Well, we didn't get the all clear with Hannah. Her EEG still showed some abnormalities. The neuro did classify it as "mildly abnormal," which is better than it has been. I am thankful that the abnormality showed up. I prayed that if there was something that we need to see on the EEG, for it to be picked up while we were there. So, although we would like it to be normal, we are thankful that this showed up. (I hope that made sense) What they found on the EEG is slowing in different parts of the brain. There were none of the spikes that we typically see on Hannah's EEG, nor any generalized bursts that we have also seen in the past. The doctor's initial response is not to recommend anti-epileptic meds as there were no spikes. I did not talk to him, only the nurse practitioner. She recommended we get an appt to discuss it with him, which we are going to do. With knowing there is some abnormality, we are left wondering what to do. The nurse practitioner agreed that given the slowing showed, Hannah could still be having spikes, but that she didn't have any in that 48 hour period. We have decided for now to start her on the anxiety meds and then meet with him to discuss the potential benefits of epileptic meds. We just want to be sure we are helping her as best we can. If the issues in her brain that have shown on the EEG are contributing to the anxiety, we want to make sure we cover them. If anything, her fainting spell while there just revealed to us how deep her struggle is and that we have to help her. I had hoped this EEG would show us exactly which course of treatment to do, but it is still not clear to us. We are praying for discernment with this.
I talked to the GI about Sarah at the end of the week. His response to the new mouth ulcer and stomach pain is to move forward with the colonoscopy/endoscopy with video capsule that we originally had scheduled last week. Again, we aren't feeling certain in this area. I am still inclined to wait for her to really be sick and pray that possibly we won't have a need! In light of the GI still wanting to have a look, I took her to the hospital Friday afternoon to drop off another stool sample and also to get another culture done on her mouth ulcer. If this sample shows inflammation that will help in making the decision. Also, if the culture shows the ulcer is something viral, my concern will drop a lot! I am waiting to hear from them. Sarah also had some of her brown urine this weekend. I took a urine sample by the hospital on Sunday. Today it is back to normal. We never know why this pops up, but just follow it. We also got some labs done on Hannah that we have had since September.
Makaylah has had a good few days here. We have not seen as many bad pain episodes- praise God! She has had her moments, but they haven't wiped her out like others. All of the girls had a ball Halloween. Makaylah was very overheated in her costume with the 89 degree day, but she didn't let anything stop her! I put a pic of all the girls at the top. They were quite a mix! :)
A cute story about Makaylah- I had to get bloodwork done today for a procedure I'm getting done on my kidney tomorrow. She went with me, so very relieved it wasn't her this time getting labs. When we went back she stood so sweetly in front of me and grabbed my hand. She barely gave the tech room to work. She held my hand so tight, smiling at me, encouraging me on. I realized she was being me. She wanted to be for me all the things that I am for her when she is getting "poked." She kept telling me it doesn't hurt and squeezing my hand. I couldn't feel any pain with that kind of support! She is a blessing.
Please continue to pray for discernment for us with making these decisions with the girls. It is easy to feel overwhelmed and panicked over procedures, medicines and making the decisions to do any of them. We are turning it over to Him knowing that no matter what, it will all be ok. There has never been a time that God has not provided, even in the darkest times!
Please keep Evan and Ian Dustan in your prayers as well as the Easley family. We are praying for our CB friends who are struggling- Eithene, Amy, Kylee, Jesse and so many more! Thank you for your prayers and amazing support! Love, Julie
This is from a new book called "Footprints" that I got:
When the outlook is not good, we should not fret. We need a change of perspective to realize that God sees tomorrow more clearly than we see yesterday. The future is completely in his hands!
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7
