Onle one seizure today :-)

Brextin just came home and currently he has only had one seizure this morning - lasting about 20 seconds - he is currently taking 3ml of generic Keppra and will drop down to 2ml tomorrow and we will not decrease Vigabitran until we have his seizures under controlled. It sure is nice to have him back - I just wish the hospital would take the time to remove the glue from his hair before he was discharged. It seems to take forever to remove- they say you can use finger nail polish remover - but I don't really like to put that stuff so close to his brain.

Brextin's long road trip to his progress. . .

I enjoyed the time alone - however it also gives me time for my brain to wonder - which at times isn't good. I begin to think of what the future does and doesn't hold for our son. However I also had time to ponder the road that he has already traveled.

I remember when he was a baby and he would lay on his back - and just lay there- I would put a toy in front of him and he wouldn't even grab at it - I remember getting very frustrated and yelling - just grab the "#%&^*" toy - and luckily today he will in fact grab a toy - as long as it is in front of him - he still is unable to grab or reach for a toy that is out of his reach - eye site might be the reason.

I then think of his sitting ability- I remember placing him in the sitting position - when he was a baby - and he would just lean forward and then roll to the side (like a limp noodle) - I again began to get frustrated - and asking - why are you unable to sit - just sit up - it isn't that hard - but it was a hard task for him - and then just one day - he began to sit - I think this occurred when he was around 1 years of age.

I then think about rolling over - we would lay him on his belly -with his face laying towards the ground - and I would say - why don't you roll over - who would want to be in that position - it took him a long time to get the upper arm strength - to allow him to push himself off of his belly. He is now able to roll over from belly to back - but still not the other direction. I am uncertain at what age this occurred at. (I never updated his baby book with his advancements - it would often get me depressed knowing how off schedule he was to the "typical" child.)

I then think of him getting his belly off of the floor into 4 point. I think he developed this skill while doing his first oxygen dives - he was around 2 years old. He would go up and then go right back down- and currently at the age of 2 3/4 - he stays up for quite sometime - still not crawling - but the strength is there. (he has begun to move one knee an inch forward which is a huge step)

I then think of him taking steps - he still isn't doing this alone - but will do it if you hold onto his middle half or his hands. I think this also developed last summer (when he was around 2) - around the same time when we were doing his first 40 oxygen dives and MEDEK therapy in NJ - I still can not get these words out of my mind - which was told to us via an on-call neuro doctor when Brextin was only 4 months old - "your son's brain waves are so slow that he will not walk or talk" When I see him lift his foot and move it forward - gives me hope that he will walk - it just is unknown as to when.

I then think of him making sounds. He has always been a chatty child - however we did lose some of that along with his fun giggle while he was first dx with Infantile Spasms. (this is the only regression we saw - along with eating by mouth) He still is unable to talk - but is beginning to make a couple new sounds. We still have not gotten his giggle back - but he is beginning to smile a lot more than usual (This started once we weaned him off of topamax)

I then think of standing. He still is unable to do this unassisted - but he is moving forward. When he was around 2 1/2 he began to stand up while leaning up against a couch. However he will tip right over if you were not near him (he still doesn't have the relax to put his arms out to catch himself from falling) - However today he is beginning to stand while holding onto a toy walker or even his crib - we do have to place him in this position - but he stays for about 5 to 10 minutes he is even daring and wanting to bounce while standing and holding on.

Then I think of his vomiting issue - this is the biggest improvement - our little guy would throw up - non-stop and we were told it was a brain issue and whenever the brain healed the vomiting would stop. However the doctor at the oxygen center - suggested we take him off of dairy products and that was our miracle solution. Even the GI doctor or dietitians or his neuro at Mayo never suggested this. (his vomiting lasted for a little over one year) He will now vomit occasionally after having a seizure - but it was not uncommon to have him vomit 5 to 6 times a day when he was a baby- and boy does our carpet show it - often it just came up - with no warning. I can not express how grateful we were to see this end.

So as I look back our son sure has traveled a long road and has made significant progress - I sure am very proud of his determination - and can only hope for seizure control and further developmental improvements. I never give up on hope, prayer, love, and faith for our little guy - which we call little muscles!!

