Monday, February 18, 2013

47 weeks

B was 47 weeks last Thursday!  We have been busy ladies the past few weeks and obviously the blog has taken a back seat to other stuff.

B's stats for 47 weeks:
* weighs 10lb-15oz (this is not enough weight gain lately due to spitting up)
* wears size 2 diapers and is between 3months and 6months clothing depending on the brand
* has been sleeping in her room in her crib for 2 weeks now...she sleeps very well in there!  She sleeps most nights all night except for one last week when she had a tummy ache
* is ticklish all over
* still loves bath time, rocking, singing, and chatting
* is working so hard in therapy...we started last week!  We go once a week for physical therapy and work on things like flexibility and holding her head up.  Then another day we go for occupational therapy and speech therapy.  Right now in OT we are doing things that are similar to PT and things like reaching for toys, stretching her hands so that they naturally rest in the open position, and such.  Then with speech therapy we are working on pre-feeding things and communication.  It's all super exciting!  They are really teaching me so that we can work on these things at home...more on this below.  Hopefully when we get her gtube done we will have more time for this because right now it's a stretch to fit in all our therapy with feedings.
* laughs and smiles all the time

She has goals in therapy to work on for the next 12 weeks, and then we will measure where she got with them.  One goal is to talk in conversation turns with me 5x in a row.  So I say something and she coos back (or another sound) and so on 5 times.  She can check this off her list already...we have a talker!  She is just like her momma...loves to run that mouth...I love it!  Another goal is to look at Momma when we ask her to 5x.  I think she will get this one quickly too...she has done it this weekend without having to ask her 5x.  Lots of the goals she has are things we do every day but it's nice to have someone helping me!

This week we have our appt with the surgeon who will place her gtube.  It's just a consultation but we are going to have to make a decision about doing this other procedure with it...prayers appreciated!

We also have a consultation with a plastic surgeon about correcting her palette.  I have no idea what to expect.  I've already been warned it is probably more than one surgery.  I'm very hopeful that we have that good ole gut feeling about the right thing to do like we have so far.

Last week we had an appt with her cardiologist.  Long story short: her lungs are still keeping too much blood from shunting the wrong way through her heart.  That is great!  Strange news I did NOT expect to hear: the surgeon has reconsidered and is willing to FIX the hole in her heart...meaning open heart surgery...the surgery we were told no one would ever do (which we always knew we could find someone in another state to do but didn't feel it was right for B).  There is a lot more to this story like the fact that it doesn't necessarily improve her life expectancy or quality of life and could actually make her very sick.  We don't think that we will pursue this at this time because we feel that God has shown us the way and that's not it.  I just wanted to share because my hope and prayers are that this doctor's mind and others may be opened to other Trisomy babies who do need this surgery.  I hope that B has shown that babies with T18 CAN be strong and survive.  I hope that if a chance needs to be given to another that it is.

Thank you for all the help locating the rattle and them!


1 comment:

  1. Happy 47 weeks B! I will pray with you for wisdom and peace and that good ole gut feeling with decisions. Yall are the perfect parents for Battley, and I know you will make the right decisions for her! PS I am still looking for the perfect rattle...I just haven't been able to find it. Did you find one? If not, I'm going to look on Amazon and order it. :)