Happy 2nd Birthday Everett Lang Feger

Oh, my dear child. I don't know where to begin. If I should start with your amazing accomplishments over the last year or my developments with raising a child with Down syndrome. I'm sure I'll be all over the place, it was a busy year! I'm so proud of all you've done!

I have to say, the older you get, and the more I experience a child so special, the less worry I feel. Everyone who sees you smiles, no one can help it. You're pure joy. Unless you're pissed, since you're two and oh boy, you act like a toddler when things don't go your way. Thankfully it's not often, your typically the gentle soul that came into this world, calm and sweet. Your dedication to everything is insane, I can't think of another word for it. You persevere through large and small tasks, knowing the goal. It is getting more challenging since you do frustrate at times, I've found that I need to back off. I want to help and guide you, but you want to be independent. You're less apt to get frustrated if I'm just watching from afar and stick with the task at hand longer. You are SO smart, you understand everything that I say and all that's going on around you. I can't wait for the day I get to hear that little voice tell me the things running through your mind. You have a few favorite words: fish (shhhh), pizza (Paaahh), pretzel (P over and over), Dada (dada - of course, since forever), bye-bye/bubbles/baby are all (bu-bu), sissy (ssss-sss), you're "counting" you get your chunky fingers up and attempt to count, it's so cute I need to capture it on video. When we ask you to say words you try so hard, you typically get a either the initial sound or the end sound. Some days you just say "Di or Duh" which are your two favorite go-to words, we have full conversations using those "words". You still can't make the "m", it takes a lot of muscle for you to bring your lips together so we're working hard at that. I can't wait to hear you say mama one day. You're signing a ton, they come and go, but here's what I can think of: pizza (your favorite food), cat, dog, mama, dada, up, down, all done, more, help, cracker, drink, eat, again, spin, open, elephant, alligator, me, give me, hat, wash, shoes, socks, gosh there's more but I'm stuck. You either sign or say words, not both. Often instead of signing the animal you'll tell us what it says, your growl for tiger (and it's intense, so intense it appears your eyes might pop out of your blistering red face - you take your growl seriously), you'll "Pppppppp" for horse like the end of its whinny, you'll pant for dog if you don't want to sign it, you sign chicken, cat, book, growl for tiger, bear and lion, but you sometimes sign lion, there's way more that I'm forgetting, but they come and go and you get a kick with some and overuse them. Like lately you're signing "mama/dada" to other people, but I've noticed it's gender specific. So it'll be "mama" if it's a girl you're saying "hi" to, or "dada" if it's a man, you've only done that with adults.

Independence: You're independent when you want to be, like playing with toys. You've mastered a lot of your toys but the ones that are hardest like the shape sorter, you don't want help with. If you'd let me cover a few of the holes you can get it, but you often don't like when I "help" and chuck the shapes to tell me, "stop mama, I'll do it on my own time" and I often catch you working on the things you need to be working on, quite well, by yourself. I'm just so anxious to help you accomplish these milestones but you're happy to do it yourself and I need to let you, and am getting better at letting you be and giving you the time to do things on your own. You're not really close to independent walking. We did get your gait trainer which has a lot of settings to help you, but now that it's yours, you want nothing to do with it...fun being two. You make yourself fall out of it so you don't have to do it. You like to walk to the pool in it, but then you just cry because I don't take you swimming. You're still an independent bottle drinker and are giving us a very hard time transitioning to sippy/straw cup. Speech peeps want you to use a straw cup because it helps build strength in your mouth muscles better than a sippy cup. You're as STUBBORN as they come. You like no foreign objects near or in your mouth, brushing your teeth, straw cups, oral tools to help with strength, forget it, I can barely wipe your face. I think it stems from all the oral garbage that you started your life with, having that tube down your throat for so long and such negative experiences with feeding at the beginning. Others tell me no, that you were too little, but you've always hated things touching your mouth and the older you get the more stubborn you become and I do believe it does have to do with two months of negative experiences from the get-go. Either way, it's making strengthening your mouth and transitioning you to new cups quite challenging. You'll bring a spoon and fork to your mouth but not enough to self feed completely and accurately. I can't put a pile of food on your tray because you'll shove it all in at once, pacing is something we're working on. Or it'll all go on the floor for fun. You help me put on and take off your clothes. You follow my commands if needed, but usually do what's needed on your own. You don't like any maintenance, hair cuts, hair combed, teeth brushed, nails clipped, diaper changed, shoes on, you pretty much fight everything that has to be done to get ready for the day. However, in the midst of fighting me, you'll listen to me when I say "booty up" so I can pull up your pants, and arms in, open your mouth...you just make it known you don't want to. You used to scream every brushing of your teeth, I would have to pin you on the floor with your hands between my legs, (and sometimes still have to) you have mastered the swat and you can prevent pretty much anything from going near or in your mouth. Now, you don't scream bloody murder, you complain and I can hold your hands for the most part. It's the top row of teeth you hate, I can't figure out why, the bottom you're fine with. You're getting into everything, the other day you climbed onto the toy box and stood up, YIKES. So, all eyes on E from now on. You're getting into your toys on your own, opening anything and everything you can, you're doing okay with listening when I tell you not to take things out of cupboards. I really don't want to baby-proof everything, we got lucky with Clara who listened (then ;)). You, well, you could go either way at this point. When you're told "no" you have a melt down, most of the time, there are a few times you just listen and oh boy do I praise you when that happens!

