Here is the latest on little Emily Rose:
She had an appointment with the neonatologist this week. At this appointment, we met with a doctor and an occupational therapist. Aside from a basic physical, they did an hour long evaluation of Emily to determine what kind of therapy she will need now that she has left the NICU. They checked her vision & hearing and her motor skills, muscle tone & strength. They also asked me about any concerns that I had. Based on all of that, they send a referral to First Steps. It is a wonderful program! Basically the therapists will come to our home to work with us. They will teach us exercises that we can do with Emily on our own.
Our main concern with Emily has been her eating. Not only does she avoid the bottle like the plague, but she has a very hard time at every feeding through her tube. We feed her every 4 hours and it is not a fun experience for any of us. If she is awake during her feeding she is usually crying (OK, really screaming) and wiggling around making it very difficult for the formula to go down. And if she sleeps through the feeding, she will wake up screaming. Most of the time, her crying spells will last for about an hour, either during her feeding or after. We think she is in pain from gas. Since her surgery, she cannot burp, so she has to “burp” through the feeding tube. With the original feeding tube she had, she seemed to be able to do this pretty easily. Since that tube came out & they put in a new one, she has a very hard time burping. It is awful to know that our daughter is in pain and we cannot do anything to help.
The end result of the evaluation with the neonatologist & therapist is this: we will be working with a nutritionist, a speech therapist, a physical therapist and a group called Visually Impaired Preschoolers (VIPS). The nutritionist and speech therapist will work with us on the eating/feeding problems. Emily needs physical therapy because her muscle tone and strength are not what they should be. One side of her body is stiffer than the other & does not move as well. She also turns her head to one side and this has caused some stiffness in her neck muscles (this affects her ability to lift her head too). And her vision seems to be impaired too. They said that her vision itself seems OK, but it seems that her brain does not “register” what she is looking at. VIPS will come to our house to do their own evaluation and then work out a plan based on what they find.
The interesting thing about her vision is this – we went to the ophthalmologist afterwards and he said the same thing after only spending about 5 minutes with Emily. He said it is not uncommon in babies her age for the brain and eye to be out of sync. She may grow out of it or she could have vision problems for the next 95 years (his words, not mine). As with many other things in Emily’s life, we will have to wait and see. I have to be honest, I am not really sure how they know that her brain is not picking up on what she is looking at, but they both said the same thing without knowing what the other thought. Her vision problems were a shock to us. Mike and I had no reason to think there were any problems there. She watches the bears on her mobile go around, she will look at us, stare at the TV or the ceiling fan in the living room. We just didn’t think there was any issue other than the fact that her eyes will go back and forth really fast at times (which was the reason for the appointment with the ophthalmologist in the first place).
These appointments can be a little tough to take. The doctors are painfully honest. At the neonatologist, I was told Emily will have some pretty significant challenges, but they want to help her to do as much as she can (from the tone of this statement, the doctor doesn’t think that will be very much). For me, accepting the fact that my daughter has cerebral palsy has been a process. I take in a bit at a time. And I think there are times when I am in denial. When I see her at home doing things that I think any other baby would be doing, it is very easy for me to put it out of my mind. So hearing such brutal honesty can be like a punch in the stomach. On one hand, I need to keep a realistic view of what Emily’s life will be with her diagnosis, but on the other hand I don’t want to set limits for her. And I certainly don’t want to set limits on God. I don’t know what He has planned for Emily. I just know that I am going to love Emily and do everything that I can to help her to reach her potential (whatever that may be).
God has already used Emily to touch many people and I am so thankful. I know that Mike and I learn something new every day. We are learning to appreciate the abilities that we take for granted (walking, talking, seeing, etc.). We are learning about the sacrificial love of parenting - for 2 selfish people this is a tough lesson to learn! As we approach Christmas, I have been thinking about the sacrificial love of God. He selflessly sent His only son to earth, not to be remembered as the cute little baby lying in a manger, but to be remembered as the perfect man who died on the cross for the sins of man. What an amazing thought! I cannot stand to see my daughter cry in pain because of gas, but God was willing watch His son endure torture on behalf of His children. What an incredible God we serve. He knew our greatest need was a Savior and He gave His own son to meet that need. So as you shop for Christmas gifts for family & friends, I hope that you will remember THE GIFT that was given to meet your greatest need.
In HIS strength,