Thursday, May 19, 2016

Eating Real Food By Mouth!! - Adventures in Tube Feeding

Mr. Boy had his last day of Preschool today and this year was no less incredbily life-changing as the last school year. From the very first day in August, he has been different. He started eating food!!!

A little reminder:
When Mr Boy was 3 months old, he had severe reflux and was losing weight. The doctors gave him a feeding tube and that was that. For the first 2 years Mr Boy continued to projectile vomit his feeds an average of 10 times a day. We tried every specialty formula on the market to no avail. At age two we started a Blended diet of simply blending up real food and putting that in the tube and the vomiting immediately decreased to 5 times a day and for the next two years it decreased until last Spring (2015), when the vomiting completely ceased.

Wore this NG tube for two years
taped to his face before getting G-tube
directly in his stomach which is what
he has now.
He was hooked up 24 hours a day, so Dave made this platform so Mr Boy could drag his formula and pump around wherever he went since he was too small to carry it on his back.
Years of vomiting and not wanting to swallow food for fear of vomiting, left him a little too scared to swallow solid foods. But August of this year, Mr Boy started his second year of preschool and happened to be in the one class that eats lunch during preschool. I was a little annoyed at first, because I feed Mr Boy at home in the tube anyway and now 30 minutes of his 2 hour 45 min preschool day would be wasted on a futile activity. But I was WRONG. It only took 2 weeks of sitting and watching his peers eat lunch while he sat there, to make him motivated enough to start eating like never before! Up until that point, he could only nibble and swallow things like crackers or "meltables," but he would not swallow things like veggies, meats, or really any "real" food with nutritional value. But this year, preschool motivated him to try new things and eat real food!!!

I have to take a moment to be real honest, and I know this will sound crazy, but despite how deeply I loathe that tube, part of me began to dread the final process of getting off the tube because I knew it would mean a lot of extra work.  Even though logic tells me that once Mr Boy can chew and swallow solid foods, we could be done with the tube and let him thrive. But it's apparently not that easy. Since eating on his own, with me still giving tube feedings at night, he lost weight. He just does not have enough of an appetite to eat enough food on his own and grow, even though he can currently chew and swallow anything. So we are in a delicate dance… adding a little extra food through the tube after every meal, but not feeding him so much extra that he's too full to eat on his own. I love dancing, but this dance is tricky.

Several specialists have been working on the appetite issue this year with different drugs, routines, and ideas and Mr. Boy will be starting a Feeding group with other kids at the Children's Hospital of CO this summer.

As you can see, my neat and orderly way of feeding my child has been disrupted because this kid has the audacity to decide he's finally ready to eat. :)  With 100% tube feeds, I could control everything! I could give him the finest, most nutritious foods and know that he's probably the healthiest kid on the block. I could control calories and know he is getting enough to grow. All of the sudden I have to struggle with those "normal mom" problems like getting their kids to eat their veggies. lol. I never fought that battle because I could shove them through his tube. Easy peasy. This tube way of life, although difficult the first few years, had finally become "normal" to me and a safe routine.

Althought I never, ever thought I would feel it, I was reluctant for Mr. Boy to eat! The Me-from-2-years-ago would slap the Me-of-today for saying such a stupid thing. But I like being in total control of his food! It feels safe. Now I have to sit by and watch my medically fragile child eat things like… chicken nuggets… french fries… ok, and that's pretty much all he's eating every day right now. Haha. But that's painful… oh so painful. :) But more than that, his appetite isn't "normal" so I still must feed him in the tube and guess at his calories so he continues to grow and doesnt fall too much behind. It is tressful at times when I feel responsible for his growth. All that being said,  the immense JOY of being able to sit at a table with my son and have him eat what everyone else is eating, far outweighs my worries. AND, when I remember to lay my worries at the feet of Jesus and trust that He is watching over Mr. Boy and that He loves him even more than I do, then I can relax and know he's in the Lord's hands.

At this point I'm over my silly pity party and am thouroughly enjoying seeing Mr Boy try new things and eat "normally." Mr Boy will eventually eat all his food by mouth. And on that day, that glorious, blessed day, that the doctor decides to remove the tube and let that hole in Mr Boy's tummy close for good…  we will certainly throw a party. But in the meantime, we will rest in the peace that only comes from the Lord (you know, the kind that surpassess all understanding) :) and enjoy this season of discovering new foods!

We are so grateful for this 2015-2016 school year and Mr. Boy's incredible teachers!

Wednesday, March 30, 2016

When Your Child's Identity is Stolen

Something happened about 2 years ago now, but I'm just now getting around to talking about it. It was creepy, but I realize talking about it could help others. Also, it is the reason I have not posted much in the past 2 years. I have edited all past posts on this blog with a nickname for our son "Mr. Boy" (as my husband lovingly refers to him) and deleted some posts, as well as some information. It's easy to over-share when you're griveing and want sympathy and attention, but this is Mr. Boy's story to tell, so I'll be posting fewer details about him and more general updates. 

Here is the story: I am in a few private groups on Facebook created just for people with Mr. Boy's condition. They have been a major source of comfort, widsom and friendship throughout the years. One day I noticed one of the mothers in this group, "Shonaleah Gillen" had my own son's picture as her profile pic. It appeared she was claiming him as her child. I noticed her in another one of the groups as well when she introduced herself. She had a different fb page just for her supposed son named "Ashton," called "Buddy-Ashton My-Miracle" where all the pictures were of my son, taken from this blog.  She even has a blog where she claims to have a son "Ashton" (creepy right?) with his condition and took bits and peices of our story mixing it with fiction, with my son's pictures posted there as well. It was like reading a middle schooler's plagarized essay, knowing it was copied and the way they copied it shows they have no idea what they are talking about? Like that. It was extremely sickening and scary to see. Legally, unless she is asking people for donations in her fake son's name... there isn't much I could force her to do. 

But this is what I did do: I contacted the administrators of the Facebook groups, to have her removed. I sent her firm messages asking her to remove my son's pictures on both her fb pages and on her blog. I flagged her pages on facebook. (I couldn't take any action against her wordpress blog because there were no copyright infringments). I called our local FBI office and they actually put me through to an agent who took all the info down and sent it to their cyber crimes unit so that they can make sure she isn't scamming people with my son or anyone else's children's pictures and story. Stealing my son's story and identidy just to get sympathy is sad and sickening, but I really wanted to make sure she wasn't trying to raise donations for her fake child, scamming people online. 

Update:  The FBI looked into it, and will watch her so they can catch her if she is or ever does start scamming people. She was removed from our private FB groups, her "Buddy-Ashton My Mircale" facebook page is gone, her personal FB page is gone, but unfortunately the blog remains up, with my son's pictures. 

It was clear she is a sad woman seeking sympathy online for having a disabled child. I get it. the sympathy and attention does feel good when you're depressed and could get addicting. Please join me in prayer for this woman, as it's clear there are deeper issues at play in her life. Someone who would take another child's identity as their own and seek false sympathy, must have been something horrible to get to that place. I hold no ill-will towards her. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. -Ephesians 6:12

This is a sad reality of putting our children's stories online for the public to see. It is hard to balance privacy and being a help to others like us, but please let this be a reminder to all of us that the internet is a scary place, so think twice before you post something about your child.  They may wish you never shared some things when they are old enough to hold us accountable for the things we say about them online. Even our private groups are not immune to crazy people... let us tread lightly and write wisely about our children. I love you all, and hope this doesn't happen again to anyone else!