Therapy: we go to a lot of therapy.

PT - Two times a week for one hour for physical therapy. We see Miss Jenny now that she is back from maternity leave and we still also see Miss Cathy who we started seeing when Jenny left for maternity leave. So now we have the best of both worlds, those two are my favorite. They are so good to Clara and Everett both. PT is where Everett is struggling most at this point. I thought once we got his walker he'd be moving a bit faster at the whole walking process. He enjoyed using the one they had twice a week for an hour, but now that we have our own at home and he's resisting, I see how long of a road we still have to get him walking. The main reasons I care are: A. it limits what I can do with he and Clara and I hate holding her back from things, so much is about him it's so hard to make it "fair"/B. apparently language and speech develop so much faster after kids begin walking since their brain isn't focused so much on movement/C. he's heavy, he wants to be down, I want to put him down and there are so many places he's stuck and not happy about it when I can't put him down. We're both trying to be patient, but this is a hard one. It's so funny because other people see him doing the "things" one does to prepare for walking and they'll say to me, "it won't be long now" and what no one understands is...it will!  It will be a very long time from now. Everything takes so extremely long because there's so much that goes into walking and he has to master and feel confident with all of those little things before he can piece them all together. I appreciate everyone's high hopes, but our reality is, slow and steady wins the race. I appreciate when people think he's going to master it like a typical toddler/baby, I used to think that too, but that's just not our reality.

OT - we go once a week for an hour for OT. Right now he has mastered many of his toys like the coin bank, pop up toys where he has to push, slide, flip, and turn to make the toy pop up, etc. Much of OT which I didn't understand for a while is fine motor skills, but it's also sensory, so she's trying to help me with his oral motor issues. We're moving onto coloring and trying to get him to use typical things appropriately. Miss Amanda is our OT, I asked to switch a while back. We had a young, sweet girl who I know cared a lot for Everett but I could tell she didn't know her "stuff". Amanda is so great, she gives me SO much information and loves him (and Clara) so much. She is always so positive, it's almost deceiving. She had to do a re-evaluation a few weeks ago, and he bombed it. That's when reality sets in for me and those days are rough. We work so hard, day in and day out and then she does this "test" and he did so poor, it just shows how much farther we have to go. I know as a teacher what "tests" measure, it's such a glimpse. He is doing so well, and I could feel her trying so hard to take the pressure off as she was doing it knowing how we all must feel knowing how hard we work. Clara was cheering him on so hard that day too, it was so cute and bright in the silver lining I needed. The good news is, it proves how much he needs OT and we'll definitely get approval through insurance. There may be a fight for insurance coming in our near future and I'm petrified. I don't know what I would do without all of these people and all of their support. It's so scary the thought of not having all we do now. Anyway, the amount of OT toys we have in our home is ridiculous. I justify it all since they help Clara too. She isn't very into art, so getting her to write, draw, color, or paint is an issue and her fine motor skills are lacking for sure. So, we do those as a family. Amanda always tells me how to help her too, I feel so loved by our therapists. It's never a depressing place to go, we always look forward to seeing these helpful faces who love my babies so much. We practically live there so it feels like home.

Speech Language - we go once a week for 30 min. (Soon I hope to get these services at home for an hour.) Everett signs as mentioned above, he is picking up on new signs all the time and then drops other ones. Not the vital ones, but animals and such. No one has been able to tell me why this happens, and I haven't had time to research for myself. If he can sign it he will, or he'll say it instead and/or make the noise it makes if it's an animal. He is almost annoyed by signing, that he has to use his hands, I don't know if that's his low tone, or him being unmotivated/stubborn. I know he can do some that he doesn't, he does have pretty poor body awareness still, that's something new I've realized that we're working on. To work on body awareness I have this brush, to brush his limbs and back, we also do joint compressions, massage, and vibration on his limbs. So, if I ask him where his facials parts are, he's kind of all over the place other than the obvious head, he loves that one. So I think as soon as he is more aware of his body in space he'll sign better. I'm sure that's part of his issue with walking too, he has the strength, it's more awareness of his body and confidence and coordination. He still has yet to make "ma" which is a basic sound, one of the most initial sounds children learn. Although he gets his tongue in his mouth easily, it's not easy for him to close his lips, he does, but not for speaking and I know when he does it is a lot of effort. I need to research more on how to strengthen his mouth. We have tools, but he's not a fan of them at this time. (Sorry if I mentioned this above, I keep blogging in chunks. I also forget if I'm writing to Everett or about him, so that's probably annoying too.)

