MommaMalia Blog: Tales of The Feeding Tube

Posts Tagged ‘Preschool

From my experience with Feeding Session Bites, here are a few tips I want to pass on that I have learned. If you have any tips for bite sessions feel free to post your ideas in the comment boxs.

TIP #1: DON’T SWEAT THE SMALL STUFF (AKA: DISTRACTIONS)

Most likely, you will NEVER be able to re-create the environment the Feeding Center provides for Feeding Sessions. You WILL have to deal with multiple distractions at home. So don’t worry about the distractions. Minimize them to the best of your ability and don’t worry if your child does get distracted by things in the home. IT HAPPENS.

*I think I stressed myself out when I first began bite sessions. I tried to re-create the Feeding Center environment at home and quickly realized it was impossible. Distractions were EVERYWHERE!!  If I didn’t relax and give in to the fact, that therapy won’t be as perfect as I had it at the Feeding Center, then I would have made myself absolutely crazy. I didn’t need to put anymore stress on myself and you don’t either. So my advice is…DON’T SWEAT THE SMALL STUFF.

 

Major Distractions at Home I Encountered And How I Dealt With It:

Distraction #1:     Pets

*My cat constantly wants to sit on my lap during bits and this is distracting to my daughter. My dogs like to hang out next to us ALL the time and eat the food my daughter might drop on the floor.

-A way I got around this distraction and you can too, is to put them away in a cage or in a room while you are giving bites.

 

Distraction # 2: Family and Friends

This is a big one. You think your family will cooperate with you…but they may not. Sometimes you family will want to talk to them. Or give attention to your child when your trying to ignore your child. They want to say hello when they come in the door and talk to them when they are trying to chew and swallow. Or bother them while they are eating. Your younger children will try to get your attention. The list goes on and on. Plus, friends can just randomly show up during bites….or call you on the phone…it happens.

1. Talk to your family and friends. Let them know what you are doing. If you have a scheduled time for bites everyday make sure you let people know not to call you during the time. If they are around the bites when it is happening make sure they know NOT to interact or talk to you and your child while bite sessions are happening. (Your child will WANT to get their attention, talk to them or show off for them. As long as your guests and family knows not to give them that attention you child will realize that getting their attention is pointless.)

2. One thing I did when I first started bites at home was make signs letting people know bites we were in session and not to distract us. I hung as sign on the outside door so people who may stop by are aware bites are happening. I also tell my family, in the house, that we are about to do bites and not to bother us.

3. When I babysat my 1 1/2 year old niece I made sure bites where given when she was napping or when she was eating her breakfast in her high chair. I would place her in a place where I could see her  but my daughter could not see her because my daughter would constantly try to get the attention of my niece and my niece would give it to her. Other children in the house are BIG distractions. Do your best to occupy them with toys etc.while your doing bites, if you are alone. If someone is home, have them take care of the little ones while your busy doing bites. If your children are older, try to get bites done before they get home from school. My Step-son is 12 and he still has his moments where he distracts his sister even though he knows not to bother her. It is better if bites are done before he gets home.

4.  Let your family know that they also have a crucial part in Bites and the health of their family member. Their part during therapy is NOT TO DISTRACT you. Tell them that their role is very important and needs to be taken seriously.

5. Don’t exclude your family….include your family. You can involve other children in the house with the therapy sessions by having them help you prep the food and clean up. This will hopefully help the family feel they are involved.  They may not be trained to give the bites but they can help in other ways.

6. Many people will be curious about your therapy sessions. If you feel comfortable enough, allow them to observe you during a session. Of course, make sure stay quietly in the background. By allowing people to observe what you are doing, your friends and family will learn why it is so important that they do not interrupt you or distract your child. Plus, they will be more inclined to understand the importance of therapy and why you are doing it. Surprisingly, especially for the skeptics, they will see that your child is eating better and the bite sessions do work.

Distraction #3: Everything else in the house (Phone, TV, Etc.)

