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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Friday, May 14, 2021

Up North Season

This week we have two more meetings to try and get Lauren on the list for the Medicaid waiver program. I am so hopeful but also skeptical. Time will tell.

Lauren did get her new bike!! She LOVES IT! She does so great riding it around our block (just over a mile). We've also had success getting her to walk around the block if I play a Disney soundtrack on my phone so she can dance her way through it. I haven't yet found an unpaved hiking trail I can take her to by myself for the summer (too hilly) but we do still have the state park closeby with a paved trail and a fun park to use as an incentive! I'm excited to get her moving her body this summer and feeling healthier.

We're going up north to the camper this weekend, finally! It's been over 7 months and we are so ready. We've gone some projects planned for our actual home this summer, so I'm looking forward to that too. We're going to have a fun summer!

I restarted my hydration infusions this week at a new infusion center. It went great! They knew a lot about POTS and everyone was so nice. I felt well enough to do a 2 mile hike the day after which was really fantastic. I've been still really fatigued and needing a nap almost every day (except for the days I work when I go to bed at 9pm, LOL) but I've really just started the new medication and haven't titrated my dose upward yet. I'm hopeful to get some relief soon. It's like a cycle of sleep and exercise. I feel better overall if I exercise, but if I exercise I don't have enough energy to get through the day without a nap. I'm thankful that I have the time and we have the ability to make this happen for our family. I'm able to be so much more present (and less bitchy, I hope) since I have more time to devote to my own health.

Check out this gem! How is it I can get a better picture with my iPhone on my front porch than Lifetouch can get with their fancy equipment?