Musings of a Marfan Mom

August 16, 2010
by marfmom
4 Comments

Thoughts on an ICAN Meeting

Last Tuesday evening I took a big step in preparing for Smudge’s birth by attending my first ICAN meeting. The International Cesarean Awareness Network, or ICAN, is a non-profit devoted to improving maternal-child health by preventing unnecessary cesareans through education, providing support for cesarean recovery, and promoting Vaginal Birth After Cesarean (VBAC). You can find out more about them here.

ICAN offers support groups for women who have had difficult c-sections in the past. My friend Emily runs one where she lives and recommended that I go check out a meeting close to me. I was really hesitant for a while…I didn’t want to walk into a situation where 1) all the other women hated all doctors/hospitals or 2) I’d be given a hard time for not planning a drug-free VBAC.

I tried to tell myself for a long time that my c-section was necessary. It’s not true. The medical record actually marks it as elective. My orthopedist here casually mentioned the epidural isn’t even really near the dura sac, unless the doctor putting it in really messes it up, and that a caudal is an option that eliminates that concern. I feel as though the anesthesiology team simply didn’t want to assume any liability for having a high risk patient (they were scared of my dural ectasia) and in covering themselves put me in the position of having a surgery not recommended for women with my aortic size, which led to complications. I think that that alone I could move on from, but they kept me away from my baby for no reason. They refused to perform tests necessary for my health and refused to give me information about what was wrong with me. They mocked me.

I still have bad dreams, over 18 months later, about my time in the hospital with Menininho. As I’ve prepared for Smudge’s birth I realized that I am so stressed and frightened over a repeat of what happened before that I can’t fully embrace my preparation. I need to be able to let it go.

So, I very nervously attended my first ICAN meeting. It wasn’t at all what I had expected or feared! The women there each briefly introduced themselves and why they were coming, but there were no drawn out stories. This month’s speaker was a therapist who specializes in birth issues. A lot of the background info on therapy that she gave I already knew from my BA in psych, but some of what she said really resonated with me. She talked about how fear of having the baby taken away can delay labor, and how stress in general slows down the beginning and progression of labor. Like cats, who hide to birth, our bodies are designed to birth when we are most comfortable. I think what I am most afraid of is being separated from Smudge like I was for Menininho, and not knowing what is happening to him or having any control over it.

I’m really glad that I went to the meeting and I’d encourage any other women who have issues with their c-sections to check out one as well. I’m already looking forward to next month’s!

August 12, 2010
by marfmom
14 Comments

Big Advances

It’s been a busy few weeks on the Menininho front. I’ve gotta say…pushing for therapy was the best thing we could have done. After 3 sessions of speech therapy we’re already seeing improvement. I’ve noticed M. engaging with us more than usual when he wants something. There have been more episodes of pointing during breakfast to whatever foods catch his eye and banging on the sink when he wants his sippy cup. This kid is motivated by food and so for right now I’m worrying less about him getting a balanced diet and putting more focus on rewarding him for pointing. If he wants to eat mostly bread, yogurt, cheese, raisins, bananas, grapes, and applesauce for a time, so be it.

He and I have also toured three different group therapy centers (basically therapeutic preschools) since I was successful in my appeal for him to be approved for that service (did I ever blog about that?). I can’t wait for him to get started! Unfortunately the center we love is full right now and we have to check week to week to see if they have an opening. We’d appreciate any good thoughts/prayers/vibes you care to send our way that they have an opening for him soon. Menininho really responded to his visit there and not only do they have a 1:1 staff to child ratio, they also have a speech therapist, occupational therapist, and behavioral therapist on staff. Mark and I are confident that the program will not only help M. with his social interactions and attention to activities, but his sensory issues as well, not to mention give him another place to reinforce his signing.

Tuesday night was positively thrilling. I was away at my first ICAN meeting (more on that next week) when I got a text from Mark that read “ 🙂 .” When I called him on the way to the car he’d only say he had some good news for me. Not gonna lie…I was expecting him to say he’d reached the #1 spot in gold level for Starcraft 2 or that something had worked out really well with his project at work.

Turns out? I was wrong. OUR KID SIGNED! Yes, while I was gone, Mark spent a half hour with M. and a box of raisins, working on the sign for “more” (the one The Man is having us focus on). While M. has occasionally has taken our hands and made the sign with them, but never done it himself. Until Tues. night. I was so excited I jumped up and down, called my mother (it was midnight her time), tweeted it, and made it my Facebook status. Yes, I told you I’d shout it from the rooftops.

Yesterday I was able to get Menininho to sign for me a few times. He is by no means consistent with it but that will come with time. I am just over the moon that my son is able to use a form of words to communicate with us! Hopefully the screeching will stop. And this gives me hope that the verbal words will come with time and that he’ll be able to learn more signs.

I know some may say that he just needed extra time, but I don’t buy it. We’ve been signing with him since he was 9 months old. We’ve tried all kinds of methods to get him to mimic us. I know it’s the therapy, and I can’t wait to see what other advances are in store for our little boy.

August 11, 2010
by marfmom
7 Comments

A Bit of Nesting

My friend Abbey is a domestic goddess. She cloth diapers, made all her daughter’s baby food, sews, decorates, and runs an awesome baby product store. She’s the reason I started cloth diapering and making our own laundry soap, and she’s the inspiration behind my re-structuring of the Menininho’s toy area.

Previously I’d put all of M’s toys into a giant plastic bin. This made for easy clean-up but it was hard to rotate toys, we often couldn’t find little pieces, and he didn’t really use the toys. Abbey’s post had been in my head for months and so when my friend Julie offered me her son’s old shelf and tubs, I knew it was time to implement my plan. In a surge of nesting I made Mark dump everything out of the toy tub, bring in the shelf from the store room, and take our son out of the house so I could get to work.

I was really happy with the result. Everything is organized by toy type, which should also help with Menininho’s therapy (he can work on sorting, taking turns, and following directions). Looks nice, right?

Then the boys got home. I was on the phone. Within 30 seconds it looked like this:

At least it was pretty easy to clean up. And, the speech therapist was impressed with it when he came over today and was able to incorporate it into the therapy session.

Now I just need to browse Abbey’s blog for nursery decorating ideas! 😉