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.
Friday, May 28, 2010
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."
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 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)
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!
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.
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!
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
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!
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
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
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!!
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 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
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!!!
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
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 failed his hearing test - an ABR has been scheduled
Brextin seems to like real high frequencies so I am a little concerned that his hearing might not be the greatest - so we went to the hospital yesterday for a hearing test- we sat in a booth and the doctor did a variety of tests to see if he would respond as he heard different sounds at a variety of locations in a small sound proof room - he scored around a 40-50% on his responses. So we are now going to be scheduled for a stacked ABR test that will test his hearing capabilities as he is asleep or is sedated by attaching electrodes to certain areas on his head. We have tried to do something similar at Mayo but they keep putting us off so we will be doing the test locally at a hospital in Chippewa Falls.
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.
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
Thrift sale was a huge success!
We had a wonderful turn out for our thrift sale and have raised a nice amount to help pay for some therapy. There was even a nice lady that stopped by and only talked with my husband - she offered to work with Brextin free of charge for therapy - and can you believe it my loving husband said no thanks - apparently she has three special needs children of her own - god bless her sole that she would be willing to open her heart to one more child.
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 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 concerned that the spasms have returned!
I am concerned that the spasms have returned - we have never seen spasms with our son - the brain pattern just has been observed while on a EEG - however this time I believe we are physically seeing the spasms. I can be holding him and he will be grabbing at my hair and all of a sudden he will let go and both arms will go straight up in the air and then come back down - it is bizarre behavior. Our daycare provide has said she has seen many of these - and I experienced my first one the other day. I have a call into our neuro at Mayo - and so I am now waiting to hear a response back. (waiting for a returned phone call can be the hardest thing!)
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!
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
School - IEP - and diapers
We had his transition meeting yesterday and I think it went pretty well - nothing is finalized yet - but I think we will try to send him 3 days a week for about 2 hours a day. He will also receive OT, ST, and PT while at school. We plan on also getting therapy at Nature's Edge as well if we get approved with medical assistance.
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!!
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!!
Why does it take so LONG for doctors to reply!
It would be two weeks this Saturday that Brextin has had a seizure - however today he has had many - I have asked our neuro at Rochester Mayo to put him on the name brand drug instead of the generic brand of Keppra - but it is taking him forever to get it prescribed (first it was our insurance that was slowing the process down and now we are just waiting for our doctor to write a letter in support of trying the name brand drug) - it will be two weeks very soon - he is a well known doctor so he is out of the state or even country quite often - so I usually have to wait and wait until I hear back from him - I hate the waiting - my son is hurting because of the wait!!
Sunday, April 18, 2010
Getting ready for a block thrift sale - a sad moment for me
As I am beginning to mark items for the sale - I can not help but hold back the tears as I am marking toys that his once older brother use to play with - in hopes that our youngest son would be able to play with - yet that will not be the case. It will be very sad to see these once playful toys go out of my house knowing my son who will be 3 next month will never be able to play with them. The only thing that will be positive out of this sale is that the money raised will be able to be used for well needed therapy or equipment for our son!
Tuesday, April 13, 2010
Purple toes
We are going to try name brand Keppra instead of the generic
We are going to try the name brand version of Keppra to see if it will make a difference other than the generic version - since he still continues to have two to three seizures a day - Hopefully the prescription will be called in today.
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.
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
They're back!!! Ugly Seizures!
Brextin has been having about two to three seizures a day (plus throwing up after some of them) - we have increased his generic Keppra to 5ml twice a day. I have an email into his neuro at Rochester Mayo to see what the next step will be. Some parents have said that once the child received name brand Keppra and not the generic it made a huge difference. Who knows - just waiting to hear back from his doctor.
Saturday, April 10, 2010
Spread the word - end the Word!! www.r-word.org
One of my high school students came to school with a shirt that read . . . stop the r-word and I loved it and commended her for wearing it in support of all children who have challenges. (she had gotten it through her girl scout troop) The slogan is a campaign through the Special Olympics and the Best Buddies organization. http://www.r-word.org/ (here is a link to their home page) - I truly loved shirt so well that I bought one for myself at . . . http://bestbuddies.org/shop/storefront/ scroll down until you see other words - then click on Woman's and scroll down till you see the shirt (it was only $8.00 with about $5.00 for shipping and handling) On the back - it reads . . . Acceptance, Passion, Humanity, Unity, Be a fan of RESPECT - http://www.r-word.org/ The shirt is made of a very thin material - however I love the saying and the meaning behind the shirt and their slogan -
You can purchase different shirts at their main webpage as well but they were more expensive than going through the best buddies website.
Help spread the word - end the word!!
Help eliminate the use of the R word in everyday speech!
Alternative therapies??
A topic that has been discussed on one of the groups that I belong to via Yahoo - has been on alternative therapies. I still strive each and every day in hopes of finding the miracle therapy that will help advance our son's development - however I am beginning to think - maybe time is the only cure - but how much time - time to me is standing still - to know that my son will be turning 3 next month and still can not crawl, communicate, drink liquids via mouth, stand, or even reach for me is breaking my hopes down.
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 -
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
We have had over 10,000 hits yahoo!!
I can not believe our son's blog has had over 10,000 hits - I love it!!!
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!
