Well, friends... the sleep study ending up to be more of an adventure than bargained for... and not of Gracie's doing!
I was to meet them at the hospital since I was at a conference in Boston. So, I walked over to the hospital from Hynes Convention Center and arrived with plenty of time (5:30pm) ... to get phone calls from Josh... "I'm stuck in traffic (5:30pm)..." ... "I'm still stuck in Red Sox game traffic (6:00pm)..." ... "Okay, I got off 93 and I made it onto Storrow Drive..." ... "Umm... I don't really know where I'm going, I must have missed something... it looks like I'm headed out of Boston now (6:15pm) ..." ... "Someone ran me off the road and I blew a tire and bent the rim and I can't drive the car anymore... and I don't know where I am (6:30pm)..."
WHAT?! umm... (appointment is at 7:30pm)
So, I loaded myself back up with the breastpump (I had been out all day), my backpack with my laptop in it, and the now cold food that I had ordered for dinner in anticipation of a leasurely dinner as a family.
I wandered into the lobby of Children's and spoke to the front desk folks, explaining my crazy situation... "HI, ummm... my daughter has a sleep study tonight, but she's stuck across town somewhere with my husband in a car that is broken down... I'm not sure what to do? and he doesn't know where he is...?" They were so kind and eventually the social worker arranged for a taxi to take me to Josh and bring me and Gracie back.
The taxi came, looking for someone with a completely different name but the same account number, so we decided that he must be for me and off we went... like detectives, piecing together what little Josh could tell us in the darkness of Boston, not able to leave the car to explore his surroundings since he had both Ana and Gracie (who were, by now, starving little munchkins!) and no double stroller since that was in our van which broke down two weeks ago and has been awaiting a new transmission ever since. "I see some bright lights, like a soccer field... I see a square sign with the number 2 on it... I'm near the only place on the Charles River that rents boast..." oh boy! The Haitian taxi driver was greatly amused and enjoyed the challenge, I believe!
We actually found Josh and the car and the girls (7:30pm) and Josh had in the meantime gotten the (flat) spare tire on. He was able to aggressive follow the aggressive taxi back to Children's. I ran G up to the 9th floor to start her sleep study, completely frazzled, exhausted, and stressed.
It seemed not to matter that we were significantly late for the study as the kind people started hooking her up to all the equipment. Gracie was excited by the new environment and the attention... UNTIL it became evident that all 30+(?) electrodes had to be pasted onto her SCALP... she quickly figured out that this kind man was going to keep messing with her scalp and she became very unhappy. (as you know, her scalp is "no-touchy!!!!" realm.. she freaks out with any touch of her scalp, which is why I had to cut her hair. I was, however, grateful for short hair during this study!)
She was very patient, but by the end of 45 minutes of pasting, she was crying and even putting the electrodes onto her legs was a challenge. Not the easiest patient in the world!
By 9:30pm I left with Ana to SLOWLY head to NH driving our car with the doughnut tire on. By 11:00pm, I plunked the grouchy Ana into the crib to start her new training routine (in Gracie's room) and quickly fell to sleep only to get up the routine two more times with Ana during the night. Gracie slept very poorly and was awoken at 6:00am to take the electrodes back off, but she was so exhausted that they all came off with barely an opening of her eyes. I meant to get back down to Children's by 7:00am (to avoid traffic) but was too exhausted and ended up heading OUT at 7:00am (still on the doughnut tire) and reaching Children's by 8:30am (not bad!) with enough time to eat breakfast and get us to Gracie's appointment with the cerebral palsy clinic. While in the room waiting for the doctor, Josh spilled his tea all over the floor and Ana cut her fingers, adding blood to the floor, while Gracie snotted and drooled all over the place, hilariously rolling (and smearing) all over the casting table... oh my... the Rattins are in house! (I hope they decontaminated the room!)
(The sleep study results will take at least a week, apparently, so we'll let you know when we have some results!)
The CP clinic was with an orthopaedic surgeon who knows CP well. We were very pleased. We got xrays of hips and spine and she has mild scoliosis (from her tight hamstrings) (less than 10%) and her hips are partially out of socket (due to tight muscles), but so far, so good and he said that she looks good overall. She will likely be a candidate for botox injections of hamstrings, gastrocs, and adductors (all leg muscles). She also needs a night time brace for her right arm/hand and needs to wear her leg braces at night... so much for improving her sleep!!
we finally made it home, exhausted, but behind in our work, of course. We start the whole adventure again next week for her long term monitoring for video EEG (for seizures), hopefully with less car woes and a bit less exhaustion!
