Home and Check-up

So we made it home fine from St. Louis. We had a super time with my sisters. Ava had a follow-up surgical appointment today. All is going well. I asked to keep the central line for a few extra months just for precautionary measures. I’m praying this is the end of all surgeries or for a while but we still have to be safe.

She is finally on the growth chart. She is now 28 pounds. That means she is 25% for weight and 75% for length…go figure! We are going to wean her off tpn this week. I will just have to flush her line once a day and keep her dressings changed just as always. Josh was happy with how she looked. Were not able to see doctor Shilyanski…he was just too busy and I didn’t want to wait any longer. We had already waited a whole hour….if anything God is teaching me patience! Here are the girls at the doctors today.

Monday we went to the St. Louis Zoo with my sister Amanda and her kids. Ava was simply in Heaven. She enjoyed it so much. I am so glad we took a chance and went away.

Blain, Abby, Lexis, Ava, Emeline and Jaz

AND who knew Ava was a musician. She had a blast this night!

Perhaps she will be a singer. She has never thrived attention but Sunday night she DID. It was so great to see this side of her. We all had so much fun. Here is me and two of my sisters.

Again thanks for your continued prayers for Ava. We are loving how well she is doing.

~Terri

~Happy 4th of July!~

Hello Ava fans! We are loving our “mini vacation” at my sister and her husband’s house in St. Louis. Ava is really having the best time of her life. If I think too hard about how normal she is I will break down I’m sure of it. She is trotting everywhere and has really let her guard down. The only thing I have noticed is that she still walks like an old lady. She takes her time and watches her every step on the ground. I suppose that is she needs to do to feel safe.

Here is a few pictures of Thursday after we got here. Amanda and Jason (my sister and brother in law) have made a gorgeous pond in their backyard, with a water fall. It is just beautiful and we are really enjoying it. (We have a small pond at home with 9 fish but nothing like this one!) The have 2 huge fish named “Elvis” and “Priscilla”. Plus a whole bunch more. Her pond plants well lets just say I am super jealous!

 

The release of “Prisilla” by Jason and Amanda.

 

Sister love! She missed her sisters for the two days before we got here.

The relaxing sound of the waterfall just took me away! The kids love to pet the fish. They come right up and let them feel them!

Yesterday we went to my other sister Tina and her husband’s house. What a great celebration we had! We were leary of the forecast for today so we just went ahead and did it yesterday. So glad we did. Here is Ava with my parents.

Mr. Freddy you are just too cute!

And of course Tina’s dog, Patches!

I LOVE this picture.

Miss Ava loved this game!

She actually got pretty good towards the end of the night!

Tree house fun!

“Alright you guys, these fireworks are WAY too loud!”

Pinata anyone?

“We MUST have a wagon ride!”

And we had to have some dancing!

A refreshing drink of Ava’s favorite……Pop!

Cousin time in the P O O L!

“Smore’s for certain!”

“Sparkles to end the evening!”

“Happy 4th of July to EVERYONE!”

God Bless You ALL!

~The Helmick’s

On our WAY.

Ava this morning. The eyes never lie….. see how beautiful her eyes look?

Well all is going fabulous here at the Helmick house. We are finally getting into a path of normalcy. I can’t explain how wonderful it is not to worry quite so much about Ava health. Yes she is still on TPN (IV nutrition) for 12 hours a day. We start it about 9 pm and runs until 9 am. At night we also feed her through the button in her stomach. We are up to 2 cans which total 500 calories!! THIS guys is a huge accomplishment for Ava! Last night I had her rate set at 50 ml’s an hour. That is the highest I’ve ever gone and she tolerated it so well!

She is gaining weight and feels heavier for sure! She weighed 27 pounds yesterday. I was so happy we did a weight dance! Huh that is a new one…;)

Her tummy well see for yourself. It is so small. It measures 49 cm! Remember in the hospital before surgery it measured 59 cm’s? The scar is healing so good. Her last scab came off a few days ago.

AND standing up so you can see that too.

SO she is doing so well I thought we might as well get out of here. The girls are already at my sister Amanda’s in St. Louis so the decision was made that it is time for us to bust out. I’d like to take her to the Zoo for sure. Then to my other sister Tina’s house nearby on the 4th. We really need to celebrate. She has overcome so much in her little body. We still tend to wonder but for now we want to just live this up! She needs to be TWO and not a sick girl. We must be careful but I think we can have both worlds for a few days at least.

I can’t believe next month she turns THREE! How truly AMAZING is that? I am so proud of her. She just goes with whatever is thrown at her. As I said we are thrilled at how super she is doing and knows God is blessing us beyond measure.  Please say a prayer for us as we travel today to Missouri. I am so excited to see my family and have Ava experience normal things!

Princess Ava and Queen Terri

It is official, Ava was crowned Princess…. her real title….  “National Little Miss Sweetheart!” She has been through so much with her birth defect and I thought this was a great way to celebrate her uniqueness.

I also got crowned, “National Ms. Heart of the Home” for all my work with Ava’s birth defect, Congenital Diaphragmatic Hernia.

It was given to us by  Coronet Pageants and we are so honored. If you have time please check them out. So yesterday Ava and I did lots of pictures. Enjoy