Feeds:
Posts
Comments

Archive for the ‘Prayer Requests’ Category

Guinevere 1

In June of 2011 we began praying for our friends, Jared and Jen King, whose daughter Guinevere was born at 27 weeks gestation. They spent months in the hospital, and we kept everyone updated on their Caring Bridge website. She was able to go home ahead of schedule and their life has been a wild ride since then. Every milestone has been celebrated, and she’s quite the little cutie. Jared and Jen are fabulous parents and continue to fight for Guinevere and the challenges she faces, which brings us to this post.

Guinevere

Jared called me a few days ago to tell me that Guinevere needed to be hospitalized again. I’ll let his update speak for itself, but I want to ask you to join me in prayers for healing, answers, rest, and provision for my friends and their beautiful little girl. Thank you!

IMG644

Sorry for the long silence, but, up until today, there hasn’t been much to update.

Guinevere is in the hospital because she has long had issues surrounding eating and feeding. They are, indeed, medical, not behavioral, issues. I haven’t mentioned this much to many because I get sick of explaining it long form and half the time still have people confusing it for her just being a picky eater or obstinate, and the other half still barely gripping the concept but getting that there’s “something” going on.

The bottom line has been: she hasn’t been eating well. We’ve structured our entire lives around getting her to eat. It was consuming the vast majority of our days. There were no “days off” from dealing with this. Occasionally, she’d have a good day, but she would only be able to consume about half of the calories she needed to survive on her best days. And those were about 1 in every 10. We had been jumping up and down, screaming for help for her since July of last year with little success. Her care team, including numerous specialists, could all see that there was something going on, but it was nearly impossible to get an appointment with the therapists and specialists that she needed to see because they were under such high demand.

So, last Thursday, Jen took Guinevere in to see her pediatrician. She explained everything, again, and in more detail, about all we were doing to feed her with such little success. Guinevere had actually lost weight since her last visit, and hadn’t gained any, overall, since November. She was only up 2 lbs since her birthday. The pediatrician could see that there was no other way to get the assistance we needed, so she ordered Guinevere hospitalized under the diagnosis “failure to thrive.” In the hospital, there is access to all of the specialists we need.

So, for the first 48 hours, we were visited and observed and recorded, etc. They were measuring her caloric intake, as well as everything that “went out.” That has continued.

Yesterday, they decided that they were going to place a nasal gastric/NG tube (a tube that goes down her throat into her stomach through her nose, and has a snap enclosure that hangs down at the end of excess tube that hangs over her ear and down her back) and give her 400 calories of liquid nutrition over 10 hours as she slept. By their count, she’s taking about that much in orally during the day, and she needs 800 calories a day to be healthy and grow.

The placement of the NG tube was a difficult experience, but she has shown no proclivity to yank it out, which is pretty amazing. She’s such a trooper in that.

Last night, they gave her the first supplemental feeding. Today, she was a completely different person.

I had the best day of my life today. I’m not using excessive hyperbole. It was. It beats the day I got married. It beats the day that we found out she was coming. It beats the day that we brought her home from the NICU in August of 2011. Today, for the very first time, I saw my girl chew food. She has never chewed before. Ever. This morning, we were giving her little bites of blueberry muffin, which she would generally just mash around her mouth with her tongue before swallowing. I couldn’t believe what I was seeing. I saw her jaw moving up and down. For the first time. Ever. With food. In her mouth. She ate about the same as one of her best days without the tube assistance, but feedings were much faster, and she was more participatory.

She held her soy milk container herself. Before today, we wouldn’t have let her hold it for fear she would drop it. She would not have had the strength or coordination/fine motor skills.

She climbed up on an ottoman and onto the couch in her hospital room. She never would have had the strength to do that before. It blew me away. At home, we always had to help her onto the couch or chair she wanted into.

She went over to another little girl, a good 25 feet from us, and she engaged her to play with the same thing. She would have never gotten 5 feet from Jen or dared engage another child socially without our provocation. A week ago, I would’ve told you that you were stupid and didn’t know my daughter if you tried to convince me I would witness that today.

There are other things, and I could go on and on. But, we had a really good day today. We have a long way to go. Do not get me wrong. We are no where near the finish line and my tough little person has so much work to do. But, today, instead of acting like a cautious 9 month old, my daughter acted like a confident 21 month old. And she chewed her food. It was the best day of my life, thus far.

 

 

Read Full Post »

Update on Eddie

Sorry for the delay in an update, but I wanted to actually have new info. for you.

Benny has been to see Eddie twice, and he is SO discouraged and worried about his future. He is in Boulder County Jail and being held without bond due to the serious nature of the charges. Everything was confiscated as evidence, so we took him some reading glasses today. We’re having a Bible shipped to him tomorrow as it has to come directly from a bookseller. I’m learning all of the restrictions, and they are many. Benny is the only person that has been to see Eddie since his arrest, which is depressing. The good news is that he can receive mail. He needs all the love and encouragement he can get, so if you’re interested in sending him a card or note, please email me (nikinowell at gmail dot com) and I’ll give you the address. We’ve promised him we won’t forget about him, so we’d love some help keeping his spirits up.

The Daily Camera (the Boulder paper I don’t like) posted a new article today about him. You can read it here:

http://www.dailycamera.com/boulder-county-news/ci_19247680?source=most_viewed

Everyone who knows Eddie is giving the same story: he’s a decent guy, non-violent, and pretty trustworthy. But, the road ahead is a long one. And though our judicial system is supposed to be “innocent until proven guilty”, it appears to be just the opposite. Eddie is going to have to prove self-defense. Please pray for him and his family.

Read Full Post »

Yesterday I got a text from a friend who had heard about a stabbing in Boulder involving 3 homeless men. She wanted to know if we knew them. I read the article and looked at the thumbnail picture of the suspect and was thankful that no, I didn’t recognize the face or the name. But one of our other street friends posted something on Facebook today that made us investigate further and we were shocked to find out that the suspect was in fact our friend Eddie. I hadn’t recognized him because he wears his hair differently than the picture and because you couldn’t enlarge it to see it better.

Eddie, who plays the guitar left-handed on the mall. Eddie, who has 2 sweet little girls that live with their mom. Eddie, who Tanner met when he was here for Spring Break and reconnected with this summer while he was here interning with us. Eddie, who visited church with us and wept through the service. Eddie, who is grateful for everything he has. Eddie, who I happily introduced my parents to last Sunday. Eddie, my friend.

Benny is doing his best to get in to see Eddie, but we have heard, and the newspaper has now run this as well, that he claims it was self-defense. He is not a violent guy and the other street people know this too. Many have given that statement to the police. It is still under investigation, and I would appreciate it if you’d pray for my friend. Even if it wasn’t self-defense – and I believe in my gut that it was – I would stand by Eddie through this process.

Being homeless isn’t easy, and it’s not a choice for everyone. I’ll end this now before getting on that particular soapbox. I’ll update this when I know more. Thanks for praying.

Read Full Post »

Older Posts »

%d bloggers like this: