November 2008 Archives
Or as I'll always remember it, "Um, Mom, can you leave now?".
Sophie started her first day of Kindergarten here in Strathmore Park. She couldn't wait. She woke up at 5:30 asking if it was time to go. She was bouncing off the walls all morning.
We loaded Josie in the stroller and walked the three blocks to her new school. She made herself known to the teacher and then wandered around playing with things. Josie and I supervised and talked with one of the teachers. Then after about 15 minutes Sophie turned to me (of course with her teacher right there) and said, "Um, Mom, can you leave now?". It should make me sad but I laughed. What a great little girl. So independent and confident. I love her!
Several people have expressed interest in knowing what Josie's going through, so we wanted to share a video about a little boy Josie's age who has nearly the same symptoms she has (so far minus the tonic-clonic or grand mal seizures but we learned today that it wouldn't be uncommon for her to have them):
Brandie & I both found it to be a very powerful, moving and informative video. I also added a new section to the left-sidebar with links that have good information about the disease.
The doctor had us give her a full background as well as quizzed us about the seizures and family history. She educated us about epilepsy and let us know what our life would look like in the coming months. She gave Josie an additional medication which we will start tonight. We'll start lowering the dose of her current medicine and hopefully wean her off of it in the next two months or so. All of this depends on the new drug actually working but we are taking it one step at a time.
The neurologist is going to reread the EEG on Monday now that she has a better understanding of Josie and then get back to us hopefully Monday afternoon. Josie managed to have 4 seizures while we were in the office which was helpful to the doctors.
Jake and I left the office having every single question we could think of answered which was such a relief. It's good knowing what could be coming and how much time we have to give things. Thanks to everyone for your calls and emails of support. We are hopeful.
My girlie is a little ray of sunshine. Most of the news we've been posting here lately has been revolving around Josie's recent epilepsy diagnosis but I am reminded, all day, every day, of what a spunky, beautiful little, 2 1/2 year old girl she is.
Some things Josie loves:
Blowing bubbles - We have a great bubble gun that Josie has mastered. It makes HUGE bubbles and she is always so proud of herself after she produces a large bubble. It's all she can do to keep herself from popping it as she's blowing it.
Talking on mommy's cell phone - Thank goodness my phone has a key lock! She likes to hold my phone while we are in the car and the other day, I stopped at a light and noticed the people in the car next to us laughing and looking at our car. I turned around to see Josie with the phone pressed to hear ear "Calling Daddy". She is a child of technology.
Watching movies on Daddy's iPhone - While staying at the hospital earlier this week, she woke in the middle of the night and was disoriented. She called out "I want to watch Mickey on Daddy iPhone!"
Jumping on the trampoline - This trampoline has been a Godsend. It's spring free and is completely netted in. It's Josie's safe place to burn off some serious energy. She usually gets at least 30 minutes of trampoline time each day with her sister although some times she insists on jumping "by mine self".
Running! - It can't be avoided. We like to do it in the wide carpeted hallway or on the grass in our backyard.
Writing email - Another middle of the night hospital request she made was to "write an email to Grandpa Joe!". Usually we open a new email and enter in the To: field then just let her go crazy typing. She knows how to send them as well.
Dancing - As you may have seen earlier she is now taking a dance class with Sophie. Josie is very focused and loves taking direction. She seems to be a natural when it comes to twirls and pointy toes and smiley faces.
Reading travel books - Ok, maybe it's just because I have these laying around but she LOVES the New Zealand road atlas that's been around lately. She begged me to let her take it on the trampoline today.
Wrestling with her sister - The little sister is ruthless. She'll dig in and not even break a sweat. Sophie will be squirming and begging for mercy and Josie doesn't show any signs of giving in.
Giving big, slobbery kisses - She sure likes to pucker up. Bring a towel with you when she does though. Although, I have to admit, I've never turned a kiss from Josie down.
Josie had a technically successful EEG last night. She was wired from 4 pm till 10 am and had around 25 seizures during that time so that should give the neurologist plenty to work with. Having said that, the neurologist called saying that there was "a lot" of activity on the scan and she felt the best way to decipher it would be to come in and talk with her. We weren't actually expecting to get in (trust me, we were hoping) but she double booked us with a patient who has flaked in the past. So we are headed to see her on Friday (which is good because apparently she's the ONLY pediatric neurologist in the area AND she works part time AND she's taking the month of December off. Perfect storm?).
It's great that we got in but fairly frustrating as the EEG was set up with a video monitor and a seizure button which the tech told me to press anytime I saw Josie have a seizure. She said, even if it was a minute after the seizure (as you can imagine, I jump for the child, not the button, when seeing a seizure) that the mark on the scan would allow them to narrow in on the hours of information rather than taking longer to read it. Anyhow, the neurologist said "you're pressing the button and I don't know what for." Super. So she's increasing Josie's meds to the highest dose for her weight and we'll discuss the plan moving forward on Friday. Although the neuro has already put out the disclaimer that "she'll still have to go and think about it" after the appointment before doing anything. I think she'll go back and read the EEG. Ugh, ugh, ugh.
Also in our research, Jake's office has come in handy yet again. Turns out one of his coworkers mom works at a private hospital here in town and did some calling around for us to find out who the best to see is etc. It was reassuring (although frustrating) to hear we are seeing the right person and on the right track. We just want someone to fix it!
