Dr. Dabrowski appointment

Dr. Dabrowski is her physical medicine doctor and he is amazing, we love him. He prescribes her braces and PT, OT and ST and anything else we can think of. He can tell how she is doing by just watching her walk. We had our appt. on Monday, March 11, 2013. He noticed right away how tall she is and that she will need new braces for her legs. Her sway in her back is better which means her torso is getting stronger and she doesn't have to stick out her belly as much to balance etc. Her feet and legs seemed really tight and he wants us to do stretches with her. He recommends doing them after a warm bath for up to an hour at a 20 count each leg rotating...if that makes sense?! He also thinks the hot tub will be beneficial to her muscles so we will reduce the temp on that a little and get her in that as soon as it warms up a little. We have her casting for new braces on Thursday. We also noticed her right leg and foot are turning in more than they should be so we will be getting a wrap for that. It will help turn it out the other direction towards the way it is supposed to be. We will also be getting a hip x-ray done to make sure everything is developing the way it should be. So all in all..not the great news like we usually hear but not bad either..we always know it could be worse!

ABC

What a good little singer. She loves to sing and sings herself to sleep most nights! 

Riding her bike

Miss Avery riding her bike. She could not do this last summer. She is getting so strong and can now push the pedals on her own!!

Infusion 46, 2-15-13, Infusion 47, 2-28-13 and Infusion 48 3-15-13

1 Poke on all these infusions. Lots of tears and fighting it though :( She now runs from me when I tell her it is time for infusion. She also has been asking more about it throughout the weeks and dreads it I think. I feel so bad for her and it is really hard to explain to her why she needs it. I will continue to tell her what I have been telling her...that she needs it to play and walk and be a big girl. I think that is all her little mind can understand at this time. Today and most days she lays in front of the tv and watches whatever she wants and she eats whatever she wants too...lol! And that is just the way it is gonna be! She makes friends with Chelsea about half way through the infusion and starts to look at pictures of her nephews and play with her. But that is always on Avery's terms and when she is ready...and Chelsea understands. And Avery is always willing to give goodbye hugs when it is over. She has her own love/hate relationship Chelsea. Chelsea agrees...that is the truth. Thankfully Chelsea does understand and keeps coming back :)