Search Brextin's Blog (type in Medek, Oxygen therapy (HBO), Wingbo, neck ring,G-tube, etc)
Monday, December 27, 2010
Monday, December 20, 2010
I see the countless Christmas trees around the world below
With tiny lights, like Heaven’s stars, reflecting on the snow
The sight is so spectacular, please wipe away the tear
For I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear
But the sounds of music can’t comparewith the Christmas choir up here.
I have no words to tell you, the joy their voices bring,
For it is beyond description, to hear the angels sing.
I know how much you miss me, I see the pain inside your heart
But I am not so far away, we really aren’t apart.
So be happy for me, dear ones, you know I hold you dear.
And be glad I’m spending Christmaswith Jesus Christ this year.
I sent you each a special gift, from my heavenly home above.
I sent you each a memory of my undying love.
After all, love is a gift more precious than pure gold
It was always most important in the stories Jesus told.
Please love and keep each other, as my Father said to do
For I can’t count the blessing or love he has for each of you
So have a Merry Christmas and wipe away that tear
Remember, I am spending Christmas
with Jesus Christ this year
By S. Guevara
Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped them with a delivery date and away they would go to the parents who eagerly awaited their arrival. Things usually ran pretty smoothly.
One day, however, down the conveyor belt came a little miracle that made the angels pause. "Oh my," said the first angel "this one's uhm...well...different." "Yes, he is unique" said the second angel. "Well I think he is quite special," said the first angel "but I don't think he will quite fit our standard wrapping procedures." And the second angel added, "And we know he's special, but will everyone else?" "Not a problem," said the third angel "obliviously a special miracle deserves extra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special he is." "What a wonderful idea!" replied the othims. So they searched the shelves high and low for their finest paper, and their most delicate ribbons.
When they were done, they stood back and admired their work. "Beautiful!" they all agreed. "Now for our blessings," said the third angel "for it is time for him to go." "I will bless him with innocence and happiness," said the first angel. "And I will bless him with strength to face the many challenges that lie ahead" said the second angel. "And I will bless him with an inner beauty that will shine on all who look upon him" said the third angel. Before sending him off the third angel, who was very wise, gently tucked a note inside.
And it said,
Today you have received a very special gift. It may not be what you were expecting and you may be disappointed, angry and hurt. But please know that he comes with many blessings. And, while time may be pain, he will bring you much joy. He will take you on a very difficult journey but you will meet many wonderful people. He will teach you patience and understanding and make you reach deep inside yourselves to find a source of strength and faith you never knew you had. He will enrich your lives and will touch the hearts of all who meet him. He may be fragile but he has great inner strength.
So please handle him with care. Give him lots of attention and shower him with hugs and kisses. Love him with all your heart and he will blossom before your eyes. Him spirit will shine like the brightest star for all to see and you will know that you are truly blessed."
Sunday, December 12, 2010
Compassionate Friends organize the event.
The Compassionate Friends, with nearly 630 U.S. chapters, is the nation’s largest self-help bereavement organization for families going through the natural grieving process after the death of a child. Members include bereaved parents (or anyone in that role), siblings, and grandparents.
For more information, visit www.compassionatefriends.org or call the National Office at 877-969-0010. TCF’s Facebook Page with more than 14,000 members can be reached through the organization’s website at www.compassionatefriends.org. The organization also has an Online Support Community with trained moderators and daily sessions.
Saturday, December 11, 2010
I have been struggling these past few days - like yesterday - I just began to cry while driving down a road. The night our son left us keeps flashing in my memory after hearing we just another member's son. I keep replaying it step by step. Getting the phone call around 10 pm while sleeping with my oldest son - and picking up the phone only to hear that Brextin has taken a turn for the worst and that he was being placed on a breathing machine and that I needed to get to MN as soon as possible. I then quickly called my daycare provider who came over right away to help comfort me and to take my oldest son with her. (she only lives 4 blocks away) Then I called my parents and my in-laws to fill them in - my mom and dad came and got me and we quickly drove to the cities. On my way there I called every pastor that I knew and left messages asking for prayers then I started to text everyone I knew asking for even more prayers - I then received a call from Andy telling me that he was getting his color back and everything was improving. So I started to calm down. Then once we got to the hospital the ER has a special lock down so I had to push an intercom asking to get in to be rushed to the PICU - there was another family who arrived at the same time - their father just had a heart attack - we were able to hug each other for support (a total stranger) then once I got to the floor I heard a child who was babbling just like Brextin did and I thought everything was ok - until the nurse directed me to the only "glass" room in the unit - then I walked in to notice my husband holding our son- (who I thought was sleeping) only to glance up and notice my husbands eyes were totally bloodshot and that is when he said - "we have lost him" I quickly fell to the floor and just screamed - how could I have missed saying good bye to our son!! Especially since he was bouncing and babbling just the day before and even sucking on his fingers - where did everything turn ugly?? Then shortly after my parents entered the room as well - while I was holding our son with a breathing tube in his mouth (unconnected) and I had to tell them - we were too late to say our good byes - it was so painful to say those words! I even wore my shirt that read "Love and Hope for Brextin" in hopes of everything being ok - I continue to have save the same shirt since my son's blood remains on it and I will never wash it -
For some reason - I thought by me sharing or venting my story out one more time would give me peace - ooh how I miss my little guy - I sure do miss him this holiday season - oh how I miss him!!
