We celebrated Peter’s 10th birthday a week
ago! His birthday is on All Saints’ Day,
the day after Halloween. He had a great
weekend, trick-or-treating as a knight and then a birthday party with lots of family the next day.
 |
| the brave knight |
 |
| a happy 10th birthday |
Peter has been feeling good and growing tall. He has become much more interested in
playing with traditional toys for boys this last year – cars, trucks, Legos.
His favorite go-to items are still books, particularly geography books,
atlases, and travel books, but he is definitely incorporating more play into
his daily activities than he used to.
Feeding therapy last fall/winter/spring definitely paid off. Peter took a break for the summer, but the learning continued on its own and he is now eating two meals a day that involve real chewing. He is still slower to eat during many of the meals, especially when there are veggies or meat he doesn't like as much, but progress continues.
Peter went to Boston Children’s Hospital for his check up in
August. The hepatologist started
Peter on lasix (furosemide) in August. The hope is to reduce Peter's
ascites and let him eat more sodium than he has been eating. One of
Peter's chief complaints with food has been the desire for flavor and
even with huge amounts of spice, the absence of salt still keeps a lot
of foods "tasteless" in his words. I don't see that the ascites has
really left, but adding more sodium to his low-salt diet hasn't
increased his ascites visibly either, so the lasix must be doing what we
had hoped.
His upper endoscopy was good
with no need to band the small varices that he has. When labs were drawn, his INR was up to 1.6
from the 1.3 value he had a few months ago, and that caused some concern.
However, the hepatologist felt we should try a dose of high-dose vitamin K to
see if that would reduce the INR, since we know that Peter has trouble
absorbing other fat-soluble vitamins. (On 8000 IU of enteral vitamin D per day,
his vitamin D level is still not as high as desired, for example.) We had tried this almost a full year ago with
no real response, but it seemed worth another try. If the INR stayed up, then it was likely that
the liver is declining in function and is getting increasingly cirrhotic. If
the INR responded, then the liver, while not exactly healthy, is still working
well enough and the elevated INR was due more to intestinal malabsorption than
declining liver function. Peter received
the vitamin K intramuscularly and when the labs were drawn several days later,
his INR had decreased back down to 1.3!
Success!!! The plan now is for
Peter to receive vitamin K intramuscularly every month.
Peter is in the process of getting the color of his teeth
addressed. He had a couple bleaching
sessions that ended up not changing tooth color at all. Then, when at U of PA
for an orthodontic consult, we were asked if we would like to address the color
of his teeth. I nearly fell over at the question, as I have been asking and
asking for help with the teeth color over the years, and here I was approached
instead. So far, we are just working on the top two front teeth. I’ll post
photos once they are done, but the process is taking more than one day to
complete due to Peter’s inability to stay still long enough in the dental
chair.
In case you might be wondering where Peter's glasses are in the above photos, they are sitting broken in his glasses case as we await a replacement pair. He had a mishap with a blanket in the living room and that was the end of that pair of glasses. :/
A few more photos from the year to add to the update...
 |
| a long-anticipated view from the Top of the Hub in the Prudential Center, Boston |
 |
| first visit to the beach |
 | |
| loving the rides at Hershey Park |
No comments:
Post a Comment