Life after NJH

We want to thank you all for praying for us and supporting us. You have helped us get through our toughest times!

08-DSC_0969 Titus playing in the fort mommy made.

Our lives have changed so much since Denver. Titus’ life has changed in so many ways!! As I’m (Mariya) writing this, Titus is on the floor playing with toys – all by himself with no one by his side ready to grab his arms if he starts to scratch, Charlie is napping on the couch, Faith is napping in her room, Matthew is outside getting our yard into ship-shape (it really needs some tlc), and I’m sitting in our cozy rocking chair just enjoying it all. Four weeks ago our lives looked very different and we were on the verge of losing all hope. You can read about our time at National Jewish Health (NJH) in our previous blog posts.

02-DSC_0019-001 Titus in his morning wet wraps.

Now, to get back to how Titus is doing today. He is ITCH-FREE!!! He sleeps well in his own bed, he eats all by himself, he can play all by himself and of course enjoys the company of his big sister, Faith. He can ride in his carseat without mom or dad riding right next to him. His skin is baby soft, smooth, and only has a few spots that are pink.


Our lives have changed, too. We can sleep at night!!!! We don’t have to bounce an itchy, raw, blood covered baby all night long. We are able to cook, clean, do laundry, give baths, go to church, visit family and go grocery shopping with all three kiddos. We don’t need someone living with us (we are very thankful for Elizabeth and the rest of our family and friends who helped us in our time of need). Yeah, it’s still a challenge to get everything done and be on top of it all with three little kids, but life is good and finally feels manageable! And we are so very grateful.



Having fun with Daddy.

Now, this doesn’t mean all is easy as pie. We follow a strict skin care regimen for Titus with multiple baths and creams everyday and we have to have an epipen and benadryl on hand with Titus at all times in case of severe reaction/anaphylaxis. We also are praying that Titus doesn’t need to be on the steroid creams very much longer. The doctors want us to gradually step down the dosage, as tolerated. As with anything, there are pros and cons to these steroid creams. They thin the skin, the body can become addicted to them and some people have experienced steroidal withdrawal. We don’t know what will happen if we stop the creams, and that is very, very scary to think about. We also don’t know what would happen if we used the creams indefinitely. Neither one would be a good solution, so please pray Titus tolerates stepping down and completely eliminating them in a timely manner. If you are interested in reading about topical steroidal withdrawal you can find info on the internet.

We still haven’t received the final bill from NJH.

Please pray:
– That Titus is completely healed and no longer needs the steroidal creams.
– That Charlie and Faith don’t develop any of the issues Titus has had to live with.
– We are planning on switching out some of our carpet for hardwood/laminate as that can help with Titus’ allergies. Pray for finances and wisdom, it would be nice to get this project going asap.
– Wisdom for taking care of a child with a chronic illness.
– Patience and grace in raising all three of our children.

Thank you again for praying for us! We REALLY appreciate it!



Our smiley baby Charlie!



Faith recently learned how to ride a bike. She’s really good at it, too!

Daddy getting ready to give Titus is evening bath.

Daddy getting ready to give Titus is evening bath



Read Users' Comments (0)

3-2014-02-011-Titus Day by Day1-001Last night Titus slept well again. He woke up once, but fell back asleep on his own. I woke him up at 6:45 to start our morning routine. His skin looked good this morning, and even his face was better. Last night we had tried no head wrap, and that seemed to work well. We made it to the hospital by 8:45, after his bath and creams.

Today we had nurse Anna. First thing was to get all his vitals and weight. He even stood on a big boy scale for us. We fed him some breakfast, and Anna got us started on the first food challenge of broccoli right away. He didn’t like the broccoli too well, but he passed it just fine.

Dr. Dutmer came in and gave us our Home Management Plan so we could read over it before our discharge meeting this afternoon. This plan goes over all of Titus diagnoses and allergies and describes the home care they recommend in detail. There are about four different plans for skin care, depending on how flared the eczema is. There are also recommendations for supplements, follow up tests, etc. This packet also includes all the details of Titus’ allergy testing and food challenges. The foods are broken down into foods that he is eating, foods that he successfully challenged, foods that are likely ok (we can try at home), foods that could be challenged in the future, and foods that should be avoided.

