Therapies, Specialties, and Developmental Milestones

At some point we may go back and explain what has happened with Zoe for the past fifteen months, but for now, we are focusing on where Zoe is now. As we already said, one thing we found incredibly helpful as parents was other people's blogs that showed their child with 1P36 thriving and developing. So, for other parents out there, I just wanted to take a minute to say where Zoe is currently.
Zoe sees OT/PT and vision therapies on a weekly basis. Zoe sees an early intervention specialist on a monthly basis. Zoe was assessed for speech therapy and services are pending. We are fortunate enough to live in Canada where these services are free for us and are provided in our home.
In terms of medical specialists, Zoe is still followed by cardiology, nutrition, neurosurgery, orthopaedics, opthomology, audiology, ENT, and continues to have monthly weigh ins at her pediatricians office. Zoe was followed by genetics and haematology but has been discharged from those services.
We are very proud of Zoe's development and take every opportunity to brag about it. We also hope this list is helpful for parents looking for when to expect their 1P36 child to meet certain milestones. Here is a list of some of the milestones that Zoe has met:
7 weeks old- successfully breastfeeding so NG feeding tube was removed
5 months old- first responsive smiles
6 months old- started cereals and other solid foods
8 months old- consistent at batting and grabbing toys
8 months old- started using a sippy cup with the valve removed. Zoe has never been able to suck strong enough to get the milk out of a bottle (we tried every nipple out there but none worked for Zoe). So, at this point Zoe still breastfeeds and uses a cup.
9 months old- started to bear some weight on legs but mostly continues to keep legs crossed and pulled up into lap
9 months old- first coo and vocalizations (is still a very quiet baby)
10 months old- instant and consistent grabbing of toys
10 months old- reacted with fear to high pitched and loud noises
11 months old- paid attention to books when being read to
11 months old- shows interest in drinking out of mom or dad's cup
12 months old- able to bring sippy cup to her mouth consistently by self but not able to tip cup back for drinking
13 months old- able to play peek-a-boo
14 months old- consistently rolling from tummy to back
15 months old- first tooth
15 months old- able to manipulate two different objects with both hands at a time rather than playing at mid-line
15 months old- smiles at camera when we take a picture (inconsistent)
15 months old- insists on eating food off of mom or dads plate. Zoe still takes a very long time to chew so we continue to mash her food.
15 months old- rolls from back to left side
15 months old- will roll/wiggle body toward a toy that she wants
15 months old- will imitate "milk" and "all done" with hands consistently, will occasionally imitate "eat"
It is important to note for people working with or parents of 1P36 children that all of these milestones took many months of practice. Our children need a lot of repetition and practice before they are able to reach a milestone (example: we rolled Zoe for a year before she finally was able to do it on her own)
There are many skills now that we are practicing but Zoe is not yet able to do on her own.
Zoe is a very easy going and smiley child now. She laughs a lot and really enjoys being bounced or thrown in the air. Zoe continues to be on the small size- at fifteen months she weighs 15 pounds, 4 ounces and is 27.5 inches long. Zoe's head has not grown as much as her body since birth and is 15.75 inches in circumference. It is very common for 1P36 children to have small heads.