Number's Game

What a great day we had today! Arianna is just blossoming into such a beautiful little girl. It’s kind of sad because she’s not that little baby anymore, but a rambunctious toddler. Her walking is improving and she is starting to do the cutest little dance when she hears music. I have even been thinking about when to have another baby because Arianna fills my life with so much joy. But right now is not the time to be having another baby so we’ll hold off for a few more years. I think I give Robert grey hairs just talking about it. Oh well….I can’t help it.

So yesterday I kept her on oxygen all day like I planned but this afternoon I had to change her tape so I took off the cannula to give her a bath and when I rechecked her sats she was 94! I waited another 15 minutes and she was 93-94 so I left the cannula off. We even took a quick trip to the bank just to get Arianna out of the house for a minute. When we got home she fell right to sleep and during her nap she stayed in the low 90’s so I decided to just keep an eye on her and leave the O2 off. I did notice her heart rate was higher than it normally is with the O2, but that is to be expected since her heart has to work harder to supply her body oxygen. Once she woke up it was no stopping her from there, she was all over the place. Man…oh man…she is getting quick! It was so good to let her run around and not worry about the tube holding her back. She stayed off oxygen for 8 HOURS!!! She didn’t eat much today but I think that’s because she is working on another tooth. When she fell asleep tonight I checked her sats and she was 89 so we hook the O2 back up. Right now she is resting on half a liter and her sats are at 95. It’s such a numbers game with this O2. It really can drive me crazy at times. Sometimes I think I can overanalyze things but I feel like I have to be this way….hello, she’s my daughter.

Tomorrow morning we have an appointment with the geneticist. Last time we saw him Arianna was just diagnosed and I had no idea what DiGeorge Syndrome was about. I really don’t know what this appointment will be like but I’m sure I’ll be telling about all the things we’ve gone through with Arianna. Who knows, maybe he can shine some light on this O2 situation. Then…we are meeting with the speech therapist for our initial consult. She is coming to the house so we just have to make sure we’re back in time for that. Hopefully I get a good vibe from her, since our other therapist has been great. This is the first time working with someone that is apart of an organization, instead of an independent therapist. I have built such a strong relationship with our OT and I’m hoping we can build the same type of relationship with this therapist. They really do become like friends and Arianna really enjoys their visits. I’ll update after we get done with everything and let you all know how things went.