Hi guys!
We have a few Zeke updates we wanted to share. First of all, everything is looking good for his upcoming surgery. We had our pre-op appointments with both the surgeon and the hospital and everything went smoothly. The surgery is scheduled for next Monday at 7:30 AM. We will have to be at the hospital at 5:30 AM. We ask that you keep Zeke in your prayers--pray for the wisdom of the doctors, peace for us as his parents (we're both really nervous), and we ask that you pray that Zeke will stay healthy between now and the surgery. If he gets so much as a common cold, the surgery will have to be postponed as the risk of infection and pneumonia would be too high.
Zeke also had an appointment with the opthamologist and as you can see from the above picture, we have started patching his eye. The opthamologist was very pleased with the visual progress Zeke has made so that was a major praise report. He isn't blinking any more than he was the last time we were in, but we've been successful with keeping his eyes lubricated with artificial tears so that was also a praise.
We also had an appointment with Zeke's urologist and he had a test run to see if his bladder is still refluxing at it is. One option we have is for the urologist to do the corrective surgery again right before Zeke's cranial surgery under the same anesthesia. We are prayerfully considering this option and plan on talking with the plastic surgeon and neurosurgeon about any risks this could bring about. We are currently treating the reflux with an antibiotic.
Zeke's feedings are going fairly well. He seems to be tolerating larger amounts at one time without wretching so that is definitely a good thing. But night feeds have been a struggle lately. He's been waking up during the middle of the night so we've had to unhook him from the pump and he's been missing a large portion of his feeds. It's turned into many times a night here lately so we've decided to temporarily take him off of the pump to get him of the habit (which we believe it's become) of waking up during the night--then we'll start to reintroduce the pump again. It may cause him to loose a couple of ounces, but I think it will be worth it in the long run. His oral feeds have also improved some. He's taking several ounces by mouth during the day and even doing some really good sucking. And if you'll notice in the above picture, he even ate a cookie! We always offer Zeke whatever we are eating (tortilla chips, pretzels, even a pickle!) but he never has much of an interest in putting anything in his mouth mostly due to his oral aversion. But Friday we were eating Chinese food and offered Zeke a fortune cookie which he put right into his mouth!! I replaced it with a Gerber biter biscuit and he at about half of it! I tell you, we were so excited that night you would have thought we'd potty trained him! :-P
Zeke had an in-home evaluation for CAP-C (which would give us nursing and Medicaid) and it's looking like we will qualify! I should hear something more this week--I'll keep everyone updated as we gain new information.
We also have another praise report--Brian got a new job which he will be starting after Zeke's surgery. I'm going to finish out the school year, but then I will be at home full time with Zeke. Although I'm going to be a little sad about not having Brian home as much, I'm excited about staying home full time with Zeke and being more involved with his therapies, etc.
Thank you all for your thoughts, prayers, and friendship.
Brian, Melissa, and Baby Zeke
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