It has been heaven!

Ever since we switched back to our name brand seizure drug - Brextin has been doing wonderful. He hasn't thrown up since Saturday night - He is however waking up often in the middle of the night just crying - we think he may have gas so we open up his feeding tube and a gush of air comes out - however he continues to cry - since he can not talk - we have no idea as to why he is crying - we try to console him and then head back to bed - often he does finally fall asleep.

I am still waiting for Mayo to return my call - Brextin is suppose to have an EEG scheduled to check for seizure patterns and some blood tests - however it has been a week - since Mayo has returned my call - I did call today - but they of course said they would call me back once they could figure out appointment dates.

We have been struggling for feeding tubes - since we only get two provided to us threw Medicare insurance a month (since my work insurance won't cover them since they are not considered to be durable medical equipment) - but luckily I was able to find our needed feeding tubes via ebay - and will be receiving some shortly.

If you check the comments - someone stopped by Brextin's blog and shared with me a helpful site called Oley Foundation - I noticed there is a link for medical supply exchanges http://www.oley.org/equipexchange.html so I might follow up and inquire on the site - they also provide support groups with similar situations.

Things are looking better :-)

It has been a couple of stressful days lately - Brextin started to throw up once we switched to a pill form of topamax - I was unaware that it was the generic form (until I picked up his generic sprinkles) - I then asked our neuro if we could switch back to the sprinkles to see if that was the reason why he was throwing up - When I picked them up at the pharmacy they told me they were the generic version and assured me that we should not see any difference from the name brand drug - (this was before I went home to find that the pills that were causing him to vomit were also generic) well that was the night from HEL* we were for certain we were going to end up in the ER - however we stayed strong and he pulled through it -

Be careful generic/name brand drugs are not always the same - every person is different.

I emailed our doctor again and asked if he could get us the name brand drug in sprinkle form and he doesn't believe that the drug is causing our problems - but would be willing to call it in - after a fight with our insurance company we were able to pick up the name brand drug topamax (over $800) a month - unbelievable!!! Well we have gone almost two days without any seizures and without throwing up - I sure hope we are able to stay on this track!

We have been doing our best at getting his sprinkles down his tube - we have found if we mix the sprinkles with his food - it doesn't clog up his feeding tube - unlike just the liquids.

I am awaiting a phone call from Mayo - we are trying to get a 24 to 48 hour EEG scheduled and blood work (I have been told when you are on topamax you should get your blood tested - regularly) well he has been on the drug for almost 2 years and has only got his blood work done in the very beginning - hmmm doesn't seem right.

This was the rash that appeared.

This is the rash that occured while he was having the seizure.

Scary night!!

We have been having a ton of scary moments lately - and last night was the worst - Andy took Brayden to church I stayed home - fed Brextin, bathed him and placed him down to sleep around 8:00 - I actually went and laid down myself - I have been exhausted lately - as I was laying down - I heard a scream - and I mean a scream - then it registered it was Brextin - earlier in the night we had began to try the generic form of Topamax (since we think maybe the pill form of topamax might be upsetting his stomach) I went to pick him up - and he stopped screaming and then about one minute he did it again - I then took him to my room - in hopes he would lay down with me as I watched some TV - however we began to see more seizure activity - activity that wasn't stopping - so we decided it was time for distat - a drug that you inject through the butt -- in hopes it would stop his behavior - he became very limp - and we also noticed a rash around his neck, upper legs, and arms - his eyes were open - and his adams apple kept twitching -



We called the doctors on call at Mayo and she said he is probably sleepy due to the distat and that he will probably sleep for the rest of the night and to follow up with our local ped doctors in the morning - so we placed him in his bed and decided to go to bed - now it was around 10:00 - just as I laid down I heard him cough - sure enough he threw up - we went and cleaned up his sheets and bathed him again and went back to sleep - now it was around 10:30 - and sure enough he threw up again - so we repeated our earlier steps -



He then finally went to sleep - and it is now 6:00 in the morning and he appears to be resting nicely - I am going to try to post some video of his seizures last night so his neuro doctor can take a look at it -



Ohh how I pray that these terrible days will end and give our family some peace with happy days!!

Brextin's current photo's of his G-tube still not improving

We are still fighting granulation around his feeding tube - these photos are being posted in hopes of nurse Rachael having a chance to look at them - we use silver nitrate every other day and then place gauze around it - two times a day. We also place a cream around the button in hopes it will help against liquid discharge. Each time we pick him up - he tends to flinch - so I know it is of some discomfort.

