God on the Mountain.

This is my little "foot bath" girl. Who doesn't love a foot bath and rub?

Well Ava has still been throwing up more than I would like but she still seems to be a happy girl. It is starting to turn the intestinal green color. They think the reason she can't keep things down is her intestines just can't tolerate much of anything since they are swollen and inflamed. I started the antibodic last night so well see how that all goes. The first dose I gave at 7pm and then I had to get up at 6 am to give her a dose then at 1pm. I stop her TPN and switch pumps for an hour while her medicine goes in her Hicmann line. Also they cut her TPN down to 14 hours. I'm hoping to see an improvement. I had to give her a sypository tonight because she hasn't had a bowel movement since Thursday morning. Things back up pretty quickly.

Boy it is so easy in life to take things for granted. Having a sick child really puts your life in perspective. I was just telling my Mother tonight I can't remember life before all this trouble. It is so important that you savory every second that you or your family are healthy. It took one day for Ava to turn from healthy to deathly ill. I found this song on You Tube and wanted you to hear it. It is called God on the Mountain. I love the spirit of these girls. It reminds me of how I used to sing with my sister's at church. If I knew then what I know now oh how much more meaning I could have sang with! God has been so good to us!



"God your love overcomes all. I thank you for allowing to recieve you love, mercy and grace. For you are who I serve!"

I want to leave you this Bible verse.

"Then I heard the voice of the Lord saying, "Whom shall I send? And who will go for us?" And I said, "Hare am I. Send Me!" Isaiah 6:8

"Lord take me and use me!" ~Terri

"Where's the bucket?"

Hello Ava Followers!

So today was not so fun. The title is what I was saying all day long. Poor baby she threw up about 3 times today and the first two were large volumes. The swallow study test really took a lot out of her. I think the Barium they use does a number on her organs. They tell you that it is not supposed to but I know better.

So she has been a little down. However she still smiles and laughs so hey that's a good thing! She was really excited when her sisters got home. She seemed hungry today but everything she ate well ended back up in the bucket!

I think I forgot to mention that the culture that they took on Friday came back negative. I was so relieved. That is wonderful news.

I changed her Hicmann line tonight and it still looks good. I change it three times a week, Monday, Wednedsday and Friday. I used to have Brian help with this "procedure" but Ava does well with just her and I so we now try to do it around 3 pm before the girls get home from school. She is so brave. It hurts me sometimes to know all she has been through yet she still amazes me with her strength.

To God be the GLORY! He loves us and He wants to see our lives happy! I just am honored that He has shone us so many miracles. Please pray that she stays healthy so we can continue to be home for the holidays.

I found Ava's Christmas picture from last year. I thought it would be fun to compare her to this year. As you can see she is still wearing the same red dress. I just love it! She looks so little, well she was, I guess!





Again thanks for checking in on our Ava. She is a light that is brighter than any of us know! I'm just honored to be her Mommy!

~Terri

Expecting God's Miracles!

Well I have great news. Ava had her swallow study test today and it was much better than five weeks ago. They had to put an NG down her nose to her stomach because I just didn't think she would drink the Barium. Wow did she fight it. Her whole face got blochy and red. She screamed so loud. I just hate to hold her down for things like that. BUT it did serve it's purpose. Her stomach is "dumping" (emptying) normal. (Five weeks ago it took 45 minutes to empty!) I was just so surprised to see it going into her small intestines and then her large. She took about 6 xrays over a period of about 5 hours. The last xray showed it was almost through her intestinal track. I was over joyed PLUS they found NO BLOCKAGE! This is our Christmas MIRACLE. Ava's doctors were not expecting these results. Sitting here I just can hardly believe it still. So the plans for the ten plus hour surgery "could be" GONE! She does have inflamed bowels. This is due to her recent surgeries and possible intestinal "bugs." She will getting a very strong IV antibodics for about 5 days. If we see improvement we will continue if not we will stop the antibodic. They really have to be extremely careful with antibodics on her. We have to treat the right bug with the right medicine. We just can't have a bad virus go to her Hicmann line. That would be very bad.
My little "trouper!"
Grandma D and Miss Ava waiting in between xrays! She kept giving Ava Elmos stickers.

The live xray machine. Where is Ava going? A big machine for a little girl!

This picture shows her stomach just emtpied into her small intestines. It was the best picture I got.

So they are going to lower her TPN (nutrients) from 16 hours to 14 hours so that she might get her appetite back. I still am concerned that she is still throwing up once or twice a day but they think this could be due to her inflamed bowels.

