Infantile Spasms - infant epilepsy - Microcephaly (Brextin became our guardian angel in May 2010)
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Tuesday, March 31, 2009
Jimmy John's for Brextin!
We are so honored to be surrounded by so many thoughtful individuals - thank you so much!!
Monday, March 30, 2009
We had a wonderful weekend!
We had a committee meeting for his benefit last night and things are coming together - we have about 30 baskets filled to the rim with donated items up for the silent auction along with a Packer's football signed by all of the 2008 players - and two Minnesota Wild trading cards signed by two goalies.
We are getting excited for our event to occur and have a ton of loose ends - but would like to thank all of the volunteers that are helping us plan this and for all of the local businesses that are supporting our son's effort!
We also will have local police officers present to provide finger printing for local families along with our local volunteer fire department will have trucks present for kids to explore - of course all venues are subject to change but planning of events are taking place - and I thank all of those for your support!
Saturday, March 21, 2009
Brextin has been doing much better!
Plus we have two great stories to share:
Brextin is going on three weeks of no throwing up! Yippie
Plus he hasn't had any more MESSY diapers - however he hasn't had any stools in the past 2 days - so we go from diarrhea to constipation - again our little guy just can not win.
But he even did a little splashing in the tub - which is always nice to see!
Brextin is having more seizures!
Our daycare provider thinks the seizures are being brought on because his glasses are so strong and they are causing havoc on his brain - so we are going to limit his glasses throughout the day.
We are scheduled to see our neuro doctor the 1st of the month - so Brextin can get fitted for a special helmet he will need to wear whenever he is sitting up - this is needed because lately he has been having the seizures and he just tips over and hits the floor. So we want to prevent anymore brain damage from occurring. He will also be having some blood work to check for the amount of seizure meds that are in his system - he will also have an EEG.
Brextin has gone two weeks of NO throwing up!
Brextin just got glasses - look how adorable he is!
Sunday, March 15, 2009
Brextin had a seizure this morning.
Saturday, March 14, 2009
Brextin's Benefit April 18th 11:00 until 4:00
Watch Brextin bounce
This is a video of Brextin bouncing in his specially designed Merry Muscles from an Occupational Therapist in Canada - if you were to come into my house and see him bounce - you would never guess that he has special needs - he really loves to bounce - I have even added a small trampoline to better enhance his development - I love the fact that the trampoline is enclosed - so I can add plastic balls and make it into a ball pit for sensory therapy as well - big brother even enjoys the trampoline and ball pit. I also tie noise making items to the bouncer to encourage him to bounce even more - he often will stare at the silver measuring spoons or the silver bells that I attach - since he is legally blind the shiny items even provide vision therapy as he looks up at them.
I just wish there was something out there to help him with upper body strength - he will never be able to crawl or walk unless he can figure out how to balance his middle half. He just got fitted for a gait trainer - thanks to baby Elijah who is allowing us to borrow it to allow him to learn to walk - we are not quite at that mark in his life yet - but it sure is nice to see him inside the trainer and dreaming of the day - as of right now he just bounces.
Friday, March 13, 2009
Brextin is doing better!
We did skip therapy in Hudson this week since he was just not staying away - and then all of a sudden he was wide awake and just fine on Thursday. He actually had all three therapies from his birth to three teachers and got fitted for a gait trainer. We were so lucky to receive a gait trainer from Brextin's friend Elijah. Elijah who is a couple months younger than Brextin - has seen wonderful success with hyperbaric oxygen therapy and it has been nice to connect with other parents who have similar children. We continue to pray for all children in need.
Sunday, March 8, 2009
Brextin back in the ER
On Friday he just kept throwing up while coughing and so my mom came over and stayed the night to help throughout the evening. On Saturday Brextin and myself missed his cousin's birthday party- I just didn't want to risk taking him outside with his bad cold - so my mom took big brother to the event - but since he wasn't keeping his food down and or any liquids - I took him to the ER.
The gave him a breathing procedure, took blood, and gave a chest x-ray - all tests were normal - except that his ears are really infected - so they gave us a shot that was an antibiotic to help. They also gave us a liquid steroid to help with his cough - and have been instructed to follow up on Monday with his regular doctor. So far he has kept breakfast down and hope that lunch will go just as easy.