Looking into an adaptive bike for Brextin's 3rd birthday

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 them. I am looking into pedal adaptive that would allow us to Velcro his feet to - so when we push him - his legs would actually spin - but at this website http://www.flaghouse.com/Adapted-Tricycle-Accessory-Foot-Pedal-Attachments-item-5875 they want $78 - are you NUTS!! Why is it that everything that is needed for our children costs so much money. I am seeking out my relatives to see if anyone can be creative - and make them for us cheaper -

Another website that looked promising is http://www.amtrykestore.org/ They might even donate a bike to your special needs child if a therapist/doctor refers you and there is a financial need. They offer different accessories that might be helpful to adapt one of his bikes to fit his needs.

I also went to amazon.com and found these bikes as a possibility:
http://www.amazon.com/gp/product/B002OHD2PC/ref=s9_simh_gw_p200_t1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846 (I really like this one)

http://www.amazon.com/gp/product/B002MOXRTI/ref=s9_simh_gw_p200_t2?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846

http://www.amazon.com/gp/product/B002ZZ1T0S/ref=s9_simh_gw_p200_t3?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-3&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470938811&pf_rd_i=507846

http://www.amazon.com/gp/product/B001E6OUZK/ref=s9_simh_gw_p21_t1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-4&pf_rd_r=1RXFPZG6K00MG5SZ8D62&pf_rd_t=101&pf_rd_p=470939031&pf_rd_i=507846

http://www.amazon.com/Little-Tikes-615221-Smart-Trike/dp/B001UE85DO/ref=sr_1_1?ie=UTF8&s=toys-and-games&qid=1267372545&sr=8-1 (I really like this one)

I allows find it tough to find gifts for our special little guy - but I think this would make a wonderful third birthday gift - so when we go on walks he won't have to be in a stroller or his wheelchair. Can anyone else recommend any other suggestions?

Speech tools? Has anyone used these?

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 speech therapist - but am wondering if anyone has used these?
A tongue lateralization:
http://www.dysphagiaplus.com/talk-tools®-tongue-lateralizationelevation-tool-p-596.html?osCsid=yzrixzbjonpdxnmu

Tongue lifter:
http://www.dysphagiaplus.com/tongue-lifter-p-409.html?osCsid=yzrixzbjonpdxnmu

Tools that help with sensory-motor stimulation at the cheeks, soft palate, and pharynx.
http://www.dysphagiaplus.com/oralight®-oral-motor-exercise-system-p-206.html?osCsid=yzrixzbjonpdxnmu

Jaw exerciser:
http://www.dysphagiaplus.com/talk-tools®-exerciser-p-600.html?osCsid=yzrixzbjonpdxnmu

Lip gym:
http://www.dysphagiaplus.com/the-lip-gym-p-242.html?osCsid=yzrixzbjonpdxnmu

First day of no Vigabitran - send us a ton of prayers!

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 into the med change. He is still taking 3ml of generic Keppra in the morning and at night. The only big thing we have experienced are the blow out diapers - he has massive blow outs - we are uncertain if it is due to the meds or if it is because he has a terrible cold. Whenever he gets a cold - he gets them bad - each time he coughs - it is as if he is going to throw up - at times he does throw up and other times he doesn't- his eyes only water. That is the biggest thing that I hate - is when his left eye begins to shed a tear. It seems to be quite often - yet I have not idea why the tear comes down only one eye. I just hope he isn't hurting inside.

A miracle did occur today - I got out and went to the spa - I had a 30 minute massage, sat in a chaise lounge, listened to their waterfall, drank a glass of water, read some magazines, and then stepped into their steam shower and then headed back to reality - but boy was it 2 hours of being in heaven!!

So far so good - by increasing generic Keppra

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 slept through the night - which is a miracle in itself- he usually wakes up and begins to babble a number of times throughout the night.

Too many seizures to count --uurgh!!

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 seizures to keep track of. (Yesterday he had over 5 - but today our daycare provider told us she lost track - since he kept having more and more) We have been giving 2.5ml of generic Keppra and just upped it to 3ml in hopes of his seizures being controlled.

I just hate seeing him have these seizures over and over - I sure hope the seizures can be controlled by using only generic Keppra.

