How Is Luke Doing? - A Hard Question To Answer - Life With Luke

3년 전

Luke is our 20 year old, special needs, son. I think I've told a little bit about his story here already, but lately a lot of people are asking "How is Luke?". It's a very difficult question to answer. This post will serve to help me collect my thoughts and start a conversation with this community.

I'll give you the short version of what has happened since January of this year.

Luke got sick around the New Year. He had to be hospitalized because of double pneumonia. We spent three days taking turns hanging out with Luke while he took his treatments to get over the pneumonia. This event was very traumatic for Luke. He likes routine and familiarity. The hospital stay was very uncomfortable for him.

Prior to Luke's stay in the hospital he was making great progress with all of his therapies. We joked (and hoped) that maybe someday he might even drive a car, get a job and possibly even date some lucky young lady!

Sadly, this traumatic event in his life has set him back... way back.

In the last six weeks or so we've been traveling over to Houston (3 hour drive) to the big Texas Children's Hospital. Luke has appointments with several specialists to see if we can get some things figured out.

Here are some images of Luke getting rigged up for his EEG test. The test went well, but Luke didn't cooperate with the sleeping part. They really wanted to get some of the test done while he was sleeping, but Luke doesn't like to sleep. Especially with his head all rigged up with wired and laying in a hospital bed! The results showed some "slow brain movement". We don't know what that means yet. We have another appointment coming up soon to discuss this with the specialists.

Just in case you missed it before. This video below shows our video of Luke when we got the diagnosis of FoxG1. We were all excited because now we had an officicial diagnosis... a reason for why Luke is different. Well, since then we've been told that he isn't really FoxG1. His genetic duplication spans across many different genes to include the FoxG1, but he doesn't look or act like a typical FoxG1 kid. Luke is very unique. No doctor is really ever sure what to do with him.

So, How is Luke?

Sorry, to keep you waiting so long for that.

Luke is not doing well. He has regressed since January to the point where he won't eat, drink or sleep much at all. He needs verbal cues for everything. He has lost the desire to use his hands. He won't grip things, zip zippers, button buttons or even give a good handshake like he used too.

We spend all day long urging Luke to eat. He takes super tiny bites and takes forever to eat. Just so you can get an idea of how slowly he eats... we have watched him eat one dry cheerio in 4 bites. Excruciating!

The docs are asking for us to get more calories and more fluids in him. The GI specialist wants a minimum of 57 ounces of fluids per day consumed by Luke. That is a big big chore for us. Luke's mom has turned into a full-time care taker. The responsibility of taking care of Luke has turned into a 20 hour per day job.

I'm going to leave this here for now. We'll discuss more as I have more details, but maybe you can understand why it is very difficult to answer the question of "how is Luke?".

Thank you for being here with me.


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i wish you all the good in the world


Wow, I'm touched. Thank you :)

100% upvote and resteem <3

Big hug from me and i hope he get better.❤️

sending you three all the love. ❤️


Thank you. It's nice to have a supportive community :)

Praying things get better for him...


Thank you. Prayers are much appreciated :)


Yup they cost nothing but do so much in the ears of the master...



I wish for progress in Luke's health so he may return home where he is most comfortable. Many thoughts your way!


Thank you so much. We are hoping for Luke to return to his pre-january "normal" state.


Hugs to you and yours and keeping my fingers crossed for your boy :)

Much love to y'all.


Thank you very much.

I hope things will start to get better for Luke and for you. Don't just care for Luke, but also take care of yourself <3


We are trying. Getting time to rest is difficult, but we'd do anything for our kids :)


Yeah, I guess all good parents do. I can imagine it's hard to cope though. I hope you have enough support around you to get some rest every once in a while.

Get well soon

God bless you all! What a challenge, but you are strong. I don't know much about this condition, but will get more educated due to your post. I have a special needs brother that has been so much a part of our lives. Maybe someday I'll share his story. Take care of yourselves, and may you draw strength from those around you and those here in this community.


These special people in our lives help make us better people if we allow it. I know that Luke has helped me become a better dad, husband and man.

