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A LETTER OF APPRECIATION From A Patient's Mother (Click On Pause To Stop Music) |
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Lincoln was born exactly on his due date. His delivery was beautiful and uneventful. He was a good sleeper
and first social smile was right on target at 6 weeks. And that was the last milestone he hit "on target."
He always progressed, but each successive milestone was just a bit further and further from the target.
He didn't crawl until two weeks after his first birthday. By 18 months we tired of waiting for the much-promised and much-hyped "spurt." He was clearly too far behind physically to easily catch up on his own. We started on the journey with a call to 348-TOTS to get early intervention started through the Minneapolis school district. Our first-ever screening was with a public health nurse. She did the paperwork to get the school assessments started. And she gave us some ideas about possible "next steps," the most important of which seemed to be a complete neurological/neuro-muscular assessment. We have a high deductible health plan - and due to my own medical event at the end of the prior year, our Health Savings Account was essentially drained as we looked at a long list of uncovered medical assessments. While we both had "good jobs" I had also chosen to go part-time when we got pregnant. Things were looking very tight as we looked ahead to neurological, developmental audiology, continued ophthalmology, and endocrine testing ALL AT ONE TIME. While Lincoln's needs made me especially happy to be working part-time, it made finances much more stressful. After leaving our assessment, the nurse called me later in the day; she'd just received a flyer about the Shriner's Assessment process. She explained that, if we qualified, we could get some of the orthopedic and neurological care there, for free, NO questions asked. We were shocked and knew this meant we could put our dollars toward the other services he'd need (audiology, speech, etc). We had heard of Shriners but knew almost nothing about what your services, nor did we know how close the beautiful campus is to our home! So we went for an assessment. It was scheduled quickly, and unlike any other process we've met, it was painless fast and family-friendly. It wasn't long into our appointment before someone said, "well, clearly Lincoln can benefit from what we offer here, so I'm happy to say we'll accept him into our program." And with that, we were literally off to x-ray. That simple. We would have done whatever we needed to do, whatever the cost, to help Lincoln. But having access to all the medical and therapeutic assessments without having to worry about cost? We had enough worry about our son; it was an indescribable feeling to know we'd not have to worry about money too. I remember "googling" the neurologist and learning that Dr. Rothman is the head of pediatric neurology at the University of MN. I joked with my friends and family, "I guess that's good enough for Lincoln." Little did we know what experts we'd have access to, for no cost. Shriner's has provided us with expert neurological assessments, genetic and metabolic testing, MRI, x-rays, orthopedic care, Ankle-Foot-Orthotics that are adorable, and ongoing Physical Therapy with a great team of people. Plus, Care Coordination that has really helped us get organized to maintain our own records, something that seems small but helps to ensure continuity of care across all our providers. What we've appreciated the most is how family-friendly everyone has been. It hasn't always been an easy road for us as Mom and Dad, but to have the Shriner's staff as our partners has made it a lot easier! With the help of his AFOs and his weekly PT, Lincoln has gotten so much stronger. He started to walk a few weeks after his second birthday and he cruises very fast (and gets a lot of attention) with the walker we've been loaned. He's so proud of what he can do! And he keeps getting stronger and more confident with each week of therapy. We still don't have a diagnosis for Lincoln. That's the reality for a lot of families. There is "no reason" for the way things are, but there is support and therapy that can help him make the most of life. Ultimately, that's all any parent wants. What's telling, is that Lincoln loves to go to Shriners. We pull in the lot and he gets excited. You have all become very dear to our family. We really can't thank you enough! |