It's been way too long since I posted an update on here. So here are 10 things that have changed since my last post.
1. Divorce
Eli's dad and I seperated in 2014. It took a while, but we are on good terms now. We Co parent as well as we can considering how far apart we live.
2. We moved to Indiana
The boys and I moved from Texas to Indiana in 2014 after the separation. It definitely makes co parenting more difficult, but it was the right decision for me and the boys. I have more family in Indiana, and it's just nice to have them around.
3. Eli talks
Eli started talking in 2014. He now talks in complete sentences. He can be a little hard to understand sometimes, but it's so nice to be able to have conversations with him. He's so funny, and says the craziest things. He keeps us laughing for sure.
4. Eli eats a blended diet
Eli no longer eats with a feeding pump. In 2015 we started him on a bolus blended diet. He now eats at normal times like every other normal kid. He uses a brand called Real Food Blends. It's been a game changer for him. He has so much more energy now. He runs, plays, jumps, spins in circles. He's still pretty small for his age. He's only 35 pounds, but he's gotten a lot taller.
5. I got remarried
June 2017 I got married to an amazing man named Jason. He's been such a great addition to the family. He's patient, kind, and loving to all 3 of us. I am so grateful to have him in our lives.
6. Dakota and Eli fight like cats and dogs
You can tell the boys are brothers, because they fight about everything. It gets really annoying, but a few years ago Eli wouldn't have been able to verbally fight with his brother. I just need to keep reminding myself of that, but I am a nornal momma who can only hear fights about the color of the sky so many times.
7. School
Eli started the 1st grade this year. He has an amazing nurse that stays with him at school. The school has been great with making arrangements for Eli, and making sure he has what he needs to succeed in school. They're a great group of people, and I feel blessed that they've made school so easy for him. Oh and Eli's favorite subject is PE. Who would of thought he would love PE, and his PE teacher would be his favorite teacher. They have a special bond.
8. Stay at home mom
Eli makes it pretty much impossible for me to work. I've tried a couple times to work part time, and I always end up having to quit. Eli always ends up getting sick. We dont have home nursing, so when he's sick I have to pick him up from school and take care of him. It kinda sucks, but we make it work.
9. New trach length
Eli now has a custom length trach. His tumors were collapsing his airway, so they had to make the trach longer to hold his airway open. They wanted to put him on a vent, but we still have a DNR for him. We want him to live life to the fullest, and we think a vent would only make it harder on him to run and play the way he wants to play.
10. New hospital
In September we will be taking Eli to Cincinnati Childrens hospital. They are going to be running a bunch of tests to see if he is a good candidate for airway stents. These stents would be amazing for Eli. His left lung has been almost completely blocked for a few years now by the tumor. If they could put these stents in and hold open his airway it could change so many things for him. We know the tumors can't be taken out, but if we can make life better for him, and he can live a happier and easier life then let's do it.
Well those are the main changes in our lives. I'm going to try and start blogging again. It's still a very therapeutic thing for me to do. I think I'm going to try and do more than just updates on Eli though. I want to be able to share the things that our entire family deals with as a special needs family. I want to share products that help Eli. I want to share how I stay organized as a stay at home mom. I feel like Eli's story touches so many people, but if another mom, brother, sister, etc comes across this blog I want them to see that there is hope for happiness in this crazy life, and that they're not alone.
