As you can see, all of the little boys are in love with Kalina. How sweet is that?
Yesterday Apollo had another visit to the Feeding Clinic at Seattle Children’s Hospital. It was an early release day for my younger kids and since school got out at 1pm and Apollo’s appointment wasn’t unil 2pm, I kept Hezekiah, Avi and Tucker out of school and I took them along on our little road trip. We have good friends who live just a few minutes from the feeding clinic, so after breakfast and morning chores, we headed to their house fora visit.
The results of our feeding clinic visit:
His weight remains steady (good news) he still hasn’t gained anything (not-so-good-news).
Feeding him is going better. This is GREAT news. I haven’t posted a whole lot about what we are doing in regard to feeding because what works or doesn’t work with Apollo doesn’t necessarily have any bearing on other kids….but here’s what it looks like.
The problem is Apollo doesn’t eat enough to grow. Why? We don’t know. Because he went so long when he could barely eat, due to physical issues, we feel into a pattern of feeding him whatever he could eat. That was fine for then, it kept him eating every day, even if it was only a bite or two. He retained his oral eating skills (some kids with feeding tubes will lose these). Right now, though, he can (as far as we know) eat anything. He just doesn’t. Whether it is because he is used to feeling hungry or doesn’t have a good connection of the cycle of: I feel hungry, I eat, I feel better.…we don’t really know. I should also add, the doctors had no idea removing his tonsils (which was done in 2014 due to severe sleep apnea) would improve his eating so much. So does he still have some type of physical issue preventing him from eating? We don’t really know. He has just started taking reflux medicine again, twice a day. I am really, really, hoping this helps him.
Here is the basic plan:
1.We need to stop “chasing after the perfect food”. In practice, this means I put two foods in front of Apollo and say, do you want potato chips or tortilla chips? And leave it at that. We used what Ellyn Satter calls the Division of Responsibility. We decide what, when and where Apollo eats, he decides if and how much. While that might sound ridiculously basic, nothing is easy when it comes to feeding Apollo, because he often decides to eat nothing.
2. We offer Apollo’s “preferred foods” at every meal. When the dietician drew up the list of foods Apollo eats: always, frequently and sometimes, the only food in the “always” category was water! But, we now offer his “frequently” foods at every meal. His most common breakfast is eggs with Salt and Pepper Potato Chips. This means we are often adding things like HoneyNut Cheerios or Lettuce Ends (the bottom 1/3 of romaine lettuce) as entrees at meal times.
3. We offer him a carb, protein and fruit or veggie at every meal. The dietician is really, really pushing protein and carbs at every meal and snack. This is really difficult, because there are very few proteins he eats “frequently”.
4. Meals take place 6 times a day. The dietician doesn’t want him going more than 2.5-3 hours without eating. She thinks he gets too hungry (because he eats such small amounts) and then he can’t eat anything.
5. He is now taking reflux medicine twice a day. He complains almost every day that either his stomach hurts, or it “feels funny”. We are hoping this is the issue. Apollo has a long history of reflux, so this could be one more key falling into place.
6. All of his calorie intake is to take place at mealtimes, not while he is sleeping. We have been tube feeding him at night while he sleeps since 2014. While this solves one problem (gets him calories) it also gives him enough so he doesn’t have to eat during the day. Since we are working toward tube weaning, the nighttime calories have to go.
So that is the gist of what we are doing. It looks so easy and simple when I type it out. In reality, it isn’t easy or simple. But things have gone well these past few weeks and I am (once again) hopeful.
Feel free to ask any questions, I will try to answer them in the comments!
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Tube weaning resources:
Ellyn Satter Institute: This website is dedicated to providing information about all types of feeding issues. If you struggle at all to feed your child, you will likely find some good info here.
*Child of Mine: Feeding with Love and Good Sense. This is on of Ellyn Satter’s book. We’ve had it for several years and provides a ton of great info. This book was actually recommended to me by a blog reader.
*My Plate Pocket Chart: We have been using this chart with Apollo to talk about different foods and eating. I bought this one because it came with 90 food cards. I use these as a visual reminder when he is having a hard time eating or choosing a food. We also use it for “meal planning” for Apollo.
