Everett - update ALMOST FIVE

Oh, where to begin. This little man of mine is the most delightful child. I don't even recall the last update, I think it was maybe when he turned four and so much has happened I forget to talk about all his milestones.

Here goes nothin:

Potty - I keep trying. We talk about it, I think he knows what we are talking about. We go potty as a family these days because he is a visual learner but I think he needs to see daddy who is at work, more than he needs to hear mommy and sissy go pee. He holds it when his diaper is off, once for almost four hour and his bladder was FULL! I don't know if he is uncomfortable, if it feels weird, so I'll have to get creative soon. When I'm done teaching, after next week...I have a week before his intensive therapy starts so I hope to make some progress in that time at home. I was so excited to be confined to the house because that is usually the problem for us, we are never home, and potty training is so hard to do when you're on the go all the time. I've been pretty disappointed with our attempts so far but birthday boy is getting underwear so maybe being wet in regular underwear will help! I'll keep you updated. I really don't want my kindergartner going to school in diapers. I know his peers will notice and that it just changes how they perceive him. We will do our best. Trying not to put to much pressure on him or myself.

Eating: Ugh. Eating. This boy! He doesn't want to poke his food. He gets so mad when it doesn't stick. He is getting the coordination but cries when the food falls off and gets so sad and shuts down. So there is a lot of hand over hand action and I help him poke and then he brings it to his mouth. He still needs the most distraction at home, he watches a speech program while he eats at home and he does well with portion, he is a good eater. The therapists say home is always the hardest. He does better in therapy and in school around his peers. I'm nervous about next school year. Everett will be going to a new school, Madeira Beach Fundamental. Clara is 12th on the list and many say they think she'll be in by the start of the year. It's a lottery system. He won it! It's a great school but my dream was to be with my babies, so I have such mixed feelings about not being with them. I'm trying to get in, and will continue to try. Sidetracked. Anyway, he'll be at a big kid lunch table next year and he needs more support with his core and it's hard for him to eat if his feet hang or if he cannot reach the table well if it's too high, his arms get fatigued. There is a lot that goes into feeding for him. I just had his 3HOUR IEP and tried my hardest to make sure he will be set up for success next year knowing all the challenges and changes that will be taking place. The great news is, I know his teacher. She used to teach at Southern Oak where I am now, and she is amazing...so that's why I have a spec of sanity. I don't know who his one on one aide will be, they'll have to hire someone new, it makes me so nervous I'm going to stop thinking about it! He is still limited in the types of foods he can eat. No nuts, candies, dried fruits, chewy things, his jaw doesn't have the strength to eat those foods safely. He chokes regularly on his food, mostly because he tries to smash it and doesn't really chew if he can avoid it. Every time we have a surgery it's like starting from the drawing board with liquids and he has so many surgeries every few years, BIG ones, that we just keep starting from scratch. It's difficult not to get discouraged. When I'm over it, I think of all the poor babies with G tubes, knowing how close we were to that out of the gate and I'm so glad he was able to consume on his own, so that'll continue to be my focus, thankful for what he can do! The foods he eats most and well are: mandarin oranges, yogurt, scrambled eggs, pancakes, pretzels (his fav and he WILL chew for pretzels), pb and j, all soft fruits, he eats a lot of purees, drinks milk, prune juice with water, and apple juice with water, water, almond milk, gram crackers, chocolate chip cookies, dried yogurt bites, medium hamburger but has to follow with a pretzel to clear his mouth. Lots of times with meats, if they are soft and we try them, if we give him a small bite of pretzel he'll chew better and then clear the other food. It seems backwards giving a kid who chokes easy more food but every surgery small bites of pretzels are where we begin, thank goodness he loves pretzels and is willing to chew them because it's the only thing that he'll work for and this will continue to strengthen his chewing until he gets strong enough to try other foods. Our feeding therapist is changing her hours, we just started back at therapy last week. Their schedules are all over the place and I cannot take Clara so I have to go in the evening at 5, which is about our usual time but there's not lots of options then. Our current feeding therapist we have been with since our last one left, so for about a year now, and now we are losing her. I hate when we lose therapists because it takes the next one a while to get in the groove and again, it's like starting over. Maybe the next one we find will be able to help push him to more independent feeding, I'll go with that thought!

