Eat Happy!

Eat Happy!

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Friday, March 22, 2013

Children's Hospital of Richmond: Day Feeding Program WEEK EIGHT... The FINAL WEEK

This was our final week of the program, WEEK 8! Phew, what a long, but short eight weeks it was. Times like these seem to go so quickly at times, and other moments drag. We are certainly ready to get home and return to “normal” life....... but with Ian eating!

Ian finished the program at 26 pounds 13 ounces and 33.4 inches. That’s up about two pounds and about 1.5 inches since admission. From what we have gathered at the clinic, this is an impressive gain! It seems as though Ian’s experience has been overall impressive to the clinic. They expected progress, but I get the impression he more than exceeded those expectations. He looks and appears so much healthier and happier!



We finished the program as one of five patients. The clinic works extremely hard to keep five kids progressing strongly. We started with four, but a new therapist opened the opportunity for more admissions. This should help shorten their wait list as well. Prior to admission, I wondered why only four kids attended at a time. I now wonder how four kids can attend at a time.

I don’t know that I have ever seen such an interdisciplinary team working so hard for Ian. The day program includes a doctor, nurse practitioner and nurses, feeding therapists, feeding techs, psychologist, dietitian, social worker, and coordinator. It means *everything* to have so many clinicians all talking and working together for the same cause. The weekly conferences were golden! I wish I could do that with his physicians all the time.

DADDY TIME

This week was Tom’s chance to “feed-it-up” with Ian. He had a lot of chances to watch over the weeks. This was his opportunity to learn directly from the therapists and get a hands on crash course. He has done so well. He is a natural. He was able to feed him in the cafeteria during busy lunch time one day. With only having three days of feeding experience, I was impressed with how well he held everything together. Feeding a distracted child is hard enough.... a distracted troubled eater, even harder.... and a distracted, troubled eating two year old.... majorly difficult!! I knew Tom would be great!

Having lunch with daddy

lunch with daddy


ORAL INTAKE, PUREES, TEXTURES, BLENDING, TABLE FOODS, PM WEANING

When admitted, Ian was 100% G-tube dependent for nutrition. Now, he is only 20%. Ian is eating 80% of his calories by mouth in the form of purees, table foods, and formula. Ian’s approximate calorie goals are not far over 1,000. He eats over 800 calories a day by mouth! Tom and I were hoping the program would be successful enough to remove two daytime feedings. This would mean about 250 calories by mouth. Eight hundred, plus, calories certainly exceeds that expectation.

In the way of purees, Ian is a pro with fruits and veggies. He has no trouble chowing down on peaches, pears, apples, spinach, green beans, and carrots to name a few. he still struggles with entrees. Breakfast foods seem to be worse than dinner entrees. The breakfast foods in particular are starchy and thicker. The pasty texture of pureed pancakes and french toast is nothing like a blended apricot!

When Ian has these starchy entrees, gagging is much more prominent. We have been told that some of this is something he simply needs to grow out of. While he has trouble with them, a large part is sensitivity. Also, we have been told that some kids are just *gaggy kids.* That would certainly be Ian! We have been doing a food-blend working up to these entrees. In the beginning of an entree, 75% is fruit or veggie, and 25% is entree. Then 50/50% works it way into the blend. Ian will hopefully be able to move on to 75% entree soon. Right now, he is still 75/25 or 50/50 for breakfast entrees. All of the dinner and lunch entrees are 50/50 right now.

Which brings up another point....... pureeing. Over half of Ian’s nutrition comes from pureed foods. These are not commercial foods or “baby food.” Tom and I will blend all his food at home. The goal is to blend whatever we eat. A fair amount of Ian’s meals are pureed *meals.* Ian has eaten “roast turkey-mashed potato-apple meals,” “lasagna florentine-spinach,” and “chicken-rice-green beans.” Surprisingly, the meals we blend taste pretty good. I would think blending all that food *together* would be rough, but it isn’t so bad. Ian seems to like most of it.

Taking a Drink

Taking a Bite

Practicing Table Foods

Ian is trying all kinds of new table foods. His most recent adventures have been NutraGrain bar, Pop-Tart, and a pancake, waffle, or french toast, with syrup. He does have age appropriate chewing skills that are progressing well. He is starting to have some rotary chewing skills that allow him to use his teeth to grind foods. 

Ian spent some meals eating in the hospital cafeteria. The outpatient building Ian’s program was in has a smaller cafeteria with a few dozen tables. Eating at different times of the day, in a standard “restaurant-type” highchair gives Ian variety. He has had the chance to eat meals with different people around, various noises and distractions, and also different seating.

For the most part, Ian does pretty well. Some kids have a really hard time with all the distractions. Ian seem to use part of it to keep his mind on other things, helping distract from some of the undesirables of eating..... such as gagging. He has eaten there at various times of the day and faired pretty well. Learning to focus can be hard with lots of things going on. Feeding a two year old in a public place is always a challenge... even *without* feeding problems!

