So, last week was the first "big" Dr visit. We saw the 8 primary Dr's and nurses who will be involved in Vanessa's surgery's and therapy. Didn't really change much, they told us much the same things we have already been told.
1~ she will have several surgeries.
2~She will likely need speech therapy.
3~ She will likely be getting a surgery again in her teens.
What we did NOT know...
1~ At this point, being over 2 months old, she is no longer a candidate for NAM. Frustrating? yes, but only because the NAM could have reduced the number of surgeries and improved results.
2~ Sometimes, reconstructive surgery messes up growth rates of the facial structure. As a result sometimes once a CLCP child reaches their teens, they need to have their jaw broken.... Really?
3~ YES she is getting ear tubes. Apparently she already has fluid retention in her ears.
Lets discuss those new things in more depth shall we?
NAM no go: O.K. to me, it's a case of why cry over spilt milk? It seems to be upsetting Tom more, mostly because he feels like not doing it means we are not doing EVERYTHING possible to help our child. I on the other hand think more along the lines of, "not our fault," it costs to much, is too new a procedure, and CCS doesn't cover it under normal circumstances.
The reason they say she is to old is because of a certain acid or some such that is really high in newborns. It makes it easier to shape the rapidly growing bone, cartilage etc. Once a child passes 6 weeks of age, the acid reduces, making it harder to mold and shape the growing facial structure. For NAM to work effectively, it must be started within 2-6 weeks of birth. That's what the told me, and I looked it up some more online, so I accept this.
Breaking the jaw? Seriously?: Yup, you read it right. IF her growth rate is effected by these surgeries as a child, she will need this procedure in her mid teens. Somehow breaking the jaw and resetting it will adjust things and correct her bite and such... I personally prefer not to think about that right now, in fact picture me as an ostrich shoving my head into the sand here.
Ear tubes: When? likely sooner rather than later. Sometimes they hold off and do it during her first corrective surgery. I got the impression they want do do it sooner. If ears don't drain proper, they can get infected. Infection can cause hearing loss, temporary or permanent. Either way, hearing loss will effect speech development.
This week::
I am still jumping through hoops trying to get approval for SSI that would allow me to stay home and care for her. We cannot afford a loss of income so its this or I go back to work... Not really a good option since we would need a day care for both girls once Tom is working. I would be working to pay the sitter. Besides, many Day cares won't take Vanessa due to her special needs.
Now, this morning I got a call from the nurse to set an appointment. We get to learn how to "tape." As in put tape on her face to start moving the skin and prep for the first surgery. Hooray... I guess. It is like the NAM, but for the skin only...
So, come on every body, here we gooooooo.