PT - well, I have our appointment tomorrow at 9:40 to go over the CT scan results we had done last week. They messed up our follow up time and gave me an appointment on a day Dr. Rodriguez isn't there... :/ So, we've been in limbo and I'm anxious to find out if there is fusion. Once we know this Everett will be in the clear to be a KID!!!!!!!!!!!!! A full blown, roll and tumble, jump and fall kinda kid. It's going to take some time for my protective mama brain to accept that I need to just let him be and his neck (if fused) should be stronger than ours since it's fused AND He has the equipment holding things together still. Time will tell, I'm not going to get the cart ahead of the horse and take it all in stride but he is ready. He wants to jump, skip, and run. He sure tries. He's not there yet and these are things we will be working on in intensive therapy in June which is three weeks long, four hours a day intensive OT/PT. I think we start the fifth, maybe 6th. So, I'm eager to get him going again with movement and strength because it hasn't been allowed to be our focus for a while now with his neck situation. It's been about a year, which honestly went so fast but I need to retrain my brain in order to learn to let him go, be, tumble and get back up without gasping in fear. We will continue to see Miss Michelle who has been our saving grace. She is the one that took an entire day off and went into his surgery with him. She is pregnant, with TWINS! We are so excited for her, this is our second PT having twins. So, he'll likely take a break after his intensive therapy and I'll hope that we'll just start back up with Michelle after she comes back from maternity leave....she better come back! We cannot lose her!

OT - Everett's fine motor skills are not our favorite to work on. He gets very frustrated because he knows the task he is supposed to complete and just cannot. Scissors, beads, writing, poking food, sensory issues...the list goes on. He needs lots of support with fine motor. OT also covers a lot of self care and he is doing better getting his clothes on and off, he needs minimal assistance, if he's in the mood to do the work. I got him some sock and undies that have loops so he can get his little fingers in the loops and it really helps. He is willing to put a toothbrush in his mouth on his own, which is huge, and is so cute and silly brushing and attempting to spit. He wants a sucker, but when we give it to him he won't put it in his mouth, I've convinced him to stick his tongue out and lick it, but then he says "mama" and wants me to have it. He works on his core and his upper body strength and coordination. He can write an E, T, L, H, X, Y, D and attempts a lot more, he is practicing drawing a face with a body and all the parts, when his sissy does it with him he is very willing and does well!

Language (speech) - speech is feeding and language, two different therapist clearly working on very different goals. Everett's speech has EXPLODED since we've been home during this pandemic. He is stringing two and three words together and he is very willing to repeat. You can tell it's the planning involved in his brain that slows him down. He talks WAY too fast and I know I miss a lot of what he is saying. He spoke in a complete sentence during feeding on Monday out of nowhere and she heard it before I did and when she repeated him, I could tell what he said. It must be so frustrating to express yourself all day long and I feel like I pick up on 30 percent of it. He has been singing up a storm, "Take me out to the ball game", "Three blind mice" and "Hickory dickory dock" are his current favorites. He tries SO hard to keep up with the words when I sing, even when I go nice and slow, I could tell he was having trouble remembering what word came next so I wrote them all down. Since he can read, it was perfect, he could keep up with me now problem, I still sing it slowly but when he can read the words and he doesn't have to think about what comes next he has no trouble stringing the words together. I can see it all up in his brain and he thinks fast and he cannot move his mouth fast enough to keep up. One of the best is his manners, he is constantly saying please and thank you. Every time I hand him something he says, "think you" and he is so used to repeating what I say he also says "welcome" to himself.  He is requesting so much, telling us when he is thirsty, or bringing things to us to play or fix or read. He talks about swimming, going outside, to the beach, we have little conversations all day long and Clara and he gab it up all day, it's so fun to hear and watch. She is his little hen teacher and he loves it just as much as she does. Week two of being home he said, "I love you mommy" - the most magical feeling in the world. He is saying "want" all the time, most of the time he is able to tell us what he wants. He tries to tell Alexa to play "Elmo Slide" - his favorite song. His two favorite words right now are "cute" and "silly" - everything is cute and silly. He'll say, "silly cat" or "cute baby" and he'll walk up to his sissy and pat her on her am so sweet and soft and say, "cute".  We are working really hard on girl, boy, pronouns and prepositions. He has mastered labeling nouns and he knows his verbs. He is working on following two step directions. This child works so hard every single day to do what we all take for granted and he is my hero and my inspiration. I can't wait until he is able to tell me what hurts and how his day was, I can see it coming and I'm so thankful we are on this path that I hope leads to great success. I feel so terrible for non-verbal kids and families. It's so hard not knowing what's going on with your babies although we can read our children so well, it's just not the same. We are back at speech and all our therapies and everyone is making comments about his speech after not seeing him for two months, it's music to my ears!

