The Life and Adventures of Six Little Monkies

Saturday, February 11, 2012

Feeding Tube Awareness at OneTrueMedia.com

How have you been raising awareness this week? What else could we do to raise awareness?

This week for Feeding Tube Awareness Week we have kept in contact with the school about our daughters changing eating needs, made some Tubie Friends, one to send out, and some to share with John Hopkins when we see them again on Friday.

We have also spoken with everyone we see about feeding tubes especially when they ask up about our kids stuffed animals with feeding tubes. They have been told about the benefits of feeding tubes, how they have saved the lives of our two kids, save the lives of many people every year, and will continue to do so. Here is our video on how feeding tubes have impacted our lives.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Another video with 222 other families who all tube feed as well I believe made by the Feeding Tube Awareness group

Make a video - it's fun, easy and free!
www.onetruemedia.com

Finally Mailing the Duck

As if waiting a whole day beyond when we found out we could mail the duck off to the toddler was a long time to wait (ok to a 6 yr old it is) we finally got to mail the duck off this morning to the toddler waiting for a Duck Tubie Friend.

Here is Ellie walking down the hall at the post office with both the duck and Mumble in her hands

Stuffing the duck in the envelope

Look who is in the back ground

All inside

Sealed up and ready to go. At this point someone from behind the counter asked what we were and if we knew the child the toy was being sent off to. She was really surprised that we do not know this child especially with how excited that Ellie was to send off the special toy. As we told them the story behind Tubie Friends and showed them Mumble and talked about the purpose of these they got really excited and told us they can't wait to see what other toys we bring in too send off.

Leaving with an excited child and only Mumble in hand. The duck has been sent "flying" to its new forever family!

Friday, February 10, 2012

100 Day List for Ellie

Chantelle's 100 day list homework

I could carry 100 "papers."
I could not carry 100 "couches."

I could eat 100 "fruit snacks."
I could not eat 100 "ice cream scoops."

I could put 100 "skittles" in my cubby.
I could not put 100 "shoes" in my cubby.

I wish I had 100 "water melons."
I am glad I do not have have 100 "wolf spiders."

Medical Records being Copied NOW!!!

I just got back from the military records office where I asked for a copy of all the records I had for her and all the records they have for her. The main records person who has been working with our family let me know the records are not in date order but she could get me a copy today. I informed her a copy today even out of date is awesome as we can take these records and place them in order ourselves so we have them ready to drop off on Monday.

The rush on getting a copy of her medical records is her pulmonary appointment that was supposed to be the end of next month is now next Friday. Yes that is Friday the 17th!!!! And this appointment is with the comprehensive team at John Hopkins. My afternoon will be spent placing 4"-5" of medical records in dated order. I am just glad the copies I have are already in date order (whew!).

Awareness Topic: Coping with Tubie Friends

Some how I got my days and posts switched up so I am posting what I going to post from a prior day here. This is easily done with multiple apts in a week, having your life constantly turned upside side down with back tracking steps, and trying to fit everything that needs to be done plus fun into your life so the kids continue to love life. This fits here perfectly after last night and the pictures of Zach and Ellie helping make our first batch of Tubie Friends.

Topic: How is coping with a feeding tube made easier with a Tubie Friend?

Kids with Food Allergies states coping with a g-tube can be difficult for children. The site talks about several mothers who have performed “surgery” on stuffed monkeys with the goal to help make coping easier for their children. Once the surgery was completed the children learned about their feeding tubes, tube care, getting medication, and other treatments through medical play. These mothers have their children gained better coping skills because of their Tubey Monkeys.

Another such program Gabe’s Chemo Ducks started for the same reason. Back in 2002 Gabe was diagnosed with cancer, and his mother trying to help him understand what was going took a stuffed duck, added a chemo port, and through play he began to not only understand but found comfort in his medical toy. Eventually, this blossomed into a non-profit organization reaching out to hospitals across the nation.

Just like the mothers within Kids with Food Allergies and Gabe’s Chemo Ducks, as a mother I too have that creating Tubie Friends have helped my children learn to cope with their medical issues. For nearly eight years our home has been blessed to have Tubie Friends in our home. Our children have lovingly fed their babies and stuffed animals. We have made many Tubie Friends over the years. Our children have learned about tube and site care, feeding, button changes, giving meds, nebulizer treatments, other medical treatments. Our Tubie Friends have had sleep studies, IV’s, nebulizer treatments, blood pressures taken, hearts “listened to,” blood taken, and surgery.

When going into surgery the child sees their Tubie Friend being put under too then they wake up with their beloved Friend at their side. Their beloved Friend has “awakened” with them with an oxygen mask on just like they have. This helps to reduce fear both going into the OR and waking up in the recovery room. I have found the lengths that the Children’s Hospital staff goes through with these children amazing to not only make the children feel more comfortable but also confident with all the procedures and oftentimes invasive procedures they must face.

