We had a nice day with Andrew today. It was emotionally difficult, but we got to spend some quality time with him, and then we each got to hold him. After that, he took another field trip to radiology for a CT scan. They scanned his head and belly, looking for confirmation of neurological deficit in his brain and getting another close look at his digestive system. They hope to learn from Andrew by correlating his behavior with his brain status; they've already seen some abnormal behaviors, and they expect to see corresponding defects in his brain physiology. Hopefully this will help with prediction of outcomes and courses of treatment for future infants.
He behaved himself during the trip to radiology and back, and has been doing fine since. They haven't made any modifications to his ventilator settings, but he's comfortable and stable. We haven't heard from the radiologist about the test results, but I'm sure those will be discussed when we talk to the doctors again on Monday.
In the "piling it on" department, we took Willow to the vet tonight. She's been yelping a bit when we pick her up recently, and she's shown some delicacy in her running and jumping. After a series of x-rays of her back and pelvis, they discovered what looks like a compressed and calcified disk in her spine. It didn't seem as pronounced as it could be, and she is acting normally aside from this transient pain, so they didn't deem it necessary to keep her there or perform surgery. We got a prescription for painkillers and steroids to help her recover at home; now it's just a matter of keeping her from re-injuring herself.
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Even with all of your gifted writing, we cannot fully know what you are going through. So we will continue to pray for Drew and pray for you guys. Your love for each other is so apparent.
ReplyDeleteQz
Dear Jamie,
ReplyDeleteHow very difficult this has to be for you, but how blessed you are to have Drew in your lives. I continue to pray for all of you.
Mary (your mom's husband's cousin in Pennsylvania)
I know in my heart that as his loving parents, you know what is best for baby Drew. I love you all - and you are in my thoughts and prayers.
ReplyDeleteJamie and Danielle:
ReplyDeleteIn my profession, which is a newborn care specialist, child development specialist, I work with a lot of families and obviously, some of them experience what you are going through. It never gets easier, with one exception. Every baby I have met is a gift that literally freezes time, kind of like what you described when Andrew looked into your eyes. These are literally destiny fullfilling moments, and I don't doubt for a minute that Andrew has the best parents any child could hope for and the richness of this experience is not lost on you. The main reason I am writing to you is that I have seen babies defy even the most bizarre odds. There are so many elements to Andrews situation and I can only really address the developmental issues and a little of the neurological issues I have dealt with personally in the past. It's these things that I feel compelled to share with you. I have helped with and put together treatment plans for children that the neurologist had given very poor prognosis too. The parents would be told that the child would never walk, talk, eat, of have any kind of a normal life. In some cases,and the development of a long,treatment plan with many O.T., P.T., Speech, and other sessions per week for a year, or two, I have seen the brain do amazing things. A baby's brain is so resilient and so many of the pathways are not developed until the end of the first year. You may have been told all of this, but, I just feel that as far as the brain goes, there is always hope. As far as developmental challenges go, there is always hope. I have seen this first hand many times and continue to marvel at the ability of a baby to compensate, and respond to quality and loving therapy. Obviously, there is the physical element, and I can only say how deeply I feel for you. Andrew is truly a blessing and you are every bit as much of a blessing. You all are truly an amazing enhancement to everything that makes up the fabric of our lives. I think of you often.
I am Pat Graham's daughter, Karen.