Lots of puke 4 days in...

After 4 full days of a blended diet and no formula, Liam's thrown up every day but yesterday. I am hoping he turned the corner yesterday and we will see no more vomiting or at the least they will be few and far between.  I am praying so! Cleaning this food out of the carpet is much more difficult than the mass produced formula. I immediately shampooed the carpet after yesterdays fiasco and even though it was done within 5 minutes, it still stained the carpet.

I have made the blends fresh every morning and have varied them only a bit. I want to get really familiar with doing this before I vary too far from this recipe. The kefir I use for the base is expensive but extremely nutritious and full of probiotics which I feel are really important for Liam's gut to heal. He does suffer from constipation so I need to get some blends that will help with that, incorporating prunes or prune juice.

This was the variations I used this week:

2 cups Kefir 460 cal
1 jar baby food fruit 70 cal
3 tbs peanut butter 380 cal
2 tbs molasses 120 cal
1/4 cup black beans 55 cal
1/4 cup cooked steal cut oats 170
multivitamin
Grand total of 1255

2 cups Kefir 460 cal
1/4 cups cooked steel cut oats 170 cal
1 oz raisins 90 cal
1 jar baby food fruit 70 cal
1/4 cup black beans 55 cal
3 tbs olive oil 360
2 tbs molasses 120
multivitamin
Grand total 1325 cal

I would like to be able to have a large list of foods at the ready that can be easily blended up and that I can buy based on sale prices like I do the rest of my family. I cook based on what I get on sale each week so I can keep our grocery budget low. Now that we are financing Liam's food it has to be planned into the budget as well and I want to be able to do it as cheaply as I can but still with all the natural ingredients. Since Kefir is so expensive (about $1 a cup) I need to get a better budget base and go from there. I think I'll look at coconut milk next.

Here we go

Today is the day! Liam is quitting formula cold turkey. He's been on Nestle Compleat for the last two years. While I have thoroughly enjoyed the convenience of having the formula delivered right to my door and there not being any preparation for it whatsoever, I just open the container and pour it in his tubing, I am thrilled that he will be getting off of the corn syrup.

While there is much debate on whether corn syrup is good or bad, I am going to go with the assumption that is is bad. It is the second ingredient in Nestle Compleat. That means, that out of the 38-40 ounces of formula Liam gets each day, he is getting mostly water and corn syrup. That corn syrup is probably coming from GMO corn. That means it's genetically modified. 

I took my concerns up with the Dr's over the years and got poo pooed about it. I know it's the contributing carbohydrate but, come on. Recently, my fave ped said that having that much corn syrup was no different than having a corn based diet. Um. HUH? Who eats that much corn? And since it's most likely GMO, that would be a no no for anyone's diet let alone my little challenged guy who has gut issues to begin with. 

Taking the plunge to get him off though has been conflicting for me because I want to make sure he's getting a nutritionally balanced meal while keeping volume low and calories high. I wasn't sure where to start. Enter in the internet, a little bit of math and research, and you get me to today- throwing off scientific idealogues and going with my gut.

Here's what I blended today:
 

2 cups kefir 440 kcal

1/4 cup steel cut oats 140 kcal

2T molasses 120 kcal

3T olive oil 360 kcal

1 banana 105 kcal

1 baby jar of turkey 70 kcal

1 scoop of protein powder 120 kcal

multi vitamin

Makes 32 ounces.

 

I threw it all in my new Blendtec blender (which is fantastic btw) and came up with this bad boy blend right here. It only took 30 seconds and Lian has a full days worth of food, packed with all natural ingredients, no GMO anything, and enough calories to fulfill his daily intake. With a little free water added in, Liam is getting everything he needs, made at home and not in a factory.

 

 

 

G-tube good food

Heehee-

That moment when Liam does something new and the therapist gets excited about it and I feel guilty because they don't know we did stem cells. =)

I'm trying to get my hiney in gear and get Liam off of his formula. It's Nestle Compleat. I have been thankful for it these past two years but the past few months it has really started to concern me. For several reasons I don't think it's wise to continue Liam on it.

1. Our diet is not meant to be the same food day in and day out.
2. The second ingredient is corn syrup. Eww.
3. Transitioning to home made foods can decrease vomiting and reflux.
4. It's healthier.
5. I feel compelled to provide nutritious food for Liam like I do my other kids even though he doesn't eat completely orally. And now feel guilt that I haven't changed it before now.

