It's still January so its not too late to say that! Sorry we have been "away" from the blog - we had lots of holidays, which were lovely followed by a week of appointments for L*ily (5 total - 6 if you include the one that got rescheduled after we got there!)
So here is L*ily's update, and I have also posted some about the holidays so keep reading...
Last week, L*ily had 5 appts - 3 of which are related to 2 of what I've been referring to as "the big 3" - heart, ears, and brain. These are the areas L*ily needed additional follow up in. So Monday the 4th, we headed to the clinic in subzero temps to see the audiologist (ears) and then the pediatric cardiologist. When we arrived for the audiology appt, we were told the audiologist was not there (I found out later she got her schedule mixed up), and we would need to come back the next day to see her before our ENT (Ear, Nose Throat) appt the following afternoon. So, I read a magazine for the first time in a long time, pumped in the bathroom (lovely - sorry, TMI?) and went to the cardiology appt only to find out that they had the time wrong (my letter from them said a different time than their computer did). It was a long, crazy day and I was kicking myself for not bringing a book, but I did get lots of apologies, 2 free parking passes (it would have been about $7 with validated parking) and $5 to Brueggers Bagels - a perfect place for someone who can't eat wheat! (I got the soup instead).
HEART: L*ily had an EKG and echo-cardiogram, and then we met with a cardiologist. The echo showed that L still has a small VSD - a hole or a murmur. However, the EKG determined that the murmur is not affecting her heart's functioning. Because of this, the cardiologist said it may still close on its own and we don't need to come back for a year. She (the cardiologist) also shared with me that her cousin who is 40 days younger than her has Down's Syndrome, and we had a wonderful discussion about how her cousin has affected her life. L is a wiggler, so during her EKG, she would get the first of the prongs off by the time they got to the 6th or 7th. The nurse finally had to get another person to help!
EARS: L saw an audiologist for an ABR test and then she saw an ENT. The ABR tests her hearing at high, medium, and low frequencies by measuring brain waves. L had previously failed the newborn hearing screen in her left ear - twice. This time, she passed at the high and medium but not the low. It does appear at this point that if she has an actual hearing loss, it is minor. Both the audiologist and the ENT were pleased but want to retest her within a couple months because her small ear canals make it difficult to get an accurate reading.
L also went to her pediatrician for her two month check. She was 8 lbs 11 oz! She is gaining well - she is in the 4% for a 2-mo old and the 50% for the adjusted Down's growth chart. L showed off for her again - smiling, holding her head up, and even drooling - all signs that she is on track developmentally right now. The pediatrician kept telling me what a "good baby" I have and was so excited to see her hitting these milestones. We also met again with L's early childhood teacher from the school district. They will continue to come out once a month until L's 3rd birthday to help monitor her development, etc. D*ave was able to be there and L was awake for the visit this time, and it was nice to report L's developmental milestones to her. Our next meeting with them will be with the OT.
Yesterday, we went to the hospital for a follow-up ultrasound of L's brain to see where things are at with the ventricles that were enlarged before birth. We are waiting on the results of that scan. All in all, the appts went fairly well - it is hard not having definitive answers for much of this, but we are learning to rest in the unknown and we take comfort in the good reports so far and the excellence of care we are receiving.
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