We will be attending a local event tomorrow night - it actually a national event (World Wide) - at 7:00 pm tomorrow it is encouraged that everyone lights a candle in memory of the many children who have lost their lives so soon - I ask for anyone who is reading this right now - please please light a candle in remembrance of all of our children - thank you so much!
Friday, October 29, 2010
The best thing that I did was document his life - it will be a forever cherished item!
I do wish I would have started earlier - however I am blessed to have at least one year documented covering most of his accomplishments along with some of his setbacks! He was a true fighter and a loving son!
Monday, October 11, 2010
Tuesday, October 5, 2010
Saturday, October 2, 2010
Saturday, September 25, 2010
Heaven's Very Special Child
A meeting was held, quite far from earth
"It's time again for another birth,"
Said the angels to the Lord above,
"This special child will need much love"
His progress may seem very slow,
Accomplishments he may not show
And he'll require extra care
From all the folks he meets down there.
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent
We want his life to be content
Please, Lord, find the right parents who
will do this special job for you.
They will not realize right away
the leading role they're asked to play
But with this child sent from above
comes stronger faith and richer love.
And soon they'll know the privilege given
in caring for this gift from Heaven.
Their precious charge, so meek and
mild is heaven's very special child.
By John and Edna Massimilla (Chicken Soup for the Unsinkable Soul)
Wednesday, September 15, 2010
Friday, September 3, 2010
Plus we got a bill from the center in which we got our medical supplies from (Apria) - they now claim we owe them $71 for syringes - really - if they would have told me in advance that they were not covered under both of our insurance companies I would have sought out medical supplies from some place else (possibly ebay) (this is where I first got his feeding tubes)
They were sending me 4 syringes at a time - then one day the operator told me they could send me as many as 15 - I made certain to ask - now these will be covered correct - and she stated they would be - so I gave her the go ahead of sending them.
When you feed a child via a feeding tube - you need to have a ton of syringes since this is the ONLY way you are able to get food into their bellies - we were using olive oil on the syringe to make them last longer - but by getting more of them - caused life to be a little easier - but for $71.00 - I could have continued to use the olive oil and lived with it. Plus this bill is only for January - so I am sure more bills are on their way - URGH!!
Sunday, August 1, 2010
Sunday, July 18, 2010
Wednesday, July 14, 2010
I am so close to printing this blog into a book - I have found a wonderful site that allows it to be very easy - but will wait until I can add photos of his memory stone and of his memory garden. http://blogspot.sharedbook.com/blog2print/googleblogger/index.html
Sunday, July 11, 2010
We just got notified that his memory brick is in - to be placed in our local park or zoo - so we are now just waiting to hear when it will be "placed" into Irvine Park. I am excited to see it - Brextin's brick will be the very FIRST one that will include a photo.
Monday, July 5, 2010
Some of the items include:
* Baptism outfit
* Past Birthday/Christmas gifts
* Some of my favorite outfits that I lOVED seeing him in
* His favorite chew/rattle toys (there were a ton)
* His recent shoes and his "dinosaur" AFO shoes"
* His winter hat (which he never kept on) and coat
* His glasses (I can still envision him taking these off while I was driving and seeing them fly throughout the van) What a naughty boy.
