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.

Can’t sleep

I can’t sleep, I’m tired and I know we have a big busy day tomorrow but I can’t turn my brain off. I’e held it together better than everyone else until this point and now all the fear and anxiety that I should have been dealing with for the last two weeks is hitting me now. I’m sitting by myself in the 3rd floor common area of Easter Seals house, alone in the dark. I know every single other person in this place is here with a sick kid and it’s making me think about all the things that might be causing Princess’s seizures. She has started getting strong headaches along with sever photosensitivity and that scares me too. On solstice when we welcomed the new sun and choose something to leave behind from the previous year she put her head down and whispered “seizure activity”. Yesterday she told me with tears in her eyes that she just wants to be like everyone else, just plain old Princess again and it breaks my heart to see her hurting like this both physically and emotionally.I want there to be a simple answer to what is happening in her little brain, something simple and fixable. When we started this journey almost exactly a year ago we were told that the chances were good that she would start medication and never have another seizure again, kids with absence seizures usually grow out of them, Ethosuximide is an amazing drug and after 6 months or a year it will be fine. Why the hell couldn’t the doctors and nurses been right? Why now have we gone from a few generalized petite mal seizures a week to several a day to hundreds a day to drop attacks, jerks, apparent simple and complex partials and tonic seizures, vomiting every day, weight loss she can’t afford, constant sleepiness and headaches that make her scream and clutch her head like it’s going to explode? I’m so scared something is going to show up on the MRI, I’m scared that there is going to be a more sinister underlying cause to all of this and I’m scared that like my mother’s cousin tey may never find a reason and in turn never find an effective treatment. I’m trying to be brave because Princess is being so brave but I’m so scared I want to scream and cry and curl into a little ball and cover my head and pretend that none of this ever happened. No wonder sleep escapes me.

Children’s Hospital January 2013

This morning we woke up at 5:30 to head down to children’s hospital. Our water was frozen and something had burst spraying water everywhere under the house. Frozen pipes are one of those things that make living in a trailer almost not worth the cheap mortgage. So we have shut off the water and my mom and brother are going to try and sort it out for us; thank god for family.
So now we are on the shriner care cruiser. If you don’t know what the care cruiser is it’s a luxury coach operated by the bc yukon shriners that picks up patients and their families that need to travel to get to medical care at BC Children’s’ Vancouver General or Shriners hospital in Seattle. The bus is free, there is a bed for someone that needs it, seat belts in every seat that adjust for kids so you don’t need to lug booster seats and even car seats installed for little ones that need 5 point harnesses and recliners for napping. It makes 3 trips a week to Vancouver and back and did I mention it’s free! I have much love for the Shriners.

We got picked up in our town at 8:15, now we are on our way to pick up another family on the other end of the valley and then we will be off to Vancouver. We are staying at Easter Seals House, another amazing resource for parents of kids that need to travel to BC Children’s, the cost to stay at Easter Seals house is $20 per night for adults and $7 for siblings traveling with you, the patient stays for free. So super cheap accommodation on a few blocks from the hospital and 2 minute walk to catch a bus to the sky train station to go anywhere in the city you want to go. Now if the super cheap rates weren’t enough each room is actually a small suite with a kitchenette so you can eat in the room and save money on food while you are there, oh yeah and if you live in BC the super cheap room rate is covered by the bc resident program so actually it’s free. Yay for low cost trips!

So now that we have covered how we are getting there and where we are staying let’s get to the why we are going. It is time for Princess’ 3 month check in with her neurologist, since there has been new seizure activity and general feeling like crap he will be getting some tests done this time. She has an MRI and spinal tap scheduled for first thing tomorrow morning. Because 5 year olds have a hell of a time staying still for more than 2 seconds she will be put out for the imaging, thankfully that means she will also be out when they do the spinal tap. Hopefully this will give us some answers as to why she is getting worse instead of better and maybe give us a better idea of how to treat this. I’m scared to death that something will show up on the MRI that shouldn’t be there but I’m trying to keep that out of my brain as much as possible. I’ll keep you posted.

2013 Year in Review

Oh what a year…… I know, I know I said I would write more and instead I stopped writing all together. Honestly I had a good reason to slack off on the old blog, actually I had several really good reasons ; Monkey, Princess and Buttons are 3 of those reasons, work, illness and depression are a few more but hey you know new year new beginning and all that so onward into 2014 and my New Years resolution to actually blog regularly!