Final thought: All these things I mentioned above, will distract your child. Many things you won’t be able control but you can try to minimize the distractions as much as you can. Administering bites in a quiet closed room is ideal and if you can do it that…then do it. But if you are like me and your main floor with the kitchen, dinning room and living area is a great room where everything is open… then try to minimize the distractions to the best of your ability. Don’t stress out too much. The important thing is that your child eats all of their bites. If this is accomplished…even with distractions…you have achieved your goal and should be proud of that.

CHECK BACK FOR TIP #2:

TIP #2: (USE THE TIME TO YOUR ADVANTAGE. Bites don’t always have to be Tedious)


Well, we are back to eating bites again at least twice a day. Malia gets bites at breakfast and lunch. She eats snacks during the day and eats dinner with the family at night. If she starts to gain a lot of weight…I def. know that I can’t slack on giving her structured bites. Just relying on regular unstructured meals won’t cut it. I also upped the amount of bites from 35 to 40 bites. It takes us about 30 min to serve her the bites…it can take longer if she pockets a lot. 12 min. or so to prep the bites and 10 min. to clean up after the bites.

Sample of what she had for breakfast:

*Feed Cup#1 – Cup #5 (Repeat 8 times)

Cup #1: One large Strawberry chopped and sprinkled with sugar

Cup #2: La Creme Yoguart

Cup #3: Whole Wheat Toast w/ Nutella cut up

Cup #4: Applesauce

Cup #5: Cream of Wheat w/ Whole Milk and Honey

As you can see…bites does give you a well rounded nutritious meal and it is a lot of food. (Even though it doesn’t look like it presented in the cups)

Here are some food items I use with her bites:

1. LA CREME YOGUART (Found at ACME/ALBERTSONS)

Serving size per cup

Calories: 140  Total Fat: 5g Carbs: 20g  Protein: 5g

2. NUTELLA (Found in the Peanut Butter Isle)

Serving size 2 TBSP

Calories: 200  Total Fat: 11g  Carbs: 22g  Protein: 3g

HAPPY VALENTINES DAY!!

HAPPY VALENTINES DAY TO ALL!!!

I hope everyone is enjoying their Valentine’s day. I don’t have too much time to write today. I have been REALLY sick this past week and it has set me behind in every aspect of my life. But, I promised I would update you on Malia’s new weight. I finally got her insurance again and was able to take her to the doctor’s office.

Age: 4 and 2 months

Weight: 12.7 kg (28lb)

height 0.96 m (3′ 1.8″)

2.07% growth percentile for weight

9.52% growth percentile for height

6.25% growth percentile for BMI

As you can see her weight dropped 2 lbs from November when we last saw the feeding team. It is a little set back but we will pull it up. I keep reminding myself that EVERYONE has set backs every now-and-then. We had a set back last summer when we went to Disney World. It will get better. As far has her mental development, she is fine. At Age 4 check up they check hearing and sight. She passed both of those tests. She even told the lady during her sight test that the moon she was pointing to was a crescent moon. Took the nurse by surprise. She was right. It was a Crescent shaped moon. HAHA. That just proves that an FTT kid can be smart as a whip!

We have an appointment in the first week of March to visit the feeding team for a check up. I am going to do my best to put some weight on her so they don’t even remotely consider tube feeds again. I knew, from home weighings, that she was around 28.5 lbs.  So, I knew I was going to get a number similar to that. The only reason I think she dropped a little more weight is because I have been sick with a stomach virus for the past few days and it was REALLY hard to feed her well, being sick. For two days I could barley pull my self off the couch and I only got off the couch in order to tend to her needs and feed her. Other then that…I couldn’t do too much. It’s not easy taking care of kids when your sick. It is almost like you have to be super human with a super human immune system so you NEVER get sick and can ALWAYS be there to clean house, take care of the kids and cook dinner when your husband comes home from work. If I go down…the whole house goes down with me. LOL The life of a Homemaker.

Anyways, I kinda went off on a tangent. HAHA. But if you were wondering what her new weight was for comparison…there it is.