Today is the tour . . .

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 the district might think he is to medically fragile and he might get home treatment instead - Plus they are unsure if he will actually be attending the school in which I will be touring today - he might be going to a different school instead. (So I am hoping that today is not a waste of my time)

We haven't had his IEP meeting yet - this is where we will discuss his schooling needs - I just get frustrated not knowing where he will be going to school or what he will be taught. One minute I am ready for him to go and then other days I still can not believe my 3 year old will be going to school (since he only functions at a 6 month old).

I broke out!!

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 nearest bookstore that offers free Wi-Fi so I could work on a graduate class that I am currently enrolled in. (Word 2007) I have to take two classes within the next couple of years in order to renew my teachers license.

If I have sometime I would like to explore Facebook - I find it to be quite funny - I teach technology classes - yet have never been on Facebook - I just haven't had the time. I find it tough just to find the time to update my son's blog or check my personal emails.

Winter break

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 yesterday and he highly suggested we go back to having Brextin wear his glasses (we have another eye doctor who is against him wearing them) - this doctor really thinks it will help him in the long run - and said he was pleased with how he responded to some of his tests- and thinks there was improvement -

After the appointment I took my oldest along with my mother to ChuckE Cheese's - he had a blast and I must say so did I- some of the games were pretty fun. We use to have a ChuckE Cheese here locally about 15 years ago - but it went out of business so we had to travel 80 miles to locate the nearest one.

Then when we got back my mom offered to keep our oldest for a sleep over - so we had the night alone with Brextin - we watched two movies and some of the Olympics and were able to sleep in a little.

Then my husband escaped to the gym for his 4 hour "away" time - still waiting for mine - which never comes - however while he was gone - I re-arranged Brextin's bedroom and wanted to make more room for our exercise mats that we keep downstairs - I am hoping to do more therapy upstairs - and I thought if I moved up some of his mats I would be encouraged to do so. Plus I thought his walkers would move more smoothly on the mats rather than the carpet. We are hoping that this will be the year that he will begin to walk - our fingers are crossed and our prayers have been said.

Today is the day that we dropped his Vigabritran down to 250mg - he use to be on 1000mg - and currently he has been handling the 500mg just fine - so we pray that the wean continues to do well.

Earlier this week - we had a scare - we went in to wake Brextin up in the morning - and found him laying in a pool of blood by his head- we found out he bit his tongue - it was quite severed - right in the middle - the strange thing was that he wasn't in any pain and it didn't bother him - I still am amazed as to how it happened and why he wasn't in pain.

We all are doing much better!

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 always it will be filled with appointments for Brextin. We will be visiting an eye doctor in Hudson and our family will be receiving a tour at a school in which Brextin might be attending this September.

I got what he had - and it isn't ANY fun!!

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 leaking from the other end - I feel as if a bus has just hit me and is laying on top of me. I have been drinking a ton of juices and even Brextin's pedelite drink - it isn't as bad as I thought it would be - I am mixing it at times with juice. I am afraid to eat anything yet - but maybe today I will be adventurous.

Brextin is still not 100% well - but is doing much better - he has been having about one messy diaper a day and been throwing up about twice a day. He is quite tired as I am as well. We continue to pray that big brother doesn't get this terrible illness - it takes you down for the count. All throughout this illness we haven't seen an increase in seizures which is a plus - he did have one yesterday - but we did decide to continue his wean of Vigabitran - so currently he will be on 500mg - lately he has been on 750mg.

We are back home :-)

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

He is feeling better but we are still at the hospital

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 is a drip of electrolytes via his g-tube by a pump - I am hoping to begin purred foods tomorrow morning by mouth.

Our hospital stay has had its ups and downs - on the night we arrived the admitting nurse was asking me to confirm his diagnoses. He first said epilepsy - and I said yes - then he said microcephaly - and I said yes - then he said mental retardation - I lost it - and I mean I LOST IT - tears just rolled down my cheeks! In our almost 3 year adventure with our son - he has never been referred to being this ugly word - and I quickly voiced my comments to this young nurse - I could not believe he just said that ugly word to me - he then stated he was only reading what was stated in his medical charts - I gave him a quick lesson as to what other words that could have been said in place of that word - such as developmental delays, challenged, etc.

