Saturday, November 7, 2015

a perfect 10!


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 tallHe 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 

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