Now the scary news was that it was very raining and slick this morning right before we got to Iowa City. In our town the temperature was 41 but as we got closer the temp dropped quickly to 29. People were slidding off the road. Many were in the ditches. We prayed and ask God to help us be calm and get us there. If you know me you know I don't drive in bad weather. I was very frightened. BUT we did get there all in one piece. On the way home it was very dangerous as well. Then as we got closer to home it got worse. We got about 3 inches of snow today on top of the freezing rain.

All in all it was a great doctor's visit. Ava's intestines need to start working so we will try to get her to eat more. I don't push food on her. I simply, casually ask if she wants something we are eating. If she does not want it I say nothing further. This is the hard part. The GI docs were talking about a G tube (a feeding tube in her stomach) but I want to stay with the TPN and Hicmann line for a while. It is working so why cause stress on her intestines. We may come to that but right now she is doing great.

Grandma keeping Miss Ava busy during doctor visits!

So please continue to pray that Ava's insides keep healing. This is really a Miracle all that we found out today. If she starts eating they may be able to just close her muscles and sew up her stomach. Wouldn't that be wonderful? It would for our Ava.

For now we will keep doing what we are doing. Ava is such a blessing. She just doesn't let things get her down. WE were at the hospital from about 8am to 4pm. It was a long day but God gave us some fabulous news!

On Sunday night we finally took our family Christmas pictures. I just love taking them but I guess I'm the only one that enjoys this! Crazy pictures and ALL!

Thanks again for all the love, support and prayers! I believe in Miracles, DO YOU?

~Terri

All over the house!

Sorry it has been a few days since my last post. I always say, "If I don't post then that means things are the same. No news is Good news!" Well that is basically the case.

So Thursday when we changed her wound dressing it had a wretched smell. I was immediately concerned. Lisa, our nurse, was here and she said not to worry the wound looked really good. When Brian got home I told him this and he jumped up and got the wound vac papers. They have a whole poster dedicated to "safety information." One of the signs for infection was "bad" smell coming from the wound. So on Friday morning I called Dr. Shilyanski's office. Well was I shocked when the doctor himself andwered the phone. He asked what I wanted to do. I knew I didn't want to take her all the way up there. I asked if he could give her antibodics "just in case." He was leary and wanted us to take her to our local peditricain for a culture of the wound. So that is what we did. We will not know the results until Sunday or Monday. But at least it is in the process. He also ordered another dressing. We got it later Friday evening and it is JUST A SPONGE! I'm not wanting to put it on until I know exactly how to do it. Then you have to wet it to get it off. I really like and have grown used to this large bandage we are using. Her wound is healing nicely. So now we wait. The good news is that she hasn't had a fever. So more frequent dressing changes IS the order. Fine by me but let's not tell Ava. She hates dressing changes.

She is everywhere this child. Thursday morning she tripped over her IV pole and landed in the metal legs. Yea she got a small cut on her forehead. My poor baby! She cried for about one minute and then off my lap she went. She wants to be normal again but it is so hard while she is getting her TPN. We tried to put her pump and nutrician in a small back pack this morning but she gets top heavy and looses her balance. Lexis was helping her get her pants on and over she went. I did start to worry because she cried and cried. I asked her what hurt and she struck up her big toe. I had to laughed. "Your toe?" and we all started laughing her too!

We put up our Christmas tree Sunday night. Ava loves it. She hung her ornaments and had so much fun. I distanced myself as though I'm at the top of the room. I silently prayed to myself, "God you are too good to me. I am the luckiest Mother in the world.Thank you for blessing me with such a wonderful family."




I don't speak of Brian very often because, well he's the dad and what do they do except to go make all the money. I have an incredible husband and the girls love their father. I got Ava out of her bed this morning and she crawled into our bed. She started searching for daddy. "Sis daddy is gone to work honey." Her little eyes were sad. She loves him so much!

Oh some more news. We found out on Wednesday that Lexis has to get her tonsils out. My wonderful mother took her to the doctor because she's been having trouble again with her throat. (Remember she just got over strep throat a few weeks ago.) I thought to myself. How is this going to work? She is scheduled December 26th. Yes the day after Christmas. I'm hoping and defintely praying that Ava wil stay the same and we don't have to do anything major with her before then. Lexid'd doctor said we could wait but we don't know how long Miss Ava will be in the hospital so while we are ALL still home we have decided BEFORE is better. Lexis insists I have to be with her the entire time. I agreed. Daddy will have to be nurse for a whole day!

