Just a quick note before the main post about today: Titus is much, much better than when we came here. We are very thankful. He can now play by himself while Mariya and I do other things – we don’t have to constantly stop him from scratching. It’s also much easier to feed him – he can sit on your lap and eat without you having to hold his arms down from scratching. He also sleeps much better – when he does wake up, it is only for a few minutes and then he is back asleep. He is very happy and active and is enjoying what it is like to feel better with no itches.
Today we got up and got Titus bath started at 7am so we could start food challenges earlier at the hospital. Titus looked a little better this morning, but still pink. He pooped in his bath for the second day in a row. 🙁 I guess he thinks that is the first order of business each morning. That delayed us a little as we had to clean him, his toys, and the tub.
We were able to leave the house about 8:10. Once at the hospital we were anxious to start food challenges, but Titus had to wait until his two hours of wet wrap was over. Doctor Dutmer did come in to talk with us a little bit. He said if the skin was pretty good, we would challenge rice milk today. He is pretty confident Titus will pass this challenge. He said if the skin was just so so, we might wait until tomorrow to start food challenges. We were very anxious at this point, because Mariya and Titus really want to eat more foods, but since we’ve been here they’ve already lost beef.
We got Titus out of his wraps about 9:40 and our nurse Emily came in to look at him. She also had a nurse in training with her. She said we would have to wait and see what the doctor said, but she was ok with doing food challenges with his skin looking the way it did!
After that we waited, and waited, and waited for the doctor. Finally he came in around 11. He said it looked ok to him, and so we will do the rice milk challenge!
By 11:30, the rice milk still wasn’t here and we could tell Titus was getting very tired. He is extra itchy when he is tired. The nurses brought the first dose of rice milk, but we decided to wait until after his morning nap to start. He needs to be awake for 1 hour and 40 minutes for the challenge. We lotioned him up with vanicream and Mariya nursed him to sleep. He usually doesn’t sleep well at all now if he doesn’t have a wet wrap.
Mariya is also really tired today. Charlie seems to have an upset stomach at night, so she doesn’t get much rest. All the stress of Titus skin and food challenges is also wearing her out. She is doing amazing anyway, and I am proud of her.
While Titus napped, Linda and I got some lunch at the cafeteria. When we got back, Titus woke up (only a 30 minute nap). He was cranky which was making him red, so we waited a bit and Mariya nursed him. I let the nurses know he was awake, and they told me to have him stop nursing right away. He shouldn’t have any other food or drink during the challenge. This was a pain, because it was right at lunch time, and we all had our lunch to be eaten and Titus couldn’t eat.
The challenge started out with only 3 mls of rice milk, and worked up every 20 minutes to a full serving of 60 mls by the 5th round. Titus didn’t like it at all the first two times, and we basically had to force it down. He enjoyed the 3rd and 4th serving, but the 5th one was way too much and he was tired of it. He did drink it all though, with some assistance. When the nurses came back later to do a nasal wash, Titus wanted more rice milk and he signed “eat” and “more” to them. Poor guy got a torturous nasal wash instead. 🙁 This helps get rid of any bacteria that might be in the nose contributing to redness of the face.
Titus did pass the rice milk challenge, so he and Mariya can both have rice and rice milk now! They are excited.:-)
After the nasal wash, Dr. Dutmer came in one more time to see Titus. He wonders if the ointment we were using on his face might be irritating it, hence the redness, so he gave us a prescription for a different cream. We will try it tonight.
After that, we headed home. Titus once again thought he should eat dried fruit while riding in the car, so I gave him a dried pear. He fell asleep before he finished it, so I stayed in the car with both sleeping boys while Linda and Mariya went to Walmart for a few items. When we got home, Titus was still asleep, so I sat in the car with him until he woke up.
This week we should get an action plan for when we go home. We will have different skin care routines depending on how Titus is doing. At a minimum, we will have an evening bath with vanicream after the bath and throughout the day. If he ever flares up, the skin care will be more intense. Dr. Dutmer told us that most of these young kids get much, much better as they grow older. Hopefully he will grow out of it completely, but he will probably still have a few issues with it and/or food allergies even when he is an adult. We pray he will grow out of it completely. Our hostess here tells Mariya that she is going to need a helper back home for baths and other work. We are so thankful for Elizabeth’s help back home before we came here, Linda’s help here, and help from other family and friends as well. Thank you all for your prayers and support.