I get a lot of e-mails, direct messages on Instagram and Facebook, and comments asking questions about Brody. I’ve taken some time to answer those that I hear most frequently.

 

Q. When did you know Brody was delayed? Will my cleft-affected baby have development delay too?

A. He had his first evaluation at 3 months. At that time he was too young for us to tell where he was developmentally. We knew he was behind with feeding because he had his g-button but didn’t catch on to the other development until after he was 6-9 months old.  He continued therapy for OT, PT, and started speech after 9 months. NOT ALL CLEFT AFFECTED CHILDREN HAVE DEVELOPMENTAL DELAY. In fact, I know more cleft-affected children that are developmentally on track than those who are delayed.


Q. What does a typical therapy session look like?

A. There isn’t a typical therapy session… unfortunately with Brody timing is EVERYTHING. Once in a blue moon his therapists catch him in a good mood or healthy and it’s a lot of playing and positive reinforcement. He has 5 or so minutes of concentrated play then gets a small break and that continues for about 45 minutes.


Q. Where is he at developmentally?

A. He is developed differently in different areas. Physically he is right around a 12-15m old.  Fine motor skills vary from 6-12 month old. Speech is closer to 6-9 month old, and feeding is right around 6-9 month old texture wise.


Q. Is he done with surgery?

A. No, he will have anywhere between 3- 10 more. As his face grows and the palate extends, there will be touch-ups needed.


Q. He seems very happy in photos is he really that happy?

A. YES! He is the happiest little guy.  One common trait of children with chromosome 9 deletions is autism.  With how social and interactive he is we do not think that will be Brody. He will have further testing at his 2nd birthday.


Q. Is he eating better?

A. Yes and no. Brody’s desire to eat is there, where it previously wasn’t.  He still lacks coordination to chew and bite. His fine motor skills are also not caught up enough for him to self-feed.


Q. How do you do it?

A. I am asked this question the most frequently… Brody is my first born, I don’t know any different.  I don’t know what it’s like to have a child that is developing on time, that is not cleft-affected.  I had a vision of what my child would be, and Brody blows that child out of the water.  So… to answer the question, I don’t know any different!  I also have the BEST support system.

 

Please continue to ask questions; I’m always happy to answer them.  That’s what this community is all about – sharing what we’ve learned with other parents.  Like I said, I have the best support system and this community is included in that!