We live in the state of WI.

Most toys are intended for those under 12/18 months.

thank you so much!

A mother of a true angel!

Friday, May 14, 2010

A mother's day wish from Heaven (I love this!)

I just got this from a past student of mine - I truly love it!

A Mother's Day Wish From Heaven

Dear Mr. Hallmark,
I am writing to you from heaven, and though it must appear.
A rather strange idea, I see everything from here.
I just popped in to visit, your stores to find a card.
A card of love for my mother, as this day for her is hard.
There must be some mistake I thought, I saw every card you could imagine.
Except I could not find a card, from a child who lives in heaven.
She is still a mother too, no matter where I reside.
I had to leave, she understands, but oh the tears she's cried.
I thought that if I wrote you, that you would come to know.
That though I live in heaven now, I still love my mother so.
She talks with me, and dreams with me; we still share laughter too, Memories are our way of speaking now, would you see what you could do?
My mother carries me in her heart, her tears she hides from sight.
She writes poems to honour me, sometimes far into the night.
She plants flowers in my garden, there my living memory dwells.
She writes to other grieving parents, trying to ease their pain as well.
So you see Mr. Hallmark, though I no longer live on earth I must find a way to remind her of her wondrous worth.
She needs to be honoured, and remembered too Just as the children of earth will do.
Thank you Mr. Hallmark, I know you'll do your best I have done all I can do; to you I'll leave the rest.
Find a way to tell her, how much she means to me Until I can do it for myself, when she joins me in eternity.

Thursday, May 13, 2010

Pay it forward

Today we gave gifts for Brextin's birthday -

First we visited the school in which he was scheduled to attend and donated his adaptive bike.

Second -we visited the assitive technology teacher and donated his glitter/music/vibrator base pin toy

Third we visited our local food pantry and donated his baby food/spoons and diapers

Fourth we returned a switch we got on loan from our local UCP office

Fifth we dropped of medical supplies to a local man who was diagnosed with cancer and currently doesn't have any insurance to pay for feeding tube items

After we did all of the above we went to a monument store and picked out his flat headstone. That was pretty tough - we have decided to have some sunflowers engraved on it and an etching of his memory garden up in the corner. My husband and myself will be listed on his headstone as well as our resting spot - we figured our oldest son would be laid to rest with his future family.

We also released three balloons into the air in hopes they would hit heaven to be with our big birthday boy who turned 3 today!

Happy Birthday Brextin!!!

Today we will be picking our healthy boy up at the funeral home and taking him home in an adorable urn where he will be spending his 3rd birthday with us, his parents and big brother. We will also be picking up 4 balloons. One balloon will read, Happy 3rd birthday - this one will be laid on his resting spot in Forest Hill Cemetery, where the other 3 balloons will be released to the skies of heaven.

He will be forever in our hearts!

Our local newspaper did a wonderful follow up article on our son - it was titled,
"Joys, challenges of young boy's life remembered"

Here is the link - unfortunately they are now making people pay to read the article - but maybe in the days to come it will be available through a different website.

http://www.leadertelegram.com/local_news/story/article_d26c1b62-5d7d-11df-a7c8-001cc4c03286.html

Wednesday, May 12, 2010

Holding on

Our son's service yesterday was beautiful, a wonderful gal who has touched our lives forever gave a heart warming eulogy, my husband and I were able to share some long lasting memories with our family and friends, his music therapist performed "beautiful boy" which summed his life up in two words, and a wonderful student performed a song that he had written for our little Brexy. All in all - a very memorable day - we will certainly miss our little angel!

We were to lay him to rest today - however my husband and I thought things were moving to fast - so we have decided to slow life down - and bring him back home - his body will be cremated and placed in a beautiful urn and join us once again in our loving home.

We are doing a couple of things in remembrance of his life :

The first thing - will be to purchase a granite brick (8" X 16") that will be placed at a local zoo in his memory - that will read . . . "In memory of Brextin - our Brexy Doodles - May 2007 - May 2010)" that will placed in an area just for special children who left our world way to early.

The second thing - is a memory garden will be created (a landscaper is actually coming today) it will be filled to the max with a ton of sun flowers and forget me not flowers.

I am really overly whelmed with the love and support of friends, neighbors, family and even strangers! God Bless our little Brexy!

Tuesday, May 11, 2010

One word "Unbelievable"

Last night was our precious son's visitation and I must say I was so honored by all of the wonderful people that came out to provide prayers and their condolences. The visitation was scheduled for 5 pm until 7 pm - however the last person left a little after 9 pm - we had over 400 friends and family members that stopped by. We are forever blessed by everyone! Some people waited in line for over 2 hours to see either myself or my husband and I am overwhelmed by all of the support however am very comforted by it all!

Thank you thank you Thank you

Monday, May 10, 2010

I now understand why God had selected us to be Brextin's parents

I thank each one of you that have sent their prayers and thoughts to our family - they say that God often selects certain parents for his special children and I am beginning to understand why I was chosen - I truly enjoyed sharing all of Brextin's accomplishments with others as well as his set backs - it allowed others to know that no one is ever alone when it comes to raising a child with special needs and I am forever honored that some of you have followed our blog and thought of my son/family as an inspiration - to keep moving forward with certain therapies or just not give up in general -

I am forever touched by the many of parents, therapists, doctors, and children that we have met over the years - and will forever have a place in my heart for each and everyone of you!

