Sunday, November 15, 2015

How to Get My Kid to Eat, AKA, When the Circus Comes to Town 5 Times A Day

Not having the desire to eat isn’t anything I have experienced (even when I have a cold and can't taste anything I keep eating just in case I may catch some flavor). I enjoy eating. I am blessed to have food to eat when I desire to eat it. Some people, many children, definitely one of mine, do not enjoy eating. It has become clear to me that my own kid's lack of desire to eat is a real challenge for him. It’s a struggle. Every pain associated with his stomach, even the pain of hunger, seems to turn him away even further from the mental desire matching up to the physical actions of chewing and swallowing anything.

Teaching my son Orson, who has a strong aversion to eating, to enjoy food and the time spent eating has been an interesting experience. Every day is different in what helps him to have eating success so we have tried a lot of silly things to get him to eat (you know things like take this bite like a doggy). Here are some things that work for us, maybe some of them will help another family.

·         We learned with our first kid from a genius nutritionist we work with at our CF clinic that we should never say “eat this food for Mama (or Dad, etc)” But instead we should focus on showing our kids that the food they eat is a choice of taking care of their body. When they are successful in eating, even a few bites, we encourage them by saying something like “Whoa buddy I bet you feel great after eating that cheese stick and taking care of your body.” “You are going to have lots of good energy now from that banana that you ate, way to take care of your body!” Of course this idea of focusing on kids making good choices for themselves and not for others even their parents is a good general life guideline, not just with eating.

·         Many days options of foods, for example when I list what I have that he could choose from and the list is longer than 3 things, he is overwhelmed and pushed father from the end goal of eating. So I stick to one or two things that he has enjoyed in the past then cheerfully convince him of how swell it sounds to eat that thing again.

·         The amount of food placed before my son can also overwhelm him. So I cut or arrange his food into a certain amount of bites and then we count down each one until they are gone. I sometimes, so he can see his progress, get a notecard and write out the numbers one through fourteen. After each bite I let him circle or cross out the number so we are breaking up the bites with an action.

·         We read a storybook while we eat. For every page, he eats one bite. This helps him have time to chew and swallow and helps me not to go crazy while I am sitting there waiting for him to do so. The goal being by the end of the book he is done eating.

·         Since he seems to be constantly wanting to walk around instead of eat we make action rewards for each bite. For example, he takes a bite and then gets up and does 5 jumping jacks, or he takes a bite and then does a crabwalk to the bookshelf across the room. This gives him the chance to wiggle, and break up the bites.

·         A new favorite of his is doing puzzles while he eats. He puts a piece in place and then eats a bite. There is an amazing puzzle app called “Jigty” that I like. This works well for him because he loves puzzles. Another child may get to paint one nail with nail polish for every bite they took, or race one car across the table for each bite they took – whatever interests the kid and is appealing enough to eat for.

I am sure that some would say what I am doing is unhealthy and I am creating an eating monster or that I should just let the kid eat and learn for himself. However, the good news for me in regards to these people is, its my kid so any mistakes I make with him are square on my shoulders. If I had a kid who wanted to eat and would actually do it when food was placed before him I wouldn’t be writing this post. Hopefully these ideas work for another family and they can come to see more days of willingness to eat and that magic connection of mental desire and physical action to chew and swallow.   

Tuesday, November 10, 2015

How the Mess Was Blessed, Again.

Watching baby Ruby with the three other kids makes it easy to see that they are not strangers meeting for the first time. Her eyes, always searching for the face of one of her siblings, and her humungous smile when she finds their eyes tells me that they are simply reacquainting here on Earth. We have been missing her, and we didn’t even know it until she got here. The blessing she has been to our hearts in giving us all more ability to love and more chances to show it cannot be expressed in a blog post, but its powerful and its very real to all of us.

So on her 4 month check up (a week after a CF clinic visit) with her pediatrician in late October concern was growing that she was getting sick. She was able to keep it together until the week after when she seemed to be slipping further and further towards another hospital stay. I, who already feel like I have been running on the lowest of household and motherly basic maintenance modes, was a wreck (sorry I forgot to sign your homework sheets so many times my bigs). All focus was on Ruby and her feeds and how to work through them and the coughing and the eventual vomiting induced by the coughing. The same pattern that landed her in the hospital in July was unfolding before my eyes and I didn’t know how to stop the train and felt helpless as I would be so so so so careful as I fed her and then again a coughing spasm would lose the work she and I had done over the past hour as she would cough, choke and vomit 6 times a day. We were a mess. I was sure we would be in the hospital again. The ironic part was that when she got sick last time she was in the hospital on the Sunday she was supposed to get her baby blessing in sacrament meeting at church, and she was getting bad again right before we were planning on blessing her again (Nov 1st).

Lots of prayers were in our hearts. I needed to know what to do and I needed to know how to help her best. A not so irrational fear I carry is not taking a sick kid to the hospital soon enough and regretting it for the rest of my life. So I was into my pediatrician often. 4 times in 7 days, it would have been more but there was a weekend in the middle. But I kept in close contact with my CF team and had a well trained and prepared pediatrician who helped us through. In this instance, we slowly and so thankfully saw Ruby improve and come out of the hospital danger zone.

What I am ecstatic to see now is the chain of learning experiences that happened during our 1st hospital stay that made it possible to avoid this one.

                First, my encounter with the large looming respiratory therapist one night in Ruby’s hospital room in July in which he told me of a fellow respiratory therapist on his team that purchased a hospital grade suction machine (on Amazon of course) when his baby got sick to clear out the snot and avoid a potential hospital stay triggered our research, attempted insurance involvement and approval, and eventual purchase of our own code cart grade portable suction machine. Or as it has lovingly been named in our home, the Snot Vacuum.

                Second, what I had learned about Ruby and how she responded with her feedings and how to hold her and burp her to maximize her ability to not cough during the feeds gave me the specified experience I needed to help my baby this time even better.

                Third, I saw that even though I full well knew I was a mess I had to control my temper, irritation, and anxiety because the second I did not the Holy Ghost (light and spirit of Christ) was not able to direct me, or more accurately I was not able to hear it and I needed to be able to hear it to know the step by step of what Ruby needed and when she needed it. Example : Suction her now, stop feeding her the bottle and take a break, use the percussor on her back now, etc, etc. The more I was able to feel calm enough to pray, silently most often, and control my emotions with my other beautiful and slightly neglected at the time but still loved (and fed and bathed I assure you) children and husband the better I was able to handle helping Ruby and allowing Heavenly Father to help me help her through it.

The point is, the mess was blessed. It is still a mess, but a continuously blessed one. As one of my favorite country songs says, a beautiful mess.

Now for some really exciting news, and a big fat ripple effect of Ruby’s hospital stay in July was that it gave the proof positive for insurance that although she is small she could benefit from a chest percussion therapy vest. So with the help of a dedicated and exceptionally awesome CF clinic team Ruby now officially has her own shaker vest. She will still start on 35% (while the other two CF vesters in the family can tolerate 80% and 100% power), but she has her own!  

These experiences show me like countless others in the past have that God blesses us amidst our trials. We walk through disappointment and trials but we do not walk alone, and we are being led to a better place.

Sunday, November 1, 2015

Dialing It Up A Notch : How We Met Billy


I decided I would hate Orson’s g-tube or his “button” the night before Orson had his surgery in April. He was taking a bath and I just kept thinking over and over, “this is the last day he will have a normal stomach.”

But his resilience with the new addition to his stomach genuinely impressed us as parents. He willingly let us help him at night and we faithfully hooked him up every night (except Sunday’s when he gets a break from doing it).

Now 6 months later he still hasn’t gained any weight. A tremendous amount of work has gone into the button for no weight gain. I knew he had been fluctuating over the past 6 months but it was only between 34 and 35 pounds. We went to the CF clinic on October 20th and his 35 pounds was confirmed on their scale. Such a bummer. Then the next day we went to the pharmacy to pick up the antibiotic Orson got prescribed from the clinic visit. It was a liquid. I was so mad at myself for not remembering to ask for a pill form. Orson hates liquid medicine and I knew it would be a monster battle everyday for him to swallow it two times a day.

As I was about to loose my mind, I remembered that one of the things we were taught in Orson’s stay in the hospital with his surgery is that any liquid medicine Orson can take through his button! It took a little convincing but he let me do it!

Then the next Sunday we were practicing for the primary program and the “Jonah” verse from “Follow the Prophet” slapped me in the face. The verse says :

                Jonah was a prophet, tried to run away.

                But he later learned to listen and obey.

                When we really try, the Lord won’t let us fail:

                That’s what Jonah learned deep down inside the

My decision to hate the button, and be resentful of it was not helping Orson. I wallowed in my hate and resentment for 6 months doing the minimal amount of work. My hatred had caused me to overlook that fact that I hadn’t really tried to make full use of the button and best utilize its potential for Orson. So now I am dialing it up a notch. Frank is very encouraging and helps all he can. We already have been blessed with ideas in regards of how to better utilize the button. Frank asked Orson if he had ever thought to name is button. Orson thought that was a great idea. Orson picked the name, Billy. So now instead of a piece of plastic we resent, we are talking to Billy all day long. Orson is totally into his button having a name and has created a personality and family for Billy Button. Currently Billy Button has one of his kids in the hospital, but don’t worry they will get out before Christmas – according to Orson of course. We go in again to clinic for an official weight check in December and we are excited and hopeful to see the fruits of our labors.