He failed his hearing test - an ABR has been scheduled

Brextin seems to like real high frequencies so I am a little concerned that his hearing might not be the greatest - so we went to the hospital yesterday for a hearing test- we sat in a booth and the doctor did a variety of tests to see if he would respond as he heard different sounds at a variety of locations in a small sound proof room - he scored around a 40-50% on his responses. So we are now going to be scheduled for a stacked ABR test that will test his hearing capabilities as he is asleep or is sedated by attaching electrodes to certain areas on his head. We have tried to do something similar at Mayo but they keep putting us off so we will be doing the test locally at a hospital in Chippewa Falls.

He is also having a second opinion EEG done at a children's hospital in MN next week - our last second opinion was when he was 2 months old and that hospital totally missed any of his seizures - that was when we sought out Rochester Mayo.

My husband is against this second opinion (his opinion is - it is what it is) - I myself have an open opinion and I am gladly interested in what this new doctor has to say about his development and EEG results.

So far the name brand Keppra has been working - knock on wood - but we have not seen any seizure activity since Sunday. Again knock on wood! He might be having a honeymoon period. This is when a new drug works for about 2 weeks and then stops.

Thrift sale was a huge success!

We had a wonderful turn out for our thrift sale and have raised a nice amount to help pay for some therapy. There was even a nice lady that stopped by and only talked with my husband - she offered to work with Brextin free of charge for therapy - and can you believe it my loving husband said no thanks - apparently she has three special needs children of her own - god bless her sole that she would be willing to open her heart to one more child.

I asked my husband - do you even know what your son's therapy schedule is? I don't think he even knows that we take our son to three different therapists to try to improve his development - he is totally clueless - I would be honored to have someone in the community help with his well needed therapy if they offered and they knew what they were doing - yet he turned her down -

Even though he turned her down for the therapy it still would have been nice to have met her to discuss what she has tried with her own children for therapy. I love connecting with other parents who can relate to us - however the lovely Hippo law doesn't allow us to find anyone - and support is really needed in order to stay strong.

Locally we have a group called the "gene pool" and it has been dying over the years since most of the children are entering adulthood -however, luckily this Sunday they will be meeting in hopes of rejuvenating the group. I am looking forward to meeting other parents in our community that can relate. So I am really looking forward to attending.

However since I will never meet up with the parent from the thrift sale again (unless she attends the gene pool meeting on Sunday) - I will have to continue to spread myself thin as I try to transport him to all of his therapy centers in two different areas in hopes he will continue to move forward with his development.

We have sadly had a set back for his seizures - today alone he has had over 5 seizures - so he will be having a 24 EEG in May to monitor any changes in his brain pattern.

I again simply say - Lord please allow our son the capabilities of living a life without these terrible seizures and allow him a miracle in living an independent life - allow him the right to learn how to communicate with others and remain strong as each day can be a struggle. Oh Lord please hear our prayers!

I am concerned that the spasms have returned!

I am concerned that the spasms have returned - we have never seen spasms with our son - the brain pattern just has been observed while on a EEG - however this time I believe we are physically seeing the spasms. I can be holding him and he will be grabbing at my hair and all of a sudden he will let go and both arms will go straight up in the air and then come back down - it is bizarre behavior. Our daycare provide has said she has seen many of these - and I experienced my first one the other day. I have a call into our neuro at Mayo - and so I am now waiting to hear a response back. (waiting for a returned phone call can be the hardest thing!)

I am fearing he is loosing some skills - he has always bear weight and actually lifted his foot to walk while holding onto our fingers but lately he has been a little stinker and not wanting to bear weight or lift his feet - I just thought he was being defiant - I sure hope he isn't beginning to lose the skill due to the spams! Please pray!!

We did finally get the name brand Keppra as well - it wasn't the doctor that was slowing the process down it was the pharmacy - they never called to tell us it was ready to be picked up TWO days ago!

School - IEP - and diapers

We had his transition meeting yesterday and I think it went pretty well - nothing is finalized yet - but I think we will try to send him 3 days a week for about 2 hours a day. He will also receive OT, ST, and PT while at school. We plan on also getting therapy at Nature's Edge as well if we get approved with medical assistance.

I thought every state paid for diapers once their special child turned 3 - but I have been told WI is different and doesn't pay for them until the child turns 4. So I guess we will have another year of buying diapers and depends!! Yippee for us!!

Why does it take so LONG for doctors to reply!

It would be two weeks this Saturday that Brextin has had a seizure - however today he has had many - I have asked our neuro at Rochester Mayo to put him on the name brand drug instead of the generic brand of Keppra - but it is taking him forever to get it prescribed (first it was our insurance that was slowing the process down and now we are just waiting for our doctor to write a letter in support of trying the name brand drug) - it will be two weeks very soon - he is a well known doctor so he is out of the state or even country quite often - so I usually have to wait and wait until I hear back from him - I hate the waiting - my son is hurting because of the wait!!

Getting ready for a block thrift sale - a sad moment for me

As I am beginning to mark items for the sale - I can not help but hold back the tears as I am marking toys that his once older brother use to play with - in hopes that our youngest son would be able to play with - yet that will not be the case. It will be very sad to see these once playful toys go out of my house knowing my son who will be 3 next month will never be able to play with them. The only thing that will be positive out of this sale is that the money raised will be able to be used for well needed therapy or equipment for our son!

