June 3, 2017

First Hospital Stay of 2017

Ethan was diagnosed with strep throat on Monday, May 22nd. He was prescribed a 10 day antibiotic which finished up Thursday (June 1st). Thursday night we had to administer his rescue medication to stop his seizures and we had to do this again Friday morning. After giving him the rescue medication on Friday morning I took him to the ER.

We were admitted and spent the night. Blood and urine samples were "okay," but the nasal swab was positive for a cold virus. So, sometime during the treatment of the strep throat Ethan also caught a cold. He is still extremely lethargic, but we didn't see any seizures today. We got home around 5pm this evening. 
Jeff did an amazing job holding down the fort here at home while I stayed at the hospital and I'm very thankful for the friends that helped out yesterday so that Jeff could come visit us for a bit.

Prayers for Ethan's continued recovery and for no more breakthrough seizures is greatly appreciated.

November 20, 2016

Sick. Seizures. Sick of Seizures.

Ethan's continuing to fight the "bug" that has been plaguing him for more than a week now. The cough isn't going away, and I'll be calling the doctor tomorrow.

Yesterday, I had to use Ethan's rescue medication in the first time since May. While the seizures have returned over the last couple of weeks, we weren't seeing them every day and they hadn't started to cluster until yesterday afternoon. I am thankful that the diastat stopped them, but I hate that I had to use it. The diastat really kicked his butt yesterday and he slept for more than 4 hours. It finally got late enough that we had to wake him, which was hard because he was so groggy, but eventually he woke up.

Although we were concerned that Ethan might be up all night, he wasn't and slept really well until around 5:30am, which isn't bad considering that since the time change he has been consistently waking up between 5:00 and 5:30am. Ethan and I stayed home from church this morning and sent Jeff and the girls as our representatives. Ethan's been napping for a while. This bug, whatever it is really needs to go away!


November 14, 2016

Seizures are back. Operation Christmas Child. Sick Kids. Friends Hospitalized.

Ethan's been back on the full dose of Topamax for more than a week. Unfortunately, the seizures are still breaking through. I called the Epileptologist's office on Friday, and he instructed us to increase the Charlotte's Web from 9 drops twice a day to 12 drops twice a day for a week to see if that would help. If they are still breaking through we are then to increase the Charlotte's Web to 15 drops twice a day. Friday evening we began the increased dose. So, we'll know wait and see what happens. Friday we witnessed 4 seizures, Saturday we saw 2, and Sunday we have seen 2. Thankfully, they are all relatively short, just 5 to 10 seconds each, and so far they have not clustered, but it's still awful. I hate seizures.

"Big sister" saw one Sunday, while we were all at the table for lunch, and was surprisingly calm about it. Sometimes it is hard to believe that she has only been in our home since June. She has become a tiny little advocate and ambassador for Ethan. Yesterday, she introduced Ethan to Children's Church when he and his helper went in there so Ethan could listen to the music. In her own way she seems to understand that Ethan is special and different than everyone else, but you can still tell that she wishes he wasn't. Yesterday afternoon she asked me if Ethan would have a job when he grows up. I told her probably not and that he'd probably always live with us. I asked if that would be okay, she said yes. "Little sister" doesn't seem to notice or care. Sometimes she's really gentle with Ethan, other times she is rough -- or otherwise, being a pretty typical sibling! Mostly, she's too busy being jealous anytime she isn't the center of attention. She is 2 after all.

On Saturday we ventured out as a family to shop for our Operation Christmas Child Shoeboxes. We have done these for several years, and have always done one for a child Ethan's age, so this year we put together one for each of the kids. "Little sister" was very upset that she didn't get to keep the dolls, but "big sister" seemed to understand that the items would be going to children somewhere in the world that needed them and that blessing others is one way that we can worship God. 

All three kiddos have been fighting some bug, but it seems to be on it's way out, or at least I hope so. We had a very long family visit to the pediatrician on Thursday afternoon and ruled out ear infections and strep throat. No one ran a temp, but everyone had coughs, sore throats, drainage, and snot. Energy levels seem back to normal so "big sister" is headed to school today, but Ethan's staying at home with me and "little sister." His cough is still pretty nasty and he woke up with diarrhea.

This past week was a tough week for so many of our friends. Several of Ethan's PBD-ZSD buddies have been in the hospital, thankfully at least one if not two of them have made it home already. Our friends who recently returned home from China with their newest addition have also spent almost every day since their return in the hospital with their little one. You can follow their story here. As the fall fades and the winter begins it is likely that both our family and so many others will face more times of illness. The winter months are hard on everyone, especially children and adults with compromised immune systems.

My heart has been heavy all week. We've been battling Ethan's seizures, the kids have been sick, the election didn't turn out how we thought it would, so many of our friends' children are having health issues, and there are some import upcoming dates related to the girls. Prayer is greatly appreciated.