crazy times

we have had a crazy few weeks. Kahlil came home with us, then my parents and Sterling came for a few days.. We had a great time, but now our house seems so quiet.

So, earlier this week we took J back to KKI for a swallow study and oral motor evaluation. We did learn that he has been aspirating when he is drinking water or juice. They took some chest x-rays to confirm, but believe that his random high high fevers are caused by this fluid in his lungs.

So on that front, for the time being, he may only have thickened liquids through a valved sippy cup.

The oral motor eval showed significant issues with his skills, including weakness, underdevelopment, and sensitivities. She gave us a home program to work with to see if we can strengthen his jaw...

through all of this the formal recommendation is that he be placed in the inpatient feeding disorders program for 8 weeks.... I am not really going for it. The behaviorists want to ignore what I believe to be underlying medical issues. They think that aside from the things stated above that it is all behavioral, and I disagree. We did go tour the program, and it broke my heart, and convinced both DH and I that Jonas would not be going there.

I contacted the Dr in NYC to set up an appt. She only accepts certain patients (seeing as she is well sought after for her specialty in the filed of growth failure), and the nurses screen patients before setting an appt. Since I have already been communicating with her via Email, she has already agreed to see him, but I still have to wait for the paperwork to go through her.

I have my fingers crossed. :)