Monday, October 30, 2017

πŸŽ’BackpackπŸŽ’Growing up there wasn't much talk about disabilities and I never heard the word "autism" until probably after college and then some. It likely wasn't until I was fully immersed in this world that I could look back at kids I went to school with that I just knew as "different" and now be able to understand them more. There was one boy in my grade in particular that made an impression on me and has some similarities to Mason that now just makes me smile. One time in middle school I saw from afar some kids picking on him at lunchtime and squirting condiment packets all over him and his backpack. I couldn't believe what I was seeing and went running from where I was to help him. The kids teasing him ran off when they saw me coming and I was met with an innocent bewildered expression on the boy's face that pierced my very soul. How could anyone do that to someone?!! I talked to him and took his backpack into the bathroom to clean it off and handed it back to him. I don't think he said much to me and just walked away (which he didn't have to--I knew he was glad I was on his side). ❤️ Now having a son that could be potentially be caught up in a similar situation--I cringe at the thought. Every parent hopes that will never happen to their child! We have been fortunate for understanding, loving, kind, patient people that have advocated for Mason and treated him like a buddy. I could ask for no greater gift! Thank you wonderful people who love my son just as he is and embrace him fully! My hope is that everyone will look outside themselves and include the person with no friends, who looks different, who doesn't speak all that well, etc. The world could use a little more love! There are no limits on how much our hearts can give! ❤️ #autism #ohmason


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Tuesday, August 15, 2017

Now that's the Mason I know! The surgical team walked in while he was wearing these and he wouldn't take them off. Some of the team came back later when we were telling jokes. The team asked Mason if he knew any jokes and he said without missing a beat "What do you call a camel with 3 humps?" They asked "What?" And he couldn't remember the answer πŸ˜‹. We discovered later it was from Zootopia and the answer is "pregnant." πŸ˜‚. After he tossed his cookies he was feeling much better and wanted to go on the outdoor patio. He was waving the non-iv hand and doing the ghetto-neck movement to "Just Dance" and "Watch me Whip" to name a few. It's nice to have him feeling a little more like himself. Poor kid can't eat but that doesn't stop him from dancing!πŸ•ΊπŸΌ#ohmason


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We got Mason up walking today a few times and then let him snag a wheelchair when he got tired. He was not up for the playroom but did sit and play a minute at the piano. He threw up last night and didn't want to eat anything all day until later tonight. Annnnnd that came up, too. The doc said it's a sign that his bowels aren't working yet and it's a waiting game until they kick it in gear. He has a lot working against him, so this just means more time at the hospital. He is off oxygen ish--just needs it here and there when he sleeps. He is maybe in slightly less pain, but now down to Tylenol through his IV (which he is still on 24 hours daily). We told the doc he won't take anything orally (he gags before it even touches his lips) so they are worried about how his pain will be managed going forward. Basically, given our options, he will just have live with the pain and we just pray it won't last too long! We will see what tomorrow brings. 🎹 #ohmason


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Sunday, August 13, 2017

This captures my relationship with Mason. I have been with him at 99.9% of his doctors visits, hospital stays, therapies , etc. The .1% is when his Dad comes to my relief. I don't like to leave him (especially when he's in the hospital) because I just couldn't bear not being there if something happened to go south. I know him well and, given our history, I am slightly paranoid and so I make sure any sign of respiratory distress or pain is addressed to immediately (mostly to ease my mind). There have been times when my paranoia (or is it "mothers intuition"?) has paid off so I probably won't quit anytime soon. 😊 I guess what I'm trying to say is that I love this child to the core and I know without a doubt the Lord is with him--with us. Some people bond with their kids over sports or other activities; our bond was solidified in the doctor's office. It's our "thing." Hey, I'll take it. #blessed #ohmason


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I can only attribute his rally today to the many people who have expressed love and sent prayers our way. They finally got a handle on his pain and he perked up towards the end of the day (since he was catching up on sleep he lost last night). He even cracked a smile and said a few words! He walked twice and wanted to hang out in the Ronald McDonald room at the hospital that overlooks the city. FYI-the Room contains a few private rooms where tired parents can take quiet naps, washer and dryer, a living room-type area, computers, and a stocked fridge and kitchen free to the parents. Most days at 6pm people sponsor a dinner and anyone can come eat for free. These amenities help offset the cost of eating out every meal, give a place for families (like mine) to spend time outside the stuffy hospital room. If you are ever looking for somewhere to donate to--that's a good option. Anyway, back to Mason. He is now off the morphine drip (but can have it if he needs it), on a plan of Tylenol and Ibuprofen (toradol) and best of all--his bowels are showing signs of working again!! πŸ™ŒπŸ» We are so thankful. #ohmason