Seizure after seizure - YIKES!!

Brextin is currently at St. Mary's with daddy having a 24 hour EEG performed - this was a scheduled routine EEG - however it has came at a time in which we are weaning him off of one of his major seizure drugs - vigabritran - we began to wean him off of the drug last Saturday and never saw one seizure until two days ago and now he is having over 9 seizures a day.

Since our neuro in out of the state we have to rely on the on-call doctor - and she has suggested we increase his generic Keppra to 3ml (currently he was taking only 1ml) so it is a significant increase - however we have to do what we can do to get seizure control. She has also suggested we continue with the 750mg of Vigabitran - and wait to decrease his amount until we have seizures under control.

While at St. Mary's they have asked to do a study on him - so they added three more electrodes onto his head - to monitor "vomiting" after a seizure. Often Brextin will vomit after having a seizure - however lately he hasn't.

I myself have been enjoying time alone for the evening - my sister has my oldest son for a sleep over - so I am currently sitting in my recliner with our weiner dog sitting right next to me - updating my son's blog on my laptop. Plus I just got done watching - All About Steve - and eating Peanut Butter and Chocolate Ben & Jerry's ice-cream. Life is good - now all I can ask for is for the meds to kick in and give my son - seizure control!

He is back to having seizures

He only had one seizure yesterday - but today he had four- he goes tomorrow to Rochester Mayo for a 24 hour EEG study - we are hoping for good results - he use to have slow brain waves and they said that was common among children who have delays and are on medication. Now since he no longer takes Toppamax and a less amount of Vigabitran we are hoping for improvements.

This Saturday we will drop down to 500mg of Vigabitran - 250mg in the morning and 250mg at night - we might have to increase his generic Keppra - we will have to play it by ear.

He receives additional PT at a center that is located about 60 minutes away (we pay out of pocket for this therapy) and today the therapist said - get the walker out - he is ready to walk - boy as I read that in her notes - it brought tears to my eyes - we currently put him in a "walker for normal kids" but all he does is go backwards and not forwards - but I think we can put breaks on his medical walker - We will need to get it out and practice.

Currently we are putting new tile down in our kitchen and laundry room and our house is up-side down - our kitchen table is in the middle of our bedroom - our fridge is in the living room - our stove is in the hallway and there is dust everywhere and I mean everywhere - boy will I be glad when this project is done. Since business has slowed down for my husband we have started to breath life back into our current home. We plan on building next summer - our next home will need to be handicap accessible.

I have scheduled an eye appointment as well (in Hudson 60 miles away from home)- It sure is tough to find a doctor that will take on pediatric special needs clients - I haven't been happy with the eye doctor at Mayo since he said he isn't able to help Brextin until he is able to say what he can and can not see - well my son may never be verbal - however I believe glasses might help - We saw the same eye doctor last year in Hudson - he was the original doctor who prescribed the glasses. It sure is tough to decide on what is best for your child when you work with two different eye doctors who take two totally different approaches.

Brextin has been doing wonderful with his eating habits!!

Brextin has been eating wonderful!! He has been eating most of his baby food via mouth - he even has rice biscuits for breakfast - all by mouth! I am so excited to see the new improvements - it started to begin a couple of days ago - I have been praying so hard for him to eat more by mouth and to keep it down - and our prayers have been answered- sure hope he continues to improve!!

Brextin's medical bracelet came today

I decided to get a medical bracelet for Brextin - in case we ever got in a car accident - and I was unresponsive - or if his new school was in need of his medical number or my phone number it would be at an arms reach. The band was about $26.00 - which I didn't feel was to bad. Here is the link http://www.americanmedical-id.com/marketplace/build.php?buildwhat=sportband_jfk It just puts my mind at ease.

So far so good . . .

We have only had two days of the wean - of the vigabitran - 250 mg in the morning and 500mg at night - but so far - we haven't seen any seizures - we are still praying that this wean will go smoothly.

