A thankful heart in the midst of....

So today is day 2 at the hospital with our Riley girl.

Yesterday she began a very big test for her. A tube was placed in her nose, going all the way down to her stomach. The goal is to monitor any reflux, asthmatic activity or aspiration. According to PH levels showing from her stomach, shows the doctors any reflux or acid in her stomach, therefor contributing to coughing, lack of REM sleep, asthma symptoms ect. The tube stays in for 24 hours and then results can be gathered. Riley pulled the first tube all the way out, so we had to back and have it done again, followed by an x ray that shows if the tube is in just the right place in her tummy. She now has no no's on her arms that resemble little cast like bands on her arms that don't allow her to bend her arms or touch her face. By wearing the no no's, she won't be able to pull the tube out again.

We have been in isolation since yesterday when we arrived. We were told that the proper test were not done done at Children's Hospital in April to show that she is in fact MRSA negative. We will remain in isolation until she has 3 negative cultures from her nose and ears showing that the MRSA is gone.

Today we will attend what they call parent group which is like a support group for parents with a hospital staffed psychiatrist geared towards parents caring for a chronically ill child.

This afternoon we will have various skin tests done to see if Riley has any allergies to foods, materials ect. She will also meet with her immune deficiency doctor who is working to determine if Riley has any immune deficiency issues. We were told yesterday that it is unlikely that she suffers from any major immune deficiency as we would have seen much worse issues that what we've been dealing with thus far.

I spent much of the night crying, tossing and turning and watching Riley, praying. I miss Leea and Carson terribly, even though we've been away one night. Having Riley's tube inserted the second time was so hard to watch. I ask God why she must suffer and I plead with Him to heal her. Then I must repent for I know those prayers are not what pleases the Father. Instead, I must pray for myself to be flexible and willing to keep giving Riley to Him for she is His, not mine. I must pray to be wise in what He wants for me to know, I must pray that He is glorified, that others come to know Him through our ordeal, through our Riley girl. Though I know my prayers are precious to the Lord, I know what He truly desires for me and that is to pray in that manner, getting closer to where He wants me with each prayer. I also know how much worse this all could be. While we wait for numerous test results, it could always be worse.

I some ways I fear after these 10 days that we know nothing more than we do right now, that doctors can't figure out what is going on with Riley. While it's somewhat a good report, it means in ways that we will continue on, all of this behind us and just not know. My mother in law used to tell me all the time, "we can deal with what we know." While part of me doesn't want to know, a big part of me does.

For some time, Riley's ped has felt CF was a nasty culprit in Riley's health. Many of Riley's symptoms match CF symptoms. Back in April, after many sweat test that showed inconclusive results, we finally had a blood test that showed a neg result for CF. Today we learned that she was only tested for a certain part of CF, not CF in general. Her doc at National Jewish feels we must do the other part of the CF testing to totally rule it out. It was heartbreaking to find that something we thought had been laid to rest, discounted, has in fact come back to haunt us.

I am learning how true it is that God's grace is sufficient in my time of need.It is rare that my husband is home, that I get him instead of the army. He is here, holding my hand, taking shifts with Riley, praying with me, getting coffee and food. Just this morning, he took Riley and played with her toys with her, feeding her breakfast so I could sit by the window to journal and read my Bible. Through friends and family, He has provided our every need. When the finances look scary, He provides thru a family member wanting to help. When I worry of Leea and Carson, He provides the best care they could receive from our very generous friends. When I worry of all the meals, food preparation, He provides the church to take over, pray for us, pray over us. We are so comforted by the many who have reached out, the many offering their beautiful and heartfelt prayers for us.

In the midst of this awful, awful trial, I am thankful. I am thankful that even though I want so badly to go home, we are getting such great care here for Riley. I am thankful that our kids are well taken care of, that financial help has generously been given, that our church is supporting us, for our friends and family. I am thankful that God is control when it feels everything is spinning out of control. I am thankful for His plans above my own.

I thank you all, those who have helped, prayed, reached out, followed us on our journey. Thank you. It seems so little, two words that are so simple. Thank you doesn't seem enough. So I just keep saying it, thank you, thank you, thank you.