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

daddykirbs (65)in #life • 7 years ago

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.