Today I counted a lot of blessings. We had a full day of appointments with Taylor and I think we're all tired, but relieved. She was a little trooper - we were at various appointments, or waiting, from 10am-3pm today - quite awhile for a little one. This is a picture of her at the endocrinology appt.
We started the day at Children's Hospital and once again, we were reminded how blessed we are and how much we have to be thankful for. It was crowded today and we were in various parts of the hospital (speciality clinics, lab, x-ray) and saw so many kids dealing with so much. Our lives seem infinitely easier than what many of those poor kids are facing.
Our first apointment was with Dr. Helen Dilchek, an endocrinologist. At first she seemed a little loopy to us, but quickly became endearing. She did a great job educating us about the endocrine system and was very optimistic about Taylor. She had seen a number of kids with Septo-Optic Dysplasia and after examining Taylor, she said that Taylor looked very normal to her. Particularly compared to many kids that she has seen with this condition who have serious vision problems (including blindness) and deformed heads (due to abnormal brain development). She described that Taylor's posterior pituitary is supposed to have a "bright spot", which was weak on her MRI - which may be a normal variant, or could cause problems for Taylor. The posterior pituitary regulates the antidiuretic hormone (also known as diabetes insipidus) and growth hormone. The antidiuretic hormone essentially helps the body control water, so if there was a deficiency, you could become severely dehydrated, or ill, without proper care. Growth hormone simply helps regulate growth. Both of these hormones may be at risk based on her MRI, or may be fine. In any case, they can be controlled with medication if needed (pills for the antidiuretic hormone and shots for growth hormone). Side note - this is a great example of the evils of the Internet - I had stumbled across diabetes insipidus on the Web from her medical records and assumed it was the diabetes that we're all familiar with. It's not - it's simply the way the body controls water and it's easily regulated with medication vs. the dangers of the more common form of diabetes. Anyway, Taylor's anterior pituitary appears normal on the MRI, which is great, because this is where the thyroid hormone and cortisol/adrenal hormones are controlled.
Taylor had a blood draw to check her endocrine system for electrolytes, antidiuretic hormone, growth hormone, cortisol and thyroid hormone. This took 3 large vials of blood. This was the worst part of the day. The technician had a hard time finding a good vein in her arm and it was really sad to watch. Taylor was not a happy camper. Finally, they found a good vein in her hand and got the necessary vials - or so we thought. Unfortunately, we found out later in the afternoon that they stored one of the vials incorrectly for the particular test (it needed to be frozen), so we had to go backfor another blood draw. Taylor once again proved her intelligence by promptly wailing when David sat down with her in the blood draw chair for the second time - smart girl - she knew it was not going to be fun. We also had an X-ray of her hand done to get a baseline report for future growth hormone exams. All in all, a lot to digest but a positive appointment. We should get the test results back in 2 weeks and we'll do a follow-up appointment with the endocrinologist in 4-6 months. This was also a relief - we weren't sure how much we would need to see each specialist. This is one area that even if the test results come back normal, a condition could develop over time, so we'll need to carefully watch for certain symptoms.
After conquering the endocrinologist, we went to Dr. Cadera, our opthamologist. We was very kind and caring since we hadn't seen him since Taylor's MRI. He also was very positive and said he thought she would live a great life. He dilated her eyes and extensively looked at her optic nerve in each eye - both were totally normal. This is so huge and a great sign for her future vision. He said most kids with Septo-Optic Dysplasia have damaged optic nerves and this is why vision problems (some severe) can result. From his point-of-view, he said her eyes were totally normal and her eyeballs look perfect. She tracked, or followed, his light and toys much better today and he said she looked like a totally different kid since the last appointment 2 months ago. She has definitely started reaching for toys more in this timeframe. While it's fantastic news that her eyes are normal, as he explained, it's only one part of the equation. Since vision is controlled by the brain, her eyes can be normal, but still be developmentally delayed. The good news is that she doesn't have any structural issues that could be permanently harmful for her. We can hope as she grows and receives therapy that her brain will catch up with her eyes and she will continue to make good progress. We're hopeful this will be the case.
So, based on both appointments, we're feeling positive today and anxious to meet with the neurologist next week, who we hope will connect the dots. It may be that Taylor doesn't have Septo-Optic Dysplasia - instead - she was simply born without her corpus collosum and septum pellucidum in her brain. She will still need the same therapy related to development delays, but some of the scary scenarios could be taken off the table.
Phew....lots of long-winded explanations, but wanted to share the latest. Taylor didn't have her first physical therapy session yesterday as planned. We had miscommunication from the Boyer Clinic, where our family resource coordinator said we would have the session, but the therapist wanted to wait until after our Individual Family Services Plan (IFSP) meeting tomorrow. This was a drag because we were eagerly awaiting getting her therapy started, but we'll be ready to go next week.
We also received a huge gift last night when my mom and sister, Shawna, arrived. Our spirits are lifted and it's always fun to watch the kids run around and provide updates on the most important parts of their lives (so far - our trip to Disneyland, various friend updates, new skills learned and shown off, seem to be leading the pack).
