Ballerina Avery

Ballerina Avery

Friday, July 27, 2012

Infusion 31, 7-19-12

Avery chillin!

Avery did amazing like always! She had a few tears with the poke but it was fine once the IV was in. We played, watched movies and ate lots of snacks of course! Mya got to be here for the second half of the infusion. It was Mya's first time seeing Avery at an infusion or anything having to do with Pompe for that matter. Wade and I thought we would wait til the time was right to introduce her to the visual part of it. We are not, or never will be sure if it was the right time but I think Mya did ok. Mya asked lots of questions about the actual IV and why Avery needed the meds and what they do for Avery. Why was Avery wearing a backpack and what was in it..etc. I did my best to answer honestly at a level she could understand. When the time came for the infusion to be over Chelsea had to take out the IV, so I have to hold Avery "down" and keep her still while she does that. This is where it would have been great to have Wade here to hold Mya and explain what was happening. For Avery the worst part of the whole infusion is usually taking the tape off that is wrapped around her arm. Completely understandable! So Avery was screaming/crying while Chelsea was doing that and I was holding her. :( But I looked at Mya and saw her bottom lip start to quiver and I knew at that moment...we rushed it! I couldn't go to Mya and hold her and tell her everything was gonna be ok. That was like putting a whole in my heart. I had to keep Avery still. I said to Mya, "Avery is ok, it just hurts when we take the tape off." Mya took off running and was wiping away tears as she hid behind the chair. WOW it is difficult to explain to a 4 year old. We have been telling Mya as much as "needed" along the way. Mya knows that Avery is different from her and other kids and that she gets an infusion and that she gets to go to G and G Nagelkirk's during the infusion. Wade , myself and Suj our genetics counselor have agreed to do what we think is best and fill Mya in as time goes on. As we get more adjusted, Avery gets more adjusted and as Mya matures and can understand. So for now we tell her what her little mind can understand. When the time comes and Mya asks more questions we will answer as openly and honestly as we can. We will never lie to her or Avery about anything that is/will happen with this horrible disease. I think lying to them..would in turn be lying to ourselves. THIS IS A REALITY and we will face it as it comes! Mya didn't want to talk about it and why she cried, and won't speak of it to Wade or Mommy. I hope as time goes on and she is around for more infusions she can understand the positives of doing the infusion. Until then we will do our best for Mya to not be around when the IV comes in and goes out. And who knows....that could change at the next infusion.
Chelsea playing with the girls on her phone

Playing in the water after infusion during the 2 hour wait afterwards

Thursday, July 12, 2012

It gets me through the day!

Some of the things that make the days a little easier!
kisses

cupcake faces

painted pigs

hugs

Thursday, July 5, 2012

livin life!

Avery as proud as a peacock sitting with all her friends

Too big for her britches..standing on one leg while trying to get in the hot tub....now that takes muscle!

All the way to the top....several times! So determined!

Infusion 30, 7-5-12

Our 2nd home infusion and it went great. We had a little problem at the beginning because Chelsea forgot her stethoscope to check Avery's blood pressure and Wades cuff was too big. So I asked our neighbor Brandy across the street(she is and ER nurse at McLaren in Flint)and she didn't have one either BUT she had a smaller battery operated cuff we used on Avery's leg. It worked out and we got started at 10:35a and were done with the Lumizyme by 2:35. It went really fast today it seemed like. Avery watched tv and ate everything in site like always! She also played nurse with Chelsea...taking her temp and blood pressure etc. That kept her occupied for hours :) Poor Chelsea was probably about to go crazy listening to Barney and Elmo and playing Dr all day..haha! She said she didn't care! Who would I be to argue! All in all another great infusion and another day towards keeping our little beauty, Avery MOVING! This drug is amazing!