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
New type of seizures??
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
We won - we won we won!!!
We won a promotion through a local radio station. You had to submit in 95 words or less - why we deserved a "Get Away" I had a hard time limiting our story to 95 words. The "Get Away" includes two round trip tickets to Chicago - and a make over from a local beauty/tanning salon "The Tannery". I am so thankful for this trip - I am hoping it will rejuvenate our lives. The radio station will be contacting me soon - to tell me more about the winning package.
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.
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
Back to seizures and throwing up :-(
Once we increased his seizure meds - last week I thought we had conquered them - however - our wonderful daycare provider thought he had a seizure on Thursday - and threw up as a result of the seizure - and then today while at church - the same thing occurred.
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!
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
Therapy and so many different philosophies
My birth to three coordinator - asked me to check with another therapy center for additional PT - therapy over the summer - since he will only receive services about one to two times a month through the school district (I will pay out of pocket) - and so I did and I could not believe this is what the employee told me through an email - when I asked if they offered PT to help further my son's development . . .
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???
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???
Epilepsy Awareness day this Friday!!
Please support our son and the many others who are struggling with this disorder - wear purple to show awareness!!
Sunday, March 21, 2010
We had an awesome day - not ONE seizure today!!
What a difference an increase of meds can do - Brextin only had two seizures yesterday and NONE today - hallelujah!!!! He was all smiles and full of life today. I pray for more awesome days and never to return to our horrible day that he had on Friday.
Saturday, March 20, 2010
Ball pit!!!
Grandma was going to take big brother to Hardee's to play in their ball pit - so I created one for little Brextin - he enjoyed watching basketball with daddy.
Recent photos!
Hopefully this won't happen on a real horse :-)!
Grandpa and Brextin - ahh texture!!
Moments with daddy!
Grandpa and Brextin - ahh texture!!
Moments with daddy!One, three, six, nine, thirteen seizures in one day - Lord help!
He had one seizure for daddy yesterday morning, four for our daycare provider, four for me after I picked him up from daycare and then four more while he slept (that we woke up to - who knows how many we missed). We have no idea why we are seeing an increase. We had been seizure free for one week on 3.8 of generic Keppra and as of this morning we increased his amount to 4.5 in hopes it will help. It usually takes about two days before the increased amount actually takes into effect.
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!
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
Seizures still not controled . . . & horse therapy
We have now increased his generic Keppra to 4.0 ml two times a day. He had three seizures yesterday - one with convulsions.
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!~
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
Another step backwards
I had a late day at work - for a late in-service and so I called our daycare provider on my way home to see how things went today - and she said - I wish I could tell you good news - however - he had a seizure today that lasted about 2 minutes but this one was different - it appeared as if he was having convulsions while the seizure was occurring. His hands and feet were moving.
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.
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
Poof chair
This is a picture of a chair we have - that will be wonderful for Brextin when he gets bigger - it is called a "poof chair" it is like a bean bag chair but is filled with recycle sofa foam - and if it loses its shape all you do is "poof" it up - I plan on placing a picture of my oldest son sitting in it soon - so other parents will be able to see how big it actually is - I think ours is a 3 foot chair. The chair can be shaped to fit around the child.
Updated videos
Here are some videos (even though they show up black - they will play if you press the arrow) - one will be a current video showing him having one of his recent seizures, one is of him sorta giggling, one is of him babbling with his hands, and one is of him bouncing on his knees. Currently we have his seizures under control with generic Keppra (3.8 ml twice a day)
Sunday, March 7, 2010
More and more seizures!!
I had a terrible night last night - Andy has been away for the weekend for a racquetball tournament - so I have had the boys to myself - and I was blessed to have our daycare provider take them Friday night because last night was horrible. Here is how it went:
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.
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.
Saturday, March 6, 2010
Check out these great books for vision!
Brextin has been labeled legally blind - and I ran across these books from another one of the blogs that I follow - maybe he would be able to see them since they show movement and are in black and white - one I think is in color (I bought mine used - saved a ton) . . . hmmm -
http://www.amazon.com/Waddle-Scanimation-Picture-Book-Books/dp/0761151125/ref=pd_rhf_p_t_2 and http://www.amazon.com/Gallop-Scanimation-Picture-Book-Books/dp/0761147632/ref=pd_sim_b_2
Watch the video on Amazon.
Product Description
There's never before been a book like Gallop! Employing a patented new technology called Scanimation, each page is a marvel that brings animals, along with one shining star, to life with art that literally moves. It's impossible not to flip the page, and flip it again, and again, and again.
A first book of motion for kids, it shows a horse in full gallop and a turtle swimming up the page. A dog runs, a cat springs, an eagle soars, and a butterfly flutters. Created by Rufus Butler Seder, an inventor, artist, and filmmaker fascinated by antique optical toys, Scanimation is a state-of-the-art six-phase animation process that combines the "persistence of vision" principle with a striped acetate overlay to give the illusion of movement. It harkens back to the old magical days of the kinetoscope, and the effect is astonishing, like a Muybridge photo series springing into action—or, in terms kids can relate to, like a video without a screen. Complementing the art is a delightful rhyming text full of simple questions and fun, nonsense replies: Can you gallop like a horse? giddyup-a-loo! Can you strut like a rooster? cock-a-doodle-doo!
http://www.amazon.com/Waddle-Scanimation-Picture-Book-Books/dp/0761151125/ref=pd_rhf_p_t_2 and http://www.amazon.com/Gallop-Scanimation-Picture-Book-Books/dp/0761147632/ref=pd_sim_b_2
Watch the video on Amazon.
