I want you to know that I love you. I love you so much.
Be rejoicing in your hope. Bear your afflictions bravely. Be persistent in prayer.
You have a kind spirit that warms people. You are a precious gift from God.
Ichthyosis is Rare.
not found in large numbers and consequently of interest or value.
unusually good or remarkable. few and far between.
like gold dust
Lincoln you are of interest and value, you are few and far between. Lincoln you are like gold dust.
I want you to know that everything will be ok.
With your hourly routine, many many doctors appointments, and fitting in.
You we will have a long road ahead. I hope the kids you grow up with will have compassion, I hope their parents have taught them right from wrong. I hope they are aware of feelings, and when they’re not I hope you have the strength to graciously walk away.
I love you and I will fight for you. I cry daily, not because I’m sad but because I love you and this is plain hard, I see everything, I do everything. I see your raw skin as I apply yet another layer of Vaseline and hope I don’t catch a scale and pull, I see your dry eyes as your try to force them shut for relief, I see the scales, all the scales. I see the layers, I see your body trying to let go of the scales just for more to awake. I see your collodion membrane still so tightly attached to your head, with every shed comes a bald spot. I hear your sweet newborn cry as you want more milk because your body is is working so hard making and shedding skin, im trying so hard to keep up with pumping and nursing because I know mammas milk is what you need but im terrified I can’t keep up.
You are surrounded by so much love, I pray that you will bottle all of that love up and save it to share with others around you.
Please don’t let Ichthyosis stop you from becoming anything you want to be. You have already shown me what it means to be courageous and wise. You have so much to offer the world, God has you here for a reason, he could have taken you from me in the womb and you would have been ichthyosis free in heaven but he allowed you to be born for a reason. There is a reason. You are who you are- you may look different but that doesn’t matter, what matters is whats in the heart, let your heart be known .
” People look at the outward appearance, but the LORD looks at the heart.” 1 Samuel 16:7
I want to prepare you for what’s ahead, I don’t want to do this to scare you but only to inform you. I want you to know you can always come to mommy and daddy. There is nothing to big nor to small to talk to us about. That’s what we are here for, that’s what God has equiped us to do.
You have scales that cover your entire body.
People will stare, people will ask questions. You don’t have to explain the way you look to everyone who asks. Just because your used to being asked doesn’t mean you have to answer. But when you do explain your condition, give it your best, bring awareness to ichthyosis.
As of right now, you still cant close your eyes all the way, sometimes when you sleep your right one shuts, and when you cry they shut- that gives me hope. The ectropion you were born with from the membrane caused your eyelids to be slightly inside out. Most people with ichthyosis cant close their eyes all the way. luckily we have eye ointment that relieves the dryness.
It may be difficult for you to hear, the scales build up in your ears.
You have dry skin, it will crack.
You have a very high metabolism since your body is always making new skin cells. Good thing we have a Costco membership 😉
Some people have emotional turmoil.
Some people have very little hair because of the scaling.
You will have a hard time sweating, the scales cover your pores.
You will have to take multiple baths daily. Right now you are bathing in pool salt.
Most importantly I want
you us to remember God doesn’t break his promises.
God has promised that all things work together for good to those who love and serve Him faithfully (Romans 8:28). It may be difficult for us to see and understand how this is accomplished at times, but God has promised it, and He will deliver
God has promised that His grace is sufficient for us.. It is through an obedient faith that we have access into the grace of God.
God loves you.
I want to thank everyone for the ways you have communicated all of your encouraging prayers and words. Even though I may not respond, please keep them coming, its what I need.
Thank you everyone for all the wonderful meals, it took a major load off of our family.
Thank you for the washer and dryer, we are able to keep up with all Lincolns vaselined clothes now!
And thank you for donating to our gofund me account. We have almost reached our Goal! http://www.gofundme.com/pyb4oo
Our family could use some prayers
Little Lincoln will be going in for biopsies on May 7th.
Prayers for Adam and I to stay strong in all this
Prayer for Adam at work, he gets up with Lincoln and does a “shift” before leaves. I pray for his strength.
Prayer for Zion and Ruthie as they have to get use to our new life. They are embracing it, they love Lincoln so much! Adam asked Zion what he thought of Lincolns skin and all he said was “its special, its special skin”
Prayers for Healing for Lincoln.
Our family is weighing the option of moving. Leaving everything we have known. A family friend said so peacefully ” Let Lincoln lead you.”
With Lincolns skin condition his skin is very very dry and he becomes uncomfortable, with much research we have found that the humidity will moisten the scaling and slow the process of the scales causing him much relief. When he was in the nicu he was in a humidity incubator and his scales never developed. As the doctors reduced the humidity the scales started to appear and since we have been home the scales have been far worse. We are considering a more humid climate, obviously Colorado is out. we have thought about Texas Florida and Hawaii, with Hawaii being the number one option because its closest to the equator and more tropical. Our prayer request is that God would clearly answer where and when we should go. We would hate to move our family all the way to Hawaii or even texas and it not work for Lincoln, that leads me to the next request- finding a way to test it out… we are praying for some financial peace to get to Hawaii to see how lincolns skin would adjust whether that is a place to stay, money to get there, this by no means would be a vacation, it would just be a trip to set in stone that its right for our family.
Our next big prayer request is what we should do with the gofund me account money. As of right now it’s sitting in a savings account for Lincoln. We are debating spending it on Medical Bills or a Micro Silk bath tub for him and saving the rest for medical needs down the road. Whats a micro silk bath tub? Caring for ichthyosis can feel like a full-time job. In just 20 minutes, MicroSilk® provides a non-invasive, natural solution for cleansing, exfoliating, moisturizing, and softening of the skin. MicroSilk® hydrotherapy oxygenates bath water up to 70% more than regular tap water with microbubbles approximately 50 microns in diameter. At such a small size, these microbubbles are able to enter the skin’s pores, removing impurities, carrying oxygen for improved metabolism, lightly caressing skin for exfoliation, and improving hydration for dry skin.
Lincoln is 7lbs now and was a month old yesterday!