MommaMalia Blog: Tales of The Feeding Tube

Posts Tagged ‘Walk

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:

* 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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