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Monday, March 29, 2010

We won - we won we won!!!

We won a promotion through a local radio station. You had to submit in 95 words or less - why we deserved a "Get Away" I had a hard time limiting our story to 95 words. The "Get Away" includes two round trip tickets to Chicago - and a make over from a local beauty/tanning salon "The Tannery". I am so thankful for this trip - I am hoping it will rejuvenate our lives. The radio station will be contacting me soon - to tell me more about the winning package.

I had bumped into a wonderful gal the other day who mentioned that her special daughter sees a pediatric epileptic doctor at a children's hospital in MN (the doctor actually specializes in nothing but pediatric epilepsy) - and she very HIGHLY recommended a particular doctor - so I called today - to see if we could get an appointment for Brextin - and luckily we did (plus our insurance will cover the appointment and hopefully the procedures) - however I will need to miss another 2 days of work while he gets another EEG done. As I talked to them - they had indicated they usually keep the kids at least 2 - 5 days to get an accurate EEG reading - we have never had a EEG lasting longer than 48 hours.

I am hoping they suggest he receives a PET scan - which would allow us to locate his “seizure focus” to help conquer his epileptic seizures?

I emailed our Neuro doctor that we currently see - to see if he thought he would be a surgical candidate - however he responded with this . . . I do not think that Brextin is a surgical candidate because of his multifocal epileptiform discharges, but I will ask our senior pediatric epilepsy specialist.

We love our neurologist that we currently see at Rochester Mayo - but we have never had a second opinion - so we are now exploring that option.

He has been having about 2 to 3 seizures a day lately.

Sunday, March 28, 2010

Back to seizures and throwing up :-(

Once we increased his seizure meds - last week I thought we had conquered them - however - our wonderful daycare provider thought he had a seizure on Thursday - and threw up as a result of the seizure - and then today while at church - the same thing occurred.

While we were at church he was beginning to take a nap - and the pastor called up anybody who needed to be healed to come forward and so of course I took him up to the alter and once everyone clapped for praise - his eyes went right open, but nothing else happened - yet I was pretty sure something was going to occur - because he was in a deep sleep and now his eyes were wide open and sure enough - his face began to get red blotches all over it - and I saw the signs of a seizure coming on - so I rushed him to the back of the church to lay him on the floor and then he began to have a seizure - and luckily our friend Sam followed me to make sure everything was ok - because he ended up throwing up his breakfast all over himself and the floor - and luckily Sam found a towel near by that allowed us to catch some of it.

Praise be the Lord- please heal our son and allow a miracle to occur!! He just doesn't deserve to be put through this - he is such an adorable boy who deserves to be able to enjoy life just like you and me!

Thursday, March 25, 2010

Therapy and so many different philosophies

My birth to three coordinator - asked me to check with another therapy center for additional PT - therapy over the summer - since he will only receive services about one to two times a month through the school district (I will pay out of pocket) - and so I did and I could not believe this is what the employee told me through an email - when I asked if they offered PT to help further my son's development . . .

If he does not have any means of moving by himself despite having had therapy for 2-3 years through B-3, this indicates that therapy is not necessarily helping him. This also indicates low therapy potential for significant change during a 8-12 week period (our summer program).

I responded to our birth to three coordinator - with thank you for passing me onto this other therapy center - however - I would rather work with individuals who see hope in our son's life - he has come a long way from where we began - and I believe there is potential - but I don't think therapy one time a week is enough - professional athletes do not become pros at their sport by practicing one hour a day once a week - it takes time and dedication - just like my son's life!

Would you not agree???

Epilepsy Awareness day this Friday!!


Please support our son and the many others who are struggling with this disorder - wear purple to show awareness!!

Sunday, March 21, 2010

We had an awesome day - not ONE seizure today!!

What a difference an increase of meds can do - Brextin only had two seizures yesterday and NONE today - hallelujah!!!! He was all smiles and full of life today. I pray for more awesome days and never to return to our horrible day that he had on Friday.

Saturday, March 20, 2010

Ball pit!!!

Grandma was going to take big brother to Hardee's to play in their ball pit - so I created one for little Brextin - he enjoyed watching basketball with daddy.




video

Recent photos!

Hopefully this won't happen on a real horse :-)!
Grandpa and Brextin - ahh texture!!

Moments with daddy!

One, three, six, nine, thirteen seizures in one day - Lord help!

