This post is extremely overdue.
We took the girls to their developmental follow-up appointment on December 5th. These appointments are always days when I hold my breath, pray my girls are in good spirits and try not to be reduced to tears when hearing about all the "issues" Adeline could have down the road.
During the first hour or two of the appointment, both girls meet with psychologist. This portion of the appointment has been rather hard for Adeline in the past. It requires her to sit up (mainly unassisted) and perform certain tasks. This appointment was the first time Adeline could sit independently which significantly decreased her work of breathing etc. This allowed her to concentrate on the task.
After reviewing Adeline's chart the psychologist felt it appropriate to start her line of questioning with, "Can she sit up?" I was happy to report that she could sit up, roll over, commando crawl and pull to stand. This was an obvious surprise. Adeline then started her testing and to my relief was in good spirits. She smiled and babbled, listened and tried to perform while at the same time was her endearing self. Of course, after an hour and a half of being asked to "find the car," and "put the block in the cup," every baby starts to show signs of disinterest.
After both girls were done testing we were given a report of their progress. Lila, as we expected was a super star and showed no clear signs of delay. Of course, they are correcting both girls when they assess them and therefore, on target would mean 12 months, not the 15 months that they are. We were told, "You would never know Lila was a preemie - we just can't believe how well she is walking - she is strong."
Adeline's report was a bit different and a huge surprise. . .
"Adeline's developmental skills are progressing well, and she has made a number of gains since her last assessment. Her cognitive, play , receptive language, fine motor, behavioral, and social-emotional development are currently within the expectations for her adjusted age. Remaining areas of delay include expressive language and gross motor skills."
Translation. . . she actually fell within the NORMAL category!! Granted it is the low end of normal but I will take it. I was so proud of her. Never have we heard someone step out and say, "She is in the normal range" with anything. "Delayed, slow progress etc." is what we are more accustomed to. I was shocked and relieved. So proud to be her mom!! She has worked very hard for this report.
I still fee that it is important to point out that Adeline is still behind. There is no doubt about that. There is a range for specific domains of development. For example, it may be normal for a child to walk any where from 9-15 months. That would be our girls. Adeline closer to 15 months and Lila closer to 9. When watching them in the same room, the difference in their development is notable. Lila Grace, walks, climbs falls and doesn't miss a beat. She says, Ki Ki for kitty, uh-oh, Elmo, all done, and signs for more. Adeline, is just starting to cruise, crawls slowly and babbles da-da and ba-ba. We hope for her to start to move from the low range of normal to an average range.
We aren't quite there yet, and Adeline has a lot of WORK ahead of her. There are questions about her leg and why it turns out when she stands. Cerebral Palsy has not been taken off the table yet. Speech is a concern and the fact that she is reluctant to eat table foods troubles some.
I become less troubled over time. This is who we are - who they are. I can't change it. For the most part I wouldn't change anything. There are moments when I get caught up in my girls and prematurity is so far from my mind. My frustration and stress is rarely linked to their prematurity these days - more toddler related "moments." For the most part I feel "normal." Well, as normal as I can with 4 therapists in my house and 8 hours of weekly therapy for the girls.
Figured I should mention the following to those of you who don't get to see the girls. We don't look normal - (Adeline is smaller than a 7 month old and Lila is no where near a 16 month old in size) - both girls are still in their infant car seats. Adeline is 17 pounds and Lila just hit 20. Not bad when you consider where they started and how hard they work to hit their milestones.
Thank you for your thoughts, prayers and well wishes leading up to this appointment. We are so lucky. There are no words to describe how amazed I am when I look at pictures of the girls during their first days of life while at the same time letting the word "normal" sit in the back of my mind.
Congratulations girls!!! You couldn't have made me more proud!!
