Semi-Wordless Wednesday

Meredith & my latest project. Meredith was introduced to watercolors and I have a new sign in my hallway for people to take off their shoes before coming into the hose.

Torturing Myself

Lately I have been digging myself deeper & deeper into a hole. I have been looking at pictures & watching videos of Meredith from her 1st year. I love looking back at her, but I'm not watching them simply to enjoy them. I'm looking through them to see if my memory is correct about her development. I'm watching the movie to see a glimmer of hope that Sean on track.

Yes. Yes. I know. All kids will develop at their own pace regardless of the number of chromosomes they have. But I am having such a hard time accepting Sean's pace. I was doing alright and I know that pedi says he's doing well. I just can't get a handle on what is Sean's natural personality & what is the down syndrome. I feel a sense of urgent need to know what is Sean and what is the down syndrome. I know that it is all him. Yeah yeah. That's who he is because he has 3 of the 21st chromosome. Whatever. I feel this overwhelming desire to know what he'd be like if he didn't have down syndrome.

I can't seem to make it passed "if he didn't have ds, would he develop more like Meredith did?" I know I shouldn't compare them. I don't know why I can't make it passed that. I feel terribly guilty about it too. But then again.... most of the time I feel guilty for eating iced cream, but I still do that.

I'm tired of therapies. I think the therapies are great for the kids, but only serve as roadblocks to parents' happiness. The therapies only seem to be feeding my doubts about Sean's development. The therapists only see Sean for a very short time every week. And if he doesn't pt on his full showing, they dismiss it. I hate feeling like I need to defend what I know to be true in his development. I hate having to feel like one of those moms that is lying about their kids' development & what they're doing. But that's exactly what I feel like every week when a therapists asks "is he doing this? because I'm not seeing it" And I say, "He is doing that." I mean come on...... they're only here for an hour tops. Maybe in that hour he couldn't care less about showing off.

I'm also having a very hard time understanding why some of the things the therapists feel are "bad", are "bad". It's one more reason I have been watching videos of Meredith. I'm trying to get a sense of whether Meredith did these "bad" things. If she did.... then I can only assume that a lot of folks do. So why is it bad? Did that make sense? I hope so.

I now understand why so many parents don't do the exercises/activities. I now understand why a lot of kids only get the therapy when the therapists come. I do try to incorporate everything we learn into our weekly life. There is no way I can cram it all into a day. So I am for the week.

So as part of where I want to be in the future from my last post, I just want to be more relaxed. I want to be more relaxed about Sean. I want to be more relaxed about therapy. I just need to be able to enjoy Sean for who he is. I don't know how to get there or if I even can get there yet. I need to be able to shrug it off.

For now, I will continue to wallow and continue to torture myself with Meredith's videos. I will look for some glimmer of understanding of who Sean. I will continue to work on ways in which to get out of my development funk. Hopefully one of them will work soon.

Where have I been?

I have been wrestling with myself and my goals for my life. Well my life right now. I've been pondering what it is I want to accomplish before the summer. Where I'd like my mindset to be headed.

I've also been working on starting Sean's 1st birthday slideshow. I worked & worked on M's slideshow only to have to go through to many photos, have my computer crash & lose it all in to short a time to start over. Read: less than 1 month before her bday. So I've started Sean's. I'm gathering the music to be played. I'm putting the pictures together.

I've been struggling to find a new balance in my daily life as well. I seem to have lost some momentum in the last few weeks. I'm getting there, but.....

So I'll be back! And soon. Probably tomorrow.

World Down Syndrome Day

Today is World Down Syndrome Day. It's 3/21. 3 of the 21st chromosome is what makes up Down syndrome.

So in honor of today, we're celebrating that Sean has designer "genes".






 

Stats here. Get your stats here.

On Thursday Sean had his well visit with the pediatrician. Last month Sean weighed in at 15lbs even and was 26.5 " tall.

We took bets on how much Sean weighed. I guessed 17lbs. The nursed guessed 17lbs 2 oz. A friend guessed 17lbs 3oz. Dr. D looked at Sean and guessed 17lbs 10oz without seeing what he weighed last month.