Today we are beginning to wean Vigabatrin/Sabril

Brextin has been on Vigabatrin ever since he was DX with Infantile Spasms at the age of 4 months. The drug has been illegal in the US until just recently - due to possible vision loss - however the FDA has just approved it for the US - however regular eye exams are required and a ton of paper work needs to be filed. Since we couldn't get it in the US we had to buy the drug from Canada which means the drug was never covered by insurance - so we as parents are grateful to be able to spend that money towards other therapies that may help further his development instead. We are looking in to AIT training http://www.aitinstitute.org/ He would be able to receive the therapy in Hudson, WI - which is about 1 hour away - during the Summer while I have off.

Our neuro doctor from Mayo thinks his seizures could be controled without the use of Vigabatrin and has hopes of Brextin only needing one drug to control his seizures - which would be generic Keppra. (currently taking 1ml twice a day) So we are attempting to wean him off of Vigbatrin in the next 3 weeks. He has been taking 500mg in the morning and 500mg at night. This morning he was given 250 mg and tonight he will be given 500 mg- we will do this for one week and then continue to decrease his amount of the drug.

I was grateful to wean him off of toppamax just a couple of weeks ago - and am glad that he will have less drugs in his system -

Our neuro just communicated to me that he will be out the United States for the whole month of February and his colleagues will be covering for him - which scares me - I often do not like to take anybody else's advice other than our main neuro - so it should lead to an interesting month -

He is scheduled for a 24 hour EEG this coming Friday - to see if his brain waves have improved or worsened since the weaning of two drugs. Since I will be teaching - Andy will be attending this visit.

Look at Brextin standing with support!!!

We have had this toy for a LONG time and I have tried and tried to have him hold onto it - but he has never really gripped the handle so I was thinking about getting rid of it - however tonight - he actually grabbed the handle and stood for quite sometime - with a firm grip.

I was nervous at taking the video and the pictures - since he still lacks the balance and could just tip over - but I am just smitten with how long he actually stood for (including bouncing and maintaining balance)- he still hasn't take any steps - with the toy - but hopefully he soon will -

We continue to pray for him to move forward!!

Brextin's brother and his love for broccoli!

I don't post a ton on Brextin's brother - but I couldn't resist this photo - It was his special day at school and he could select any type of food item to bring - and he selected - broccoli - (He looks so proud) We told him when he was little - that broccoli makes you run real fast - and ever since then - he can't get enough of the vegetable - which is odd - since mom doesn't eat a ton of veggies, especially broccoli.

Needless to say - most of the broccoli came back home - since it wasn't a real hit at school - we did however sneak some fish crackers to the teacher as well - just in case :-)

Here is Brextin being active on his Wingbo swing!

Brextin usually isn't that active on his Wingbo swing - but today he was really active - so I shot a video of him. Isn't he adorable!

I also connected with another parent - right here in town - who's son is very close to Brextin's age who also suffers from Infantile Spasms - and they are having a benefit for their son tomorrow - here is a link to their son's story- he is moving forward with his development much better than our son - he is a true miracle! - www.caringbridge.org/visit/nashschult

Just an updated video of our little guy.

Nothing new - I just wanted to add a video - I haven't added any lately -
He had a follow up appointment today because of his bloody ear a couple of weeks ago - but everything checked out - OK

Plus he has been making some strange sounds lately with his throat so I added a video of that as well - I had my husband check with the ear/nose/throat Dr. today to see if it was something we should be concerned about - but she said it wasn't anything on her end. Our daycare provider thinks it is a new sound that Brextin is learning to make and that he is interested in hearing himself make the new sound so he is doing it over and over again. hhmm

We have noticed his two lymph nodes that are under his arms are getting larger as well - but currently no one is alarmed by them - but us.

Brextin's home to stay after today!! Yippie

I sure have missed my little guy - he has now had 80 hyperbaric oxygen dives. We are uncertain if we will plan on doing any more - a lot will depend on if we will see any more improvements. The biggest thing that we have seen is - how much he has improved on his suck - however our birth to three department was working on this prior to the dives - but the oxygen might have helped with speeding up the process - however we are uncertain - he doesn't suck 100% all of the time - but we are hoping it will improve over time and he will no longer need his G-tube.

All is well . . .