HAVE AN AWESOME AND WONDERFUL DAY!

Hello all,

I hope that your Thanksgiving holiday was great! We ate a wonderful meal at my mother-in-law’s then I went and Black Friday Christmas shopped from 10PM to 7Am!!! I swear that someday we will be skipping Thanksgiving all together and going straight to Christmas. All of these stores opening earlier and earlier every year is getting to be ridiculous. Toys R Us was open at 1oPm! I got there at 11PM and waited in line OUTSIDE in the freezing cold till 12:30AM just to get in the store!!!!! That is how long the line was! INSANE!!!

So what is going on with us….A lot, as always. I used to babysit at home to make extra money but recently stopped doing that. I strictly became a full time “Homemaker” around August. Hadn’t been a full time Homemaker since she was 1 year old. I loved every min. of being at home with Malia and was excited to being doing just that. Now that I was not babysitting, I was able concentrate on just Malia and her needs. We got a lot of bite sessions in and my house was cleaner. Unfortunately, my husband still wanted me to bring in some sorta income. He didn’t like the fact that I quit babysitting. Our family business is expanding and he really wanted me to come work there.  So 3 to 4 days a week Malia and I now head to work.   I can only stay there for so long. She gets too stressed out if I put in a full day. Yesterday I worked from 11am to 5pm. She fell asleep in the car on the way home and refused to wake up until 8pm! She was up all night! It has been an adjustment for the both of us. I don’t mind helping out at the business but I really did like being at home.

Malia is also not getting her Bite Sessions in as much. Eating at the shop is very distracting to her and she tends to not eat very well there. She takes a really long time to eat when we don’t eat in a “Structured” way. This leads me to share with you one of a few issues we have been having with her eating, Post Tube. We shared this concern with her doctors at her last feeding team appointment. I hope to share with you more post tube issues and concerns we are dealing with in later blogs.

One of our biggest obstacles is how SLOWLY Malia likes to eat in her UNSTRUCTURED meal times. Sometimes I will literally sit for over an hour trying to get her to eat dinner. She will accept the food but chews it so slowly  that l I swear she is trying to turn the food into atoms before she swallows them. Plus, I feel like a broken record telling her time and time again to chew and swallow. There are times she will just stop eating all together and I have to remind her to continue eating. She gets very distracted during meal times and tends to forget to chew and swallow. She does this slow eating at the shop too and it is frustrating because I can’t focus on her eating as much as I could have at home and i feel like she is not getting enough food during the day.

My husband and I asked the feeding team doctors if some children just don’t have that urge to want to eat. You know, that desire to WANT to eat food. Like a chemical is not there in their heads to make them want to eat. We feel, our daughter could care less about food and just doesn’t have that drive to eat like most people do. In our opinion, eating is a chore to her. So we were curious to see what they thought about this. The CHOP psychologist told us that some people are like that. Some people don’t have the urge to eat as much as others do. It is not necessarily a bad thing but for adults…but for children it…it can be a problem. She gave it a name but I can’t remember what she told us it was called. The Gastro told me that one of Malia’s problems is that she doesn’t drink a lot of calories. Some children who don’t eat a lot of food usually make up the lack of calories in their drinking. Since Malia doesn’t like to drink a lot and when she does drink, she prefers water…she doesn’t make up her calories with her liquid intake. That is why we really have to push the food. And that is why….at one point…when she wasn’t eating well or drinking well we had to resort to supplementing her with the feeding tube.

Hopefully, Malia and I can find our grove,with my new work schedule, and working out of the house will not effect her health negatively.

I hope that your Christmas season is merry…and yes, I say CHRISTmas! LOL!

What ever holiday you celebrate may it be awesome!!!! I know ours will!

Oh, Malia turns 4 very soon. December 24th. Yes, she is a Christmas eve baby!! My little present from God. It’s a busy season for our family and I love every min. of it. =0)

Hugs,

Tianna

Hi!

