Friday, July 15, 2011

Ilse has done so much changing

Ilse has changed so much the last little while.

She makes it very plain when she is tired, and if I put her in bed she will go right to sleep. 

She is sleeping for longer and longer stretches of time.  Let me rephrase that.  She is sleeping for longer and longer stretches of time at night.  She is awake quite a bit for long stretches during the day.

She doesn't caterwaul as much anymore when we change her guaze around her g-button.

She is grasping toys and beginning to reach for objects.  She is starting to smile, but it is incredibly infrequent during awake times.  She smiles pretty frequently when she is dreaming.  Her smiles are like a ray of sunshine, and maybe no one else would even recognize that she is smiling, but I do, since it is just like looking in the mirror.

Here is Ilse with her Mamaw.


Ilse holding and gazing at her rattle.


It's a little hard to see, but in this pic and the one below, Ilse is holding Mamaw's hand.  :)




And here is Ilse's new favorite spot.  We got her this play place because it was pretty and pink with lots of things to engage her. 


And Ilse's favorite toy in the Play Place is this bird.  It makes nature sounds, wonderful songs, and there is also a movement feature where it will play music when she hits it.  She cries when it turns off.



We've been to several doctors appointments lately.  After an unfortunate trip to the ER the other night since the nearly two year old Jumping Charlie jumped on Ilse's tummy, we've had two other appts.  The poor child got her two month shots and a clean bill of health at the pediatrician's office, where I was able to check off many of the things on the 4 month developmental list.  That was satisfying to a certain degree, especially since the doctor seemed kind of negative about the various things (in her opinion) that are going on with Ilse.  She said that even if Ilse doesn't have SLOS (or SLO as Michael insists it's called, but I refuse to call my child a SLO (slow) child, and that is why it is S  L  O, Kim says, but nevermind :) there are so many other things going on with her.

I disagree.  I think she just isn't used to any kind of issue; after all, she had never given a child a vaccine through a g-button before.  The nurse couldn't manage it either.  If there is ever an oral vaccine again I will insist on administering it myself.  We are just used to disabilities and other issues around here.  CP, amputees, high blood pressure, emotional trauma, etc..  Those things are normal life to us, so anything Ilse is experiencing isn't that much out of the ordinary for us.  Apparently it is for her doctor, though, and even though I really really like her pediatrician, I am glad we don't have to go back for two months.

We also saw the GI.  I LOVE him.  He is so down to earth and logical!  He wasn't freaked out that Ilse has lost 30 grams in a week.  He knew she would and told me that she was doing great!  She is on the growth charts and has some nice fat stores.  She is throwing up less, too.  I'm so happy he gave me the all clear to stop giving her extra calories in her milk.  He isn't even worried about the calories she is taking in; other GIs calculate you to death I think, but he just is wonderful.  So long as she has fat stores and is developing correctly (ie, not too fat to move) then he is happy and I can give her as much or as little as I want and that she does well on.  He said if her wait goes down more, we'll just increase the volume but NOT the calories.  Ahhh, that's nice. 

I'm also working on getting her milk into her faster.  She is easily able to tolerate 90 ml in an hour and 10 minutes.  I'm going to start speeding it up even more as soon as she is over her cold.  When we get it down to 20 minutes, I'll be happy.  Well, I'm happy now, but it would be better for her if her eating were faster.

We are still waiting on the dna test to come back to confirm (to our satisfaction) that Ilse does indeed have SLOS.  It'll be at least another week, the Lab told me.  I got tired of calling the doctor and so called the lab.  They are nice and very informative.

All in all, we're all doing well, despire the horrid cold Tim has and the sore throat I am flirting with.  We love our babies and our families.  We do NOT love the fact that a pen made its way into the washer and baptized Ilse's burp rags in ink.  But that is the risk you take when Mount Washmore is under and on top of your husband's desk.

1 comment:

  1. Em's we have ran into that kind of attitude many times. Cut ties and move on.....is what we have always done and we have never regretted it. One dentist refused to work on Sarah for NO REASON! I was fuming...but we wound up with a better dentist.
    BTW- what vaccine did they need to put in the g tube?
    You can ask for DEAD VIRUS polio (shot) instead of live virus (oral).
    The dead virus is safer. :)

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