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Apr 28-May 04

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Wyatt warriors, what a month it has been! 

Wyatt has kept us on our toes as usual. But we have enjoyed this last month so so much as much as he had us working for it. 

Wyatt has been sick, unsure of illnesses vs allergies, but sick with congestion, nasal drainage, vomiting, fevers and lung congestion. He has needed more oxygen this last month than he has needed last year all together. It’s taken around the clock nebulizer treatments, inhalers, suctioning, fluids… pulling out all of the tricks to keep this kiddo home. But with all of that, we have pushed the limits with him still getting to live his life and enjoy daycare (when not feverish or needing oxygen of course) and many fun family events! 

Last month; We were able to get together with our cousins and play! We also got together with our hunting family and Wyatt was able to play with, snuggle with and feed baby bottle calfs. He also was super impressed with the barn cat situation and torched them by carrying them all over the place!  Such an adventure and so many fun memories made. 

Wyatt got to play with our pals across the road at the cabin and got to go sledding with the kiddos! He had so much fun playing, and had finally gotten to enjoy a good snow that we all have been longing for, even if it wasn’t December anymore. 

Wyatt had his first successful dentist appointment! We brought in his toy dentist set and cleaned the play teeth first, then, with some coaxing and snuggles, he was able to get his teeth cleaned! The hygienist was absolutely amazing in working fast and being mindful of his complexities. Any time toothpaste would land on his tongue she was so quick to get it off. Being Wyatt aspirates and then with the combined sensitivities with anything in his mouth, he wasn’t able to do a standard rinse like most kids and adults get so it was an experience for all. He was so proud of himself and got to pick out a prize and toothbrush. The whole dentist office celebrated his success with him which helped so much! This was his second visit, the first visit we did more of a tour and showed him all of the pieces and tools and did more looking in his mouth vs touching. To be honest, my hope for a ‘typical’ dentist was very slim and I was sure he would need sedation. This was such a win! 

Wyatt had his first seating evaluation for his wheelchair, but because there was an issue with the order, the appointment was labeled incorrectly and we went and had to cancel due to not getting the entire team needed. We will get the right appointment made in the future. 

Wyatt had his ENT appointment and we discussed how things have been going. Wyatt is ultimately eating more by mouth, but is drinking much less again. He requires 100% of his fluids in his G tube. We do a lot of practice with mild thick and thin liquids and he enjoys it, but needs a lot of reminders and direction on slowing down. If we would allow him to be independent with a cup, he would pour, forget to breathe, and get gulpy, vomit or cough a lot. We will continue to his mild-moderate thick liquids in his straw cup and continue to practice. His ENT doctor was very happy with his eating and reassured us that drinking is a very slow process. It’s also very reassuring that Wyatt isn’t getting pneumonia. We discussed that even when healthy, every time he goes to his pediatrician or urgent care that his throat is red and he always gets swabbed for strep, the doctor said that can happen in kids that are frequent pukers or have swallowing issues and he said we can decline the strep test if he isn’t symptomatic. We will continue to see ENT frequently. 

Wyatt started Special Olympics Young Athletes and has so much fun! He loves to play with the kids and it’s such a great community for us to be involved with as well!  So far his favorite things are playing with the parachute, throwing balls and jumping… which he has just been successful with this week! The coaches have worked on him bouncing balls and we have seen him try and practice more of that which is fun! 

Wyatt started swimming lessons and LOVES it! He asks to go to swimming lessons every single day. He is in private lessons with just him and a teacher. He has been working hard on blowing in the water to try and train him to blow instead of inhale when he goes under… this is a sloowwww process but when prompted he blows great! He also has a lot less control of his body and balance in the water that they are working on improving. His teacher mentioned being so impressed that he has the movement to do it, but needs the understanding and strength to utilize his body movement. He also becomes fearful when he is in deeper water with a life jacket. Being he is so heavy we are working on the life jacket more, but he would much prefer arm floater style of life jacket but he is such a big boy. 

And being the big boy he is, we are going to start his oral challenge soon! Next week we have labs to check where his baseline is, then we will remove one formula and see if he can maintain. We have a dietician who has been amazing. We are looking at starting some supplements to help as Wyatt’s diet is fairly narrow and is missing a few food groups, but very thankful he has shown us how much he can do on his own! We will keep one morning feeding as it is a small amount and mainly prunes, without this he struggles to have a bowel movement, and he needs to go to the bathroom to be able to eat and keep food in! 

Easter was fabulous! We got to spend time with family and friends and just be present together. And now we have a new baby cousin to enjoy as well… and we all know Wyatt loves babies! What a beautiful way to start Spring! 

Hoping for better health this season and successful maintaining without formula! 

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