Hooray for going home tomorrow! Fingers crossed!

Today was a hard day. But I’m sure I’ll have harder. Ronan was in a funk. He fought with me the whole day and kept telling me I was mean for not letting him eat or drink. I was pretty emotional and seemed to cry at the drop of a hat. I need to decompress. Why don’t I drink wine again? I’d better take up knitting or something.

We had a not so good nurse. Our first one. Everyone else has gone above and beyond for us. Woody is here now, singing to Ronan. Calming him down. He had a full day of not being able to eat. Which was a mistake on the nurses part and I have been complaining all night to anyone and everyone. Ronan’s nutrition is super important now. For him to miss all his calories today is not o.k. That nurse will not be our nurse tomorrow. He also had anesthesia and another scan. That always makes Ronan grumpy. As soon as he woke up from the anesthesia, we returned to our room and he was poked and prodded at some more. Poor guy. He is at his breaking point. We also had to do his shot tonight which hurt me more than it hurt him. He screamed, “Mama!” for about a second and that was it. We ended the night with his least favorite thing; mouthcare. My little monkey is beyond beat. Our most favorite resident doctor, Katie, came by to see Ronan but he was hibernating. She brought him a monkey which was so adorable of her. We are going to miss her when we go home. She has been with us since we checked into the ER almost 2 weeks ago. Ronan would not let anyone near him, except Katie. She has been checking in with us even though she is technically not part of our “team” anymore. She has become more than part of our team now; she is our friend and is going to make the best doctor someday.

I had a visit from a lady from my boot camp, Cecilia, whom I don’t know very well but I recognized her as soon as I saw her face. When you are sweating your butt off at 5 in the morning you don’t really have time to get to know who you are working out with. It really touched me that she came to see me, even though we hardly know each other. The thoughtfulness of people since we’ve been going though this has been amazing. I’m hoping I’ll get to go back to boot camp at least once a week soon. I’ve got to have a little normalcy in my life or I’ll go insane. There is nothing better for my spirit or soul then sweating my booty off.

Olivia and Jen came to visit so I was able to get out of the room for a bit while Woody stayed with Ronan. I didn’t go home today so I was needing a little break. He couldn’t have come at a more perfect time. We sat in the cafeteria and laughed and talked. It was good to talk about normal things with them.

I am so beyond ready to go home and so is Ronan. We are pretty much going be quarantined in our house and our backyard but that’s ok. We have decided visitors will have to stay at a minimum too; so no more Rock Band Parties for a while;) It will just be so nice to get home and back into a routine. You all know how much I LOVE a routine; even if it’s going to be much different now. The bottom line is we have to do anything and everything to keep Ronan as heathy as possible.

I’m going to try to get some shut eye so I can gather my strength for tomorrow. Our results come back from the MIBG scan. I’m thinking I don’t even want to hear the results….I may just let Woody go in with the doctors. I can’t take more information right now. All that matters is how much this boy is loved and how hard he is going to fight with us to get through this. Sweet dreams to you all and thank you a million times over and over again, for everything.


No eating/drinking makes Ronan a grumpy boy…

I broke down in the playroom today. Ronan wanted to go there this morning so I carried him and off we went. When we got there he didn’t want to play. He just wanted me to hold him. I sat in a chair with him and cradled him in my arms like I used to do with him when he was a newborn. We sat there for about 20 minutes and he just let me hold him while he looked at the dragonflies hanging on the ceiling. Looking at his little face made the tears come pouring out. And once again, the feelings of, I can’t believe this is happening, washed over me. I immediately felt like throwing up. Since this guy was born, he has been my sidekick pretty much 24/7. He goes everywhere with me, we do everything together. He is my best friend. I just don’t understand any of this……I would have never imagined something like this could happen to us.

Ronan has another scan today. Which means no eating or drinking after 10 and that always makes for a grumpy Ronan. We have to wait until 4:00 and he will have to have anesthesia, again. This will be the 7th time that he’s had it since we’ve been here. Poor guy. He is laying beside me watching Star Wars and he’s mad because I won’t go and get him any otter pops. I hate these days and I hope 4:00 gets here really soon. I just want to take my baby home. Tomorrow can’t get here soon enough.