I’m being an early morning Starbucks writing douchbag

Well doesn’t the tittle explain what I’m doing? 10 minutes into the trip down here I realized I forgot to bring a to go cup with me, I despise drinking from disposable cups, it takes me hours to finally manage to drink an entire coffee, and I’m clumsy so really a good quality insulated travel mug with a well sealing lid is my only option. I made do yesterday but this morning I wandered down to the Starbucks a couple blocks from Easter Seals House to pick up a coffee and a decent travel mug. Since I’m here and I have coffee and there are tables and everything I figured I might as well pull out my iPad and keyboard and get to updating everyone on the events of yesterday.

We woke up Princess at 6:45 so she could take her meds and have some apple juice before her fasting began at 7:00. at 8:30 we loaded Princess and Buttons into the double stroller and headed to the hospital. after a short wait we were taken into daycare surgery where they almost cancelled her tests because of her chronic vomiting and lose bowels that are caused by the coctail of meds we pump into her tiny body everyday. Thankfully I managed to get them to realize that not being able to have the tests after having stomach upset would mean we could never get the tests done and they went forward. She was so brave, didn’t even flinch when the IV went in and was out within moments. I don’t like seeing her like that, it’s not like sleeping, her eyes rolled back and sayed a little open but she was completely out. I will admit I almost lost it, and I’m really glad she picked me to go with her instead of Papa Bear because I don’t think he would have been able to hold it together. It took longer than they expected for her to start waking up in recovery so I was pacing the floor in full blown mama anxiety by the time they came to get me. Princess woke up and had no pain which was awesome, she was groggy and a little grumpy and disorientated but all in all it went really well. We left the hospital arund 12:30 and went back to the house.

The no pain from the spinal tap thing didn’t last long I’m afraid, Princess was walking from the bed to the table to have something to eat when she decided she should start jumping, it was like a train wreck in slow motion as I realized what she was doing and tried to stop her it was too late. She sopped said “oh no that wasn’t good” and collapsed. She has been in a lot of pain ever since. We go back to the hospital today to see her Neuro and get the preliminary test results so if she is still not able to stand up we will have to get it looked at.

The Neuro should have most of the tests back by now, the preliminary MRI report that will tell us if there was anything big and obvious seen, the cerebral spinal fluid glucose test which will tell us if she has any sort of meningitis (highly unlikely)and more importantly if her body is properly transferring glucose to her brain. If there is a problem with the glucose transfer she will likely need to be on a ketogenic or crazy strict Atkins type diet so her brain can get ketones instead of glucose, shitty but doable. I’m really trying hard not to google every possible cause and get myself all worked up when I know we will ave the results in just a few hours but I’m a control freak google addict so you can imagine how well that is working for me.

I took Buttons to Metro town with a friend of mine last night and we hit build a bear, $120 later we walked out with pony for her and Princess, a bear for Monkey and a spike the dragon and pair of roller skates because i couldn’t resist. If Princess is feeling up to it today we will go to the science centre or shopping after her appointment so she gets to see something other than the hospital and the inside of our room. I hope her back is better because if it’s not the bus ride home is going to suck! Nearly 28 years after I had a spinal tap following a febrile seizure in a swimming pool down in the states and I can still very vividly remember how much it hurt to walk and how horrible every bump in the road was. Maybe we will have the bus to ourselves again on the way back and she can lay in the bed instead of having to sit in a seat. We will see.

Well I’ve been doing this writing in public thing long enough I think and I’m starting to get self conscience about the fact that I likely look like just as much of a douche as the guy in the corner with the laptop does so I’m going to head back to the house and see if the kids and papa bear are up yet.


Lets talk about epilepsy

At last we spoke I was waiting to get results from a sleep deprived EEG on Princess.
We got the results, the next day actually because the tech rushed them to the neuro. The verdict: petite mal epilepsy. So now begins a new chapter on a new journey in completely unchartered waters.

I haven’t written sooner because If I had it would have been really angry and sort of whiney and I don’t like to write like that. I love my kids and do my best to accept them the way they are while doing everything in my power to teach them how to also survive in a world that is only starting to get the message that different doesn’t equal broken. Coming on here and ranting does nothing to further the goal of acceptance and understanding so I try to avoid it. That said I will admit I’m just now at a point where I’m not consumed with anger.

I was angry! Really really angry that the universe seems to think I have limitless amounts of energy and patience and drive to not only support one child on the spectrum but also another waiting for assessment and now another different debilitating neuro-disorder in my other child. I’m over the self pitty part now but I’m still pissed off that Princess has to deal with this, that she is going to start school in a few months and may still have bladder control issues from the seizures, that she is so incredibly smart but may still struggle in school because the constant seizing and recovering, seizing and recovering may interfere with her ability to take in and store the information she is given. That pisses me off! It may always piss me off, but at least for now I’m not letting it dominate.

