Mobile

Iva is gaining more mobility. Her pain hasn't changed much, and she still is tired most of the day.

Today, she went to have her stitches taken out. We are waiting for her to come home.

More later.

Fever Patrol

As parents, fevers are usually cause for concern, especially in very small children. It can keep you up at night, you worry when the medications don't work, and sometimes, if you are super unlucky, you end up in the ER.

Take all that concern and multiply it by 10--that is the concern we have when Iva even hints at having a fever. Today she developed a low grade fever and pain in her right chest with breathing. You pray for the best, and think of the worst. So far, we are not heading to the ER, but everyone is expecting that at any minute, that can all change.

We shall see.

Take 2

Iva came home yesterday. She is still here, so it looks like this time it will stick.

Still lots of pain, fatigue, etc. But each day there is slight improvements.

Next week we go back and see the surgeon to talk about the next step. She did not tell Iva any results of the pathology--only that she would tell her on her follow-up visit. We have all pretty much figured out what that means.

Sadly, one of Zoran's co-workers was recently diagnosed with liver cancer. The doctors have told him he is not a candidate for a liver transplant because of the location/size of the tumor. He is seeking a second opinion. Ray, our hearts go out to you and your family. This disease is hell, we know. It never makes sense, and it is always unfair. Everyone is waiting for their own miracle. Sometimes miracles are incredibly small--like finding the strength to get up and carry on as usual. And sometimes miracles can be enormous--being cured. We pray for enormous miracles for Ray, for Iva, and for all those endlessly suffering in this world.

My hope is that we remember that is not for us to understand; that all this somehow is as it is suppose to be. That we do not begrudge others their victories and happiness when we have none ourselves. That we remain grateful for all that we have been left with. That we never run out of the ability to give. To never be dry and resentful.

Baby Steps

Iva's stay at home was short lived. She came home Friday afternoon, and by midnight that night, we were back at the hospital. Her pain was raging and the medications were not working. She started getting IV medications again, and she has been feeling better. She sat up several times on the edge of her bed and stood up for a brief period of time. Baby steps back home again we hope.

Home Again, Home Again

Iva is home! She hasn't left her bed, but she is here!

Tonight will tell if the drugs they sent her home with will do the trick. On another positive note, they only cost $65! We have fallen in love with the Professional Building Pharmacy here in Clear Lake by the Medical Center. If you ever need any medical supplies, just ask for Ernest. They have a real pharmacy where they do compounding and everything. Ernest has taken great care of us and he is just an all around outstanding human being.

Anyway, that has been one of the greatest things throughout this whole last year and a half. The people we have met that we would not have ordinarily had reason to. The people who have shared their time and resources with us, the people that pray for Iva and have not ever met her. The friends who bring us dinner despite the demands of their own lives. The friends who take our daughters for a day so we can be at the hospital with Iva. The friends who tirelessly pass the word around of Iva and her fight. Those that never tire of listening. I don't know if we will ever have a chance to show them all how much we appreciate them, but each and every one of them has lightened our load and filled our hearts.

Sometimes we struggle to have appreciation in life, to see that there is more than just endless suffering. Each and every one of you has made it that much easier for us, and for that, we will always be grateful.

Finally

I have been wanting so badly to report something positive. For days, I have had nothing good to report, because Iva has been absolutely miserable. She was having immense pain, she was bed-ridden, and she was mentally a mess. The pain medications have been causing all sorts of problems. All the doctors have been really mystified, truly. Her last surgery was on Thursday and as of yesterday, she had not improved at all. Not one iota. I sat with her all Saturday, watching her suffer, waiting for any moment where I could see that she might be better. But nothing. Pain, hallucinations, dizziness, cryingl, suffering, suffering, suffering.

Yesterday, she finally agreed to take all medications as prescribed, to just forget that they were making her feel drugged, and as I had hoped, today she felt a bit better. They are now talking about sending her home tomorrow. YEAH!

Transfusion

I just left Iva at the hospital. She is getting a blood transfusion right now. They think it should help some of her symptoms. They decreased some of her pain medications and changed others. Double vision greatly improved, so has lightheadedness, but she is still having breathing difficulties and can't move from her bed. She is still needing oxygen.

This day has been immensely difficult and exhausting. We could all use a transfusion of hope, faith, and energy.

Sleep well sweet Iva. We will see you tomorrow!