Weight: Is around 22 pounds
Height: around 33.5 inches
We are doing pretty good. 2014 has started off better than 2012 or 2013 did. We aren't in the hospital like we were in 2012 and we don't have several impending surgeries like we did in 2013.
It has been fairly quiet around our house with just the usual activities. We do therapy and...well more therapy. She is getting PT/OT 3 days a week and 2 days of speech and some feeding therapy here and there.
Bella is still all tube fed but is getting better about letting me put her Nuk brush in her mouth. I tend to be better about updating Facebook but will try harder to put the fun and exciting things our little miracle is doing here as well.
We always appreciate prayers. And thank you for them as well.
Right now one thing we are focusing on is finding a way for Bella to communicate with us better. Her understanding is totally there but she isn't able to tell us what she wants and is starting to get frustrated. The hard part about this, is that we aren't dealing with just one disability. Bella is very involved with her motor (movement) and also has CVI and other vision problems. We had once thought that sign language was a good path for her but we are realizing that with just the use of one hand (old leftie doesn't participate much) sign language isn't going to give her a very usable vocabulary. Although she does sign more, yes, me, and please consistently. We are looking at a picture board but then her vision becomes a problem. SO I'm not sure what we are going to do but I know God will give us the direction that we need.
I still can't believe she is 2. It really does feel like it was just yesterday that we were in the NICU.
Bella inspires and amazes me every day. Thank you for following us on our journey!! We love you all!!
What a cutie! Do your specialists have any ideas about communication options. At GJHS, we have several non-verbal kiddos who use their i-pads to "talk" for them, but they don't have the vision issue. Could you teach her to use a keyboard that has tactile shortcuts for her "words"? Like my gma was blind so we glued different sized beads on her microwave so she knew what buttons were 1, 2 and start. So she'd have a word associated with a letter and have something she can feel on it. Then she can at least get the point across-she feels for the round bead on "S" and the computer says "Sandwich". I know there's stuff out there for sight impaired, just maybe not for pediatric kids.
ReplyDeleteYou'll figure it out and when you do, you'll not get her to shut up! Heavenly Father hasn't brought Bella this far to fail!