Really touching story. My prayers are with u all and I wish for Lukes recovery. Hope u as parents have time to rest it can take a tol on u in situations like urs. Followed upvoted and resteemed. Wish u all the best and my thoughts are with u ♡


Thank you. Pray for mama to get some rest and find a way to find joy once again :)


Ur welcome. I sure will :0) Im sure u find joy again.

I really dont know what to say...Its hard-I am full of empathy for youlr family and Luke! Just wanted you guys to know that you are in a lot of peoples prayers and thoughts including me! much love


I know there are many who care. Thank you for being one who shows your love and support.

May Luke will be healthy again as soon as it possible! The best wishes from Lithuania!

Luke and your family are in my prayers too!

Sending Prayers :) I upvoted and also RE-Steemed so others can see :))

My heart goes out to you, your wife, and your son. Prayers that things start moving in a better direction!!!


Thank you very much.

Hi daddykirbs, I've sent a donation to you for Luke as a small token of support from all Steemians via the Giving Steem initiative. I really hope for the best for you all.



I'm humbled. Thank you. I'm transferring some of that to bitcoin so I can turn it into cash to help with the gas expenses of driving Luke to Houston. Thank you thank you.


That's exactly the kind of thing it's for. Stay strong, thinking of you and Luke.

Sending good vibes to Luke and family. The video will be a great tool for awareness for others to learn. I wish you and Luke the best!!

So sorry to hear he's had such a set back. I hope he starts to improve soon perhaps riding might help he'll need the use of his hands for the rains :) thanks for sharing

Man... I can't imaging how tough this must be for Luke. A young guy that wants to do so much, but is held back by this. For you and his mother it must be very hard to see this. All the respect for you guys and how you seem to go through this terrible situation.

Wishing you all the best and hopefully a better situation for Luke very soon. Take care.

I'm sooo sorry for you! Sending a lot of love and pray for you!

I'm so sorry. I hate to hear this! I have more specificity on how to pray for Luke and you all now.

How does he react to scents like essential oils? If he doesn't have strong reactions to them, I may have a few I'd be happy to send you. Just a gift. I don't sell them or sign anyone up. I just want to help.

Again, praying!!!



I really appreciate your offer. Several friends who are in the oil business have offered (and given) oils. Mostly right now we are using them in the diffuser at night to help him sleep. We have also tried drops of lavender on a stuffed animal . I'm not sure how (or if) it's working, but we figure it can't hurt :) My prayer request right now would be for mama. She needs peace, rest and joy. Thank you!


I can do that! Will pray right now! Always happy to pray!

I am sorry to hear about your son. He seems like a very strong-willed boy. I pray for him and wish on him health and strength as well as you guys good luck God bless

@benjojo I'm humbled by your gift. Thank you.

Praying for you Luke as well as mom and dad. Get well soon. Love seeing you in the videos.


Thank you :) Mama needs extra measure of peace right now.

I would like to share, I hope it benefits Luke. I live with my own chronic illness and as the V.A. is so useless I have learned to heal myself in many as a holistic alchemist.

First off, I am sorry Luke and your family are suffering. And all I can say about that is Universe has ways of getting out attention where otherwise, had nothing happened we'd never have been listening. Sometimes we need to remember to appreciate and send love back to Universe.

Another way to put it, Universes message, is to slow down, smell the flowers and immerse yourself in gratitude.

Now Lukes problem is ( potentially ) treatable with Black Seed Oil. It's very powerful and wipes out all yeast, mold, candita, parasites & fungi in the body.

This remedy is spoken about in the Bible, Karon, and other books of higher knowledge.

It affects some parts of the body more than others, Lungs being one of them. Your Blood another.

KEY: There are two types, one week and one x4 stronger.

Luke needs the stuff from Turkey only, it's the strongest.

I'd bet my left Nut this oil will heal Luke.

I don't know if I can post any links in here but I will try to post 2 to help you get started learning:

I have ZERO affiliation with either of these sites.

Most Youtube videos say to mix it with honey & lemon,
and there is a recipe in the holy books too along this line,
but I just drink it strait out of the bottle. Tastes like pepper.

  • Don't be fooled by more volume - you want quality and strength in this oil,
  • if you have a Whole Foods or something like that where you live, they also sell it.

Best Regards & a Speedy Recovery.



Thank you so much. I will look into this.