Friday, April 30, 2010
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
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 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
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!!
Sunday, April 18, 2010
Tuesday, April 13, 2010
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 -
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.
Sunday, April 11, 2010
Saturday, April 10, 2010
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
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
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!!