The odd thing is - just before I went to the hospital I read an article in our local newspaper health section that stated this the medical dictionary is changing - . . .WASHINGTON (AP) -- Don't say "mental retardation" -- the new term is "intellectual disability." I was going to clip the article and send it to the ER nurse. I fully understand that my son does have his challenges ahead of him - however I never want that word associated with him. Here is a link to the article http://www.washingtontimes.com/news/2010/feb/10/changes-proposed-diagnosing-mental-disorders/

One of the good things that has come out of this visit - is that we were visited by a variety of different staff members who remember Brextin when he was here in the past (when he was around 9 months old) and they were interested in being updated in his condition - so we were blessed by some old visitors.

We are still at the hospital -

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 about 1 hour. I am exhausted - I had to make sure I was awake around 6:00 am to call into work and to type up lesson plans for the sub. Plus since I didn't grab my phone charger - I am without a phone since it died - it just bothers me - to know how much we rely on technology and once it is missing - the world seems to come to a halt.

I was unable to log into the computer in the family waiting room so I am currently using a nurse's computer - and am glad that I am able to update his status.

They have been taking blood work and said his potassium is on the low side so they have started an IV - his vomiting has stopped but it is coming out the other end - and they are total blowouts - and since I am alone - I think I stopped counting the dirty diapers around number 8.

I plan on checking to see how things are at my home - I am hoping my husband is feeling better as well - and I sure hope our oldest as well as myself do not get this bug.

Brextin's stomach (for Dr. Lisa)

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 it - to see if there would be some type of infection. We are on the way to the hospital - just to be on the safe side.

Brextin and Daddy are down with the flu - YUCK!

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 food down today - gratefully he has the G-tube which allows us to flush his system with fluids at least. His daddy is down for the count as well - this doesn't happen to often (he thinks he is invisible) - but he is out just like Brextin.

I even canceled his therapy appointment tomorrow - I am hoping to take my oldest to Chaos Water park tomorrow - since they have a promotion in the month of Feb - that every Thursday the park is FREE - usually it costs $20 per person if the child is over 3 years of age - so we are taking advantage of the promotional - that is - if we both remain healthy.

If he remains seizure free and gets feeling better - we will decrease his Vigabitran again this Saturday. We put the wean on hold - since he was beginning to have to many seizures. He is taking 250mg in the am and 500mg at night.

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?

Here he is sucking his thumb!!

Today's report on his dives

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 prepared and brought a bib in with me this time - see I am getting smarter as I get older.

The second dive was wonderful - no throwing up and no seizures -

We will be heading back home tomorrow after his two dives and his last therapy session - and then on Sunday - another one of my relatives will be taking him to his dives and therapy appointments - as I head back to work.

Once I hear anything from my relative - I will try to post - and keep everyone updated -

Thank you so much for your support - it is needed as each day seems more and more stressful as we still do not know what his future holds for himself or our family. Right now we just love him for being who he is and continue to pray for further development.

Therapy while in Madison

Working on balance -

Pictures inside the oxygen Chamber

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 these 40 - he will probably have to get his hood fitted to fit only around his neck. It has been nice to allow him to place his hands inside - it keeps him somewhat entertained.



http://secure.cartsvr.net/catalogs/catalog.asp?prodid=1114128&showprevnext=1 Here is a link for the thera-tubing - we usually get it from his therapist that we see in Hudson, Wi.

A tour of a Hyperbaric Oxygen Therapy Chamber

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

A bad thing and a good thing

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 about 1 minute.

One thing that you need to be cautious with while doing oxygen dives are the ears - and this morning I was concerned with one of Brextin's ears - one ear has been draining more than usual and there was even a red discharge yesterday - so I was concerned that one of his ear drums had ruptured (however he wasn't showing any signs of pain) - but I had the doctor look at it and he said the ear looked like there was some puss in the ear - however it was draining properly and it shouldn't bother him during the dive - so we went ahead and did this mornings dive.

The good thing - is that today during speech - he started to suck from a straw - check out his video!! Way to go big Guy!!!

