Catching Up

I took a little blogging hiatus last week, not for lack of things going on, but I just didn’t have the drive to sit down and write. We are doing fine-here’s what’s going on in our world.

  • We are taking our first summer “roadtrip” tomorrow for Grayson’s nursing home visit. If you remember, nothing about this process of qualifying for MDCP has gone smoothly, so why would I think this last part would either? I emailed our contact at the nursing home Friday afternoon to confirm and the email bounced back to me- twice. Hmm. So I called the nursing home and asked to speak to her. Guess what? She no longer works there. WHAT?! So I have no idea if our “reservation” is on the books or not. And of course I called at 5:00 on Friday and the administrator had gone home. So praying tomorrow morning when I call that everything is set. I’m ready to get this over with!

  • We saw the pulmonologist on Friday and got results of the sleep study. It was good news. Grayson did have 18 apnea episodes throughout the night, which seems high to me, but the doctor assured me they were minor and there is no need for interventions right now. Thank goodness. She did put him on a daily inhaler to improve his respiratory symptoms.

  • We got an email and later a phone call that our Mito specialist has been put on bedrest for her pregnancy and we won’t be able to see her for our appointment in July. We need to email her nurse to coordinate how we are going to get the results of Grayson’s MRI and spinal tap. I’m a little stressed about this.

  • This week, we have our nursing home visit, 2 doctors appointments (opthamologist and physical medicine), 3 therapies, 1 playdate, we are signing the paperwork for our will and trust we’ve set up for Grayson, and my sister comes home from college. We’ll be busy!
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5 thoughts on “Catching Up

  1. We see pulmonology tomorrow and our June appointment with the mito doc got canceled, too. Glad the sleep study results were pretty good, about the same as K's! Our concern with her is that her CO2 was borderline all night (and she had 20.9 arousals per hour, and 14 or less is normal), so we will probably be redoing it soonish to recheck that. Yuck! Hope everything with the nursing home visit works out!

  2. Oh my! When do you rest? Glad you have the inhaler, but the rest of it is pretty stinky. Hope they get it sorted at the nursing home, and that the specialist comes off bed rest… or at least has you see a partner or something… who will do his care while she's on maternity leave? Good luck with all of this!!!

  3. I hope last night went okay. I am hoping today you are feeling a major sense of relief having that out of the way and having a some of the financial burden lifted.

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