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Friday, April 30, 2010

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.

Friday, April 23, 2010

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!

Wednesday, April 21, 2010

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!!

Sunday, April 18, 2010

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!

Tuesday, April 13, 2010

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.
video

Sunday, April 11, 2010

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.

Saturday, April 10, 2010

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 -

Tuesday, April 6, 2010

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!

Friday, April 2, 2010

New type of seizures??

videoWe 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!!