As some of you may have seen on my Facebook page, last week Nora had a Cleft Care Team appointment. After a lot of prayer and consideration we decided to switch Nora’s cleft care over from Gillette Children’s Hospital to Children’s MN. We are grateful for the care she received at Gillette but we are now focused on a long-term strategy and felt that this was a good time to make the change. Last week we were on boarded at Children’s with a 5 hour appointment. Nora was evaluated by speech, dental, audiology, and pretty much every surgeon who will work with her in the coming years. Overall it was a great experience and we were impressed with how well this team of doctors collaborates. Here is what we learned:
- Speech: We were excited to learn that Nora’s speech is on track that of the average 2 ½ year old, which is impressive for a cleft kiddo. At this time they don’t expect her to need a speech surgery, but we will continue to evaluate her progress every 6 months to be sure.
- Audiology: Nora passed her hearing test in both ears, however they looked and found that the ear tubes that were placed at 4 months old have dislodged but have not fallen out yet. Most ear tubes will work their way without intervention, so at this time we will just wait and see. They also noticed that one of her ear drums has a small hole. They assume it will close up on its own, but will check it next time we are in.
- Dental: It’s time to get Nora enrolled in a pediatric dental program. (I know, I know, she is almost 3 and we have never been to the dentist, shame on Mom.) Her teeth look good for now but could use a good cleaning. And since she will have a lot of dental work needed over time, it’s will be good to get her used to it. We learned that she is missing 2 baby teeth on top but it is common for cleft kids to be missing teeth so we will just have to wait and see what is there for adult teeth in a few years.
- Surgeons: All in one room we had the plastic surgeon, ENT, Orthodontist, Oral Surgeon and Restorative Dentistry (they would implant teeth if any are needed). It was a full room and at naptime, so Nora was a tired little girl, but also very corporative. J They walked us through the next couple of surgeries they believe are needed:
- Columella Lengthing – Nora’s columella (the skin between your nostril holes) is pretty small, which means that her nose holes are pretty small, which means it’s hard for her to clear snot and boogers from her nose. Most of the time this isn’t a problem, but when she gets sick or the weather changes (specifically during the winter) we notice it more. Her nose will continue to fall lower as she grows so this means that her next surgery will take place in the next 1-2 years to lengthen her columella and lift her nose a bit higher. They prefer to have this done before she goes to Kindergarten.
- Bone Graft – This is the next really big surgery. Right now, her upper jaw is in 3 parts. The center part that was out of her mouth at birth and her left and right jaw line. The bone graft will complete her jawline and allow her teeth to grow in “properly”. They will start to prep for this surgery when her 6 year old molars come in by putting expanders on her upper jaw to create space and to align the 3 parts of her mouth into a U shape. Once this is complete, they will go in and do the bone graft, which they expect to do at 7-8 years of age. The bone for her jaw will be taken from her hip. The really cool part is that after about 4-6 months the bones will have fused together and will be one complete bone/jawline.
We left the appointment feeling relieved that we now have a plan in place. I am so thankful that her speech sounds good at this point, I am relieved that she passed her hearing test and I appreciate the great team at Children’s who are already collaborating so that Nora’s next surgeries will be successful.
I was looking back a pictures of Nora the other day and I was amazed at far she has come. Like most Moms of cleft kids, I worried about what she would look like and how everyone would react to her. But the moment they placed her on my chest after she was born, I instantly fell in love with her. Everything in me wanted to hold and protect her from the world and she knew she was safe in my arms.
The next 4 months were filled with doctor appointments and retainer changes, but she quickly became the center point of our family, changing everything about us: Stella was now a big sister and seemed way bigger now that Nora had arrived. Mike and I were learning what it was really like to bring an INFANT home (since Stella didn’t come until she was 3 months old) and even the our dog, Jozee, had to learn to share her favorite couch spot with Nora and I. By the time we had gotten through her first two surgeries (her first lip and palate repair), Nora’s cleft was just part of who she was and we rarely even notice it anymore.
Today, I watch Nora and am amazed at the beautiful little girl she has become. She is so silly, always looking for ways to make us laugh, but also extremely sweet, learning to share much better than her sister does and always the first to give us snuggles. While we know that her defect is more of a marathon than a sprint, we are already so proud of her progress and of the “Big Girl” she growing up to be. 🙂
Be joyful in hope, patient in affliction, faithful in prayer. – Romans 12:12 (Nora’s Life verse)