Ava holding her own.

If I could describe Ava in a few words I would use these…….warrior…..fighter……fire-cracker. But the one she is the most is enduring! She tries hard not to let her health stand in the way of her life. A prime example of this is after her nap this afternoon she came downstairs looking for me. I was in the basement, as soon as I opened the back door her eyes lit up like flashlights. There was a gorgeous Ava smile shining right at me. She ran to me with her arms open wide. (I tear up just remembering.)

To catch you up I will go back to Sunday afternoon. I talked to Iowa City and the intern told me that they did not want to give her any more antibiotics, as they didn’t think they were helping. I sat there shocked. I told her this was “unexceptable”. Of course they were helping her we just needed to switch them up. So I asked her to have Ava’s surgeon call me as I needed to speak to him. (Talk logic and reasoning into him was what I had to do.) So that afternoon he called. He told me that Ava’s episodes were becoming too close together and she was not getting better with antibiotics. I told him I wanted to give antibiotics a little more time. He did call her in another antibiotic for her. It is Neomycin. So we are doing that and Flagyl. So far her body is tolerating it well. She threw up a total of three times on Sunday, all projectile vomiting and very much stool. I only let her drink and we avoided food even though she was hungry I knew better.

So she did extremely well overnight. She slept the whole night through. I set her g tube to drain most of the night, except clamping it for the hour and a half for her antibiotics.  This morning she woke up happy and feeling much better. We took it easy and by 10 am she ate her first piece of toast. She did fine. Then it was nap time. She slept a good 3 hours. Then she ate 2 whole fried eggs. She is just still nauseous at times, placing her hand on her tummy and looking down at the ground with a deep concentration on her forehead.

She ate another egg for supper. She drinks fabulous so no worries about dehydration for Ava yet. Tonight she insinuated on taking the dog for a walk. (Remember the dog is blind and deaf. We stopped taking her on walks several years.) So Ava and I and Belle went around the block. Belle didn’t know what to think she just kept sniffing everything!

As you can see her stomach is big but staying about the same. Tonight it is measuring 55 cm’s at the biggest part.

I have to send a “thank you” shout out to Nichole Rayburn. She sent a gift bag over for the girls. Ava LOVES the bubbles. You should have seen her eyes light up. AND she loved the wind-up butter fly bugs. It was so nice of you. Lex and Em got jump ropes and puzzles. They were pretty excited!

And the pretty bracelets!

So we are facing the fact that Ava is going to have to have surgery. Her body is not opening up enough and we can’t let her be in pain. As long as the antibiotics work we can buy a little time. We will do a swallow study test in a week or so to find the location of the obstruction. Then we will probably set up a time for the surgery. We know that it is important to have Ava well when going into surgery. I feel like this decision is out of my hands. We just can’t go on like this. I was hoping that God would heal her without another surgery unfortunately it is not turning out so easy. We know there is a huge risk for more scar adhesions but we must try.

Thanks for the prayers. I feel better today about the whole situation. I know that she is in God’s hands……she always has been.

I got this statue last spring, before Ava’s reherniation . It is one of my favorite things. I saw it and had to have it. It reminds me of God’s hands around Ava…………..always protecting her, even today!  It sits on our fireplace mantel and every time I see it I ask God to hold her closer than ever before!

~Terri

Knowing the right thing to do.

So Miss Ava is taking a step backwards. The last few day we have noticed her tummy is becoming louder. The grumblings are stronger. This is a warning that the bacterial overgrowth is picking up steam.  Her tummy has been measuring bigger but then it wil go back down over night. Well last night she awoke many times I would hear her stomach grew really loud, then she would cry for a second then go back to sleep. I’m pretty sure she gets bad cramps. I knew the next sign would be the “water running sound “ her stomach does with this overgrowth. Then would come the vomiting stool. Oh how right can I be? At about 5 am she started the water sounds then started gagging. She finally threw up the stool at about 8:30 am. So here we go again.

I have called Iowa City and are waiting for them to call me back. I asked for a new antibiotic. I swear the drugs stop losing their effectiveness to fight the bad bugs or they fight all they can and can do no more. I feel like screaming.!!!

I know we back off food (she still is hungry and wants to eat) and start the process a over again. I am running Pediatye through her g tube. My hope is to avoid the hospital  like we managed to do about 10 days ago.

So I’m in that “not again” mentality. It is clear her obstruction is getting the best of her. I just can not bear the thought of having another surgery. This is so unfair. At her last appointment I sat there thinking of all the sick kids that were all there that day. I kept wondering why this happens….why does God allow so much pain in children? Then I came to a thought. Is one of the reasons so that doctors can learn more….therefore eventually saving more kids? I know there is a plan or lesson to be learned in all of this……but why must Ava suffer?

If only you all could hear my prayers the last few nights to God. If we adults are sick we run to the doctor and beg for medicines to make it go away. In Ava’s case and many complex kids,  they have no answers as to why things work and why sometimes they don’t. This has to be the most frustrating part. She can’t talk so it is hard to know what she is feeing. I do know when she cries she has had her limit. Ava is so amazing. Right now she is watching Elmo. She smiles and laughs at the funny parts. She has just learned what “humor” is….or so she thinks!

This is last night. She loves snuggling with Daddy.

I guess all we can do is pray. Thanks for the support.