Brextin had his first seizure in the chamber today

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 - his eyes popped right open and you just know that it is coming - the worst part - was that he threw up as well - and since I didn't have the bathroom sink with me inside the chamber - we had to wait it out - I just asked our technician to have towels ready for us when we came back up from our dive.

You can only imagine the mess he made in his hood- I just felt so helpless - I couldn't do anything until we were done with the dive- but the second dive went fine -

However our therapist that we saw today for Craniosacral (CS) therapy said she was able to release a lot of tension in his body and head. I just wish we had a therapist locally that performed CS - the price just is a shock to me - it costs just as much as an occupational, physical or speech session. ($90 for 60 minutes) When we see the therapists in Hudson WI - each one of them are trained for CS therapy - but they are still 60 minutes away.

Here is a list of Brextin's Christmas gifts

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 talking parrot - it repeats everything that is said - it isn't crystal clear - but it is repeated in your very own voice - see video located below http://www.shopgadgetsandgizmos.com/product/3731/

Chuckle Buddies - Motion Activated Rolling Laughing Dog Puppy
http://www.amazon.com/Chuckle-Buddies-Activated-Rolling-Laughing/dp/B002SZ2Y90/ref=sr_1_1?ie=UTF8&s=toys-and-games&qid=1262043680&sr=1-1 (I found this at the mall - it is quite cute - ours will roll when there is any type of sound - such as a clap or a voice) I don't think this is the exact one - but very similiar - our rolls and then rolls the other way - (I bought this in hopes he would be able to track it with his eyes) http://www.youtube.com/watch?v=TkXeYWn4xaY Here is a video off of you tube.

Chewable necklaces - http://pacificpediatricsupply.com/cart/index.php?main_page=product_info&cPath=8_29&products_id=852 and a bracelet.

Chewlery Soft Elephant Necklaces - http://pacificpediatricsupply.com/cart/index.php?main_page=product_info&cPath=8_29&products_id=780

Gripper Rattle - http://www.amazon.com/Tolo-86280-Gripper-Rattle/dp/B00000IU35/ref=sr_1_20?ie=UTF8&s=toys-and-games&qid=1262043458&sr=8-20 (He really shakes this toy)

Tolo Activity Play Cube http://www.amazon.com/Tolo-89360-Activity-Play-Cube/dp/B00000IUBL/ref=sr_1_26?ie=UTF8&s=toys-and-games&qid=1262043458&sr=8-26

Back in Mad-town - hoping for success!!

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 for the big day to arrive - we even hung a "Santa key" on our door knob http://www.sealedbysanta.com/Product_Catalog_13.htm - left of course cookies and milk for Santa (he actually even made the cookies) and we even left carrots for the reindeer -

However the best moments came when we introduced the book called, The Elf on the Shelf - http://search.barnesandnoble.com/Elf-on-the-Shelf/Carol-V-Aebersold/e/9780976990703/?itm=1&usri=elf+on+the+shelf Since I was going to be gone about 5 days before Christmas I asked my daycare provider to read the book to him and to go about hiding the elf each and every day - boy did Brayden get involved with this activity - he named the little elf - Frisbee - I picked Frisbee up when I got back from Brextin's oxygen dives (Adults can touch the elf - but once a child touches it - it looses it's magic) - and Brayden's eyes lite up knowing that Frisbee was going to spend the the next couple of days at his house - we even had to bring the elf over to Grandma's house on Christmas Eve. I highly suggest if you have a child who believes in magic - you have to check out this book - it was a ton of fun!!!

Brextin has been doing well - we did see two seizures - over the past 4 days and am hoping we won't see anymore -

I will be doing 8 more oxygen dives this week along with Craniosacral therapy and his regular therapy located here in Madison - then I will switch with another family relative who will help finish off with the rest of the 20 odd dives - while I head back to work.

We continue to pray for success for our son's development -in hopes he will move forward and improve on some of his milestones.

I made it home safely!!

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 home tonight to beat the storm and I thank the Lord that we made it home with no problem - when I left Madison around 3:00 freezing rain was falling but once I hit WI Dells the weather was fine -

We will add one more oxygen dive on to his schedule in January -

It is comforting knowing I will be able to enjoy Christmas with my family near -

Merry Christmas everyone!!

