I also had a LONG talk with Hope’s coordinating doctor in the craniofacial department. She is the one that makes sure all the doctors are on the same page and that other departments/specialist/doctors are pulled in as necessary. The long-story-made-short is that we are going to put off her facial surgery for another year. There are several concerns on our part - the biggest two are her nutritional health and her emotional health. Although she is growing and has put on weight, it is not as much as would be expected. Eating is still a real battle withe her.
So, we are going to see a speech specialist the end of June (speech therapy involves anything to do with the mouth - so eating falls into that category) to try to work on the eating – which I am pretty convinced actually has no physical root to it. That does not make it any easier to try to figure out, but it means that no surgeries have to be done to help it, if that makes sense. She spent 5 years only eating blended foods and she has no chewing motion whatsoever. She is also very, very determined to control whatever she can in her environment (something she had to do to survive) so she is not interested in "working" on it. I have started to add oatmeal to the blended foods we make for her (after we have blended it) just to add texture. She has no difficulty swallowing - she is just very unhappy with it. Baby steps. The eating also seems to be her way of expressing her unhappiness with anything new. If any thing - even something little, like changing her spoon - happens, she clamps her mouth shut and will not eat or drink willingly. Even with something that has nothing to do with food. I am looking forward to getting some good input on how to work with her - knowing her limitations (if any) and abilities will go a long way in helping with that. The doctor also wants to have her pituitary gland checked to be sure there are no issues there. None have been indicated by previous blood tests, but it is just one more thing to be sure that we know as much as possible.
We are also going to see a neurodevelopmental specialist to try to gauge a little better where she is at cognitively. It is very hard to really know how much she understands. Most of the time I am convinced she is very aware and understands way more than she lets on. But if that is truly the case, that what do we do to unlock the cage she is in? Again, the more we know about her limitations and abilities, the more we can help her. I did tell the doctor that I was very afraid that she simply would not cooperate She responded that the specialists were used to that - and it would at least give a us a little more focused point to work with. Hopefully, that is the case. We still need to get that appointment on the schedule – but I am assuming some time this summer. I feel like we need to get as much input as possible to try to frame a plan for her care. She is getting much friendlier with everyone – even new people. She is moving around a great deal and even pulling herself to stand. That is all worth praising the Lord over – but wanting to see her continue to grow and thrive. Honestly, constantly battling the anger and heartbreak over what was done to her.
I am breathing an emotional sigh of relief that we aren't going to have to go through the surgery yet....but want to be able to open the world up for my little girl.
Mama V, still need to finish our story of going from 4 to 7....going to get to that. :)
To Him be all glory and honor and praise.