Journal entry by Mariah Heidegger —
November:
After my last update kysons itching got worse, it was a really rough few weeks but by the end of november it was completely gone.
December:
Kysons liver labs got worse. No itching 🙂 the GI doctor decided its time to bring in the Seattle Liver Team and do an MRI. He felt that Kyson needs doctors that specialize in rare pediatric liver diseases.
January:
Kysons labs got better😊 the ursodiol is helping him but still concerning that his labs go up and down. On the 14th he had an mri. Kysons mri results are good. His liver is bumpy in some parts from his labs fluctuating and is inflamed but this is what we expected. There isn't significant damage which is good, especially because at his biopsy at 3 months old he was already showing scarring.
Dr. Horslen(seattle doctor) has a new plan to figure out what is wrong and how to help. There is a study funded by the NIH that Kyson will be a part of. They will first draw a bunch of blood and send it to San Francisco and London. They will look at all of DNA and hopefully find the name of his disease. They do this by looking at gene mutations. If that dont give us an answer they will do a bigger one and send that to them as well. This will all be a long lengthy process but it's so relieving to know we are moving in the right direction. In the meantime we keep Kyson on Ursodiol and continue our waiting.
After my last update kysons itching got worse, it was a really rough few weeks but by the end of november it was completely gone.
December:
Kysons liver labs got worse. No itching 🙂 the GI doctor decided its time to bring in the Seattle Liver Team and do an MRI. He felt that Kyson needs doctors that specialize in rare pediatric liver diseases.
January:
Kysons labs got better😊 the ursodiol is helping him but still concerning that his labs go up and down. On the 14th he had an mri. Kysons mri results are good. His liver is bumpy in some parts from his labs fluctuating and is inflamed but this is what we expected. There isn't significant damage which is good, especially because at his biopsy at 3 months old he was already showing scarring.
Going forward Kyson will be mainly seen by the Seattle Liver Team. If there is anything we can do in Spokane then they will coordinate with his GI here to minimize traveling back and forth. We don't know yet how often our appointments will be or when our first one is.
It has been a year since we started we first found out something was wrong, through it all Kyson has been so strong and brave. Although it breaks my heart for him to go through everything it's a comfort to me knowing that God has given us brilliant doctors and nurses with Kyson's best intentions at heart. Thank you everyone for all the prayers and words of encouragement. Please continue to remember the three of us in prayer.
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