Lots to update

So, a lot has gone on since my last blog. Monday we took Autumn to her first appointment at Scottish Rite. They have a spina bifida clinic there and all the care is free. YEA! Anyways, they took a very detailed of our family history--even wanted to know about our siblings, nieces, and nephews. They also adviced us to tell ALL of our family members to take their vitamins and for the women to take folic acid since that is one cause of spina bifida so here is your warning. :) So, then a nurse came in to talk to us about all of Autumn's issues and our concerns. They did mention that the reason she may be needing more oxygen is because her shunt may be malfunctioning and we have also noticed a new soft spot on the back of her head so that could be from extra fluid on her ventricles. So, we have an appointment with Children's to get her a CT scan on Friday to see how everything looks. Let's pray everything is fine so that we will not have to have a shunt revision surgery because that will put on coming home even later. We also have another appointment at Scottish Rite on Tuesday to meet with a urologist to check her bladder and see about getting her on a bowel program that will regulate her to only have a bowel movement 1-3 times a day so that she will not keep having rashes from her acidic bowels (we are fighting another rash again). This is a typical issue with spina bifida patients. So, we will be following up with Scottish Rite for all of her spina bifida issues, Children's with neurology issues, and Baylor's Children's House for vent clinics. So, we will be in Dallas quite often so that is why we are still thinking about moving there. We'll see though. By the way, I am frustrated with Children's because they called to verify insurance info but have NONE of Autumn's information in their system other than she is a boy. Hmmmm......they have no record showing we were there for 11 weeks?--so we will have to get all of that figured out on Friday when we go to our appointment.

So, I called and talked to our nursing company today. They have all but 1 part time nurse hired and they were going to interview one today. So, she said we will have 5-6 nurses coming in and one will be our primary nurse during the day to help with dr. appointments and ordering supplies, etc. I went by to meet the lady in charge today but she was at lunch so I will try to catch her Thursday before I have to leave Midland on Friday. She was telling me how she had prayed about taking on Autumn's case and that she knew they did not have the staff but trusted God to provide and the next day she said applications came in. So, we definitely see God's hands completely in control of it all. We will start with 24 hours for 2 weeks then go to 20 hours for 2 weeks and then 16 hours after that--I will then be able to see if I want to stick with the 16 hours or go down to 12 but that is a ways away to think about now. I also talked to the DME company and they have gotten the list of supplies needed and will be ordering them and getting us our equipment soon.

James had a meeting today with our care team at Baylor and we have 2 dismissal dates. Our first goal is to leave Baylor on the 15th but they are not sure if they can get everything ready by then and if not then our next date is the 20th which is 2 weeks from today. This also may change depending on the CT scan results so keep praying. They are also trying to get us to leave from Baylor to go straight to a nursing home to get on the CCP program for Medicaid and then straight to home from there. We are not sure yet if we will be using a nursing home in Dallas or Midland and how long we will actually have to stay there. Once the CCP kicks in then Autumn will be covered for life. Autumn will also get connected with ECI to do her physical, occupational, and speech therapy at home once we get her here. Until we leave the hospital we may also try to get Autumn on just 6 bottles a day so that she will not have to wake to be fed in the middle of the night. Not too big of a deal since I will have nurses to feed her anyways but if one does not show that would be a plus. HA! We are also going to see about trying a new thing where you hook a bag to her G-button and it vents the air out of her tummy while she bottle feeds so we will not have to give her gas medicine anymore. Once we get use to one thing though we are changing and learning a new thing. :) I guess we need to get use to that.

So, I have TONS to get done until I leave again on Friday and I hope this will be my last trip home without Autumn. Keep those prayers coming because I can see that light shining much brighter at the end of the tunnel.

Oh, I forgot to mention that I took time today to go visit my cat at the animal shelter. She looks great. They shaved her hair so she has a lion cut (she had some mats). She remembered me and I cried and cried when I saw her and loved on her. I can see though she is happy and being taken care of. I wanted so bad to take her home but I know I can't but it was so sweet to be able to see her again and see she is in great hands. I still have not heard an update on my bullmastiff but my pomeranian went to James' grandmother and is being spoiled.