Speech Feeding - He is eating well and eats most anything, he still will typically have one puree at each meal if not more, if I'm in a hurry for therapy we have to do puree for sake of time. He eats solids well but they take long, some things like meat or anything "tough" takes him a while to get down. I have to "chase" those foods with either crunchy or puree to help him get them down. He's gotten really good at control and moving his tongue to get his food where it needs to be. I'm comfortable with what he needs for eating at this point, now he needs to learn to feed himself. He does quite well with his hands, utensils are another story. He needs to get off of his bottle, we're working so hard but he's refusing cups, I've tried every cup under the sun. They want him using a straw cup and he used to (before molars) drink 1/2 of a cup of milk from a straw cup, then after molars started he's refusing to drink from a cup and won't let me use his oral tools, which help strengthen his mouth and give awareness to his mouth. Soooooo, we're working hard in therapy for an hour on Monday nights, to basically trick him into doing these things. We have to pull out all of the stops with bubbles, iPad, toys, songs, you name it, we have tried it. Bubbles work best for him, that's why it's hard for me to do this on my own at home, because I need a bubble blower while also inserting the cup when he's the most distracted, it's a dog and pony show, I just need a few more hands and I would have it! I'm not sure how much his huge tonsils play in the issues he has, I'm hoping a lot and when he heals we can make some gains, but for some reason I think Everett being stubborn is my biggest issue at hand.

I guess that sums up what he's working on, I have a three page list of "to dos" that I'm supposed to work on with him "daily". I typed this up myself because when I go to work on things with him I get overwhelmed at where to begin, the list helps me organize and attack and ensure I'm not missing something or completely forgetting to do something, this list is ever changing with his development - but to do each thing expected by each different therapist in one day Phahahahahahahahahahahahahahahahah. If only there were 300 hrs in a day. I do my best to find a happy medium, for him, for me, for Clara and for the sake of our family. Do I always feel I need to do more? Yes. Do I want a live-in therapist?! Yes! It's so hard to balance life with two kids, it seems near to impossible to balance life with two kids when one has serious needs. It's rare to have a day in a week where we don't have an appointment, it's typically two appointments a day. Thursdays are usually our days "off" if there's no ENT, hearing test, sleep study, blood work, eye apt, GI apt, surgery apt or actual surgery, general dr visits, sickness that sneaks in which causes more fun.. it just never seems to end. One of those seems to always steal our Thursday. I keep telling myself the older he gets the easier it will get, I have no clue if that will ring true but I tell myself that to keep my sanity. I know with independence with both kiddies I hope to regain a moment for myself or my marriage. I know the imbalance is unhealthy and I try to figure out how to juggle it all, but can't seem to ever feel that I do, someone is always neglected. With all of that said, I wouldn't choose a different path. I'm up for the challenge, and it's because he is, since day one, he's fought. I'm so lucky to have a sweet little angel who takes needles like a champ, who will work tirelessly when already drained from apnea, and who is a social butterfly and brightens everyone's day. He has to work so much harder than I've ever seen any human have to work, and he does it with a smile.

Everett,
On your second birthday, I want you to know that you have pushed me as a human in ways I never imagined. You've made me a stronger mama, wife, and woman. I'm not afraid to speak up anymore, I don't care what others think of me, I revel in the simple things and the milestones that you work so tirelessly at day in and day out. The love you provide our family runs so deep, you teach us how to live life in a way we wouldn't have been able to, we would have missed the boat without you. We would have been caught up in our superficial life thinking we had "hard times". You remind us how good life really is. Watching you work your little tush off each day for the most basic skills remind me/us how easy we have it and what true endurance is. Your strength is unbelievable and your unconditional love is irreplaceable. The smile you give everyone is fulfilling, and it can make anyone's day. I'm the lucky one that gets to wake to that smile each day reminding me of what's important. I slip, and get off track, but if anyone can get me back on the train, it is you, my love. I can't thank you enough for being mine, whether you chose me or some higher power, I'm the lucky one and I promise to always give you my best. I just hope I'm always enough. Thank you for kissing me and hugging me on command, you make my heart full. You'll leave an imprint on this world my Bubs, and it's going to be much bigger than those itsy bitsy toes of yours that are "soooooooo stiiiiiiiiinky"! (Just kidding, you love when I smell your toes and say that, you laugh so hard and slam your foot back at my nose.) I can't wait for what's to come with you, you keep this adventure interesting, that's for sure. I love you with all of me.
Mama or Mama Jo (daddy calls me)