Thanks for all the supportive comments and encouragement on my last few posts. I know that life will one day get easier, but right now it just feels relentless right now. And as I mentioned in the comments, I have an appointment with my doctor next week to discuss options for dealing with my anxiety. Deep breaths…
And speaking of breathing- I got a call this morning from Grayson’s pulmonologist’s nurse with his sleep study results. This was the start of the conversation:
Nurse: Good news, Grayson has improved since his last sleep study
Me: (skeptical) Really? Wow- that’s great!
Nurse: Yes, Dr. J would like to keep his oxygen order the same.
Me: Ummm…he’s not on oxygen
Nurse: Oh. (silence). Really?
SO (and let’s not even delve into why they thought G is already on oxygen) apparently Grayson needs supplemental oxygen, probably only at night. His doctor is out of town, so they are supposed to get back to me next week with the plan.
After having a mini panic attack after getting on the phone, I reached out to my Mito Mom friends whose kids are on oxygen, and they have assured me it’s no big deal. And I know they’re right- we eventually got to the point where the feeding tube is no big deal, and it will be the same with this. It’s just at first, when you add something new, it’s scary and overwhelming. And if the oxygen will make a positive difference in his sleep and energy, it’s what we need to do.
And also speaking of oxygen and breathing, I wanted to share this blog post/website I came across last week.
Regardless of your position on this particular issue, I think the lesson of this family’s story can be applied to a lot of circumstances. When we try to change/don’t accept a part of our children’s life, it will have a profound impact on how they love themselves. I want my children to know that I love them “just because they breathe”. I want them to be able to be who they are, to make mistakes, and to not be perfect- and know that I love them just the same.
And I am REALLY feelin’ the love for this little girl right now- not only did she only wake up once last night, after we went on a walk, she nursed, then drank almost a full bottle, and has been sound asleep in her crib for almost an hour now. Hooray!