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.