It has been quite a year, with so many medical challenges for Brooklyn and Brayden...We spent too many days at the Children's Hospital and in the span of 6 months, did 8 sleep deprived EEG's and 2 MRI's. It was a year of full of growth for the the kids, our family and all those involved with our family. It was a year to be reminded of digging deep until we get the answers our kids deserve and need.
Brooklyn ended up with a diagnosis of Epilepsy. Which we wouldn't have discovered, if Allison didn't push for answers to 'why the struggle, and why are we getting nowhere". With the insistence of looking back at reports from two years ago, some 'unexplained activity in the brain', led to numerous tests. Which then lead to seeing 'seizure like activity', meaning medication - that gave our family a run for our money, with Brooklyn reacting negatively. They were meds that she needed to titrate off of, which was a long three month process.
Brayden had the worst EEG of his 10 years of epilepsy, which lead to an aggressive treatment, which sadly lead to him having a full on seizure at school. He then ended up on 24 hour supervision, not being able to even go to the washroom or bath on his own (pretty hard for a 13 year old). Massive change in medication was needed again. We went for numerous trips to the Children's hospital including 3 trips for practice MRI's, and then many more trips for more tests and appointments.
With two children with Epilepsy, we needed to make sure all was okay for the third, so Bradley had a sleep deprived EEG, which ended with 'we aren't sure what we saw'...so back for a second sleep deprived EEG for him. At this time they believe the results are only a snapshot in time, but do not believe there was anything to be concerned about.
Last Week, we had 2 more sleep deprived EEG's and then a clinic appointment for all three kids. Although there are some parts we need to remain concerned with, and slight medication adjustments, we ended with a celebratory appointment -- all the kids are on track for what they need, we have discovered what we need to discover, are on medications that control the seizure activity and have a plan going forward. We got the all clear to go on our summer adventure - to get away from it all (and have a neurologist on call phone number, just in case)
Brooklyn ended her school year with a teacher that said 'how much she grew' meaning both Brooklyn and her.
The year was also full with Allison traveling to conferences, meetings, and announcements in her role as President of Alberta School Councils Association. She was also busy with her work as usual, and Duane busy with his work, too. Brayden enjoyed a year with scouts, and is excited with getting to go to Canadian Jamboree in a couple of weeks. He also enjoyed his first year in Air Cadets, receiving Top First Year Cadet. Bradley grew so much and really connected with his youth group he attends. Brooklyn struggled to make it thru much this year, but ended the year attending the last bit of Brownies and the year end camping trip.
We also, sadly, needed to make a trip to Newfoundland in May, for us all to share in the memories of an amazing woman - Aunt Mamie. She was a second mom to both Duane and his brother Dean, as they grew up. Many of their adventures and experiences in life included or were because of Aunt Mamie. She made a difference in so many young people's lives and an entire community. We were also lucky enough to have her live with us in Grimshaw for a year, where she was with us for the birth of Bradley. So many great memories we have, but we had to say good bye to her. It will definitely be very hard going back this summer and her not being there to join us on our adventures.
And with all that to end off a crazy, busy school year... we are off. Off on an adventure...Allison will still be working every second week, but we are off across the country. We are headed to Ottawa for Canada Day and we get to meet Uncle Jason's girlfriend in Ottawa and visit with other family in Ontario. Then on to see what we can see in Quebec (taking suggestions), and spend some time with family in New Brunswick, which is always a great time! Then Brayden and Duane will be off to Canadian Jamboree with scouts. Then onto Newfoundland to see family and friends along the way!
So last night we drove to Great Falls. Today we are on the most boring drive across Montana, curvy, narrow roads with no shoulders. Today is simply a driving day, as we all can't wait for tomorrow's adventures - MALL of AMERICA!!
The first 'how much longer?' Didnt come until 5.5 hours into the trip - much better then three years ago when we were only half hour in.
We got a motor home to drive across the country - which Allison was aLOT scared to drive - still is! She went to get into the drivers seat after quite a ways into the trip today. As she was moving to the drivers seat Brooklyn said "I wish I had two seatbelts!"
It is also crazy that we get unlimited data on our US phone - hope that means we can keep this blog up to date! Bradley plans to take some video tomorrow on his adventures at MOA.
Till tomorrow...
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