Loves: Everett is so easy going, he loves pretty much anything, other than mommy working with him. He is still into Elmo and Bubble Guppies, he still likes books but wants to be more active rather than sit and read. He used to sit and read for hours and it was his preference and now he wants to be on the go more and it's harder to get him to sit and read. Clara has a handheld game that is his reward for reading to me each night. He will read me three books and then get "game" which is educational and helps him with tracing diagonal lines which is a goal for OT right now. It's my favorite thing on the planet when something he wants is something he is needing practice in. He loves swimming and the beach, playing in the sand, swinging, playing with his toys which he will do all day long while mommy is stuck behind a computer and not need a thing from me! It's good and bad. He has always been able to play by himself all day and need no attention at all which really helps a mom working from home. Sissy is is all time favorite love and I think always will be, it makes me so happy! He loves building with blocks and magnets, doing puzzles, and all of his "beat bo" toys that light up and count and play music, he LOVES dress up and looking and talking to himself in the mirror after dressing up in play clothes or daddy's undies, he'll put anything on. He is singing on his "microphony" he calls it, in front of the mirror. He actually likes wearing masks at therapy, which has been good! I don't know if he loves going to school, sometimes he fights walking into the building but overall he just went with it. He loves going for car rides and watching his shows. I can tell he misses being in the car since we lived in it. When we go outside to swing or walk or bike, he says, "car, ride, show" and walks to the car and tries to get in and is mad when I tell him we're not going for a walk. Our car rides all over is when he learns to read from his educational videos so I've been trying to implement exposure to new words at home as much as I can knowing he isn't in front of them like he usually is each day. I'm at the point where I'm maxed out with his words and he needs harder words but I can't find any online. I'm going to have to start making my own videos somehow! He loves going to Mr. Michael and Miss Doe's house when I have to go to work, the kids are always so happy going there and I'm so thankful for them and their willingness to watch the kids. He loves a handheld video game that is Clara's that she shares with him.

Hates: water over his head when I have to rinse his hair, help when he cannot do something on his own, self feeding, nap time (for a second), his "once over" when we brush his teeth, getting his hair cut or styled, having a diaper changed, being told to get dressed, cutting with scissors, tracing or doing any type of therapy with mommy

Mastered: he is a READER people. It's amazing. He doesn't love to sit and read books like he used to so we have to motivate him but it's not hard. He watches these educational videos and must be such a visual learner that he memorizes the words and so far he hangs onto them no problem. I keep moving up levels in books and it's amazing how quick he picks up on new words. I can finally let him walk alone without holding his hand. It feels weird and I miss his little hand in mine all the time but he loves to be Mr. Independent. He can go down the steps outside our house that lead to the car on his own. A flight of stairs he can do hanging onto the rail but I wouldn't want him to do it alone. He tries so hard to jump and is getting close to getting a little air. He willingly picks up a loaded utensil of food and puts it in his mouth, sometimes needing reminders and distraction. He is drawing letters and a basic human head and body parts. He's known his colors and shapes and numbers for so long, we're now working past 20. He knows all his letter sound and we are trying to master both the short and long vowel sound. He is learning to count objects carefully, he goes too fast and if it's bigger than 7 or so he misses items or counts them twice. I'm trying to get him to SLOW down with everything. He tries so hard to run after his sissy and it's much faster than his walk but not a real running pattern yet. He rides an adaptive bike and has yet to keep his feet on the pedals of a regular tricycle. The strength is there but the coordination is not. I'm hoping to get him more practice with an open cup this summer outside where constant spills are okay. He jumps in the pool and swims with assistance but is very hesitant to put his own head in and doesn't have the strength to keep himself completely afloat yet.

