The Lion Fights: No. 9

Well, it's been awhile since we've written. As you may be able to imagine, we have been pretty busy with all of Ari's therapy and adapting to life with a newborn as well. Oh, by the way, we had another baby if you hadn't heard! He's great, but he's always keeping us on our toes and making sure we know when he needs something! He's got a great set of lungs on him.

Ari has continued to make great progress. He is now crawling! Now, let me qualify that exclamation. When he is motivated to get to something (mainly his mother!), he very skillfully can get into a crawling position and get to where he needs/wants to go. We're seeing it more and more each day and are excited at the fact he can more readily move himself about. He's also been pulling himself up at the couch, ottoman, and crib, daily! All of these things are huge progress toward developing the trunk stability and coordination needed to increase his mobility. He also has been more willing to taste food we sneakily place on his lips/tongue. This is a huge step because he previously would gag and vomit every time we'd give him a taste of food. We praise Jesus for this progress. For a while now we have not been able to see how it's going to be possible to re-teach him to eat and "like" flavors. Our prayer is just that it is a natural progression and growth over time. Meanwhile, he is tolerating his G-tube feeds wonderfully! We're beginning to introduce purees in addition to the toddler formula. So far, he is tolerating carrots and a spinach, lentil, and brown rice combo (yummmm)! Progress, progress, progress!

Our last blog post indicated his MRI was clear of any evidence of cancer. We continue to celebrate this news! We also had written that there was some excess fluid on the right, outer side of his brain. Unfortunately, this fluid space has somewhat solidified due to some minor bleeding over time. This means that the shunt is no longer able to drain it like it had previously been doing. So, our neurosurgeon has recommended surgery to clean the space out. The surgery is scheduled for this coming Tuesday, September 1st at 7:30 a.m. up at Doernbecher and will be his 9th surgery in his short 2 years of life. Dr. Baird has assured us that this is "minor" in comparison to previous surgeries; however, the reality is that it still requires access to our son's brain. Anxiety has been building as the day nears. One positive of the surgery is that since Dr. Baird will be accessing Ari's brain, she is going to remove part of the shunt system that is no longer needed on the left side of his brain and the Ommaya reservoir used previously to deliver chemotherapy. We are thankful to have some of the medical equipment removed from his body. Another celebration is that we are scheduled to get his Hickman central line removed on September 16th! Again, we are so grateful for progress and healing!

Thanks for all of your prayers, messages, thoughts, letters, and generosity. This weird, turbulent season would not have been bearable or navigable without your support, love, and prayers. We have been changed because of you. Thank you!