My Family

My Family

Thursday, November 22, 2012

Updates and Such


I have been gone a little while from my blog.  I did do a blog over at Hopeful Parents, my blog away from home, but it has still been a while since I have sat down here.  I have been thinking about posts and I have a lot to share, but I needed a little time to breathe and regroup.  I was pretty down at the last post as I was having a hard go of it.  It isn't always easy having special needs kids, but it is also a blessing.  So to catch up on what has been going on:

Doctors:  Cary is now moving out of the specialist a day phase and we are moving into maintenance.  The doctors are pleased with her progress.  They point out that she has some chunky thighs (I guess this is good. Must be a medical thing, they all seem really pleased with it.)  and is growing hair (once again real pleased).  Our last big appointments were GI and feeding clinic.  Both said that she is 100% perfect weight for her size.  She is getting taller and eats basic solids.  She now sucks down food like it is going out of style most days and her NG tube is all gone.  She is on the adjusted WHO growth charts and is at proper 10 month size on these charts in the lower end.  That is her adjusted age, 10 months.  These charts will follow her till 3 or so and hopefully, she can graduate to the unadjusted charts by then.

Primary Doctors:  Unfortunately, Cary has joined the disease of the month club.  September was the stomach virus that put us in the hospital, October was a bacterial infection, and November is Strep Throat.  The fun never stops.  My sister-in-law warned me she is probably going to catch everything.  She is probably right.  Cary has been in a sterile hospital for a long time and between doctor visits, a brother in kindergarten, and being in the real world, he poor immune system is probably being pelted.  She responds well to antibiotics and is on the mend, but I hope she stays healthy for more than a couple of weeks!

PT, Speech, Vision Therapies:  I met with the director of Infant and Toddler Connection for a review of Cary's IFSP plan.  Cary had some lofty goals assigned to her.  She missed over half of them.  I convinced her to modify most of them as some were just very unrealistic expectations at this time in Cary's life.  I mean really, get dressed without crying at all?  Come on.  What baby doesn't squawk a little over getting clothed.  So now we have more realistic goals in mind, like sitting and rolling over.  I was also able to get vision therapy weekly.  Before we had bi-weekly and vision is what she needs the most.  Her therapist balked at coming weekly and tried to tell me I was doing a cracker jack job.  I yanked rank and insisted that in order to tie together everything vision was a key element.  I won.  I do feel a tiny bit bad because vision travels over 2 hours to get to me, but I did offer to go to her and that was refused so what else could I do?  Cary continues to make progress, but on her terms.  She is very stubborn and when she is done she is done.  I feel like sitting would happen a lot quicker if she was more cooperative, but it is what it is.  And I am stubborn too so I admire that trait in her.

Future Goals:  They started talking school with me for her, but at this time Shannon and I are keeping her home for one more year.  There is a really great school for the blind that I am looking at for when she turns 3.  Infant Connection was horrified and talked about "inclusion" and what a big deal that is.  I asked what they offered here for her.  While she would go to a "special needs classroom".  I guess their idea of inclusion is a classroom segregated with a garden variety of special needs.  O.K.  I may look and act like I fell off the turnip truck at times, but if she can't go to regular school why can't I cherry pick what would be best for her?  Anyway, I have a year and a half before I make that choice so I am not going to stew over it now.  I don't know what she will or won't be capable of.  Right now I am schooling her at home with the Montessori method and Reggio Emilio methods she is doing really well with it.

Marvin:  Marvin has gotten over his Halloween issues and is doing really well at school.  He surprises me with how well he has adjusted to public school life.  I really wanted him to pine more over his lost Montessori life, but Marvin just looks forward.  His teacher rocks and I am really really relieved not to be his teacher anymore.  I love my kid, but it was really stressful to be teacher and mommy.  Now I am just mommy with a small side of teacher and our relationship is much better that way.  Marvin loves his sister and reads to her, sings to her, and plays really well with her.  Thankfully, he has stayed pretty healthy this year.  He is looking forward to Christmas and raising an animal as part of his 4H work.  Yes, we have to get an animal for him.  But that is another post.

That is kind of a quick sum up of where we are now!  I have lots of other things to talk about, but they can wait for other posts!  Happy Thanksgiving!

1 comment:

  1. You certainly have your hands full, I commend you for it. Your children are lucky to have you in their lives. It is not an easy path to be sure. I only have one special needs child and it's been hard! And I never expected it or even asked for it. What I can say (eight years later--my son's eight now) is that I've learned a lot, I am humble, and feel lucky in spite of it all!

    Thank you for stopping by my blog!

    You might enjoy my other blog post here

    Best to you,

    Lisa Nolan