Next Steps

Another question we are frequently asked is "What's Next?"  

It's a valid question because, as I have said previously, we are IN a "long-haul-endeavor" and we still have quite a ways to go.  Over the next few months, we will hopefully continue with the forward-progress we have been making.  
  
Both Jonah and Rees will have surgical follow-ups and Rees will have a post-Op CT to determine what changes have occurred with his skull.  I am very excited to see these images that will include a view of the Distractors that are currently in place.

This month Jonah will have several teeth extracted at the Orthodontist's request whom he continues to see once a month.  His teeth ... well, they are just all over the place and as they work to align his jaws/bite while working with the structural challenge presented due to the type of cleft he has, there are just some teeth that are going to be a problem.  He has a couple of mesiodens, which are essentially "extra teeth".  One of those will be extracted for sure, but due to problems with some of his other teeth, another one may become a primary tooth down the road.  It depends on whether or not they can salvage a few other questionable teeth.  The two teeth that are furthest back on either side of the upper jaw will be extracted ... because the cleft went through his jaw on both sides, those teeth are sort of "floating".  One of them is already very wiggly so will not require too much effort to remove.  Jonah also continues to receive speech therapy in school as well as outside of school each week.  At the end of March, he will have an outpatient surgical procedure.  This will be to do another round of steroid injections into the hypertrophic scars (very thick and raised) that were left behind after his mandibular distraction last year.  

We also work hard every day to narrow the academic gap between our boys and the other children they attend kindergarten and first grade with.  They have REALLY made a lot of progress and we are SO PROUD of them but we still have a lot of work to do before they are able to navigate academics/homework on their own. 

In April, we will have another surgery but this time is it not for one of the boys, it is for one of the girls.  Yep, it's FINALLY Brynn's turn.  Brynn was born with an encephalocele similar to Molly, however, it was much less severe.  It slightly affected her skull formation, but mostly affected the area of her left nostril as she was born without it fully formed.  She did have one surgery in China, at the age of six months, to remove the external portion of the encephalocele and to repair the nostril.

After being in the USA for a year, Brynn had a surgery that involved a bone graft (using bone from Brynn's skull) and a cartilage graft (using cartilage from Brynn's ear) to correct the deficit in Brynn's nasal structure.  She did great and for a long time, we could hardly notice that there had even been a defect at all. 

As she has grown, though, the left side of her nose is not growing parallel to the right and her nostril is effectually collapsing, or at least gives the appearance of being collapsed. Her facial anomaly is fairly minor, however, it does bother her at times, especially if someone asks her "what happened to your nose?"

So, even though she is still growing at this point, the reason we are moving forward with an adjustment for her now is because of the impending retirement of our craniofacial surgeon.  

Then, towards the end of May, Rees will be back in surgery to remove the distractors and likely replace them with "permanent" hardware.  Permanent doesn't mean forever, but it will be placed for at least a year to give his bone more time to heal, grow, and fuse together.

At this point, we do not know when Rees will have the bone graft for his nose but perhaps, we will discuss possibilities when he is seen later this month.  Right now, we're just so thankful that he is feeling so much better and that our fun-loving boy is "BACK!"