Saturday, September 29, 2012

A Rough Week.

Hello Ava friends! Ava is battling a cold. It started with a cough on Monday. We started her Albuterol inhaler right away. By Monday night the cough had gotten much worse. I took her to the doctor Tuesday and was told it was probably just a virus as nothing looked infected. Wednesday morning Ava woke with a fever. I called her doctor again and she prescribed an antibiotic. By Thursday Ava was looking very bad.  Her eyes were dark and she was very tired. Her oxygen levels were running between 96-99. Not too bad but also not normal for Ava. However with a cold anyone can run a little low. Once again we took her to the doctor and she said Bronchitis. “Lovely!”  I worry extra with her as we know things can go from bad to worse in just one day. I called her Pulmonologist in Iowa City and they told me to start her on her Prednisone. (This is a very high dose of Steroids. It helps get rid of the swelling and inflammation in the lungs.) Friday afternoon she finally started to feel better. Her eyes perked up and her smile returned. She is still coughing but it is getting better. Her oxygen stats are still not normal but I hope soon they would be better as well.

Here she was on Thursday.



She’s been out of school since Monday. She is missing her friends… yep you heard that right! We’ve been keeping up with her homework. She loves doing it at home.

She always keep me guessing.

She got a huge thrill today when we got the mail. A package was addressed to her. It was from the “Card Cupids”. I’m not sure who sent in Ava’s name but we THANK YOU for Blessing her day. It was perfect timing today! The cards were from people all around the world. They were gorgeous cards. All special and unique with wonderful messages inside. If you haven’t heard of this nonprofit group please go check them out! Here are a few of the cards she got.

And here was the collection of all of the cards.

                                                    Thank you, Nancy from South Dakota.

                                                         Thank you, Lori from Maryland.

Thank you, Gina from Tennessee.

Thank you, Kittie from Arizona.

Thank you, Marilyn from Virginia

                                                        Thank you, Kittie from Arizona.

Thank you, Michele in Utah

Thank you, Susan from Georgia.

Thank you, Debbie from Kentucky.

Thank you, Hattie from South Carolina

Thank you, Mary from California.

Thank you, Karen from Tennessee.

Thank you, Sharon from Michigan

THANK you everyone. What a beautiful lovely gift... all these wonderful creative cards. We will cherish these forever!!


Please keep little Ava in your thoughts and prayers. We are hoping she is over the worst. We love that her smile is back. With school it is so hard to keep the germs away. The steroids she is on makes her immune system very slow and non-existent. Her teacher informed us that the stomach flu had hit her class. So we want her immune system in check before sending her back. Thanks everyone for your thoughts and prayers. She needs them!


Tuesday, September 11, 2012

Birthday and Tests

Hello Ava friends. We’ve been busy. Ava has been doing better about school. She still occasionally has her days when she doesn’t want to go but for the most part she likes school. We’ve worked out that she comes home each day for lunch. It tends to help split her day up so it’s not so long. I like it because I have a chance to look at her and see if she is having any issues or health problems.

Here is Ava in her birthday outfit before school.

Ava is 6 today!

And her birthday bow I almost forgot to make!

Ava is 6

Ava celebrated her 6th birthday on August 31st. We tend to keep her parties simple. We invited close family and she had a great night. It is hard to believe it was 6 years ago she fought to stay alive at Children’s Hospital of Philadelphia. Some birthdays hit me harder than others. This year was a really tough day for me. I had to keep reminding myself of how GREAT and AMAZING she is doing. God has been good to us!

Aunt Marsha, (Brian’s sister) made this beautiful cake for Ava. (We are getting pretty excited out our Disney World trip from Make-A Wish this coming October!)

Cake 7737

Grandma Helmick got her this life sized Justin Bieber.

Bieber 7740

SO now he’s just part of the family!

family 7747

Today we finished Ava’s CDH yearly check-up. She is growing so fast. Her height is 3’11.8 “ and her weight is 39.9 pounds.

7795 Scale

7799 height

Her blood pressure was 105/61. Her pulse was 82 and her respirations were 24.

7802 Blood pressure

She saw her Pulmonary Doctor whom I really love. Dr. Ahren’s listens to my concerns and really looks Ava over well. We did a Pulmonary Lung Function Test on Ava. It is her first real one. (She had an infant one before she left CHOP at 2 months old but she was sedated.) She did really well.

The older the she get the more accurate the results. The key is to take a HUGE deep breath in and blow the air out HARD for 8 seconds. THAT is a hard thing to do even for an adult. Ava’s exhale was only for a second and a half so we definitely know she can do better as she gets older.

7810 Lung Function test 2012

Here is the booth she goes in. She blew an 8! A 10 is a normal reading. This means that her lungs are not normal but not too bad. The doctor explained that her right lung probably does most of the work. We were debating doing a QV scan. This determines the blood flow through your lungs. We believe that her left lung has decreased blood flow due to her CDH. The xrays and the tests she took in the PICU a few years ago leads the doctors to speculate about her left lung function. Right now this test will do us no good. It won’t change how we manage her colds. I’m afraid if we do get the scan and it shows a really bad left lung it will give me anxiety. So for now we will just leave it alone.

7809 Test

She also had an EKG to see how her heart and lungs are doing.

7814 EKG test

All in all a pretty great day! I’m so proud of her. AND she got the whole day of school off. Can’t beat that can ya?

Thanks for all your love, prayers and support. We love that so many still follow Ava and our CDH journey. We always take the bad, ugly, unknown, scary, and try to see the good. Ava is healthy and we thank God for this!

~Terri Helmick