I did end up calling that nurse care manager and am feeling better for having done so. We hashed out details of Connor's care. She spoke with Connor's dietitian (who knew he had one?) and she gave us a formula for a 26 calorie formula and 900ml a day (30 ounces or 36 ounces, thickened by bottle). Thickener that we use expands the formula. Also, she tried to get Connor a local vision test sooner but the doctor is popular here and booked until January so we'll stick with our November appointment at Primary's.....I discussed quite a bit with Cathi, our nurse care manager. She will start being someone I speak with weekly to help iron out any details of the week or any new questions we may have. She was awesome. I called in the morning, we spoke for about 30 minutes on various questions, insurance needs, calorie needs, the future, etc. She called that same day and answered each question I had, got us extra formula to be sent to the house and is working on getting us approved for a better thickening agent that doesn't expand so much and is covered by insurance...she's working on making us a definite feeding plan (but has to wait for information from today's visits) and did a little mama-mental therapy from someone who's already been through everything we're dealing with. Very nice.
Today, early intervention will have various people meeting at our house to discuss a plan on physical therapy, cognitive therapy and hearing/speech therapies. Connor then has an appointment at Primary's for another swallow study. We're a little worried about aspiration but sure hoping we're done with this particular worry. So much is riding on this swallow study. It could really change up his diet but with that, it may introduce more reflux issues. ....I'm also a bit worried because since introducing a little bit less of a thick formula (from honey/pudding thick to nectar thick), Connor has developed what we hope is just a cold. He's had quite a bit of mucus and formula draining from his nose and has developed a cough that we hear more than anything, when he's lying down. This could be signs of aspiration but...it could just be a cold. We should know that answer today.
Tomorrow, Connor has speech therapy and then a visit with the pediatrician. I sure hope he's gained weight this week. Once again, he looks bigger to me. He is truly filling out his 3 to 6 month clothes and is looking less drowned out in the 6 to 9 month outfits. As always, his eyes look so clear and he seems mostly happy.
I wanted to touch base that I did in fact go to church for the first time in 3 years this past Sunday. Right now, it's a majorly sensitive subject that I may want to expand on tomorrow but not today. I thought I was over some issues but I am not. ......and no worries over my soul. I never felt God left me or that Christ was out of the picture completely....I just have unresolved issues and I happen to believe I am known more completely by God than anyone, so I'm going to be fine. In believing this way, I also think my loved ones are all covered by God too. To me, each and every person in this world has their own story and God knows it completely. For that reason, I know in my heart not to preach to others....I add this only because recent events in my home had me ready to ban people out of my life.....I am a great believer in leading by example and trying really hard to keep your mouth shut unless it's kindness or simply a provoking thought planted for a positive outcome. I screw this theory myself constantly but I try. Others in this world believe their way is the only way....hogwash!, don't try to do God's job. As I understand him/her, he/she's quite good at knowing us and I find alot of comfort in that. .....so, no preaching to me or my family. Prayers are great. Kind thoughts are wonderful. Telling me or my loved ones how to conduct our lives in any way, not so good....please find your nearest exit.
..........anywho, I've had a wonderful week so far. I have great hopes for the next two days and am expecting a fun weekend. The hubby is off to Moab with some great friends and good times. Well deserved time for him and I hope he has a blast. I have a friend or two coming by to visit me (and if you want to visit just let me know!) and I am plan on getting out and visiting a friend myself. ......I had a few precious hours to myself yesterday and feel recharged. ..........and Tristan has his very first interview today!!!! He needs and wants a job so I sure wish him luck!!!! (I think Tristan is a bit like me in that he's going to thrive on a full schedule....he's a smart cookie and hopefully will nail the interview.)