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.

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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.

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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!

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Our smiley baby Charlie!

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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

 

 

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