So here we go.. For those of you who have been wondering what is going on with Painter. Here is the readers digest version!
When he was born he had a bigger tongue and also a "birth mark/ hemangioma" on his lip. Well we have been going to doctors for quite some time now trying to figure out what is is exactly. Well on Feb. 4Th we went and saw Dr. Rope down at Primary Children's. He is an amazing doctor, after sitting on the floor and playing with Painter he told us what direction we needed to go. So yesterday Feb. 24 we went and saw Dr. Grimmer who is a otolayngologist... Ear nose and throat specialist. He told us that Painter does not have a Hemangioma but that it is a Venous Malformation on his lip which in short, when he was born the veins in his lip malformed and caused that. The only treatment is when he is older we can have it lazered to remove the color maybe but nothing else really. His tongue is a Lymphatic Malformation, which is the same that when he was born the lymph vessels in his body malformed in his lip and cause it to be bigger. Also on his tongue he will get these white lumps/bumps on it and the doctor said that he can cause pain and bleed, which they do, He said to treat those that they take a razor and skim them off which will cause scars so that they will not grow back. He also said that if he gets sick or anything like that, that it can cause his tongue to swell more, which can inhibit his breathing and eating and so forth. So to be careful about that! He said that it is something we need to watch cause he snores and that means that is can cause breathing problems. He also was very sure that we knew that Painter is more of a minor case and that there are way worse out there, which is Wonderful to hear!! So ... we go back down on the 5Th of March, next Thursday for an MRI to find out what we are dealing with as far as size and if there are more internal ones in his head and throat. And then the doctor wants to see him again in 6 months and then we will do visits from there on out.
I need to say that as much worry as goes in to your children it is also a blessing to have some where to go and get answers and what a blessing it is to have people who can tell you what to do and where to go from there!
We are so Blessed that it is not as bad as some! Sure there are tons of worries that I have for him! Will it swell more like they say it can? Will more people say rude things about it? Will the kids at school be mean and tease him( which they will and the momma bear will come out!)? Will girls look at him different? Will he feel insecure about it? All i know is that we are lucky to have such a cute fun kid and that we will love him no matter what! He really is such a perfect child to us. I am SO glad to finally know what we are dealing with and that is really is a minor case!
8 years ago