After the broccoli food challenge it was lunch time, and Titus was hungry! He was also tired, and fell asleep right away after lunch.

At about 1:30 Dr. Dutmer and Dr. Rabinovitch came in to have our discharge meeting. We talked for about 40 minutes. They answered all of our questions and assured us that we should call any time if we have more questions when we get home. We thanked them a lot and gave them a thank you card for all of the staff. Titus also thanked them over and over with his baby sign language. They also thanked us for being so involved with the whole process. They told Titus they were going to miss his smile. 🙂

Next we had the beef challenge. Titus had been eating beef all along before we came here, but some of the allergy testing showed a possible reaction. He passed this challenge just fine, and actually enjoyed eating the beef. This challenge was actually a little shorter since they weren’t anticipating a reaction. We were done with the entire challenge by 5:15.

Throughout the day, different staff members came in to say goodbye. Sometimes it was hard to hold back tears. These people have helped Titus come a long way from when we first got here. I think Titus’ good natured attitude, smile, and baby sign language really left an impression on them. We are thankful to have such a happy boy, even through the tough times.

We are also so thankful for the opportunity we have had to come here. It has been very nice to work with doctors and nurses who understand this condition as well as what we have all been going through. It has been wonderful to see the way God has worked everything out.

We give God thanks for all he has done and is doing to help Titus. Special thanks to everyone who gave financially to help us get here. Also thanks to the family of Vitaly and Lena Voyevoda for their hospitality and care. And last but not least, thank you to all of the staff at National Jewish for their kind care, for answering all of our questions, and for teaching/showing us how to help Titus feel better. Thank you all!

We don’t know how much the final hospital bill will be, but we trust God will take care of it. We definitely have a good start on it (if not have it paid in full) through Titus’ fundraiser. We will update when we find out exactly how much it will be.

Titus is so, so much better than when we came here. He can now play by himself and feed himself without us constantly having to watch him and stop him from scratching. He can basically sleep through the night (praise the Lord!), and his skin is looking much, much better. He is also very happy and full of energy. And now he and Mariya can eat about 23 foods instead of just 14, and there are other foods that are most likely ok.

We still do have struggles we will have to work through. There is really no cure for eczema (at least in conventional doctors’ opinion) and we are just managing the condition at this point. Please pray for complete healing. Often these kids will get better as they grow, or even grow out of it completely. We will be working on weaning him of the medications, as directed by the doctors. Hopefully the baths and lotions will be enough to keep him hydrated and the skin healthy, but we now know what to do if he flares. The most important thing is to stay on top of it. Usually foods are tolerated better if the skin is in good condition. Also, we need to avoid infection.

That said, we will obviously need to keep doing 20 min baths and wet wraps. We are down to two baths and one wet wrap (only on arms and legs) each day. Eventually we should be able to get down to one bath a day, with no wraps.

We are still swaddling Titus at night a bit, as he is still sometimes a bit itchy when he is tired or upset. We also still keep a watchful eye on him while he plays, for the same reason, and usually have two of us to change his diaper. Overall though, the itching is 99% better. Itching does make the condition worse, so we have to minimize it as much as possible. Otherwise it’s a viscous cycle.

We were hopeful that he would be able to eat even more foods after this program, but we are very thankful for the foods we did gain. Here is an updated list of the foods Titus (and Mariya since he is nursing) can eat:

  • Apple
  • Pear
  • Banana
  • Grape
  • Summer squash
  • Carrots
  • Sweet potato
  • White potato (new)
  • Tomato (new)
  • Kidney and Great Northern Beans (new)
  • Corn (new, but we’re a little nervous about it)
  • Broccoli (new)
  • Beef
  • Pork
  • Chicken
  • Salmon (and likely any seafood)
  • Rice (new)
  • Butternut squash (new)

We will also have to be cautious of environmental allergens. Often kids outgrow the food allergies and grow into the environmental allergies. Right now he only shows slight allergies to Oregon Ash trees and to chicken feathers. We will be doing nasal washes to help with this as well.

The doctors would like us to find an allergist who will do food challenges and work with us and Titus. Please pray we find the right one. Also pray for wisdom as to which doctors we should work with in our area back home.

