Jonathan is doing well. He really is a fantastic kid. I know he’s mine and all parents think their kids are fantastic, but he amazes me everyday. He handles chemo like a pro and now at home, he is hooked up to four
machines. One for his gastric tube in his nose that sucks out all the food that he eats (since he has a bowel obstruction), a machine for his TPN, one machine for his lipids, and one machine for his Hydromorphone (pain medication). As for me, I’m quite busy. The home nurse has taught me how to do everything so I am basically a nurse, without a nurses degree. The TPN needs to be mixed everyday because some of the vitamins expire in 24 hours so I sit in the kitchen and syringe his vitamins and mix them into his TPN bag. I hook up his IV poles and change his lines everyday. I always wanted to be a nurse when I was younger. I guess in a way it’s always been my calling:)
Jonathan continues to build Legos everyday. He is in good spirits. The only difference right now is that he’s totally lost all his hair again and lost some weight. I pray every night that his bowel obstruction will somehow open up and heal itself. If it wasn’t for the gastric tube, he would be able to move around more frequently as the other machines are portable. Right now he sits all day in the living room building and napping. The other night he was watching his brother, sister, and cousin running around and he said that he wished he could move around. I said that he could, we could stop the gastric suction for a little bit, but he said he wanted to move around without any tubes. I haven’t gotten him outside yet, but we just got some patio furniture so hopefully in the next couple of days we will take him outside to breathe some fresh Colorado air.
Next week is another round of chemo. Hopefully all goes well and smoothly.
Justin and Jena are adapting very well. Jena absolutely loves school. She’s the smallest in her class, but she’s a spitfire.
Anyway, I hope that everyone is enjoying their summer. Remember to be thankful everyday. I am very thankful for my family, and for all my friends (some who’ve I’ve met and some who I hopefully will meet). Keep the faith and stay positive.