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We took Mason up on the skywalk to get a new view for a minute. The kids were good little helpers and loved pushing him and getting tangled up in all the cords hooked to him. #ohmason


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You know you are a hospital family when your kids are excited to go visit. "Yay! They have toys there! Can we play in the playroom? Can we eat in the cafeteria?! Is it my turn to watch cartoons?!" 😊 Mason's pain was managed pretty well during the day yesterday but man, the nights have been brutal. Lots of pain and last night not a lot of sleeping for either of us. He was throwing up and just really struggling. He was sweaty (we think because of the pain), and his belly is quite distended. All this is likely just part of the healing process. I feel kind of silly sometimes documenting the details but for some reason I feel like it's important to share. I also know that within a week's time or so all this will be behind us and it will just be a blur. The body is an amazing thing! #ohmason


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Saturday, August 12, 2017

πŸ’•Feeling the LOVEπŸ’• These are the fun messages people have sent Mason so far! Makes our hearts happy! Thank you so much! If you still want to send them, go to the link in his profile. You guys are the bestπŸ’•


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It was a rough night last night. His BP, Pulse Rate were sky high and his oxygen sats kept dropping. He isn't taking very deep breaths because of the pain he is in. He's been sleepy and lightly moaning in his sleepπŸ˜”. They are working on getting him different meds that are more effective and don't make him so tired. We got up and walked today and we had to get a wheelchair to take him back to the room because he just couldn't take one more step. But! He is in good care and we are just taking baby steps to get him healthy. #ohmason


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I tried to do a Facebook/Instagram Live concert but the connection was spotty so it was a little shaky (and it was my first time doing it) but I wanted to share the moment with everyone. To rest in between Mason's walk, we stopped at the piano. His dad played and played and Mason was sleepy but didn't want him to stop! His cute little finger was tapping to the music and loving every second. It was magicalπŸ’•! He loves music so much he even yelled out in his sleep (after not saying anything all day) "Alex Boye!!!!!!"πŸ˜‚ Huge Fan! @alexboye4 #alexboye We kept him out a little too long because when he got back to the room his Oxygen Sats were ⬇️ (next time we will take the oxygen with us). #worthit


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Friday, August 11, 2017

🌟3 Nephi 17:23 "And he spake unto the multitude, and said unto them: Behold your little ones! 24 And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; and they came down and encircled those little ones about, and they were encircled about with fire; and the angels did minister unto them." Prayers and angels are real! Mason's doctor gave him the goal of "sitting in a chair" today and he walked clear down the hall and back! Awesome! This pic makes it look like Spider-Man is telling Mason to go to Jesus...and I I kind of love it. πŸ’«


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This pic is obviously not from this hospital stay but they all start looking the same after awhile so I wanted to break it up. Mason is now on some oxygen because anesthesia and pain meds somehow make his oxygen saturation numbers go down. This isn't unusual for him so we know it's a waiting game and they will be back up soon enough. He's been good about telling us if he's hurting this time around. Normally, his pain tolerance is so high that we don't know he's hurting --usually we just guess by watching his pulse rate. This morning he whispered "mom...stomach huuuurts" so we knew to get him some relief. Hopefully this communication continues. It's hard to watch your baby hurt or in his case, suffer in silence.


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Thursday, August 10, 2017

The aftermath. They did an incision below his belly button and a few small incisions on the sides if his abdomen. The tube is placed in his belly button to keep the hole open where we do nightly flushes and run a fluid solution through to clean him out. It was from his previous operation, an appendicostomy, where they attached his appendix to his belly button to work as a tunnel to his large colon. It's basically an enema from the top. Fluid goes in and comes out...below. For the past 2 1/2 years he has had to sit in the bathroom for at least 45 minutes a day. We were hoping to eliminate (or at least shorten the amount of times we had to do them a week) with today's operation but it's looking like we will still have to do them given his history. The good news is they should be more effective. πŸ‘πŸ»


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Mason is currently still in surgery (3 hours and counting). I found out he can get special delivered messages from people delivered to his room. I'd like to have some to hang on his wall to make his stay here happy. Here's the link but I will also put it in his profile, too. Thanks for all the love and support!!😘 #ohmason http://ift.tt/2vrrOCP


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Ready for surgery! #ohmason


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I got to ride on his bed with him to the surgery room. He doesn't like to talk much while in the hospital, but all of a sudden he cried out with a tear in his eye, "Mom! I want you to come with me to the surgery room!" πŸ’” We got to take him to the operation room door and by then he was already somewhat sedated. We will be there when he wakes up so maybe he will think we got to stay the whole time. :) #ohmason


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Monday, July 24, 2017

Nothin' better than the beach! 🐳 #ohmason


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Wednesday, July 12, 2017