Today we chat with Brooke!
Hello Brooke, can you tell me about your family?
We are a family of 5, my husband Shane, Kali, Kera and Kasi! Kali and Kera are 6 year old twins, Kasi is 1 1/2 years old! We live in Avis, PA! I’m a stay at home mom!
Can you tell me about your daughters who have cri du chat syndrome?
Kali and Kera both have cri du chat syndrome! We found out Kera has 5p- when she was 7 months old and we found out Kali had 5p- when she was 10 months old! Kera is our adventurous one, she crawls, walks with a walker and recently started walking with one hand held! She is nonverbal and not potty trained yet! Kali is more content being left alone playing with toys that play music and light up! She doesn’t crawl or walk! She had corrective surgery on her foot in Feb 2015 and we are using an up and go to try and get her walking! Kali doesn’t do anything on anyone’s terms but her own, some days we can get her to walk in the up and go like she’s been doing it for years and some days she acts like she has no clue what she is supposed to do in it!
Tell me about doctor appointments, therapies and/or school?
Our doctors appointments for the most part have dwindled off! Kera still sees her neurodevelopment doctor every 6 months because she is on risperidone, Kali sees him every 2 years! They both see there PCP every 6 months still! Every other doctor, orthopedics and cleft clinic(Kera), we see once a year! Their ENT dismissed us now that Kera doesn’t have ear infections anymore and Kali got her tonsils and adenoids out! We drive 2 hours for orthopedics and cleft clinic, 1 hour for our neurodevelopment doctor, I did research and found the best doctors closest to us for the girls! They get PT, OT and Speech in school and then I take them to outpatient PT and OT once a week and I take them to Penn State University once a week for speech also! They absolutely LOVE school, they love being in their mainstream classrooms with all of their friends and they love being in their multidisabilities classroom too because they get to be on the floor and do what they want for a little bit!
Cab you tell me a success story?
We FINALLY got Kera to walk with one hand held, after years of trying! We are getting Kali there, like I mentioned above, she is our stubborn one and only does stuff on her terms and nobody else’s!
Is there anything else you want the world to know?
Our kids understand more than people think they do! Just because they are nonverbal doesn’t mean they don’t know what you are saying to them! If we are talking to them and tell them something funny they will laugh before we do!
Thank you Brooke. Your girls sound lovely, I hope to have a chance to meet your family one day!