Eat Happy!

Eat Happy!

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Sunday, February 24, 2013

Children's Hospital of Richmond: Day Feeding Program WEEK FOUR

FOODS

Ian ventured into a whole new week of foods. He had Pop-Tarts, NutraGrain bars, sliced and cubed cheese, cream of wheat, and oatmeal. Ian is working on building skills to move beyond phasic chewing. Phasic chewing is best understood in my eyes as quick, short crunches, like a squirrel. Ian eats his “crunchy foods” like Cheetos and chips, veggie sticks, etc. with little contact between his teeth. He does not crunch fully down in order to bring his top teeth and bottom teeth together. Getting him to slow down helps work on chewing more fully.

Ian moved up the table-food ladder with Pop-Tarts and NutraGrain bars. They offer more resistance and more moisture. This makes chewing more challenging. Ian did very well. We could certainly tell it was difficult for him. You could see the concentration on his face. He seemed to have the toughest time with cheese. He had both sliced pieces and little mini cubes. The cubes were a bit easier for him.


Hooray for eating!





Ian has new crunchy foods to work on at home. They are mostly for experience and not for nutritional value at this time. He is unable to consume enough volume for the calories to be all-inclusive. He is working with veggie sticks, mini Oreos, Honey Nut Cheerios, Teddy Grahams, graham crackers, and cheddar cheese Cheetos. The first bite is always hard for him. He usually gags, but most of the time it is smoother sailing after that.

He took a while to warm-up to the cream-of-wheat. It was initially mixed with bananas. I was a little anxious since bananas were always a tough food to get Ian to eat. This proved to be no different. Ian did a lot of gagging on the cream-of-wheat with bananas. The clinic always mixes in a fruit when eating a starch. Later on, it was mixed with peaches. He had a smoother time with the peaches and has been doing well all week with cream-of-wheat. Ian also tried creamed spinach, greens beans, and peas. He seemed to do very well with all of them after getting used to the textures. He liked green beans the best of the three.

Ian progressed to a larger, rounder, broader spoon this week. It is more of a child spoon than an infant one. There is still one more size for him to work on. The volume of the bite on the spoon varies depending on the exposure of the food and the response. We have quite the collection of spoons now.

Ian is also able to take thinner purees. The thicker the puree, the easier it is for them to feel, move, and manipulate. As children progress, the purees can be thinner. Children with esophageal motor concerns and pulmonary concerns also consume thicker purees because of aspiration risk. Thankfully, we have not had that concern with Ian.

Ian is still getting two prescription formulas. He continues to receive the Compleat Pediatric overnight. The dietitian wants him to remain on this formula because it is *real* food blended into a commercialized formula. This food helps prepare his stomach for accepting more food orally. He has also started an oral prescription formula. The Nutren Jr is meant to “replace” the daytime tube calories that are not met with purees. Compleat Pediatric is meant for tube feeding only and is not for drinking. Thankfully, Nutren Jr comes in vanilla flavor and is very similar in osmolarity, protein, carb, fat content. The carbs are a little lower since he enjoys eating more carbohydrates by mouth. As he learns to eat more table foods, carbs will be the major initial foods.

AT HOME ASSIGNMENTS

I also had a puree lesson this week. This sounds easy, but it certainly is not! Thankfully, I have our Vitamix from our blenderized diet days. Pureed foods need to be perfectly smooth. Even foods like applesauce and yogurt sometime need pureeing. They gave us a little handbook that helps with recipes and techniques. We also learned about *boosting.* Ian’s food is *half-strength boosted.* They call it “half strength boosted purees" (HSBP). HSBP have 1 tsp. booster for 4 ounces of puree. If you use oil or butter, the amount is cut in half.

The book gives lots of natural and commercial examples that significantly increase calories. Examples include avocados, salad dressing, oils, coconut milk, etc. I find it hard to match the perfect booster with the food. The good news is that things such as Duocal and Benecalorie can be used to boost as well.

