It is rare for things to be simple for us. Everything seems to be an effort – a challenge. Bailynn, from day one, threw the whole compass of our lives out-of-wack. So, when things do go right – I kind of can’t process them. I wonder where the hidden camera crew is hiding.
My last week in a nut shell:
Monday I spent doing inventory with my business partner, JoElle, and getting some business hashed out. Check out our website, it’s pretty awesome. While we were running up and down stairs, counting rental items, cataloging and chatting (oh, and watching our 7 girls between us), I was also being bombarded with phone calls from doctor’s offices and trying to contact the nutritional supplement company that Bailynn can tolerate to see if they provide their product to any Medicaid Suppliers (FYI they just call yesterday to tell me they don’t, after 2 weeks of calling them). {I should note that last week, 4/16, I had a procedure done that has really taken the wind out of me and I haven’t felt very good. I still feel blah.}
Tuesday I spent dealing with a new onslaught of doctor calls, and a family crisis that I am not ready to mentally accept, as well as doing some business. I am still trying to contact the dumb nutritional supplement people, now trying to handle family crisis and diving into business stuff to get my mind off it all (Thank goodness we are off school till June – Homeschooling rocks). Then one of my best friends, Beth, sends me a text about RealFoodsBlends that she saw at a convention last week. She’s a dietician and lets me rant to her about my to-skinny-child when ever I need. I couldn’t be more thankful. It is a food for tube-fed people that is made of real food and real ingredients (novel right, but trust me, most supplements are scary chemicals and fake everything). I go and check out their website and I am blown away by their product and it is made in Indiana! How cool!. I called IU Medical, who happens to be a provider, and got Bailynn’s pediatrician to order it! Though Bailynn drinks everything by mouth, this food will still work for her and I’m thrilled. I’m just warned that I may have to doctor up the taste a bit, can do! I spend the rest of my day crying too much and wondering why some people make such heart wrenching choices.
Wednesday I have the WORST HEADACHE of all time!! No lie! I felt like my brain was going to rip from my skull. My head hurt so bad I threw up – 2 times. I got my daily responsibilities in order and put my phone on silence (I was told to do this – thanks JoElle & Gina) and pretended the world was gone – after my husband came home to rescue me of course and our lovely Piano Teacher stayed with me to make sure I was ok until then. I love my people. Sometimes life just kicks you when you are down.
Thursday I feel like a new woman. I’m fixing website things, working on business lingo. I’m trying to prepare for our vacation that is 2 weeks away and handling more doctor business….oh, and our credit card info got stolen AGAIN (thanks anthem) and Chase had to shut down our accounts, issues new cards, and place extra security measure due to our continuing issues. More money stolen – I need a big huge Internet sign “DEAR HACKERS, I HAVE 5 KIDS AND NO $$ FOR YOU!!” Where do I post? 🙂
Friday we get more devastating family news, a young life is lost, and we pray for others and their sanity. We thank God for the lives of our beautiful children and wish we could make the world brighter and less awful – we can’t. I spent my morning making a fun car ride game for the girls (with their itty bitty’s from hallmark.. I made a whole fake Jewel Heist for the girls to solve. I’m so crazy excited about it!) and trying to push all the ugly out of my brain. I often revert to cleaning and list making in these situations. Our new Chase cards come via UPS and Bai’s new Hip-Aductor Pillow. Then my phone rings. It’s IU Health asking for more info, that I assume it’s for intake, and my phone COMPLETELY QUITS! My phone was hacked in February and I’m concerned that this is happening again. I restore it and figure out how to call them back. What a mess – never easy, remember. So, I finally find the lady I was talking to and she tells me that Bai’s new RealFoodBlends is on a truck and heading towards our house with a 14 day supply – From Indy! They drove it From Indy! Are you kidding me!! They drove her new food 3.5hours. 84 pouches of RealFoodBlends arrived at our home just before 4:30pm. I felt like it was a trick, some mess up. Nothing should be this easy. Never has anything for Bailynn been this easy. It looks disgusting, but she has tolerated it for 24 hours – it does require taste enhancement. That is a good sign. In 2 weeks, if she does well on it, we will order a full months supply. Pray Medicaid does her right and does not give us trouble with this new food. I don’t want to think about how much money worth of food in boxes is sitting in my entryway (ready to be taken to Bai’s shelving in the garage).
For now we are not making any decisions about Bailynn’s kidneys or surgery. We will wait till we return from vacation. Bob and I are exploring all non-surgery options first. Gives us peace. She should have peace as well.
Welcome to my crazy world! Find some joy in this next week and the weeks to come, it’s hidden in with the ugly. I found some joy hidden in the surprisingly amazing staff from IU Medical that made sure Bai had those supplements and drove them from Indy to us. Amazed, simply amazed.
For Her.
Bobbi
5pinkpeonies.com 