Please pray for traveling mercies as we fly back home tomorrow.

Thank you all for your prayers and support.

Read Users' Comments (1)

It’s hard to believe tomorrow is our last day here. It has been so nice working with many doctors and nurses who understand Titus’ condition and have so much experience with it. Today we said goodbye to Titus’ nurse Emily. She was his nurse everyday except one, and tomorrow is her day off. There is a certain amount of anxiousness as we prepare to leave the hospital. Worries that he might go back to being bad when we get home, worries that he might start reacting to the foods that have been challenged, worries that he might not do well as he weans off some of the medications, etc. Please pray that everything will go well, and that we will ask all the needed questions at our discharge meeting tomorrow.

Silly boy

Silly boy

Today we got Titus up at 6:45 am and did his normal bath at home, but with no wet wrap. We arrived at the hospital by 8:45 am. After Lauren took his vitals, we talked with Dr. Dutmer about the night. Last night was a bit harder for Titus, which is another mystery. It took him longer to fall asleep initially and then he woke up a few times during the night. The slight rash on his back was also still there this morning, so it makes us wonder if it could be a slight corn allergy. Dr. Dutmer suggested we continue with the food challenges and see if any of the others produce similar symptoms. It could just be a sensitivity to something else, or maybe just the fact that his schedule was all messed up yesterday without his normal naps.

The first food challenge today was butternut squash. At first we almost had to force it into his mouth, but then he started to like it. This seems to be a pattern for him. He passed this challenge with no problems.

Waiting for two hours after the final challenge

Waiting for two hours after the final challenge

After this, we ate lunch, lotioned Titus up, and dry wrapped him. This was an experiment to see if he would go to sleep better for his nap with a dry wrap. It worked! He was almost asleep by the time we got him wrapped. I guess he just likes his routines. We actually all took naps during this time. Too many long days!

Lauren woke us up saying Emily said we needed to get going on his second food challenge. 🙂 Titus got about one hour of sleep, so that was good.

The second food challenge today was tomato. He loved eating the pureed fresh tomatoes. After about the third serving, we saw some slight redness on his belly, but again, not enough to say it was a reaction. The fourth and fifth servings didn’t cause any more redness. So it appears he passed tomatoes, too!

By now it was 4:45 pm, so we had to sit and wait until 6:45 before leaving the hospital, just in case there was a delayed reaction. Everything went fine. We stopped by Walmart on the way home to pick up some gifts for our hostess and her family. They have been a true blessing to us.

One more day! Titus is going to miss all his new friends.

Thank you for your prayers and support.

Read Users' Comments (0)

National Jewish Health Pediatric Eczema Program, Day 8

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.

Can I get my clothes back??

Can I get my clothes back??

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.

Read Users' Comments (0)

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.

Read Users' Comments (3)

National Jewish Health Atopic Dermatitis Program, Day 6

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.

Read Users' Comments (1)

National Jewish Health Eczema Program, Sunday

Last night went pretty well for Titus and I – he woke up about 3 times but went back to sleep pretty nicely. However, Charlie was tossing and turning and keeping Mariya up most of the night.

Mariya got up to get Titus’ morning bath started about 7:30 so we could go to church, but his skin was flared up quite a bit more than yesterday. Mariya called the hospital and talked to one of the nurses, and she suggested we bring him in so they could look at him. We took her advice, and went to the hospital. The doctor who was there took a look at him, and suggested we go back to giving him three baths and three wraps everyday, at least until tomorrow when our regular doctor could look at him again. She thinks we may have backed off on the baths a little too quickly. Also, the nurse assured us that small flares like this are not uncommon.

Please pray that he clears up nicely so we can start food challenges tomorrow. Mariya would really like to eat a few more foods, and I’m sure Titus would, too!

After the hospital, we went to Costco to get some more food. Linda even found some apple chips that Mariya and Titus could eat! When we got home, we ate some lunch, did Titus mid-day bath, lotioned him up, wrapped him, and put him down for a nap. He was really tired and slept for two hours. It was really nice outside, so Mariya and I went on a short walk in the sunshine.

Titus can walk really well now, and he has been talking more and more since we’ve been here. He has his own version of the word “banana” and he calls apples “balls.” It’s pretty cute.

