MommaMalia Blog: Tales of The Feeding Tube

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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)


Once again it has been awhile since I have posted so I am going to try to catch you up.

Wow! What a busy time it has been in our lives. Malia has started pre-school. As a stay-at-home-mom it is hard to let her go somewhere with out me during the day but it is fun to watch her make new friends. She has been doing very well in school. I have been keeping tabs on her eating with constant updates from her teachers. They have reported to me that she eats her snacks very well and have not had any problems getting her to eat or with pocketing. My daughter has recently befriended a little boy in the class and struck up a little romance.  He asked her to be his girlfriend one day and she accepted. LOL She came home the other day and said she had a boyfriend. My husband and I thought it was really cute. We laughed when she couldn’t remember what his name was. Ahhh, children at this age are so innocent. The teacher told me they are best buddies in class. They sit next to each other during snack time, eat together and chit chat. They believe that he is a good influence on her eating.

Malia goes to back to CHOP in November. I will let you know what happened. I think we are going to get a good report. She is doing very well on her own. Bites are annoying but helpful. She is showing great progress in wanting food and pockets less. Her eating style is still very slow but hopefully, as she gets older, that will improve too. If CHOP decides that she is doing well with out the feeding tube then I will be able to call the CHOP supply rental place and return all of the feeding tube supplies!! Oh happy day! Hopefully CHOP will feel confident that she will not need a feeding tube any more.

I have already been preparing Malia for the “FeedingTube Fairy” to visit our house after the feeding supplies have left. She is VERY excited. We are going to Target this weekend to get ideas on what prize she may want the “Feeding Tube Fairy” to bring her. I am making a big deal about this and hyping it up. I want her to feel a great sense of accomplishment. FTT has been quite a journey for all of us but mostly for her. She deserves to be happy and to not fear the Feeding Tube anymore. She truly is my little hero. She has had to endure a lot. I can’t imagine what it is like to have  a feeding tube inserted down your nose and then have to wear it on your face like a scarlet letter. It is not like she is a little baby who doesn’t really know what is going on. She is 3 years old. Fully conscious of the tube…totally scared of the tube. My baby. She is so brave.

Here is a link to my Blog about what a “Feeding Tube Fairy” is: https://mommamalia.wordpress.com/2010/05/22/tales-of-the-tube-pics-at-chop-and-the-tube-fairy/

* Side note: This past weekend I joined over 2,200 walkers and crew in the Susan G. Komen Breast Cancer 3-Day Walk in Philadelphia. It was one of the greatest experiences of my life. Walking 60 miles and raising $2,300 to participate seemed like a daunting task back in April when I signed up to do it. Through perseverance and determination I was able to help fight against Breast Cancer and also personally reach goals mentally and physically that I thought I could reach. It was amazing! You should try it sometime. I am including in this update a few photos from my walk. Enjoy!!!

Malia visits me in holding before closing ceremonies. She was cheering on the other walkers just arriving after walking 60 miles in 3 days.

My mommy walked for me because some day I will have boobies and she doesn't want me to have to grow up with cancer or knowing someone with Breast cancer.

My family came out to support me during my walk.

My teammate and I after finish our walk on the final day

This is a house along our walking route that was decorated for our Breast Cancer Walk. We got so much "support" on our walk from everyone. It is great!

 


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