Twas the night before a big road trip and all’s going well,
Sarai is excited to welcome back her stem cells!
Ok, I get no points there for rhythm, but it almost rhymes!
What a busy, bustling week we’ve had here! Sarai got 3 shots, including one called Synagis (for high risk babies to prevent RSV, a respiratory virus). The Synagis is nasty, the others she was fine with. But having the shots really put her out for a couple days. Poor Coleen and Bob had us over for dinner, and Sarai was not on her best “dinner-party” behavior. But she got weighed (at the doctor, not at Coleen and Bob’s!) and is up to 10 lbs 5 oz! Whew-ee!
Therapies have been going really well. And Sarai had appointments with the neurologist and developmental pediatrician this week too, both doctors she hasn’t seen since September. I was so excited to show off her smiles, coos and how much more loose her muscles have become. The developmental pediatrician is glad with how she’s growing and has progressed so far, but her not focusing on objects or tracking very well is a great concern. The neurologist referred her for vision therapy through early intervention, and the developmental pediatrician referred her to a neurological opthamologist. So we’ll be following up with all this after our trip to Duke.
Also, we mentioned to the neurologist that she’s fussy. This conversation went from 0-100 fast….
Me: She’s fussy. She doesn’t like to be put down, but she usually calms easily.
Dr: Is she fussy around the same time each day?
Me: No, not really.
Dr: Do you think it’s colic?
Me: I don’t think so, I think she’s just fussy. She’s getting better and better though.
Dr: Have you noticed any eye rolling or twitching?Me: No.
Dr: Well, even if you don’t see it, she could be having slight seizures that you wouldn’t pick up on.
What?? Really?? Or, she could just be fussy, right?? He wants her to have another EEG (she had one in the hospital that was normal) to check for seizures. I’ll keep you posted.
So, our second big trip to Duke is TOMORROW! I can’t believe how fast the time has gone! We’re almost all packed. We’re heading out in the morning, driving this time, to spend the night with my cousin Amy and her husband Kevin in VA. Then we’ll go to Cindy and Justin’s from there on Sunday morning. It will be a perfect way to break up the trip. I have no idea how Sarai will be in the car, but she usually just passes right out… I’m banking on that. We have appointments all week until Thursday in NC. The infusion is Tuesday, MRI is Wednesday, and we meet with Dr. Escolar on Thursday morning. She’s the doctor who was an amazing wealth of knowledge on our last visit. I can’t wait to see these guys!
I know you will, but wish us luck!! I’ll try to update the blog while we’re gone. Love you all!
Sarai is excited to welcome back her stem cells!
Ok, I get no points there for rhythm, but it almost rhymes!
What a busy, bustling week we’ve had here! Sarai got 3 shots, including one called Synagis (for high risk babies to prevent RSV, a respiratory virus). The Synagis is nasty, the others she was fine with. But having the shots really put her out for a couple days. Poor Coleen and Bob had us over for dinner, and Sarai was not on her best “dinner-party” behavior. But she got weighed (at the doctor, not at Coleen and Bob’s!) and is up to 10 lbs 5 oz! Whew-ee!
Therapies have been going really well. And Sarai had appointments with the neurologist and developmental pediatrician this week too, both doctors she hasn’t seen since September. I was so excited to show off her smiles, coos and how much more loose her muscles have become. The developmental pediatrician is glad with how she’s growing and has progressed so far, but her not focusing on objects or tracking very well is a great concern. The neurologist referred her for vision therapy through early intervention, and the developmental pediatrician referred her to a neurological opthamologist. So we’ll be following up with all this after our trip to Duke.
Also, we mentioned to the neurologist that she’s fussy. This conversation went from 0-100 fast….
Me: She’s fussy. She doesn’t like to be put down, but she usually calms easily.
Dr: Is she fussy around the same time each day?
Me: No, not really.
Dr: Do you think it’s colic?
Me: I don’t think so, I think she’s just fussy. She’s getting better and better though.
Dr: Have you noticed any eye rolling or twitching?Me: No.
Dr: Well, even if you don’t see it, she could be having slight seizures that you wouldn’t pick up on.
What?? Really?? Or, she could just be fussy, right?? He wants her to have another EEG (she had one in the hospital that was normal) to check for seizures. I’ll keep you posted.
So, our second big trip to Duke is TOMORROW! I can’t believe how fast the time has gone! We’re almost all packed. We’re heading out in the morning, driving this time, to spend the night with my cousin Amy and her husband Kevin in VA. Then we’ll go to Cindy and Justin’s from there on Sunday morning. It will be a perfect way to break up the trip. I have no idea how Sarai will be in the car, but she usually just passes right out… I’m banking on that. We have appointments all week until Thursday in NC. The infusion is Tuesday, MRI is Wednesday, and we meet with Dr. Escolar on Thursday morning. She’s the doctor who was an amazing wealth of knowledge on our last visit. I can’t wait to see these guys!
I know you will, but wish us luck!! I’ll try to update the blog while we’re gone. Love you all!
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