Product Description
There's never before been a book like Gallop! Employing a patented new technology called Scanimation, each page is a marvel that brings animals, along with one shining star, to life with art that literally moves. It's impossible not to flip the page, and flip it again, and again, and again.
A first book of motion for kids, it shows a horse in full gallop and a turtle swimming up the page. A dog runs, a cat springs, an eagle soars, and a butterfly flutters. Created by Rufus Butler Seder, an inventor, artist, and filmmaker fascinated by antique optical toys, Scanimation is a state-of-the-art six-phase animation process that combines the "persistence of vision" principle with a striped acetate overlay to give the illusion of movement. It harkens back to the old magical days of the kinetoscope, and the effect is astonishing, like a Muybridge photo series springing into action—or, in terms kids can relate to, like a video without a screen. Complementing the art is a delightful rhyming text full of simple questions and fun, nonsense replies: Can you gallop like a horse? giddyup-a-loo! Can you strut like a rooster? cock-a-doodle-doo!
I am now on facebook
I had some time to explore facebook today - so I just set up an account - I still have no idea what I am doing - but I am exploring and downloading a couple of photos.
I got out again!
I have been up and down with emotions - at certain times I am fine raising a child with extreme needs and then other days - I just break down and wonder if I can handle it and why why why us - and just break down in a good cry.
I won tickets the other day to a play, Guys and Dolls and offered them to our WONDERFUL daycare provider and she said that I should go - and so I took her up on the offer - she watched both of my children over night while a co-worker and myself went to dinner and the show - we even went for a drink afterwards- boy did I need this - I just felt totally rejuvenated -
The down side is that I have troubles finding people to do things with - most people get to do things with their co-workers (as friends) and well since I teach in a village - our staff members live all over and so it is tough to connect with anyone. I still chum around with my best friend since 8th grade- however she too - has a busy life- 3 kids, works full-time, plus goes to nursing school. My mom is wonderful also to do things with - but this week my dad is on vacation so they left for the week -plus she is still recovering from knee surgery that occurred back in October and now she will be having the second knee done this month. We use to have a ladies night out in our neighborhood - but that fizzled - I only have one sister and she lives 30 miles away.
At times I wish there was a friend finding service - instead of just dating services - I don't need a dating service since I am married - but would like to know how does one meet new friends - when you are in the upper 30's - I can't get to the gym to meet anyone there- I am not a bar person - I just know that I need to get out more to rejuvenate my soul without kids - and I am thinking that will be a goal this year- to get out at least once per month and totally enjoy myself - I think it was easier to type than to full-fill. Wish me luck!
A quick update on seizures - we have now upped his generic Keppra to 3.2 twice a day - he has been having about 3 seizures a day since weaning him off of Vigabitran - the bad thing about this is that he has begun to throw up after each seizures - which typically wears the little guy out - on a good note - he has been full of energy and I even heard him laugh twice - which is a heartwarming - I am going to try to film it and place it on this blog -
I won tickets the other day to a play, Guys and Dolls and offered them to our WONDERFUL daycare provider and she said that I should go - and so I took her up on the offer - she watched both of my children over night while a co-worker and myself went to dinner and the show - we even went for a drink afterwards- boy did I need this - I just felt totally rejuvenated -
The down side is that I have troubles finding people to do things with - most people get to do things with their co-workers (as friends) and well since I teach in a village - our staff members live all over and so it is tough to connect with anyone. I still chum around with my best friend since 8th grade- however she too - has a busy life- 3 kids, works full-time, plus goes to nursing school. My mom is wonderful also to do things with - but this week my dad is on vacation so they left for the week -plus she is still recovering from knee surgery that occurred back in October and now she will be having the second knee done this month. We use to have a ladies night out in our neighborhood - but that fizzled - I only have one sister and she lives 30 miles away.
At times I wish there was a friend finding service - instead of just dating services - I don't need a dating service since I am married - but would like to know how does one meet new friends - when you are in the upper 30's - I can't get to the gym to meet anyone there- I am not a bar person - I just know that I need to get out more to rejuvenate my soul without kids - and I am thinking that will be a goal this year- to get out at least once per month and totally enjoy myself - I think it was easier to type than to full-fill. Wish me luck!
A quick update on seizures - we have now upped his generic Keppra to 3.2 twice a day - he has been having about 3 seizures a day since weaning him off of Vigabitran - the bad thing about this is that he has begun to throw up after each seizures - which typically wears the little guy out - on a good note - he has been full of energy and I even heard him laugh twice - which is a heartwarming - I am going to try to film it and place it on this blog -
Tuesday, March 2, 2010
So far so good - with the wean of Vigabitran!!
We ended Vigabitran 100% as of Saturday and currently no Seizures - we continue to pray for further success. (I sure hope I don't jinx him) He does however have a terrible terrible cold - every time he coughs - it sounds as if he is going to throw up - so sleep has been limited for all of us - we finally took him to the doctor in hopes something could be done - and it appears as if he has an ear infection - even with tubes in his ears - so we will now add ear drops to our daily routine.
