Thursday, September 23, 2010

No surgery...again

Where has the time gone?  I'm not sure.  It's been so long since I've posted anything.  We've had so much going on that I don't even think I could write it all. 

We've been busy, busy busy now that work and school are back in session.  Homework. Reports. Deadlines. Dr appointments. Sports. Ugh!  I get tired just thinking about it all.

My family and I have been going through a bit of a difficult time.  After all, it's not easy in a family of 6.  Meanwhile, I have been feeling like sort of a shell of myself.  Its kind of like I've been watching my life from above.  Like I haven't really been living my life or have only been present for glimpses of it.  Not sure where this recent feeling is coming from and I don't even have the energy to guess.  But, overall we are all healthy, we're all getting along great and we're making it.  We know how blessed we are and we know things could always be much worse.  Just continue to pray for us please.

Kennedy update--she did not have her surgery on Sept. 9th.  She was not feeling well again and had a cough.  We are frustrated to say the least and ready for the surgery (tethered cord surgery).  The surgery was rescheduled for a day in Nov.  She is feeling well now though.  And by feeling well I just mean no cough.  Recently I've been worried about her muscles though.  She is growing and getting taller, but she doesn't seem to be getting stronger.  She is starting to refuse to bear any weight on her legs and she gets tired and starts crying after sitting on the floor for only short periods.  She also has bouts where she cries and is fussy for a whole day or two and we can't figure out what's wrong with her.  She's still only drinking Pediasure with fiber and eating no solids--she's 19 months.  She does have interest in solids, but she can't tolerate anything of any size without choking or just letting it fall from her mouth.  But, this past Sunday she ate a few bites of mashed potatoes and it. was. awesome!  I'm still waiting on kisses and dancing to music and consonant sounds.  Those are my top three.  Crawling would be great too, but those are my top 3.  But, until those come I will be thankful for smiles that tell me she knows I'm her Mommy and my giggles that she gives me freely. Love that girl!

2 comments:

  1. Those smiles always help. I hope things get better for you all soon..

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  2. Nice to “meet you.” My son has 18 q deletion syndrome as well. Here is my post explaining how we found out shortly after he turned 2.

    http://wolfsonsafari.blogspot.com/2010/05/answer.html

    ReplyDelete