Brextin's Hope

We have two trikes that allow us to push him - but they are not intended for special needs children so I need to figure out a way to adapt t...

I am always looking for tools to help enforce better sounds for Brextin - and ran across these tools - I plan on asking our birth to three ...

Today was the first day of no Vigabitran - currently no seizures - yet we usually don't experience any seizure changes until day 4 or 5...

Once we increased his generic Keppra to 3ml twice a day - we haven't seen any seizures - however he is very very sleepy. He actually sl...

We are now down to 250mg of Vigabitran (he was on 1000mg)- we began this dosage as of Saturday and the poor guy has been having too many se...

We will be touring the school in which Brextin might be attending today - however I was thrown for a loop the other day - when I heard that...

I broke out!! I got out of the house without the boys!! I thought to myself where will I go - then it occurred to me I better head to the ne...

We just began our Winter break - we only get a Friday and a Monday off - but I am trying to make the best of it - we went to the eye doctor...

We are all doing much better - and luckily big brother never got sick -:-) which was a bonus. We will be on a Winter break this week and as ...

My husband predicted that I would get the bug on Saturday - and wouldn't you know - at 2 am - I was throwing my brains up - as it was le...

It is nice to be back home - from a two night hospital stay.

I think they want to be certain - so we are staying another night. He is receiving fluids in two ways. One way is by an IV and the other one...

We went to the ER last night around 10 pm and got moved up to a room around 4:00 am - and it is currently 7:00 am - I might have slept for a...

Here are pictures showing how big Brextin's stomach is - the video located below was - taken to see if he was in pain while pushing on...

The good news is that we haven't seen any seizures since Saturday - which is fantastic - the bad news is that he is unable to keep any f...

Brextin just came home and currently he has only had one seizure this morning - lasting about 20 seconds - he is currently taking 3ml of ge...

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 th...

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 a...

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 g...

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 ...

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 w...

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...

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 unt...

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 w...

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 sele...

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 adorab...

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...

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 wi...

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 fo...

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 . ...

A parent on my Infantile Spasms list serve mentioned that her son's miracle http://www.caringbridge.org/visit/matthewgleason/journal/1 ...

Brextin was seizure free as of yesterday - however the vomiting has returned - He threw up at least 3 times during the day yesterday - and...

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 ...

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 ...

Our wonderful respite care worker came last Saturday - and was able to watch Brextin along with our oldest son - which allowed my husband a...

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 t...

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 wit...

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 so...

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 commen...

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 ...

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 j...

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 - h...

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 t...

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.

Today he ended up throwing up again while in the chambers - however he never had a seizure - so it was unexpected - but this time - I was pr...

Working on balance -

Here are some photos of us inside the oxygen chamber - he usually chews on thera-tubing - while inside. If we decide to do more dives after...

This is a short video as to what the oxygen chambers look like on the inside and the outside.

The bad thing is that Brextin had another seizure while in the middle of the dive - (but luckily he did not throw up) The seizure lasted a...

He had his first seizure today in the chamber (during this 40 dives) - he was in the middle of a nap and out of no where a seizure occurred ...

What does one get a child who has extreme needs for Christmas? Here are some of the items that Brextin received this year . . . Pete the tal...

We had a wonderful Christmas - it was a real fun period for me - my oldest son has been talking so highly about Santa and was very excited f...

I was very nervous on leaving tomorrow -due to the weather report - so I canceled our oxygen dive that was scheduled for tomorrow and drove ...

I just got these from the oxygen center - they were taken in June during our first 40 dives. He still is small enough to allow his arms and ...

When I looked out my hotel window - it looked like a winter wonderland - but I made it to the center just fine - it stopped snowing here aro...

We had a wonderful day - no problems - This is our schedule: Our first dive is in the morning - then we go for one hour of therapy (either s...

It has been a real struggle to find gifts for Brextin this holiday season - I ran across this repeating parrot and thought it might be hel...

I applied to possibly receive some of Ellen's Big Stimulus Package money, our family sure could use some this Dough- vember :-) It woul...

We have made the three hour trip and will begin our next 40 oxygen dives starting tomorrow - I am so anxious to try another 40 dives and are...

It seems as if everything we do to try to better the life of our son - seems to be expensive. As I have blogged before - Brextin is only al...

I finally have Respite!! I have had help the past two weeks - and I really enjoy Brextin's personal care worker - she is studying on bei...

Here is a photo of Brextin and Santa - Plus here is a photo of him and his dog - it doesn't need a switch to be activated - all you ne...

We have high hopes he will be able to walk using the walker that we are borrowing from Elijah http://elijahland.com/ very soon - but in the...

We will be leaving for oxygen dives this Sunday - I am praying for good weather - we will be doing another 40 dives at the same center that ...

Today we attempted to get photos of both of the boys as well as a family picture - I am unsure as to how it went - however, I am excited to ...

I am been hoping I could get a good video of him on his new Wingbo swing - but by the time we get a chance to use it - he is ready to go to...

If you have a second - I beg you to view this video/song - it is so touching - that it brought tears to my eyes - I have never been on faceb...

We discussed weaning Brextin off of Topamax - which we started yesterday - this is our schedule to begin to decrease his medication: * 50...

I have nothing but good news to report in regards to Brextin's MRI - our Dr. indicated that today was a day of good news - I don't ...

We would like to wish everyone a very happy full filling Thanksgiving!! Today was the first day that we have begun to wean Brextin off of T...

His Wingbo arrived today - but it was 8:30 pm by the time we put it together - and so he was only able to swing for a couple of minutes bef...

I am worn down by the biggest cold!! It started out with a dry throat then I began to loose my voice - then a cough started - and now lovely...

Brextin has begun to grab the spoon as we try to feed him - or often he decides to place his fingers into his mouth while it is filled wit...