Sean weighed in at.................. Wait for it................... 16lbs 10oz. He's 27" tall. I am still in just a tad bit of shock that my little baby gained 1lb 10oz in a month.

I made a deal with Dr. D a while ago. He & his nurses wouldn't ask me about milestones & I promised to remember to tell them everything Sean WAS/IS doing. So we discussed all of the things Sean is doing. He's sitting for upwards of 1/2 hour at a time. He'd probably be sitting more, but he's pretty active.  He's saying "ma ma" and "da da". He knows his name when it's called. He is standing up when he has something to hold onto. He's imitating sounds & words after we repeat them a few times. He's drinking with a straw and is 95% on table foods.

Dr. D was extremely pleased and told me that based on everything he saw & is hearing, Sean is at the early end of "normal" in the timeframe that they look for milestones in typical kids. Even though I know Sean will do things when he's ready to do them, it was still nice to hear. I asked about Sean's weakness in his shoulder girdle. That seems to be the only place he has any low tone. Dr. D pulled on Sean's arms and said that there really wasn't much in the way of weakness. Some, but nothing that PT & OT can't handle. He said there was no nerve damage. Thank goodness!

Then I asked about Sean's cognition. Lately I'm noticing that Sean isn't demonstrating much in the way of genuine curiosity. Now..... let me start this by saying that the only infant I really have to compare to is Meredith. Meredith has always been obsessively curious about what things do, how the worked, where the sound came from, etc. And I don't just mean when she was 12 months old or anything. I mean right from the start. If something played music, she turned it over & around until she found where the music was coming from & then spent hours trying to figure out how to get to the exact pinpoint of that music.

So yes. When we show Sean that toys do "things", he does those "things". My concern is that he isn't seeing what else "they" do.  He's not demonstrating any curiosity to see what else his toys do. How differently the wooden spoon sounds on "this" toy compared to "that" toy. So I asked Dr. D.

Dr. D said that they don't even look for cognition until 12 months so I shouldn't worry about it yet. Um.... He acts like he doesn't know me. I let him know that I had already consulted Dr. Google so he might as well give me the correct information before I go spreading smut around on the playground. And here's what he told me. Drs really look into cognition when speech really takes off. Around 12 months old. At 12 months old the drs like to see 3-5 words for a typical kid. He said that children with Down Syndrome generally speak later than typical kids, but that wasn't 100% across the board. He said that a word is anything a kid uses to describe something. So even though we call a cat a "cat", a kid might call it a "jabba". It's a word as long as it's consistently used. Drs look at expressive language (speaking & signing) as well as receptive language and an ability to demonstrate that they understand what they're hearing. So yes..... the kid might call a cat a "jabba", but he should be able to point out or get the cat if asked where the cat is. Not where the "jabba" is. Does that make sense? Geez I hope so.

I'm a nudge. I hate the unknown & I'm impatient to wait for the unknown to just bite me in the ass. So I went ahead and asked him where on the cognition scale he felt Sean was. He said based on everything he's seen so far, Sean's doing pretty damn good. Thank you Dr. D.

Meredith was kind of junky on Wednesday night so Dr. D gave her a quick once over to see if he even needed to go get her chart. Have I mentioned how much I adore Dr. D? Not sure if I have, but..... Anyway, she does have some junk in her nose, but no sinus infection & her ears were clear. So was her throat. Thank god! Of course she & Sean were infinitely worse as soon as we got home last night, but that's a whole other story.

I also told the nurses that when they're filling out the paper with Sean's stats, they should put trisomy 21 & tetralogy of fallot somewhere else other than as a diagnosis because then the chick downstairs tries to charge me for the well visit. The nurses said it was in the ins co that was charging me. No they aren't. If the dr puts "well visit" and that's it..... we don't get charged. I had to explain that trisomy 21 is only a diagnosis if the dr was treating it and that the tof was repaired and they're not treating that either. The physician's assistant agreed.  The nurses put it somewhere else and I wasn't questioned when I got downstairs. Imagine that.

After that we came home & had lunch and then headed to the beach. It makes me giddy with excitement to know that my kids love the beach as much as I do. I don't know what I would've done if one or both of them hated it. I love love love the beach! We played in the sand and then headed over to Rob's parents' house. We stayed for dinner.

All in all a great day!