Wednesday, January 30, 2019

Nathaniel's holiday trip to Ft. Worth

Seth needed to have surgery on Nathaniel's birthday in order to get his pheresis cathether placed. We knew we wouldn't be able to spend any time together as a family on that day. We were also going to be spending a lot of time at MDA for Seth's first photo appointment on January 2. Will and I were stressed and couldn't handle the idea of having family stay at our house and celebrate Nathaniel's birthday. We felt like it would be better if Nathaniel and my mom flew to Ft. Worth to stay with the rest of our family. My sister always does a great job of entertaining Nathaniel and we knew that Nathaniel would have a blast. I'm thankful that Nathaniel enjoyed this fun trip over his birthday weekend. I missed him terribly, but I wouldn't have been able to give him any attention with all of Seth's medical needs at that point.

This was at a Dinosaur Park









Perot Museum








A fun indoor playground
A few more at Dinosaur World

Breakfast at Beacon Hill
Playing Games at Aunt Hill's house


Wednesday, January 9, 2019

January 2019

January was a very difficult month. Getting everything organized for Seth to start photopheresis was very stressful. We were so sad that we were spent Thanksgiving, Christmas and now New Year's at the hospital. The weather was gray and dreary. But we were thankful to have time with Seth.

Jan 2 Ambulance to MDA; 1st photo treatment
He took a nap on the ambulance stretcher in the hallway because clinic was full; I stood there the whole time he was asleep and held his hand.

Jan 3 - recovering from a long first day at MDA

Jan 4


Jan 5 - we celebrated N's birthday at hospital


Nathaniel brought Seth a dino puzzle from DinoWorld


Jan 6
Nathaniel playing with Christmas gifts


Jan 7
He had the bruise from his pheresis catheter for at least  6 weeks

Jan 8 - we got to see the window washers!


Will gave Seth a little haircut to trim up a few of the long hairs that didn't fall out.




Jan 9



Jan 10 - PT in the cube chair







Jan 11 - Robot Jacket




Jan 12







Jan 13
Nathaniel and I took a walk to Rice Village and enjoyed some crepes and waffles



Jan 14


Jan 15
"Meat Sweats!!"












Jan 17

Sat Jan 19




Sunday Jan 20


Will helped Seth to write his name in Seth's new book while I was gone. Seth was so proud!


A late Sunday night dressing change. Seth waited until I was back at the hospital to help him with his dressing change.
Jan 22 - Tuesday at TCH - therapy day before MDA Photophoresis







Jan 23




Jan 24
Nathaniel had endured a hard day at school the previous day, so we pulled him out of school for a special Thursday visit. It lifted everyone's spirits.


Jan 25 - Shawn gave Bacon to Seth. Bacon rode home with Will to get a bath.

 Jan 26


 Putting together Batman/Poison Ivy kit
Jan 27



Jan 28
Tues Jan 29 - resting from photo


Jan 30 - MDA with Slippery the Seal (from Shawn)



Jan 31