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. 💜

Long Distance Bonds

I just feel the need to document this. I won't go into details but being able to talk with my brother for a full hour was so good for my soul. I wish I lived closer to my siblings but being able to still have these bonds to lean on is everything.

Sunbeams!

My last two to become sunbeams! I've also been looking forward to this milestone for a couple years now because I realized that their first year in primary would be Addie's last year in primary. It feels surreal to have all five of my kids in there together. This year's primary program is going to be my favorite yet. 😍

And right after I just typed this last sentence I realized that I will be watching the program from the stand because I just got called to be the sunbeams teacher, which is okay. I actually love being with them at church. I wouldn't even mind if I can just follow my last babies every year haha. I'm not sure how much they would love that but for right now they really like it because they're not too sure about being in big kid primary. When Danny asked the girls how they liked being sunbeams Quinn pointed out how they didn't have any toys to play with haha. It's always a tough transition but I'm excited to help them out.

Danny happened to pass by while I was taking some pictures of Quinn and joined her. 

She was pretty happy about that. She's a big time daddy's girl.

Rylee's current 'cheese' face with her head tilted back and eyes closed cracks me up every time.

Another Birthday in Heaven

 Happy Heavenly Birthday C!

Does heaven celebrate birthdays? 

Or would they rather celebrate the day they got to heaven? 

I hope they celebrate both.

Tonsillectomy & Adenoidectomy

It's a big day for this brave boy. Hudson got his tonsils and adenoids taken out this morning, and is now at home. He's doing pretty good so far and hopefully we'll be able to manage his pain well. We got to the hospital before 9am this morning and got home sometime before 2pm. Overall, I think things went pretty well. We'll see how tonight goes.

Excited to get these things out.

And nervous as well.

I love this boy. 💙

A child specialist came and talked to him about what he could expect from the day.

Feeling so sad I couldn't follow him until he was at least put to sleep. He was so brave.

The surgery went by so fast. They said to expect it to be close to an hour but the doctor was done and talking with me after twenty minutes of surgery. I honestly don't know if that's a good thing or a bad thing. Personally I feel like maybe more time should have been spent doing this but when I asked a nurse about it he told me that Dr. Hart is exceptionally good at this and I repeat "Dr. Hart is notoriously known for getting it done quick and fast and is exceptional at it." I've never heard the word notoriously be used in a good way so I googled it (later when I wasn't in front of the nurse) and it shows the definition as famous or well known. Although typically it is used with a negative reputation it can be used in a good way as well. I'm still not sure how I feel about it though. The nurse could tell I wasn't sure how to feel (and again this was before I googled it haha) and he added that if it were him he'd much rather have it done quick than slow. So I guess we'll just have to see how his recovery goes. He has a post-op appointment with Dr. Hart exactly one month from today. I'm hoping it goes well. When he woke up he was definitely hurting, which was expected. It was the coughing that he was doing which was so sad because it hurt each time he coughed but since he had tubes down his throat and it was swollen from surgery he felt like he had to keep coughing and thus the cycle. He did really well considering what he was going through though. Everyone was pleased to see that he was accepting juice and popsicles. The checklist of things they want to see before he leaves the hospital is basically if he can eat an entire popsicle. Hudson ate two before we left, so he did great. We spent a couple hours there before leaving because his pain was pretty high so they finally gave him some Oxycodone and that ended up being the magic drug for him. It worked, his pain levels came down and we were able to leave and continue his recovery at home. They said to expect up to 14 days of mild to severe pain and that kids typically recover faster than adults. I hope this all goes well. I do want to say that his nurses were amazing. They were so nice and kind to us. When Hudson woke up we found that a nurse had dressed up his three stuffies in hospital gear. His main nurse even let Hudson keep his koala hospital gown when he was supposed to return it because she thought he was so cute. The nurse that I was asking my questions to about the time length of his surgery was also great and was telling me how much Hudson looks like Charlie from The Santa Clause movie. I've never heard that comparison before but they're both really cute kids so I'll take it. Even Dr. Hart was super nice whenever we talked and I should just put all my trust and faith in him through this journey.

Poor boy was in so much pain when he woke up.

His favorite movie happened to be on. 

That provided a nice distraction as he was recovering in the recovery room.

The rest of the family all wanted to say hi to him.

Pictured below is Rylee and Daddy.

A little before picture for memories' sake. His tonsils were so big they basically touched his uvula.

Grant's tonsils for comparison.