Sunday, December 28, 2008

Try, try try again.

This is Ava right after getting out of the tub this morning. Try to hold this girl down to get her dressed. Now that is a challenge!

This is a short video of Ava getting dressed after her bath.

So poor Ava just tries her hardest to eat and keep things down but sometimes well it doesn't stay down. Today she ate pasta and alfredo. One of her favs! She tried twice and then wanted more after the second time it came up. I told her no and she cried and cried. What must one do?

Keep praying for Ava tummy and bowels to start working together. She has been throwing up clear or yellow. This means it is only her stomach contents and not her entestines. This is progress!

I thought I would let you all know how Lexis's surgery went on Friday. She did super! I was so proud of her.

This was before surgery as you can tell!

So the day after Christmas Lexis had her tonsils out. It went a lot better than I expected. She was very calm and actually excited about the surgery. I think she was most happy about having "room service". Funny girl, what she forgot to think about was that she couldn't eat much liquids and soft foods only! So since pictures are worth 1,000 words here they are.

Again before surgery in her room before going to the waiting room.

This is Dr. Lyons talking to Lex before her surgery. He is so funny!

Group photo before they took her off to surgery. Grandma Helmick, Grandma Diercks, Lexis and Me.

Lexis is smiling just minutes before getting put under.

It will all be over soon Lex.

Here is what they took out. Uhhhh!

Lexis waking up in recovery. My poor Lex. I knew how she felt....MISERABLE.

She attempted to eat about 3 hours after surgery. Opps it didn't stay down. Second times a charm, right?

Her room mate was also having her tonsils removed too. Well after about 3 hours she wanted to go home. Lexis ears perked up and asked me if she could go home too. WE asked the nurse and she said, "Sure if you are feeling okay." She jumped up and then that is when she got sick. So we stayed about another 2 hours then she was discharged. This was when Heather took out her IV.

When we got home I gave her another dose of her pain medicine. It made her very sick so we decided to stick to Tylenol and Motrin. She has very little pain which is very good! She has been playing her guitar hereo she got for Christmas. That sure takes her mind off it all!

So all in all we are doing okay. Keep us in your prayers. I hope Lexis keeps recovering well and has no complications. She is pretty excited about getting a week of gym off at school. If only life were that simple!


Thursday, December 25, 2008

"Merry Christmas!"

Wow we have had a really great Christmas. The girls have gotten many wonderful gifts. I think our tree has never seen that many gifts at one time EVER! We were blessed! Ava loved unwrapping presents but after about 5 she got a little bored. Who wouldn't laugh at that? I think I'll just post some of my favorite moments.

This is all of Ava's Christmas gifts!

Emeline's goodies!

This is all of Lexis's gifts!

Miss Cutsy, Tutsy!

There's a new singer in this family!

WE may just have a new band here too!

She can play the guitar too!

So now you know how our family Christmas went....Spectacular! I made a lunch and it was very good. Ham, potatoes, sweet potatoes, mac and cheese and Holiday punch. Ava ate a little home=made mac and cheese and kept that down, so that was good!

Thanks to all our followers. I hope you all had a great day. Today Jesus was born and that my friends was a miracle right there!

"Merry Christmas to ALL!

~The Helmick's

Wednesday, December 24, 2008

"You'd better watch out!"

This was her reaction when I told her she had to wait until tomorrow to open her presents!

So can you believe it is Christmas Eve? Where has the year gone? The girls are all getting ready for Santa Claus. Lexis is questioning whether he is real or not and I'm not saying a word. I'm just so thrilled that we are all home. I can't help but thank God over and over for how well Ava has been doing. Yes she is still quite sick but she sure is a happy girl. I ended up letting Ava open one of her presents today and boy did she smile!

Okay so all you that want to see, I thought I would show you a little progress of Ava's open stomach. Kinda our Christmas Miracle, huh?

This first one was after her first surgery. (October 6th) They "glued" her shut but then she got a severe infection and an abcess so they had to open her incision.

