Hudsyn attended her first “Cleft Clinic” today – and she rocked it! We started first thing this morning with a Speech-Language Pathologist at the John W. Keys Speech and Hearing Center. They asked lots of questions about what she does and doesn’t understand, do, etc. Then they attempted to get her to repeat words they said but about all they got was an ornery grin and “Nnnnnooo!” in her sweet little voice. They were impressed/happy with her language and ability to understand and communicate but definitely want to work in her speech. The Speech Pathologist recommended that Hudsyn start having specialized speech sessions to work on specific sound placement. They are hoping to encourage correct speech so she won’t develop bad habits that will be hard to break in the future. She has developed some compensatory misarticulations because of her inability to close off her mouth from her nose and create the pressure needed to produce certain sounds. For example, she says “Gye” instead of “Bye” because she struggles to create enough pressure to make the “B” sound. They are hoping to correct these misarticulations and prevent her from developing others. So I will start checking into further speech options for her at least until she is 3 and can start receiving speech therapy through the public school system. She will still be able to get 1 hour a month through SoonerStart but we will need to look further for the additional time recommended.
Next we saw the audiology team who performed hearing tests in the sound-proof room. Two sweet University of Oklahoma audiology students played with Hudsyn and tried so hard to encourage and help her pass the hearing test in both ears. Then their supervisor came in and talked with us about her hearing and how the testing looked to her. She suggested that we talk to the ENT before deciding anything but really felt like the “out of normal range” reading was probably due to some fluid buildup from the ear infection she had 3 weeks ago. She didn’t see anything that she felt we needed to be worried about at this point.
Next we walked across the street to the University of Oklahoma Health Sciences Center & Allied Health Clinics where we saw the remaining doctors/disciplines. The clinic is held in one of the University of Oklahoma College of Dentistry’s classrooms so there are lots of dental stations set up around the room and each patient and his/her family sits at their own. The professionals walk around and visit with/examine each patient, write recommendations, and sign off for each individual.
Hudsyn’s Oral and Maxillofacial surgeon, Dr. Smith, said she looked great and there was nothing he would recommend doing at this point. When she is around 4 years old they will start to watch and evaluate her more closely to determine whether she will need a surgery to help with the development of her speech. If needed, this surgery would elongate her palate and should eventually make it easier for her to form certain sounds. If she does end up having this surgery, he said he would probably open up her left nostril a little more to make sure she doesn’t run into issues because of it in the future. Unless we have an issue, we won’t see Dr. Smith until Cleft Clinic next year.
Both a pediatric dentist and an orthodontist introduced themselves and looked at Hudsyn’s teeth/mouth. She is obviously too young for any type of orthodontia but the dentist suggested we get her in to see a pediatric dentist a little closer to Guymon to get her acquainted with the dentist and their staff. Prior to attending the clinic, I was under the impression that X-rays would be done in order to determine what teeth she does/doesn’t have in her gums. Apparently, however, that is something we will want to talk to the pediatric dentist that we get her in to in the future about.
Dr. glade, her ENT, checked her ears and confirmed that there was fluid in her right ear because the tube he placed in it just over a year ago had fallen out. He was confident this was at least partially the cause for her lessened hearing in that ear. If we lived closer to the city and could come in for check-ups more frequently he said he would likely wait until the left tube came out and replace them both because as long as she has one properly functioning ear it will compensate for the other. However, since we live so far away he wants to be more aggressive and go ahead and put a new one in. When he does he will remove the left one and replace it also so we will be starting fresh. Tubes typically last about a year and most cleft lip/cleft palate affected kids need tubes until they are 5 or 6 years old so this likely won’t be her last set. We will get that quick surgery set up and out of the way soon.
We also spoke to a genetic counselor who took a brief family history and talked to us about genetics and the role they may or may not play in the presence of cleft lip/cleft palate. Without further testing it is fairly safe to say that Hudsyn’s cleft was caused by a combination of genetic and environmental factors that could not be predicted or prevented. I spoke to her somewhat extensively as I still struggle with feeling that I should have done something differently when I was pregnant with her. Although there are some studies where scientists are attempting to link cleft lip/cleft palate to certain medications and other specific factors, there is still truly not much proof of any of these.
A patient advocate, who is also a cleft-mom sat down with us and asked about our life, support system, community, and ability to cope. Although we have a wonderful support system and community, I know that not everyone does. I am so glad this is available for individuals who are struggling to deal with their child’s medical issues. She was super nice and gave every parent her phone number and encouraged us to call or text any time.
We got done about 12:15 pm and for all that she went through Hudsyn did SO good. There may or may not have been a significant amount of bribery with “gummies” and the iPad a few times, but we made it! She is not a fan of doctors as a general rule so I was pretty anxious about how this would go. I’m so glad we survived and kind of know what to expect in the future now.
Sometimes I still struggle with the fact that this is something my baby girl will have to deal with forever. Today, however I was quickly brought back to reality sitting in that waiting room with all of the different little kids affected by the same situation in its’ different severities. Children with various syndromes, feeding tubes, hearing aids, difficult/unsupportive parents and so much more remind me how lucky we truly are to be Hudsyn’s parents and a part of our wonderful community. God is good all the time.
