Day 997

Ava has been doing pretty well the last couple of days. She weighs 13.70 kg = 30.20 pounds. She is also climbing on the furniture and sneaking up the stairs all the time. She ate chicken noodle soup, squash and pumpkin ice cream last night for dinner. My little chow hound! Of course that doesn't happen at every feeding and she did spit up her lunch this afternoon. We are awaiting Hurricane Sandy, but thankfully we have a generator to keep her meds cold and her equipment running. Hopefully our nurse can get home safe tonight. Please pray for her safe journey. Ava is also talking quite a bit more and trying to repeat what we are saying. What a joy this is!

I just saw on "Preemie Powers" FB post that Ava is in 2nd place for their contest. Thanks for voting & here's the link to vote again: http://promoshq.wildfireapp.com/website/6/contests/296773/voteable_entries/59726761 We have until Friday to vote and you can vote every day. In case you didn't know, the winner receives a trip to Disneyland with their family. What a gift for our family that would be!

Since I have your attention, I thought it would be nice to start praying for other people that need some prayers. I have written about this young man before, but unfortunately he is still in a coma. He was hit by a car on his bike over a year ago. Please pray that he comes out of his coma asap without any brain damage and is able to walk, eat and enjoy the rest of his life.

Thanking God for Ava's life and praying for Ava's immune system to be strong and for Andrew to awaken to his mom and sister's loving smiles...

Day 990

I spoke with GI in Syracuse today and Ava did well on her emptying scan. Her tummy emptied for the perfect amount of time. We are now able to stop giving her Eyrped and hopefully she will continue to eat and keep down her food. 1 more med down - Yeah! It's so great. Hopefully she no longer has reflux and we can get rid of the Prevacid as well. She is also chewing much better and just loves her mac n' cheese.

Thanking God for Ava's progress and praying that she continues to eat and enjoy life...

Day 986

Today Ava ate cheerios. She did an amazing job chewing them up. In fact, last night Ava ate a hot dog and some mac n' cheese with her friends. All of a sudden now, she seems to be chewing and swallowing her food. It's an incredible miracle.

Ava had an emptying scan done on her tummy on Monday in Rochester. It was supposed to be an hour long scan, but the 50% of the contents of her tummy went through in a half an hour. We were able to go home quite earlier than expected and she only had to be scanned 3 times. We still haven't heard from GI about how it exactly went, but with the contents moving that fast, we are pretty sure it went well. Hopefully we can get off Eryped for that.

We have entered Ava in a contest for "Preemie Power" where she can possibly win a trip to Disney with your votes. Voting starts tomorrow and you can vote once a day. Here is the link: http://promoshq.wildfireapp.com/website/6/contests/296773/voteable_entries/59726761

Thanking God for Ava's amazing progress and praying for her to continue to eat and chew...

Day 981

Today we had a wonderful photo shoot with our friends from "Through the Years" Photography. They blessed us last year around this time with photos of our family. It's amazing the journey we have had in a year. A year ago, Ava was on the vent 24-7 and we were taking off the vent for a couple of seconds to take photos and put it back on quickly. Now she has no need for a vent and doesn't even have a trach! Amazing progress! Praise God! She was running around with her friends and just enjoying life. We couldn't be happier. Below are some photos. Enjoy and Thanks to Through the Years Photography!

Thanking God for friends and for Ava's progress and just thanking God today...

Day 976

Sorry for the delay in getting these posts to you. We have been very busy and we did manage to get sick the last couple of weeks. We got some good news today - Ava doesn't need immunoglobin infusions this winter, unless she is getting ill frequently. We found out they don't believe she needs the Synagis shots during the winter to fight against RSV, because although her test was negative, her numbers for the psuedococcal (I think this is correct spelling ;) ) showed that her body reacted. Her IgG numbers went up from 509 to 545 (this is still low for her age) and IgA from 20.9 to 21.6 (also low for her age). We still need to be very careful with her but we can also get out and have a little more fun than last year.

We did take Ava to Pumpkinville and she was able to stand next to the Pumpkinville sign that measures their height. It was incredible to have that experience when a year ago Ava was on her ventilator. Ava had such a fun time and has such a joyful laugh. She gives us all amazing joy.

Thanking God for Ava's laugh and praying for Ava to eat solids...