This second one is from October 20th. This was when they first had to leave her tummy open. We were very shocked at what we saw.

This was taken on October 21st. Her third surgery and as you can see this is when she got the wound vac to help with healing.

This was the first dressing change after getting the wound vac. Her stomach drain is still in place. (October 23rd)

This one was taken on October 29th as you can see her opening is very large.

This was taken November 5th.

This is the wound vac over the opening on Novenber 8th.

This one was taken on November 14th.

November 21st. We changed this one at home.

This is December 1, 2008

I'm skipping ahead to December 14th. As you can see it is geting smaller.

December 22nd.

And so now here is today's picture.

So you can see the great progression. She is slowly but surely closing up. They will have to do surgery on her stomach to repair her intestines but we still are not sure of the date. The swallow study test showed inside progression as well but I know she has a parcial obstruction because of the fact that she is still throwing up dark green bile that smells like stool. I hate that she has to go through all of this. Poor baby! I can only pray that someday this will all be behind us.

I want to run down my list of thank you's if I could. So to all these wonderful people a HUGE THANK YOU! Kirsten from C.O.L.E's prayer team for the card and Ava stickers. They were precious and of course Ava's favorite! Nicole from Burlington for our family Christmas presents. We love all the gifts. It was so thoughtful of you to think about our family! Liz and Shane from California for the Christmas gifts for the girls. You guys well I tear up when I think of our wonderful friendship. We will meet one day! Amber and Sienna for the gifts of videos, stickers and books. They are already being put to good use! And to our friends George, Stacie, and Addie from Philadelphia. We miss you guy so much. When I spoke to you about our Christmas this year you guys came to our rescue. We truly love you guys like family!

Again to all these wonderful ~Angels~ in our life we love and appreciate all you did for us to make this Christmas extra special!

To all our followers and Ava Fans, WE LOVE YOU! Have a Blessed Christmas Holiday!

God has blessed us with many spectacular miracles this year and we love Him for it!

~The Helmick's

Sunday, December 21, 2008

Sweet Little Jesus Boy

Hello to you all! We are well here I just wanted to pop on to share one of my many talents. So if you know anything about me ~ Lexis, Emeline and Ava's Mommy you would know my favorite thing in the world to do is SING! I've been singing since I was old enough to talk. That is mostly how I get through life. I take an obstacle or journey and I add music. I suppose that is the reason I wrote the song about Ava's and her friend's cdh, "Little Angels" I wanted to people to identify with what I went through. I want to shout out in my own voice, "Listen to me I have something to tell!" So this morning I woke and I was just thanking God for all that was around me when a thought popped into my head. I am going to get up and record one of my favorite Christmas songs. The name of it is, "Sweet Little Jesus Boy."

God really has blessed us far beyond measure. I remember as though it was yesterday getting the news from my OB doctor that Ava's chance of survival at birth was only 20-30%. I felt as though my world was coming crashing down around me and I had no where to hide. I prayed to God to give me the strength to face the unknown. I didn't realize what I was asking, such a large-scaled task. But through it all I've learned to trust in Him and His goodness and mercy. At times I had to beg Him to show me His presence. Have you ever been so troubled or down that you lost sight of WHO was in control? The neat part is that God knows our hearts even when we are too defeated or tired to call on Him. The road looks bleak and we just don't know if what we want is what He wants. It's so difficult to give your whole heart to Him. I ask you today, Does Jesus have you? Are you willing to let Him carry your burdens and your pain? He loves you and He wants to if only you will ask Him!

He paid the ultimate price. His son. I leave you with me singing, "Sweet Little Jesus Boy"

Happy Holidays!

~The Helmick's

Saturday, December 20, 2008

Sleigh fun!

Today we took Ava out in the snow. They cancelled school because of a snow/ice storm we got the night before. The roads were covered in ice. Lexis and Emeline were sledding down the front steps and hills! Ava was sad looking out the door so we decided to let her join in on the fun. As you can see she was all smiles!