Brex in the HBO hood

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 a toy to be inside the hood -

Another good day - but bad weather!

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 around 3:00 just as our second dive was ending. My dad called me today informing me of the weather report for the upcoming days - it doesn't sound good - but time will tell - I want to enjoy Christmas with my oldest son but I am also not going to risk our lives - and especially won't be able to make it if they close down the highways - we will just have to wait and see -

The oxygen center mentioned that if Madison gets hit as hard as they claim - their center won't be open either on Thursday - they will inform me on Wednesday if they plan on being opened or not. But to me - it sounds as if Thursday will have better driving conditions than Wednesday unless the rain begins to freeze.

I hate to say it but - technology might be on our side - if all else fails and I am unable to get home - I did bring my web camera with me and I could use skype to connect with my family - the downside is that both of my family members (my mom and my husband) do not have laptops - but they do have web cameras on their desktops - so if all else fails - I could have my son open up each gift while he sits in front of the webcam - so I won't miss any memories - however I really want to enjoy helping him make a plate of cookies and milk for Santa and to leave a key on the front door for Santa as well - since don't have a chimney :0)

As for our dives - both dives went well - when I say this - it means no seizures occurred - which I am always concerned with - especially since we are still weaning him off one of his seizure meds . This Thursday - is the day that we get to remove two more topamax pills from his daily meds - He had physical therapy yesterday and speech was today.

A wonderful first day of dives :-)!

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 speech, physical, or occupational - since our insurance won't cover the sessions - we can only afford one hour a day) - then we both eat lunch - then we do another oxygen dive - then our day ends (however tonight - we went swimming at our hotel when we got home)

Our schedule isn't as busy as it was the last time we were here (since we did 4 hours of intensive therapy each day)- but it is still very busy - as we have more time on our hands this time - I am filling it up - by having him walk in his walker, swing on his wingbo swing, or rock back and forth in 4 point.

I am very nervous on driving back home this Thursday - a big snow storm is approaching and I can not leave until he has at least one oxygen dive. It is suppose to have a weathery mix - which consists of freezing drizzle, snow and rain. Anybody who knows me -knows I hate to drive on snowy roads - especially with a baby on board!!

Here are some photos and videos from our first therapy session.

Brextin's talking therapy parrot - his first Christmas gift

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 helpful with speech - currently it has been working well - once he says something (or makes a sounds) - the parrot bird repeats it - I got the toy off of ebay and the quality of the repeat isn't always 100% but it beats me trying to repeat everything he is trying to say.

Check out this video:

We have applied for stimulus money from Ellen DeGeneres

I applied to possibly receive some of Ellen's Big Stimulus Package money, our family sure could use some this Dough-vember :-) It would be a wonderful surprise if she was to show up during one of his oxygen dives. http://ellen.warnerbros.com/show/respond/?PlugID=234

I just watched a clip of Jenny McCarthy discussing the added benefits of oxygen treatments with Ellen via You Tube - so I know Ellen is aware of the benefits - the stimulus money could help us with payment of the treatments and possibly allow him to get his intensive therapy program that is suggested to go along with the oxygen treatments - we are unable to afford the $9,000 price tag of intensive therapy. Here is the video of Jenny and Ellen http://www.youtube.com/watch?v=mUndbmAzPqs or possibly we could even get a portable oxygen machine to use at home :-)

I am sure there are a ton of people who submit requests and I am only one of many - but we certainly can however dream!!! Happy Holidays!

We are HERE!!

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 praying for success -

Fianances - do other families struggle?

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 allowed 40 sessions of physical, occupational, and speech therapy a year - and that is combined - which means he only qualifies for - 10 sessions of OT, 20 sessions of PT, and 10 sessions of ST - until we have to pay out of pocket(each therapy sessions costs us $100) - which totally disgusts me - knowing that we have a script from a doctor indicating he really needs more therapy.

