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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


MEDEK day 5

MEDEK 5th day

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.

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)

MEDEK (3rd day)

Brextin attempting to crawl (3rd day)

I 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)

Brextin 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.

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.

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)

MEDEK (3rd session) He was tired!

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

MEDEK (3rd session - still crying)

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 -

Third 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)

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

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

Video of Brextin walking with MEDEK therapy

More MEDEK videos

More videos of Brextin getting MEDEK therapy

Video of MEDEK and sitting up

More videos on MEDEK

Here are some videos - of MEDEK

Here are some videos of yesterday's therapy - I was going to wait until I get home to download the videos - but I probably won't have time - so I will just quickly delete them from my Uncle's computer.


MEDEK sure is a wonderful therapy - it sure makes Brextin work hard - it is not a "fun" therapy - the child does not play throughout the therapy - they have to work hard - to work against gravity. I have taken a TON of videos and plan on uploading them once we get back - I am currently using my Uncle's computer and don't want to download the videos to his computer - but I promise I will load them on once we get back. Our first appointment was 10:15 and then our second one was at 7:30 - but he had someone cancel so we got moved up to 6:00. We struggled to find things to do in-between appointments - we did manage to find a zoo and then a couple of strip malls - but the temperature was 98 degrees so it was a struggle just to stay cool.

Again - no seizures yesterday - Yippee!!!

Sunday, August 9, 2009

Today we saw New York - boy was it an adventure.

We ventured into New York today - it was suppose to be raining all day - with a chance of severe storms - which was a concern to us - since we had Brextin along- but luckily we saw NO rain - we were able to make it to - Battery Park (Statue of Liberty), Times Square, and Central Park. We even were able to sit in a lawn chair on 7th Avenue and face Times Square - so we purchased shirts that read - I "lounge" New York!

Tomorrow morning is when he begins his Medek therapy - he has been a good trouper throughout our adventures.

We have schedule surgery to be on that Tuesday after I come back for a feeding tube - I sure hope we are making the right decision - it is so stressful to feed him liquids - and hopefully we can pump more nutrients into him.

We are also in the process of scheduling more oxygen treatments - I will spend my Christmas vacation in Madison - and Andy will complete the other 22 sessions after me. I just got done reading about Elijah (a friend of Brextin's) who has done 3 (40) sessions of oxygen treatments and have seen wonderful results - he has actually caught up to his peers that he no longer is receiving physical therapy - gosh how I pray for success for Brextin.

Pray for success for us tomorrow - I sure hope we will be able to find the therapy center and more importantly - hopefully he will stay awake!! He will have two sessions a day for 5 days.

OOH ya - good news!! I have not seen ANY seizures for TWO days - which is amazing!!!

Friday, August 7, 2009

We are heading to New Jersey!!

We fly out tomorrow - yippee - sadly he is still having seizures - about 2 every day - unfortunately the seizures tend to wear him out so he sleeps a lot during the day and is unable to move around and work on his development.

I sure wish we could avoid the feeding tube - I am typing this as I am trying to feed him - since he pools his liquid in his mouth for such a long time - I am able to type in-between as he slowly swallows -

I have asked my fellow friends on the Infantile Spasms list serve - and some say do all that you can do to avoid the tube - I strongly feel as if we have - we are just running out of patience - while others say it was the best thing they could have done for their child -

I am torn - I just know that I want to make feeding time enjoyable for the both of us - and know that the time is right -

I just wish I had another month off from teaching so we didn't have to do it so close to his MEDEK therapy -

Please continue to pray - for our safe return.
Please continue to pray for an improvement on his development.
Please continue to pray to end all seizures.
Please continue to pray for strength to hold our family together - the stress of our wonderful child can take a toll on any one's family.
Please continue to pray that feeding will improve with out any complications.
Please continue to pray for all children who are special in all of our lives - I have met some wonderful children in the past few years who could use some extra prayers - such as Eliza, Elijah, Gavin, Sara and all the other children who I have met through the yahoo list serves.

Thank you to all who have said prayers for our wonderful child they are very much appreciated!

Thursday, August 6, 2009

Brextin self feeding (WOW)

Here is a video of Brextin feeding himself - some organic puffs -

Oddly enough we are scheduling him to receive a feeding tube -(mostly just for liquids) - we fly out on Saturday and come back on the 15th from MEDEK therapy and then on the 17th of this month we will meet with the surgeons at Mayo and then on the 18th we will have a g-tube placed to help feed him.

We have struggled over the past two years to feed him - we usually have done it by having a ton of patience and by using a syringe and then we moved up to a squeeze bottle - however often it has taken us over 1 hour to feed him 7 ounces of fluid - so hopefully this the tube will help relieve some of our stress and give him proper nutrients as well.

We at no means will stop feeding him orally - but our hopes are to feed him at least 30 minutes and then whatever he doesn't eat will be placed into his feeding tube-

I am praying that he won't regress - we have heard some kiddos who get the tube -stop eating orally all together and I sure hope that doesn't happen - especially since he has begun to use his tongue a lot more as he explores his mouth.

One other negative that I have heard about g-tubes - is that reflux could occur - and I certainly don't want that to occur - it has been nice to be vomit free (I think it has been at least 6 months since went down that road)

Wednesday, August 5, 2009

Seizures are exploading - terrible news!!

Brextin has been having a ton of seizures the past four days - which is concerning me a ton -

We will begin to increase his seizure medicine - back to what it was 4 weeks ago. He only had two seizures yesterday and the day before - however today he had at least 6 seizures.

I hate to see him experience the seizures - I feel so helpless - I often try to just calm him and reassure him that I am near him and that everything will be ok.

I don't recall a day in his life that he has had this many seizures and so I am praying that they will go away again - I had high hopes that we would be able to wean him off of the terrible drug called toppamax - but it doesn't appear as if that dream will not come true.

Once he has a seizure he gets very tired and tends to sleep a lot - I am hoping that we are able to get the seizures under control since he will begin MEDEK therapy on Monday - MEDEK is a type of therapy that will occur two times a day - spaced out at least 4 hours apart. My mom will be joining me on our trip.

Today is my oldest son's b-day as well - so happy birthday Big Brother!!

Monday, August 3, 2009

Brextin's in Pain

The only time Brextin cries is when he is in pain - such as constipation, getting blood drawn, receiving a shot, etc - however lately he has been crying A LOT - for the past couple of days and we are stumped - I am awaiting for a phone call from our local doctor so she can check and see if he has a sore throat or another ear infection. I have placed my fingers into his mouth and I believe he has a tooth that is popping through that might be bothering him and giving him pain - but it is very hard to see him cry as much as he has - I did give him some tooth meds last night and a pain reliever as well - but it only lasted a couple of hours - and so we are very strung out on sleep.

I am hoping he is relieved of his pain soon. Here is a video of Brextin crying - I just hate to see him cry.

We have also been thinking very highly on getting a feeding tube for him - it has taken me over 1 hour to feed him a 4 ounce container of pureed baby food and 7 ounces of fluid - We feed him three times a day - so this takes over 3 hours of my day - and it is very time consuming - he often just keeps his liquid into his mouth and just pools it -

We are however excited for our trip for this Saturday to explore MEDEK therapy - we have not bought flight insurance so I am hoping his crying isn't anything serious.