NOW FOR THE SURGERY ADVENTURE:
IF you have been following us on my FB page, or Emily's or our LGF page you may be a teeny bit familiar with the complexities of what it takes to get things that are even medically necessary to get approved, especially when it comes to the necessity of having it done out of state. Let's just say that we have been working on this since September of LAST year!!! Another reason I am in contacts with our Senators and "leaders" of the medical communities to make crucial changes needed in our system on behalf of children with life limiting diseases, like Emily. Anywho, Emily and I left on Monday, April 23 via donated miles on Southwest Airlines. Talked with a very nice, connected man who we will be staying in touch with and hoping for good things to come. We were taken to the Ronald Mc Donald House of Delaware and it was nice to be at a Home away from Home and familiar place we have stayed at at least 6 times over the past 4 years. Tuesday Emily had x-rays head to toe pre surgery- Dr. M is very thorough and such an expert in Skeletal Dysplasias, albeit not exactly SIOD, but in general. ( We had a slight hiccup with those xrays, which were pre approved back in NE with our services, but one phone call and it was resolved). Wednesday, April 25 was the big day. Dr. M was done extracting the hardware from both of Emily's hips just under 2 hours. He and Colleen ( nurse practitioner who is fantabulous) reported to me that the xrays from the day prior showed some calcification above her pituitary gland in her head that wasn't there prior. So they and the radiologist wanted an MRI of her brain to make sure it wasn't a tumor or something given Emily and her history and her disease of SIOD. Emily was very sleepy post op and we went to her room. The afternoon and evening overnight were a bit rough as one might imagine getting pain under control and figuring out how much to move. Everyone at AI duPont Children's Hospital/Nemours were as great as before to help us out. Emily's MRI was done Thursday morning. Initial reports show what they saw, but not anything more abnormal, so I am still not real clear on this and we will be following up at home with our docs. I will say this threw a huge lump in my throat as anything is possible with this kiddo and this disease and my mind went to places I had to work real hard on counteracting with my meditation strategies due to stress, lack of sleep, etc...PT got Emily up and moving very slowly after the MRI. Emily was not happy and started reciting old sayings of phrases and such that we have heard before and breaks your heart, but mama lion had to nip it in the bud and bring out the tough love with an edge of empathy to help motivate her and keep her mind right. This part of the "job" is never fun or easy, especially clear across the country on your own, but necessary and it seemed to have worked. We were discharged to the RMDH Thursday late afternoon ( grabbed the hardware as Emily and I really wanted it for a few reasons) and then left for home Fri afternoon. Thank goodness for nice people in the airport and that Emily is a super travel partner despite the pain. We sat next to another great guy on the way home- divine intervention- with some connections and we are looking forward to our future collaboration with him as well! ( he kind of reminded Em and I of Clark Kent and even had on RWB socks- just saying...)
Emily has made great strides even in the day or so we have been home! Literally. She is walking with better steps with her walker and us behind her as she has to heal- there are holes now where the hardware was that need to fill with bone over the next six weeks, so her bones are fragile and falling would not be good at all!!
Well, there ya have it- Three Jam packed months of crazy busy fun,and some not so fun and in between all of that was doctor appointments, IVIG treatments/labs, therapies, and school and life in general.
As always we appreciate our followers and try to keep up as it won't be slowing down any time soon! SO MUCH coming!
IF you have been following us on my FB page, or Emily's or our LGF page you may be a teeny bit familiar with the complexities of what it takes to get things that are even medically necessary to get approved, especially when it comes to the necessity of having it done out of state. Let's just say that we have been working on this since September of LAST year!!! Another reason I am in contacts with our Senators and "leaders" of the medical communities to make crucial changes needed in our system on behalf of children with life limiting diseases, like Emily. Anywho, Emily and I left on Monday, April 23 via donated miles on Southwest Airlines. Talked with a very nice, connected man who we will be staying in touch with and hoping for good things to come. We were taken to the Ronald Mc Donald House of Delaware and it was nice to be at a Home away from Home and familiar place we have stayed at at least 6 times over the past 4 years. Tuesday Emily had x-rays head to toe pre surgery- Dr. M is very thorough and such an expert in Skeletal Dysplasias, albeit not exactly SIOD, but in general. ( We had a slight hiccup with those xrays, which were pre approved back in NE with our services, but one phone call and it was resolved). Wednesday, April 25 was the big day. Dr. M was done extracting the hardware from both of Emily's hips just under 2 hours. He and Colleen ( nurse practitioner who is fantabulous) reported to me that the xrays from the day prior showed some calcification above her pituitary gland in her head that wasn't there prior. So they and the radiologist wanted an MRI of her brain to make sure it wasn't a tumor or something given Emily and her history and her disease of SIOD. Emily was very sleepy post op and we went to her room. The afternoon and evening overnight were a bit rough as one might imagine getting pain under control and figuring out how much to move. Everyone at AI duPont Children's Hospital/Nemours were as great as before to help us out. Emily's MRI was done Thursday morning. Initial reports show what they saw, but not anything more abnormal, so I am still not real clear on this and we will be following up at home with our docs. I will say this threw a huge lump in my throat as anything is possible with this kiddo and this disease and my mind went to places I had to work real hard on counteracting with my meditation strategies due to stress, lack of sleep, etc...PT got Emily up and moving very slowly after the MRI. Emily was not happy and started reciting old sayings of phrases and such that we have heard before and breaks your heart, but mama lion had to nip it in the bud and bring out the tough love with an edge of empathy to help motivate her and keep her mind right. This part of the "job" is never fun or easy, especially clear across the country on your own, but necessary and it seemed to have worked. We were discharged to the RMDH Thursday late afternoon ( grabbed the hardware as Emily and I really wanted it for a few reasons) and then left for home Fri afternoon. Thank goodness for nice people in the airport and that Emily is a super travel partner despite the pain. We sat next to another great guy on the way home- divine intervention- with some connections and we are looking forward to our future collaboration with him as well! ( he kind of reminded Em and I of Clark Kent and even had on RWB socks- just saying...)
Emily has made great strides even in the day or so we have been home! Literally. She is walking with better steps with her walker and us behind her as she has to heal- there are holes now where the hardware was that need to fill with bone over the next six weeks, so her bones are fragile and falling would not be good at all!!
Well, there ya have it- Three Jam packed months of crazy busy fun,and some not so fun and in between all of that was doctor appointments, IVIG treatments/labs, therapies, and school and life in general.
As always we appreciate our followers and try to keep up as it won't be slowing down any time soon! SO MUCH coming!
BIG NEWS COMING ABOUT SIOD collaboration! WATCH FOR IT HERE!
