Sunday, October 21, 2018
EEG Day 2
Another day trying to keep Morgan occupied and entertained. They monitored overnight again on Friday and we were discharged Saturday morning around 10 am. The neurologist went through the last 24 hrs of results again and just a couple of spikes but nothing concerning as was the day before. He prescribed Diazepam to have handy just in case she ever did experience a seizure and it lasted longer than 3 mins. So grateful for uneventful stay and that we do not have another diagnosis at this point!
Friday, October 19, 2018
Admitted EEG Day 1
We checked into Children's about 9am yesterday. It took a while to get situated but we are told we have the biggest/best room on the floor with a good view of the garden :).
She was not a fan of the blower which dries the glue for the electrodes to stick to her head (she freaked out and pulled several off on more than one occasion) so that was a fun couple hours just trying to get set up. The goal is just to monitor her with regular activity and they have this feeding to the front desk with video monitor on her also. We spent the rest of the day yesterday just hanging out- tv shows, movies, play doh, arts & crafts etc. At least had a decent night sleep since they are not coming in every couple of hours overnight like past hospital visits!
The Neurologist rounded this morning around 10 am and gave an update that her brain activity is looking fine. They are not seeing spikes in her parietal lobe, the "abnormal brain activity", that they have seen on the last two EEGs. So this is good and hopefully means her brain has "calmed down" over the last couple months which I think her behavior and lack of "episodes" shows. The problem with seizures, however, is you never know when they may hit so he was concerned they will likely crop up again and suggested prescribing an "emergency medicine" to have handy at home just in case. He described this like an electrical line in a house, the spikes are like the line "sparking" and you never know when or if it could start a fire (seizure). Meanwhile they would like to keep her one more night/day just to continue to monitor. Will discuss more tomorrow morning after more results.
She was getting very stir crazy this afternoon and wasn't allowed to leave the room, the monitor is plugged into the wall with a long cord so she could only walk around in the room :(. Thankfully Breannas Gift org/volunteers (breannasgift.org) came by with a fun mask craft and we were able to get the cord out to the hallway tables so she had fun doing that. A couple of hours ago they came through with a battery pack so she got about an hour in the kids play room also and doing much better now!
Updated pic from today
She was not a fan of the blower which dries the glue for the electrodes to stick to her head (she freaked out and pulled several off on more than one occasion) so that was a fun couple hours just trying to get set up. The goal is just to monitor her with regular activity and they have this feeding to the front desk with video monitor on her also. We spent the rest of the day yesterday just hanging out- tv shows, movies, play doh, arts & crafts etc. At least had a decent night sleep since they are not coming in every couple of hours overnight like past hospital visits!
The Neurologist rounded this morning around 10 am and gave an update that her brain activity is looking fine. They are not seeing spikes in her parietal lobe, the "abnormal brain activity", that they have seen on the last two EEGs. So this is good and hopefully means her brain has "calmed down" over the last couple months which I think her behavior and lack of "episodes" shows. The problem with seizures, however, is you never know when they may hit so he was concerned they will likely crop up again and suggested prescribing an "emergency medicine" to have handy at home just in case. He described this like an electrical line in a house, the spikes are like the line "sparking" and you never know when or if it could start a fire (seizure). Meanwhile they would like to keep her one more night/day just to continue to monitor. Will discuss more tomorrow morning after more results.
She was getting very stir crazy this afternoon and wasn't allowed to leave the room, the monitor is plugged into the wall with a long cord so she could only walk around in the room :(. Thankfully Breannas Gift org/volunteers (breannasgift.org) came by with a fun mask craft and we were able to get the cord out to the hallway tables so she had fun doing that. A couple of hours ago they came through with a battery pack so she got about an hour in the kids play room also and doing much better now!
Updated pic from today
Monday, October 1, 2018
Kindergarten & Serial Casting
Three and a half weeks in to Kindergarten and one week with her cast on...thought I would jot down some updates on Morgan!
Kindergarten (all day Spanish Immersion in PL) was a bit of a struggle the first few weeks but getting there! I have received a phone call or email from the school every day except 2 at this point - various things regarding her orthotics, glasses, long walk & stairs are a problem when going from classroom over to Westwood school next door for gym/art/music (construction in progress), she had a meltdown after getting wet one day, new para wasn't hired, she fell, etc. etc. Hopefully they are just being overly cautious as they get to know her and I think still ramping up their Special Ed at this school. The good news is I think Morgan really enjoys it and seems so grown up with her stories after school :) and I love that she gets transportation straight home (when I am not traveling) so I get to be first to hear about her day.
Last Monday, we went into Gillette's for her Serial Casting. They casted her right leg only and of course she picked a pink cast. They were able to get her ankle to near 90 degree in the cast. She will have this one on for two weeks and next Monday we will go back in to remove and put a new one on with even greater flexion for another two weeks. She does still toe walk in her cast somehow but they said this is pretty normal and the next cast will be much harder for her to toe walk in. We scheduled a follow up with physical therapist and will likely have to have her orthotics redone after the casting also. Morgan actually doesn't seem to mind it- I thought it wouldn't be so cool after a couple of days but I think she gets a kick out of the attention and everyone commenting on her broken leg! Baths are a challenge but turns out they make rubber cast covers and sell them on Amazon, I highly recommend!
Kindergarten (all day Spanish Immersion in PL) was a bit of a struggle the first few weeks but getting there! I have received a phone call or email from the school every day except 2 at this point - various things regarding her orthotics, glasses, long walk & stairs are a problem when going from classroom over to Westwood school next door for gym/art/music (construction in progress), she had a meltdown after getting wet one day, new para wasn't hired, she fell, etc. etc. Hopefully they are just being overly cautious as they get to know her and I think still ramping up their Special Ed at this school. The good news is I think Morgan really enjoys it and seems so grown up with her stories after school :) and I love that she gets transportation straight home (when I am not traveling) so I get to be first to hear about her day.
Last Monday, we went into Gillette's for her Serial Casting. They casted her right leg only and of course she picked a pink cast. They were able to get her ankle to near 90 degree in the cast. She will have this one on for two weeks and next Monday we will go back in to remove and put a new one on with even greater flexion for another two weeks. She does still toe walk in her cast somehow but they said this is pretty normal and the next cast will be much harder for her to toe walk in. We scheduled a follow up with physical therapist and will likely have to have her orthotics redone after the casting also. Morgan actually doesn't seem to mind it- I thought it wouldn't be so cool after a couple of days but I think she gets a kick out of the attention and everyone commenting on her broken leg! Baths are a challenge but turns out they make rubber cast covers and sell them on Amazon, I highly recommend!
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