But my most favorite change is definitely our bedtime routine. I used to have to rock Lucy to sleep, about two hours, most of which was screaming. By the time she was asleep, I was so exhausted. Then we upgraded to rocking for a half hour, then about an hour of in and out of the room crying and rocking. Next was setting her in her crib and sitting in the rocker in the dark for half hour to forty five minutes, then trying to tip toe out. But now....we finish the nightly tube feeding, change into pajamas, play for a half hour and set her in her crib and walk out. I can't believe how far we've all come.
At the beginning of August we went back for our Cardiac Neurodevelopmental Clinic. Our first was at 12 months old and this one puts us at 18 months. We made great progress in most areas.
Here are her report cards:
Area: 12 month 18 month
report report
Testing Level
Cognitive (play skills) 10 mo. 14 mo.
Fine motor 8 mo. 8 mo.
gross motor 7 mo. 11 mo.
Receptive language (understanding) 10 mo. 21 mo.
Expressive language (talk) 9 mo. 15 mo.
Dr. Vanbergen and therapists were impressed with her demeanor, she was fast to warm up to all. Her progress in most categories was great. There were two concerns, fine motor which showed no progress and feeding tube. They suggested we transition from developmental therapy to occupational therapy to focus on improving fine motor skills. The feeding tube was a concern because g-tube surgery cannot happen after the fontan due to the possibility of being on blood thinners and we can't have the surgery too close prior to fontan in order to allow healing. Since we are delaying her 3rd stage surgery until she is three, we have some time. This news pushed all of us into high gear. I filled our speech therapists in following the clinic and we have decided it's time to start pushing Lucy to eat on her own. I truly believe if the tube is not out by our next clinic appointment in February, we will have to have g-tube surgery.
We will be working with speech and nutrition to systematically ween Lucy from her tube dependency. We have started by decreasing her 4 pm down to only two ounces. We have seen some slight improvements in her liquid intake. Lucy is consistenly taking in about 200 mL (or 6.5 ounces) a day. Doesn't seem like much, but back in March when we shifted our focus to her drinking Lucy was at about an ounce a day. My hope is we will be close to pulling the tube around Thanksgiving, but only time will tell.
After clinic, we had hour two month check up with cardiology. All looked good. Lungs were clear, the switch to pediatric formula seems to be working. We were granted a three month break and do not have another follow-up until November.
We will also have our yearly early intervention meeting this month. We will discuss all her progress and decide what services will need to continue and what we can start to decrease.
The other big news is we have started to look into some day care options. We feel that it would be very beneficial for Lucy to spend some time around other kids. I don't think we would place her anywhere until we have mastered her feeding, but it's possible as early as next spring we will be there. As you can see below.....being with other kids puts a smile on her face.
