Titus slept the ENTIRE night last night!! We are very thankful.
I had to wake him up at 6 am so we could get his bath and wet wraps done in time to take him out of his wraps by 9 am. Our nurse Emily wanted to get an early start on food challenges today. He was actually hard to wake up – so different than before we came to NJH! His cheeks were rosy pink this morning – we’re still not sure why. They seem to change colors several times throughout the day. Once he was wet-wrapped, I was able to get him to take a 20 minute nap before we left the house.
We arrived at the hospital around 8:30. Dr. Dutmer came and visited with us early in the morning. He would like to have Titus challenge potato and corn today. We also talked about what other foods we might want to challenge on Thursday and Friday before we leave. Tomatoes, butternut squash, broccoli, and beef are possibilities.
Titus got started with the white potato challenge in the morning. So far we have had no trouble getting him to eat the challenge foods. He is always exited to eat new things. 🙂 He passed white potato with no problems.
During the two hours wait after the challenge, we ate lunch and tried to get Titus to take a nap. The doctors have had us reduce the number of baths to two per day, one in the morning and one at night, so midday we just lotion Titus up with no bath. This works fine, except he seems to have become accustomed to sleeping in his wet wraps. We did not have success getting him to take his nap in his clothes. Finally we gave up.
Lauren came and did one last skin prick test between the two challenges. This test was for butternut squash, tomato, onion, garlic, and a couple others I forgot. We are excited that he tested negative to butternut squash, tomatoes, and onion. We hope the tomatoes will work out as that would add so much to their diet!
Next we started the corn challenge. I had specifically asked for organic corn, so they let us buy our own corn at Sprouts across the street. Linda went and bought that for us. Our nurse Emily warmed it up and pureed it for the challenge. Titus did great with the first spoonful, but wasn’t excited for the larger dose 20 minutes later. After the first two doses, we noticed a strange, webbed rash seemed to be appearing on his back. The doctor came in to look at it, and decided we should wait another 30 minutes and if nothing changed, we would repeat that dose.
Thirty minutes later, the rash had faded so he got second dose. He still didn’t want to eat it, but we were able to coax him to take it. This time we couldn’t see any reaction, so the challenge continued. Linda thought maybe the corn needed a little bit of salt, and when we tried that he started taking it much better. He passed the rest of the corn challenge. It is still a mystery what the weird rash was. It could have been from the skin prick test.
Because of the delays, the corn challenge wasn’t over until 5:30 pm. We were already exhausted from the long day, especially Titus, but we had to wait at the hospital another two hours just to be sure there was no reaction. Titus was able to fall asleep while nursing, so he did get a nap during this time. Mariya and I got cat naps, too.
At 7:30 everything still looked fine, so we headed home. Titus seemed a bit more itchy in the car, but we thought maybe it was just that he was so tired. During his evening bath, it seemed like his back had more of a rash again. We took pictures to show the doctor tomorrow. It also took a few more minutes than normal to put him to sleep. All of these signs make us think he might be reacting to the corn, but then again, maybe he was just over tired.
Please continue to pray for Titus and the rest of us as we finish the last two days of the program. Any reaction to the food challenges could seriously delay any progress. We are very thankful for the foods he has already passed. Both Titus and Mariya have been enjoying some of the new foods.
Today, Dr. Dutmer said, “I’m gonna miss Titus, he’s adorable!” Titus will probably miss him and the other staff, too. He really likes it here at the hospital. One morning this week, he was the first one at the front door of the house letting us know it was time to go to the hospital. We appreciate all the help the doctors, nurses, and staff have been to Titus and our family. We also appreciate all of our family and friends who helped make it possible for us to come here. It definitely looks like this will be a turning point for Titus in many ways.
Thank you for your prayers and support.