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ThorenStrong

Hi,I'm Thoren.I am 4 years old,I have Down Syndrome & Acute Lymphoblastic Leukemia.

05/31/2026

Mom caught me with my tablet in my bed. She said they did a lot of work outside today trying to get the backyard ready for me. I didn't go out today because the UV was a little too strong to mix with my medicine. Mom and Big Sissy are sunburnt and now they are freezing. I have an appointment in Columbia tomorrow for a special liver scan. I have been told it's already my bedtime because the rocket ship is pulling out at 5am. We will discuss the results from my test tomorrow on the 8th when I have my long day at Hopkins. I sure hope Mr. Liver and Mr. Spleen have improved since the last test🤞🙏. I hope you all enjoyed your Sunday- Love, Thoren

05/30/2026

Hey besties.....got my license back just in time for summer 😍 if you see me out cruising wave as ya drive by......might be in my yard, possibly venture over to uncle larry's. Mom said thats as far as I can go but what Mom doesn't know won't hurt her 🤣. Today is so nice we have all the windows open in the house and we are gonna cook dinner on the blackstone. Mom said I can't have the hot dog but I can try some burger and pasta salad. Thought I would pop on and show ya I've got the car all ready for lots of fun! Love, Thoren

05/28/2026

Hey besties it's Thursday! I am having my daily bedtime convo with the fishes in the aquarium, telling the unicorns in the cabinet goodnight and wondering why my trees are not lit up🤔Mom said some crazy stuff like " it's not Christmas" but those rules don't apply to me so I am going to need my forest illuminated even when the humidity is at 98%. Anyways TGIF tomorrow right??? That means sissy(Hadley) has a dance..and Mom and I will get to hang out for an extra long time tomorrow night. I hope you all are glad to see Mr. Sun shining again because I just love it when he is out. It's almost my bedtime so I thought I would pop on just to share a smile. Love, Thoren

05/27/2026

It's Wednesday and Mom has gone down a rabbit hole.....
Today was super fun in class we had some visitors that brought in some of their pets. ( Mom got the heeby jeebies) I liked touching their different skins.
Anyway last night we watched an amazing documentary on Youtube called "Saving Grey". This is what triggered Mom to do a whole bunch of research. I hope my teams are ready because she has lots to ask them about leucovorin, milk thistle and liposomal gluthahione. Why? Well here is some interesting things:
I have the MTHFR gene mutation which means in order to absorb vitamin B i need a methylated version of the vitamins. Fun fact leucovorin is a form of folinic acid that helps the body process gluthahione. People with down syndrome have low levels of gluthahione and people with autism sometimes have low levels of......folate( folinic acid). By giving them leucovorin it unlocks the ability to process folate and helps with speech. Gluthaione helps to unlock cognitive function. Can you imagine if these 2 simple things could help me form the ability to talk???
Milk thistle cleans the liver and mine is angry and probably needs a good bath 🤣. Mom is still doing research but I sure hope these doctors have an open mind when she presents her case. I have so much I want to say and it just won't come out! I hope your mid-week is becoming as interesting as mine. Love ya lots- Thoren

05/26/2026

In the kitchen making Aunt Elsie's oven mashed potatoes with sissy. We already made the meatloaf( Aunt Kay's recipe) and put that in to cook. I am so excited that I had to come supervise and bring my Peppa blankie. I wasn't in a great mood this morning before school but I am full toddler right now according to Mom.
Update from Hopkins: the dumb insurance company hasn't approved the liquid thyroid medicine I need. They think I can't absorb gluten so Levothyroxine isn't really getting into my system. I THINK INSURANCE COMPANIES ARE A SCAM!!! So if you can please cross your fingers that they get it approved soon🤞

05/25/2026

Isn't this cute? Chat gpt is sure fun to play around with

05/24/2026

Good morning Thoren Squad....it's Sunday that means I get to spend the day with Mommy. I have been such a good boy today, I even slept through the night last night. Mom and sissy are working on my make a wish trip scrapbook so I can have all my memories in one book. We took loads of pictures ( over 1600) from the trip so Mom said she is gonna pick the best ones and file the rest for later. I hope everyone is enjoying their weekend! Love, Thoren

05/23/2026

Hey besties it's Friday! Guess what Miss Bobbi my wonderful para found some special adapters for feeding pouches and I can eat using them like a big boy. Sissy said I barely make any mess and I have eaten 4 pouches in the last 24hrs. I had a rough night last night getting comfy to rest but today has been much better. I got my IVIG injection last night after my bath and I am excited that Mom will be home to snuggle after work tomorrow and on Sunday. It's my bedtime but I wanted to pop on and say hi to all my squad. Love you all to the moon and back - Thoren

12/16/2025

Hey squad sorry for the scare. I do in fact have a failed port so I need to have it removed. Mom is waiting on a call from peds surgery so we can figure out when they can fit me in the schedule. Dr. F said no more pentamindine but I have to go to an immunologist to see how I am going to get weekly ivig. I also have to go back up and see my liver team because it was angry again today when I got examined. Im really ready for all this to be over so I can be free as a bird and not have to go to Hopkins every time I get a fever. Thanks for all the prayers and good vibes we will keep you posted as we get dates for all the things. Love, Thoren

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Madison, MD
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