Purple toes

We have always questioned Brextin's circulation - and our local doctor claims that it is normal among children who are non-mobile - I just can't believe that - yet I have no idea what type of doctor would work in this department - here are some photos of his feet -

We are going to try name brand Keppra instead of the generic

We are going to try the name brand version of Keppra to see if it will make a difference other than the generic version - since he still continues to have two to three seizures a day - Hopefully the prescription will be called in today.

I plan on attending a social gathering tonight to meet with other parents in our area that can relate to raising a child with extreme needs. The last time I planned on attending it was canceled.

Tomorrow will be his first official visit to Nature's Edge therapy center.

I am currently checking on another center about 45 miles away that will hopefully be able to help us teach him to better suck. Here is a video of him actually sucking on his fingers.

They're back!!! Ugly Seizures!

Brextin has been having about two to three seizures a day (plus throwing up after some of them) - we have increased his generic Keppra to 5ml twice a day. I have an email into his neuro at Rochester Mayo to see what the next step will be. Some parents have said that once the child received name brand Keppra and not the generic it made a huge difference. Who knows - just waiting to hear back from his doctor.

Spread the word - end the Word!! www.r-word.org

One of my high school students came to school with a shirt that read . . . stop the r-word and I loved it and commended her for wearing it in support of all children who have challenges. (she had gotten it through her girl scout troop) The slogan is a campaign through the Special Olympics and the Best Buddies organization.

http://www.r-word.org/ (here is a link to their home page) - I truly loved shirt so well that I bought one for myself at . . . http://bestbuddies.org/shop/storefront/ scroll down until you see other words - then click on Woman's and scroll down till you see the shirt (it was only $8.00 with about $5.00 for shipping and handling) On the back - it reads . . . Acceptance, Passion, Humanity, Unity, Be a fan of RESPECT - http://www.r-word.org/ The shirt is made of a very thin material - however I love the saying and the meaning behind the shirt and their slogan -

You can purchase different shirts at their main webpage as well but they were more expensive than going through the best buddies website.

Help spread the word - end the word!!

Help eliminate the use of the R word in everyday speech!

Alternative therapies??

A topic that has been discussed on one of the groups that I belong to via Yahoo - has been on alternative therapies. I still strive each and every day in hopes of finding the miracle therapy that will help advance our son's development - however I am beginning to think - maybe time is the only cure - but how much time - time to me is standing still - to know that my son will be turning 3 next month and still can not crawl, communicate, drink liquids via mouth, stand, or even reach for me is breaking my hopes down.

Some therapies that were mentioned was:
Working with a naturopath
Neurofeedback - it is a way to help your own body regulate the brain's electrical activity
ABR - advanced bio-mechanical rehabilitation
Neurological Reorganization - "Masking" or "Rebreathing" It allows more oxygen into the brain without directly supplying it like with HBOT.
Tomatis - It is listening therapy
Feldenkrais - engaging the child in a process that provides the brain with the conditions and information it needs in order to begin learning
VitalStim - is a new medical break through used in the treatment of swallowing disorders

Has anyone else used these types of therapies?

I just found a center near us that offers VitalStim and Feldenkrais - It would be awesome if Brextin would learn how to suck and swallow. Then we could possibly get rid of his g-tube.

We have talked about getting him tested to see if his body is short on certain supplements - but when I mentioned this to his doctor at Rochester he just told me - often the test is given so the companies can sell their supplements and they are not really looking out for what is best for the child. We do give him fish oils and MB12 shots.

Any ideas or suggestions -

We have had over 10,000 hits yahoo!!

I can not believe our son's blog has had over 10,000 hits - I love it!!!

I sure hope people are able to learn about our son's condition and visually see all of his accomplishments over the past years.

We have tried a ton of different therapies over three years -
occupational therapy, speech therapy, physical therapy, medek therapy, hyperbaric oxygen therapy, water therapy, music therapy, massage therapy, CranioSacral, and will soon be trying AIT therapy, and hippo therapy.

It is hard to believe that our little guy will be turning three next month. We will be having his transition meeting in a couple of weeks and I have called an advocacy agency in hopes of their support in helping me to fight for Brextin's needs as he heads to school in the Fall.

Thank you to all of those who read and follow our blog - we sure do appreciate it!

New type of seizures??

We have been noticing a different type of seizure lately - his face begins to get red botches (warning sign to us) then his body begins to twitch (watch his arms and legs) and often he throws up afterwards -

I changed our date for the new EEG - since they are interested in having us for about 3 to 5 days I decided to wait until school was out - so his EEG at the Children's Hospital in MN will be in June. His AIT therapy will be pushed forward another week - so he will receive that training the third and forth week in June.

Plus we were just notified of a center near us that will allow our son to ride a horse for FREE - amazing - unfortunately the owner is out of town this week so we will have to wait another week - but we checked out two other centers near us - one wanted $140 for 6 sessions (I signed up for this - which was before we were told about the free lessons) but I haven't heard if they accepted our registration (I am hoping we can cancel) and the other center near us asked for $300 for 10 sessions. I am so excited to try horse back riding for Brextin and the best thing is that the riding center is about 10 minutes away from our house and not 45 miles away!!

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.

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!

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!!

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.

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.

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!

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!~

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.

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)

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.

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 -

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.

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!!