My little man. You're something. You're lots of things. Happy, that's number one. Cute, that's also number one. Snuggly, that's the most number one.
You're recently easily frustrated. You are very physical lately, moving the biggest pieces of furniture you can possible move, stacking it on each other, putting heavy puzzles and big pillows up high, all over the place but thankfully still staying out of too much trouble. Once in a while you try to get into a cupboard and I tell you, "Close!" and you listen most all of the time.
You're eating and drinking well. You have trouble swallowing meats and rice and the like. If I alternate a piece of chicken with a bite of yogurt you get it down. You've gained all your weight back, 26 pounder. We're still working hard with the feeding therapist to get you off the bottle, slow but steady...right little man? Mama's trying not to sweat the small stuff. You'll bring a few bites to your mouth but I have to put my hand over your hand and you let me "help" you multiple times before you get annoyed and fight me. You will give yourself a bite and then you'll chuck the utensil. You'll feed yourself your favorite finger foods but if it's something I'm convincing you to eat I have to shovel it in for you to consume it. Our therapists always seem happy with your progress, I feel worried and like it's all too slow and far behind so I try to be more patient. Lately I have been thinking about the fact that this time next year you're supposed to be in Clara's shoes, about to go to school. I worry you'll not be feeding yourself, walking...ya know, the basics. I'm usually good about reminding myself I have a year and to live in today's moments, but those thoughts do creep up and freak me out from time to time, not to mention if you're uncomfortable in a brand new setting without your mama all day long.
You're busting through your eye teeth. I think the third is about to pop through, I noticed one after we left NY, the other bottom is barely busted through and I'm pretty sure one on the top is coming. You're sleeping horrible, I'm thinking and hoping it's teeth. For a period of time you seemed to be sleeping more sound throughout the night, still my 5am waker and without rocking you, you'll be awake. Tired, but awake. If I rock you, you go right back to sleep. I can't put you in your crib, you always wake up. A few times lately, I've been able to sneak out of the chair and leave you sleeping in the reclined chair, thankfully our security system allows me to watch you on my phone and I know right when you start to stir. The majority of the time I rock you from about 5:30-7 to get you that extra 1.5 hrs. I've let you be for weeks, you wake anyway, you're not looking to be rocked, you just can't get yourself back to sleep in the early morning hours. Two books that I've read mention those with Down syndrome are early risers. Booooh. Your sleep is so important for your development, I try to control what I can to help you grow big and strong. I love rocking you, although I dream of working out, doing school work, blogging, and sleeping while rocking you...then I bring myself back to how good snuggling you feels and nothing else compares. You're so big we struggle fitting cozy in your rocker, I wish I could snap a pic of some of the positions we rock in so you're snug as a bug. I envision crawling in with you when you're in a big boy bed and cuddling you in the morning for the rest of my life, screw getting in shape in the am hours! ;) Post operation sleep study is August 15. I wonder if all those wires are able do determine if you're waking from pain from teeth or apnea. I hope it can or I don't think we're going to have accurate results.
You're over your typical toys. I'm getting my thinking cap on lately and trying to keep things interesting for you. You want to be on the move, so taking you to the park and helping you climb up on things is fun for you. You're walking is coming along and you feel more confident and sturdy but we have a ways to go still. Now that I'm well beyond you being two, I've had time to settle on the fact that you're not walking at the two year mark. I don't know why I place these thoughts in my head. We've been on a break from PT, I trusted Jenny's (our PT) advice, she was right, you're still making gains. I hope to have us back two times a week starting in September. Until then, we'll continue to plug away at home.
Speech is the same, that's so concerning to me, you haven't made gains in over a year. You understand (receptive language) so very well. You follow all of my commands and we're now working on two step directions. I just want someone to tell me, "It's normal to have YEAR long plateaus, he's not talking because of X, Y, and Z and he will." That would allow me to be at ease. I'm doing everything I know. We use flash cards, you are constantly picking up new signs, I'm having you vocalize a lot more now. Your sounds don't always match of course, but you try. Although your attention span is shorter than it was, everyone is always impressed by your ability to attend to a task, now that you're two and on the move. You watch your Gemiini program which I hope helps, it's a research based program that has short video clips that repeat words, have real world pictures, zoom in on the lips, etc. I'm not positive what you take away from it yet, I do know it builds your vocabulary. We always practice signing with it too.
OT we are shifting. Since you're bored with your toys and fine motor skills, I've asked to move into more typical toddler activities since that interests you more, things like coloring, climbing, make-believe...your attention span is short with some of the more mature activities, you're not ready to color a page, but you don't get upset/frustrated while playing and show general interest. We're working on dressing and undressing. You always help me put arms through and lift your booty, now we're putting more work on you with dressing and undressing. You're getting much better at it all, before you know it you'll dress yourself faster than your sissy. Self-grooming and feeding is a lot of OT right now, basic daily life skills.
You've developed a very fun sense of humor. You're playing and playing rough with your sissy. You're getting mad and wanting to hit or pinch mommy when you get frustrated, I think that has to do with teeth, this happened in the past when your mouth was in pain. You fight hard for the spot on daddy's lap, shoving sissy off which is new and funny. You and everyone around you get into giggle fits and you're so cute no one can stop, the harder we laugh at your cuteness the harder you laugh.
You're in stranger danger mode. When people you don't know or know well say hi, you turn and hide in my shoulder. I'm glad sissy is home with you for the first week while I get back to work and you adjust to half the day without me. It's Abbey, our sitter from last year so that helps. You cried the first day, you were on the verge and then I freaking forgot my keys so that put you over the edge, mom fail. I think it's already getting better after four days this week. Hopefully when sissy goes to school next Thursday you're okay on your own. I'm excited to be able to give you more attention that you need while she's in school. I had one on one time with her since she was first born and being able to job-share and take you to therapy alone and focus on you is going to be so wonderful. I'm going to miss her so much but I'm hoping she'll be getting what she needs in school with socializing and such while we take your second year and run with it. I'm excited to hone in on what you need without trying to divide my attention and also feeling guilty about dragging her to all of your appointments. I always tried to take her (you both) to the park after for "QT" for her but I can't ever give her QT with both of you and the attention you need at the park without walking. Daddy and I are figuring out a schedule where we are able to spend time as a family and have individual time with you both.
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