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Tuesday, August 25, 2009

G-tube feeding (last video - explaining how to flush the tube)

This is a video explaining how to flush the tube - to clear the g-tube. Flush with about 15 -30 cc's of water.

G-tube feeding (How do you know if he is full?)

Here is a video - explaining what you do once the fluids will no longer drain downward. remember to clamp the extension tube before you empty the syringe.

G-tube feeding continued (bolus feeds)

This video will show you how we add a syringe into his extension tube and allow gravity to drain the food into his stomach. Brextin drinks Rice milk with Reliv supplements.

G-tube feeding continued (extenstion tube and clamp)

This is the second part of feeding our son through a G-tube. This one explains how to attache the extension tube and the clamp - that needs to be closed in order to prevent stomach juices from coming up.

G-tube feeding (at no means am I an expert)

These are some videos on how to feed our son via g-tube. This is how to connect it. These are for anyone who will be taking care of our son either through daycare or RESPITE. I have yet chosen to do respite - I am fearful of leaving our son in the care of a total stranger - however I will be looking further into it - so I can spend more valuable time with his older brother.

Friday, August 21, 2009


video video

MEDEK day 5

video video

MEDEK 5th day

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MEDEK 5th day

We had two sessions lasting 45 minutes on our 5th day of MEDEK therapy - but on our last visit - our therapist created a home exercise program for us - and the videos are to long to included on this blog - but I will try to post as many videos as I can.
video video

Wednesday, August 19, 2009

Surgery went well - we are back at home.

The surgery went well - we stayed over night in the hospital for observation and so far everything looks good. He is already sitting up today and is willing to stand while holding onto our fingers - He was fed via pump and feeding tube throughout the night and this morning we were able to feed him by mouth and then by a bolus feed - this is when we are able to place liquid into a syringe and allow the milk or formula drain into his stomach by gravity. The first time was uneventful. However I can not say the same when it comes to medicines - we thought it would be useful to use during medicine time as well - however his seizure meds get caught in the tube and actually cause a blockage so we are going to ask to get the med in a pill form instead of the sprinkles.

I must say the first time I looked at his g-tube on his stomach it caused me to tear up - but in the long run I really feel it will be very beneficial to him.

Tuesday, August 18, 2009

Where are all the special needs parents - Essay?

This was sent via one of our list serves and thought I would share it -

Where Are the Parents?By Sue Stuyvesant, Parent

I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE!

OK, now for the reason I'm posting.To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?"

I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around...... To make

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.Sue passed away in October 2003. Michelle passed away a week before she as to turned 18 in September 2005.

G-tube (feeding tube) surgery is today.

G-tube surgery is today - please say an extra prayer today as we venture into this exploration of helping our son get the proper nutrition. The doctors at Rochester Mayo will insert a Micky button today and have asked us to stay for 24 hours for observation. Thanks again to my parents for taking our oldest son - we are scheduled for surgery at 6:00 am and will be hitting the road shortly around 4:00.

Sunday, August 16, 2009

Brextin and his MEDEK therapist - Azriel

Buddies :=)

MEDEK (3rd day)

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MEDEK (3rd day)

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Brextin attempting to crawl (3rd day)

videoI have a ton of video that I would love to download from his MEDEK therapy - but with my days full of being a mother running around - I am trying to do a little here and there - so bare with me - as I struggle on getting the videos uploaded. On his 4th day - our therapist worked more on crawling exercises.

MEDEK therapy (3rd day)

videoBrextin received MEDEK therapy for 5 days (two times a day - for 45 minutes for each session) Allows remember these exercises are being done by a professional Physical therapist - teaching us the parents on how to do them at home. He recommends doing these exercises for at least 30 minutes - two times a day. video

Here are some more videos on MEDEK (3rd day)

Here are some more videos on our son receiving MEDEK therapy - please keep in mind these are done by a trained Physical Therapist and if you are interested you should take precaution and make an appointment with a trained MEDEK therapist so a home program can be created for your son or daughter. You need to make sure that your child does not have brittle bones - since it is possible that bones could break using this therapy if you do not do them correctly. video

We are back!