Here is a video of her sleigh fun. The music is "Jingle bells" and it fits perfectly!

Ava is done with her antibiotic, Flagyl. I'm not sure it helped but one thing I did noticed is that her heart rate got all the way down to 114 beats per minute while she was sleeping. This is "great" for Miss Ava. Normally when she sleeps it runs for 130-160. (Not kidding at all here.) Plus she has been SLEEPING! Last night she slept 8 YES 8 hours all in a row! If you know me you know what a "celebration" this truly IS! She has never slept more than 6 hours before EVER!(I know and she is 2.) So as you can imagine I feel really good today! Last night as Brian and I was changing her Hicmann line (central line for her IV)dressing she fell fast asleep. That never happens. Well it was her Daddy's fault. He never put her down for her nap of the day. His reasoning, "She wasn't tired!" I had to take Lexis to the ENT (throat doc) to get everything lined up for her surgery. I was a little grossed out by all the explanation of what was going to happen. See I had to have my tonsils out when I was 18 and it was very painful and I remember everything. I just hope she has an easier time that I did. So needless to say she was super tired last night.

She threw up four times yesterday and all were dark green, which means she is still bringing up intestinal bile. I know they tell me that this is normal with all she went through but I'm starting to get concerned it could be something else. But to add something good I made Goolosh for super and she loved the pasta but within about 5 minutes it all came back up. I went to take away her bowl and she held it tight and shook her head no. I asked her if she was done and she obviously wasn't. She ate about 5 more bites and that all stayed down! She rarely throws up at night either. I am praying that the antibiotic worked and the swallow study test effects are fading from her. She is having bowel movements so that is also a great positive! The doctors are going to give her a week off of the antibiotics and then possibly start her on Genomicin the next week.

All in all we are happy with her progress. I wish I didn't have to always know where the bucket was but hey we could be in the hospital. I still have a constant fear of spending Christmas in the hospital. With all your prayers and thoughts we will avoid this entirely!

Thanks for your support. I love all your messages. They mean more than you know. We really appreciate all of you!

~Terri and Brian

Wednesday, December 17, 2008

Wherever you go I go!

We are stuck like glue these days. Where ever I she goes there I am as well!

Hello to all on this very chilly evening! So Ava is such a happy, go lucky child. She has been trying to communicate with us a lot more lately. She uses sign language but half the time it is her own she we are not always sure what she means! She gabbers but doesn't say many words. Her speech teacher called a few days ago and ask how everything was going. I told her all about her attempts at talking and she was impressed. However I told her that for right now I'm not going to allow people in the home even to help her learn for fear of them bringing germs to us.

I was reminded today by one of my best friends in the world, Stacie, just how far Ava has come. She pointed out that we have almost been home a MONTH! I remember she wasn't even walking by herself when we left the hospital and now she goes everywhere carting her IV pole right along with her! In fact she was a little on the rough side this morning and the pole came down on top of her. I was worried but all was well.

Ava is still throwing up but some days it seems to be a little better. Here is a recent picture of her stomach, as you can see it is growing together, which is a great thing. They will definitely have to close her but we just aren't sure when that will be yet. This throwing up has got to stop that is for sure! Sorry if it grosses you out.

Here are some pictures of her this week!

Ava and Daddy sleeping so peacefully I couldn't resist a picture!

A Super special thank you to two wonderful ladies. First on Saturday Marian form Princess Projects came and delivered us a fine roast beef and ham super with all the fixings. It was so GOOD! And then to Ava's "new" adopted grandma from the C.O.L.E.S foundation for sending the girls some wonderful Christmas presents. I was in tears that someone that doesn't know us would go out of her way to make our children feel so special this holiday! God is so good! So a huge shout out to both of you, ladies~ THANK YOU!

God Bless you all and thank for stopping by to check on Ava.

~Terri and Brian Helmick