Edward is improving daily--Praise the Lord! Here are videos of him crawling on Day 9 post-IVIg and walking while pushing the kitchen stool on Day 10. We are more excited about these milestones than we were when he reached them the first time! He is able to sit up with confidence even in the slippery bathtub, which is one of the first places I noticed he was unsteady last month. [...]

Here is a collection of short video clips that provide an overview of Edward's disease progression and recovery. We'll be adding videos as treatment continues, so keep checking back.[...]

We are eight days out from the IVIg treatment, and all things considered, it's been a very good week. Edward has gotten a little better each day, with the exception of some fussiness and apparent discomfort the day he went off the decadron, and an overlapping day and a half of low grade fevers, during which we spent four hours in the ER at Helen DeVos Children's Hospital. 

Ordinarily, I wouldn't even give Tylenol for such a low fever (between 99.6 and 100.6), let alone call a doctor, but because of his port Edward is at higher risk for infection. Our discharge instructions from hematology/oncology ("heme-onc") said to call if Edward sustained a fever of greater than 100 for more than 12 hours. His prolonged fever plus the fact that one of his ten incisions was green and goopy were enough for the on-call heme/onc resident to order some antibiotics run through Edward's port. She said if this happens in the future it might be fine to go to the ER in Muskegon to have his port accessed, but because surgery might want to take a look at the wound, it would be better to come in to Helen DeVos this time. It happened to be the last night Kameron's mom was with us (Wednesday), which worked out really well as we were able to leave Henry sleeping at home. We were so grateful for all the help she gave us while she was here![...]

As a wonderful Sabbath gift, Edward and Emilie are home! This will probably be our last post for a little while, as we settle back into normal life. Of course, there will be follow-up visits with the surgeon, neurologist, and hematology/oncology team, and we'll let you know about any new developments, especially as Edward shows improvement with various treatments. Also, we have many, many pictures to share, and as soon as we have time to share them, we'll let you know![...]

There's really not much to report today, except that we know we will have at least one more report from here tomorrow. Here's why...

Over the course of ten and a half hours last night, Edward received his first intravenous immunoglobulin (IVIg) infusion. As it was concluding this morning, he had what was most likely a reaction to the IVIg--a significant increase in his heart rate and respirations, and a slight and occasional dip in his oxygen saturation. He was put on a bit of oxygen and given some Tylenol. He caused a lot of bustle and worry, but was completely back to normal and off the oxygen within two hours and has not shown signs of distress all day since then.[...]

Edward slept and nursed well last night, and continued to improve all day today in the PICU. By afternoon, an x-ray showed he had improved so much that Dr. Robertson took out his chest tube. A while later Dr. Theleen came by and took out the epidural. By late afternoon we were taking the short trip out of the PICU and back to Edward's room on the hematology/oncology floor. It felt like coming home![...]

Sorry we didn't post yesterday. We were so excited to see Edward that we just lost track of time.

The surgery was successful... sort of. The primary objective--to ligate (seal off) the thoracic duct to stop the chylothorax (leaking of lymphatic fluid into the chest cavity)--seems to have been successful. For most of last night, Edward slept peacefully and was even able to nurse three times! We are so happy about how well his pain is being controlled.[...]

I think the Lord gave us a calm, quiet Sabbath to build up energy to handle Sunday. Actually, as I write this on Monday morning I'm so tired that I'm struggling to recall Sunday. [...]

Edward and I slept well last night for the first time in about a week and a half. It was a Sabbath miracle! Eight hours of sleep. A-MAZ-ING!

We had a quiet morning reading and sleeping. Edward had a little more pain, but they raised the rate of his epidural just a tad, and it seems to have helped. He also gets toradol about every six hours, and the combination has been pretty successful. His chest tube dressing had to be changed in the afternoon and that was hard on him, but he got to cuddle with Nani and then take a ride in the wagon through the quiet weekend hospital halls with Henry running around nearby, so his day got better. [...]

Last night after Fremont board meeting, Kameron visited the hospital and held Edward for a couple hours allowing Emilie to shower and whatnot. After he left around midnight, she and Edward endured another rough night together. Edward was receiving morphine every hour, and it was wearing off in about 45 minutes, so he would wake up crying over and over.[...]