Today I feel hopeful and thankful. After seeing others in far worse shape today, it's a telling reminder to embrace the gifts we have. This scare with Taylor is also a reminder to treasure Lauren and Jake, and all of our health - which can be fleeting. I read something powerful today, "Worry wastes time." So simple, but so true. What a shame it would be to get consumed with worry and miss the joys of our everyday life. Even if Taylor walks a year behind her peers, she will still walk and I could miss a year of smiles and laughter if I worried deeply every step of the way. I'm going to try to hang on to this optimism and enjoy every moment. More food for thought:
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23.
We started the day at Children's Hospital and once again, we were reminded how blessed we are and how much we have to be thankful for. It was crowded today and we were in various parts of the hospital (speciality clinics, lab, x-ray) and saw so many kids dealing with so much. Our lives seem infinitely easier than what many of those poor kids are facing.
Our first apointment was with Dr. Helen Dilchek, an endocrinologist. At first she seemed a little loopy to us, but quickly became endearing. She did a great job educating us about the endocrine system and was very optimistic about Taylor. She had seen a number of kids with Septo-Optic Dysplasia and after examining Taylor, she said that Taylor looked very normal to her. Particularly compared to many kids that she has seen with this condition who have serious vision problems (including blindness) and deformed heads (due to abnormal brain development). She described that Taylor's posterior pituitary is supposed to have a "bright spot", which was weak on her MRI - which may be a normal variant, or could cause problems for Taylor. The posterior pituitary regulates the antidiuretic hormone (also known as diabetes insipidus) and growth hormone. The antidiuretic hormone essentially helps the body control water, so if there was a deficiency, you could become severely dehydrated, or ill, without proper care. Growth hormone simply helps regulate growth. Both of these hormones may be at risk based on her MRI, or may be fine. In any case, they can be controlled with medication if needed (pills for the antidiuretic hormone and shots for growth hormone). Side note - this is a great example of the evils of the Internet - I had stumbled across diabetes insipidus on the Web from her medical records and assumed it was the diabetes that we're all familiar with. It's not - it's simply the way the body controls water and it's easily regulated with medication vs. the dangers of the more common form of diabetes. Anyway, Taylor's anterior pituitary appears normal on the MRI, which is great, because this is where the thyroid hormone and cortisol/adrenal hormones are controlled.
Taylor had a blood draw to check her endocrine system for electrolytes, antidiuretic hormone, growth hormone, cortisol and thyroid hormone. This took 3 large vials of blood. This was the worst part of the day. The technician had a hard time finding a good vein in her arm and it was really sad to watch. Taylor was not a happy camper. Finally, they found a good vein in her hand and got the necessary vials - or so we thought. Unfortunately, we found out later in the afternoon that they stored one of the vials incorrectly for the particular test (it needed to be frozen), so we had to go back
After conquering the endocrinologist, we went to Dr. Cadera, our opthamologist. We was very kind and caring since we hadn't seen him since Taylor's MRI. He also was very positive and said he thought she would live a great life. He dilated her eyes and extensively looked at her optic nerve in each eye - both were totally normal. This is so huge and a great sign for her future vision. He said most kids with Septo-Optic Dysplasia have damaged optic nerves and this is why vision problems (some severe) can result. From his point-of-view, he said her eyes were totally normal and her eyeballs look perfect. She tracked, or followed, his light and toys much better today and he said she looked like a totally different kid since the last appointment 2 months ago. She has definitely started reaching for toys more in this timeframe. While it's fantastic news that her eyes are normal, as he explained, it's only one part of the equation. Since vision is controlled by the brain, her eyes can be normal, but still be developmentally delayed. The good news is that she doesn't have any structural issues that could be permanently harmful for her. We can hope as she grows and receives therapy that her brain will catch up with her eyes and she will continue to make good progress. We're hopeful this will be the case.
So, based on both appointments, we're feeling positive today and anxious to meet with the neurologist next week, who we hope will connect the dots. It may be that Taylor doesn't have Septo-Optic Dysplasia - instead - she was simply born without her corpus collosum and septum pellucidum in her brain. She will still need the same therapy related to development delays, but some of the scary scenarios could be taken off the table.
Phew....lots of long-winded explanations, but wanted to share the latest. Taylor didn't have her first physical therapy session yesterday as planned. We had miscommunication from the Boyer Clinic, where our family resource coordinator said we would have the session, but the therapist wanted to wait until after our Individual Family Services Plan (IFSP) meeting tomorrow. This was a drag because we were eagerly awaiting getting her therapy started, but we'll be ready to go next week.
We also received a huge gift last night when my mom and sister, Shawna, arrived. Our spirits are lifted and it's always fun to watch the kids run around and provide updates on the most important parts of their lives (so far - our trip to Disneyland, various friend updates, new skills learned and shown off, seem to be leading the pack).
Today I feel hopeful and thankful. After seeing others in far worse shape today, it's a telling reminder to embrace the gifts we have. This scare with Taylor is also a reminder to treasure Lauren and Jake, and all of our health - which can be fleeting. I read something powerful today, "Worry wastes time." So simple, but so true. What a shame it would be to get consumed with worry and miss the joys of our everyday life. Even if Taylor walks a year behind her peers, she will still walk and I could miss a year of smiles and laughter if I worried deeply every step of the way. I'm going to try to hang on to this optimism and enjoy every moment. More food for thought:
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23.
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