It felt very “normal” to feed Ian in a public place. Everyone has milestones that make things seem “normal.” Feeding Ian by mouth in a public place is definitely up there on our list. It is one step closer to leaving his feeding troubles behind us.

Ian is very close to meeting his calorie/volume goals. When he meets these goals we can wean the night time tube feeding. We also have permission to scale back even more on the night time meal as he gets closer and closer to volume goals. It seems very surreal to hear this. The dietitian told us that very soon, Ian won’t need that night time tube feeding! That is something I thought we might never hear... at least for a few more years!

GI ISSUES

Ian recently started having potty troubles when he started eating *real* food. Not being on a liquid diet changes the way your entire gastrointestinal system functions. We have been fortunate that he hasn’t suffered a huge disruption. He started taking a very small daily Miralax dose to help keep things moving. It has helped tremendously.

Ian has also shown some interest in the potty since we have been in Richmond. I do believe that sometime in the following months, he will be making some potty advances. We have come as far as him telling me when he has pooped and answering me correctly when I ask him. He even went over to the diaper bag at the clinic on day and pulled out the changing supplies, and brought them to me. *HINT* *HINT* mommy!

TUBE MEALS, DUMPING, PM WEANING

Right now, Ian’s only G tube nutrition is his 200mLs bolus meal at night. A bolus meal is a short, concise meal through the feeding tube. There is a variety of opinions on how long a bolus can be before it is considered continuous. Since Ian’s meal is only 30 minutes on the pump, it is definitely considered a bolus. Ian’s overnight meal before admission was 600mLs+ over eight hours. Cutting is back by 2/3rd is huge, as well as shortening eight hours to thirty minutes. Since Ian historically suffers from late dumping syndrome, post-prandial hypoglycemia, meal pacing is important.

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Giving Ian meals too quickly causes his stomach to release large amounts of foods at one time, causing a large glucose surge in the blood stream. The dumping is typically signaled by a large large in glucose readings. Then, after the large glucose load, the body releases a large amount of insulin to compensate. Insulin takes up glucose and stores it in the liver for later use. The trouble is, once the proper amount of glucose has been “taken-up,” insulin is still released. The *shut-off* valve doesn’t shut-off. As insulin is continually released, glucose continues to be removed from the blood stream. This leads to very low blood sugar, hypoglycemia. Some of these can be very dangerous. 

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Ian has had lots of dumping troubles in the past. Real food typically helps keep the stomach from releasing food too quickly. The stomach does not respond to tube feeding formula the same as oral eating. We had concern about still giving Ian a tube meal overnight. Two hundred milliliters, about seven ounces, in thirty minutes is a big deal.

So far, things are going well! Ian has not shown any dangerous signs of dumping and we are continuing the 200mLs in 30 minutes. His endocrinologist is on board and is comfortable with Ian’s progress. This is so wonderful for Ian. As long as things stay well, once he is done eating from 10-10:30P, we can remove is tube extension and support belt. Then, he can sleep in what we would consider “normal” settings.

Not having Ian hooked up to a pump and IV pole overnight would mean a “big boy bed” in the near future. Changing eating, potties, and beds is way too much overload for little Beaner, but on the horizon at least. The thought of Ian sleeping without medical supplies is such a great thought!

As I mentioned previously, Ian is very close to meeting his calorie/volume goals. When he meets these goals we can scale back the night time tube feeding.... and even remove it entirely! If I hadn’t been so overwhelmed and shocked, I know tears would have been streaming.

MEDS

We made a final “in-program” medication change this week. When Ian was admitted, he was taking four daily doses of Benadryl to help control mucous. It also, indirectly suppresses the gagging response of the vagus nerve and vomiting reflex in the brain. Ian started his Benadryl regimen to help minimize retching from his hypersensitive vagus nerve back in December 2011.

We noticed by trial elimination in the fall that the Benadryl was *certainly* helping... but he was still having significant retching and mucous issues. Ian started taking cyproheptadine, Periactin, a few weeks ago. Periactin is another antihistamine just like Benadryl, but works slightly differently. The nurse practitioner told us that some children simply respond to different meds better than others, even within the same drug classification.

Ian has done well with the Periactin... well enough that he has weaned to two doses of Benadryl. Ideally, the goal would be to remove one or even both of the Benadryl doses, and plug in another Periactin dose. Right now he is taking two doses of each in a 24 hour period... centered around his “needs.”

Right now, Ian does not need any medications overnight. He has a medication dose when we feed him at night. But this is before we go to bed. His next medication dose isn’t until 5A, when Tom is getting up for work. We can finally sleep through the night... well, Tom can.... he has been the one getting up over the last year and a half to do the overnight meds... so I can sleep. I know he will be happy to have the uninterrupted sleep!