Josie was in good spirits, her usual boisterous self, eager to do anything to get a rise out of Sophie. She managed to score a private room with a restroom and foldout bed, so hopefully she and Brandie get some decent rest tonight (and we all get some good answers soon!) I'll put up another post as soon as we know more, thanks again to everyone for their support and well-wishes - we're thinking of you too.
Yesterday afternoon Sophie accompanied me on the pre-BBQ grocery run, and when we got home there were 5-6 girls ranging in age from 5-9 standing on their scooters in front of our house, talking. Sophie immediately wanted to join in the fun, so we unloaded the groceries with all due haste, got her helmet and elbow pads on and ran back out.
I hovered casually in the background as she scootered up to the gang and adopted the "talk" stance. I couldn't hear what words were exchanged but pretty soon they were engaged a game of scooter hide-and-seek on our cul-de-sac, with Sophie racing as fast as she could to keep up with the bigger girls. She wiped out once after going a little too fast, but thankfully her gear protected her from any serious scrapes or tears.
Before too long some other familiar-looking neighborhood kids had appeared on their scooters (it seems every kid has one here in Aotearoa), and we were invited over to our friends at twotriplekayaks' house to watch a show and visit. Brandie & Josie soon joined us, and we were all enjoying the sunshine in Mark & Tiffany's backyard. It was a very nice time in our little neighborhood.
Afterwards we had a Skype chat with Grandma & Grandpa, then Brandie went to hear our friend Nadine speak at church while I got to spend some quality time with the girls. We jumped on the trampoline, blew bubbles and played on the grass, then spread out a blanket and had our snack on the lawn. The girls kept playing together while I cleaned up, then came inside to watch a show while I made lunch. The girls are napping now while Brandie & I finish up some chores, then one of us (I've been nominated) is going to run out and get stuff for a bbq tonight.
Sorry it's not a terribly exciting post, but we've had all the excitement we can stand for a little while! We're trying to strike a balance between not boring Sophie to death and keeping things low-key for Josie. We've lost a little momentum with our hopes that things were returning to a normal state after learning it may take several months of trial-and-error with the various anticonvulsant drugs to get Josie's seizures under control (and depending on which kind of epilepsy it is, it may not be controllable by drugs.) We're not really looking forward to going back to the hospital tomorrow, but are hoping it's a relatively brief and painless visit that helps move things forward.
Happy Sunday everyone, I'm off to the store!
After a blissful couple of days with Josie down in the single digits of seizures per day, her number has jumped back up into the 20's. Based on this information, the doctor has ordered another EEG that they'll put on in the evening so they can catch her usual morning cluster of seizures after she wakes up.This also means another night in the hospital which Josie is not going to like. Hopefully we can get in and out quickly and she can get some sleep. They are also going to try and catch these on video so the neurologist who hasn't actually seen Josie yet will get a chance to see the seizure and hopefully get a better idea of what type of epilepsy she has.
Speaking of that, the doctors think it's either MAE or CAE and have referred us to this website which has been helpful emotionally: Doose Syndrome It's reassuring that others have had to go through this but at the same time, I don't want to fully realize or accept that our little Josie has to deal with this forever. Or for a while. Also, seeing that it can get worse is hard. Trust me, I realize and appreciate that there are worse things but it's pretty hard dealing with what's on our plate now.
So for now, we are doing lots of research, waiting for the EEG appointment and Josie is staying on the Clobazam at 5ml twice daily. Poor kid has a cold on top of everything. Yuck-o!
By now Sophie's an old pro at this dance class business, but Josie wasn't quite ready to jump into the thick of things when we first got here and signed Sophie up for it. Recently she did the entire routine by herself from the sidelines, and the teacher said she was ready. I think she was right, see for yourself (and notice how careful Sophie is help Josie through it all):
First Dance Class Video
I'm still having a bit of trouble controlling my emotions. Last night, was like a dream. Our world has changed. There is renewed hope. I talked with Dad last night at length and he was very lucid. We laughed and he didn't know but I cried. I kept it together until I talked to Connie before Dad. Hearing her joy and sharing her tears is something that I wish everyone of us could have shared at that moment. We were on the phone when the first predictions hit the tube. I was stoked when Clinton won but last night was beyond comparison. I haven't felt that much hope and inspiration in our process my entire adult life. I asked Dad if he ever thought a black man would be president in his life time. He told me he didn't have that much faith in our people before last night. Sharing that moment with him was so special. I haven't experienced that kind emotion since Bobby was assassinated. How wonderful it was to feel jubilation of such magnitude instead of sadness and despair.
Let the naysayers, conspiracy theorists, and paranoid war mongers continue to have their say. I have every confidence that we can and will be a positive force in the world without resorting to the gun. Dialog, alliances and appeasement will be our weapons of choice. I know I'm considered an altruistic fool but we surely are headed down a better road. I'm sure it will be rocky and they will try to break our will, they thought they already had.
A local rancher who considers himself pretty damn important around these parts drove past me at the grocery this morning. The look of shock and hate in his eyes was very apparent. Amazingly I have known this man for thirty years and thought there was some level of neighborly connection between us. I smiled, waved and mouthed "how are ya Keith". He drove off shaking his head. I think my Obama sticker might stay on the old truck for a while. Oh man am I gloating.
We'll be talking with our doctor on Friday and discussing her dosage again as well as firming up a time to meet with the neurologist for a more long term plan and to answer the 1 million questions that we have regarding epilepsy. I both love and curse the internet at times of medical uncertainty.