He does as well receive birth to three services - but those services cost us as well - we have a monthly pro-rated rate. The therapy sessions are starting to add up - on top of it - we are on our way to try another 40 sessions of oxygen treatments (which are not covered by insurance either) The first time we tried oxygen treatments - it cost us $4500 - this time the center has a deal for those who are returning patients - and we only have to pay $2000. Then of course since the center is located 3 hours away and it is required you do two dives a day for 4 weeks straight - we have to stay in a hotel - which is another $2500 in added costs - Money money and more money - it is all very frustrated -

Most families do not have to spend their hard earn money on therapies - they actually get to take vacations or on toys for themselves - then of course my husband kept me grounded the other day and said we will need to probably back off on some of his therapy treatments knowing a handicap van is in our future- lucky us - I just try to stay positive and continue to pray for further development - Please join me in more prayers and hope for success.

I am getting very anxious for our trip to Madison again - I will continue to post - if we are lucky enough to see any more benefits from his oxygen therapy - (the last time we did the oxygen treatments we did an intensive therapy suit program - that involved 4 hours of therapy each day - and actually our insurance paid for all $9000 of the cost - well not really - I am still waiting for a refund - and it has been over 6 months - but since my school district changed insurance companyies - there is no way that the new insurance company will cover the intensive therapy program - which totally disgusts me knowing that there proven records that most kids see added benefits with the intensive therapy program. I have fought our new insurance company and they will not budge - I truly hate the added financial problems on top of trying to raise a child with extreme needs. Peace be with us!

I finally have Respite and our care worker is Awesome!!

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 being a nurse and does a wonderful job with Brextin -

The one night that I struggle with is the night in which - my husband goes to the gym - there just isn't enough time to bath both kids, cook dinner, and feed both kids and then actually spend some time with each one and by having a personal care worker allows me to actually sit and take a breath!! I am truly in love with the fact of having an extra set of hands to help me out!

Here are some new photos

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 need to do is touch his back and he wags his tail and barks - it really is an adorable toy.

Here is Brextin walking backwards in his new walker -

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 meantimewe are trying this walker - but as you can see he is already too big for it - but it has better support around his waist and I like the fact that we can set items on his tray.

Hyperbarics here we come!

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 we went to in June - we will also be going back to the same therapy center for his OT, ST, and PT. Since we will be paying out of pocket we will only be doing one session a day - instead of the 4 hours a day as we did over the summer.

Wish us luck!!

Family photos - Forever Photography

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 get the proofs back - we had the same photographer who took pictures of Brextin before all of his troubles occurred - she has even posted some of his photos on-line - click here to see photos of him when he was only 2 months old - (about 5 days after these photos were taken - he was admitted to the hospital at Marshfield and all of his troubles surfaced) http://foreverphotographyonline.blogspot.com/2007/08/baby-brextin_06.html

Wingbo - Brextin on his new swing

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 bed - so here is a video of him - but I am hoping to get a better video of him this weekend - currently he is also struggling with another BAD head cold - the poor guy just not get a break.

The Life That's Chosen Me - this is a MUST see!!

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 facebook so I was glade I did not need to be a member to view it - this link was sent to me via the list serve that I belong to on Yahoo.

http://www.facebook.com/video/video.php?v=1235736451701&ref=nf

Written by Karen Taylor-Good and Lisa Aschmann and performed by Karen Taylor-Good.The album "The Life That's Chosen Me" is available for organizations to use for fund raising needs. http://www.harmonizingwithhumanity.com/

FYI - I see my comments are not able to be seen or written - but when I googled the problem - I noticed others are having the same trouble and it states that this blog site is checking into the problem. Hopefully the comments will be back and up soon -

Medications - being decreased

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

* 50 mg of topamax in the morning - and 75 mg at night (.4ml of Keppra twice a day) for two weeks & 1000mg Vigabatrin
* 50 mg of topamax in the morning and 50 mg at night (.6 ml of Keppra twice a day) for two weeks & 1000mg Vigabatrin
* 25 mg of topamax in the morning and 25mg at night (.6ml of Keppra twice a day) for two weeks & 1000mg Vigabatrin
* (No more topamax) and .6ml of Keppra twice a day & 1000mg Vigabatrin
* If we see success our Dr. plans on beginning to wean him off of vigabatrin as well -

His plans are to fully control his seizures with only one seizure medicine which would be Keppra - I am so excited to attempt to remove medication from his system in hopes it might be hindering his learning - only time will tell.