Brextin all smiles!!!

Brextin was full of smiles at dinner time - so I thought I would include this video - he can be a very happy baby -

Brex excited while eating!

This is a video of us feeding Brextin with a device my dad designed - it has been very helpful. Here he is very excited - plus I show his new foot braces - they are cute!!

ShopKo experience (Brextin throws up in public Yuck!)

Brextin just got some new braces http://www.surestep.net/ (with dinosaurs) on them - and the company suggested that Brextin should wear shoes that have a rounded toe - so I went to Shopko to see if I could find a pair - and they did - the shoes even have Velcro - and they have a camo print - which I am sure big brother will like -

However - as I wondered throughout the store - he had a seizure while sitting in the cart - I quickly moved the cart to an area that did not have carpet on it - just in case - he decided to throw up - and sure enough he did - mind you at this point I had nothing with me to wipe it up - so I then asked the shoe department associate if she could call a Shopko associate over to help me and I explained to her that my son just had a seizure and he just threw up - at this point - two customers came up and asked if they could do anything - I gratefully asked if they had any Kleenex in their purses so I could clean up my son as well as my hand - and they both offered - however still no associate - however the shoe department associate came back and gave us a roll of paper towels - which was an asset - then after it was all cleaned up a Shopko associate came up and we mentioned that she should have the area cleaned - but not to be frightened and reassured her that my son did not have the flu or a sickness and that he only threw up because of the seizure. During this whole moment - I began to cry - probably because I was embarrassed - and one of the customers offered me a hug - which was comforting.

I still can not believe that he went over 5 months without throwing up and now he is back at it - it just nerve wrenching!!! OOh how I pray that this vomiting stops!!

This is a video of Brextin throwing up - right after he had his seizure

We have gone a LONG time of without having him throw up - and now we are back to it - it just has us in a whirl wind - I prayed so hard to keep him from throwing up and we were blessed for 5 months and now we are experiencing it all over again - this video is very graphical and I mean graphical - it is of him throwing up - I have posted this so those that take care of him - are aware what he could do at any given moment - this is part of the reason why it is so tough to find RESPITE care.

This video is of Brextin in mid-seizure while being fed via feeding tube

The purpose of me posting this is so our neurologist can view it - I was feeding him and all of a sudden he had a seizure - this one appeared to be different - he actually did some blinks in-between - and his throat or Adam's apple looked as if it was twitching - I even thought he stopped breathing afterwards he threw up - I will post that video as well -

Please understand I know these videos can be tough to watch - but this blog allows us to communicate with doctors that are 3 hours away - and it has been a very helpful -

Family time!!

We got to spend a little R&R at my parents cabin. Boy did we need that!

Brextin's Mic-key button and granulation

Brextin got his button installed about 3 weeks ago and we have been battling granulation - it is a type of build up that forms around his button (his feeding tube) - we have to use silver nitrate to burn it off - it doesn't hurt as long as we only touch the infected areas -

The very first time we saw the build up - I was concerned that it was infected so we went to our local urgent care last Saturday but that doctor refused to do anything so we called our local doctor - and she came in on a Saturday and showed us how to use the silver nitrate and to use it every other day - I am beginning to think I should receive an honoring degree as a nurse and a therapist after all that we have gone through with our son.

Please forgive me - as these pictures are disgusting - but the main reason why I keep this blog is to help others out - and when this first occurred I could not find a picture on the Internet to compare it to - so I have decided to post Brextin's photos.

We have been very busy!

We have had good and bad days lately - school has started again for me - and so I am not able to update the blog as I was during the summer - but I will do my best to update it - when there are any improvements or set backs.

Here is a photo of Brextin while he is having one of his seizures. We were up at my parent's cabin. I will try to post the video as well - however the video was taken in the middle - I wish I was able to get the full seizure on tape - but we just never know when they will strike - this one occurred while he was napping on his belly - I noticed his hands getting stiff - and rolled him over and saw that he was having a seizure. There is nothing one can do - you just have to let him have it - I like to reassure him and myself that everything will be ok.

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.

MEDEK Day 5

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.

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.

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.

MEDEK (4th day)

Three ways to get him to stand.

MEDEK (4th day)

MEDEK (4th day)

MEDEK (4th day)

MEDEK (4th day)

MEDEK (4th day)

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.

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.

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!

