Infusion 22, 3-16-12

Today went great. It started out foggy when we left but cleared up quick. I was worried I would be driving in horrible fog in downtown Detroit! Avery did amazing. Karen got the IV first try and Avery only had one little tear that had to be wiped away.  The minute we mention it is time to get her IV she starts getting anxiety and starts fussing :( Makes me sad but she was a trooper! She played babies with Grandma for quite awhile, ate doritos and goldfish, yogurt, grapes, raspberries and drank juice. We asked her what she wanted for lunch and she said pizza...:) so subway pizza she had! We watched Dora, Elmo, Barney and deleted scenes from Lady and the Tramp(because I didn't check the case before I left and the movie was in the DVD player..at home) I checked all the cases but that one. Live and learn. She was sad but got over it! ha ha! I am proud to be this amazing little girls Mommy! She is stronger than I can/could ever imagine being! She has determination like no one I've ever met! For her there is no option but to be a normal 2 year old. And she will not give up! Just when I say or think she probably can't do that(like walk down from the patio, or walk sideways on a low balance beam at therapy)without my help..she does it and proves me wrong. I have never ever been so happy to be proved wrong in my life! The PT or OT give us things to work on and we do them with her! Then the next time at therapy she makes me proud and does it! For example, walking backwards. She tried last week and couldn't quite get it. So Wade, Mya and I practiced with her this past weekend and Wade had her pulling the wagon outside. So when Miss Becky said lets walk backwards Avery..she did it and did it with a huge grin on her face while she kinda looked over her shoulder at Becky. She knew she could do it..she just needed to practice! I love that kiddo more than words can say.

over a week ago....

It has been over a week now since Miss A got her new orthotics. They are pink, a little higher on her leg and have hinges. When she put them on for the first time she was like a noodle. She was swaying front to back and was just trying to keep her legs steady. She reminded me of those blow up people that businesses use to advertise...the one's where the air blows from below and they dance all over. It didn't take her long to adjust and do great in them. She now has to use so many muscles, weak muscles that she never had to use before. These braces make her walk like a normal 2 year old. She adjusted so fast and I am so proud of her. Within the last week she has become a different kid. She now walks off the patio without hesitation and keeps on going. This is a step that you and I wouldn't even notice probably. It is/was just enough for her to have to step down. She now is speeding up her walking pace and at times tries to run :) So adorable. One day we were walking into school therapy and we passed her occupational therapist and her friend and waved and said hi. Later on during Avery's session Pat(the OT) said that her friend asked her..what are you seeing her for..she looks perfect! HAPPY MOMMY! Of course she is perfect in my eyes but to have a perfect stranger say it makes my heart skip a beat. Avery is one special little girl!

So with new orthotics comes new shoes. PAIN IN THE BUTTTTT!!!!! Big time. The braces are big and bulky and shoes are not made to accommodate them. We spent over an hour the day we got them, at For Feets Sake in Milford trying on shoes. BTW they were great with us! Super patient, helpful and they give us 10% off every time! That will make me go back. It makes the price of the shoes so worth it! And I LOVE supporting local businesses if we can. It made for a really long afternoon. A 2 yr old and a 4 yr old at lunch time and nap time...holy smokes! But we had to have something to get us through. Bottom line is we found a pair of tennis shoes that are perfect! We also found some closed toed sandals that we are getting the Velcro adjusted on so they will fit better. I am in the market for one or two more pairs then she will be set!!  WE ARE SO FORTUNATE: to have Avery, that I can stay home and take care of my girls, that Wade is employed by an amazing company and has great insurance, we have amazing friends and family and the list goes on and on and on! 

P.S. food for thought..kinda,....be thankful that you and/or your kids can go to the store and buy normal shoes at normal prices that look normal. I now know how difficult it can be just to find one pair that will work :)

Infusion 21, 3-2-12

Rough one today. It started out ok this morning. The trip to Children's was fine and everything. The lady that checked us in was a little crazy but no biggie! The first try with the IV didn't take..so to speak. So another try...and it worked without too many tears. But about 3/4 of the way through Avery was saying ouchie so I had Karen(RN) take a look at it. It is rare that Avery complains during her infusions so I kinda thought something was wrong with the IV. Sure enough it was more than half out. ERRRRR! Karen tried to push it back in because we were so close to being finished but it didn't work and Avery was just screaming. So out it had to come. What does that mean for us...another IV must be put in. We have to get every ounce of the close to $15,000 drug plus we need to flush with saline at the end. Avery was not a happy camper. Screaming and crying Karen got it on the first try. Avery was exhausted so she fell asleep. She is just the bravest little girl I know. I looked at Lorraine and said "I am so lucky to have this littler girl in my life" tears of course too! I wish every single day I could take this disease from her.