*Amazon affiliate links
Hi Renee,
I am a mother of 8. One of my daughters was born without a sucking reflex, and has always struggled with eating and gaining weight. As she gets thinner and thinner, I have been criticized by doctors and family members alike that she is just a picky eater, so I should make her eat, even punish her for not eating. She is 7 years old and has dropped and dropped weight until now she is in the 3rd percentile for weight…which might be ok, except that she hasn’t gained weight in a year now. She will starve herself rather than eat what is offered, no matter how hungry she is, if the food offered is not on her accepted list. Over time, she has stopped eating foods that she has previously eaten, and she eats less and less. My daughter has no where near the medical problems of Apollo, but there are some slight similarities.
We are having success seeing a speech therapist who specializes in “feeding disorders.” It is a slow process, but every week, the therapist assigns a food of the week, and we practice in therapy, and at home, finding ways of incorporating new foods into my daughter’s diet. The food this week is banana. For example, my little girl, who has never eaten a bite of banana, is encouraged to cut, smash, touch, and smell a banana, then dip dried bananas chips into foods she will eat (peanut butter, nutella, pudding, etc.) to accustom her to the taste of a banana. Also, she is offered banana muffins, and banana pudding, complete with whipped cream and sprinkles, so that she will associate the taste of banana with something pleasant and fun. It is amazing! Foods that my daughter never would eat are ever so gradually inching their way into her diet, tiny bite by tiny bite–sometimes it’s only a lick. The general concept of the feeding therapy is to familiarize the child with new foods, to make eating a very positive experience, and to gradually overcome the child’s former trauma with eating. At therapy, new foods are introduced in a very exciting, positive way. A little nibble at a never-eaten-before food is encouraged and celebrated, but not forced.
Our speech therapist said that my daughter likely developed this disorder because at some point, there was an unpleasant experience with eating, which might be the case with Apollo also, with his extensive list of medical problems.
Perhaps there is a speech therapist in your area who specializes in feeding disorders. We found an excellent one by calling a local hospital’s rehab clinic and asking for names of a speech therapists who specialize in eating problems/feeding disorders. Our family has never had success with dietitians. Occupational therapists are ordinarily helpful with eating problems if the texture of the food is the issue, as they work with sensory integration, although a few also work with eating problems/feeding disorders. A speech therapist might be helpful in your situation. Just a thought.
Your family is in our prayers. Y’all have been through so many difficult situations with Apollo. You will get through this too.
–Tess
Thank you for sharing your story. Apollo spent six months doing feeding therapy with a local SLP, but it simply wasn’t a good fit for a variety of reasons. And, his tonsils were a huge part of him not eating (though we didn’t know that until they came out). In his feeding therapy group, there were several kids who were literally afraid of the food…he was the youngest in the group and watching older kids struggle so much to eat was having a negative impact on him. We did just find out he qualifies for speech therapy at school, and I am really hoping this is one of the missing elements…
Frankly it doesn’t really look easy or simple. At least not in real world terms. I think it would be a challenge just managing that with single child, let alone in the midst of caring for a number of siblings! My hat is off to you, and I pray that God pours out His strength, resilience, and patience on you.
Thank you. When I type it out, or say it, it seems simple to me. But that is because it would be simple with a typical child. Not one with the issues he has.
Hello,
Did they check if he add any allergy (especially dairy (cow’s milk protein, which is different from lactose) and gluten)? Both can be quite common in infancy, and if undiagnosed, stay for life as the baby is constantly exposed to them. (Egg, soya are also a possibility).
My 1 year old son (breast-fed) had internal reflux (= baby is screaming, in pain but nothing comes out so you don’t understand what’s going on) if I ate cow’s milk products (milk, cheese, butter…) and had a slow gained weight. Once I stopped eating them, everything was fine (reflux and gained weight).
(for my son, blood tests and skin prick tests were negative (quite common for children under 5-6), so if the tests are negative, the only abslute proof that it’s not an allergy is to remove the suspected food from his diet for 1 month, and see if there is an improvement…. (usually, things get better after several days, but sometimes it takes longer…..))
Some children are less sensitive to pain (my sister in law’s neighbor discovered recently that 4 of her children have this allergy….. the eldest is 7 or 8…. for one of the girl, the reflux (internal) was a normal feeling!!!!)
An undiagnosed allergy could explain pains when eating (so not willing to eat), and also slower gained weight (as the intestine is irritated, nutrients absorption is less efficient).
Sorry if there are some gramatical errors, I’m French….
good luck!
Yes and no…Allergies are tricky because they are hard to actually test for. He was tested for Celiac at about a year old. He was taken off milk entirely for years…and we have had no issues with reintroducing it. It is definitely something we have discussed with his doctors. Who knows, maybe that is one more pieces of the puzzle.
And your English is AMAZING!