Sunday, May 9, 2010

The days just get harder and harder

I got up this morning with a deep pain in my stomach - I knew I had to go and take the very long walk to the mailbox to see my precious son's obituary in the paper. It sure was tough to include everything - if we have missed anyone we are forever sorry. We were told to have it to our funeral director by 1:30 yesterday and I kept putting it off - I just didn't want to write it and say goodbye to our loving son. All in all - I think it gives a good representation of our son's life. He will be forever missed!

He was also survived by the following aunts and uncles: Staci (Cowan) Kauman, Jenny Duke, Karla and Doug Dehnke, Beth and Dan Marcus, Pete and Lori Stanley, along with over 12 cousins.

http://www.leadertelegram.com/people/obituaries/article_ca65f6d3-c1a3-547f-977c-9d27b83be4ec.html

Saturday, May 8, 2010

I love you more! What a great book!

I read Brextin the same book EVERY day of his life - I never missed a day - the book was titled, I love you more - http://www.amazon.com/Love-You-More-Laura-Duksta/dp/1402211260 and it was so true - I loved our son more than anything in the whole wide world - we were defiantly blessed with an angel!

Beautiful Beautiful boy

Beautiful Beautiful boy - thinking of having this song sung at his funeral.
http://www.youtube.com/watch?v=Uldu_1-JCJE&feature=related

http://www.youtube.com/watch?v=HN96-pHFlsM&feature=related

Friday, May 7, 2010

Here are the funeral arrangements

Visitation will take place on Monday at Fuller Speckien Hulke on Rudolph Road from 5 until 7:00.

Funeral will take place on Tuesday at Our Saviors Lutheran Church on Main Street in Eau Claire at 11:00 with visitation one hour before.

I am thinking about creating a scholarship in Brextin's name and offering it to those students who have suffered from epilepsy and who have attended the school in which I teach at.

We would like to thank all of his therapist and all of the many other parents who have connected with while he was with us - I have met a ton of amazing people!!

Brextin is now an angel up in heaven



Our son was born on Mother's day almost three years ago - so he would have been turning three on the 13th of this month - however he will be celebrating his special day with the angels above.

Here is a video of him that was taken on the first day of his EEG at the Epilepsy Group in St. Paul (this past Wednesday). He looks fantastic- I never new it would be the last day we would see him happy as can be.




I never thought I would be typing this on his blog - our son has been a true fighter through everything - however his life will continue as he walks in heaven's arms.

He was born on Mother's Day almost three years ago - and his special journey began when he was only two months old - he has struggled with seizures and vomiting almost since day one.

It all started when we were scheduled for a second opinion EEG and something occurred that we were not expecting - his seizures began to increase - and by Thursday he was having about 12 a day - as our son had seizures he would often vomit - and because his tiny system was backed up (not able to have a bowel movement) - his stomach wasn't emptying as it should - and so when he had seizures - the food kept coming up and it eventually entered into his lungs - which caused him to have pneumonia - they pumped his chest for over one hour - and eventually gave up.

I am at a total lost - I never thought I would be laying my youngest son to rest -

As you look at the videos posted above - he looked fantastic- I never would have thought - that he would only be around for one more day.

I tried therapy after therapy with our son - and I now know that he is finally walking, running, and talking up a storm up in heaven with his Great Grandpa and Uncle.

We were blessed to have known such a wonderful boy - he had a contagious smile and a heart of gold.

Peace be with anyone else who is traveling along a special child's journey. I am so at peace knowing our son is no longer having seizures, vomiting, or having any type of pain.

Thursday, May 6, 2010

Things are NOT good!

Brextin is currently at St. Paul - having another EEG done - he had two seizures yesterday and at least 6 more today - one that lasted over 2 minutes. They were going to give him some velum but luckily the seizure stopped. Since Keppra isn't working we are going to try trileptal, lamictal, or tegretol. I think our first attempt will be the trileptal drug - but they plan on keeping on Keppra - as well. I would prefer not to give him a cocktail - but at this moment in time - I just wish I could stop seeing my son having to suffer through all of these seizures - It is really making me depress especially since he is approaching his 3rd birthday next week.

After some of his seizures today he looked very lethargic, pale, short of breath, he was even experiencing hot flashes. His oxygen levels even dropped as low as 70% during one of his seizures that happened while he slept. These are the ones that scare me the most!

We sure need the prayers - and I mean a ton of prayers!!!

Sunday, May 2, 2010

Honeyemoon is over :-(!

Brextin is having about 2 seizures a day - we will be heading to a hospital in the cities for a second opinion this week - he will be under observation for a 2 to 5 day EEG - we are hoping we are able to find a medication that will control his seizures 100%. Please continue to pray - It seems as if topamax controlled his seizures in the past - but the side effects are tough to ponder.

I have been noticing our counter on this blog is increasing which is WONDERFUL - I am interested in knowing what are visitors reading - is it his blog in general or certain videos such as MEDEK or certain links? Nobody has been leaving comments - which I truly enjoy to read.

One more thing this website was shared with me and thought I would pass it along . . . http://www.exceptionalfamilytv.com/about