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Tuesday, March 31, 2009

Jimmy John's for Brextin!

Last night we were invited to attend a grand opening of a Jimmy John's here locally owned by a handful of our friends and they so graciously donated a huge donation towards Brextin's benefit and we are so ever thankful -

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 wonderful weekend - Brextin did have one seizure and did throw up once - but other than that - he was a very happy and energentic. Finally on Sunday he had a stool.

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!

Brextin is doing better - we stopped having him wear his glasses and we haven't seen any seizures.

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!

We have had a terrible couple of days - for starters - he has been having more seizures - and our daycare provider even said - he stopped breathing during one at their house - this is so alarming to me - plus we are so lucky he hasn't vomited lately - but since Sunday it has been coming out the other end - NONSTOP!! My husband took him to the doctor this morning and his ears looked fine, no temp - they think he might have some type of flu and just to keep an eye on it - we just can not WIN - if it isn't coming out of one end - it is the other - our poor guy!!

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!

We have changed his toddler formula - "medical" food - we switched to Ultracare for Kids (it doesn't have any corn syrup) it was suggested by the doctor in which we will see when Brextin goes for Hyperbaric Oxygen Therapy - it is rather expensive ($45 for a container with 21 servings - we try to stretch the serving sizes since he is also eating organic stage 2 babyfood) - but it actually has been two weeks - minus the times in which he threw up due to a seizure or having a terrible cold - it is so much more comforting knowing we are able to provide our son with nutrition and he is actually keeping it down - we have prayed for these days to arrive - and they have - I just hope we continue being lucky! Yay for Brextin :-)

Brextin just got glasses - look how adorable he is!

Our little guy looks all grown up - He just got his glasses yesterday - the glasses are really really thick - when you look at his eyes through the lenses they appear to be 3 times the normal size - he really is blind - It is still early to tell if we think he is seeing better with glasses - but we are willing to try anything -
At certain times Brextin does receive Badger Care when our insurance will not cover certain things - and this is one situation - so we were not able to pick out these glasses - they do have hooks that go behind his ears - but they still slide down his nose.
If we feel as if the glasses are helping with his development we might look into getting a better pair that actually fit his face structure - and possible add a band that would go around his head.

Sunday, March 15, 2009

Brextin had a seizure this morning.

I was just commenting how happy Brextin has been and improving - and then this morning as I sat him up in the bathroom as I was ready to jump in the shower - he tipped over and had a seizure - when this happens his body stiffens right up - he turns bright red - his eyes get REALLY big and then he vomits. By now we are able to view the warning signs that a seizure is taking place - my husband is currently giving him a bath - and now he will sleep for at least 3 to 4 hours. It just irks me as soon as we are having a high - we are given a blow to bring us back down - it just is not FAIR!

Saturday, March 14, 2009

Brextin's Benefit April 18th 11:00 until 4:00

This is the flyer for Brextin's Benefit - It will be April 18th from 11:00 until 4:00 at Elk Mound High School 405 University Street. - A spaghetti lunch will be served until 1:30. Please come for kid games, silent auction, raffles, cupcake walk, a possible thrift sale and many other activities - hope to see you there - you will be making a difference in our son's life - please help and spread the word -





Watch Brextin bounce


videoThis 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!

I am proud to say that Brextin is doing much better - he is back to being himself - he has been even keeping his food down. My mother and daycare provider are away on vacation together so it should be interesting around here since they are my backbone - but we are surrounded by a ton of other family and friends. We have been invited to attend a healing prayer chain at a local church in the community in which I teach at and will be planning to attend on Sunday evening. Keep the prayers coming in for our little guy -

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

Brextin just had a 4 hour visit yesterday to the local ER - he has a terrible cold! They took blood, x-rays, and provided a breathing procedure. It all started this week - he just wasn't himself, sleeping a lot, and not keeping his food down. So Andy took him to urgent care on Friday and found out that he had double ear infection. So now we are scheduled for an ear appointment at Mayo in April. Since he keeps getting so many ear infections they are leaning towards inserting tubes - which will be beneficial when he does his oxygen dives in June.

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.