Health Reports
We've been in Utah this week getting our fill of Immunology. Our sweet Immunologist, Dr. Gundlapalli is leaving us. I hate goodbyes more than anything, especially when I have to say goodbye to such an amazing doctor who has saved at least one of my children's life. I managed to pull it off without any drama or tears. I will miss him though. He was offered an amazing position with the Center For Disease Control in Atlanta, Georgia.
The day we first met Dr. Adi Gundlapalli, I felt as though a burden, bigger than me, had been lifted and for the past few years, he has helped me carry that load. Shelbie and Sam are doing so great from an infection and immune standpoint because of his wisdom. We don't love weekly transfusions but they are keeping the kids from overwhelming infections. I've been worried about who I would find to replace him and apparently, so was Dr. G. He was kind enough to give us a couple of options for providers that he felt would be a good fit and then we got to choose...well, I chose. So, our new doc is a 78 year old Immunologist. That's not a typo, he's 78 years old. I fully realize he won't be around for a long time, but the idea that he has 40 years of immunology experience under his belt and he has doubled his clinic size this month, and he's working because he wants to be, because he loves what he does and loves his patients, he was the obvious choice.
We will officially meet him in 3 months when we head back. We were able to make great strides in our GI situation. Our doctor literally walked out on us 2 years ago. It's a mystery what happened but due to unending political issues with the GI department at the U, I haven't been able to get another doctor to see us. With the help of our Neuro-Immunologist, we now have a GI doc. She had to pull some serious strings but I think it will work out. So, let's hope it all falls into place the way we are hoping.
And...our Neuro doc consented to seeing the boys! This is such great news because now we can actually follow up on Sam's Chiari Malformation in his brain and Spencer's issues with passing out. I've asked her in the past if she would accept the boys into clinic but she was never keen on it. Finally, this week, she felt it was important to see them all. So we have that 5 hour appointment scheduled in November. They are adding a second medication for Shelbie. Another seizure med with the hopes that it can cover the seizures and headaches not being managed by the Lamictal. They also enrolled her in a specific genetic testing program that will test for genes related to granulomatous disease. We'll see what comes of that.
I felt like it was a productive week. It felt very strange to get back into the swing of things and again, I was reminded of how much I have let slide the past few months. The world of chronic illness is hard and contrary to what you might think, it doesn't get easier because we are use to it. The emotions run deep. Day to day, it's not always easy to see or maybe admit that things are getting worse but when we spend a few days at the hospital, it becomes painfully obvious. We'll have some emotional work to do to get over that but all in all...we had a positive experience.
The day we first met Dr. Adi Gundlapalli, I felt as though a burden, bigger than me, had been lifted and for the past few years, he has helped me carry that load. Shelbie and Sam are doing so great from an infection and immune standpoint because of his wisdom. We don't love weekly transfusions but they are keeping the kids from overwhelming infections. I've been worried about who I would find to replace him and apparently, so was Dr. G. He was kind enough to give us a couple of options for providers that he felt would be a good fit and then we got to choose...well, I chose. So, our new doc is a 78 year old Immunologist. That's not a typo, he's 78 years old. I fully realize he won't be around for a long time, but the idea that he has 40 years of immunology experience under his belt and he has doubled his clinic size this month, and he's working because he wants to be, because he loves what he does and loves his patients, he was the obvious choice.
We will officially meet him in 3 months when we head back. We were able to make great strides in our GI situation. Our doctor literally walked out on us 2 years ago. It's a mystery what happened but due to unending political issues with the GI department at the U, I haven't been able to get another doctor to see us. With the help of our Neuro-Immunologist, we now have a GI doc. She had to pull some serious strings but I think it will work out. So, let's hope it all falls into place the way we are hoping.
And...our Neuro doc consented to seeing the boys! This is such great news because now we can actually follow up on Sam's Chiari Malformation in his brain and Spencer's issues with passing out. I've asked her in the past if she would accept the boys into clinic but she was never keen on it. Finally, this week, she felt it was important to see them all. So we have that 5 hour appointment scheduled in November. They are adding a second medication for Shelbie. Another seizure med with the hopes that it can cover the seizures and headaches not being managed by the Lamictal. They also enrolled her in a specific genetic testing program that will test for genes related to granulomatous disease. We'll see what comes of that.
I felt like it was a productive week. It felt very strange to get back into the swing of things and again, I was reminded of how much I have let slide the past few months. The world of chronic illness is hard and contrary to what you might think, it doesn't get easier because we are use to it. The emotions run deep. Day to day, it's not always easy to see or maybe admit that things are getting worse but when we spend a few days at the hospital, it becomes painfully obvious. We'll have some emotional work to do to get over that but all in all...we had a positive experience.
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