Friday, July 26, 2013
Wednesday, July 24, 2013
Social Media can be AMAZING at times.....
Most of the time I find social media to be a drama filled nuisance, but occasionally you luck into a good story or link that changes your perspective. I'm not sure if any of you are familiar with The Adventures of Super Jax on Facebook or his mother's blog at http://theadventuresofsuperjax.wordpress.com/, but I've been following his story for a couple of months now. Sweet Jax was born with a rare birth defect called OEIS Complex. His entire (almost) 6 months of life has been spent inside the walls of a hospital. His mother's words are beautiful and raw; uplifting and inspiring. And the amazing smile that Jax sport's most of the time doesn't hurt either.
Tuesday I log on to Facebook to do a little scrolling on my page to see if anything catches my eye. I found a new post by Jax's mom, Tierney, that just broke my heart as a mom. Jax's dad has taken a new job in Pennsylvania (Jax is in a Children's hospital in NY) and the family really wanted to stay together. Combine that with the fact that one of the procedures that Jax needs is done at UPMC in Pittsburgh, and the want becomes a need. Tierney poured out her heart on how they were looking to find a way to do a hospital transfer for Jax, and were being turned away at every door, or expected to pay a fee they can't possibly afford. Her wall was flooded with responses. It only took me a moment to realize that I have a friend who is the Chief at an EMS station outside of Pittsburgh. On a whim, I copied the link to her post and sent it to him in a text, asking if he knew of anyone that could help. In a matter of moments, Paul Falavolito, Chief at White Oak EMS, responded with a resounding, "Yes, I can do it." I quickly emailed Jax's mother with Paul's contact info and requested hers to relay to him. And that is where the magic started.....
By Wednesday morning, I receive a text from Paul saying the trip is a go and they even snagged a corporate sponsor through Cornerstone Adminisystems (THANK YOU!!!) They've even been able to get some publicity for Super Jax, that will help the family in the long run. It is with great JOY that I am able say Jax will be in Pennsylvania at UPMC sometime Thursday, July 25th (just in time for his 1/2 birthday on the 28th).
So, you see sometimes, just sometimes, there are great things on social media. I sit amazed at the response and quick turn around of a not so simple request. My heart is smiling and jumping for joy at the opportunities that await this young man and his sweet family. May God bless you all!! HUGE THANKS TO: Paul Falavolito, White Oak EMS, Cornerstone Adminisystems, and UPMC.
(All my prayer warriors be praying for safe travels tonight and tomorrow morning as the transport of Jax takes place.)
Tuesday I log on to Facebook to do a little scrolling on my page to see if anything catches my eye. I found a new post by Jax's mom, Tierney, that just broke my heart as a mom. Jax's dad has taken a new job in Pennsylvania (Jax is in a Children's hospital in NY) and the family really wanted to stay together. Combine that with the fact that one of the procedures that Jax needs is done at UPMC in Pittsburgh, and the want becomes a need. Tierney poured out her heart on how they were looking to find a way to do a hospital transfer for Jax, and were being turned away at every door, or expected to pay a fee they can't possibly afford. Her wall was flooded with responses. It only took me a moment to realize that I have a friend who is the Chief at an EMS station outside of Pittsburgh. On a whim, I copied the link to her post and sent it to him in a text, asking if he knew of anyone that could help. In a matter of moments, Paul Falavolito, Chief at White Oak EMS, responded with a resounding, "Yes, I can do it." I quickly emailed Jax's mother with Paul's contact info and requested hers to relay to him. And that is where the magic started.....
By Wednesday morning, I receive a text from Paul saying the trip is a go and they even snagged a corporate sponsor through Cornerstone Adminisystems (THANK YOU!!!) They've even been able to get some publicity for Super Jax, that will help the family in the long run. It is with great JOY that I am able say Jax will be in Pennsylvania at UPMC sometime Thursday, July 25th (just in time for his 1/2 birthday on the 28th).
So, you see sometimes, just sometimes, there are great things on social media. I sit amazed at the response and quick turn around of a not so simple request. My heart is smiling and jumping for joy at the opportunities that await this young man and his sweet family. May God bless you all!! HUGE THANKS TO: Paul Falavolito, White Oak EMS, Cornerstone Adminisystems, and UPMC.
(All my prayer warriors be praying for safe travels tonight and tomorrow morning as the transport of Jax takes place.)
Monday, July 8, 2013
2013 has been a confusing year....