God is in charge and good!
I was to meet them at the hospital since I was at a conference in Boston. So, I walked over to the hospital from Hynes Convention Center and arrived with plenty of time (5:30pm) ... to get phone calls from Josh... "I'm stuck in traffic (5:30pm)..." ... "I'm still stuck in Red Sox game traffic (6:00pm)..." ... "Okay, I got off 93 and I made it onto Storrow Drive..." ... "Umm... I don't really know where I'm going, I must have missed something... it looks like I'm headed out of Boston now (6:15pm) ..." ... "Someone ran me off the road and I blew a tire and bent the rim and I can't drive the car anymore... and I don't know where I am (6:30pm)..."
WHAT?! umm... (appointment is at 7:30pm)
So, I loaded myself back up with the breastpump (I had been out all day), my backpack with my laptop in it, and the now cold food that I had ordered for dinner in anticipation of a leasurely dinner as a family.
I wandered into the lobby of Children's and spoke to the front desk folks, explaining my crazy situation... "HI, ummm... my daughter has a sleep study tonight, but she's stuck across town somewhere with my husband in a car that is broken down... I'm not sure what to do? and he doesn't know where he is...?" They were so kind and eventually the social worker arranged for a taxi to take me to Josh and bring me and Gracie back.
The taxi came, looking for someone with a completely different name but the same account number, so we decided that he must be for me and off we went... like detectives, piecing together what little Josh could tell us in the darkness of Boston, not able to leave the car to explore his surroundings since he had both Ana and Gracie (who were, by now, starving little munchkins!) and no double stroller since that was in our van which broke down two weeks ago and has been awaiting a new transmission ever since. "I see some bright lights, like a soccer field... I see a square sign with the number 2 on it... I'm near the only place on the Charles River that rents boast..." oh boy! The Haitian taxi driver was greatly amused and enjoyed the challenge, I believe!
We actually found Josh and the car and the girls (7:30pm) and Josh had in the meantime gotten the (flat) spare tire on. He was able to aggressive follow the aggressive taxi back to Children's. I ran G up to the 9th floor to start her sleep study, completely frazzled, exhausted, and stressed.
It seemed not to matter that we were significantly late for the study as the kind people started hooking her up to all the equipment. Gracie was excited by the new environment and the attention... UNTIL it became evident that all 30+(?) electrodes had to be pasted onto her SCALP... she quickly figured out that this kind man was going to keep messing with her scalp and she became very unhappy. (as you know, her scalp is "no-touchy!!!!" realm.. she freaks out with any touch of her scalp, which is why I had to cut her hair. I was, however, grateful for short hair during this study!)
She was very patient, but by the end of 45 minutes of pasting, she was crying and even putting the electrodes onto her legs was a challenge. Not the easiest patient in the world!
By 9:30pm I left with Ana to SLOWLY head to NH driving our car with the doughnut tire on. By 11:00pm, I plunked the grouchy Ana into the crib to start her new training routine (in Gracie's room) and quickly fell to sleep only to get up the routine two more times with Ana during the night. Gracie slept very poorly and was awoken at 6:00am to take the electrodes back off, but she was so exhausted that they all came off with barely an opening of her eyes. I meant to get back down to Children's by 7:00am (to avoid traffic) but was too exhausted and ended up heading OUT at 7:00am (still on the doughnut tire) and reaching Children's by 8:30am (not bad!) with enough time to eat breakfast and get us to Gracie's appointment with the cerebral palsy clinic. While in the room waiting for the doctor, Josh spilled his tea all over the floor and Ana cut her fingers, adding blood to the floor, while Gracie snotted and drooled all over the place, hilariously rolling (and smearing) all over the casting table... oh my... the Rattins are in house! (I hope they decontaminated the room!)
(The sleep study results will take at least a week, apparently, so we'll let you know when we have some results!)
The CP clinic was with an orthopaedic surgeon who knows CP well. We were very pleased. We got xrays of hips and spine and she has mild scoliosis (from her tight hamstrings) (less than 10%) and her hips are partially out of socket (due to tight muscles), but so far, so good and he said that she looks good overall. She will likely be a candidate for botox injections of hamstrings, gastrocs, and adductors (all leg muscles). She also needs a night time brace for her right arm/hand and needs to wear her leg braces at night... so much for improving her sleep!!
we finally made it home, exhausted, but behind in our work, of course. We start the whole adventure again next week for her long term monitoring for video EEG (for seizures), hopefully with less car woes and a bit less exhaustion!
God is in charge and good!
Comments