Sunday, February 28, 2010
Looking into an adaptive bike for Brextin's 3rd birthday
We have two trikes that allow us to push him - but they are not intended for special needs children so I need to figure out a way to adapt them. I am looking into pedal adaptive that would allow us to Velcro his feet to - so when we push him - his legs would actually spin - but at this website http://www.flaghouse.com/Adapted-Tricycle-Accessory-Foot-Pedal-Attachments-item-5875 they want $78 - are you NUTS!! Why is it that everything that is needed for our children costs so much money. I am seeking out my relatives to see if anyone can be creative - and make them for us cheaper -
Another website that looked promising is http://www.amtrykestore.org/ They might even donate a bike to your special needs child if a therapist/doctor refers you and there is a financial need. They offer different accessories that might be helpful to adapt one of his bikes to fit his needs.
I also went to amazon.com and found these bikes as a possibility:
http://www.amazon.com/gp/product/B002OHD2PC/ref=s9_simh_gw_p200_t1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846 (I really like this one)
http://www.amazon.com/gp/product/B002MOXRTI/ref=s9_simh_gw_p200_t2?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846
http://www.amazon.com/gp/product/B002ZZ1T0S/ref=s9_simh_gw_p200_t3?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846
http://www.amazon.com/gp/product/B001E6OUZK/ref=s9_simh_gw_p21_t1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-4&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470939031&pf_rd_i=507846
http://www.amazon.com/Little-Tikes-615221-Smart-Trike/dp/B001UE85DO/ref=sr_1_1?ie=UTF8&s=toys-and-games&qid=1267372545&sr=8-1 (I really like this one)
I allows find it tough to find gifts for our special little guy - but I think this would make a wonderful third birthday gift - so when we go on walks he won't have to be in a stroller or his wheelchair. Can anyone else recommend any other suggestions?
Another website that looked promising is http://www.amtrykestore.org/ They might even donate a bike to your special needs child if a therapist/doctor refers you and there is a financial need. They offer different accessories that might be helpful to adapt one of his bikes to fit his needs.
I also went to amazon.com and found these bikes as a possibility:
http://www.amazon.com/gp/product/B002OHD2PC/ref=s9_simh_gw_p200_t1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846 (I really like this one)
http://www.amazon.com/gp/product/B002MOXRTI/ref=s9_simh_gw_p200_t2?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846
http://www.amazon.com/gp/product/B002ZZ1T0S/ref=s9_simh_gw_p200_t3?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846
http://www.amazon.com/gp/product/B001E6OUZK/ref=s9_simh_gw_p21_t1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-4&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470939031&pf_rd_i=507846
http://www.amazon.com/Little-Tikes-615221-Smart-Trike/dp/B001UE85DO/ref=sr_1_1?ie=UTF8&s=toys-and-games&qid=1267372545&sr=8-1 (I really like this one)
I allows find it tough to find gifts for our special little guy - but I think this would make a wonderful third birthday gift - so when we go on walks he won't have to be in a stroller or his wheelchair. Can anyone else recommend any other suggestions?
Saturday, February 27, 2010
Speech tools? Has anyone used these?
I am always looking for tools to help enforce better sounds for Brextin - and ran across these tools - I plan on asking our birth to three speech therapist - but am wondering if anyone has used these?
A tongue lateralization:
http://www.dysphagiaplus.com/talk-tools®-tongue-lateralizationelevation-tool-p-596.html?osCsid=yzrixzbjonpdxnmu
Tongue lifter:
http://www.dysphagiaplus.com/tongue-lifter-p-409.html?osCsid=yzrixzbjonpdxnmu
Tools that help with sensory-motor stimulation at the cheeks, soft palate, and pharynx.
http://www.dysphagiaplus.com/oralight®-oral-motor-exercise-system-p-206.html?osCsid=yzrixzbjonpdxnmu
Jaw exerciser:
http://www.dysphagiaplus.com/talk-tools®-exerciser-p-600.html?osCsid=yzrixzbjonpdxnmu
Lip gym:
http://www.dysphagiaplus.com/the-lip-gym-p-242.html?osCsid=yzrixzbjonpdxnmu
A tongue lateralization:
http://www.dysphagiaplus.com/talk-tools®-tongue-lateralizationelevation-tool-p-596.html?osCsid=yzrixzbjonpdxnmu
Tongue lifter:
http://www.dysphagiaplus.com/tongue-lifter-p-409.html?osCsid=yzrixzbjonpdxnmu
Tools that help with sensory-motor stimulation at the cheeks, soft palate, and pharynx.
http://www.dysphagiaplus.com/oralight®-oral-motor-exercise-system-p-206.html?osCsid=yzrixzbjonpdxnmu
Jaw exerciser:
http://www.dysphagiaplus.com/talk-tools®-exerciser-p-600.html?osCsid=yzrixzbjonpdxnmu
Lip gym:
http://www.dysphagiaplus.com/the-lip-gym-p-242.html?osCsid=yzrixzbjonpdxnmu
First day of no Vigabitran - send us a ton of prayers!