This evening we had fun playing around with Google Hangouts and talking with mom and dad in Washington. Later on we had a nice dinner of Russian food. Titus final bath, wraps, and bedtime followed. Now it is quiet as most people are in bed as I write this.

We have to get up early to do Titus’ bath before we leave in the morning. We’re really hoping to start food challenges early tomorrow.

Thank you for your prayers and support.

Read Users' Comments (0)

National Jewish Health, Saturday

We get the weekend off from the hospital. It is nice to have a little break, but we are excited to start food challenges Monday.

Last night went pretty well, although we did forget to get head wrap supplies from the hospital. Luckily we had one wrap from home, plus a ski cap we could use to hold it on his head, so it worked out. He woke up once at midnight, and once a little later, but went back to sleep nicely both times. This morning Titus had some red blotches on his cheek and arms, so we were a little concerned. They seemed to fade a bit as the day went on. We are just paranoid he might go back to how he was. 🙁

Since Mariya can no longer eat beef, she has been eating lots of salmon and chicken as her main dishes. She’s really tired of salmon, and chicken gets old after having it three times a day as well. Because of that, I’ve been looking for a good source of pastured pork, which they can have. We also really needed some lard to cook with.

I spent maybe an hour or more last night and this morning scouring the internet for leads on pastured pork in this area. I finally found a local Westin A. Price foundation chapter and joined their email group. I sent an e-mail last night, and by today I had a few suggestions. One lady offered to give us some of her lard and we found an organic farm that would be in town for deliveries this afternoon. Perfect!

We did Titus bath first thing in the morning with no wet wraps. Then we had breakfast and played for a while. Then we all took a nap. After naps, we had a quick lunch and headed for the zoo. They let us in free when I told them Titus was a patient at National Jewish. The zoo was fun for all of us, and the weather was great.

I left everyone at the zoo for about an hour while I went and picked up the meat and lard. I also got myself a milkshake at Little Man Ice Cream since I was right there. 🙂 I was relying on my phone’s GPS for directions, and the battery almost died before I got back to the zoo. That was making me a little nervous, but I did make it.

After looking at more of the zoo, we headed home. Titus seems to think I should feed him fruit leather the whole time we are in the car…or at least until he falls asleep. This time he did fall asleep, and I sat in the car with him another 30 minutes when we got home so that he could finish his nap.

While we were at the zoo, our hosts cooked up a bunch more amazing Russian food. I warmed up some chicken, wild rice, and sweet potato with lard for Mariya and Titus.

Tomorrow we are planning to go to the Russian church. There is a translator so we will know what is happening. Thank you for your prayers and support.

Read Users' Comments (0)

National Jewish Heath – Day 5

Happy Valentine’s Day!

Today I (Matthew) got up at 6:30 and snuck out of the room where I had been sleeping with Titus. Hoping he would not wake up, I headed for the store to pick up Valentine’s Day flowers and grape juice for Mariya. The flowers here have outrageous prices.

We didn’t have to be to the hospital until 8:30-9:00, so our morning was a little more relaxed. We were able to eat breakfast before we left.

After his first bath and wrap, Titus took a nap and then we did his final skin prick test. This one was for environmentals, and he only showed up allergic to Oregon ash tree, and a little bit to chicken feather and oatmeal (re-done from one of the food days).

Dr. Dutmer came in and talked with us more. He is very pleased with how Titus is doing, and is planning to start some food challenges on Monday to get more foods into Titus’ diet. He is having us step down on the wet wraps and baths this weekend, to see how Titus does. We’re only going to do morning and evening baths, and only wet wraps overnight. He says the goal is to get it down to one bath by the time we leave.

After that, we did Titus second bath and lotioned him up. No wet wrap until tonight. We left the hospital around 5:00 pm. Tomorrow we’re planning to go to the zoo, since it is free for hospital patients and their families.

Please praise God with us for how well things have gone so far. We are very thankful. Also please pray that the food challenges go well next week, and that Titus won’t react to any of the foods we try. Please also pray for our three-year-old Faith, who is missing us back home.

Thank you for your prayers and support.