* A TON of photos and videos (especially this blog) I am forever grateful that I kept a journal of his life- we were NEVER told that he would live a short life. (I still need to find the time to make it into a book)
* A special dog that he got from Rochester Mayo (A pound puppy - that each time you would pat his back he would bark - no switch was needed - his tail would also wag)
* Three Linus blankets that he got throughout his short life (the 4th one is in heaven with him)
* All of his Leader Telegram articles
* Plus a ton of other items
* A special pair of pj's that we saw him standing up in for the first time while holding onto a toy. We were so impressed with him!
Gosh I miss our little guy (it sure is quiet around our house without any babbling) but fully understand he is at a better spot where he is able to enjoy a totally different life style - where he is seizure/vomiting free and is able to run freely with my other relatives that are in heaven as well.
I am hoping for the thrift sale to be a success and we will be able to add the money to his scholarship account. It will however be a very sad day to see his items go - but comforting knowing that they will be put to good use by other little boys and girls.
Sunday, June 27, 2010
Saturday, June 19, 2010
Friday, June 18, 2010
Monday, June 14, 2010
However, I just got word that the monument place is working on his proof for his memory brick that will be placed at our local zoo- he will be the first one EVER to have a photo included. They were going to do an etching portrait ($425) - but asked if they could actually do a porcelain portrait ($300) instead http://www.everlifememorials.com/ceramic-pictures-s/22.htm (it would look something like this) (However they go through their own company) - they even guarantee the photos for life! We will be using the portrait that was taken professionally back in December - the one that was posted with his obituary.
Tuesday, June 8, 2010
Thursday, June 3, 2010
Friday, May 28, 2010
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
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
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.
Thursday, May 20, 2010
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
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
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
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!
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.
Wednesday, May 12, 2010
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
Monday, May 10, 2010
Sunday, May 9, 2010
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.
Saturday, May 8, 2010
Friday, May 7, 2010
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!!
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 knew 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
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
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
Friday, April 30, 2010
He is also having a second opinion EEG done at a children's hospital in MN next week - our last second opinion was when he was 2 months old and that hospital totally missed any of his seizures - that was when we sought out Rochester Mayo.
My husband is against this second opinion (his opinion is - it is what it is) - I myself have an open opinion and I am gladly interested in what this new doctor has to say about his development and EEG results.
So far the name brand Keppra has been working - knock on wood - but we have not seen any seizure activity since Sunday. Again knock on wood! He might be having a honeymoon period. This is when a new drug works for about 2 weeks and then stops.
Friday, April 23, 2010
I asked my husband - do you even know what your son's therapy schedule is? I don't think he even knows that we take our son to three different therapists to try to improve his development - he is totally clueless - I would be honored to have someone in the community help with his well needed therapy if they offered and they knew what they were doing - yet he turned her down -
Even though he turned her down for the therapy it still would have been nice to have met her to discuss what she has tried with her own children for therapy. I love connecting with other parents who can relate to us - however the lovely Hippo law doesn't allow us to find anyone - and support is really needed in order to stay strong.
Locally we have a group called the "gene pool" and it has been dying over the years since most of the children are entering adulthood -however, luckily this Sunday they will be meeting in hopes of rejuvenating the group. I am looking forward to meeting other parents in our community that can relate. So I am really looking forward to attending.
However since I will never meet up with the parent from the thrift sale again (unless she attends the gene pool meeting on Sunday) - I will have to continue to spread myself thin as I try to transport him to all of his therapy centers in two different areas in hopes he will continue to move forward with his development.
We have sadly had a set back for his seizures - today alone he has had over 5 seizures - so he will be having a 24 EEG in May to monitor any changes in his brain pattern.
I again simply say - Lord please allow our son the capabilities of living a life without these terrible seizures and allow him a miracle in living an independent life - allow him the right to learn how to communicate with others and remain strong as each day can be a struggle. Oh Lord please hear our prayers!
I am fearing he is loosing some skills - he has always bear weight and actually lifted his foot to walk while holding onto our fingers but lately he has been a little stinker and not wanting to bear weight or lift his feet - I just thought he was being defiant - I sure hope he isn't beginning to lose the skill due to the spams! Please pray!!
We did finally get the name brand Keppra as well - it wasn't the doctor that was slowing the process down it was the pharmacy - they never called to tell us it was ready to be picked up TWO days ago!
Wednesday, April 21, 2010
I thought every state paid for diapers once their special child turned 3 - but I have been told WI is different and doesn't pay for them until the child turns 4. So I guess we will have another year of buying diapers and depends!! Yippee for us!!