I will update this blog, I will share our stories, the good, the bad, the messy and disgusting, the simple and the magical. I might not rite everyday because really now I just took a 7 month break but at least 3 posts a week is my goal. Before I can jump into the present I need to bring everyone up to speed (if there’s anyone actually reading this anyway) so without further ado I bring you the velcro and video games 2013 year in review.

January – 2013
In January we were chugging along like normal, we had had a couple of months to process Monkey’s ASD diagnosis and were just waiting for the paperwork to be processed so we could start getting him into therapies. He had an IEP in place and was finally getting som CEA aid time at school. Papa Bear got into a union job so medical benefits were coming soon and everything seemed to falling into place until Princess started seizing. I saw the first one and didnt believe what I was seeing, two days later I say another and I knew she was having absence seizures. We saw our family doctor, get a referral to see the paediatrician and began a new wait for a diagnosis. At the same time Buttons was put on the wait list for an ASD assessment.

February – 2013
Buttons continued to gain some language but her frequent meltdowns were becoming more violent. Everyday Princess had more and more absences and we continued to plug away waiting for information.

March – 2013
Funding cam in for Monkey to start seeing a psychologist, we found a good one and he started bi weekly sessions. his IEP was adjusted to allow him to use more technology to assist in written communication. Princess was having clusters of seizures now, 200 or so a day and getting stronger and longer in duration.

April – 2013
Princess finally gets in to see the paediatrician, she had several seizures during the office visit, an EEG was ordered and a follow up appointment set. The EEG was a week after the appointment and we had the results the following day. Absence seizures, petite mal epilepsy, 200-300 seizures a day. we started on Zarontin (ethosuximide) and started to see a reduction in seizures almost immediately.

May – 2013
Princess is registered for kindergarten, paperwork filled out explaining why she needs extra supervision and help, doctor recommendations for CEA support, meeting with the Learning resource Teacher and everything is set. Each week we increase the dose of zarontin and she has fewer seizures but by the end of the week they are back again. Buttons has a date for her ASD assessment, a week after her 3rd birthday she will be given a psych ed evaluation and the ADOS test. I have to go for an CT scan on my back, something went “POP” when I was wrestling Buttons into her car seat which resulted in me not being able to walk for a week.

June – 2013
button’s Birthday went great I can stress how much I love having her birthday parties in our backyard, it’s so nice to not have to be inside or at a venue. It was a weekend of normalcy before her assessment. The assessment was interesting…. I’ve never seen her be more cooperative or social as she was that day. We were not given a diagnosis that day, we had to wait a week for the psych to review the results along with the information she had from supported child development, speech, daycare, our parent surveys and videos I sent her from daycare. In the end she was diagnosed with PDD-NOS or high functioning autism. Not a surprise to us at all and somewhat of a relief because now she will get the support we never had for Monkey. My back is feeling much better, just waiting for the CT scan so my doctor can clear me to skate again. I need t get back on the track!

July – 2013

CT results are back and I have 4 compressed and 2 herniated discs in my lower back, a degenerative spine and stenosis (narrowing of the nerve channel) on one side. My doctor asked if I had been in a bad car accident or something. Nope! Just lucky I guess. Anyway thanks to the strength of my abs and back muscles he cleared me to skate again! I skated in a scrimmage on Friday night, took a good hit and tweaked my back so decided to take it easy for the rest of the night, half a scrim is better than nothing. Sunday I had horrible abdominal pain, it felt like ovarian cyst pain to begin with but got so bad that is felt more like active labour than anything else. I had Papa bear take me to the ER and we got a hell of a surprise there. It’s common practise to give a pregnancy test to any woman of child bearing age that has any sort of abdominal issues, well mine came back faintly positive. Blood test confirmed it i had elevated HCG levels even though I was mid cycle with ovulation symptoms and had an IUD in place. The IUD was removed and blood tests ordered for every other day to monitor my HCG levels to see if the pregnancy was viable or ectopic. The next week was an emotional roller coaster like I’ve never experienced before. My HCG levels went up a little then dropped then went up a lot then stayed the same. It was almost certainly an ectopic pregnancy. I had an ultrasound and nothing was visible but a large cyst (yep that’s right I ovulated while already pregnant) the OBGYN decided to wait and watch, and schedule another ultrasound the following week because if he couldn’t see the ectopic on ultrasound he wouldn’t be able to see it during surgery. I never made it to that ultrasound. I started throwing up, I was in so much pain I couldn’t stand and we went back to the ER. The OBGYN decided that Evan though he still couldn’t see the ectopic it was time for surgery. He went in to take both my Fallopian tubes. During the surgery he got a hell of a surprise. After removing the second healthy tube he found a pool of blood behind my uterus, after cleaning it out he found the ectopic mass implanted into the major artery, it couldn’t be removed without me bleeding out. In order to stop the cells from growing and eventually rupturing the artery I had to take a round of chemotherapy, I have felt so sick in my life. I had some internal bleeding following the surgery but it subsided on it’s own and everything worked out ok, chapter closed.