Today was the first day of no Vigabitran - currently no seizures - yet we usually don't experience any seizure changes until day 4 or 5 into the med change. He is still taking 3ml of generic Keppra in the morning and at night. The only big thing we have experienced are the blow out diapers - he has massive blow outs - we are uncertain if it is due to the meds or if it is because he has a terrible cold. Whenever he gets a cold - he gets them bad - each time he coughs - it is as if he is going to throw up - at times he does throw up and other times he doesn't- his eyes only water. That is the biggest thing that I hate - is when his left eye begins to shed a tear. It seems to be quite often - yet I have not idea why the tear comes down only one eye. I just hope he isn't hurting inside.
A miracle did occur today - I got out and went to the spa - I had a 30 minute massage, sat in a chaise lounge, listened to their waterfall, drank a glass of water, read some magazines, and then stepped into their steam shower and then headed back to reality - but boy was it 2 hours of being in heaven!!
A miracle did occur today - I got out and went to the spa - I had a 30 minute massage, sat in a chaise lounge, listened to their waterfall, drank a glass of water, read some magazines, and then stepped into their steam shower and then headed back to reality - but boy was it 2 hours of being in heaven!!
Thursday, February 25, 2010
So far so good - by increasing generic Keppra
Once we increased his generic Keppra to 3ml twice a day - we haven't seen any seizures - however he is very very sleepy. He actually slept through the night - which is a miracle in itself- he usually wakes up and begins to babble a number of times throughout the night.
Tuesday, February 23, 2010
Too many seizures to count --uurgh!!
We are now down to 250mg of Vigabitran (he was on 1000mg)- we began this dosage as of Saturday and the poor guy has been having too many seizures to keep track of. (Yesterday he had over 5 - but today our daycare provider told us she lost track - since he kept having more and more) We have been giving 2.5ml of generic Keppra and just upped it to 3ml in hopes of his seizures being controlled.
I just hate seeing him have these seizures over and over - I sure hope the seizures can be controlled by using only generic Keppra.
I just hate seeing him have these seizures over and over - I sure hope the seizures can be controlled by using only generic Keppra.
Monday, February 22, 2010
Today is the tour . . .
We will be touring the school in which Brextin might be attending today - however I was thrown for a loop the other day - when I heard that the district might think he is to medically fragile and he might get home treatment instead - Plus they are unsure if he will actually be attending the school in which I will be touring today - he might be going to a different school instead. (So I am hoping that today is not a waste of my time)
We haven't had his IEP meeting yet - this is where we will discuss his schooling needs - I just get frustrated not knowing where he will be going to school or what he will be taught. One minute I am ready for him to go and then other days I still can not believe my 3 year old will be going to school (since he only functions at a 6 month old).
We haven't had his IEP meeting yet - this is where we will discuss his schooling needs - I just get frustrated not knowing where he will be going to school or what he will be taught. One minute I am ready for him to go and then other days I still can not believe my 3 year old will be going to school (since he only functions at a 6 month old).
Saturday, February 20, 2010
I broke out!!
I broke out!! I got out of the house without the boys!!
I thought to myself where will I go - then it occurred to me I better head to the nearest bookstore that offers free Wi-Fi so I could work on a graduate class that I am currently enrolled in. (Word 2007) I have to take two classes within the next couple of years in order to renew my teachers license.
If I have sometime I would like to explore Facebook - I find it to be quite funny - I teach technology classes - yet have never been on Facebook - I just haven't had the time. I find it tough just to find the time to update my son's blog or check my personal emails.
I thought to myself where will I go - then it occurred to me I better head to the nearest bookstore that offers free Wi-Fi so I could work on a graduate class that I am currently enrolled in. (Word 2007) I have to take two classes within the next couple of years in order to renew my teachers license.
If I have sometime I would like to explore Facebook - I find it to be quite funny - I teach technology classes - yet have never been on Facebook - I just haven't had the time. I find it tough just to find the time to update my son's blog or check my personal emails.
Winter break
We just began our Winter break - we only get a Friday and a Monday off - but I am trying to make the best of it - we went to the eye doctor yesterday and he highly suggested we go back to having Brextin wear his glasses (we have another eye doctor who is against him wearing them) - this doctor really thinks it will help him in the long run - and said he was pleased with how he responded to some of his tests- and thinks there was improvement - After the appointment I took my oldest along with my mother to ChuckE Cheese's - he had a blast and I must say so did I- some of the games were pretty fun. We use to have a ChuckE Cheese here locally about 15 years ago - but it went out of business so we had to travel 80 miles to locate the nearest one.
Then when we got back my mom offered to keep our oldest for a sleep over - so we had the night alone with Brextin - we watched two movies and some of the Olympics and were able to sleep in a little.
Then my husband escaped to the gym for his 4 hour "away" time - still waiting for mine - which never comes - however while he was gone - I re-arranged Brextin's bedroom and wanted to make more room for our exercise mats that we keep downstairs - I am hoping to do more therapy upstairs - and I thought if I moved up some of his mats I would be encouraged to do so. Plus I thought his walkers would move more smoothly on the mats rather than the carpet. We are hoping that this will be the year that he will begin to walk - our fingers are crossed and our prayers have been said.
Today is the day that we dropped his Vigabritran down to 250mg - he use to be on 1000mg - and currently he has been handling the 500mg just fine - so we pray that the wean continues to do well.
