Brandon just got released a few days ago from the hospital after recovering from a nasty virus. Given his medical history, acute illnesses sometimes affect him worse than it would other kids. He is now doing much better and ready to move forward.
Today we had a follow up appointment at the Cleft Clinic. Cleft Clinic is where a team of professionals come together to evaluate various kids in different stages of their cleft repairs. The cleft team consists of a speech therapist, plastic surgeon, oral surgeon, genetic counselor, ENT physician (Ear, Nose and Throat), and a BCMH nurse (Bureau for Children with Medical Handicaps).
The speech therapist talks to you about feeding issues, speech development, etc... So far Brandon is doing well. Even though his speech is not clear, he is trying to communicate appropriately. The speech therapist tells me this is excellent. His receptive language is right on target; and as he turns three or four years of age, we will work more on his expressive language by getting him into speech therapy.
The plastic surgeon evaluates the various types of clefts and talks to you about when he feels your child will be ready for the different stages of surgery that they must endure to repair their cleft lip/palate. Today we were told that Brandon is doing fantastic and at this point he can be reassessed in one year.
The oral surgeon is there to discuss dental development and they are also involved with performing surgery around the age of 7-10. At this point Brandon's jaw/palate is in three pieces instead of one solid piece. Around the age of 7-10 they will do a bone graph where they take some of the "spongy" bone out of his hip and implant it in the crevices of his palate that still need fused together. Today the oral surgeon told me that the recovery for this is usually 2-3 months for his mouth. During that time he will have to have a soft diet - no biting allowed. It will also take approximately 6 weeks for his hip to heal, and he will have to refrain from any sports, stairs, or strenuous activity during that time until his hip is fully healed.
A genetic counselor is available to follow up with any questions from a genetic standpoint. Some children with clefts have an associated syndrome. A genetic counselor can link you with a Genetisist for further testing and evaluation if indicated.
The ENT doctor is on board as well. Many kids with cleft palates are more prone to getting frequent ear infections. They generally coordinate putting tubes in their ears when a child is having another surgery to help reduce ear infections until the palate is fully closed. Brandon already had his ear tubes put in as mentioned before when he was 9 months old.
Last but not least is the BCMH nurse. She is there to help enroll your child for assistance through the Bureau for Children with Medical Handicaps. Kids with clefts (and other diagnoses)qualify for this assistance for diagnostic purposes, which usually helps with medical bills for a few months while getting diagnostic testing done. After that it is the parents responsibility to apply for financial coverage through BCMH to include treatment. So far I haven't had much luck with getting coverage for his treatment. Brandon has gotten BCMH assistance a few times for diagnostic services, but it never carries over for treatment. Apparently, due to our income we haven't qualified for extra coverage, but I am in the process of reapplying due to added medical costs which include Brandon's growth hormone injections. I have been struggling with our governments healthcare system for some time. My child can have the same diagnosis as another child. That child's parent(s) may not work and therefore they would qualify for assistance. Then there are families like mine where both parents work and you rack up tons of medical bills, but are told you don't qualify for extra help because you make too much. These medications, surgeries, and treatments still do not come cheap and even working parents can struggle sometimes.
Overall, we had a good visit today. No more surgeries on the horizon for some time. Next stop is Brandon's 18 month well check in two weeks and then off to U of M to see the opthamologist again.
I'd like to give a special shout out to Allison. Allison is an 8th grader here in Toledo who took the opportunity to acknowledge Brandon's journey in one of her school assignments. Allison was to pick a story and make a book out of it. She researched Brandon's blog and information about his medical conditions, made it into a little book, and shared it with her class. I have the pleasure now of having this book as a memento and am pleased to share that Allison received an A+ on this project. "Way to go Allison... and thanks for taking the time to share this information with the younger population!"