Sunday, April 18, 2010
Tuesday, April 13, 2010
Brextin's circulation - and our local doctor claims that it is normal among children who are non-mobile - I just can't believe that - yet I have no idea what type of doctor would work in this department - here are some photos of his feet -
I plan on attending a social gathering tonight to meet with other parents in our area that can relate to raising a child with extreme needs. The last time I planned on attending it was canceled.
Tomorrow will be his first official visit to Nature's Edge therapy center.
I am currently checking on another center about 45 miles away that will hopefully be able to help us teach him to better suck. Here is a video of him actually sucking on his fingers.
Sunday, April 11, 2010
Saturday, April 10, 2010
Some therapies that were mentioned was:
Working with a naturopath
Neurofeedback - it is a way to help your own body regulate the brain's electrical activity
ABR - advanced bio-mechanical rehabilitation
Neurological Reorganization - "Masking" or "Rebreathing" It allows more oxygen into the brain without directly supplying it like with HBOT.
Tomatis - It is listening therapy
Feldenkrais - engaging the child in a process that provides the brain with the conditions and information it needs in order to begin learning
VitalStim - is a new medical break through used in the treatment of swallowing disorders
Has anyone else used these types of therapies?
I just found a center near us that offers VitalStim and Feldenkrais - It would be awesome if Brextin would learn how to suck and swallow. Then we could possibly get rid of his g-tube.
We have talked about getting him tested to see if his body is short on certain supplements - but when I mentioned this to his doctor at Rochester he just told me - often the test is given so the companies can sell their supplements and they are not really looking out for what is best for the child. We do give him fish oils and MB12 shots.
Any ideas or suggestions -
Tuesday, April 6, 2010
I sure hope people are able to learn about our son's condition and visually see all of his accomplishments over the past years.
We have tried a ton of different therapies over three years -
occupational therapy, speech therapy, physical therapy, medek therapy, hyperbaric oxygen therapy, water therapy, music therapy, massage therapy, CranioSacral, and will soon be trying AIT therapy, and hippo therapy.
It is hard to believe that our little guy will be turning three next month. We will be having his transition meeting in a couple of weeks and I have called an advocacy agency in hopes of their support in helping me to fight for Brextin's needs as he heads to school in the Fall.
Thank you to all of those who read and follow our blog - we sure do appreciate it!
Friday, April 2, 2010
We have been noticing a different type of seizure lately - his face begins to get red botches (warning sign to us) then his body begins to twitch (watch his arms and legs) and often he throws up afterwards -
I changed our date for the new EEG - since they are interested in having us for about 3 to 5 days I decided to wait until school was out - so his EEG at the Children's Hospital in MN will be in June. His AIT therapy will be pushed forward another week - so he will receive that training the third and forth week in June.
Plus we were just notified of a center near us that will allow our son to ride a horse for FREE - amazing - unfortunately the owner is out of town this week so we will have to wait another week - but we checked out two other centers near us - one wanted $140 for 6 sessions (I signed up for this - which was before we were told about the free lessons) but I haven't heard if they accepted our registration (I am hoping we can cancel) and the other center near us asked for $300 for 10 sessions. I am so excited to try horse back riding for Brextin and the best thing is that the riding center is about 10 minutes away from our house and not 45 miles away!!
Monday, March 29, 2010
I had bumped into a wonderful gal the other day who mentioned that her special daughter sees a pediatric epileptic doctor at a children's hospital in MN (the doctor actually specializes in nothing but pediatric epilepsy) - and she very HIGHLY recommended a particular doctor - so I called today - to see if we could get an appointment for Brextin - and luckily we did (plus our insurance will cover the appointment and hopefully the procedures) - however I will need to miss another 2 days of work while he gets another EEG done. As I talked to them - they had indicated they usually keep the kids at least 2 - 5 days to get an accurate EEG reading - we have never had a EEG lasting longer than 48 hours.
I am hoping they suggest he receives a PET scan - which would allow us to locate his “seizure focus” to help conquer his epileptic seizures?
I emailed our Neuro doctor that we currently see - to see if he thought he would be a surgical candidate - however he responded with this . . . I do not think that Brextin is a surgical candidate because of his multifocal epileptiform discharges, but I will ask our senior pediatric epilepsy specialist.
We love our neurologist that we currently see at Rochester Mayo - but we have never had a second opinion - so we are now exploring that option.
He has been having about 2 to 3 seizures a day lately.