He had one seizure for daddy yesterday morning, four for our daycare provider, four for me after I picked him up from daycare and then four more while he slept (that we woke up to - who knows how many we missed). We have no idea why we are seeing an increase. We had been seizure free for one week on 3.8 of generic Keppra and as of this morning we increased his amount to 4.5 in hopes it will help. It usually takes about two days before the increased amount actually takes into effect.

Luckily he hasn't been tired after any of the seizures that I have seen. They usually last around 30 seconds and then he continues doing what he was doing - whether it is eating, or playing with his chew toy - these past seizures haven't been making him tired at all.

I bumped into two wonderful gals yesterday in the waiting room while Brextin was getting his weekly massage - they were parents of children who are older who also have disabilities and they even passed along their contact information so we can continue to talk. They told me that even though the future might seem iffy - things will be ok - by taking each day by day. It is just amazing how therapeutic their talk was to me - it was priceless!

Thursday, March 18, 2010

Seizures still not controled . . . & horse therapy

We have now increased his generic Keppra to 4.0 ml two times a day. He had three seizures yesterday - one with convulsions.

While a ton of families are planning a family vacation for the summer months - I am planning to spend our family vacation money on therapy needed for my son since we only get 40 sessions combined for OT, ST, and PT. I have been seeking horse therapy for him. Once he turns three all horse therapy centers will take him. (most will begin him on a probation period - since he is so tiny they are unsure if they have a helmet to fit him) The prices that I have found have been around $300 to $400 for either 6 to 10 sessions. Plus since he will lose birth to three services over the summer we will need to pay for each therapy session out of pocket - (each therapy center at the Special Children Center usually costs a little over $100 per session)

http://www.trinity-ec.com/trinity_services/healing_with_horses.phtml , http://www.naturesedgetherapycenter.org/ , http://walkontherapeuticriding.org/

I certainly HOPE things will improve over the years so our oldest son is able to enjoy some vacations - it is unbelievable how much therapy cost and isn't covered under any type of insurance. The sad part is that there is no guarantee that the therapy will even advance my son's progress - we can only pray!~

Tuesday, March 16, 2010

Another step backwards

I had a late day at work - for a late in-service and so I called our daycare provider on my way home to see how things went today - and she said - I wish I could tell you good news - however - he had a seizure today that lasted about 2 minutes but this one was different - it appeared as if he was having convulsions while the seizure was occurring. His hands and feet were moving.

This is a first for him - I sure hope they won't continue (usually his body just freezes until the seizure stops) - then as soon as I walked into the house my husband told me he had another one during his bath - but he didn't see convulsions - urgh!! I hate this!!! He has been seizure free for one week and now we are back to the unknown!!! I have notified our neuro to see if another EEG will be needed if he continues to have convulsions - hopefully I will hear back soon.

Wednesday, March 10, 2010

Poof chair


This is a picture of a chair we have - that will be wonderful for Brextin when he gets bigger - it is called a "poof chair" it is like a bean bag chair but is filled with recycle sofa foam - and if it loses its shape all you do is "poof" it up - I plan on placing a picture of my oldest son sitting in it soon - so other parents will be able to see how big it actually is - I think ours is a 3 foot chair. The chair can be shaped to fit around the child.

Updated videos

Here are some videos (even though they show up black - they will play if you press the arrow) - one will be a current video showing him having one of his recent seizures, one is of him sorta giggling, one is of him babbling with his hands, and one is of him bouncing on his knees. Currently we have his seizures under control with generic Keppra (3.8 ml twice a day)

video video video video

Sunday, March 7, 2010

More and more seizures!!

I had a terrible night last night - Andy has been away for the weekend for a racquetball tournament - so I have had the boys to myself - and I was blessed to have our daycare provider take them Friday night because last night was horrible. Here is how it went:
11:00 Brextin had a seizure (he did throw up this time)
11:30 - my oldest son - yells "I'm hot"
12:00 Brextin has another seizure
1:00 Our dog had to go outside
1:30 Brextin had another seizure (never threw up) plus our oldest son had to go to the bathroom
2:00 Brayden wanted colder water to drink
2:30 Brextin had another seizure (never threw up)
4:00 Our oldest son asked to climb into my bed
5:00 Brextin had another seizure (never threw up)
8:00 Brextin had another seizure - (never threw up) decided it was time to get up and get our lovely day started :-)
8:30 My oldest son is still sleeping in our bed - and I am jealous - :-)
8:40 Brextin had another seizure while being fed

I do hope that our oldest son is feeling better today - it didn't appear as if he had a fever this morning which is a good thing - I have decided to increase Brextin's seizure meds to 3.6 of the generic Keppra.

