Ian had a week of trying new foods. He was able to try bananas, pancakes, french toast, turkey entrees, and spaghetti. He also worked with some new table foods. Special K bars and NutraGrain bars are the newbies. Ian has been working his way up to level three table foods. Right now, he is eating mostly level one and two table foods. These are foods with little resistance and are easily-moderately dissolvable carbohydrates.
|Not wild about pancakes|
|Special K bar|
|Testing out the Special K bar|
We were a little nervous about the bananas since they were never a favorite of Ian’s back when he was eating baby food at nine months old. Whether store bought or homemade, bananas were never a hit. Thankfully, they went pretty smoothly this time around. The same could not be said about the breakfast foods and spaghetti/lasagna dishes. Ian seems to have a real hard time with the starchy-thicker-pasty type foods like pancakes and pasta. Thankfully, he did a little better on the turkey entree. It was a SmartOnes entree with mashed potatoes and warm apples dessert. The clinic blends it all up into one puree. Ian does the best on fruits and veggies. He seems to like pears, peaches, applesauce, sweet potatoes, and green beans the best. He also really enjoys yogurt. this really isn’t a surprise since he used to like to have spoons of yogurt a while back.
Overall, Ian seems to be 50/50 on working with new foods. It isn’t going exceptionally well now that he is trying newer, more challenging foods, but it is inching slowly. If the time comes when he needs extra therapy for textures, we can receive outpatient therapy at the clinic after discharge. He is doing well with the new table foods. His chewing is maturing and he even picks up a few pieces on his own. He does have a hard time chewing strong enough and slow enough to make full contact with his top and bottom teeth long enough for mastication. He practices “crunchies” before every meal for about 5-10 minutes.
I have been able to feed Ian more often and was told I have mastered the protocol. Problem is, I can be a bit of a speed demon! It’s hard not to get carried away once your child begins eating. I want to stuff him like a Butterball turkey!! It helps to have so many different team members looking at it from different viewpoints. It is a hard balance between pacing yourself and making sure he gets enough volume. One compromise was that we would lengthen the meal time. Ian was eating 15 minute meals, but now is able to do 17-18 minute meals. This allows more room for pace and volume to equalize.
Nanny also had a chance to feed Ian this week. She has had an opportunity to watch the instructors and myself a good handful of times. She did a really great job feeding him. Ian did manage to pull out a few tricks for Nanny. Tom’s dad will be joining me at clinic this week. By the end of the week, he will be able to practice his feeding skills. Tom has been watching the instructors and myself quite a bit, but has not had time to feed Ian for the instructors yet.
|Lunch with Nanny|
At home, I have been busy feeding Ian every evening. I am also able to feed him his our daily meals over the weekend. Ian has four meals to help with volume. This way, he can take enough volume, spread out over more meals. He has not had a daytime G-tube bolus in about two weeks. He still receives his continuous meal, but has been able to cut back to 400mLs overnight from 600mLs. This cut his time from eight hours to six and a half.
ARRANGING FOOD AND MEDS
Making Ian’s food has been quite the learning experience. I was quickly sent back to my days of homemade blending. It is a pretty warm feeling to know that your child is eating *real* food you mashed up, as opposed to something out of a plastic baby food bowl..... although that certainly has it’s time and place.
It also feels good to use our Vitamix blender again. We previously made a G-tube blenderized diet for Ian. When the troubles with retching, osmolarity, and hypoglycemia became more of an issue, we put the Vitamix on the shelf. Since then, we have used it mostly for $_00 snow cones and alcoholic beverages. I’ll refrain from leaving out the hundreds-place and leave that to your imagination.....Vitamix blenders are expensive! They have an incredible and almost unmatchable blending ability. The Vitamix breaks down the cell walls, increasing the availability of nutrients. Also, I’m pretty sure it would grind up my iPhone if I threw it in there!