Yes, I am still alive. I know it has been awhile since my last blog. It is funny. When I stopped babysitting and became a full time Homemaker again I thought that I would have ample time to blog. As it has turned out…I have blogged even less. My life has become so busy. Mostly, because now I can leave the house at will. Malia started preschool and dance class. My step-son started school and is heavily involved in football. I take hula classes and plan to start taking Zumba classes. Oh, not to mention I am walking in the Breast cancer 3-day walk. Fundraising…training…yesh! It is a lot to take on.

Plus, I went back to the gym. As many of you know, when your child is on a HIGH calorie diet and can eat anything and everything it tends to put weight on you as well as them. Any of you have this problem? Well, I do and that is one of the reasons why I have decided to go back to the gym and start working out. If not just to lose weight but to maintain my weight as well.  This has taken some time out of my schedule too. Too tell you the truth, I also want Malia to see me going to the gym. I want her to be raised around exercise and healthy living. My greatest fear is that Malia will get used to this lifestyle of being able to eat anything she wants. And when the time comes, when all of a sudden she can’t eat high calorie foods anymore, she won’t be able to control herself  and she will become…fat. Is it bad that I think like that? I want my daughter to be healthy. Not overly skinny but not overly fat either. I worry that she will, one day, flip flop and end up on the other end of the spectrum from where she it at now. I don’t know. Even though she is in the playroom at the gym she is still around exercise and people who are conscious about being healthy. I just hope that that lifestyle will rub off on her too.

Malia started preschool last week. This was the first time I ever had to take her to school. She only goes Tuesday and Thursday for half a days. I really wanted her to get out of the house and meet other kids. Also, her preschool gives out a snacks while she is there. I plan to talk to her teacher and find out if she is pocketing, not eating and showing all the bad habits I’m used to seeing or if she is eating her snack with out any problems. My hope is that she will mimic the other children and try to eat because they are eating. I have discovered that some of my daughter’s bad eating habits occur more frequently when I am around…go figure. (And I am always around!) By removing myself from the equation and substituting her peers in my place I really think that she will eat better. If this “experiment” proves true then I might consider next year putting her in full-time Pre-K, in order to help her eat better. I am starting slow with the school thing. Easing her in by half days and one snack. Then, if all goes well, She can go to school longer and possibly tackle eating lunch with out my assistance. (Remember – If my daughter is not eating in a  “Bites Therapy Session” she can take up to an hour to finish her food the regular way.) Malia doesn’t eat fast enough for me to feel comfortable enough to put her in full day pre-school. I can’t burden the teacher to take on the responsibility of getting my child to her lunch. Plus, I can just picture her sitting in the lunch room and eating her food alone while all the other children are playing because they all ready finished their lunch. Nah, I am not ready for all that. However, Kindergarden and 1st grade are looming in the distance and are quickly approaching. I know that it is critical to prepare my little girl to be able to eat in a school setting away from home and be successful at it. I would hate to have to reinsert the feeding tube so late in her life. Kids are less forgiving with the feeding tube the older they get. This reminds me…Malia has started preschool with out the feeding tube! THANK GOD!!!! I didn’t want her to be the weird kid in school with a tube in her nose. You never know how her classmates would have reacted to the feeding tube. It is so much better that we avoided the whole situation…for now.

So that is what is happening with us. Still trudging through “Bites Sessions” and under the care for CHOP feeding center. Our battle with FTT is ongoing. I can’t wait for all of this feeding stuff to end. I’m getting tired of it. Hopefully this blog finds you well. Hugs!

Malia standing next to her cubby on the first day of Preschool.

Please Vote for Malia!

MODEL SEARCH: PARENTING MAGAZINE

http://modelsearch.parenting.com/contests/showentry/347986?showH2HDetails=true

I just submitted the picture but zoomed in on her face. Vote for that one at this link:

Hi,
I just entered my child in the “Parenting – Baby and Child Model Search contest” and we need your vote to help us win!
You can view my entry and vote for me here:
Thanks and wish me luck!
Phillymom

THANKS FOR VOTING!


Malia

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