I just got word - that Brextin is doing well - last night he was able to sit up and begin to play with his chew toy - then he zonked out for the evening. All I can do is continue to pray that he will remain seizure free today and the oxygen dives will be successful - he is expected to come home to stay this Thursday.

I wonder why certain things happen in life?

I thought we were on a right path with the increase of his generic Keppra to 1ml since - Brextin has been 4 days seizure free - however . . .

I just heard from my relative in Madison and they just mentioned that Brextin just experienced a very bad seizure - lasting about 3 to 4 minutes and that they needed to administer Distat - which is a drug that is given in the behind to help end the seizure. I have been informed - it helped end the seizure and that he is currently just in a daze - if he is unable to snap out of it - he will he heading to the nearest ER -

It just burns me - that I am 3 hours away from him and am unable to do anything but pray. Why is it that my son has to go through so many battles and obstacles - hasn't God figured out that my son has had enough road bumps in his life that he deserves to have smooth road ahead of him.

I am so frustrated that I could place my head in a pillow and just scream!! I just wish I could wrap him in my arms - eeergh!! I HATE these seizures!!!

Family Hope Center in PA - anyone have success?

A parent on my Infantile Spasms list serve mentioned that her son's miracle http://www.caringbridge.org/visit/matthewgleason/journal/1 came from attending the seminars and workshops at the Family Hope Center in PA http://www.familyhopecenter.org/english/conditions/epilepsy.aspx - but it is expensive - the three day seminar - is $615 for one parent - $1000 if both parents attend (It is my understanding the child may not attend this session - so even if I was to attend- I have no idea as to who would watch Brextin) - Here is the agenda for all three days:

First Day:
Introduction – the Staff – Objectives and Goals
Understanding Your Child
The Source of Your Child’s Symptoms
The Degrees of Neurological Disorganization
The Integrative and Developmental Progression Chart
Evaluation and Diagnosis of Your Child
Questions for the Staff

Second Day:
How the Brain Functions
How the Brain Grows
The Principles for Creating an Excellent Program for Your Specific Child
The Foundation of Your Therapy Program – an Integrative Medical Approach
The Vital Importance of Oxygen for Your Child’s Success
How to Improve the Sensory Pathways
Teaching Your Child – the Fundamentals
How to Improve Your Child’s Ability to Learn
How to Improve Your Child’s Coordination
Questions for the Staff

Third Day:
The Vital Importance of Excellent Nutrition for Your Child’s Success
How to Improve Your Child’s Mobility Function
The Importance of ‘The Family’
How to Help Your Child Mature Socially
‘Mastering the Hour’ – Getting the Most Out of Your Day
Parent’s Certification and Comments

You would then pay an additional $3,450.00 to participate in a two-day appointment - Click this link to learn more - http://www.familyhopecenter.org/english/services/Two-Day-Appointments.aspx (Some parents said some insurance carriers do cover this appointment - since mine won't even pay for the feeding tubes to feed our son via g-tube my guess is that they will not approve it)

My husband of course is leery - I have emailed the center to receive some more information - I want to try anything that might help our son - I just don't want to be taken for our money - and given false hope!

Is this the flu or just an upset stomach??

Brextin was seizure free as of yesterday - however the vomiting has returned - He threw up at least 3 times during the day yesterday - and then last night it got intense - he began to get a cough - so each time he coughed - he basically choked and so we were again parents sleeping with one eye open.

We gave him his nebulizer last night (to help with his breathing) - and just gave him liquids this morning - in hopes he will keep it down. My question to you is how long can you keep a bottle of Pedialyte? Out bottle reads Exp 01/11 however it states that you need to use within 48 hours of opening (we used this bottle a couple of months ago) so does it really need to be thrown out?- The bottle is only 1/4 gone - I would really hate for it to go to waste - and really don't feel like running to the store to get some - knowing I have a full bottle in house.

At this point I chose not to use it - to be on the safe side - but did not toss it - I gave him water and apple juice. I sure hope this is a 24 hour thing -because he is miserable - and I mean miserable - Plus he is to head back to Madison to finish up on his last 8 oxygen dives.

Please pray for his health - he needs to fight this terrible/horrible cold!!

Still seizure Free!!