I just can't imagine eating the same food day in and day out and how I would feel. I would think my body would be sluggish and aching for something new.  I asked Liam's ped what she thought about the second ingredient being corn syrup. She didn't think it was an issue and said it was no different than having a corn based diet. I don't think anyone eats that much corn based products. And knowing that a large protion of the corn grown in the US is gmo, it makes me uneasy about the corn syrup. The first ingredient is water, the second is corn syrup. So, out of the 40 ounces of food he gets each day, the percentage of corn syrup is pretty high. A friend of mine has their little one see a chiropractor regularly. She said the chiro knows when her daughter has had a soda. I don't know how that chiro can tell, but it got me to thinking about just one soda and it's obvious for her what it's like for Liam getting a diet of mostly corn syrup.

I have heard from other parents who had kids that vomited frequently and/or had reflux see a large decrease in those issues once the diet was switched off of commercially produced formula. Even if that was the only benefit it would be worth it to switch Liam. His reflux has gotten better and his vomiting is in smaller amounts as of late, but sometimes he cycles like this so I don't know if this is a permanent change or we will have the reflux monster show up in the morning. But, getting him on natural, healthy foods where I can add supplements for digestion have to be better than what we are doing now.

While the formula has been great for us for convenience and has been touted as a great formula for Liam, I think we are finally at the place and time where it needs to go.

I'm praying we will be able transition smoothly and make this a positive, much needed change for his diet. Cuz, I don't need more mom guilt!

Just not enough...

There is an apparent and obvious discrepancy in the amount of food Liam should eat versus how much his body will let him eat.

Yesterday he had his 6 month check up with the GI at their satellite clinic in Wilmington. We were supposed to have an endocrinology appointment immediately following the GI, to talk about his growth, but they had to cancel.

Imagine my surprise when the practitioner told me she does most of her work with endocrinology!

We talked about Liam's height and weight issues. He is only growing about 3-4 cm a year. The average child grows 7. While his slow height growth doesn't set off any alarms (children with CP who can't bear weight don't get good growth) it's his weight that seems to be the detrimental factor.

And while I thought we were doing great with his feedings (he hasn't vomited in months and we are now up to 5 oz at a bolus) he still isn't getting enough. He is holding steady at 25 lbs and has been hovering at the 24/25 lb mark for the last year.

Liam gets 3 cans of formula a day (about 24 oz of formula plus 7 oz of water) and they want to him to get 5 cans (40 oz of formula plus 10 oz of water).

I don't know how we are going to accomplish this without making him eat all night long while he is sleeping.

According to the NP, Liam isn't getting but 750 calories a day and they want him at 1200.

And if we still can't get him gaining wait with 1200 calories a day, then we will look at growth hormones....which I've heard isn't necessarily a bad thing for kids with significant CP.

So, I am to try and up his feeds as I see fit and hopefully get him at or near the goal within the next three months. The NP in Wilmington is going to see Liam every month and keep a close eye on his length and weight and hopefully we can get this boy growing. Afterall, he needs good caloric intake to grow his muscles as well!

I just hope he tolerates the changes and we can keep everything down.

GI follow up

I finally took Liam in to the GI for his post op check up.

They didn't harass me for being almost 2 weeks behind. =)

I actually got some really good information.

Liam is having major granulation tissue problems. It originally started at the one spot I showed you guys before and has spread all the way around the stoma. It makes his tube leaky and ugly looking. It definitely isn't the pretty one you see in the take home g-tube video!

I realized, after watching the Dr, that I do not use enough silver nitrate to head off the tissue. I was following Dr. Kid's example and just putting a bit on the edge of the tissue, being a bit too conservative. Dr. Gut slathered the entire stoma with the nitrate, numbing the skin in advance and sealing it to prevent any damage to healthy tissue. By the time we got home over half the tissue had sloughed off. Once we get the tissue down to a small size, I can keep it away with some steroid creme.

I also got to meet with our amazing nurse practitioner and the nutritionist who shared my concerns about Liam's continued use of Boost Kid Essentials for all of his caloric needs. I hate to admit that I only recently looked at the formula and noticed that the first two ingredients are water and sugar! I couldn't believe it! I've been feeding him this stuff for over a year!

They also set up a feeding schedule that will hopefully help him with not only his reflux but will help me take away the night time feeds. As it stands, I am feeding him 16 ounces while he sleeps! I am not fond of that idea at all, reflux can continue unabated through the night and feeding him stuff to reflux is not the greatest of ideas.

So, we are switching him to Nestle Compleat which is REAL food (real chicken stock, cranberries, etc) in a drinkable formula and we are going to take an hour to feed him 125 ml 6-7 times a day.

We are also upping his reflux meds for now and adding in some probiotics.

Hopefully these steps will keep him from vomiting so much.