Thursday, July 26, 2012

15 months after a baby stroke and other updates

It's been a long time since I've blogged and I'm sorry for the absence.  I've been so crazy busy with moving.  Baba is a trooper taking in the changes without too much trouble.  He seems to grow more cognitively than physically now and I'm always amazed at how much he seems to know or understand.  Yeah.  I'm being THAT MOM...the one who thinks her kid is brilliant.  I'm just so happy to see the progress he's making and it does seem amazing to me.  Not that long ago, I wasn't sure he would be able to understand my words...so everything above that seems genius.  He loves his letters and numbers!  He studies them everyday...on his own volition.  Only this week, he started to be interested in words.  Isn't that backwards?  I don't know, but I'm letting him lead the way.  Who cares if it's backwards?

We are still breast feeding at 15 months.  In the beginning, I wasn't sure if I'd last 3 months, but now I am determined to let him wean at his own pace.  All these changes are hard on the little guy, so it helps to have a safe place to land.  If we had stopped breastfeeding, we would have had to turn to formula because he is still not eating much solid food.  I think it's a combination of difficulty managing the food in his mouth and sensitivity to touch.  He seems more sensitive to touch in his mouth.  Brushing his teeth is quite a production.  It gives me a little relief that I am still able to breastfeed.  I have a feeling that he would reject bottles and formula at this point...though he had supplemental feelings as a newborn.

It also gives me time to figure out how to present the food in a more tantalizing way.  In a way that would make it easier to eat.  It also gives me time to figure out what therapy techniques to add to the regimen.  I've always found dysphasia and feeding therapy daunting.  I also need to find a specialist, who can give me specifics about babies, since it's not my area of expertise. 

Trouble eating, translates to trouble forming sounds, which of course affects speech.  So Baba isn't talking yet.  He can say "mama", and I've heard him repeat a few sounds like "a".  But he doesn't consistently "speak".  He does, however, communicate using gestures and sounds.  He also seems to understand simple language, though it's hard to say how much. 

My main concern has to do with his hearing.  I know he can hear me, but he doesn't seem to be able to locate the direction of the sound.  When calls out for me and I answer him from behind, he doesn't turn towards me.  He keeps looking for me in front and if I don't touch him, he starts freaking out because he can't find me. 

I would ask the pediatrician, but we don't have one yet.  We are in the process of finding one, a not so easy task.  Sigh...

My mother is fighting cancer like a warrior, but it isn't easy.  My brother has really stepped up to the plate and is caring for her with supreme kindness and love.  It makes being far away seem less awful.  My mom understands why I chose to move.  She knows I did it for my son, to give him a better life.  Still, it's hard for her.  It's hard for us.

I've been struggling with the "art of blogging".  I started this blog to share our story.  I wanted to help other parents going through similar circumstances and hopefully be a source of helpful information.  I still do.  Yet they're is so much going on and so little time to spend writing.  I also struggle with how much to share about my personal life.  I tend to be a private person in the public venue, though I tend to be quite open with my circle of friends. 

As far as reading other blogs, I personally gravitate toward the ones who write positive messages.  It's comforting and fun to read.  Yet I wonder, are their lives really this magical or are they simply writing to encourage, not to share sordid details of their lives.  Where do I fit in this "blog world"?

I guess I don't know where this blog is going.  I feel like my mission is unclear and that makes writing more difficult.  I feel lost and I'm not sure when I'll find myself again.  I'm going to be 40 in a month.  Is this just a midlife crisis?  I hope that I will figure things out soon.  I have so much to share.  Things will calm down after we move to our permanent home in 3 weeks and we finally settle down.  We moved 3000 miles to the New England coast.  It's really beautiful and really hot! 

I hope you are having fun and staying cool! 

p.s.  a photo story

The future sometimes seems ominous.
Sometimes we have to be willing to take a step in a new direction.
Sometimes we have to learn something new.
Sometimes it feels like the obstacles are insurmountable.
New starts can be a little scary.
But if we keep smiling, we may just be able to succeed.

6 comments:

  1. BEA!! How you've been on my mind! So wonderful to hear from you and get an update on what's going on - and it sounds like SOOOOO much is going on!! :)

    First, oh my goodness, how that precious boy is growing! Love the locks of hair and of course, you know I'm partial to those puffy cheeks...

    Secondly, the hearing. Oh, how I know what you mean. We went through that for a couple of years with Lily and while I know she can hear, I am still unsure as to WHAT she hears. Does it sound like I'm underwater to her? Like Charlie Brown's mom or teacher on the telephone? I just don't know.

    And you know we're still working on the speech and she's almost 6.

    I am 100% confident you will do what's best for your son and you will figure out all you need to one day at a time. You will find a doctor, you will find a therapist, you will figure out how to feed that baby solid foods, and on it goes.

    Blogging? Did you read my post on this very thing? Probably not since you've been so busy trying to live life! I've made some changes myself - read here in case you missed it. Maybe it will help you, too:

    http://alongcamethebird.blogspot.com/2012/07/good-and-bad-of-blogging.html

    You just need to find your own rhythm and settle in. You'll get there, and in the meantime, lots of us are thinking of you and praying for your success!

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    1. Thank you, Lana. You are so encouraging! I read your post and found it very enlightening. It helped me to see that I needed to find my balance too. Thank you for taking the time to encourage me.

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  2. Oh my God , how he's grown!!!He ' s soooooo cute Bea!!! So immensely cute!!!'I've read the post above and I find it really encouraging.I'd like to write you more and more but the lenguage limits me a lot , so please forgive my terrible English. It's a plaisure to know you , read your story and look the pictures of your gorgeours , wonderful boy!Thanks for your kindness and patience and thanks for you beautiful courage!
    Hugs

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    1. Hi Clau!

      Thank you for your encouraging words! I wish my Italian was as good as your English. Thank you for taking the time to comment. It really lifts my spirits.

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  3. Congratulations on your wonderful breastfeeding milestone and your ADORABLE son! :) I nursed my daughter (who has CP) for what many would consider "extended" - but I considered it doing what she needed for as long as she needed it. I also understand not fitting into the blog world, by the way - but I liked reading what you had to say. (I'm here because of the Love that Max link-up - glad to find you!)

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    1. Hi Marla,

      Thank you for your encouraging comment. I read your blog and found reading about your daughter heartwarming. Your thrift finds are amazing too!

      Have a lovely day!

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