He had no seizures on Thursday, Friday or yet today - it has been amazing!!! We had respite come this morning so I could take a trip to Wal-mart and get some daily items - I am telling you I am loving respite - If you currently do not have respite - I strongly suggest you check out http://www.rescare.com/index.cfm -

A nurse came to our home and did an eval on Brextin- and notified us that we qualify for 5 hours per day - (our Medicaid covers the care worker) We don't use respite as much as we should. At first I was nervous about having a stranger watch our little guy - but once we met - I knew she would take very good care of him - she is actually studying to be a nurse - so luckily we will have her for about 2 more years as she is finishing off her degree. Nursing runs in her family - since her mother is a nurse also.

I haven't been so lucky with the suck - I keep trying - but the little guy only does it when he so desires.

He hits the road one last time tomorrow and will be done with the dives this Thursday - we will then be back to normalcy in our house hold.

Praise the Lord!! NO seizures today!!

I just got a phone call and was told that Brextin didn't even have ONE seizure today - our prayers have been answered!! Oh how we pray for more days like this!! Our relative said that he is really really doing well with sucking - which is wonderful news - still only taking about 8 bites of baby food at each feeding period and then pooling it - but hey - I am so pleased with hearing he hasn't had one seizure today and that he is still doing well with his suck!!

I am so anxious to see him tomorrow!

Way to go Brextin!!

I love RESPITE!!

Our wonderful respite care worker came last Saturday - and was able to watch Brextin along with our oldest son - which allowed my husband and myself a night out. It has been A LONG time that we have been to dinner and a movie - and it was wonderful! We saw "It's Complicated".

I love RESPITE! I love RESPITE! I love RESPITE! I love RESPITE! I love RESPITE!

The number keeps climbing (8 seizures yesterday)

I am sad to deliver bad news - he had 8 seizures yesterday - we have been in contact with his neuro from Mayo and am trying to figure out the next move - we are going to try to put the wean of vigabitran on hold - if at all possible until we get his seizures under control. We have increased his generic Keppra to 1 ml - we started him at .6 ml.

However I have been told he is doing awesome with working on his suck -

I am excited to be reunited with him tomorrow - but will miss my 8:00 bedtime (I have been going to bed the same time that I put my oldest son to bed - and I have been loving it!!) Our relative will then head back to Madison with Brextin on Sunday and return again on Thursday. He will then will have had 80 oxygen dives.

I will write more once I see him this weekend.

5 more seizures as of 3:00 today - EERRGHH! Please make them Stop!!

I just called our relative who is taking care of Brextin and they indicated he had 5 seizures as of 3:00 today. We have been struggling with seizure control ever since we ended Topamax this past Thursday. We have been told to continue to increase his generic Keppra until we have seizure control. He is currently on .8ml so we have increased it to .9ml - I have emailed our neuro to get support - but I got an auto response indicating that he is currently out of town - so I called his nurse at Rochester Mayo and she said she would pass along my concern to him in the morning - and that we did the right thing by increasing his meds to .9ml

My husband wishes we never ended Topamax because we had seizure control and I understand where he is coming from - however there has got to be a different drug that will stop his seizures as well other than Topamax. Maybe Keppra won't be our next miracle drug - time will tell - however we are praying for the seizures to end - and for him to begin to enjoy life and further development.

My other concern is that our neuro wants to wean him off of vigabritan as well - starting in one week - since we only have 3 weeks of the medicines left on hand - We will need to wait and see - I am not ok with a wean if we do not have seizure control.

Brextin had two seizures today - eergh!!

I just emailed our neurologist telling him we are now 100% off of the drug called, topamax. However he is also interested in weaning our son off of vigabritan a.k.a Sabril. So starting in one week we will drop down one sachet of the powder drug until we have no more packets left. (He is currently taking 1,000 mg)

I explained that we are still seeing an increase in seizures - so his plan is to increase Brextin's amount of Keppra (he is actually on the generic version) - until his seizures are under control. Currently he is taking .8 ml.

The past two seizures have made me a tad nervous - both of the seizures he had today - caused him to throw up - but the strange thing is - he is beginning to get a rash on his skin - red blotches are appearing on his face and his neck/chest area- however - minutes later he appears fine as if nothing even happened to him - it is bizarre!