More MEDEK

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)

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
www.novogrow.com (I tried this - website - but it didn't work)
novogrow@optonline.net

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.

WoW MEDEK

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!!!

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) www.elijahland.com 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!!!

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!

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)

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!!

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.

Brextin standing while leaning on couch!

Here is a video of Brextin standing against a couch - his knees are not buckling and he isn't even bouncing - you have to be near by because he will just tip over - sometimes are better than others - this video is not the greatest as he does tip over and I have to catch him. I might try again later - to see if I could get a better video.

I know our Physical therapist was pleased to see this - he was not doing this before our trip to Madison - she said she knew this because she tried to have him stand before our trip but he would not perform the task.

Insurance blahs!

I am very annoyed with our new insurance company - we use to have Anthem - and our policy allowed our son to receive 30 sessions a piece of Occupational, Physical, and Speech therapy - and our school district recently changed to Group Health and now will only provide 40 sessions - combined - which means our son will only be able to get 15 sessions of PT, 15 sessions of OT, and 10 sessions of speech - that is disgusting!

When I talked to our insurance company - they responded with . . . we don't provide therapy for developmental issues - we mostly provide therapy for those who are recovering from a surgery and actually speech is NEVER provided to children - but since our son has shown aspiration in the past - they are doing a favor and are allowing us to include it into his 40 sessions.

Plus our son has out grown his foot braces and when we received a new script - our insurance company replied - we don't cover orthopedic braces either - ooh my gosh - if they look at my son's feet can clearly see that he is in need of braces to help reshape his feet and now we will have to pay out of pocket -

I just wish we would have gotten more equipment when we were with Anthem - because I bet we will struggle with Group Health to receive any help -

Wish us luck as we venture into this new change of insurance - we just switched as of July 1st and today is July 21st - so I can only imagine what is ahead for us in the future.

We will be exploring Medek Therapy

Myself, Brextin as well as my mom will be hitting the skies in August for at least one week to New Jersey so Brextin can receive Medek therapy. The therapy that he will be receiving is considered to be intensive because he will be receiving it at least two times a day.

You can find more about the therapy at http://www.medek.ca/about.htm and http://www.cuevasmedek.com/cme_def.html

I have heard some kiddos respond wonderfully to this type of therapy while others have not. If you have been following our blog you will find that I am a parent who will try anything we can to improve his quality of life. The center allows you video tape the last couple of sessions so you are able to continue the exercises at home.

We will be able to stay with family as well which will save us a ton of money - they live about 30 minutes away - and am checking to see if the train near his house will be able to take us to the therapy clinic - if not we are looking into renting a car - I am nervous about driving - but I never thought I would drive in Madison and I was able to do that - thanks to GPS navigation.

The train near my Uncle's house actually takes you to NY as well - I guess it is about a 12 minute train ride - hopefully we will feel gutsy enough to explore - I actually went to NY with my Uncle last year - and I would really love it to go back. -

Not Giving up!

This is a video of Brextin not giving up - he gets up in four point and then collapses and then gets right back up - way to go Brextin - keep up the hard work!

Hyperbaric Oxygen Therapy photos

Brextin in his hood.

This is Dave the technician. He was wonderful!

Mom and Brextin on our last day!!!

Dad and Brextin - way to go daddy!

Pictures of children museum and zoo in Madison

More photos of Brextin and Eliza

Eliza loved the feeling of the air coming out of the fan in our hotel room. (Eliza is the daughter of Rebeccca who I met off of a list serve on the Internet with children similar to Brextin- she was a wonderful support team while being away from family and friends)

This is Brayden, Brextin and Eliza.

It was very tough to get a picture of the two together - but we did it !

Brayden watches to make sure everything is ok.

Brotherly love!!

Here is a list of improvements from oxygen and intentsive therapy

Since I have been back of course everyone wants to know if we are seeing improvements - these are some of the things we are seeing:

When I hold him - his legs are no longer limp - he pulls them up - so it feels as if he is crawling up my side.

His grasp has gotten tighter - when he grabs my shirt or my finger - it is a lot tighter than in the past. He actually grabbed my hair and glasses yesterday. (so he is grabbing more things)

He is crawling backwards (army style - but he does get up on four point in-between his pushes) (he did do this sorta - about one year ago but we lost it - and now it is back) (this has just started - Thursday night)

He can chew - we are able to place food into his mouth and he is able to move the food around with his tongue and smack his lips together.