We have been blessed with great news!!

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 think I ever have heard him say that (I am so relieved to hear this) - he stated that there appeared to be nothing wrong with his brain appearance - in the past his MRI's have shown some extra fluid surrounding his brain - and currently the fluid looks to have improved which is a huge plus. Plus his white matter myelin appears to be getting thicker - this is needed in order to send messages to the learning part of the brain - which is another big plus.

All in all - he stated that today was a day of good news and that everything looked positive - however it appears as if Brextin is progressing on his own schedule - and not on the "normal" progressive schedule - but the good news is that he hasn't regressed and he does continue to work hard to move forward - thank you Lord for our prayers have been answered!!!

We could not have asked for better news! Praise the Lord - Amen!!!

Happy Thanksgiving!!!

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 Topamax - he is getting one less pill of sprinkles a day (50mg in the morning and 75 mg at night) - and have moved his Keppra seizure drug up from .2ml to .4 ml.

Tomorrow is the day of the MRI - my mom and dad will be joining me tomorrow for support instead of our wonderful daycare provider - since my mom is still recovering from a total knee replacement - I was unsure if she would be willing to come - but since my dad will be joining us - he will be able to push her in a wheelchair while we venture onto our appointments - I am hoping Brextin will sleep right through the MRI so we won't have to sedate him.

I am still fighting the cold - I was put on a 5 day anti-biotic but the side effects have been to strong for me that I do not think I will be continuing the doses - last night my whole arm fell asleep, my heart began to race, I got severe stomach cramps, and I began to get real dizzy. I just wonder if my son ever experiences some of these unpleasant side effects due to his many medications that he has been on throughout his life. I have found it to be quite scary not having total control over your body due to medications.

Please continue to have our son in your prayers as we have his MRI procedure tomorrow as well as the results.

Again hope everyone has had an enjoyable holiday - and we are very thankful for our family and friends.

The Wingbo has arrived!!!

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 before my husband told me to put it away - luckily we will be on vacation this week so he will be able to enjoy it more - later this week - once I get it adjusted to fit him - I will take a video of him and post it - I am so excited for this swing - even our birth to three therapist is thinking of buying one for their department - Here is their website http://www.wingbousa.com/index.htm I just could not justify the $219.00 not knowing if the swing would be beneficial to him so I was so excited to find a honest seller on Craig's List for only $60.00. Thank you thank you thank you to Kathy!

YUCK colds!!

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 mucus has moved in - it has been a very rough week - I even took a day off of work - which I never do because I have to use all of my sick days for my son's appointments - The worst thing is - that Brextin has the same cold - we took him to the doctor but they told us we have to let it take its course - he and I keep waking up in the middle of the night just coughing and coughing and coughing - and with Andy hunting - it has even tougher to stay strong -

I am hoping that Brextin gets healthy soon - because he is scheduled to get a MRI next Friday - (the reason why this is scheduled - is because our neuro doctor thinks something has structurally changed in his brain and wants it confirmed - his last MRI was done when he was around 4 months old at the start of all of his health issues) which happens to be a vacation day for me - I am praying for no scary news - I am debating if I take a handicap service van to Mayo or I go with my day care provider - who has been a HUGE support system for us - I do know that I am in no means ready to do it alone - in case there will be bad news. Andy had asked me to postpone it since he will be hunting but he too has missed a ton of work due to Brextin's many doctor appointments - so I think it is best that I complete this appointment on a vacation day.

Please pray for our son as he receives a MRI on the day after Thanksgiving - and help prove our neuro doctor wrong and that everything has remained the same and everything is going to be ok - as he pushes forward to further success on his development.

Here are some great photos of Brextin eating!

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 with food and then we end up with food everywhere - in this photo Brextin was eating the pureed meat dinner - which ended up all over his face.

In the other photo - Dad decided to try to feed him noodles and I was quite impressed on how well he played with them and then placed them into his mouth - he didn't end up eating a ton of them - but it was nice to see him play with his food - I thought I would never say that.

ooh ya - how do you like his new hair cut - it is the shortest we have ever had it - I miss his curls on the top - however they should grow back shortly.

Here is a video of him with the noodles . . .