National Jewish Health Pediatric Eczema Program, Day 7

Titus slept very well last night. He woke up a few times, but not until around 6 am, and he went right back to sleep. This is absolutely amazing compared to how he was sleeping at home. It seemed like we would be up half the night, and we were very sleep deprived. Titus has been sleeping quite well for over a week now. Praise the Lord!

2014-02-18 14.26.48To refresh your memory, last Wednesday, Titus was scheduled for a swallow test at 7 am. We made special food for the test the night before, got up at 6am, and went to the hospital. Titus couldn’t eat or drink for 4 hours beforehand. Then when we got there, they told us the machine was broken….so it was rescheduled for today. Yesterday, I asked our nurse if the test really had to be at 7 am because it is so hard to get the babies here by then, and she said yes, it has to be early. So once again, we got here at 7 am and starved Titus all morning. Then when we went to get checked in, they told us it wasn’t until 8 am. So I has to distract Titus for another hour while he really wanted to eat. We finally got the test done, and he did well. He even got a teddy bear as a prize for being good! Now we wait for results.

Once the swallow test was over, Titus was very happy to nurse for his breakfast. Then we got him into the bathtub as soon as possible. We wanted to get his wet wrap done so we could begin food challenges. Once we had him wrapped up, he slept for almost three hours. While Titus slept, I took a short nap and Mariya went to a parent meeting about “Hopes and Fears About Your Stay at NJH.”

Our nurse let us know that Dr. Dutmer was thinking of having Titus challenge kidney and white beans today. That sounded fine to us, so Linda went across the street to Sprouts to buy some canned beans. She also picked up sandwich stuff for our lunch. Mariya was excited to order her’s and Titus’ lunch with rice and rice milk. Linda also bought some brown rice and rice cakes for Titus and Mariya.

We finally started the first food challenge, kidney beans, at about 12:30 pm. I was pretty worried about this challenge as we had tried green beans twice ourselves and Titus seemed to react significantly. Titus really liked the beans though, and passed with flying colors. We waited two hours and then did white beans. We still have to wait 24 hours to be sure, but it looks like both kidney beans and white beans will be fine.

Dr. Rabinovich came in to look at Titus after the first challenge. He is very pleased with his skin and how things are going.

Titus has been doing really well with all his food challenges. He looks forward to the nurses bringing his “treat” and uses sign language to say “eat”, “more”, and “thank you.” The nurse says he is doing really well – sometimes they have to force feed older kids. We are thankful for how good-natured he has been about all of this.

Since we had to stay at the hospital for two hours after the last food challenge, we weren’t able to leave until 7 pm. It was a long day, but we are thankful for the successful food challenges. Tomorrow we will try to give Titus a bath at 6:30 am so we can get started on food challenges earlier.

Thank you for your prayers and support.

3 Responses to “National Jewish Health Pediatric Eczema Program, Day 7”

  1. Linda Richardson says:

    So excited to see Titus’s successes. God is answering prayers. So glad he is sleeping and you can get sleep. Will pray for good success for more food challenges. Thanks for updats and the pictures.

  2. V. Greene says:

    Wishing you & your family well. Titus is in my thoughts for continued success.

    – A friend of Matthew Wong who is also @ NJH

  3. Paige says:

    I’m so happy things are going well. More sleep AND more foods in your diet; what a relief that must be for all of you! Wishing you continued successes with your food challenges. I know it can be nerve-wracking, but so worthwhile.

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