Sunday, March 28, 2010
While we were at church he was beginning to take a nap - and the pastor called up anybody who needed to be healed to come forward and so of course I took him up to the alter and once everyone clapped for praise - his eyes went right open, but nothing else happened - yet I was pretty sure something was going to occur - because he was in a deep sleep and now his eyes were wide open and sure enough - his face began to get red blotches all over it - and I saw the signs of a seizure coming on - so I rushed him to the back of the church to lay him on the floor and then he began to have a seizure - and luckily our friend Sam followed me to make sure everything was ok - because he ended up throwing up his breakfast all over himself and the floor - and luckily Sam found a towel near by that allowed us to catch some of it.
Praise be the Lord- please heal our son and allow a miracle to occur!! He just doesn't deserve to be put through this - he is such an adorable boy who deserves to be able to enjoy life just like you and me!
Thursday, March 25, 2010
If he does not have any means of moving by himself despite having had therapy for 2-3 years through B-3, this indicates that therapy is not necessarily helping him. This also indicates low therapy potential for significant change during a 8-12 week period (our summer program).
I responded to our birth to three coordinator - with thank you for passing me onto this other therapy center - however - I would rather work with individuals who see hope in our son's life - he has come a long way from where we began - and I believe there is potential - but I don't think therapy one time a week is enough - professional athletes do not become pros at their sport by practicing one hour a day once a week - it takes time and dedication - just like my son's life!
Would you not agree???
Sunday, March 21, 2010
Saturday, March 20, 2010
Luckily he hasn't been tired after any of the seizures that I have seen. They usually last around 30 seconds and then he continues doing what he was doing - whether it is eating, or playing with his chew toy - these past seizures haven't been making him tired at all.
I bumped into two wonderful gals yesterday in the waiting room while Brextin was getting his weekly massage - they were parents of children who are older who also have disabilities and they even passed along their contact information so we can continue to talk. They told me that even though the future might seem iffy - things will be ok - by taking each day by day. It is just amazing how therapeutic their talk was to me - it was priceless!
Thursday, March 18, 2010
While a ton of families are planning a family vacation for the summer months - I am planning to spend our family vacation money on therapy needed for my son since we only get 40 sessions combined for OT, ST, and PT. I have been seeking horse therapy for him. Once he turns three all horse therapy centers will take him. (most will begin him on a probation period - since he is so tiny they are unsure if they have a helmet to fit him) The prices that I have found have been around $300 to $400 for either 6 to 10 sessions. Plus since he will lose birth to three services over the summer we will need to pay for each therapy session out of pocket - (each therapy center at the Special Children Center usually costs a little over $100 per session)
http://www.trinity-ec.com/trinity_services/healing_with_horses.phtml , http://www.naturesedgetherapycenter.org/ , http://walkontherapeuticriding.org/
I certainly HOPE things will improve over the years so our oldest son is able to enjoy some vacations - it is unbelievable how much therapy cost and isn't covered under any type of insurance. The sad part is that there is no guarantee that the therapy will even advance my son's progress - we can only pray!~
Tuesday, March 16, 2010
This is a first for him - I sure hope they won't continue (usually his body just freezes until the seizure stops) - then as soon as I walked into the house my husband told me he had another one during his bath - but he didn't see convulsions - urgh!! I hate this!!! He has been seizure free for one week and now we are back to the unknown!!! I have notified our neuro to see if another EEG will be needed if he continues to have convulsions - hopefully I will hear back soon.
Wednesday, March 10, 2010
Sunday, March 7, 2010
11:00 Brextin had a seizure (he did throw up this time)
11:30 - my oldest son - yells "I'm hot"
12:00 Brextin has another seizure
1:00 Our dog had to go outside
1:30 Brextin had another seizure (never threw up) plus our oldest son had to go to the bathroom
2:00 Brayden wanted colder water to drink
2:30 Brextin had another seizure (never threw up)
4:00 Our oldest son asked to climb into my bed
5:00 Brextin had another seizure (never threw up)
8:00 Brextin had another seizure - (never threw up) decided it was time to get up and get our lovely day started :-)
8:30 My oldest son is still sleeping in our bed - and I am jealous - :-)
8:40 Brextin had another seizure while being fed
I do hope that our oldest son is feeling better today - it didn't appear as if he had a fever this morning which is a good thing - I have decided to increase Brextin's seizure meds to 3.6 of the generic Keppra.