Brown and Pink Polka Dots : Trip to Indy, birthday and other stuff

This weekend my mom and I took a trip we have been trying to take to IN for 5 years. Let me give you a little history. My mom's best friend lives in IN and they have always been my aunt and uncle. When I graduated high school I moved down there to be their live in nanny for their son who I call Cheese (there is a story to that, I have a nick name as well that goes with my love for coffee). Also in IN is another close family to me, the Hobson family. The Hobsons use to live one block over from my parents and they gave me my first baby sitting job and became a second family to me. I call their daughter my sister (we look a like). Both of these families have shaped who I am today. IN is a ways from home though and with health needs the past 4 years it just has not happened but this weekend we found a little time to get away.

My mom slept over on Wednesday night and had to come out early while we were out to dinner with Jaime and Jason because they were closing roads between my parents and us due to all of the flooding. We got up Thursday and left late morning and drove down. The girls did great in the car. The last stretch of the trip was horrible rain to the point when we got to my aunt and uncle's the road was flooding. Apparently the rain follows us! We had a calm night at the house and watched Moana.

Friday we got up and headed to the children's museum. This is the children's museum I grew up going to. The girls had a great time and there was so much that Jilli was able to do in a wheelchair. By the time we left the girls were both so tired! We played Sorry at the house and hide and seek.

Saturday we headed to the zoo and the Hobson family met us. I was really young the last time I went to that zoo so it was fun to see it again. Jilli liked it and Lydia loved being held. Jilli started to overheat so we called it a day and headed back to the house and watched Lady and the Tramp. Jilli got a Lady plush at Disney but she had never seen the movie so it was fun for her.

Sunday we work up and packed up and went to brunch. We then headed home however we took a detour home. We just finished watching a vlogger (Justin Scarred) drive down Route 66 from end to end and back and Jilli fell in love with Route 66. Honestly Route 66 is not something that I have ever thought much about however learned so much about our country through the vlogger and it is so fun to see Jilli learn about something new and then want to continue to learn more. We drove off the normal way home and went to Joliet and drove down Route 66. Jilli was so excited! We stopped at the Route 66 museum to learn more and picked up a little Route 66 coin purse and playing cards. We then drove down the road for a while until we met back up with the interstate. Jilli was so excited. Things are all about adapting. Driving the whole Route is not practical right now in our lives but we found a way to make a little bit of it work.

Another thing Jilli is really loving right now is salt packets! Jilli now needs salt added to her formula. She loves it when we got to a restaurant and they have little salt packets because I have measured the amount inside of them I know how many of the are equal to the amount she needs. Brent bought some salt packets for her and we keep them with us to mix in her milk through the day but she gets so excited when we are at a restaurant and they have salt packets and we use one of those packets to mix into her milk. She got to do that both that the museum and the zoo this weekend. It is all about finding ways that work best for her and this is really exciting to her!

I also talked with her GI/dietitian team this week because her blood levels for CoQ10 still came back lower then they want so they are upping her dose by another 200mg a day! I am so glad I pushed the issue when the team from the hospital wanted to lower her dose and that I contacted GI. I am also glad they ordered the bloodwork so we could make a choice based on what her body needs and not just some textbook written amount. But to add that amount we need to add 20ml more fluid a day so I needed to talk to her dietitian to figure out how that would work best so I think we have a plan right now that will work. Hopefully now she is on the right amount for her and that GI worked with us on this.