I have been doing meals at home in the evenings all week. I am giving Ian’s 4th and final meal of the day. He has been able to take enough with his three treatment meals and one at home meal, that he did not need a daytime bolus tube meal all week.






ADJUSTMENTS

Since Ian has been consuming a lot more purees (solids) and less tube meals, his GI system is re-regulating. Right now, we are trying to ward off the constipation. So far, we are skirting around the issue. He is certainly working harder than he was, being on a liquid diet, but is getting enough free-water in his diet to keep the pace going. It is amazing how many people ask me about poop every day!

Ian is also adjusting, or shall I say, *expressing* himself a little more “terrible-twos-ish” lately. Like I mentioned in a previous post, being away from all his things, his friends, his school, his bed, his home, being around new people, new smells, and new faces... while in the meantime, being made to work on something six hours a day that he dislikes and fears more than anything... does NOT sound like fun to me either. Thankfully, Ian’s interdisciplinary team has a psychologist on board. She met with us about some different ways to handle issues at home, feeding related, and non-feeding related. The last handful of days has been a huge improvement. He is still a bad listener at times and whines, but we are making progress.

PROGRAM PERKS

The program has wonderful perks for parents. The clinic has support groups every Wednesday and Thursday. Wednesdays is comfort hour with the Chaplain. We have an activity or project each week. We have made Valentine sachets, played dice games, and next week is baked potato bar. Once during the eight week program, a masseuse comes for parent massages! The social worker has a support group on Thursdays. All of the parents gather with her in a conference room, have lunch, and talk about the program and the kids..... and whatever else might come up in conversation.

It is a wonderful way to let go and relax, away form the children. The feeding techs at the clinic watch the kids for the hour. The women are great about getting Ian to take a nap and making sure he has a clean diaper. I am thankful they are there for our support, so that we may take a break for ourselves.

FUN TIMES

Tom’s parents and brother were here for a visit on Sunday. We all ventured to Children’s Museum of Richmond. Ian had a blast with an apple tree, ambulance, tree house, and art room. He certainly gave us all a workout chasing him around and climbing after him.

Fishing with Daddy at The Children's Museum of Richmond

We were able to have some fun at the house too. Ian loves to venture around the corner into the office at the House. He loves to schmooze on one of the directors, Allison. She loves Ian and is always asking us if she may take pictures of him for the FB page, etc. He has been appointed “Director of Fun” in the house.

Newly appointed Director of Fun

Thanks to Presidents Day, we got to enjoy an extra day with Daddy. Ian loves running around with him, wrestling, and rough housing. I love hearing the belly laughs. He also loves playing with the other kids in the house. Right now there is an 18 month old and a 12 year old with whom he has made good friends.

Playtime!!


PROGRESS

Ian gained a lot of his sickness-weight-loss back. He still has a net gain of a few ounces. Although, I feel that Monday will be a big gain! Mondays are conference days. This past Monday, Ian’s report looked fabulous! He had increased intake, initiation bites, and positive responses. His gagging, coughing, and negative vocalizations continued to go down.

Moving back to the no daytime bolus meals......... Ian’s calorie consumption was high enough all week that he only had his overnight tube meal, amounting to 600 calories. His 400+ calories from his daytime meals were successfully met with his treatment and at-home meals. Ian had between 450-650 calories by mouth each day by meals. If he continues to take these volumes, we will be able to wean down on his overnight feeding of Compleat Pediatric.

Week One (UL) Week Four (UR & Lower)
Better coloring, fuller cheeks, and happier!

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Once again...... I’m sure I am leaving things out! The only thing about doing a weekly update is I forget things. I am thankful to remember what I can and pass along not only an update, but experiences and knowledge for others. Ian is doing very well and we are so very proud of him! Thank you for ALL the letters, cards, and gifts. Ian loves opening the cards and they line the inside of our door in our room. Thank you also for the love and support that *hugs* us every day. Knowing that all of you are thinking of us gives us strength. We are forever grateful.