I am glad today is over. It was such an emotional rollercoaster. WARNING: This is a very long and complaint filled post! If you don’t want to read it I understand but I needed to type it out. I think it will help me feel better!
First I get up get Dustyn dressed and out the door for school. I see the fog and it looks so beautiful. So of course I take a picture. I am editing it with Rhonna Designs App and come across the quote, “Inspire Someone Today.”
I think to myself, I have really been wanting to do a Random Act of Kindness. So I write on Instagram asking if friends wanted to join and do a RAOK and tag with #InspireTodayRAOK. No one commented or participated right away. It was early so I said I will give it some time and you know people could do it later today or tomorrow or sometime next week. No big deal.
I come inside and rush to fill out some paper work because I was going to check out a new doctor for the boys. I wanted to fill out all the information so if we did decide to switch it would all be done. Well reading through it said all patients are required to be vaccinated. I haven’t wrote much about it but Carsyn hasn’t been vaccinated since around 4-6 months when I started noticing something wasn’t quite right about him. Anyways with his Holoprosencephaly, I am afraid that all the chemicals in the shots would not be good for him. Since it is a neurological disorder and kids with HPE are prone to seizures I just don’t feel like it is a good idea. I call the doctors office and say I want to cancel the consult because Carsyn is not up to date on his shots and I don’t plan on giving him any shots any time soon. Well the office staff said it was fine they would let me sign a waiver. I meet the doctor and she is very nice but not very personable. I start talking to her about Carsyn’s history and why I have decided not to do shots. I then asked about the waiver. She said they do have a waiver but she highly recommends Carsyn get all of his shots. Again I told her my reasoning and she basically said my reasoning was all wrong and that cases with bad side effects rarely happen. Well HPE is pretty darn rare lady and my son has it. Anyways we didn’t really mesh well so I decided the move wouldn’t be for the best.
While I was waiting at the doctors office I decided to make this cute little instagram to encourage others to join me and inspire someone.
Again no one joined in. I guess I was already starting to get emotional because no one wanted to join in my Random Acts of Kindness.
I drop Carsyn off at school and he had a little green gunk in his eyes. His allergies have been flaring up again so we have been doing breathing treatments. Before I left I took a warm wipe to try and get the gunk off. I wiped for a bit and couldn’t get it off. Carsyn has really sensitive skin so after I finished wiping I saw it was red underneath. One of the teachers asked about it, I told her it is from me wiping his eye. Anyways they don’t say anything else and I leave to spend some time alone shopping at the thrift store. I was so busy shopping I didn’t notice the three missed calls. I saw them when I came out to the car and saw a text message from Carsyn’s teacher saying the nurse thinks he has pink eye and that his eye is draining. That he can’t come back to school until his pink eye gets treated or his doctor writes a note saying it is allergies. (At this point I had already scheduled Carsyn’s Doctor Appointment to check on his allergy stuff for the next afternoon) So I head back to school and pick up Carsyn. When I get there the red under his eye was faded, his eye was dry, and the whites of his eyes are as white as could be. I had already started tearing up because it has been before Christmas break that he has actually gone to school for more then a day at a time. I feel like I can’t get back into my normal schedule. I decide to call my friend Kimberly and my tearing up turned into a full fledged ugly cry. She probably couldn’t hardly understand what was going on.
While hanging out and waiting to get Dustyn from school I go to the Pharmacy to get Carsyn’s prescriptions. We do automatic refills and they text when it is ready. So I wait in the drive thru line for 15 minutes, because I didn’t want to get Carsyn out plus my eyes were all puffy. I get up there and they say only one is ready because I have to pay for the other one before they can mix it up. I told her I have never had to do that before. She asked if he had every had a compound before? I said yea only for the past 10+ months. I decide to go and get Dustyn, then go back an hour later (she said it would take 15 minutes). Well I wait in line for another 10 minutes. Again, don’t want to get both boys out. I get up to the window, same girl. She says it still is NOT done. Tears start again…. I am sitting there waiting, waiting, waiting, holding up the line and she keeps coming to the window saying it will be right up. Another 10 minutes later she hands the medicine to me.
The company we are ordering Carsyn’s wheelchair through calls while I was waiting in line at CVS. They say that everything is going through really quickly and they are submitting to insurance tomorrow and that the estimate Out of Pocket Expense after Insurance is $2,000. My jaw dropped. I knew we would have to pay some out of pocket but didn’t realize it was going to be that much. I am excited how fast it is going through, but also shocked by the amount. Side Note: We applied for Medicaid and SSI awhile back and Kenny made too much. My friend told me the Medicaid Waiver program is pretty good and acts as a secondary to our insurance. So I am going to apply for that tomorrow.
I was not going to let my bad day ruin my #InspireTodayRAOK. The boys and I head over to the SPCA and we get there at 3:25 (thanks to the slow Pharmacy) only to discover they close at 3:30. (Holding back tears). They do let us visit with a few while they bring them all inside and feed them. I decide that is not enough, so I talk to the manager and tell her I want to volunteer my time and take professional pictures of the dogs for them to use in their ads. We got that all set up. Can not wait for that, and share the cute photos with you all.
Still didn’t get anyone to join my Inspire Someone Today challenge. I asked some friends to help spread the word. Nothing happened. I know I shouldn’t get my feelings hurt but seems like whenever I try to do something cool on Instagram, Facebook, Twitter, etc I don’t get much participation. Really makes me sad and I feel like I didn’t really inspire anyone today like I wanted. One good thing that came out of it was my good friend Sarah sent me a Starbucks gift card. Which was really sweet of her and very much needed today. I think though I will just continue doing Random Acts of Kindness and people can join in when/if they want. It definitely won’t be only a one day thing.
Kenny also brought me home flowers, which was a huge surprise. I was not expecting that. Definitely made the rest of my night better. Plus I got to go out to Chickfila by myself and pick up dinner. Phew! Was nice getting a little alone time.
If you got through that entire post you are awesome. Again sorry, but just had to write it out. I feel much better.