Sunday, January 23, 2011

The war in my own mind

It has been a FULL week...one of those weeks that because of the number of events and level of involvement, feels like a month. I'll start with the best stuff:

Elijah had a weight check this week. Since we last saw our pediatrician, we have made a few changes to tackle his slow weight gain and difficult constipation issues.  Our appointment was Thursday and unfortunately I couldn't be there.  Daddy had to take him while I was holed up at a little cafe in Los Feliz waiting to meet with a potential client...who never showed up.  As soon as I had written off the appointment as a bust, I called Charles. Elijah gained 10 oz in two weeks!! That's nearly twice as much as he's gained in any other 30 day period for the last 5 months! If he keeps this up, he will have gained a pound and a quarter by his one month check up.  I am relieved.  Relieved that he CAN gain more, it just might take a little more effort than some.  Charles and Eli were also sent down to the lab to see if they could do a blood draw again- apparently there isn't another option at his age, other than blood work, to test to see if his thyroid is functioning normally or not.  This time around, although there were a couple of failed attempts, the nurse did finally get a vein and was able to draw blood. (Huge exhale. And perhaps I should thank the client who never showed, for giving me an excuse to not have to watch my baby cry while nurses stuck him with needles.)The results came back the next day and our pediatrician called me personally (which of course freaked me out to hear that HE was calling), but I think he just wanted to spread the good news: Elijah's thyroid is NORMAL. Woow hoo, little trooper, woo frickin hoo!!

We are now a couple of weeks into our new schedule for Occupational therapy (OT) and Physical therapy (PT). They are both going really well. The fact that the therapists come directly to the house and work with our schedule takes a lot of the pressure off over how we were going to add MORE into our daily life.  I'm learning how to play with Elijah a little more effectively- so that he's playing, but also getting a little baby workout. I'm learning that he's not the strongest little guy out there (no big shocker) and he might fall a little toward the not-wanting-to-try-so-hard side, but who can blame him? Perhaps it's a combination of the PT, the OT, the new experiences, a few more weeks of life, but it seems that he is rolling easier both ways and taking more notice of situations: Just yesterday, I was tickling Christian while Eli was doing belly time on his playmat nearby. He was watching Christian and I play and whenever we started laughing really hard, he started laughing really hard. Oh my soul. :) He also seems to be doing a little better on the bowel movement front (or should I say back??) We've added flaxseed oil to his diet and the OT taught me some baby massage. I don't know if it's one, both, or a combination of that and more moving around, but he seems to be managing his constipation better. He's not crying as much anymore during a BM and gets a good amount out. Again, my apologies to those that are squeamish about these subjects. It is now a fact: Poop makes me happy. Never thought I'd say that, but it's a regular party around here when it happens.

My Mother in Law is in town and we've had an extra fun time doing a couple of outings with her around town.  We went to Descanso Gardens, which is one of my favorite places to go, got some fresh air and let Christian run.  We gave him the map, and said, "Okay. Which way should we go?" then let him entirely dictate our path.  He was in heaven.  Add in a little treat from the on-site cafe, and we were all enjoying a little piece of heaven.

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We also took in the zoo on Saturday and it was probably our best visit to date.  Even though Elijah just rode in style in his stroller, everything seemed to be a feast for his eyes.  Christian is officially at the age that turns the "zoo" into magic.  He was very specific about what he wanted to see and what his favorites were: The giraffes, the elephants, some lions, the gorillas and of course, the leopards. Unfortunately, the leopards were already put away for the day, or as we explained to Christian- They are sleeping.  So, instead, I've substituted a picture of our favorite, lovable leopard, Leo.  Here is Leo hanging out in the wilds of our backyard.  (And if you had any idea how much Leo is loved and how much Christian laughs when I do things like take a picture of Leo, then you would definitely be smiling...right now.)

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The extra benefit of having my Mother in Law in town, is that there is an extra set of hands on deck.  She is always happy to help out, by doing some dishes, making a meal, or giving us a night of babysitting so that we can have an adult night out.  I actually ended up with two of those.  On Night #1, I joined a group of girlfriends for a long awaited book club gathering.  As I mentioned in my last post, I have been dealing with some transitions in my friendships. I'm feeling much better about it now and have come out the other end with a whole new respect for people who take responsibility for their actions- because it's hard. It sucks. It doesn't feel good to say, "I messed up and this is how. I'm sorry" and then just let it go and know that you may not get forgiveness. You might not get an I forgive you, or an It's okay, and knowing that simply an admission of humanness and the act of being the person who is seeking to be better is Enough. Then, sometimes you do get the It's all good. And that is so nice. It's like a fresh breath, of "I was heard. People get me. I don't have to dwell..." So after a week of some difficult conversations between friends and doing the work of "grown ups" by owning up to where I may have made poor judgment calls, it was time to just enjoy!  Enjoy I did.  There was fantastic, intellectual conversations about the book, there was a cocktail or two, there were hilarious party favors and then there was something about a ridiculously silly and amazing "photoshoot" out in front of the restaurant... that we closed down. Turns out, I really needed a fun night out like that...of course, you're never fully relieved of your Motherly duties, so despite my late night, I was back up by 7am to attend to more feedings and real life.  Oh well... that little fact and the bags left under my eyes is why I don't do more late night craziness in my life anymore...

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(Completely embarrassing pictures withheld...)

The Night Out #2, came in the form of a double date night with my hubby and some friends of ours.  We were invited for dinner by a very close friend, who knows how to rock out a meal and choose a killer bottle of wine to pair with it.  It was mellow and cozy and exactly what we needed.  The humbling and surreal part was realizing that the path our life took with Elijah has also personally affected those we are close to. We talked a lot about Elijah and how getting his diagnosis made our friends have the difficult talks about what they would do if they found themselves in a situation like ours. More than anything, I do hope that the people who are in our lives and who get to know Elijah, and us as a family, can shed a new light on what it means to have a child with Down syndrome.  That it is not a sad situation, that I am not embarrassed or ashamed of my situation or of my son, that life is pretty much the same for us with our second child...just going at a slower pace. That Elijah is just as worthy of love as any child.  Our dear friends absolutely "get" that. I know that I am also not the only one hoping to change minds and educate people on what Down syndrome is really all about...but to a lesser, but still important degree, our friends are to.  They are re-thinking their statements, their comedy routines, their genetic testing options, their word choices...all of it.  It blows my mind. 

It's been a full week, where I feel a bit like I've been through a war...more with myself than anything. There will always be a bit of a war in my mind- I'm a thinker. A planner. A try to be do-gooder.  While those things are all essentially good things to be, they can drive you crazy. So, a little obsessing, balanced by a little family fun, balanced by a little crazy night out fun, balanced by isn't-life-mind-blowing?, is kind of what it's all about...

However, after such a full week of thinking and balancing and night-outing, I silently mime raising a glass and say,
"Here's to hoping that next week is boring...!!!"

1 comment:

Brigid Keely said...

I'm sure you've run across this before, but Celiac Disease is common in kids with Down Syndrome. Is it possible that gluten is causing the poor weight gain and constipation? I only bring this up because a friend of mine was recently diagnosed with celiac and I was reading about it and saw that it's linked with DS and thought of you and Elijah. It sounds like he's doing better, though! :)

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