J Monster's stats:
weight: 20lbs 4 oz (84%)
height: 24 1/4 in (68%)
head: 17 1/4in (42%)
CC Bear's:
weight: 19lbs 4oz (92%)
height: 26.5in (66%)
head: 17in (64%)
Thankfully it looks that C's weight is leveling out now that the steroids are officially out of her system...she has only gained a pound in the last month! Jackson was pretty much a rock star with his shots and certainly handled them well. Charlie Claire has gotten a hall pass on shots at her 4 month and 6 month check up because of her high dose steroid and then because of the surgery so we need to get her caught up now that surgery is behind us.
Ok, moving on to post op news...
We met with Dr. Tye (surgeon) first and he was amazed at how well C looked! He couldn't have been more pleased with how alert and bright eyed she was during our visit with him. Dr. Tye said that her incision looked really good and is healing very nicely. He showed us on C's MRI the area that was removed - it is about 3/4 of the left side of her brain. We will see him again in a couple months when we go back up to see the neuro.
After we finished up with Dr. Tye we headed across the street to meet with Dr. Morton and his team. We had a lot more questions for the neuro team and were super anxious for this appointment. Earlier in the week I thought C Bear was having some seizures. I took a couple videos of what C was doing and sent them over for Dr. Morton to look at. I may have overreacted a tad...when I actually sat back and thought it through I was able to be more rational and realize that she wasn't having seizures. Dr. Morton confirmed that today...the things that Charlie Claire is doing are not seizures. To calm some of anxiety about watching every move the poor girl makes, Dr. Morton did explain what he thought she would do if she were to have a seizure and things for us to look for.
We had questions in regards to Charlie Claire's development and long term prognosis. As far as development, CC is around a 2-3 month old and we need to work with her on that level. Since we have another baby the same age in the house it is hard sometimes to not expect C to do what Jackson is doing even though the rational part of us knows that Jackson wasn't constantly seizing all day every day for 4+ months, he isn't on 3 different seizure meds and he didn't have massive surgery to remove part of his brain. They do believe that C will be able to catch up but it will take some time. It was very reassuring to hear that the team is pleased with how C is doing right now and how hopeful they are that she will make up for lost time.
Long term prognosis: Considering the fact that C is missing 3/4 of the left side of her brain she is going to have some type of deficit, no one knows for sure (aside from the vision) exactly what that will mean down the line...only time will tell. The plus of her having the surgery at the age she did is that other parts of her brain can compensate for what she is now missing, no one has a way of knowing at this time how her brain will "re-organize" itself. The goal all along has been to have CC in a mainstream school, doing mainstream things and the neuro team is still hoping that goal can be achieved. Dr. Morton feels that once C "figures out" how to use the vision she has some of her development stuff will follow closely behind. This makes us even more eager for CC's functional vision assessment in a couple of weeks so we can provide her with tools to help adapt to her vision loss.
We cut her Sabril again today!! The taper process is not for seizure control but to prevent withdrawal. C's dose went from 8.5mL twice a day to 4.25mL twice a day. We will do this for two weeks and then NO MORE SABRIL!!!!!! You have no idea what a relief it will be to get C off this medication for good! Once she is off the Sabril we will work on tapering her Klonopin. The phenobarb will be the last thing to taper - most likely she will be tapered off the phenobarb but something else will take its place. We will go back to meet with the team in June and at that time C will have an EEG to check on everything.
The appointment came at a perfect time and we are so thankful that the neuro team took so much time answering our questions/concerns and reassuring us that things are on the "right track" for Charlie Claire. We have said this before but feel the need to say again how pleased we have been with MCV...we have the utmost respect for Charlie Claire's team and truly feel that they have her best interest at heart.
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| J Monster ready for the road trip! |
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| Super pleased with herself for getting a good report! |
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