Earlier this week - we had a scare - we went in to wake Brextin up in the morning - and found him laying in a pool of blood by his head- we found out he bit his tongue - it was quite severed 
- right in the middle - the strange thing was that he wasn't in any pain and it didn't bother him - I still am amazed as to how it happened and why he wasn't in pain.
- right in the middle - the strange thing was that he wasn't in any pain and it didn't bother him - I still am amazed as to how it happened and why he wasn't in pain.Tuesday, February 16, 2010
We all are doing much better!
We are all doing much better - and luckily big brother never got sick -:-) which was a bonus.
We will be on a Winter break this week and as always it will be filled with appointments for Brextin. We will be visiting an eye doctor in Hudson and our family will be receiving a tour at a school in which Brextin might be attending this September.
We will be on a Winter break this week and as always it will be filled with appointments for Brextin. We will be visiting an eye doctor in Hudson and our family will be receiving a tour at a school in which Brextin might be attending this September.
Sunday, February 14, 2010
I got what he had - and it isn't ANY fun!!
My husband predicted that I would get the bug on Saturday - and wouldn't you know - at 2 am - I was throwing my brains up - as it was leaking from the other end - I feel as if a bus has just hit me and is laying on top of me. I have been drinking a ton of juices and even Brextin's pedelite drink - it isn't as bad as I thought it would be - I am mixing it at times with juice. I am afraid to eat anything yet - but maybe today I will be adventurous.
Brextin is still not 100% well - but is doing much better - he has been having about one messy diaper a day and been throwing up about twice a day. He is quite tired as I am as well. We continue to pray that big brother doesn't get this terrible illness - it takes you down for the count. All throughout this illness we haven't seen an increase in seizures which is a plus - he did have one yesterday - but we did decide to continue his wean of Vigabitran - so currently he will be on 500mg - lately he has been on 750mg.
Brextin is still not 100% well - but is doing much better - he has been having about one messy diaper a day and been throwing up about twice a day. He is quite tired as I am as well. We continue to pray that big brother doesn't get this terrible illness - it takes you down for the count. All throughout this illness we haven't seen an increase in seizures which is a plus - he did have one yesterday - but we did decide to continue his wean of Vigabitran - so currently he will be on 500mg - lately he has been on 750mg.
Friday, February 12, 2010
Thursday, February 11, 2010
He is feeling better but we are still at the hospital
I think they want to be certain - so we are staying another night. He is receiving fluids in two ways. One way is by an IV and the other one is a drip of electrolytes via his g-tube by a pump - I am hoping to begin purred foods tomorrow morning by mouth.
Our hospital stay has had its ups and downs - on the night we arrived the admitting nurse was asking me to confirm his diagnoses. He first said epilepsy - and I said yes - then he said microcephaly - and I said yes - then he said mental retardation - I lost it - and I mean I LOST IT - tears just rolled down my cheeks! In our almost 3 year adventure with our son - he has never been referred to being this ugly word - and I quickly voiced my comments to this young nurse - I could not believe he just said that ugly word to me - he then stated he was only reading what was stated in his medical charts - I gave him a quick lesson as to what other words that could have been said in place of that word - such as developmental delays, challenged, etc.
The odd thing is - just before I went to the hospital I read an article in our local newspaper health section that stated this the medical dictionary is changing - . . .WASHINGTON (AP) -- Don't say "mental retardation" -- the new term is "intellectual disability." I was going to clip the article and send it to the ER nurse. I fully understand that my son does have his challenges ahead of him - however I never want that word associated with him. Here is a link to the article http://www.washingtontimes.com/news/2010/feb/10/changes-proposed-diagnosing-mental-disorders/
One of the good things that has come out of this visit - is that we were visited by a variety of different staff members who remember Brextin when he was here in the past (when he was around 9 months old) and they were interested in being updated in his condition - so we were blessed by some old visitors.
Our hospital stay has had its ups and downs - on the night we arrived the admitting nurse was asking me to confirm his diagnoses. He first said epilepsy - and I said yes - then he said microcephaly - and I said yes - then he said mental retardation - I lost it - and I mean I LOST IT - tears just rolled down my cheeks! In our almost 3 year adventure with our son - he has never been referred to being this ugly word - and I quickly voiced my comments to this young nurse - I could not believe he just said that ugly word to me - he then stated he was only reading what was stated in his medical charts - I gave him a quick lesson as to what other words that could have been said in place of that word - such as developmental delays, challenged, etc.
The odd thing is - just before I went to the hospital I read an article in our local newspaper health section that stated this the medical dictionary is changing - . . .WASHINGTON (AP) -- Don't say "mental retardation" -- the new term is "intellectual disability." I was going to clip the article and send it to the ER nurse. I fully understand that my son does have his challenges ahead of him - however I never want that word associated with him. Here is a link to the article http://www.washingtontimes.com/news/2010/feb/10/changes-proposed-diagnosing-mental-disorders/
One of the good things that has come out of this visit - is that we were visited by a variety of different staff members who remember Brextin when he was here in the past (when he was around 9 months old) and they were interested in being updated in his condition - so we were blessed by some old visitors.
