Saturday, February 28, 2009

All is well...

Which is why I've been afraid to post. It always seems that when I make a post about how well Gracie is doing, something happens and we end up in the ER or an extended stay at the hospital. So I'll start out by saying that Gracie has a runny nose. We're hoping it will just go away without morphing into something worse. She seems fine, and is playing and eating and being her sweet little self. She's a busy bee these days and I am just waiting for the day that she starts walking and then I am really in trouble. She's jabbering quite a bit and while most of it is incoherent, she has several words that she uses quite frequently. Off the top of my head, here is a list of Gracie's words and interpretations of Gracie's pronunciation.

that - Sounds like dat. This is a very common one. She points a lot at things she wants and says it.
bye bye - This is an oldie but goodie. She cracks me up with it because she uses it not only when we leave somewhere, but when she wants to leave too. I've noticed it a lot when we're at the doc's office. About 5 mins after we're in the exam room she starts saying bye bye and looking at her Daddy and me expectantly. She is a sassy one.
baby - She has a baby and uses the word a lot. Lately, she also combines this word with bye bye so that she says "bye bye baby"- its so cute.
door - usually pointing at the door or swinging it back and forth.
a bath - Sounds like baf. Also she never just says the word bath. Its always "a baf."
eye - usually accompanied by the finger gouging of whoever's eye she's talking about.
ball - This was her first word. :)
kitty - sounds like tikky, which is soooooo cute.
boo - she's still a huge peek-a-boo fan.
hat - taught to her by Munts who is usually wearing one.
book - she is an avid reader. ;)
ooooh - her excitement sound, love it.
hey - said on occasion when she's playing with the phone.
busy bee - Sounds like bizza bee. Noni taught her that one.
pasta - sounds like pitta, she loves pasta like her cousin, Nuvy.
apple - sounds like appa.
splash - sounds like spish or spash... obviously said mostly during bathtime.
tub - buh or bub... another bathtime word.
tickle, tickle - ticka, ticka It is so funny when she says this.
She also is trying to say "diaper dance" from her Baby Signing Time videos. This one is a work in progress and requires my prompting by singing the song to her, but it sounds like di di dah.
Thats all I can think of right now... if anyone remembers any more, let me know so I can add them to the list.

She also signs a few basic words.
more - she does this one a lot for Munts who then takes her to raid the pantry. :)
no - this is just her shaking her head.
hi - she has a great beauty queen wave.
all done
bed - she only does this one on occasion.
She can also do the hand motions for Twinkle Twinkle Little Star and has just in the past few days mastered the "diamond" motion. That was so exciting to see her work on.
I love you - This one is the best. She made this sign up herself. No one taught it to her, but one day she started doing this motion when we told her that we love her and she's done it ever since. Its like she hugs herself and turns from side to side. I think its the actual sign for cuddle. Jimmy and I love this one most of all.

She's a good pointer and she's really into learning what everything is called. We observe her moving her lips as she tries to make the sounds that we make when we're teaching her new words. Its exciting when she masters a new word or sign and uses it a lot.

Gracie got a cool Radio Flyer trike for Valentine's Day that has a parent's handle with steering capabilities. Her feet don't quite reach the pedals, but she loves loves loves to ride it all over the place. We took it over to Noni and Munts' house so that we could ride it outside up and down the driveway. Oh, she loves it. She also loves to walk her push toy back and forth on their driveway too. We're slowly discovering the joys of being outside. :)

Thats us in a nutshell. I think we've finally narrowed down a date for our Make-a-Wish Photo Session on March 11. We wanted to get it done before she got her new tubes in case she takes some time to recover. Also the possibility exists that we may not be able to put in the new tubes when we take out the old ones. It depends on the size of the hole thats there. We may have to wait for them to heal up and then go in again for the tube placement. I hope not, but it might happen, so we want to do the photos beforehand just in case.

Hope you are all well. Much love.

Saturday, February 14, 2009

The monumental screw-up part 2

Yes, I know. Slacker mommy.

So I gave you the first part of our lovely Shands/Lake Shore story a few weeks ago, and then left you hanging. Sorry about that, loyal fans. :(

So, lets catch up.

I left off at our admission to Wolfson Children's Hospital due to what looked like a contaminated blood sample drawn from Gracie's foot. Well, the next 4 days were a blur of continuous needle pokes for Gracie. It was terrible. Anytime any hospital staff would get near her, she would scream her head off, anticipating another poke. Unfortunately, her fears came true more often than not. Poor baby. As for the original positive culture from Lake Shore, our docs at Wolfson spent quite a bit of time attempting to get more information about the sample, and even the sample itself. They were told by the lab at Lake Shore that the sample was sent to Shands Gainesville for further study, but when our docs called "Big Shands", they had no idea what they were talking about. Somehow this sample had been "misplaced". At this point, our Docs at Wolfson are ready to make a formal complaint about this situation and Shands at Lake Shore sends them copies of the preliminary lab sheet which stated that the blood was drawn intravenously. Now, if you're officially confused by now, I don't blame you. But what that means is that someone lied when they submitted Gracie's blood for culture. I'm also being questioned about the capture method to make sure I know what I am talking about. I'm also officially furious. Shands at Lake Shore will be on the receiving end of this anger on the day a pull a bill from them out of my mailbox. I also plan on inviting them to pay for Gracie's stay at Wolfson's as well. We'll see how it goes and I will certainly keep everyone posted. And I'm sure it will come to no surprise to anyone that we will no longer be taking Gracie to Lake Shore if she runs a fever. We will go straight to Wolfson's from now on. Its just not worth it.

On to other topics.

Gracie continues to blossom and do well despite our minor roadbumps. We are still dealing with our mystery rash, and I am more and more convinced that it is NOT GVHD. Unfortunately, I will have to wait quite a while for confirmation of that because Gracie's biopsy (and ear tube replacement) is scheduled for March 23rd. Yuck! I had no idea it would be so long from now. When we first spoke to Dr. Joyce about this they told us to keep the next few Thursdays available for the procedure so we were thinking it would be pretty quick. I plan on calling our nurse on Monday and finding out if this is really the best we can do. So due to this, we are still on a therapeutic dose of CSA and no plans to wean off yet. Bummer.

Gracie doesn't seem to care much about the CSA issue, since she takes her meds in her formula these days. So she's just hanging out, being cute, and having fun. She's got about 15 or so words she can say, and she signs a little bit as well. We're hoping to cultivate her communication skills quite a bit in the coming months so that we can get her to express herself better and with less frustration. We're also hoping to see her start walking on her own. She's getting close, and I'm hoping it will happen soon. She is definitely a social girl, she loves to smile and wave at people and babble lots and lots. She's had a recent spike in her appetite as well. She's such a sweet baby and I am so proud of her for having such a wonderful disposition despite her circumstances in life. She really is an angel.