He is louder and more vocal - he is beginning to make some new sounds -

He can get up on four point and hold his head a lot taller than he was able to before

When we walk him - we use to hold onto his fingers and when we lifted his right hand up - his right foot would come up (we were doing the weight shifting for him) and now we actually hold him in the middle around his waist and he will lift and move his foot forward himself - we are working on this with his gait trainer (from Elijah) and doing it ourselves.

He smiles more often - and at times I think he is getting his own personality.

Our Mayo appointments.

It is nice to be back home - we had appointments at Mayo yesterday and I must say I do have some favorite doctors and some I would rather not have to see. I think all doctors should rent a child with extreme needs for one week to put themselves in our shoes. Some of the doctors that we see with our son Brextin have no bedside manner - they do not think before they speak or do not focus on the positive. This is how our day went yesterday.

We saw an eye doctor - first off we saw this lady who did some tracking exercises - with this strange toy - I was amazed that he was watching it and actually reaching for it - she had very little to say - she was very unsociable - then we got sent to a waiting room - where we waited for at least 45 minutes then we got to see the eye doctor. He talked to us a little bit and turned on some remote control animals that were attached to the wall - in hopes that Brextin would look and be interested - I was amazed - he actually looked - only for a couple of seconds - but he still looked - the doctor thought he didn't look longer because of his place in his development (which is delayed) - he wanted to do a better exam so he placed drops in his eyes and sent us back to the waiting room. We sat there for another 25 minutes - we then went back into the room where he checked his eyes - he mentioned to us he thinks that the glasses that Brextin is wearing is to strong and are useless to even wear (we actually got the glasses from a Dr. in Hudson WI) He strongly advised us not to even put glasses on him - because nothing would be able to improve his vision - he told us he was legally blind and that was it. I had asked if we could get a vision therapy script and he strongly is against vision therapy - which just irks me - it is a proven fact that vision therapy does improve with children with CVI - which Brextin has - he claims he is unable to really do much for Brex until he is able to tell him what he can and not see - well well well - why is it that I often see other special children wearing glasses - not all special children are capable of communicating to eye doctors what they can and can not see -

This is the exact reason why I sought out the eye doctor in Hudson WI -I need a doctor with my best interest for my son's eyes - I strongly feel we need to teach Brextin how to use the eye vision that he currently does have and strongly encourage vision therapy -

So we moved onto the second visit - which was a hearing test - he just woke up for a nap which meant he wasn't all that alert - we were placed in a sound proof room - where a lady said his name from a speaker in the wall - in hopes that Brextin would turn to the sound - then she tired a different speaker on the opposite wall - needless to say - Brextin just sat on my lap - unamused. She then looked into his ears to check on his tubes - she said he had 1.5 hearing in one ear and 1.7 in the other ear - I myself - really am unsure what that even means -

We would return to this appointment to see the ear doctor later in the day - we then went to the doctor to help with his foot braces - he is a therapy Doctor - he of course started out asking us silly questions - can you son wave? can your son dress himself? when of course all he needed to do was look at his chart and know that our son is severely delayed - he then luckily went to focus on the real reason why were there - which was for the braces -currently Brextin wears braces that go up his calf and he doesn't believe that is really necessary - so he wrote a script to get new braces - plus he feels as if the current ones are not tight enough and are actually not doing what they are suppose to be doing. I need to fax the script to our insurance company in hopes they will cover the braces.

We then headed to see his neuro doctor - I really like this doctor - he always focuses on what he is doing - and not on what he isn't - the fact is - Brextin is improving - just on his own schedule and not ours. The main reason why we visited with this doctor was to see if he would lessen the amount of seizures meds - and I am proud to say - he agreed - we are able to give him 25mg less each day for two weeks and then will contact him again about going further or if we need to go back up - it all depends on if Brextin has an increase in seizures - I really do not like the drug Topamax - many doctors call it Dopamax - because it places the children into a daze - He was able to write another script promoting therapy 3 times a week for 60 minute sessions - they might be needed since we switched insurance companies as of the first of July -

Switching insurance companies is a whole another blog - our son was getting 30 sessions of OT, PT, and ST a piece and now the new company - Group Health will only give us 40 sessions combined and they actually do not offer speech at my son's age - but at this time they claim they are working things out and I am crossing my fingers that my son will continue to get his needed therapy.

We then headed back to the ear/nose/throat doctor - she looked at his tubes and said everything looks great - since he is beginning to snore - she was concerned on his tonsils - but at this time they do not look enlarged - however she wants to continue to check his progress so we will see her again in October.

