This morning Guy and I took Grace to her 1 year follow-up with her specialist at Baptist Hospital in Winston Salem. She is doing as he would expect (which is great to us!). We have learned what will be Grace's norm after living together for a year. She will have periodic flare ups on her tongue causing swelling and the cysts to fill with blood and bleed on occassion when her body is fighting something off. Obviously we wish she did not have this to deal with but this will be her "norm' and at least doesn't impact her day to day and we will help her deal with it the best we can when the flare ups do come. She is such a trooper really and doesn't let much slow her down!
We will see him again in a year. Annual check-ins should be all we need just to ensure no change. The things we would watch for if the lymphangioma got larger on her tongue and impacted her sleeping (sleep apnea) or her speech. If all goes as it has (which we are claiming!) and her tongue doesn't ever get larger we should be fine. Otherwise we look at surgery of the tongue which is not ideal so we aren't going there.
For now, we are going to set Grace up for appointment with speech pathologist just to see if she is doing what a 3 year old shoudl be, if there is annunication they can help with or if they feel her tongue is impacting her speech at all. If that is the case, what Grace has is so rare may not be someone that knows how to deal with that specifically..but hey God has already gone before us right..and we are trusting in that .
Well, it sounds like you are trusting in the great physician to care for your daughter,, HIS daughter!
ReplyDeleteHow fun if Grace can go to China with you!!