What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding improved your child’s life? Dispel myths that people have about tube feeding.
Many people think that having a feeding tube holds you back from life, but I promise you it is the opposite!
The girls are able to grow because of their feeding tubes. They get the nutrition their bodies need so that they are able to have the energy they need to play and to be kids. Before the girls got their tubes they were both very weak and lethargic, barely waking to eat. Their bodies were fighting, now their tubes make it so they can eat in a way that is safe for them.
While you may use spoons and forks to get food into your body, my girls use a feeding tube... just like your silverware is a tool to get food into your body, for the girls their tube is a tool that gets food into their body, their tool just happens to be surgically placed in their body.
Go through this blog, look at the amazing life my kids have, their tubes give them the energy to be able to do those things.
What questions do you have about feeding tubes? What would you like to learn this week? What questions do you have about the girls' medical needs? This is a week where our goal is to educate, feel free to comment questions below.
Today was an interesting day! When we were at Ronald McDonald House last they asked us if we would be willing to have photos taken for their magazine that they send to people who are involved with the house and we said we would be honored to. Then they asked if we would be willing to do an interview for an article in the magazine, since the next issue is about volunteers and we make it a point to also give back to rmh along with being a family that is served there. So this morning we got dressed up and headed to RMH so I could do the interview and the photographer could take pictures of our family. We had a great time. The girls were even treated to a trip to the magic room! After we left we headed to therapy. After therapy we were debating what to do next and we decided to head over to some friend's house to hang out since we were in the area. My phone rang and it was a number I didn't recognize however it was the same area code as the hospital so I picked up... it was a local news reporter. I commented yesterday on an article about the children's hospital we use and their new policy that until the flu calms down, children under the age of 12 are not welcome to visit the hospital. I commented that I understood why they have to have a policy like this but as a mom of medically complex kids my heart feels for the parents with kids in the hospital right now for "normal medically complex" things and how those parents are figuring out logistics. When one of our girls are in the hospital I have both of the with me during the day at the hospital so that Brent can still work but with this current policy we could not do that. I know their goal is to keep kids safe and I get why they are doing it and I don't think they chose that lightly, I just know there are currently many families at RMH who are now trying to figure out logistics and the balance between their sick and healthy kid just became harder. Well the reporter saw my comment and was calling to ask if we would be willing to be interviewed for the news tonight. Well we just so happened to be at a friends house who also has a medically complex kid that is currently going to school virtually because it is not safe for him to be in school with the current flu epidemic. This really interested the reporter so they came over to our friends house and interviewed us. Nothing like inviting a reporter to your friend's house lol! It should be on the news tonight at 10pm. (HERE is a link to the story)
I also wrote a blog post last night about some law stuff going on right now. If you are interested click HERE to read the article.
Also remember that the deadline for the band-aid drive is the end of this week! We are over 4,000 band-aids so far for Children's Hospital of Wisconsin. There is still time if you are interested!!!
 |
| Jilli the other day helping Lydia get her shoes and coat on |
No comments:
Post a Comment