Here on World Adoption Day I thought I could give you a little update on the little. This summer we spent a week in the hospital to see if Rae would be a candidate for epilepsy surgery. This was scary because, how do you decided to allow your child to have brain surgery. In addition, to the stay in the hospital, there were many scans and testing. As the doctor called it – “million dollar testing”. After all the testing was done, we had to wait for results.
All of Rae’s info for testing was presented before a room of doctors to see if she could have the surgery. There were so many questions. Would we? Would we not? How do you make that decision if it was left to us?
We chose to seek the one who could best help us make the decision – GOD! We put our faith in Him. My prayer was that the decision would be black or white – yes or no – simple. God has gotten us through all the ups and downs of all of Rae’s needs – why would He not be here for this decision.
It was time to meet with the doctors to see what their recommendations where. God came thru – after meeting with her doctor the decision – as hard as it was – it was basically made for us. We said yes to the surgery. Are we happy our daughter has to have surgery, no, but it is the best for her. Is she happy, no, but she knows it will either eliminate or greatly reduce her seizures. The surgery is to help save her brain function and to improve her memory. As she has gotten older, her seizures have increased in amount and frequency. As we discovered, each seizure was actually doing damage to her already damaged brain.
The surgery will be done at Nationwide Children’s Hospital next month. We are nervous, but we have so placed our faith in Christ. Whatever happen, He is sovereign and will get us through it all. Our prayer is that God will be glorified through this.
I know I have been a little absent around here, but I just have not been able to think of what to write about. We have not done anything too exciting. Here is a quick list of what has been going on with us.
1. high school band concert – It was Emily’s first concert with Granville High School. They did an awesome job, and we are looking forward to the next one.
2. last week of this session for the little one’s swimming lessons.
3. hematology appointment for the little one – standard appointment with nothing new to report. numbers are good.
4. pain clinic for Hannah – not too encouraging but I did make her happy with a strawberry & creme frappuccino.
5. Friday night fun with the little one – they big girls were at teen night and we took the little one out for dinner and games. we tried a new food for us – guacamole. i know, we really liked it.
6. Emily and I were back at the farmer’s market. She had been off because of various commitments and I took off for the little one’s birthday. We had a good week. Emily learned that granola sells quick at the market.
7. Hannah was inducted into the National Honor’s Society. She was not sure if she would make, but she was very excited that she did.
I picked up these shoes for a steal this week. They remind me of shoes my dad use to where when I was a kid. It was a sweet memory.
Emily in her dress she was so excited to wear at her band concert.
I thought I would give you a quick update on the little one’s and Hannah’s health.
At the beginning of the summer the little one started on a new medication called Sirolimus to see if we could prolong the time between IVIG treatments and hopefully eliminate them. When I talked to the nurse they told us that they were getting good results with this medicine. We were nervous about trying something new, but we knew she was ready for a break from all the sticks and hospital stays. So far it seems to be working. She is not needing weekly finger sticks unless we think there is a need for it. We do know she is not a therapeutic level yet, but she is on her way. We go back in a week to check to see how it is working.
Her seizures are still pretty much under control as well. She has had 2 episodes since we have gotten back from our trip. We think they happened mostly due to her growing up. Sadly, because of this they had to increase her medication. She is such a trooper with all the medication she is having to take.
Hannah is doing ok as well. It has been a year since we started on the journey to figure out what is going on with pain issues. A year later, we still do not know. She works through her pain daily. She has played through it during her tennis matches. She is also still going to the pain clinic at Children’s. She has good days and really bad days. We pray that God will miraculously intervene and take her pain away. We are not sure why he has chosen her to go through it, but we do hope God will use it in some way. She is doing her best staying active and not letting the pain take over her life.
It has been almost two years ago when we experienced one of the scariest days as a parents – seeing your daughter in a full blown seizure and there is nothing you can do. Our older girls have both had surgeries and were worried about those, but nothing prepared us for that morning. We were very worried, and all I could do was pray. We knew God was bigger than all of what were going thru. There was no one to be mad at. We could be mad at the Ch*nese orphanage or directors , but what good would that have been. They said they didn’t know either. There were many ifs, but we had to accept that this was what God had planned for us. He was going to get us thru this.
I hate to think if we had known everything, and we had said no to her referral. God is sovereign and he has big plans for our daughter. His plan may even be to trust Him even more, well then – let it be. I would not trade this journey with our little girl for anything. She has brought such joy in our lives, and we love seeing her learn new things especially her love for things of God.
This morning as we were driving into Children’s Hospital this song was playing on the radio. I’m reminded He is there and will always be. Not For a Moment by Meredith Andrews
You were reaching through the storm Walking on the water Even when I could not see In the middle of it all When I thought You were a thousand miles away Not for a moment did You forsake me Not for a moment did You forsake me
CHORUS After all You are constant After all You are only good After all You are sovereign Not for a moment will You forsake me Not for a moment will You forsake me
You were singing in the dark Whispering Your promise Even when I could not hear I was held in Your arms Carried for a thousand miles to show Not for a moment did You forsake me
And every step every breath you are there Every tear every cry every prayer In my heart at my worst When my world falls down Not for a moment will You forsake me Even in the dark Even when it’s hard You will never leave me After all