We are still at the hospital -
We went to the ER last night around 10 pm and got moved up to a room around 4:00 am - and it is currently 7:00 am - I might have slept for about 1 hour. I am exhausted - I had to make sure I was awake around 6:00 am to call into work and to type up lesson plans for the sub. Plus since I didn't grab my phone charger - I am without a phone since it died - it just bothers me - to know how much we rely on technology and once it is missing - the world seems to come to a halt.
I was unable to log into the computer in the family waiting room so I am currently using a nurse's computer - and am glad that I am able to update his status.
They have been taking blood work and said his potassium is on the low side so they have started an IV - his vomiting has stopped but it is coming out the other end - and they are total blowouts - and since I am alone - I think I stopped counting the dirty diapers around number 8.
I plan on checking to see how things are at my home - I am hoping my husband is feeling better as well - and I sure hope our oldest as well as myself do not get this bug.
I was unable to log into the computer in the family waiting room so I am currently using a nurse's computer - and am glad that I am able to update his status.
They have been taking blood work and said his potassium is on the low side so they have started an IV - his vomiting has stopped but it is coming out the other end - and they are total blowouts - and since I am alone - I think I stopped counting the dirty diapers around number 8.
I plan on checking to see how things are at my home - I am hoping my husband is feeling better as well - and I sure hope our oldest as well as myself do not get this bug.
Wednesday, February 10, 2010
Brextin's stomach (for Dr. Lisa)
Here are pictures showing how big Brextin's stomach is - the video located below was - taken to see if he was in pain while pushing on it - to see if there would be some type of infection. We are on the way to the hospital - just to be on the safe side.
Brextin and Daddy are down with the flu - YUCK!
The good news is that we haven't seen any seizures since Saturday - which is fantastic - the bad news is that he is unable to keep any food down today - gratefully he has the G-tube which allows us to flush his system with fluids at least. His daddy is down for the count as well - this doesn't happen to often (he thinks he is invisible) - but he is out just like Brextin.
I even canceled his therapy appointment tomorrow - I am hoping to take my oldest to Chaos Water park tomorrow - since they have a promotion in the month of Feb - that every Thursday the park is FREE - usually it costs $20 per person if the child is over 3 years of age - so we are taking advantage of the promotional - that is - if we both remain healthy.
If he remains seizure free and gets feeling better - we will decrease his Vigabitran again this Saturday. We put the wean on hold - since he was beginning to have to many seizures. He is taking 250mg in the am and 500mg at night.
I even canceled his therapy appointment tomorrow - I am hoping to take my oldest to Chaos Water park tomorrow - since they have a promotion in the month of Feb - that every Thursday the park is FREE - usually it costs $20 per person if the child is over 3 years of age - so we are taking advantage of the promotional - that is - if we both remain healthy.
If he remains seizure free and gets feeling better - we will decrease his Vigabitran again this Saturday. We put the wean on hold - since he was beginning to have to many seizures. He is taking 250mg in the am and 500mg at night.
Saturday, February 6, 2010
Onle one seizure today :-)
Brextin just came home and currently he has only had one seizure this morning - lasting about 20 seconds - he is currently taking 3ml of generic Keppra and will drop down to 2ml tomorrow and we will not decrease Vigabitran until we have his seizures under controlled. It sure is nice to have him back - I just wish the hospital would take the time to remove the glue from his hair before he was discharged. It seems to take forever to remove- they say you can use finger nail polish remover - but I don't really like to put that stuff so close to his brain.
Brextin's long road trip to his progress. . .
I enjoyed the time alone - however it also gives me time for my brain to wonder - which at times isn't good. I begin to think of what the future does and doesn't hold for our son. However I also had time to ponder the road that he has already traveled.
I remember when he was a baby and he would lay on his back - and just lay there- I would put a toy in front of him and he wouldn't even grab at it - I remember getting very frustrated and yelling - just grab the "#%&^*" toy - and luckily today he will in fact grab a toy - as long as it is in front of him - he still is unable to grab or reach for a toy that is out of his reach - eye site might be the reason.
I then think of his sitting ability- I remember placing him in the sitting position - when he was a baby - and he would just lean forward and then roll to the side (like a limp noodle) - I again began to get frustrated - and asking - why are you unable to sit - just sit up - it isn't that hard - but it was a hard task for him - and then just one day - he began to sit - I think this occurred when he was around 1 years of age.
I then think about rolling over - we would lay him on his belly -with his face laying towards the ground - and I would say - why don't you roll over - who would want to be in that position - it took him a long time to get the upper arm strength - to allow him to push himself off of his belly. He is now able to roll over from belly to back - but still not the other direction. I am uncertain at what age this occurred at. (I never updated his baby book with his advancements - it would often get me depressed knowing how off schedule he was to the "typical" child.)
I then think of him getting his belly off of the floor into 4 point. I think he developed this skill while doing his first oxygen dives - he was around 2 years old. He would go up and then go right back down- and currently at the age of 2 3/4 - he stays up for quite sometime - still not crawling - but the strength is there. (he has begun to move one knee an inch forward which is a huge step)
I then think of him taking steps - he still isn't doing this alone - but will do it if you hold onto his middle half or his hands. I think this also developed last summer (when he was around 2) - around the same time when we were doing his first 40 oxygen dives and MEDEK therapy in NJ - I still can not get these words out of my mind - which was told to us via an on-call neuro doctor when Brextin was only 4 months old - "your son's brain waves are so slow that he will not walk or talk" When I see him lift his foot and move it forward - gives me hope that he will walk - it just is unknown as to when.
