We are home!

Sadie knocked out after getting all 27 leads attached. It took 45 minutes for the tech to glue them to her head. It was not pleasant, but we made it!

We are so proud of our little trooper!!! She did so well (after the lead hook-up). Though we did not get the wireless room we were hoping for, she did great being confined to one room for three days!

One reason Sadie did so well in one room was from all the wonderful visitors she had who came bearing gifts! She even had gifts arriving in the mail...you'll notice lots of pigs and lots of pink!

We are back home! We were released around 5 tonight. It has been a roller coaster day of emotions. As of this afternoon, Sadie had not had any significant seizures. I was feeling very discouraged and desperate for something to happen. The plan was for the nurse to “startle” Sadie towards the end of her nap in order to see if a seizure would come(something similar to this happened on our first day by accident). After 1 ½ hours of trying to get her to nap, Sadie finally fell asleep at 2:20. Less than 40 minutes later, and many desperate pleas to the Lord, she seized on her own. The nurse was on her way to arouse her when she saw it happening on the video monitor as well as the EEG.  I have never been more thrilled to see a seizure!

From the seizure, they were able to determine that it was a Benign Partial Seizure, which is from the type of epilepsy that we already knew she had from the September EEG, Benign Rolandic Epilepsy (BRE)or Benign Partial Epilepsy, which typically presents with night seizures. In September, we went in because of the night terrors (or so we thought) and also discovered that she had the BRE. At that point, we were unaware of any seizures. They put her on meds to really treat the night terrors, because they wouldn’t normally treat the BRE if there were not any symptoms (i.e. seizures). This has done little good as she continues to wake throughout the night. So we really didn’t learn anything new…just that now she is having seizures due to the epilepsy that she has. We learned that the seizures are not damaging her brain and that she will eventually grow out of this epilepsy (that is the Benign part). From the EEG, we also learned that is “very, very active” meaning that at night her brain is abnormally firing at a high rate. However, there is not much they can do about this.

The discouraging part for me was that we were basically told by the doctor (who is an expert in epilepsy, however there was a language barrier as well as cultural barrier- you can imagine the frustration) that there was not much they could do for Sadie. They would continue her on the epileptic medicine and increase it as need be, but their goal was not to end the seizures, just decrease them because they were not causing Sadie any long-term damage. I was told basically and I kid you not, to not worry that Sadie would grow out of this in FIVE OR SIX YEARS!!!! When I asked about her sleepless nights, I was also told that it was not a big deal, that she would get the sleep when she needed it and there was nothing they can do for that either. Her “natural arousals” that she has several times a night were normal and eventually she would adjust to her natural sleep pattern. As for the times she wakes at night from seizures, she would eventually grow out of those to!

 I really can’t even describe how I felt as the Dr told me that none of the things we have been experiencing for the last 8 months are coming to an end any time soon…like five or six years. At this point, I can’t even wrap my mind around it. We would love for you to pray that the Lord would allow us to process this information and adjust to the fact that what we have been living is our long-term reality. I trust that the Lord’s grace is sufficient for us, though I admit I have no idea how we are to keep going at the rate we have been experiencing. I also know that He gives us His daily bread for today, not tomorrow. So By God’s grace we are going to choose to live one day at a time, receiving His tender mercies afresh each day. I will already beg for your prayers for this because I have recently felt at the end of my rope, not knowing how much more we can take.

I hope this all makes sense. I am exhausted physically and emotionally so I am sure I have left something out. Please feel free to ask questions if it is unclear. As always, we are so grateful for your prayers and the many ways you have walked this with us. We have felt so loved by our Church, family, and friends. So thank you. We love you!

When wondering “why Lord?” I keep thinking of the verse from John 9:3,” But this happened so that the work of God might be displayed in his life”.