Nana and Papaw; Kyra; skin, new button, and upcoming procedure; hope for easier feedings; Dad solo

Last week, my mother and step-father visited. She hadn't seen Loki (in person: there have been video chats) since the week he came home, and he had never met him. Loki was immediately warm towards them, without any stranger anxiety. Perhaps he recognized his Nana and Papaw from the video chats, or could just feel the atmosphere. It was great to see them together, and hopefully it can happen again soon.

On their last day here, Mom's close friend Kyra arrived from the Netherlands for a week's stay. Coincidentally, she was also last here when my mom was here and Loki came home. She has already been a big help, such as watching him this morning so both Mom and I could get some sleep.

For a few months, we've been taping Loki's tube to his skin so that it doesn't slip out. But now his skin around his button is sore. Mom took him to the emergency room in San Francisco as a means of getting him to be seen by one his gastroenterologist, Dr. Perito. She gave us a prescription cream for Loki's skin and told us that we need to be careful continuing the taping. To that end, Loki will have the new style of button--a Mic-Key, which can lock the tube in place--installed at UCSF on Friday. This will require a quick procedure (not really a surgery, as there's no cutting). He does have to be put under general anesthesia most likely to get the old button out, but won't need to stay overnight. I have to work, so Mom and Loki may be joined by Kyra for this.

There is some good news in the feeding department. Until now, Loki has not been getting enough calories with his pumped formula and milk feeds. When we tried to increase the concentration or volume of feeds, he would throw up. Now, Mom is experimenting successfully with giving him a thick, high calorie mixture of rice cereal and formula via a large syringe. He is able to keep this down, despite each feeding being almost double the calories of the formula. We think this because it is so heavy that it can't come up. We then must give him extra water. Another advantage is that, when he is awake and moving around, giving him a few milliliters via syringe every few minutes over the course of two hours is easier than chasing him around with his pump on a pole. Plus, this is more like getting meals: he gets a few big feeds during the day, and little (if any) overnight. If this works out, Loki can get all his calories in five syringe feeds during the day, one pumped feed in the evening, and then an overnight pump of mainly water in order to keep him hydrated. We hope this will reduce his overnight fussiness, although so far this has not been the case. In addition we hope this will finally add some weight to his little body (he weighs 8.63 kg or a little over 19 lbs).

Monday evening, Mom, Kyra, Rebecca will fly down to the Los Angeles area where they will meet up with nurse Margaret (!) and go to Disneyland. Even better, Mom's cousin will help with admission and they will hopefully get a chance to see her and her family, as she works at Disney. This is exciting, as it is Mom's first vacation away from Loki. Myself, I am nervous about being alone with Loki. They will return Wednesday evening.

Nana and Papaw:

Three generations:

 

Happy with Papaw:

 

Mom is best:

 

With Dad:

Fam:

Reflecting:

 

Mmmm, paint:

 

Nom nom nom straw:

 

Smiles:

 

(Little) Big man: