Wednesday, February 17, 2010

Operation Michael

I really don't know how to begin this blog entry, which always leads to some awkward beginning like the one you're currently reading. Anyway, I mentioned in a recent post that I felt inspired and motivated to put a plan in action in order to deal with something that has long been an issue. And I said that details would soon be coming. Well, here it is. The issue is Michael. More specifically, Michael's eating problems. I feel like it's time to be more pro-active in resolving them.

Let me begin with some background. Michael is 4 1/2 years old, and with a few notable exceptions, he still pretty much eats only pureed foods. This in itself is a problem. But when you combine that with his sensitivity to milk, along with his stubborn refusal to try new foods, it becomes even bigger. So big, in fact, that I would say this is without a doubt the biggest trial I have ever faced.

We've certainly worked with him. He was in the Early Intervention program from 13 months old until he "graduated" out of it at 3 years. Even then, his feeding therapist continued to come for a couple months after that to see if she could help any more. We've done a swallow test under x-ray to rule out any physical abnormality. We did three rounds of feeding groups (designed to use peer pressure to get him to eat) with no real progress. It was very frustrating to see every other kid in the group start eating with only one series of group meetings, except for Michael. We did three, and nothing. More recently, we saw another occupational/feeding therapist through Primary Childrens. But she used the same program that the Early Intervention folks used, and it hadn't produced much progress when they used it, so Jeff and I decided to save our co-pays and try something else.

Michael does well with structure. Rules are very important to him, and he (fortunately for us) doesn't really question us when we say something is a "rule." So we made a rule that he had to try a "real" food every day. Eventually, this evolved into eating something that we are eating for dinner every day. And he has done remarkably well. He has progressed enough that we can go out to a restaurant without bringing food for him - as long as that restaurant serves spaghetti. We are big fans of Olive Garden, Fazolis, and Golden Corral. He no longer throws fits and argues about whatever we're eating for dinner. If he knows in advance what to expect, he does pretty well. It's when things are changed at the last minute that we have problems... but that's another aspect of this challenge.

So when Florence Bunker was teaching that lesson in Relief Society in Delta, it just hit me. I wasn't really thinking about Michael at that moment, but she shared a story of a man in the Polynesian islands somewhere who was blind. This man heard that President Monson was visiting another of the islands, and he arranged to be brought to President Monson, in order to receive a Priesthood blessing of healing. I was struck by this man's faith. I mean, I most definitely have a testimony of the power of the Priesthood. But this man had the faith to act.

As I heard the story, I was just overwhelmed by thoughts of Michael, and by a feeling that it was time. Time for me and Jeff to do whatever we needed to do for Michael. Time for a plan. Time for faith. Time for Michael to be healed.

I say healed, but I know that it will require a great deal of effort on our part. So I've been organizing a plan in my head to attack what I feel are the main issues. Some of these are things that we've already been doing. Some are things that we're inconsistent in, and others are things that we really weren't doing at all. I need to write the plan down somewhere. If you don't want to read the specifics, feel free to skip this part.

Nutritional:
Michael's diet is primarily made up of pureed fruits and squash. We supplement a lot - brown rice protein in his pureed pineapple; zinc powder in his bananas; olive oil in his squash. We need to do better at making sure he gets his multi-vitamin every day, along with his cod liver oil (SOOO good for his eczema). In addition, we need to put the zinc powder in one of his foods at EVERY meal. Zinc is a little miracle worker - great for his skin, and for the appetite. Since we've been giving him zinc, I have noticed that he tells me he is hungry. He never used to do that. Zinc is supposedly a factor in taste. People who are deficient in zinc find most foods to be bland and tasteless. So hopefully the zinc is helping him to like the flavors of the foods he eats. I mean, really, who wants to eat tasteless chunky food that makes you gag? (I think that's called TVP). If the food TASTES good, then it's easier to get past the texture. And easier to take the second bite.

Emotional:
Michael is by far the moodiest kid I know. He is either an angel or a demon. And he goes from one to the other in the blink of an eye. The best ways I have found to deal with this are to make sure he eats regularly to stabilize his blood sugar, talk with him about what will be happening, and teach him strategies to cope with his feelings. It seems that when he knows what to expect, he can deal with things positively, even when those things might not be pleasant for him. But when plans change at the last minute, he really gets upset and out of whack. I know most kids are like this to an extent, but this trait seems very pronounced in him. We've also talked with him a great deal about choice - how he can choose to be happy. We've made him accountable for his choices. And we've often let him "take a break" to calm down. These "breaks" are sort of like time outs, but they aren't punishment. It's a few minutes for him to cope with the situation before he comes back and deals with it.

Behavioral:
Besides enormous, sudden mood swings, Michael also displays extreme stubbornness. If he doesn't want to do something, there is no bribery in the world that will get him to do it. Many times I have had to force him to do something - from pick up his toys to get dressed to start eating. It's like a battle of wills. And then everyone loses. And someday, he'll be so big that I won't be capable of making him do it. I've found that "disguised bribery" is the best way to handle his stubbornness. I try to never say, "If you'll eat, we can play a game." That won't work. But, "If you eat fast enough, we might have time to play a game before you go to school" usually does help. The choice is his. It takes away his control over me (I'm not begging him to eat), but it also gives him control over the situation. It also helps to let him make choices whenever possible.

Physical:
Here's where it gets more difficult. Dealing with Michael's emotional and behavioral issues is only part. He obviously has some physical issue with eating, or he wouldn't gag. But nearly three years of feeding therapy resulted in only minimal progress. I feel strongly that we need a new approach. And I believe that the approach will come through my brother-in-law Burke. He recently graduated from chiropractic school, and has learned some great techniques to help people with all kinds of issues. (It's not all about crackin' backs, folks.) He is currently working on setting up a practice in Gunnison. I've asked him to work with Michael, and he has agreed. He has all kinds of ideas, and I'm very much looking forward to seeing what we can do.

Spiritual:
This is perhaps the most important aspect. Maybe it sounds corny, but one of the strongest impressions I had while listening to Florence's lesson was that Jeff and I need to step up. We need to do better at scripture study, prayer, temple attendance, fasting, Family Home Evening. I'm embarrassed to admit what big slackers we have been in these areas. But if we want a miracle, I strongly believe that we have to do our part. We can't very well expect God to heal Michael if we aren't willing to honor the commitments we have made.

So I asked Jodi to watch the kids while Jeff and I went to the temple. And while we were there, I told him about my experience in Delta. Since then, we have read scriptures together and prayed together every night. We've had Family Home Evening each week, and we fasted on Fast Sunday (okay, Jeff fasted - I did a "modified fast" since I'm nursing). So far so good. And Michael has made some progress. He's eaten steak, macaroni salad, green beans, pees, and some other things. Sure, all of these have been in small chunks and in small quantities. But they've been in chunks and not pureed. We've talked about practicing, and explained that he'll have to eat these foods a lot of times so they become easy for him. And he's okay with that. Just this little change in attitude is HUGE.

I know that we can overcome this challenge. I know it's time. I know Michael can be healed.

The future is as bright as your faith!

Note: I have started a separate blog to document this experience. I don't know how often I'll be updating it, but please feel free to follow our journey. The link is on the right side-bar under "my other sites."

10 comments:

Callie Hansen said...

You are truly an inspiration to me. I love you and your entire family. I believe in miracles and that our Father in Heaven can heal the faithful. Our prayers will be with Michael and You and Jeff.

aje said...

I love your plan! I hope you know that you are not in this alone. Let me know if I can help in any way (besides prayers & fasting, which will already be done for you, Jeff, and Michael) :o) Good luck!!!

Connie said...

Go forth with faith, stay in tune. You are great parents. You have done an amazing job. We are here to help with whatever we can.

Malinda said...

I love your plan. I can tell you that Ben made amazing progress with his speech when Nate and I made it a matter of fasting and prayer (combined with our other efforts). There really is something to the whole faith thing. Good luck!

Hollie said...

I've heard you speak of Michael's eating problems before, but had no idea it was to this extent. This must be so trying for your entire family.

How wonderful that your brother-in-law has some ideas in mind. I would love to know what he does and how it helps. My mind is very intrigued by that sort of stuff.

I will definitely keep you in my thoughts and prayers. You are such a wonderful example of faith.

Rachel said...

The way you describe Michael reminds me a lot of Bailey, so I can definitely relate in many ways. -I wish you great luck in your progress with Michael. I have a patient with severe oral aversion, so I understand how slow such an eating process can go. I think it is great how you decided to deal with your situation. Sometimes it requires pulling out all the spiritual options (though they seem unrelated) to find your direction. Good luck and I'll pray for you guys. I really like Michael and hope things work out for him and you guys.

Dennis and Calena said...

Oh my gosh Cami- thank goodness you found my blog so I could look at yours! It's like our boys are one in the same! I had no idea there were such people as a Feeding Therapists though. Tavin is in the Early Intervention Preschool which he just started but these other things I am going to have to check into A.S.A.P. Everyday is such a trial when even thinking about foods here, I totally understand how stressful that can be. It is so wonderful that you have posted this all on here though because I didn't know about Zinc and all of these other options, I am in shock!
You right now are a blessing to me! I hope you realize what you have just done, I feel like there is hope now because I have been so out of options. I only dream of Tavin touching meat but hearing your story I hope that we can only follow in your footsteps. Thanks again and you can guarantee I will be following the blog :-)

Cami said...

Calena - a feeding therapist is really an occupational therapist; I call them feeding therapists because that's what they worked on with Michael. Also - you might look into a speech pathologist. They are also trained to work with motor function in the mouth, and some of them work with texture aversion.

Mark and Emily said...

Cami, you are stronger than you know! As a special education teacher I have worked many, many times before with OTs and PTs ans SLPs (you are speaking my language). Rest assured these folks are highly trained..with perseverance and faith a lot can be accomplished!

Elissa said...

You guys are amazing parents. I'll pray for you that things continue to improve.