I then think of him making sounds. He has always been a chatty child - however we did lose some of that along with his fun giggle while he was first dx with Infantile Spasms. (this is the only regression we saw - along with eating by mouth) He still is unable to talk - but is beginning to make a couple new sounds. We still have not gotten his giggle back - but he is beginning to smile a lot more than usual (This started once we weaned him off of topamax)
I then think of standing. He still is unable to do this unassisted - but he is moving forward. When he was around 2 1/2 he began to stand up while leaning up against a couch. However he will tip right over if you were not near him (he still doesn't have the relax to put his arms out to catch himself from falling) - However today he is beginning to stand while holding onto a toy walker or even his crib - we do have to place him in this position - but he stays for about 5 to 10 minutes he is even daring and wanting to bounce while standing and holding on.
Then I think of his vomiting issue - this is the biggest improvement - our little guy would throw up - non-stop and we were told it was a brain issue and whenever the brain healed the vomiting would stop. However the doctor at the oxygen center - suggested we take him off of dairy products and that was our miracle solution. Even the GI doctor or dietitians or his neuro at Mayo never suggested this. (his vomiting lasted for a little over one year) He will now vomit occasionally after having a seizure - but it was not uncommon to have him vomit 5 to 6 times a day when he was a baby- and boy does our carpet show it - often it just came up - with no warning. I can not express how grateful we were to see this end.
So as I look back our son sure has traveled a long road and has made significant progress - I sure am very proud of his determination - and can only hope for seizure control and further developmental improvements. I never give up on hope, prayer, love, and faith for our little guy - which we call little muscles!!
I remember when he was a baby and he would lay on his back - and just lay there- I would put a toy in front of him and he wouldn't even grab at it - I remember getting very frustrated and yelling - just grab the "#%&^*" toy - and luckily today he will in fact grab a toy - as long as it is in front of him - he still is unable to grab or reach for a toy that is out of his reach - eye site might be the reason.
I then think of his sitting ability- I remember placing him in the sitting position - when he was a baby - and he would just lean forward and then roll to the side (like a limp noodle) - I again began to get frustrated - and asking - why are you unable to sit - just sit up - it isn't that hard - but it was a hard task for him - and then just one day - he began to sit - I think this occurred when he was around 1 years of age.
I then think about rolling over - we would lay him on his belly -with his face laying towards the ground - and I would say - why don't you roll over - who would want to be in that position - it took him a long time to get the upper arm strength - to allow him to push himself off of his belly. He is now able to roll over from belly to back - but still not the other direction. I am uncertain at what age this occurred at. (I never updated his baby book with his advancements - it would often get me depressed knowing how off schedule he was to the "typical" child.)
I then think of him getting his belly off of the floor into 4 point. I think he developed this skill while doing his first oxygen dives - he was around 2 years old. He would go up and then go right back down- and currently at the age of 2 3/4 - he stays up for quite sometime - still not crawling - but the strength is there. (he has begun to move one knee an inch forward which is a huge step)
I then think of him taking steps - he still isn't doing this alone - but will do it if you hold onto his middle half or his hands. I think this also developed last summer (when he was around 2) - around the same time when we were doing his first 40 oxygen dives and MEDEK therapy in NJ - I still can not get these words out of my mind - which was told to us via an on-call neuro doctor when Brextin was only 4 months old - "your son's brain waves are so slow that he will not walk or talk" When I see him lift his foot and move it forward - gives me hope that he will walk - it just is unknown as to when.
I then think of him making sounds. He has always been a chatty child - however we did lose some of that along with his fun giggle while he was first dx with Infantile Spasms. (this is the only regression we saw - along with eating by mouth) He still is unable to talk - but is beginning to make a couple new sounds. We still have not gotten his giggle back - but he is beginning to smile a lot more than usual (This started once we weaned him off of topamax)
I then think of standing. He still is unable to do this unassisted - but he is moving forward. When he was around 2 1/2 he began to stand up while leaning up against a couch. However he will tip right over if you were not near him (he still doesn't have the relax to put his arms out to catch himself from falling) - However today he is beginning to stand while holding onto a toy walker or even his crib - we do have to place him in this position - but he stays for about 5 to 10 minutes he is even daring and wanting to bounce while standing and holding on.
Then I think of his vomiting issue - this is the biggest improvement - our little guy would throw up - non-stop and we were told it was a brain issue and whenever the brain healed the vomiting would stop. However the doctor at the oxygen center - suggested we take him off of dairy products and that was our miracle solution. Even the GI doctor or dietitians or his neuro at Mayo never suggested this. (his vomiting lasted for a little over one year) He will now vomit occasionally after having a seizure - but it was not uncommon to have him vomit 5 to 6 times a day when he was a baby- and boy does our carpet show it - often it just came up - with no warning. I can not express how grateful we were to see this end.
So as I look back our son sure has traveled a long road and has made significant progress - I sure am very proud of his determination - and can only hope for seizure control and further developmental improvements. I never give up on hope, prayer, love, and faith for our little guy - which we call little muscles!!
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