Wounded warriors

These are all the spoons we've used to get Liam to eat. Regular spoons...therapy spoons. And all of the poor things have wounds from the battle.

Caption That Photo

Sigh.

The things we do around here.

Pudgie

I've had Liam on this high calorie diet for almost 2 months now. We need him with some chub in order for them to take his adipose tissue (the chubness) and extract his own stem cells from it. They will then infuse the cells back into his body (after they clean them, activate them, and insert them into a solution) through an IV.

I started him on coconut oil in the hopes that the good, high, naturally occurring saturated fat would increase his intake enough to finally put some weight on him. I knew he was getting heavier but I needed to know what weight he was at and try to figure out where I wanted him to get to. So, I ran him in for a weight check this week.

Drumroll please......

His weight in April:  26 lbs 13 oz. 

This week:  33 lbs 4 oz.

His pediatrician couldn't believe it. Her jaw was on the floor. This boy has been meandering along on his own growth chart, barely making it on and after all this time, only two months in to using coconut oil, and he's jumped up 6 lbs!

He's moved from the 5th percentile to the 60th! 

The pudge hanging over his jeans. ; )

How skinny he was when I started. 

 

 

It's crazy! And such a blessing! God has been so good that even though he's throwing up every day, he's been able to put on the weight that we desperately need!


No more ribs sticking out.

I

SAID

RAWR!

I'm hoping for a couple more months of weight gain to make sure he's good and chubby and then my prayer is, God willing, that they will say he's fat enough for a treatment!
 

What if?

 God's gifts put man's best dreams to shame.

    Elizabeth Barrett Browning

We only remember 10% of our dreams and I think I remember even less than that. I had a dream yesterday morning that I could remember. I'm usually very pressed to remember them and typically I am able to hold on to only very small glimpses of one.  But this one was different.

We were at church with a very large assemble of people. It seemed to be mostly teenagers and women. I had been there for some time but I was in the lobby, talking and looking into the auditorium from there. Various activities had taken place on stage and a woman was up there getting everyone excited. I walked in to see what the excitement was about and to take a seat. As I was walking through the crowds the girl mentioned something about people who inspire you. I tried to get out of there but the crowd started cheering and the throngs of people pushed me toward the stage. They asked me to come up.

When I get to the front I look out and see that the room is packed. The aisles are full and the crowd is cheering...at me.

When it quiets down I start to speak. But it's supposed to be about inspiration, inspiring people, and I'm not inspiring at all. I'm just a mom. I'm nothing special, and I've never done anything special. Yet the people seem excited to talk to me.

Just then one of the girls in the audience raises her hand and yells, "How does it feel to know you are an inspiration to so many and that so many people look up to you?" I laughed loudly because I had no idea what she was talking about. But then she goes on to ask how I feel about so many people reading my blog.

I'm just stunned at that point and I tell her that I never set out to be an inspiration to anyone. I only started a blog for my own personal enjoyment. It was never meant to be read by anyone other than me. I never intended for any of  'this' to happen.

And then I woke up.

I've thought about the dream, wondering if it means anything at all. Most likely it does not. But then again, what if?

I think about Liam and how little he was when he was born, how abortions are still performed at that gestational age of 23 weeks. And I think that if anyone could change their mind about 'women's choice' because of our story then that would be inspiring.

I think about Liam's disabilities and how I never thought I could do any of this. And I hope that somehow that's inspiring.

I think about my children and how much have learned by having Liam as their brother. They have learned compassion, acceptance, empathy, mercy, and delight. If they can ever pass those on because of the experiences through which they've learned them, then somehow that is inspiring.

I hope Liam, in all of his failures and triumphs, shows that life is a blessing, a precious gift, a miracle to be cherished. And that it is inspiring.

But most of all, what if someone could see Christ in us and through us because of our experiences? Could they come to know Him better? Could they see through my darkness, my failures and see him more clearly? Because I have always felt inadequate, ill-equipped, and unworthy of the challenges put before me over these past few years. I feel like I flounder and have no idea what I am doing. And if I could inspire even one person, that if I could do this through my faith in Christ, then surely they could too, well...that would be inspiring.

Vital stim

We got some really bad advice about Liam following his g-tube placement. An OT out of Raleigh specializing in vision impaired kids told us not to feed him orally at all for at least two weeks after the surgery. Her thinking was that we would be able to then slowly reintroduce food and make it fun with the result of Liam choosing to eat because he wanted to and not because he had to.

Why was that bad advice? Because it didn't take into account Liam's oral sensitivity and poor oral motor skills. Liam isn't just vision impaired, he has cerebral palsy. So when we didn't feed him for those two weeks, when we went back to it, he didn't want to have anything to do with it.

That's also when his drooling started. Once he quit using his mouth to eat he started to drool. Eww.

It's so frustrating because he was eating ok. Not great, but ok. And he didn't drool!!

Our private OT thought Liam might benefit from trying vital stim on his face to help him get back into the swing of things again. We contacted the only one she knew of in a town 45 minutes away connected to a hospital. I'm always willing to give things a try even if it's a pain to get it done.  I had to get them some paperwork and when I called the pediatrician, they called my home health agency and they called me back wanting to know what I was needing.  When I explained it they said they had someone there who could do that. In my home. Who had experience on kids (this is a commonly used practice on adults who have been brain injured).

I do love it when things work out so well. Because that is not the norm around here.

We had our first appointment this week. Can I just say first that Liam loves attention? Loves it. He was so excited to have someone new in the house just to see him. It cracks me up how excited he gets.

We didn't do the stimulation at this visit. It was a meet and greet kinda thing with emphasis being placed on me doing a lot more orally desensitizing through the day than what I currently do. The reason I don't do more is because I am afraid he'll throw up and I need all those calories in him right now.  Seriously, this kid can throw up just by having a toothbrush touch his top lip. Not even in the mouth or brushing, just the touch. Ugh, but I guess I have to start somewhere. So I'm going to pencil oral activity into the schedule and hope we can get him on the right track.

He did have a show off time of it yesterday. She asked me how he would do with peanut butter and I figured it would be a vomit inducing food for sure. I gave him some peanut butter mixed with dark chocolate and he 'seemed' to enjoy it.  I;m hoping it was the chocolate part. Cuz I'd be willing to share my stash with him if it is.