The Week in Review
Mother's Day:
Spoiled rotten with a new camera that I have yet to learn how to download photos to my computer. But I LOVE IT!
My sweet hubby made eggs benedict for lunch, and filet mignon for dinner.
My sons and daughter in law gave me precious cards that I love so much I want to buried with them. And I may frame them.
THAT good.
The week in review:
Gianna had an oh-so-important meeting with A LOCAL Doctor for surgeries! Did I mention that HE IS LOCAL?!? And the bottom line after a ton of information is, THAT WE LOVE HIM!! We love him SO MUCH, that we actually have booked her next surgery already. November 8th. It wasn't booked for me with no chance to change it. We can easily work our life around that date, OR, change it if we need to. We have never had that option at Shriners. And because he is LOCAL, if Gianna should have a problem, or we need clarification, or we just want to schedule an office visit to discuss things, we don't have to wait 6 months and try to squeeze 30 more seconds of fired off questions in the pre-op area with the Dr who is rushing you back to surgery.
I like it.
We had other various Dr appointments that were no where near as exciting so I will refrain from boring you further with the "On-going Saga of Doctors, and the Patients that See Them Weekly."
You're welcome.
Moving right along.....
My friend, (who had not met the twins until this week) was at GoodWill and noticed a chair like contraption and thought of Celia. She texted me a picture, and let me tell you, this thing ROCKS.
It is a wooden (and much sturdier version) of her Special Tomato Chair in the picture above. It's on wheels with a stroller handle and it will give her years to grow. The wonderful thing is, that as she gets heavier, it will be harder and harder to carry her. With this chair, we have a solution upstairs to get her out of bed and right into her chair, and then we can push her around to the rooms we are in upstairs. When we are downstairs, we have the same option. What an overwhelming blessing!!
Lastly, sniff...... As many of you know, "Our Maggie" had come to live with us for the summer. What Greg and I did not think through was, that we are a lysol spraying, chlorox bleaching, germaphobe home that has be to VIGILANT for killing germs so that both Celia and Gianna stay respiratory-healthy.
Poor Maggie got sick for two full weeks out of the four she has lived with us, which unfortunately means that she had to stay sequestered in her apartment the entire time. Even with those measures, a few days after each of her illnesses, some of us got sick. Germs find us.
Sweet Maggie was so thoughtful to offer to live with another family that she is also close with. I think it will be a much better arrangement for her, where she can have a cold and isn't greeted with hazmat suits and gas masks.
Kidding.
(Sortof.)
We will miss you Mags!
Next up:
Celia meets a new neurologist next week who hopefully can tell us if she is having clonic seizures with all her constant movement. We never heard back from Dr. S (her "world renown geneticist" who told us NOT to have a neurologist right now, and that they would oversee her medical issues.) I forward the video to give him examples, got an email stating that they would contact our Ped and begin some meds that our Ped could monitor her. Yeah..... nothing. No call to the Ped, no follow-up with us.
S-I-L-E-N-C-E.
(And it ain't so golden, lemme tell you.)
I don't care how amazing you think you are in the medical field, if you cannot have the courtesy to call a patient and follow through ESPECIALLY when you told them not to have a neurologist AND they are having problems, then you aren't so great.
And when you aren't so great, you're fired.
You don't want me to go "ALL MAMA BEAR" on you, so let's just say that we have parted ways and leave it at that.
Celia will be meeting a new geneticist in August. Dr. K actually trained Dr. S. and her staff was appalled that Celia has no neurologist and promptly referred us to one.
And, if I get wild and crazy with all my free time, I might learn to download those pictures from my awesome new camera so you can see less-blurry photos of my cuties.
But I wouldn't hold your breath or anything.
Spoiled rotten with a new camera that I have yet to learn how to download photos to my computer. But I LOVE IT!
My sweet hubby made eggs benedict for lunch, and filet mignon for dinner.
My sons and daughter in law gave me precious cards that I love so much I want to buried with them. And I may frame them.
THAT good.
The week in review:
Gianna had an oh-so-important meeting with A LOCAL Doctor for surgeries! Did I mention that HE IS LOCAL?!? And the bottom line after a ton of information is, THAT WE LOVE HIM!! We love him SO MUCH, that we actually have booked her next surgery already. November 8th. It wasn't booked for me with no chance to change it. We can easily work our life around that date, OR, change it if we need to. We have never had that option at Shriners. And because he is LOCAL, if Gianna should have a problem, or we need clarification, or we just want to schedule an office visit to discuss things, we don't have to wait 6 months and try to squeeze 30 more seconds of fired off questions in the pre-op area with the Dr who is rushing you back to surgery.
I like it.
We had other various Dr appointments that were no where near as exciting so I will refrain from boring you further with the "On-going Saga of Doctors, and the Patients that See Them Weekly."
You're welcome.
Moving right along.....
My friend, (who had not met the twins until this week) was at GoodWill and noticed a chair like contraption and thought of Celia. She texted me a picture, and let me tell you, this thing ROCKS.
Lastly, sniff...... As many of you know, "Our Maggie" had come to live with us for the summer. What Greg and I did not think through was, that we are a lysol spraying, chlorox bleaching, germaphobe home that has be to VIGILANT for killing germs so that both Celia and Gianna stay respiratory-healthy.
Poor Maggie got sick for two full weeks out of the four she has lived with us, which unfortunately means that she had to stay sequestered in her apartment the entire time. Even with those measures, a few days after each of her illnesses, some of us got sick. Germs find us.
Sweet Maggie was so thoughtful to offer to live with another family that she is also close with. I think it will be a much better arrangement for her, where she can have a cold and isn't greeted with hazmat suits and gas masks.
Kidding.
(Sortof.)
We will miss you Mags!
Next up:
Celia meets a new neurologist next week who hopefully can tell us if she is having clonic seizures with all her constant movement. We never heard back from Dr. S (her "world renown geneticist" who told us NOT to have a neurologist right now, and that they would oversee her medical issues.) I forward the video to give him examples, got an email stating that they would contact our Ped and begin some meds that our Ped could monitor her. Yeah..... nothing. No call to the Ped, no follow-up with us.
S-I-L-E-N-C-E.
(And it ain't so golden, lemme tell you.)
I don't care how amazing you think you are in the medical field, if you cannot have the courtesy to call a patient and follow through ESPECIALLY when you told them not to have a neurologist AND they are having problems, then you aren't so great.
And when you aren't so great, you're fired.
You don't want me to go "ALL MAMA BEAR" on you, so let's just say that we have parted ways and leave it at that.
Celia will be meeting a new geneticist in August. Dr. K actually trained Dr. S. and her staff was appalled that Celia has no neurologist and promptly referred us to one.
And, if I get wild and crazy with all my free time, I might learn to download those pictures from my awesome new camera so you can see less-blurry photos of my cuties.
But I wouldn't hold your breath or anything.
Up to my ears in life over here, but wanted to say I love you and am always thinking of you. And am going to be sending you a box. My goal is to send it this week. That's the goal, anyway.
ReplyDeleteHappy mothers day to a wonderful mom. Sorry things didn't work out with Mags, glad that you found someone that you feel more comfortable regarding Celia's care.
ReplyDeleteSounds like the local option for Gianna is definitely the way to go. So happy it will make the logistics so much easier to manage. We have Nov. 8 on the calendar and will be praying for the new doctor right up to that date. Can't wait to gear results of Celia's date with the neurologist. We are praying for this development, as well. Don't worry about fuzzy; we are just anxious to see more pictures. Love you!
ReplyDelete