Last night was an ok night. Titus went to sleep about 9:30 pm, but then woke up at 10 and again at 11:30. After that, I (Matthew) rocked him to sleep and slept with him at my side with his head resting on my arm. This apparently comforts him as he sleeps much better. The next time he woke up was 3 am – he probably woke up because of me – I got really uncomfortable with his head on my arm, and finally had to pull it out and he woke up. I showed him Masha and the Bear cartoons, and he finally went back to sleep and didn’t wake up until morning.
Today was a very early day for us, as the doctors wanted to test Titus’ swallowing function with different foods at 7:10 am. We had mentioned that he sometimes has a gag reflex with certain foods. We also had to bring some of the problem foods with us for the test. Titus couldn’t eat or drink anything for four hours before the test, so we were a little nervous about that. He usually nurses right away when he wakes up in the morning. He did very well though, and I was able to get his wet wraps off and lotions on by myself with almost no itching. I tried to keep him from seeing much of Mariya so he wouldn’t get upset.
We arrived at the hospital at 7 am, checked in, and went to our room. We were just about to go meet our nurse to go to where they do the swallow test when they came to our room and let us know that the swallow test machine was broken. 🙁 Basically we got up early, prepped Titus’ problem foods, and arrived at the hospital at 7 am for nothing. The test is now scheduled for next Tuesday…..if they schedule it for 7 am again, I think I will see if they can move it later. We have to drive 30 minutes to the hospital, and it is hard to get both babies ready to go out the door by 6:30 am.
We all had breakfast and then we got Titus ready for his first bath of the day. After his bath, he took a short 30 minute nap and then Charlie woke him up by crying. He has to stay in his wet wrap for 2 hours every time, so I kept him entertained for a while by taking him out in the halls and looking at pictures, going on wagon rides, and talking to other patient parents.
At 11, there was a parent meeting about dealing with chronically ill children. Mariya went to that while I took off the wet wraps and got Titus ready for his first skin prick test. He didn’t like being poked, but it was pretty fast with only about 20 foods being tested today. Tomorrow they will test about that many more, and the next day or two after that they will skin prick test environmental irritants like dust, mold, pollen, etc. Skin prick tests are notorious for being unreliable, but the doctors will compare them with the blood tests and other tests that they do here. Today’s test showed a reaction to beef, egg, dairy, wheat, and buckwheat. It showed no reaction to kidney beans and chicken. There were other foods tested too, but we don’t have a copy of the results and I didn’t see them all. He had a reaction to less than half of them, so that is encouraging. I did ask the doctor about beef, since he/mom have been eating it all along, and he said to go ahead and keep eating it for now. He said sometimes kids show allergic to beef when they’re really allergic to milk. There’s some kind of relationship there. We’ll know more after the blood tests.
Mariya reported that the class she attended was good. She said they all cried quite a bit. Another lady there mentioned that her insurance may not cover the hospital stay either.
We all had lunch, but this time the kitchen messed up on Titus and Mariya’s food! Mariya’s tray had potato chips, milk, and a dessert on it, while Titus’ tray had salmon that had been fried in olive oil and had pepper all over it. 🙁 They fixed it for us. I’m sure the kitchen here is going to hate us after our two weeks.
After lunch, we delayed Titus’ bath a bit to try to get him to nap while we went to a parent class on eczema. He naps much better if he is in wet wraps. This time he slept a lot better, but he still woke up after about one hour. The eczema class had some beneficial info, but also a lot of things that we had already heard.
When we returned to the room, Titus had woken up so I sat and listed to some kid stories on YouTube with him. He fell asleep on my lap for the remainder of the two hours.
Dr. Rabinovich took a look at Titus after he woke up. He is pleased with the progress.
On the way home, we stopped by sprouts to buy more food. Our hosts have been wonderful, providing Linda and I with unlimited gourmet food every evening. We’re probably going to gain some weight on this trip.
Please pray things continue to go well and that Titus will be much, much better by the time we return home. Thank you for your prayers and support.