Our appointments finally ended around 5:00 and we headed for pizza in Nelson at the Stone Barn.

We are heading home!!

I am happy and sad - I will miss the wonderful gals at the Communication Innovations therapy center - they made us feel so welcomed and they worked so hard with Brextin (they even created a home exercise packet with pictures so we can continue some of the exercises at home - YEA!!) - but am excited about being surrounded by family and friends as well -

Since we have had at least 40 sessions of treatments at the WI hyperbaric oxygen center - we are eligible of getting 40 more sessions at anytime for only $2000 - so over the next 6 months we will be discussing as a family if we think the sessions have been a success - I as a parent know that something is working - either it is the oxygen, the intensive therapy or both combined.

Today while at therapy he reached for a toy in front of him while sitting on his own - which is new for him - he would have reached for a toy in his high chair because of his support around him - but since he was sitting solo - I was amazed that he reached forward with encouragement.

Yesterday at the oxygen center we met an adorable 2 1/2 year old boy who also suffers from epilepsy - whose name is Cainan. Please add him to your prayers as he ventures into oxygen treatments and prays for success - he truly is an adorable boy!

They often say that the oxygen that he has received will stay within his system up until 6 months or so - which means he can continue to see improvements - I will do my best at updating his blog - as much as I can - however since I will be back home with my oldest son and living a busy lifestyle it will be limited -

Please continue to pray for our son in his development, health, as well as for strength - we are forever blessed to have such an adorable hard working son!

We will be back at Rochester Mayo for at least 4 doctor visits - they are just routine check ups - one is for hearing - one is for braces for his feet - and one is for his seizure medication - I am hoping to decrease his dosage of topamax - but since he is still having seizures - this probably won't be a possibility - but the drug carries so many bad side effects that I am hoping to wean him off of it and try a different drug with less side effects.

Again thank you to all of you who follow his blog and his progress - I truly enjoy knowing that so many people care about him - if you were to look at the very bottom of this page you will see a counter - I just began to make this blog a couple of months ago and to see that high number - excites me!!

Thank you thank you thank you - to everyone who has helped us financially to receive oxygen treatments, therapy sessions, and especially the equipment that will be needed to continue the therapy exercises at home - your love and support is highly appreciated!

We had another set back (he had a seizure)

Today was going good- Andy did his first dive and then we went back to the hotel for some lunch and then went to his two hour therapy session - he had speech first and then had Occupation therapy - however he hasn't been the same today - it has been an off day -

During speech he wasn't that into chewing or swallowing or even getting his tongue out - during occupational therapy he appeared tired - after his therapy sessions we walked back to the hotel and I tried to feed him one quick time - because I know him all to well that he will fall asleep on the way to the oxygen therapy center and I won't be able to feed him until his two hours of therapy are done which is around 6 pm- but I was only able to get 1/2 of a jar of food in him when he fell asleep.

As we were driving to the oxygen center - Andy asked me if Brextin was locked up and having a seizure - as I looked at him in his car seat - he was in fact in the middle of having a seizure - I then jumped into the back seat and calmed him down and the seizure passed - he did not throw up which was a plus - but of course it caused Andy and myself into a fight.

I am uncertain if anybody can understand the toll it takes on a relationship to have a special child - myself - I have been on a high cloud proud of seeing him improve in certain areas - and now this has brought me back to reality - he may never live a normalcy of a life - we will always be living in fear of when his next seizure will occur.

Andy did admit that he to has seen some improvements lately - but believes it is mostly due to the therapy end and not the oxygen end - I myself think it is because they are being paired as of right now -

Who knows - Andy is currently in the chambers right now and I am praying that everything will be ok - and no more seizures will occur - I just wish he could enjoy life without it being interrupted with these terrible seizures and delays - why is it our precious boy? why why why - I just want to be able to enjoy him crawling, walking, grabbing or wanting me, or having a tantrum or even fighting with his brother -I guess as of right reality needs to set in and need to remind myself they are mostly dreams and may nerve occur.

Andy did a dive!

I left my camera down in the van - but will post pictures later - of course he fell asleep in record time - Brextin slept as well - which is always nice so he can rest up for his two hours of therapy that occur soon after his dive.

We went to the children's museum yesterday and ate at a near by Italian restaurant - It sure has been nice to eat food that isn't frozen - I will be heading home tomorrow for good after his last therapy session tomorrow which is 6:00 p.m.