In so many ways Sean is your typical 7 year old All-American boy. He's rough and tumble; a magnet for dirt; creative, imaginative; loves science, BUGS, and Legos. Yet, there is always something--some little thing that sets him apart, makes life a little bit tougher for him. He wants so desperately to have playmates and to be liked by other kids, yet he cannot seem to make those connections. My heart breaks at the loneliness he feels; the way he goes overboard trying to impress ANY kid that gives him an iota of attention. How I wish the other kids could "get" Sean; his love for nature; his generous spirit and loving heart; his insight into the world.
From infancy Sean was always a much more difficult child than his laid back brother. He threw his first full tantrum at 5 months of age--and I knew I was in trouble (haha). His medical history is complex and atypical (long history of excessive immunological responses); behavioral issues; sensory issues; developmental delays,etc. There is a long running issue between the psychiatrist that treats him and the school as to whether hes is Autistic or not (school has issues with diagnosis because his verbal ability is quite strong.)
However, it is academically that worries me the most. Despite 3 years of preschool (with wonderfully attentive, patient staff) and 2 years of Kindergarten, Sean is still struggling to recognize the letters of the alphabet--in fact it took until March of his first year of kindergarten to even be able to sing the alphabet song. His lack of ability to keep up with his peers has dramatically affected his self-esteem and already tough behaviors to the point that he was tested to rule out psychosis. The problem is he IS very smart; extremely strong visual skills; very multisensory learner--but it isn't showing up on assessments and work. Starting in February of this year, his behavior took a major nosedive---he started eloping again; being physically aggressive; major meltdowns over anything related to reading; etc. Normally when its so sudden there is an underlying medical issue and since he has a high pain tolerance; lack of fever and typical symptoms; it is often a guessing game as to what is wrong. His only steady complaint is a stomach pain that feels like "boiling lava." Blood tests revealed nothing so the psychiatrist decided to up his dosages. That didn't make any changes either.
Fast forward to June: his behaviors became more defiant/oppositional; he was lethargic all the time; lack of appetite; and then his kidney's started acting up. Took him to the pediatrician to discover not only are the kidneys out of whack, but his blood pressure is very high. Turns out that seemed to be another excessive response to some unknown virus and his body attacked the kidneys in response. Now his kidneys are back to normal but he is complaining of "heart pain," pain in his stomach (STILL); and pain that radiates down his right arm. His energy levels are down; his joints ache all the time; he sweats profusely; and he's just not my Sean.
So I sit back and think: this year is so confusing---so many unanswered questions; normal tests; atypical behaviors; and a little boy that just wants to be normal. If anyone has a suggestion, I'd love to hear it. Anything at all.....
From infancy Sean was always a much more difficult child than his laid back brother. He threw his first full tantrum at 5 months of age--and I knew I was in trouble (haha). His medical history is complex and atypical (long history of excessive immunological responses); behavioral issues; sensory issues; developmental delays,etc. There is a long running issue between the psychiatrist that treats him and the school as to whether hes is Autistic or not (school has issues with diagnosis because his verbal ability is quite strong.)
However, it is academically that worries me the most. Despite 3 years of preschool (with wonderfully attentive, patient staff) and 2 years of Kindergarten, Sean is still struggling to recognize the letters of the alphabet--in fact it took until March of his first year of kindergarten to even be able to sing the alphabet song. His lack of ability to keep up with his peers has dramatically affected his self-esteem and already tough behaviors to the point that he was tested to rule out psychosis. The problem is he IS very smart; extremely strong visual skills; very multisensory learner--but it isn't showing up on assessments and work. Starting in February of this year, his behavior took a major nosedive---he started eloping again; being physically aggressive; major meltdowns over anything related to reading; etc. Normally when its so sudden there is an underlying medical issue and since he has a high pain tolerance; lack of fever and typical symptoms; it is often a guessing game as to what is wrong. His only steady complaint is a stomach pain that feels like "boiling lava." Blood tests revealed nothing so the psychiatrist decided to up his dosages. That didn't make any changes either.
Fast forward to June: his behaviors became more defiant/oppositional; he was lethargic all the time; lack of appetite; and then his kidney's started acting up. Took him to the pediatrician to discover not only are the kidneys out of whack, but his blood pressure is very high. Turns out that seemed to be another excessive response to some unknown virus and his body attacked the kidneys in response. Now his kidneys are back to normal but he is complaining of "heart pain," pain in his stomach (STILL); and pain that radiates down his right arm. His energy levels are down; his joints ache all the time; he sweats profusely; and he's just not my Sean.
So I sit back and think: this year is so confusing---so many unanswered questions; normal tests; atypical behaviors; and a little boy that just wants to be normal. If anyone has a suggestion, I'd love to hear it. Anything at all.....
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