Read Users' Comments (0)

Last night was a good night! Titus only woke up one time, and I was able to get him back to sleep quickly without getting Mariya to nurse him. We’re hoping he sleeps all night tonight.

Today was an easier day. We were planning to be at the hospital by 8:30 am, which would mean we would have to leave the house at 8. We got up at 7, got ready, and about 7:50 our hostess asked me if we would eat breakfast. I told her we had to leave at 8, and she was like, “ok”. I thought that meant she realized we didn’t have time, but it actually meant that she started cooking eggs, bacon, and tomato for us. Needless to say, we were very late getting out of the house. 🙂

It was a beautiful morning with lots of sunshine. We arrived at the hospital, and the nurse assured us we weren’t late. I guess they are laid back about when you get there, as long as you don’t have any appointments or tests scheduled right away. We ate breakfast and got Titus started on his first bath. Basically, I sit on the side of a bath tub and pour water over Titus for at least 60 minutes every day. 🙂 It is definitely worth it.

Titus was looking really good this morning, but his cheeks were quite pink. Not sure why, although he is teething a lot and getting several molars. Dr. Rabinovich came in while he was taking his bath and looked at him. He is still happy with the progress. He said we should wait and see how the cheeks are this afternoon. He also said we might start some nasal washes, as sometimes these small kids will rub their face and get bacteria from their nose onto their cheeks, which causes irritation.

Titus took a two hour nap in his wraps after his bath, and Mariya and I were able to get short naps as well. In fact, all four of us were sleeping at one time and Linda got a picture of it for proof. Doesn’t happen that often! Not too long after we had fallen asleep, Dr. Dutmer and Dr. Rabinovich came in to discuss some of the preliminary allergy test results. We really can’t tell too much yet, as they like to compare skin prick tests, blood tests, and food challenges. However, we were a little surprised to see beef showing up as an allergy. We still don’t know for sure, because sometimes this is due to the similarity between beef proteins and milk proteins. He might just be allergic to milk and it is showing up for the beef as well. The doctors would like us to avoid beef for a little bit, just to be safe. So sad, we are losing foods rather than gaining! But hopefully we will gain a lot more next week.

I also asked the doctor if we needed to worry about anaphylactic shock or if we might need to have epi pens. He was actually surprised we didn’t already have one – he had assumed one of our other doctors had already prescribed one. He said we would get one right away and the nurse would teach us how to use it. The nurse was also shocked we didn’t have one – she was like, “that’s scary!” These epi-pens are $300-$400, but our nurse found some that had close expiration dates so the pharmacy gave them to us. Back home our insurance should cover them.

We got Titus unwrapped and lotioned, and then ate lunch. Next was another skin prick test for more foods. This one showed lots of big allergies for peas, peanuts, etc. The doctor hasn’t given us the results, and I forgot a lot of them. I know it also said apples and pears were ok. White potato had a small reaction.

After the skin prick test, we had an appointment with a nutritionist. She also had a student with her observing. Is this week a special week for observation or something? Yesterday someone observed our skin prick test, and the day before that someone observed us doing the wet wraps.

The nutritionist wasn’t too concerned with Titus’ diet, although she did say we should continue vitamin d supplements and also add some iron for a short time. Calcium is another she suggested we try to get more of into his diet. She will talk to the doctors and see if we can maybe try to get rice milk, coconut milk, or some dark greens into the diet for calcium. She said Titus’ height to weight ratio was about average, so she wasn’t worried about his weight. He is just a short guy. 🙂 She also talked about giving Titus exposure to a variety of food textures, letting him feed himself, breast feeding and more. It was helpful. It almost seemed like she thought we would be against adding some things to the diet, but we assured her we would be happy to add almost anything to the 14 foods they are able to eat now. 🙂

After our appointment, Dr. Rabinovich looked at Titus again. Sure enough, his cheeks had cleared up nicely. The nurse asked him if we would still do the entire body wet wrap, and he said yes, let’s do it for at least another day. Sounds like we might be able to back off some of the baths and/or wraps soon, though.

We did Titus second bath for the day, wrapped him up, packed our stuff, and left the hospital around 3:30. It was a good day, and we are thankful for more progress.

Thank you for your prayers.

Read Users' Comments (2)