We got back from NY/NJ just in time for my co-worker's wedding - boy was she beautiful - it was real nice to gather with co-workers - to bad we go back to school next week. My summer has been filled to the max with therapy for our son - we continue to pray for improvements each and every day.

Thursday, August 13, 2009

Therapy update

I did not have time to download any videos today - in fact - I will probably wait until I get back to Wisconsin to download anymore videos -

He is doing a great job during the therapy - and amazingly staying awake - he is however very tired throughout the session and often falls asleep as soon as we leave.

I have been doing my best to use the MEDEK techniques each time I sit or stand Brextin up.

Our last session is at 4:30 tomorrow and then we plan on going out to eat with our uncle John and we might head to NY - but we have been staying grounded a lot- it has been a challenge taking Brextin anywhere lately - we have found not a ton of places around here are handicap accessible and he is getting to heavy to carry for a long period of time - and it can be a challenge taking the stroller up and down steps - even if we fold it.

We board our plane - very early on Saturday - I selected an early flight so I can make it back home to attend a co-worker's wedding. Since it can be a challenge to find a sitter for our special child - I will probably take him and my oldest son with me to the wedding.

Currently the only person willing to take our son is my mother and since she has been with me throughout this trip (I am forever thankful for her help during this adventure)- she deserves a break - I think it is time I check into respite services in our area - I have always been scared leaving him with a stranger - and hoping he is in good hands - I think there is a lady who attends Our Savior's Lutheran Church who is respite certified and she mentioned to me that her very own son's had epilepsy - so maybe I will give her a call when I get back.

Brextin has been through a ton of events in his short life and I can only pray for the best for him and our family. My heart and prayers go out to each and every family who is battling the same situation as ours - it sure can be a battle to remain strong at all times.

Wednesday, August 12, 2009

Brextin MEDEK - 4th session - not crying


MEDEK - 3rd session (crying)

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MEDEK (3rd session) He was tired!

videoI accidently posted his 4th session before 3rd session - so the videos are a little out of order.

MEDEK (3rd session - still crying)

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MEDEK 3rd session (he was tired!)

Brextin only had a 35 minute session - he was so tired!


OOPS - NJ will get $25.00 from us - we didn't see this sign when we arrived at 9:00 pm the night before and our first therapy session wasn't until 3:00 so we were parked in the street on Tuesday - and we got a ticket!!! OOH Well -

videoThird session.

I just heard from Nancy (who we bought - Brextin's neck ring from - a floatation device) she said that one other of her clients from VA is also visiting Azriel right now - what a small world!

More MEDEK therapy videos (not crying)

We asked Azriel - why was it that Brextin was crying in the first 3 sessions - and he says it is because - the body is working against gravity and it is hard work.


MEDEK forth session (not crying)

video video

Tuesday, August 11, 2009

Azriel Novogroder is our MEDEK therapist

This information is located on his business card:
Novogrow LLC
Pediatric Physical Therapy

Azriel Novogroder PT - owner

1033 River Road
Suite 3
New Milford, NJ 07646

201-836-6250 (I tried this - website - but it didn't work)

I was referred to Azriel by a friend on the Infantile Spasms list serve through Yahoo Groups- her son Sam sees him as well - they drive over 10 hours to visit him -

I have been very impressed with Azriel - he interacts with Brextin while doing the therapy - and provides a sense of humor throughout.

Pictures of our adventures - in-between therapy sessions

Lounging in NY in Times Square
M&M World in NY

Central Park in NY

Times Square in NY

Battery Park in NY

Video of MEDEK

videoI posted this video below - but it wasn't working so I thought I would try it again.

Video of Brextin walking with MEDEK therapy

video video

More MEDEK videos