Cassie and Chloe had appointments with the pediatric craniofacial surgeon at Children's Hospital on Thursday morning. Here's what the doc had to say.
Cassie -- might need a bone graft on the left side of her upper gum when she is 8 or 9. She'll also need a lip revision and possible nose revision at age 4. Other than that -- for now -- she looks great.
Chloe -- her lip repair looks very good -- but we already knew that. Her palate repair has healed well. The white spot on her palate is either food or a tooth. Since the spot has been there since we've had Chloe and her breath doesn't smell we are guessing it's a tooth. If it's a tooth, it will almost certainly need to be extracted. We'll let the dentist or orthodontist advise on that. Chloe will need a bone graft on her upper right gum line when she's 8 or 9. Right now it's not known if Chloe will need a lip or nose revision.
Either way, no surgeries for either girl for a while. This makes us very happy.
Both girls have an appointment with the craniofacial team to be evaluated on May 6th. We will spend a 1/2 day at the hospital -- starting at 7:30am -- and see an ENT, a dentist, an orthodontist, a speech therapist or doctor -- I don't remember now. They'll also have their hearing tested and see a bunch of other doctors and other testing that I don't remember. Then we'll take a short lunch break while the team goes over the results and they will come up with a plan for Cassie and a plan for Chloe. We'll then meet with the team after our lunch to hear the results. I'm sure this will be a really long day for everyone but at least we'll have a comprehensive plan for them when we finally go home for the day. Naps will likely follow. :)
We were very comfortable with the new doctor and will be using this doctor and team long term.
On Friday we went back to the pediatrician. Cassie and Chloe are both still wheezing, have coughs, and more boogies than I care to think about. Chloe also still has fluid in her right ear. We go back in 10 days to check on the fluid and pressure in Chloe's ear. Chloe is still having some poop issues, even with being on a dairy free diet. We have now added in soy yogurt to her daily diet and probiotic supplements. The doc also advised that we add white rice, bananas, and squash to her diet, so we'll be doing that too. If the poop issues aren't better in 6 days then we'll follow up with poop tests. I'll spare you the messy logistics involved in collecting a sample. Suffice it to say that we are crossing our fingers that we won't have to go there.
Chloe's blood work was also back. Her Hep vaccines from China are good but we'll be re-doing all her other vaccines. But not until the wheezing is gone. Hopefully, that will be on her appointment in 10 days. One of Chloe's liver enzymes is a little high but the other liver functions are all in normal range. So for now, no real worries. Chloe's red blood cells are slightly abnormally shaped. The doc wants to wait on this too and retest in 4 - 6 months once Chloe is adjusted to her new routines, her digestive issues are gone and we know she's getting good nutrition. If the rbc's are flagged next time on the blood work we'll do further testing to see if Chloe has a form of anemia. All Chloe's other blood work looked great.
It had been 7 days since we had last seen the pediatrician. At that time, the pediatrician observed that Chloe had almost zero muscle tone, and advised lots of "floor time", meaning that we should just let her roam the floor, crawling, getting up and down, etc. We did that, and she has made excellent progress. So much so that the pediatrician noticed and was pleasantly surprised to see such a dramatic change in this short time. That made us feel good. It's pretty clear that little Chloe will be walking soon.
For now we'll keep doing what we are doing and pray this cold virus flees soon.
PS -- I promise to add some pictures tomorrow.
6 hours ago