Here is how Ava has been doing....She eats very little. The best we have found is that we feed her pasta (13 baby pinwheels) with butter about 5 or 6 pm and it stays down. She did go 27 hours without throwing up BUT then I was bragging way too much and up it came. The last two days if she does throw up it is clear, no green! THIS is beyond amazing. She has bowel movements but often she needs a supository to help her pass it. I haven't had to give her Ativan (for restlessness) for about 4 nights. The medicines she is on....Zopran (nausea) Protonics (heavy acid reducers) Erthromycin (anitbodic to help her stomach empty faster) Famotidine, (acid reducer) Ativan and Tylenol suppositories when needed. I think that is all of them. The doctors say the longer they can wait for her insides to heal the better off she will be, so they are thinking now maybe the middle of January. We have an appointment on Tuesday. She needs to do a swallow study test. I told them I want them to put an NG tube down to her stomach because I know she will not be able to drink all the Barium. AND I am not letting them put down very much. Last time she got really sick with that test and was sick for days. NOT WORTH IT FOR NOTHING! We also see the GI docs (stomach docs) This appointment will last all day.

Lexis has a Christmas concert tonight. I am going!! I can't wait she loves to sing just like me. To actually see her up there singing is going to fill my heart with such delight. I'm really excited plus I get to get dressed up and leave the house!! I love you Ava but Mommy needs a little time alone every now and then!

Here is the proof that she is "All over the house." She doesn't do stairs well but that doesn't stop her. She makes me very nervous. Our stairs are straight up. (She loved the stairs before she reherniated, keep that in mind.)



Here is Ava strolling her IV nurticians around. Huh does this work? Not sure yet.


One more cute picture. This is the girls this morning getting into something they are NOT supposed to....Daddy's electric guitar. Don't tell Brian anyone!

I just have to say a few thank you's before I go. We got a %50 gift card to Wal-mart from Stacey in Pennsylvania. Stacey we don't know you but you are one of God's choosen messangers and we thank you from the bottom of our hearts. (In fact if you can keep a secret...we bought Ava's trike for Christmas with your money! I can't wait until she sees it. She misses the one at the hospital! Also a thank you to Nicole in our town of Burlington Iowa. She sent Ava a gift basket of goodies. It was so sweet! She hand colored the card because apparently "Barney" is hard to find now says. We are so grateful to everyone that stops by to see how our daughter is doing. We don't doubt that she is very loved.

Last but not least I redid my "little Angels" video. It now has 26 cdh kids on it. I feel very honored that so many parents let me proudly show off their little miracles! I am very humbled by all that God does in our lives. Here is the movie.

Make video montages at www.OneTrueMedia.com

Again thanks for stopping by!

~Terri, Brian, and the girls

I know who holds tomorrow.

Ava and her "Grinch" smile!

Well Ava has been in a very good mood the last 24 hours. It is so nice to see her little spit fire personality back! She is so smart, this little lady. She knows how to take her own temperature and how to put the stethoscope on her chest and tummy for us to hear her with it. Funny huh? She has also been taking her own IV pole along with her where ever she wants or needs to go. She is a character that is for sure!

For those of you that want to know and see I have decided to show you her stomach. I didn't post it before because I thought it wasn't appropriate however I feel that now you should see for yourselves her true condition. It is not a very good thing to see so if you are at all squeemish look away from your screen now!! She is no where near healthy. She is still a very sick and fragile little girl. Her Hicman line makes her at a huge risk for infection. Her open belly has to be protected at all times. I just wanted you to know that just because she is home doesn't mean she is well. The great thing about being home is that she is in our nice, warm, safe invirnoment. She needs that right now more than ever! Don't get me wrong she is doing very well for the stage of this she is in right now. God has been good to us and we are so thankful to Him!

(See she does still has her belly button it is on her right side!)

This is her large bandage that covers the hole. She is such a stinker! Smiley pants!

I've had a very hard few days. It seems like when you are down that is when the enemy (I call it the devil) sends extra hard things your way. I try to rise above it but I am human and things naturally bother me. I know that this is just what I have to handle at the moment and as many a good friends have reminded me, "THIS TOO SHALL PASS!" I just trust that this is all part of God's "Master" plan!

I took a few pictures with the girls over the weekend. They are such amazing daughters. I owe God so much for blessing me this well! So here we are. Unfortunately we left Daddy out so his time will be later. It was all about the girls!

Thank you all for your continued support. I often bring this song to my mind when I am going through hard times.

"I Know who Holds Tomorrow." This is the chorus

Many things about tomorrow I don't seem to understand,
But I know who holds tomorrow and I know who holds my hand.

That is so true we can't be sure of what lies ahead we just have to have the Faith that God is there and He will hold our hand through all life brings our way. He knows and He cares.

(One more thing...My dearest cousin Mindi went in for surgery this morning. Will you all say a prayer for her that things go well and she heals fast? "Mindi we love you!")

~The Helmick's