Wednesday, October 11, 2017

LONG overdue update...Lung and GI Check up

Hello Ava friends and followers! It's been a LONG time since I posted and update. We had a wonderful Summer. I'm so happy to finally feel cooler weather! Ava's health has been excellent. I hate even typing that as it might bring the germ bugs our way but HEY I'm so thrilled she is growing and becoming her own little lady.

In August she turned 11. I talked her into doing a Fairy Photo shoot. She is always up for any of my weird ideas. I think she made a perfect fairy!



Her birthday cake.


Most of you know I started a facebook page to help CDH parents in 2011. It has brought so many amazing families together to share their stories of HOPE! I'm so proud of the page. Yes my life is busy. These days I am watching my sister, Mary's 4 year old twins. They are in Preschool so I get a few mornings to myself. My nephew has Autism. So yet another challenge I've come to get to know and to accept. It has brought a lot of same emotions that CDH bought in the early days. The unknowns and the what if's... you could go on and on. I trust that through this God has a plan and that the little man whom I adore will come through this loved and totally accepted just as Ava is!

Here are the twins on their first day of 2nd year Preschool. They have come a long way. These two are like my 4th and 5th children. I love them just as much as my own. I'm so happy they are in our lives. Their mom works so hard as a Postal carrier and she needs my help during the days. It's a whirl wins sometimes but ALL worth it!



So talking about my CDH facebook page Ava and I went "LIVE" on it a few months ago. You may want to check that out. She is so confident and so carefree! I've always loved that about her! If you go to our page you will find it pinned as one of the first posts you will see. We talk about her congenital diaphragmatic hernia journey and also her complications. We even answer questions. We had a great time. I LOVE putting our face to our page! https://www.facebook.com/raisingcdhkids/

This Summer we took a small get away to a Royals game in Kansas City. The entire family went. Lexis is now 19. Emeline is 17 and Ava is 11. We had so much fun. We all sported our Royals outfits. What a treat!










Ava with the trophies!! Her dad is a TRUE Royals fan... so we all join in!


Brian and I celebrated our 22nd wedding anniversary. Ava was our photographer. She did an amazing job. She may take over my work in the future! We are so lucky to be with each other after all these years. Marriage is hard. It's very stressful with a sick child. We managed it like it was butter.... we slide through. We decided to wear our wedding attire. I have lost 55 pounds and fit perfectly into my wedding dress. What a neat thing to be able to do, huh?



This was our old photo with our new photo. Oh the wonders of Photoshop! Such fun. We haven't changed a bit. ;)


Also this Summer Ava was in a play. I was shocked that she was not afraid to be in front of a large audience. So we know that acting will remain in her future. We are so proud of her. 




Ava had a check up appointment with her Pulmonary nurse practitioner and also one with her GI doctor. Ava still deals with Asthma (during colds) and reflux everyday. She is still on Prevacid and her daily Symbicort. We also did a "live" on our page when she did her lung function test. We know that many parents want to know what lies in the future for their CDHer and we are glad to give them a glimpse. And also we have older survivors that like to see how things are done currently in the medical field. She was happy to have people follow her along. The University of Iowa Children's hospital did a major remodel. If you haven't heard about their half time wave to the patients... well please read. It is SO awesome! I remember when Ava spent so much time in the hospital we'd try to go get a glimpse of the game on game days. However you couldn't see it at all. NOW the children's hospital is up super high and you can watch in over the game. The game is stopped at halftime I believe so that the fans and team can all turn and wave to the children in the hospital!! http://www.ncaa.com/news/football/article/2017-09-21/iowa-football-fans-wave-childrens-hospital-hawkeyes-newest

Here we are waiting for her appointments to start. This was September 25th. She of course got all good news at these appointments. The doctors were thrilled with her progress. She is growing so much. She is 5 foot 1 inch tall and weighs 68 pounds. She grows on her own curve. She is almost as tall as me... YIKES! It won't be long.



Ava also sings in our town's choir. She has been practicing and will be preforming in December. We are so happy that she is able to do normal things just like every other 5th grader her age! She's also a crossing guard at school. She does that job on Mondays. I still can't believe this is her last year of elementary school. Where does the time go, seriously?

Carepages... which I started journal-ling Ava's story at birth has now said they will no longer offer the blogger's service. I'm so thankful I started Ava's blog many years ago. They did give me her entire carepage I can download so I was thrilled. A lot of writing and memories right there!

As always thanks so much for your continued love and prayers. We feel the love and support. So thrilled to be filling you in on all the wonderful and amazing things our family has accomplished.

~Terri Helmick