~Terri

Clydesdale Horses

The Budweiser Horses came to Burlington yesterday. Actually we saw the semi trucks when we came back from Ava’s appointment yesterday. We passed them! They are gorgeous horses. So tonight we took the girls out to see them. Wow what a treat. We had seen them last summer while visiting my sister Amanda in St. Louis. I love horses. These guys are extremely big. Ava said she wanted a ride….we all laughed!

 

Daddy and Ava standing by “Nigel”.

God made these Amazing animals. So pretty and So strong!

What a great time we had. Miss Ava is continuing to do well. She is eating SO well. I can barely keep up with her! Thanks for stopping by!

~The Helmick’s

Long day…..of appointments

Yesterday Ava was seen by two of her doctors. Dr. Brophy who is her bladder /kidney doctor. He thinks she is doing fabulous from his point of view. So he told us that unless she has problems he didn’t need to see her for a year. YEAH! 

We also saw her surgeon, Dr. Shilyanski. He really cares deeply for Ava. He listens to my concerns….that is why I like him. He is still very concerned about her partial obstruction. She has a narrow spot or a few of them that are causing problem. Even when her tummy “appears” smaller she still has extra air in her intestines. He wants to wait this out and see how she does on her own. So the plan is if she continues to have these “spells” where she gets distended and throws up about every week or two we will have to think about surgery. Sometimes partial obstructions can resolve themselves…….sometimes surgery is the only option. However I am VERY concerned that surgery will only cause more problems, as I have said before, surgery= adhesions, which in turn cause more obstructions leading us back to surgery again. I have a strong sense that God is going to heal her insides. He already is! Dr. S was shocked to see her looking so well.

He is worried about her weight. (I am too!) She is 25 pounds but is up a bit from her last appointment a few weeks ago. She is in the 10 percentile for her weight. SO I asked if I could switch to a more natural formula. One that contained real food. I asked for Compleat Pediatric made by Nestlee. They agreed and I picked up a case at the home health care place before we left town. I’m excited about giving her this slowly at night to boost her weight. Well that is my hope!

I took Lexis with us I need an extra pair of hands especially if it is more than one appointment. During the wait of the next appointment we went up to the 8th floor. They have a outdoor patio and it was just gorgeous yesterday. It was so peaceful and gave Ava a chance to relax and just be!   The birds would come right up to us and beg. I couldn’t resist so we fed them some of Ava’s crackers. We stayed there until the sun got too hot and then I was worried about sun burns.

This is a few angles of the view from all the way up here.

Next we went in and saw their medical museum . It was So interesting. Here are a few pictures of Lexis with a skull and her next to a very old ventilator. They used to put the kids in the tube. So happy for technology!

I will have to admit it was a very long day but we made the most of it! After all that adventure we still had about an hour and a half so I told Ava that it was time for her to take a nap. I covered the stroller. (She can barely fit but I still feel the need to keep her very protected while we go anywhere especially the University.) Lexis and I walked everywhere. We went from the new building to the old building back to the new one again. Needless to say we were exhausted at the end of the day. We stopped by McDonald’s and I debated what to get for Ava. I got her a cheeseburger and she ate it ALL! Plus 4 fries and she was still hungry. Can you believe that? I told Dr. Shilyanski that this to me was a good sign. If she wants to eat than this assures me that things are working the way they should.

She did have to have her blood taken and she was a trouper. She wanted to keep the elastic thingy…..well Lexis did and then Ava thought it was a toy. I also had them check for Celiac disease. This will relieve my mind a bit if I just know.

Her tummy this morning was down even further.I started her new formula and she did great with that. I only set the rate at 20 ml’s an hour and ran it after I got up at 2 am to give her the antibiotics. It is great to see her tummy look normal. It hasn’t looked this good in about 3 weeks! See God is healing. He is the “Great physician” as my Mother is always reminding me.

So we are strongly praying Ava’s insides will heal on their own and NOT cause any worse obstructions. We are continuing the two antibiotics until I feel she can trail off. Thanks for all your support and prayers. Oh to those of you that were concerned about my Mother she is doing a lot better. Funny thing….she will kill me for saying this but she was “full of crap” just like Ava!

~Terri

Fun - Ava

Ava is still doing fine. She has been eating  really well but also having lots of diarrhea from the antibiotics. She seems like it doesn’t bother her at all, so that is good. She has an amazing spirit.

I decided my other two girls needed my attention tonight so after Daddy came home from work we spent some much needed time at “Fun City” thanks to Aunt Lela who gave them cards to do whatever they wanted. We did bowling and BOY did we have FUN. It was so neat to see how big they are getting. I spend so much of my time with Ava that I am missing them too. It saddens my heart some. I explained to them that I loved them just as much as Ava but for some reason God wanted us to learn patience and more love through their baby sister and they would have to be understanding of her needs. I apologized for her taking so much of my time. At the end of the night they both hugged and thanked me for all the fun they had. I was so happy. We will have to do this more often. It is usually Brian who does the fun stuff with them because I am Ava’s number one choice. I need to put them first sometimes too. They are becoming little ladies in front of my eyes.

I love this picture of Emeline!

AND here is a great one of Lexis. Yes she really bowls like this!

I really have such good girls. I couldn’t ask for nicer girls. I am blessed. Ava has her check-up appointment with her bladder doc and surgeon tomorrow. Pray for us as I hope we can find some answers, although I doubt they will know what is working right at this second to make her better.

~Terri