She is responding to med’s, we have seen a reduction in the frequency of seizures already so that is good news. Unfortunately the seizures we are seeing are longer and often involve twitching and loss of bladder control. We see the pediatrician again tomorrow and hopefully she will have some positive insight to offer and hope that the seizures will be controlled and ultimately out grown, until then we are going to keep getting up and doing our best every day.

Princess’s turn

I do mean to write regularly, honestly I feel better when I’ve sat down and unloaded some of this through the tiny little keyboard on my iPhone, but recently I’ve been so overwhelmed I haven’t really known where to start.

If you’ve read previous posts you would know I have one beautifully neurotypical child, one easy, smart, outgoing, social little girl who has never had any health problems bigger than an ear infection, never had an adverse reaction to vaccines, and has never shown any if the signs of autism or sensory problems at all. I love all of my children with every fiber of my being but I’m not going to lie I’ve always been very thankful for my one “normal” child, the one that can go to ballet and walk down the street with me without needing to be on a leash or strapped on my back to stop from running into traffic, doesn’t need special clothing or a IEP at school, doesn’t have doctors and therapy appointments constantly. I took for granted her health and now it’s coming around to bite us and I’m far more overwhelmed with fear and anger than I’ve ever been when it’s come to Monkey or Buttons and their issues. I feel guilty that I feel like this, I feel angry that I wasn’t allowed just one little price if normalcy in my life, I’ scared for what lies ahead for my baby girl and I don’t know how I’m going to find the energy and strength to start a new unknown journey while still traveling the road we are on.

Princess has always been sort of flighty, she buzzes around from flower to flower spinning circles and dancing in the rain. She gaps out and loses her train of thought a lot and I’ve never thought too much about it until a little over 4 months ago. We were standing in the kitchen and she was negotiating for some treat in the cupboard, I was looking right at her, we had direct eye contact and right in the middle if her sentence she stopped dead, her eyes fixed and she just stopped. I called her name twice with no response then she just started talking again, right where she left off as if she hasn’t just taken a 3 second break. I asked her if she was ok and she looked at me like I was crazy, of course she was ok. All the alarm bells went off in my head, I scoured my memory banks recalling images of a little girl I used to have in child care and rec programs I ran at the community center, the little girl who was always going for EEG and sleep studies, the one who lived with her very stressed and overwhelmed grandmother who was always watching her and working with her neurologists to try and find the right combination of expensive medications to control the seizures she had every day, every hour, where she would gap out and lose seconds of her day to nothingness, blankness a stare and a twitch from a bombardment of electricity that ripped trough her brain uncontrolled. All of these thoughts rushed into my head along with panic and fear all in the 3 seconds that princess stared blankly into my eyes.

I started keeping a closer eye on her, I saw her blank out a few more times, standing at the kitchen table she stopped again in the middle of a sentence this time she wasn’t still, her body went stiff and her torso jerked hard four times, by the time she snapped out of it I was beside her talking to her, asking her again if she was ok, again she thought I was crazy but now I knew for sure there was a problem, I made an appointment to see our family doctor.

I hate going to the doctor, I spent so many years fighting to get monkey in for assessment that I honestly feel like every doctor I talk to thinks I’m making shit up. I mean really what are the odds right? On with autism and an alphabet soup of other diagnoses, one wanting to receive her own alphabet soup of labels and services and now one with seizures. The doctor put in a refer all to the pediatrician Monkey and Buttons see and we went home to watch and wait. We have been watching and waiting for 4 months. Finally last week Princess got her appointment.

During the office visit the doctor did a full work up, got Princess to walk on her toes, her heels, touch her nose, answer questions, she had 3 seizures during the examination. I can say seizures now because the doctor confirmed that they are definitely seizures. She wasn’t sure if they are absence or complex partial seizures though and apparently the treatment is different depending in the type so we are headed to Kelowna. In two days for a sleep deprived EEG. I’ve been keepin track of the seizures I see and so far I’ve seen between 10 and 20 each day, some short, some longer, some with twitches and some with loss of bladder control. Public health is visiting the daycare this week to do seizure training and I’m meeting with NONA to fill out some paperwork for support child development, since Buttons was already in their wait list and now Princess is too, they are fairly confident they will be able to fund a one on one in the daycare since it will actually be a two on one and will kill two birds with one stone, yay cost effectiveness.

I’m starting to research the anticonvulsant meds available and some of the side effects are scary as hell. I don’t know how we will pay for them and I’m scared for what lies ahead for my baby girl. I’ll post again when we know more.