Procedures/Appointments: While Everett was four he had multiple x-rays and CT scans to help resolve his cervical instability. He had a spinal fusion and his ear tubes removed since they were creating holes in his canals. He had an ABR which told us his inner ear was working. Multiple eye exams with dilation to figure out his vision, two different eye doctors since one wrote his script wrong. Two blood draws to check his thyroid levels and check for leukemia, thankfully all of those have come back in normal range always. I cannot even count the amount of therapy sessions! Two hearing tests which he failed, hence the ABR which he was put under to get results. A spinal fusion. Two fittings for his orthodics. We saw the dr for two respiratory infections and a sinus infection. I don't remember if he got any immunizations but he had the flu shot and was swabbed for the flu two times and strep once.

Everett is the sweetest little almost five year old I have ever known. He is so content with each day. HE wakes up happy and goes to bed happy. There'll be moods in between but for the most part his days are full of smiles and purposeful laughter. I have loved quarantine because of all the extra time I get with my kids. I also love quarantine because it allows us to just "be". I'm not constantly working on something that a therapist or teacher is reminding me he cannot do. I know it's their job and believe me, I love them for it and I'm always ready to work super hard with him to help him become successful in every way. But, being at home with no therapy and no assessments it allowed us to just be, I didn't have to think about everything he wasn't doing and I let go quite a bit because I had no choice trying to work from home and keep up with it all, so I didn't keep up with it all. Although deep down it ate me up letting him play all day (for weeks on end) with not enough direction and practice I had to and he is really good at it. I love living in a bubble where were he is at is a fine place to be and I'm not constantly reminded about how far behind he is. It makes me want to live in a beautiful cabin in the woods away from societies rules and live by our rules. I do my best to find a happy medium but it's hard when we do so much therapy to not be constantly reminded how much farther we need to go and his list is like my teacher list at work, it never ends. Most of the time I take it all in stride, one day at a time, accomplishing what we can. And other days, like evaluation days, which happen a lot when you have four different therapies that assess and evaluation quarterly, what he needs is screaming in my face and I feel like there aren't enough hours in the day to accomplish all the tasks we need to work on. I'm so thankful he is so hard working and willing to work so well with any therapist that comes our way. He is driven and wants so badly to do all the things sissy does so easily and we all remind him he will. It breaks my heart when I see him crumble with frustration at the easiest of tasks. He inspires me and motivates me on a daily basis.

I'm so lucky to call this little boy mine! He is a constant ray of sunshine and each day brings me hope and teaches me patience and persistence. In five short years I've learned more from him than I think I'll ever be able to teach him in his lifetime. I cannot even imagine when he is speaking to me in full sentences and telling me about his day at school. I want to freeze my life with them at these ages but I'm so excited for what's to come. Watching Everett learn new things and crush milestones (months/years late or not) is the most rewarding feeling I'll ever have as a mother. I've been told by professionals, "He'll never..." a few times so far and they are so ignorant. I'm almost thankful for their ignorance because it pushes me to push him to do things typical kids with Down syndrome may not do, F*in watch him people. I don't usually use language on the blog but I can't help but be honest and share that those are the choice words that will come to my head while smiling politely to someone who doesn't believe he can do anything and everything. I don't argue with them, maybe they're right...but maybe there're not and if anyone can break DS stereotypes, it's Everett. So, watch out world, he is going to do brilliant things and amaze us all...like he already does!

Happy birthday, sweet boy. I couldn't love you more if I tried!

This is too long to edit, so I'm not going to...hopefully it makes sense.