This weekend was also D23 and if you don't know what that is, its the big nerd fest for Disney lovers where Disney talks about all of the things that are coming out soon. As being a Disney lover I was watching updates all weekend. I kept saying it was my dream to go to D23 some year however today as I am home and watched vlogs and podcasts I am realizing that is not an option for me... there were latex balloons all over the place from costumes to boths it just would not be a safe thing for me. I feel right now that allergy is getting in my way more and more. It felt like for a while there it was not making much of an impact on my life however I also couldn't go to our church picnic because they decided to have a balloon artist so I couldn't go to church at all this weekend (part of what made it a good weekend to go to IN) because it was not safe for me. I feel anxiety when I get invites places because I worry about if it will be safe and I hate making others feel bad when I show up someplace and then have to leave quickly once I know there are balloons and it sucks for me to. I just got an event invite for a fundraiser at a restaurant but the restaurant has balloons that it will blow up for kids if they ask so I can't go. Its just frustrating and I feel like this allergy is a pain and I hate that for some reason it seams like balloons are getting more popular again (Holiday Inn just posted an ad this weekend about kids getting balloons at check in and all I could think of that it is another place to add to the list of places I can't go). It is not that I wallow it in and I am very capable of finding other things to do but it just stinks to be left out because people really like something that could kill me.

A plea from me as well, I have seen far too many parents crushed and hurt by comments to special needs families I interact that are heartbroken lately about people blaming them for their child's medical needs. I wrote a blog post about this a while ago however each time this comes up again my heart breaks for the situation again. Most of the time these people are using prosperity gospel teachings instead of the Bible to make their claims, however what it does to these families and their faith and their interactions with the church weighs hard on my heart. You can read what I wrote about it HERE but please think before saying something like that.

On a happier note, I want to thank Brent, my dad, my brother and our friend Ben for working on our house this weekend. I had put out on facebook a few weeks ago that we needed help with a few house projects and this group of guys stepped up to help. While our basement didn't flood out with all of the flooding we have been having an issue lately with any time it rains are getting some water in our basement. There was one finished room down there and we knew the water was coming from behind the drywall so that all needed to be ripped out so we could find the exact problem so we could come up with a plan to fix it. We also needed to put in a landing off our front steps as they ended into a pile of mud and it was making it harder for oxygen deliveries. We also had a few other little projects that needed to be done (someone hit our mailbox.. and other little things) and the guys worked hard this weekend on it and we are hoping to finish more up next weekend. We have planned to do some of these projects a few times but then the girl's needs would push it back so I am thankful that we were able to check some things off. We still need to figure out how to install our new gutters (ours are really bad and we bought new ones but have a two story house so we need more then the ladder we have to do the project) and fix the piece of siding the wind took off. But one thing at a time.

Tomorrow is my birthday and I am excited to be spending the day helping someplace that has helped us a lot in this last year of my life. We are headed to RMH to help with filming of their new promo materials. I am excited that they asked us and Caroline's family to do this and feel very honored. I will let you know when the video comes out. I have had some great birthdays (spent my 18 & 21st at Disney World) and some less then great ones but I am excited this year to spend it helping someplace to means a lot to us. If you want to see another promo video for someplace else, Never Say Never Playland put out their video this week and a really cute little girl is in it! Facebook keeps asking me if I want to donate to a cause for my birthday and my issue isn't that I don't have a great cause, it is that I am involved in so many! From RMH, to the Children's run walk, to Never Say Never, to Tubie Friends, we work with lots of great non for profits that there is no way for me to choose!

Well it is time to put the lap top up and head back downstairs. My hubby noticed I was worn from the kids today (oh Lydia, I love your determination but man mommy is tired right now from you choosing not go fall asleep until 1am on Thurday night and then after 11pm the following nights and getting up in the middle of the night with you as well, and your need to see everything and test how far you can push things, I was worn by the time he got home) so I am up in the guest room writing this post while he has the kids in the living room which I am grateful for a little bit of calm but now it is time to jump back in and get the kids baths! We got Lydia a new bath today because her in the big bath is not working and she doesn't work in the baby one anymore but in the big one it takes Brent and I both holding her as she wiggles and ties to stick her head in the water which for most kids I know is not a big deal but for her could mean a hospital say so hopefully the ducky bath Target had today works. I was never a fan of those bath seats for toddlers but man right now I wish they sold them again (I know why they don't and why they pulled them I also know our situation and think it would help) but hopefully this new thing works! Here is to trying!