Saturday, March 6, 2010

Check out these great books for vision!

Brextin has been labeled legally blind - and I ran across these books from another one of the blogs that I follow - maybe he would be able to see them since they show movement and are in black and white - one I think is in color (I bought mine used - saved a ton) . . . hmmm -
http://www.amazon.com/Waddle-Scanimation-Picture-Book-Books/dp/0761151125/ref=pd_rhf_p_t_2 and http://www.amazon.com/Gallop-Scanimation-Picture-Book-Books/dp/0761147632/ref=pd_sim_b_2

Watch the video on Amazon.

Product Description
There's never before been a book like Gallop! Employing a patented new technology called Scanimation, each page is a marvel that brings animals, along with one shining star, to life with art that literally moves. It's impossible not to flip the page, and flip it again, and again, and again.

A first book of motion for kids, it shows a horse in full gallop and a turtle swimming up the page. A dog runs, a cat springs, an eagle soars, and a butterfly flutters. Created by Rufus Butler Seder, an inventor, artist, and filmmaker fascinated by antique optical toys, Scanimation is a state-of-the-art six-phase animation process that combines the "persistence of vision" principle with a striped acetate overlay to give the illusion of movement. It harkens back to the old magical days of the kinetoscope, and the effect is astonishing, like a Muybridge photo series springing into action—or, in terms kids can relate to, like a video without a screen. Complementing the art is a delightful rhyming text full of simple questions and fun, nonsense replies: Can you gallop like a horse? giddyup-a-loo! Can you strut like a rooster? cock-a-doodle-doo!

I am now on facebook

I had some time to explore facebook today - so I just set up an account - I still have no idea what I am doing - but I am exploring and downloading a couple of photos.

I got out again!

I have been up and down with emotions - at certain times I am fine raising a child with extreme needs and then other days - I just break down and wonder if I can handle it and why why why us - and just break down in a good cry.

I won tickets the other day to a play, Guys and Dolls and offered them to our WONDERFUL daycare provider and she said that I should go - and so I took her up on the offer - she watched both of my children over night while a co-worker and myself went to dinner and the show - we even went for a drink afterwards- boy did I need this - I just felt totally rejuvenated -

The down side is that I have troubles finding people to do things with - most people get to do things with their co-workers (as friends) and well since I teach in a village - our staff members live all over and so it is tough to connect with anyone. I still chum around with my best friend since 8th grade- however she too - has a busy life- 3 kids, works full-time, plus goes to nursing school. My mom is wonderful also to do things with - but this week my dad is on vacation so they left for the week -plus she is still recovering from knee surgery that occurred back in October and now she will be having the second knee done this month. We use to have a ladies night out in our neighborhood - but that fizzled - I only have one sister and she lives 30 miles away.

At times I wish there was a friend finding service - instead of just dating services - I don't need a dating service since I am married - but would like to know how does one meet new friends - when you are in the upper 30's - I can't get to the gym to meet anyone there- I am not a bar person - I just know that I need to get out more to rejuvenate my soul without kids - and I am thinking that will be a goal this year- to get out at least once per month and totally enjoy myself - I think it was easier to type than to full-fill. Wish me luck!

A quick update on seizures - we have now upped his generic Keppra to 3.2 twice a day - he has been having about 3 seizures a day since weaning him off of Vigabitran - the bad thing about this is that he has begun to throw up after each seizures - which typically wears the little guy out - on a good note - he has been full of energy and I even heard him laugh twice - which is a heartwarming - I am going to try to film it and place it on this blog -

Tuesday, March 2, 2010

So far so good - with the wean of Vigabitran!!

We ended Vigabitran 100% as of Saturday and currently no Seizures - we continue to pray for further success. (I sure hope I don't jinx him) He does however have a terrible terrible cold - every time he coughs - it sounds as if he is going to throw up - so sleep has been limited for all of us - we finally took him to the doctor in hopes something could be done - and it appears as if he has an ear infection - even with tubes in his ears - so we will now add ear drops to our daily routine.