CLINIC RESOURCE

We agreed to be a *touchstone* for interested families. The clinic likes having families for potential admissions to speak with. Tom and I are always open to these opportunities. I think having someone who has been through a similar experience, or considering a similar experience, is sometimes the most helpful. I remember a lot of times when I wished I had someone to relate to our experience.

FUN

Ian has had lots of fun this last week. He had time to be silly and play outside. His new “WOO OUTSIDE” chant always makes us laugh. He has especially enjoyed the playground at the nearby elementary school. They have a large collection of fun equipment to climb on. They also have an outdoor musical classroom with cool instruments. Ian really enjoyed running, jumping, and climbing on the playground! We were able to capture a lot of great memories in photographs. Ian made sure to have his super-cool sunglasses when he played outside. “Bright outside” he would say!

 


"Outside!"



"Woo Outside"




"I-A-N..... R-O-H-R!"


Mommy's little organizer!!


The Ronald McDonald House here in Richmond is developing new advertising and marketing media. Professional photographers came to the house this week to help develop a new brochure. They had previously donated their services for Christmas last year. The house was part of the Holiday House Tour for 2012.





The photographers were generous enough to offer their photographs to the families. The house will choose from the photographs taken to design the new brochure. There is a chance our family will be featured in the new advertising! Very cool. I’m excited to see the photographs and to have some new pictures of the three of us.

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Ian has made an incredible journey over the last two months. He has come from behind against a lot of odds. He certainly is not finished his journey with food. With a firm establishment in place, Ian can continue to expand his diet with tastes, textures, and volumes. He has a lot of “chewing” work to do to build endurance and strength.

Ian will attend outpatient therapy once a week to help him advance his skills. We’ll travel to Richmond on Thursdays to see his therapist. We will get to see the same primary therapist from his day patient program admission.

Tom and I are excited to see where we go from here. There is a big transition period once we get home. Ian will no longer be in a setting where he “eats.” Being back home will bring him back to a place where he “doesn’t eat.” Turning home into a place where he “eats” will take some time, just as it did at the clinic. With good skills in place, the transition should progress with few hiccups.
I find describing Ian’s journey with food is best said with a “running track” analogy. I often feel that as soon as we have run enough laps to get ahead, someone comes and picks us up.... and moves us back. It feels good to have such a large amount of the race behind us. Ian is eager to eat and actually enjoys eating. He asks for foods and actually tries eating them. Sometimes he even runs to his feeding chair with smiles and says “EAT.” Watching Ian eat is like watching a dream come true.

Our goals for the program were: 

**To increase Ian’s willingness to try foods** 

**To increase Ian’s oral food intake while decreasing tube feedings** 

**To create a healthy and happy relationship with food.** 


These were created by Tom and I at the beginning of the program. Ian has achieved all of these goals and has a lot of growing to do. The most important goal for Tom and I was #3. Ian has developed a relationship with food that is open to exploration and acceptance. Tom and I couldn’t ask for more from our amazing hero!

GRADUATION

There is a small gathering for graduations. The staff and team members all come together in the Day Program waiting/play room. The kids can wear a little gown and a cap that everyone signs with nice messages. It is nothing formal. Ian also receives a certificate for completing the program. He was adorable in his little cap and oversized gown! Graduation was immediately after his second meal, before the third meal. This is usually Ian’s nap time. After the graduation, we came home and skipped the final meal. This way, Ian didn’t lose nap time. It was a very proud moment for all of us to celebrate all the hard work and progress.


primary feeding therapist, Miss Kacie


Ian diploma and graduation cap (complete with Wonder Pets Ming-Ming sticker!)
Ian’s dietitian gave him a graduation present. She bought the book “Just one Bite.” It is a book about animals and ‘their bites.’ Ian likes watching all the animals eat. The illustrations are pretty cool and the book is quite large. It’s pretty cool that the animals take their “bites,” just like Ian!!

Ian's new book!

RONALD McDONALD HOUSE GOODBYE

Saying goodbye to our new friends and “family” at the RMcD House is difficult. After living with all of them for almost the entire eight weeks, sharing stories and heartfelt emotions becomes a natural therapy. We have met many families with many different histories. Right now, eight of the nine bedrooms are families who are here for two months or more. That means we saw the same people every day, sometimes for the full eight weeks. The children made friends, playing together during meal times and in the evenings. A lot of the kids are in programs, and have down time at the house.

The staff has become a family away from home. Their warmth and support made our experience lovely. They always had smiles for Ian, and he for them! When we come for outpatient therapy, we may spend the night occasionally. We have to stop by and visit our home away from home! Thank you to everyone!

Saying goodbye to Miss Allison, Director of Development


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As always, we are very thankful to all the family and friends who support our family. We never feel alone. The love is always nearby! While we have a long way to go, I feel like we have finally turned a corner with a big step forward............



Pinch me........... I must be dreaming!