Dr. Baird was able to remove the solidified fluid on the right side of his brain and said his brain rebounded nicely upon cleaning out the space. While in surgery she removed his shunt (holy moly!) and said that it wasn't doing anything at this point. She also was able to safely remove his Ommaya reservoir which the oncology team had used to deliver chemotherapy into. It's strange to think about the fact that this is the first time in almost a year and a half that Ari doesn't have some form of medical equipment or devices in or around his brain. We're so thankful for that! She did, however, have to leave a temporary drain inserted into the right subdural space following surgery. Her directions were to monitor the drainage while keeping him flat for at least 24 hours. Sure, no problem. Keeping a 2-year-old who just started learning to crawl should be no problem! Up to this point, when Ari had a surgery he was not mobile. So, we celebrated having to keep him still and busy. They did put arm immobilizers on him called "no no's" (http://www.medi-kid.com/index.php?p=product&id=3). These were mainly so that he wouldn't pull the temporary drain out. He was a champ! Overall, he was pretty drowsy and recovering from surgery.
The next day after much deliberation, Dr. Baird felt comfortable sending us home. She told us that his quick-brain MRI (that was conveniently completed at 2:30 a.m.) looked GREAT! Now, the work really began. We were to help him protect his head...rrrright! Ari is on the go all the time now! He's crawling everywhere, he's sitting up on a regular basis, and he's pulling himself up to the ottoman and couch. The truth is that he bumps his head from time to time. But, the doctor's orders were to protect, so, protect is what we will do...for 2-3 weeks! So far, we've done a pretty good job. Ari just continues to progress developmentally at a pretty rapid rate. We're so thankful for the progress!
On September 16th Ari will one more piece of medical equipment removed from his body. He will return to the same surgeon who placed his central line in March of 2014 to have it removed! Luckily, it will not require a surgery to take out, just an office visit. Again, we are thankful for each new step forward. In the mean time, we continue to adapt to being a family of 4 and having two boys with two different personalities. We are thankful for where we are in this journey!
Lastly, our good friend, Cecilia Woods, is organizing and producing a dance concert to take place at the beginning of 2016 here in Springfield, OR. The concert will benefit research for AT/RT and money earned will go to an organization called Cure AT/RT Now. She has created a Go Fund Me page to attempt to raise money beforehand to cover the cost of the venue and travel for the dance groups, so that, all funds raised during the concert can 100% go toward research. Also, if you were unable to purchase a "lion" shirt previously, we will be printing more for the event! If you are able and feel compelled, please visit the website (http://www.gofundme.com/themovementproject) and donate. Thanks!
Here are couple of pictures from the week.
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| This was Ari in the surgery waiting room prior to being called back. He was all smiles! |
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| Joylyn, our wonderful neurosurgery Nurse Practitioner and Meghan, our nurse who took great care of Ari after surgery, are standing by ready to remove the drain his in head. |
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| Joylyn removing the drain and stitching up his skin. |
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| This was that drain allowing the excess fluid to drain following surgery. |
