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Saturday, February 21, 2009

This is a flyer for our son's benefit - if you are able to come you will be making a difference in his life!


This is a flyer for his benefit - it will be April 18th at Elk Mound High School from 11:00 until 4:00 - there will be a spaghetti lunch from 11:00 until 1:30
Plus there will be a silent auction, raffle, and kids games - hope to see you there!
If you click on the picture to the left it will enlarge.

Warning graphical video on Brextin throwing up - if anyone knows of a specialist that can help - please provide advice!

This is a very graphical video showing our son throwing up - this is an everyday event (we do have some days that it doesn't happen, but few) - we have had many swallow studies done and GI tests - but everything comes back as "normal" the doctors just blame it on the brain - (You can now imagine how many stares we get - when this occurs out in public) Often we have no warning. If anyone can provide advice or a doctor that would be willing to help us figure out - how this can be stopped we would be very interested in listening. We have cut out milk and soy from his diet.



video

This is what it looks like when Brextin twitches.

video

Friday, February 20, 2009

Eye Appointment

We had Winter break today so I made an appointment for Brextin to see an eye specialist in Hudson, WI. He ended up twitching all the while he was in the van. (twitching is when he tries to throw up - but he just can't - and his whole body tends to do weird movements.) The movements just wear him out - so the eye appointment was challenging - because he didn't want to wake up. I tried to stand him up a couple of times while I held onto his arms plus I tried to undress him so he would be a little cold - but it was useless. But the doctor was able to do an exam - it took much longer than intended. After placing eye drops into his eyes he believes he is far sided (he had me look through a lens to see how is currently seeing the world) (I must say things were quite blurry) - but he thinks glasses might work, but is unsure - but would like to try - he thought we would revisit the glasses idea when we came back after the Hyperbaric Oxygen therapy in July - and I myself asked why not push for glasses now if you think it might help -

He said he wasn't going to push for them now because the lenses are so expensive in children's glasses and thinks his eye prescription will need to be changed quite often and it can get expensive - yet he did mention how many kiddos improve just by trying glasses - so as I always do I have pushed for glasses - and since Brextin would not wake up - they couldn't get an accurate fit for his head and they thought he needed a smaller pair which they didn't have so they are forwarded us onto the eye department locally at Middlefort.

He did agree with the other doctors that he does have Optic Nerve Hypolashia http://www.onesmallvoicefoundation.org/whatisonh.html - he used this big circular device with black lines drawn on it - and as he turned it he was hoping that Brextins eyes would flutter back and forth and they did not - however when he shined a bright light into his eyes - he did get upset - which he was pleased to see -

We usually see an eye specialist at Rochester Mayo - but he wasn't interested in seeing Brextin back until he could tell him - what he could or could not see - however, what if that time never comes - that is why I sought out this specialist in Hudson.

After the appointment I treated our oldest son to a day at the Mall of America, my mother joined us to help out - we were able to ride on the rides, eat at the Rain Forest Cafe, and see the fish in the underwater aquarium. It is nice to try to spend quality time with Bray as well -

However, our fun was short lived - because as mentioned above - Brextin did not have a good day - he had numerous of incidents of throwing up and twitching ALL Day long at the mall - I just hate it when other people stare - however, one parent did come up and mentioned what an adorable boy. He is in fact adorable - and we love him - I just wish he would have more good days rather than bad.

Saturday, February 7, 2009

Benefit and two wonderful gals (Gay and Jane!)

I am excited as I am typing this - our little guy is jumping up and down in his Jumparoo - sometimes he can really jump - we also own the Merry Muscles - this one is similar but hangs from the ceiling - he loves that! However we need to watch him closely - I am uncertain if it is because he gets overly excited - but the other day - he was in it for about 5 minutes and jumping up and down and having a fun time and then he had an episode (might have been a seizure - and he attempted to throw up - and then just like that - with a snap of a finger - he fell asleep) I just don't understand it - at times he seems as if he is going to be ok - then at times we just do not know what to expect for his future.

I am so fortunate to be surrounded by great people- currently two people (Gay and Jane) are organizing a wonderful benefit for Brextin - the date is set for April 18th at the Elk Mound High School. They plan on having a spaghetti dinner, silent auction, and kid games to help raise money for Brextin -

The money raised will help offset our costs that we have endured with our loving son - we will be attempting Hyperbaric Oxygen Therapy (HBO) over the summer and each dive costs $150 and in order for the therapy to work - each child must do at least 40 dives - so that will cost our family over $4,000 - luckily I will be able to stay with a cousin who lives just 35 miles away from the center - which will help us financially -

In-between the HBO sessions - Brextin will be taking part in an intensive therapy session - which will last for 4 hours a day - 5 days a week - for 4 weeks - these sessions will take place in-between his HBO dives. This therapy cost over $9,000

Statistics show that more children see success if these two therapies are combined - so our little guy will be working very hard during this summer - It will be very hard to be away from our oldest son who is four - I am hoping I will be either able to drive home on the weekends or my husband will be able to drive him down to see us in Madison. These next four months are going to be very slow for me - since I am very anxious to try HBO therapy and the therasuit with him. They have said - children who do both of these therapies see better results if they are done at a younger age -

I have been praying more and more each day hoping that our child will be able to learn and be physically active.

Currently Brextin can do the following things:
Sit (we need to place him in this position)
Grab a toy if it is front of him
Open his mouth to take food orally
Bounce
Stand if you are holding onto his fingers or waist
Roll from belly to back
He can rock back and forth while on hands and knees for about 3 minutes (you need to place him in this position)
Transfer a toy to both hands
Pull off socks from feet
He can say a few sounds - babble

Currently Brextin can not do the following:
Stand alone
Pull to stand
Suck - we feed him liquids through a syringe
Roll from back to belly
Recognize his parents or sibling
Smile for purpose (he will smile if you kiss his neck)
Giggle on purpose (he does giggle if you looks at certain lights - but that is also known to be a type of seizure)
Crawl
Catch himself if he leans while sitting
Feed himself
Talk
Track 100% with his eyes
Hug his mom or dad