Reluctant...

It's been a week since I have written here... I think for one, I have more on my plate than I know how to manage right now... but also, I'm just reluctant to share. I don't think it's because of any specific reason except for... I don't know how to swallow life right now so it's hard to put it in writing extensively.

There is still this part of me that hopes I will wake up tomorrow and realize this isn't life but instead, it simply me living out a bad dream. But, that bad dream is here and not so easy to take right now... so push forward. One DAY at a time. Some times second by second.

Jeff had his testing done Tuesday. Started with a NCS followed by an EMG (first is nerve conduction, second is muscle). This wasn't the most pleasant test, but he survived. The doctor told him he was a super good patient! He had an MRI of his head done, also an EEG (looking for seizures) and finally, blood work. He was pretty wiped out to say the least.

We came straight onto Cincinnati from there. I'm struggling with being exhausted just because of doing all the driving and care, etc., so staying the night Tuesday and Wednesday was our only option with all the running we've been doing.

Sis had a pulmonary appointment today. We have been concerned in seeing a lot of shortness of breath in her. The Doctor spent a lot of time listening, asking questions, etc. The final point of the exam came down to the fact that Abby's shortness of breath is not related to her asthma as we had been lead to believe, but instead, it is an issue of muscle weakness. This was truly disappointing to hear! They are moving forward with a sleep study. She has a history of hypo ventilation. This is something that happens when you can't make the exchange of air and clear out all the stuff when you exhale. She wants to ensure this hasn't worsen as this is also because of weak muscles. She isn't changing the asthma meds until after the study. She did, however increase her allergy med to make sure that is covering our base line. And, is starting Abby on cortisone to treat her eczema.

I spoke with the surgeon today through the dentist office. They are backed up on surgeries. Joey was not specified as an emergency case, so they are putting him on the waiting list. Probably be after the first of the year before anything is done there. OK by me! The longer the better since he had surgery in September.

Tomorrow, we go to see an Occupational therapist at Cincinnati. She is going to be working individually with the kids. This will allow her time to see what they are capable of and what they are lagging behind in. One thing she will be working towards and looking at is to make sure we don't need any adaptive equipment right now. The Physical therapist who worked with us on the wheel chairs really thought this exam would be beneficial. So, we are walking it out.

I'm sorry if this is all overwhelming. This is why I don't want to blog or update in detail. I find it over whelming and seems there is something EVERY day right now. I do thank you for your prayers. Calls, emails and texts are meaning so much right now. I especially am a social person... so I feel like I'm in this lonely little box and those are areas that bless me and keep me moving forward! So, thank you to those who have been in touch!

Night all!