Ballerina Avery

Ballerina Avery

Friday, February 24, 2012

"EYE" Love you!

So I think Avery officially has a specialist for everything..including her eyes. We met with Dr. John D.  Roarty M.D.at Children's Hospital on Wednesday for an eye check up. Avery was perfect. I was worried because all along they told me it was gonna be a 3 hr appt. YIKES! How would I keep a 2 yr old busy for 3 hours? Food of course! Well it ended up being shorter because she was so cooperative! That's my girl! Avery's eyes look great according to Dr. Roarty. She has 20/25 vision with maybe a tiny bit (very minimal)amt of nearsightedness. He said no glasses or anything now if anything it would be in kindergarten or 1st grade maybe when she needs to see at a distance. All the tissues in/around her eyes look perfectly healthy. He will see us in a year! WOHOOOOOO! How wonderful to get a good report!

Saturday, February 18, 2012

Avery's hurt leg

Last week Avery and Mya were "exercising" and Mya wanted Avery to put on her other pair of exercise shoes. So we put them on her and of course they were huge. Anyways she ended up tripping and twisting or spraining her foot/ankle. We let it be that night then in the morning she was still limping so I emailed Dr. Dabrowski. He called me and had me touch in a few spots and Avery had no reaction so he didn't think it was broken. He said we could wait, go to the pediatrician, or come see him. We decided to wait it out for a few days. She didn't seem to be in pain...just limping a little. After the weekend it didn't seem to be getting much better. So again I emailed Dr. D and he said I should bring her in and she needs to get an xray. We got an xray on Tuesday and the doctor there said it was negative(for breaks I assume)We had an appt. with Dr. D on Wednesday. He checked Avery out and he thinks it is just a sprain and with Pompe it will take longer to heal. Avery seems to be doing better. We keep her braces on a little more than normal for the support. It doesn't slow Avery down at all..she is still doing great and trying to keep up with Mya.

a few of the latest videos

Infusion 20, 2-17-12

THE BEST INFUSION EVER! Avery did great! Grandma Lorraine and Mommy went with Avery. She didn't shed a single tear when the put the IV in and they got it on the first try! She wasn't fussy and grumpy like she was last time. I feel like she is starting to understand more. We talked before the infusion about what was gonna happen. We talked about who was gonna be there. She showed me the tops of her hands and said ouchie, Avery cry. I told her everything will be ok... It just hurts for a minute and we have to do it so you can get stronger. I think we will just keep talking about infusion and what to expect.

Tuesday, February 7, 2012

Infusion 19, 2.7.12(supposed to be on 2.3.12)

Mom and Grandma Lorraine took Avery today. Avery was supposed to be infused Friday the 3rd of February but was sick with RSV. So we had to retest her for RSV on Monday of this week and if it was negative we would do it Tuesday. Well, it was negative so today was the day. It was an average day. Avery was a little grumpier than normal. Avery is starting to fight it more. She doesn't even want Karen to check her arms for good veins. And the last few times at Dr. Haddad's(her pediatrician) it has been this way too. So out of character for her. I hope it is a phase..but also understand if it is not. If I was in her situation I would be GRUMPY too! She would be so much better off if she would just sleep there...but...she won't! She constantly wants to be on the go and it is hard with an IV attached to her arm. Plus, she doesn't understand the concept of staying put and keeping her arm straight so the machine doesn't beep. Anyway...we got through another one! So life is good. We also get to keep on the schedule we are currently on which is a good thing :)