We had lots of fun and took many weekends away as a family. We spent several weekends down in Gig Harbor at Oma's and Opa's beach house paddle boarding, wake boarding, kayaking and relaxing. We made it up to the cabin twice. We went out in the San Juans on Ahma and Bobpop's boat for several days and took a car trip to visit good friends in Spokane.
During our summer adventures Elin turned 3. We celebrated her birthday while we were on the boat and she enjoyed her wrapping paper and carrot cake.Summer wasn't without excitement however, as Elin continued to have seizures every two to three weeks like clockwork. At first she wasn't clustering but the most recent ones have been a bit more dramatic (if that's even possible for this child) and they come in groups of 2 or 3 every 4 hours or so. It's made for a summer full of ups and downs for our family.
Anya kept busy with soccer camp, art camp, and rock climbing camp. She was able to spend a lot of time with her cousins and is fully enjoying her American Girl doll. The doll might have a bit of personality disorder however since her name has been changed multiple times, but I digress..... oh ya and she lost two teeth.We were given a wonderful gift this summer. A very good family friend (shout out to Ashley Doran Northup) contacted a non-profit organization called Soulumination on our behalf. She explained our family's difficult medical circumstances and they agreed to take family photos. They commonly work with families that have terminally ill kids but I guess we hit a heart string and they were happy to offer up their services. We met with a brilliant photographer at Luther Burbank park on Mercer Island and the pictures all turned out beautiful. They even made little photo album books for Anya and I and made laminated photo cards for Myles to put in his wallet. It was an incredible experience and we feel so fortunate to have friends in our lives that go out of their way to bring joy to our family.
This week is HUGE for the kids (and me to be honest). Anya starts full day kindergarten at Hazelwood and Elin starts preschool at Meadow Crest four days a week. My little girls are getting so big-how did this happen?
As far as Elin's medical issues go we have had many changes over the past few months. Her medication has changed so many times I can't even keep up. She has had to have blood draws every few weeks and once she was poked FIVE times and they still were not able to draw enough blood for the labs. That was tough to watch- she is such a tough little girl though. I admire her courage all the time.She has more bionic equipment now too. She was fitted with AFO's (ankle/ foot orthotics) and they have really helped to improve her standing posture. Now if we can just convince her that her gait trainer is "fun" maybe we can make some more headway towards walking.
We just visited the SCH ED (emergency dept) today for a swollen eye. She started another new medication (Onfi) last week and it has been making her agitated and really messed up her sleep. She started getting a really puffy right eye and I took her in today because it was swollen shut. They aren't sure what caused it but they don't want to say it's the medication however the timing is suspect. Thankfully the neurology team is allowing us to skip the new med for a couple days until the swelling goes down. After that I'm not sure what the plan will be.
Other big news is that she is having a PET scan of her brain this Wednesday. Technically it is supposed to be her first day of school but this is WAY more important. It is a 6 hour procedure with EEG work, anesthesia and the brain scan. We are hoping to find out some more information about whether or not she could be a candidate for surgery. After they have these results our epileptologist plans to present her in clinic to the other neuro guru's in hopes of hatching a plan for our little girl. Big to do's coming down the pipe!