I can not thank the people enough who have allowed us to try this type of therapy - my heart goes out to each one of you for your love and support!

I think I am seeing progress - even yesterday while we eating at the Italian place - he was sitting in a high chair and was exploring the table in front of him - which is very seldom done and grabbing things toward him - he will explore toys at home on his high chair but those toys are colorful and are entertaining - this time he was grabbing the white table cloth, the white napkin, etc - it appeared as if he was exploring.

When I asked Andy what he thought about his oxygen dive - his response was - it is bigger in the chamber than one would think - and that I had to swallow a ton to help relieve the pressure in my ears - but it wasn't bad - I got a good nap in - actually it was the deepest that I have slept in a long time.

He got RELIEF!!

I have been feeding Brextin power pudding - which is prunes, apple sauce, prune juice and wheat bran for the past couple of days - we have also tried: a suppository, polyethylene Glycol - and he has finally produced!! yippie we can rest now - it has almost been one week since he has had a stool - we were beginning to worry!!

We went to the free zoo today in Madison and we just got back from the hotel pool - it sure is nice to be surrounded by family - our friend Rebecca and Eliza went back home today as well - we sure hope to stay in touch - it is amazing how strangers can become friends in such a short period of time.

Tomorrow we plan on going to the children's museum and then explore State Street - but since it is Sunday I am unsure how many businesses will actually be open.

Pictures of Wisconsin Hyperbaric Oxygen Center (this is where he is receiving his oxygen treatments)

Communciation Innovations (Brextin's therapy center in Madison)

Brextin is all smiles :-)

Walking

Working on vision

Brextin working on standing

Brextin working on balance and singing

Brextin playing with a piano

Keeping an eye on the ball

Brextin swinging away!

Brextin on a Dizzy Disk (it is used to teach balance)

Last Friday in Madison and Andy is on his way.

He had another wonderful day - I have been taking a ton of pictures and video so we can continue some of the exercises either at home, through birth to three or at the Special Children's Center in Hudson, Wisconsin.

Brextin's therapy slideshow

http://www.flickr.com/photos/40068275@N02/show/

I have been trying to add a slideshow of Brextin's time while in Madison - and have been having troubles - but if you click on the link above - I think it will work -

Photo of Brextin sleeping in the chamber-

Photo was taken from outside - as the technician opened up the chamber.

A good day.

A good day - we just got home and plan on taking him swimming - he is doing great with a schedule - I wake him up around 6:00 and then he has been sleeping during his first dive at 8:30 - and waking up around a little after 11:00 which allows me time to attempt to feed him (I am still struggling with this - he just doesn't want to swallow - he has been holding the fluids in his mouth) then he is awake for the two hours of therapy- usually Physical (PT) or Occupational therapy (OT) - then he falls asleep on the way to his second dive - which is at 2:30 then he sleeps while in the chambers and then awakes as we are coming up from the dive - I quickly attempt to feed him again - and then he remains awake for his additional hour of either PT or OT then he has one hour of Speech therapy - then often he comes home and takes another nap - I then feed him supper - he is up for about 1 to 2 more hours and then goes back to sleep - he has been waking up due to constipation - I did purchase some prunes and prune juice and am hoping that will help kick start his stools.

He has been walking again with a gait trainer - however if I am unable to take home at least 2 therapist with me - it will be a struggle - we have been walking him in a gait trainer that they have on loan at the therapy center - but tonight I requested he practices with the gait trainer we are borrowing from Elijah since that is the one we have in our possession when we go home -

Good news with our new insurance - as of the first of July we switched to Group Health - at first the Special Children center contacted me and told me they would only cover 6 sessions and then we would need to get a prior-authorization - which makes me nervous -

However . . . at Communication Innovations - where we are getting the intensive therapy at - has told me that I will only need to pay 10% out of my pocket - which is a blessing - the therapy has cost our family $9,000 and we had to pay it up-front - (Since we were with Anthem up until July 1st - I also need to wait for reimbursement - which will take a long time - since we finally got reimbursed for the helicopter ride that he had to take back in October)

I just hope the switch to the new insurance company will be a good transition. Andy has said he will be coming up to visit with Brayden tomorrow and staying until Monday evening - I am expected to be home next Tuesday -

It has been a long - yet short 4 weeks - and I sure hope for improvements on our son - I really believe he has been more active.

Here is a video of him working on standing.