As each seizure occurs I continue to pray to have them stop and never return - hopefully one day - our prayers will be answered!

Can other mom's relate?

Let me begin I love my husband but a situation just occurred about 2 seconds ago - he saw me typing on the computer and made a lovely comment , "I see you on the computer again!" Which makes me feel guilty - however I am on the computer for two reasons:
1) To check my list serves that I belong to - in hopes to connect with other parents about certain topics - maybe it is about drugs, therapies, toys, etc.
2) Update my son's blog -

(I consider both of the above to be my outlet)

Yet he can enjoy himself at our local YMCA to play racquetball - at least 2 days a week - yet sometimes 3 days a week - each time he leaves for the Y - he is gone for at least 4 hours each time -

But yet he can complain that I am on the computer - "REALLY!!" If I was to add up all of my minutes as I sit on the computer - it would come no where come close to 8 hours.

Can anyone else relate???

My free time is spent all on my son - and if I leave to do some shopping - I hear - how could it take you that long to shop - really!!!

Yet he tells me that I need an outlet - Is it a guy thing?? I am beginning to lose it!!

Brextin's home for the weekend :-)

Today was a rough day - out of no where - Brextin threw up - my husband asked me if he had a seizure - and I don't believe he did - He was in 4 point rocking back and forth and then all of a sudden his lunch came right up - so I quickly scooped him up and gave him a bath.

We are still working on his suck - he is sucking about two times per meal through a straw (not even a special straw - just a "normal" straw - which is major progress.

A couple of weeks ago I weighed him and he weighed around 21 pounds and today he weighs 23 .7 pounds - I wonder if the Topamax had anything to do with him not gaining any weight.

As of today - he is totally OFF Topamax - which is a wonderful accomplishment - gosh I hated that drug - it has worked against his seizures - but I think it has influenced his appetite and had other bad side effects. He was on the drug for over 2 years.

He will be heading back to Madison tomorrow and will have another 10 oxygen dives this week - then only 6 more dives will remain.

Brextin is all better!! We are back to do oxygen dives :-)

We went to see an ear/nose/throat specialist this morning and had wonderful news - it was exactly what was stated by the second person who just left a comment for us - it was granulation that had formed inside his inner ear - which got infected and caused it to burst- he is now on ear drops and we have been given the go ahead to complete the rest of his oxygen dives.

Once he got home yesterday and I saw how bloody his ear was - I was very concerned - but our prayers were answered and he is fine!!

Once again I will struggle on being away from him - I have never been separated more than 24 hours from him - Thank you for all of the prayers - they were answered!!

Brextin's coming home early! I am saddened!

I got a phone call today at 3:00 indicating that Brextin would be coming home tonight and not finishing any more oxygen dives this week - he has blood again draining from his ear - and the doctor thinks his tube might have ruptured - not his ear drum - but the tube itself - we have an appointment tomorrow at 9:00 with our local doctor and then we might have to see an ear/nose/throat specialist -

I tell you - we just can not get a break - He is not showing any signs of discomfort which is a positive thing - we will just need to wait and see - at tomorrow's appointment -

Please pray that everything will work out - If we do not continue the dives this month - we will probably need to wait until June, July or August.

This will be a challenge!!

I have NEVER been away from Brextin for more than 24 hours and now I will be away from him until Friday- (6 days) I just did not want him to leave today - I know he is in good hands with my relative while receiving hyperbaric oxygen treatments- it is just that I am his care taker 80% of the time - and I will feel empty while he is gone.

We both attended church today and prayed and prayed and prayed some more in hopes of further development along with safe travels - it is tough knowing we are parents of a two and half year old - and basically the only thing he is capable of doing is sitting up -

He did the other day remove his winter hat three times off the top of his head - it brought tears to my eyes - seeing him simply take off his hat - it is the littlest accomplishments that make me smile ear to ear - I can only simply hope and pray that we will see more accomplishments down the road!

Bath time with the neck ring

This is the neck ring that we use in the tub as well as the swimming pool - it sure has come in handy while at the hotel.

Playing peek a boo - hmm is he really playing peek a boo with me?