Angel Heart: March 2009

Ok more like 2 years and 17 days. I can't believe how the time has flown! I am amazed at how well she is doing. Its still bittersweet to think of how difficult those first few months (1st year!) were and how well she is progressing.

What is Angelina up to these days?

She walks all over the place- even stops to jump or dance if the spirit moves her!

She eats well by mouth, even fights us for our food sometimes. Her favorites are pasta, beans, fruit, cheese and she LOOOVES her milk. Oh yes, she recently discovered pickles- yuck!

She sings- its so cute! I'll have to catch her on video one of these times.

She competes for attention with Marcelina and Alex (mainly Alex). To the point that she tries to babble louder than they talk (pleasant experience). Or if everyone is telling a story, she has one to tell too!

She doesn't say too many words clearly. The sad thing is that more and more she is trying to communicate verbally, but it is difficult to understand. But at least she is trying! She use to be extremely quiet-- not anymore! She can actually be pretty demanding-- wonder where she gets that from? She does try to say "I love you" it is so sweet to hear her!

She puckers up big for kisses. And leans into you for hugs.

She can't get enough of Kobe-- especially when the poor guy is trying to rest in his crate. Funny thing is that when I move her away so that he can have some peace-- he whimpers for her.

And her Daddy's favorite: she runs to the door to greet him with hugs and kisses when he gets home from work.

Angelina is so spunky and full of happy energy. We keep a busy schedule too. She still goes to physical therapy twice a week, speech therapy twice a week, occupational therapy once a week, and her early start teacher comes once a week. I'm contemplating putting her in a group class like My Gym, but I'm a bit nervous about exposing her so much to other kids. I recently put Alex in a class there and he LOVES it! I thought he deserved it because he comes with me and Angelina to therapy wishing he had therapy. I'm sure to him it just seems like playtime for her. Anyhow, when I take him to the My Gym class, some of the mom's have other little ones and Ms Angelina is so antisocial with them! She's better with the adults. If one of the other little girls tries to approach her, she either tries swatting them away or is practically growling at them. So maybe we need to work on her social skills a little.

As far as meds we are slowly decreasing how many she is on. Recently her Infectious Disease doctor took her off Septra. (prophylactic antibiotic) I thought about hyperventilating ;) He actually said if I wasn't comfortable with it we could wait to take her off. The thing is she's been on this med since she 1st came home (3 months old) from the hospital. Because of her DiGeorge syndrome she is likely to have a compromised immune system. Kids with DiGeorge can either have no thymus or a partial thymus which will affect how they fight infections. A way of measuring this is by measuring their Tcells. Angelina's have always been on the low side, but the low normal side. If you are on an antibiotic too long, it can actually stop working for you. So for now, we will discontinue using it. Hopefully she does well without it and we won't have to go back on it.

She is still on post-op meds, Lasix and Aldactone. They are suppose to be temporary, so that's a relief. I'm hoping to stop her Reglan soon, since she hasn't had reflux symptoms in a long time. That just leaves her calcium glubionate. Once she's off the Lasix, we can recheck her calcium levels and decide whether she needs to be on it anymore or whether it needs to be adjusted. That one makes me a little nervous too. Angelina had seizures when she was 2 days old because her calcium level was so low (again because of the DiGeorge).

We did see her pediatrician last week, and she is very happy with how Angelina is doing. Our little monkey is measuring 31 inches and weighs 23.6 pounds! I'm pretty sure she was due for poopy diaper though! So maybe she's right at 23 pounds ;0)