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!
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.
Friday, February 20, 2009
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
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
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:
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)
Catch himself if he leans while sitting
Track 100% with his eyes
Hug his mom or dad