Tubie Friends have been found in the school classrooms, school nurse offices, with new caregivers, sometimes new doctors and nurses, home health nurses, and are wonderful teaching aids. They teach about the care of the child. Tubie Friends are often found with specific tubes, wires, ports, IV lines, feeding tubes, oxygen tubing, sleep apnea probes, pulse-ox monitors, anything and everything relating to the child.

When a child seeing their Tubie Friend with just as many tubes and wires as he or she has, they do not feel as different and gain confidence. This confidence is further gained as self-care skills improve concerning the tubes and wires all over the child. Nurses and care givers can have the child clean or “feed” their special Friend reducing anxiety levels. Doctors and nurses can use the child’s friend to explain in advance what procedure will take place. As the child gets older he or she can use their friend to explain to their friends what is going on and why they have so many procedures, tubes, and wires.

Because Tubie Friends have been such an asset to our family we have teamed up with http://www.facebook.com/tubiefriends to help other families get Tubie Friends as well. What is Tubie Friends?

Tubie Friends was started by a group of moms whose children have been or are currently using a feeding tube as a primary source of nutrition. We're currently working with several Children's Hospitals across the country to provide stuffed animals with feeding tubes to as many children as possible, preferably before they go in for surgery. We've seen what a difference something like this has made for our own kids and want to help make the transition from eating by mouth to eating through a tube as easy as possible. In addition to bringing comfort to the child, these "Tubie Friends" can also be used as a teaching tool for family, friends and caregivers.

This year I have three children that want to have Stuff a Toy birthday Parties so we can get stuffed animals with feeding tubes then donate some to John Hopkins Children’s Hospital and others to children for Tubie Friends through the Tubie Friends group. Our first party will be near the end of May, one will be on Halloween night, and one around Christmas. We are hoping to toss in a couple more parties throughout the year as well.

The kits we will be using will be from https://www.bdaybears.com/teddy-bear-and-animal-kits.html and will come complete with an animal, t-shirt, birth certificate, heart, and stuffing. While there are 24 animals to choose from we will likely give party guests only 1-2 animals to choose from making the purchasing easier for us.

Learning Self Feeding Skills Again

This morning Ellie wanted to do her breakfast feed by herself so I helped her learn how to dump the formula into a syringe and watch it slowly go down. She had a blast doing this while she did her nebulizer treatment as you can see from the following pictures

Just love her eyes in this picture

Thursday, February 9, 2012

Making Tubie Friends

Today was a fun and exciting day for both Ellie and Zach. I had received 2 packages while the kids were at school. Of course Ellie was dying to know what was inside both. The bigger box was full of flat (dead) stuffed animals. Upon seeing them she asked all excited, Are those the Tubie Friends we have to fluff and stuff and make alive?" I let her know they were. Her curiosity got the best of her and she was bouncing off the walls to know what was in the smaller box. Also she just HAD to know if we were going to "fluff and stuff" the animals tonight. Originally the plan was not to stuff them tonight. But she was so bummed about not being able to eat dinner, yet so excited about the Tubie Friend Project and finally getting to "fluff and stuff and bring to life" some animals, that I could not tell her no.

The first thing she did was to take the 5 AMT buttons we had received and lined them up, then picked 3 unstuffed animals for tubes. She picked out 4 shirts, (we got 5 buttons, 5 extensions, and 5 shirts from AMT to use with this project). 1 button was going to replace the button that Ava chewed the middle out of from her penguin.

Thank you Ava we now know that the buttons are very solidly placed... A 2nd button was needed for our Dr Monkey, our display and explanation toy for the project. This toy will be used as we tell about the project and that the toys are coming with buttons, some are coming with extensions, and others are coming with buttons, extensions, t-shirts, and syringes. Every toy given out through Tubie Friends will have a MIC-key or AMT button, and either a g-tube, j-tube, jg-tube, in special circumstances we can add other items such as trach's or other medical devices that can be attached. We have one mother that has found a way to attach a port that is removable using velcro for her TPN/g-tube child. The possibilities are endless with these wonderful medical/teaching/comfort toys.

The other buttons went to a duck, lion, and unicorn. The duck is off to a toddler very soon where the toy will be greatly loved, the unicorn is off to John Hopkins Children's Hospital GI clinic, and the lion well he was claimed by our 7 yr old who had a feeding tube for 4 years.

Well I told Ellie where the big bag of stuffing was in the craft room and sent her off to find it. Within a few minutes I had a giggling bouncing 6 yr old come bounding into the dining room where I was already preforming "surgery" and adding buttons. With total excitement exploding from her entire body she took the first toy (the unicorn) and lovingly and carefully started stuffing this toy. Soon she was excitedly helping to stuff the unicorn. Zach was in and out as the lion was next ready. Later he came back to discover his sister had taken over the stuffing of the lion and was not happy about that. However, his unhappiness was short lived as he and Ellie finished up the lion together.

Once the duck was stuffed I stitched the backs of all three toys so they will not come unstuffed, then both Zach and Ellie playing in front of the camera with their Tubie Friends and the 2 they helped with as well.

Showing off in order Mumble the Penguin, the Duck off to its forever friend very soon, Dr Monkey, Pink Unicorn, and Brown Lion (still waiting to be named)