August – 2013
We add drop seizures to the mix.

September – 2013

Remember back in May when I got everything in place for Princess to start school with the necessary supports she would require to be safe and hopefully not miss out on too much, yeah well the district lost all her paperwork. As soon as the school opened and the staff were back I started calling the principle to find out exactly what was in place and they didn’t know, they had to hire a new LRT, the district special needs coordinator had to call them back, they needed to hear from someone or find something and in the end it turned out that the school board office lost all her paperwork so nothing was in place for her. I spent the first 2 weeks of school in her class or sitting in the staff room incase she had a bad seizure because no one in the entire school had seizure training. We are still fighting about aid time and I don’t see that changing anytime soon.
Buttons started ABA therapy this month too, we found a Behavioural consultant that doesn’t charge travel time and is pretty laid back and encourages lots of floor time and flexibility. We hired on Buttons’ supported child development Aid from daycare as her her primary behavioural interventionist, re-arranged the living room and got everything started.
Princess had her first appointment at BC Children’s hospital, the first time seeing an actual neurologist her med were increased and adjusted and we go back in January.

October – 2013

Princess is 5! I can’t believe how fast the time has gone. We had a great party at the science centre with all the girls from her class, they made bath bombs and lipgloss and had the entire centre to themselves.
ABA is going good for Buttons, she is adjusting to the new routine and I’m quite enjoying not having to drop her off at daycare I the morning since her BI takes her.

November – 2013

The honeymoon is over with Buttons and ABA

December – 2013

This is the first year Monkey won’t be here for Christmas, it sucks.
Monkey had an OT assessment done to see if there is some physical reason why he still can’t write, nothing was found, looks like it is all neuro. Buttons hates ABA, I know hate is a strong word but god am I looking forward to her having a little bit of a break over the holidays. We are all set up for Princesses trip to BC Children’s. Papa bear, both the girls and I will be hopping a ride on the Shriners Care Cruiser and staying at Easter Seals house, our only expenses will be food and entertainment, yay!
A few days before Christmas Princess had a strange seizure, standing in the kitchen she lost her ability to form words properly and her legs started to shake. After about 20 seconds she became aware of what was happening and became terrified because she couldn’t stop the shaking. On Boxing Day we went shopping to get a few good deals and my gift! After about an hour in target Princess said she was tired and didn’t feel well and asked to sit I the cart, I lifted her up and within minutes she collapsed unconscious and her left arm was twitching constantly, it lasted a little over a minute and the. She slept for awhile, when she woke up she didn’t remember anything from an hour or so before the seizure. A few days later she collapsed in the livingroom, I laid her on her side and she was stiff as a board, no jerks or movements of any sort just completely tonic for 2 full minutes. I phoned BC children’s and they have scheduled her for an MRI and Spinal tap when we go down.

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.

New daycare

Two posts in two days, I think that’s a record for me lol

I couldn’t sleep last night. My brain won’t turn off and When I do fall sleep I have weird dreams that wake me up. Oh the joys of stress.

The girls are starting at a new daycare today. We had a play date there last week and it looks like it will be a good fit. She doesn’t seem like she is overwhelmed with all the stuff that goes with having the girls and she is super flexible. She’s fine with cloth diapers which is awesome, and she seems pretty laid back and a little bit crunchy; my kind of gal. Public health is coming in on Thursday to do seizure training with her so she can recognize them and know what to do if princess or buttons have a big one an hopefully we will have an aid to help out soon.

Princess needs to be kept awake half the night tonight, which of course means so do I so the little sleep last night is going to hit me hard when I’m trying to keep her awake at midnight and have to get up at 5:00am. Poor kid she loves her sleep so this is going to be interesting, I think I’ll pull the therapy trampoline into the livingroom so when she starts to get sleepy we can bounce it away.

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.