FaceTime with Caide

I was able to FaceTime Caide and his caregiver Olivia today. It was what my soul needed. I was able to talk one on one with Olivia as well for a moment and I asked her a question I've always wondered about regarding the disease that Caide and my sister had. I asked if Caide was aware he has the disease. She thought about it for a minute and then told me that she really doesn't believe that he knows he has it or what he's about to go through because of HDL2. That brings me some relief because I've always feared that my sister was scared of the changes her body and mind were going through. She did tell me that she remembers Camila always being scared for her kids, especially Caide. She told me that she would always bring her pictures of her kids and try to talk about them. It's surreal that Caide used to be someone she knew from pictures to now someone she works with six days out of the week. Olivia says that Caide is very loved and very spoiled. Maybe it's because he's the youngest patient they have but she mentioned several times how much the staff all love him. Caide is very attached to Olivia in particular and just follows her around, wanting to help in any and every way he can. He seems to be doing well but she did say that he is detereoating very quickly. He's losing a lot of muscle and weight. He needs help with everything. She helps him put on his clothes, shower, cut up his food and open all the things for him. I remember right after my sister's viewing I took him to Chick'Fil'A where I had to help him open up the sauce packet because he couldn't do it back then. That's when I knew he had the disease as well. He mostly just says one letter sentences. During our conversation today he really only said yes and no but he did once say 'horse', 'cute' and 'cool' and at the end when we were about to hang up he told me "love you". Olivia encouraged him to say more words in that sentence so then he said "I love you." It was a special moment. I love this kid so much. I'm glad I was able to have this virtual visit and that my kids also joined in and they were showing each other stuffed animals that they love. Caide showed my kids his babies, tiger, puppies and sloth and my kids showed him their babies, stuffed elephant, unicorns, puppies and lego cars.

Caide I love you bud. I'm so sorry you have this awful disease. I love that you have someone like Olivia to be there by your side through this. I wish it could be me. Maybe one day I'll live close enough to regularly visit you before your time here is done. In the meantime I promise to call and FaceTime more now that we have each other's contact information. Love you.. . . I love you.

Sprained?

Last night was a long night for little Quinnie. Well for everyone really. Addie couldn't go to sleep because she kept getting out of bed for any updates on Quinn. Last night we called everyone to the basement to clean up some legos before doing scriptures and family prayer before bed. Danny's arms were full as he had some legos in his arms when Quinn asked him if she could be carried down the stairs. Since it was already bedtime he picked her up so that we wouldn't prolong bedtime anymore than we had to. He had her in his arms with one of her legs wrapped around his back and the legos tucked in his shirt almost like a little basket. Somehow he lost his footing while going down the stairs and slipped. Quinn was  mostly protected as the majority of her was in front of him but her little leg on his back was under him as they both fell to the bottom of the stairs. It was an accident but Danny felt so bad and immediately knew she was hurt as he got up from the ground. Surprisingly she wasn't screaming or anything and was really quiet but you could tell she was in pain. Especially when we tried to see if she could stand on it and she just fell from the weight on it. We for sure thought it had to have been broken. We put her in some warm sweats and grabbed her blanket and I took her to the ER while Danny put the rest of the kids to bed. 

Quinn did so well at the hospital. She let the nurses and doctor touch her foot and was super stoic the whole time. The nurse was asking her if the places that she was touching hurt and Quinn would say no or not answer at all even though we could tell it did hurt based off her eyes. The nurse even giggled and told her "I can see it's swollen, it's okay to say it hurts". When the doctor asked her to point at a picture of faces depicting a pain scale from happy to crying she pointed to number one which was a super happy face. I think I pictured more crying to happen so part of me was back and forth on if it was broken or not from how she was handling the examination. The doctor said it's really hard to tell with kids because some kids will be completely calm and it is actually broken while others could be hysterical and crying and yet nothing is wrong with them. We took x-rays for reassurance, but it was a long process. Quinn was so brave even though I could tell she was hurting. I had packed the iPad in case it would take a while and I'm glad I did because she was able to watch Bluey while we passed the time. We eventually got the results from the x-rays and it didn't show a break so we're suspecting a sprain. 

When the doctor asked her if she could stand on it that's when she cried. She tried to put weight on it again and the same thing happened where she just fell. We're going to keep it wrapped, elevated and iced up but if she still seems to be in pain they want to see her again to make sure that there isn't a small break somewhere. Danny was worried sick the whole time at home and was glad to finally see her again. As soon as we got home Quinn told him "the doctor didn't cut off my foot!". It was like she was so happy and relieved to admit that. Then it hit us that Grant kept saying that before we left for the hospital. He was so scared the doctor was going to cut off her foot and kept asking if that would happen but Danny and I were running around making sure we had everything we needed for the hospital that I'm not sure either of us addressed his concern in the moment. I really think that Quinn was hearing Grant panic about that and that's why she was trying so hard to be stoic at the hospital. If that's true I feel so bad. She could have been so worried if that was the case. It could also explain why she wasn't admitting any pain while we were at the hospital despite everyone knowing she was feeling it.

Thankfully she slept great through the night. She was so exhausted by the time we left. It was close to 11pm by the time she was in her own bed last night and she fell asleep so fast. This morning though she woke up in pain and still can't put any weight on it. We'll have to see how she does the rest of today but if she doesn't improve in the next day or so I guess we'll be taking her back. Here's to a speedy recovery.

Today is going to be a rest day we all need. 💜