In April 2013, our 7 month old son, Emory, was diagnosed with anaplastic ependymoma, a rare brain tumor. Since then, Emory has had surgery to remove his tumor and is currently undergoing a Headstart chemotherapy protocol in hopes of delaying or avoiding radiation therapy. We hope his chemo will cure him!.
Emory is our beautiful baby boy. In mid April 2013, at about 7 months old, his dad noticed that Emory was consistently tilting his head to the right. After dad found the term "torticollis", meaning "twisted neck", through some online research, his mom took him to see the family doctor a couple days later. We expected Emory to need some physical therapy to straighten out what we assumed was a muscular problem.
Dec 1, 2013 2:12pmEmory has now been home for about a month and has made so much progress. He completely switched to G-feeds about two weeks ago and is still gaining weight nicely. Now that he is feeding into his stomach, we have been able to turn up his feeding rate and reduce the time he is tethered to his pump to about 16 hours a day. This gives him more time to play and move "normally."
Emory set a record of 36 hours with no vomiting (he sadly broke his streak yesterday morning). He has also started to show some interest in bottles of water and baby cereal. He can eat or drink about an ounce at a time. This is great news since he hasn't even started bolus feeding yet.
Last Wednesday, Emory had a big checkup at the hospital. His dietitian was very pleased with his G-feeding, so we had the GJ-tube switched out for a standard G-tube. Hopefully this will reduce the frequency of vomiting since Emory won't have tube passing through his stomach into his intestine. Older kids with J-tubes often complain about discomfort associated to having a tube wrapped up in their bellies. Emory's blood work showed an increase in platelets for the third time with out a transfusion. As a result, Emory has his PICC line removed since the doctors were confident he would not need anymore blood products. Emory's blood stream is plastic free for the first time since April! For us, this makes bath time easier since we won't have to worry about getting his lines wet anymore. Emory also had a GFR done (kidney test) and his kidney numbers were in the normal range! (although not as good as before his kidney damage). We were very pleased to hear this since sometimes kidneys still fail a few months after an apparent recovery from an injury like Emory's.
On the motor skills front, Emory is close to a few milestones. In particular, it looks like he might start crawling any week now. He can almost push up to sitting from lying down as well and enjoys standing with support too. Considering he couldn't even lift his arms or turn his head 2 months ago, this is amazing! Andrea and I haven't baby proofed the house yet, but it looks like we'll have to very soon. I hope everyone had a great American Thanksgiving! Thanks for the thoughts and prayers!
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