|Our saving grace|
Another neat and helpful trick has been mason jars. Oster and Hamilton Beach blenders have a detachable plastic base. If you remove it from the blending pitcher, it can then be screwed onto standard size mason jars. Mason jars are smaller and are able to more efficiency blend smaller quantities of food without it f-l-y-i-n-g all over the inside of the pitcher. I did find that this gets a little tricky. Because the detachable plastic ring, blades and rubber O-ring are now at the top of the “pitcher/jar” instead of the bottom, they don’t always line of right and are easily moved around, causing jamming of the blades. Overall, it is a great on-the-go option.
|removable Oster blender parts to screw onto standard size mason jars (minus the lid)|
|standard size mason jar for blending|
Almost everything needs pureeing. Even applesauce at this point, needs to go through the blender. If you taste applesauce, it *does* have a texture to it. Putting everything through the blender at this point, allows everything to be smooth in texture, without gritty pieces, lumps, or thick-thin portions of food. As someone who does not spend a lot of time in the kitchen, I find this quite the chore currently. I do enjoy making food for him and hope that once we have our own home, our own kitchen, and our own freezer, it will become more routine. Not to mention that I feel bad using the Vitamix before 10A and after 7P. It’s 2-horsepower motor is NOISY!
Ian’s foods also go though *boosting.* Boosting protocol is a way to add calories to foods, getting more bang for your buck, if you will. There are high fats, moderate fats, and non-fat boosters. Examples include oils, salad dressings, cheese, infant formulas, avocados, Duocal etc., and coconut milk. These *boosters* bring Ian’s purees up to about 31 calories per ounce. Since his recommended daily caloric intake is just above 1,000, the boosters really help him. In addition to boosters, Ian has thickened formula by mouth. The thickened liquids help him *feel* the drink and give him time and texture to move it around before immediately sucking it to the back of the throat, coughing and sometimes gagging. We use both Simply Thick and make our own with Xanthan gum and water. Simply Thick comes in Nectar and Honey consistencies.
|commercial food and drink thickener|
|mix 1tsp with 3 ounces of water to make homemade Simply Thick....|
shake really hard and let sit in fridge overnight, shaking intermittently
|tablet generic label|
|liquid generic label|
Overall, Ian’s retching has been much improved, both my medications, and by his eating real food. While Ian’s Compleat Pediatric is blended real food, he isn’t eating by mouth and following the typical digestion process. Compleat, by the way, is the only blenderized diet sold today. It is a fairly new product and allows patients to use a *real food* blended diet when caloric and content monitoring is still in high demand. Ian has been using this formula since September. However, it is tube fed only and is not meant for oral feeding because of it’s horrific taste. Ian has been drinking Nutren Jr, another Nestle product for his oral meals. All of these things have helped minimize Ian’s retching.
Ian continues to have fun around the house and like playing with the other kiddos. There is an eighteen month old here that he is quite taken with. He follows her all over the house. Another boy, twelve years old, plays great with Ian. He likes to chase after him and try to keep up. They play with the ball a lot downstairs in the playroom. There is also a six year old girl staying here who just started the feeding program last week. She is a blind former 23 weeker who is incredible! She and Ian love laying together, both here at the house and in the clinic. She likes to push him around in the little car and they enjoy taking wagon rides together. I find he is happiest when he is with the other kids, laughing, and running around.
This past week, he started counting to ten all by himself. His biggest trouble is getting from two to three. Often times it begins one-two-one-two-three...... Four, five, and six seem to be the favorite numbers right now; although seven and nine are a close second.
We continue to work on positive reinforcement with the feeding program and introduce new things slowly, giving him a chance to “feel-it-out.” He is always being challenged. Each day brings new accomplishments, new uncertainties, and new hopes. Overall, Ian is advancing beyond expectations. We have three weeks left in the program. It has been going by so fast. Tom will be coming the last week for his “week.” At the end of the eighth and final week, there is a very small graduation ceremony. The kids have little hats and gowns, for all of about two minutes. Only one kid graduates a week and there is clapping and pictures.
Thank you AGAIN for all the cards, gifts, prayers, and love!!! Ian is Mr. Popular in the house and always seems to have mail or a package waiting for him. He loves getting mail, and we love all the support!