A FRIEND LIKE ME
Please don't be afraid of me
I want to be your friend.
And if you get to know me
Your rigid thoughts might bend
Thoughts that I am different
From others that you know,
I really am no different
And this I'd like to show
I live and breathe and laugh and cry
I love to play and learn,
I sometimes do things differently
Which can cause some concern
You see, some say I'm special
I guess this much is true,
But if you were to ask me
I'd say you're special too
We're all a little different
No two are just the same,
It's really something wonderful
that way there is no blame
When things don't go just perfectly
And others get confused,
And say things like "poor child"
and other terms they use
It's okay if you look at me
And might not understand,
It's okay if you touch me
And even hold my hand
My life has many obstacles
Much more than you could know,
But that's not what I dwell on
I'm me, that's all, and so...
Please don't be afraid of me
I want you just to see,
How truly great and wonderful
A friend like me can be
Reilly is from Rutland VT and he is the son of Chris and Irene Jakubiak.
Reilly was born June 9, 2006 and appeared to be a normal little boy until he was 18 months old or so. Reilly was not talking and he had hand tremors and was unable to feed himself. At his 2 year well child visit we decided to start Speech, Physical Therapy, Occupational therapy and to see a neurologist at DHMC. July of 2008 we saw Neuro about the tremors and he was scheduled for a MRI in a couple of months. On August 1, 2008 Reilly started stumbling and being clumsy and next think we knew he was seizing. We took him to RRMC and they did a CAT scan and it appeared to be normal he was admitted over night and released the next day, On Monday he went to see his primary doctor and seemed okay then later in the day he could not walk and I knew something was wrong. I called his Neurologist at DHMC and told him something had to be done. Reilly was admitted into DHMC and with in a short period of time we knew Reilly had seizures. He was diagnosed with Myoclonic Epilepsy. He was started on meds and scheduled for an stat MRI. It showed some abnormalities but nothing that seemed to explain anything. Reilly was started on Keppra and the EEG looked better. The hand and upper body tremors did had very little improvement. We were released and our journey began.
Since August 2008 Reilly has started taking 3 more seizure meds and it has been determined that Reilly has multiple seizure types. We have seen regression in Speech (what little he has) his walking is now like a child who started walking a few months ago he stumbles and falls a lot. He is still unable to feed himself using a spoon or use a for without assistance.
We have had lots of testing at Dartmouth Hitchcock Medical Center and Boston Children’s Hospital. Today Reilly take 19 doses of meds a day. He goes to EEE three days a week and also goes to Speech twice a week, PT once a week, and OT once a week.
We would go anywhere we thought might be able to help our little monkey. Stay up to date with Reilly by joining his cause on facebook. http://apps.facebook.com/causes/370700/17703180?m=e56504ed
Meet the Fields Triplets!
In November 2007, Anna, Ayva and Justin, were born 11 weeks early. Anna and Ayva suffered a lack of oxygen during delivery. When the girls were 7 months old they were both diagnosed with Infantile Spasms. After a month and a half of treatment, Anna became seizure free. Ayva tried many medications and after 10 months of constant seizures, she became seizure free after a VERY difficult expierence on ACTH treatments. Now, 3 months later, she began having seizures again. You can learn more about this tough trio by watching their video: http://www.youtube.com/watch?v=SNKrQgSkry8 or visiting their blog: http://www.fieldstriplets.blogspot.com/
Who could forget Andrew???
Andrew just might be the toughest little guy that we know of. Many of you might remember him from a video I posted on facebook asking you to pray for Cole's friend the day before his big surgery. Andrew recently underwent a callosotomy. For those of you that do not know what that means here is the definition: The corpus callosum is a band of nerve fibers connecting the two halves (hemispheres) of the brain. A corpus callosotomy is an operation in which all or part of this structure is cut, disabling communication between the hemispheres and preventing the spread of seizures from one side of the brain to the other. This procedure, sometimes called split-brain surgery, is for patients with extreme forms of uncontrollable epilepsy who have intense seizures that can lead to violent falls and potentially serious injury. Andrews Mom Bec has been a wonderful source of support for us throughout our journey. Andrew also suffered from Infantile Spasms like Cole. I strongly recommend anyone trying to decide if a callostomy is the right choice for their child contact her. You can follow along with Andrew by going to their blog. http://www.carepages.com/carepages/AndrewNewborn
