As I've said before our 2 1/2 year old daughter was diagnosed with 15q24 syndrome (a micro-deletion on the 15 chromosome) when she was around 16 months old. As a parent my first questions were: A) What does that mean? B) How will this affect her mentally and physically? C) What will she be like as a teenager? D) What will she be like as an adult? And we of course received the answer we didn't really want, "It depends" and "We're not really sure". Luckily I'm the cool headed one of the parenting team in our house and I was able to circumvent this questioning with the phrase "In your best estimate what will she....A, B, C, D. That's one thing I've learned from dealing with doctors, very few of them want to give you and absolute- for obvious reasons. My mother suffers from MS (Multiple Schlerosis), she has declined rapidly over the last 10 years and is now confined to either her bed, wheelchair, or her recliner. She depends on help for everything from getting in and out of bed to getting dressed to going to the bathroom to eating. It's not a disease I would recommend. But through her illness it has been very hard to get a doctor to give an absolute answer. Which in the doctor's defense, MS, just like 15q24, isn't very well understood.
Is that what our little Bella has to look forward to, we wondered when she was 24 months and still not walking? Thankfully at about 25 months she took off, I mean she wasn't running but the girl was walking! Then after walking the speech took off as well! From the time Bella was diagnosed she has received "intervention" through ECI (Early Childhood Intervention), it has been a Godsend. Therapy 2-3 times per week was very trying but definetly worth it. Now her case worker comes twice a month and checks on her progression, which he is very amazed at.
Of all the therapies Bella has done the most significant one has been Equine Therapy. Once again, thankfully a good friend of ours is the director of "Hanna's Horseshoes of Hope" a local non-profit that provides Equine Therapy. Bella responded more to this therapy than any of the others I believe. Don't get me wrong they've all been beneficial but Equine Therapy builds a different kind of connection or bond. We take Bella to "HHH" pretty much every Saturday to ride. She loves Geronimo, the broke down old Shetland Pony that she rides, and affectionately calls "Mo".
We still don't know what the future holds for Bella but I don't worry about it like I use to. We are providing her with all the resources at our disposal to ensure that we are doing all we can do. And I think at the end of the day that's all a parent really wants to know,...."Did I do all I could do?"
http://www.hannahshorseshoesofhope.org/
Is that what our little Bella has to look forward to, we wondered when she was 24 months and still not walking? Thankfully at about 25 months she took off, I mean she wasn't running but the girl was walking! Then after walking the speech took off as well! From the time Bella was diagnosed she has received "intervention" through ECI (Early Childhood Intervention), it has been a Godsend. Therapy 2-3 times per week was very trying but definetly worth it. Now her case worker comes twice a month and checks on her progression, which he is very amazed at.
Of all the therapies Bella has done the most significant one has been Equine Therapy. Once again, thankfully a good friend of ours is the director of "Hanna's Horseshoes of Hope" a local non-profit that provides Equine Therapy. Bella responded more to this therapy than any of the others I believe. Don't get me wrong they've all been beneficial but Equine Therapy builds a different kind of connection or bond. We take Bella to "HHH" pretty much every Saturday to ride. She loves Geronimo, the broke down old Shetland Pony that she rides, and affectionately calls "Mo".
We still don't know what the future holds for Bella but I don't worry about it like I use to. We are providing her with all the resources at our disposal to ensure that we are doing all we can do. And I think at the end of the day that's all a parent really wants to know,...."Did I do all I could do?"
http://www.hannahshorseshoesofhope.org/
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