MommaMalia Blog: Tales of The Feeding Tube

Unofficial Weight Check

Posted on: January 18, 2011

Maila does not not have insurance right now. I am still having issues with the state. Malia has government insurance which is great insurance but having it can have it’s draw backs. There is a LOT of red tape and sometimes you can fall through the cracks and it takes a long time to fix issues. That is what is happening to us. Someone entered the wrong information while processing our paper work and my daughter got dropped from her insurance. They are fixing it but it is taking awhile.  Unfortunately this is delaying medical care….but I can’t complain too much because it is government insurance and the insurance is great. Her doctors are great…the care is great. So, I am just waiting for everything to work its self out and hopefully we can get Malia seen by a doctor really soon.

However, in the mean time, I weighed Malia “UNOFFICIALLY” on the scale at home and was suprised by the weight…but not in a good way.

The last time she saw a doctor, back in the fall, she FINALLY reached 30 lbs and was in the 10% for her weight. She got taller and the doctors loved her progress. A few weeks later I started helping my husband at work and had to slow down on the bite sessions we were having. Thus reverting back to her eating food on her own, unstructured. I weighed her in December and she dropped weight to 29.5 lbs. Not much, but I was not too concerned because she does that sometimes. Holidays hit….her birthday hit and life got crazy busy. I new she was not eating as well and bite sessions slowed even more because we didn’t have as much time to focus on them. If any of you do therapy bites….you know it takes a lot time out of your day to do them. So I was a little afraid to weigh her again on my home scale. This is when I started to become nervous that she was loosing more weight. Well, I went ahead and weighed her a few days ago and she dropped to 28.5 lbs. I don’t know how this is in reference to her percentage since I can’t take her to the doctor’s office. I blame myself for her regression and realized that she isn’t ready to eat in unstructured ways all the time. The structured meals work. Even though I don’t always like to give them and I think they are tedious…they are necessary and I should be doing them more.

It just goes to show you that FTT can wear you out. You can get burned as a parent constantly having to deal with feeding tube woes, therapy, doctors visits and so on. Always having your game face on all the time isn’t as easy but it is necessary. If you ever get burned out by FTT, don’t worry I have been there…heck, I am there! Don’t worry or feel bad. It happens. We are all human and these things happen. I remind myself every day that I have to remain positive and pro active for my child in order for her to be healthy and thriving. That is why Malia and I are back to doing our bites more often.   Hopefully, in a few weeks, I will be blogging about how her weight being better and how we are back on track.

If you are tracking your child’s weight with my child’s weight…28.5 lbs is the new number. Malia is 4 now.

Hope this blog finds all of you and your children well!

Hugs, Tianna

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4 Responses to "Unofficial Weight Check"

Hi T,

I just sat down to feed my lo and was wondering how you are doing… we are in the same place as you are. I am burnt out. It is exhausting and somewhat depressing doing this all the time. Not sure what else to do or how else to deal with it, but we are losing weight also.

Hey Kelly,

How is your LO doing? I was just wondering since you said your LO lost weight too. How much did your LO lose? Malia is staying the same now. Can’t seem to get her back over the 30lb hump. It’s frustrating. I know it sucks right now. I think everyone is burnt out. Hopefully it has gotten better for you since you posted this comment. Hugs, Tianna

how long do you have to do structured feedings like this before she should be able to eat a normal meal in a normal meal setting?? This is my big fear…what you are explaining.

We are at the beginning of our journey. My daughter just started tube feedings before Christmas and she is gaining but she is still having problems tolerating feeds (she has motility issues). She will be doing the 4wk intensive feeding therapy program at CHOP but she does not currently weigh enough to qualify. So she gets the over night feeds plus 9oz during the day plus whatever she takes by mouth. They are estimating that probably by summer she will be able to qualify.

I get the basics of how the program works and trains them to accept food. But eating properly within a family is more than just being able to accept food. Do they also train them how to eat a meal within a family setting. Meaning it is dinner time, the meal is put in front of her, the entire family sits down to eat, and she eats as well along with the family???

Jamie

Hi Jamie,

I am so sorry I am just getting to this comment! I could go on forever talking about this subject. =0)

When we first went into the feeding center we were told that we would be feeding her bites for 6 months to a year. This is probably what they will tell you too. It is coming up on a year in May. So obviously we have skipped the 6M mark and are shooting for a year now. I wouldn’t be surprised if we go over a year. Just assume you will have to do it for a year. That way your not disappointed, like I was, when bites lasted after 6M.

We still eat as a family at dinner time…but all the other meals of the day are bites sessions. It is tough to get bites in if you are out and about, running around or spending time at someone’s house all day. I try to bring the bites if I am going on vacation. Sometimes I don’t get bites in during the day because we are on the go and just don’t have the time. It’s a pain to work them into your daily life. But, they are working for my daughter. She eats better this way. So, I make it work as best as I can.

My husband and I had the same concerns as you with the family meal time. We actually talked to the feeding team about this exact subject. We enjoy eating dinner as a family. It is very important to us to do that. So, I try to get Malia’s therapy bites in before dinner so we can eat as a family at night. I usually feed her bites for breakfast and lunch. She is supposed to have 3 sessions a day but I am lucky to get in 2 a day. By dinner time she can sit down with us and eat as a family.

As far as the feeding center goes….they have not taught us how to feed her in a family like setting. The 4 weeks you are there are only dedicated to teaching how to give the therapy bites.

However, the feeding team does encourage sitting as a family and eating dinner together in an unstructured setting. But, they don’t teach it…at least not to us. They may teach this later when they start to wean children off of bites…but I don’t know that for sure.

In an unstructured setting Malia can take up to an hour to eat her food. We are usually done before she is. So family meals can be…rather stressful trying to get her to eat. The feeding center told us not to stress out. Family dinner is to relax and enjoy. They told us to just let her eat however she eats and if we are done…she is done. Even if she has a full plate of food. They told us that if we feel she is not eating well during dinner then we can do a shorter bite session a little bit after dinner is over. Ask questions while you are there. The feeding center does listen to your grievances and they work with you to come up with solutions to your issues.

We asked them if they will eventually start weaning her off of bites so that she can eat like a NORMAL child. They told us that they will eventually show us how to wean her off bite sessions…but, we haven’t reached that point of therapy yet. I am looking forward to that day we start to wean her and she can eat like normal again. But to tell you the truth…she doesn’t eat well unless in her bites sessions. She is clearly not ready to eat on her own with out help.

When I find out how CHOP weans the kids off of therapy bites I will let you know and/or I will blog about it.

CHOP is a great place for feeding. Hopefully your LO will take well to it and will gain the weight soon to be able to start. If you start in June you will be able to do a lot more during your downtime at the hospital, so that will be nice. If you have anymore questions about the program let me know. I will try to answer them to the best of my ability. I hope I answered your questions. Keep in touch!!

Hugs,
Tianna

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