Busy Week

November 13, 2019

It was a busy week last week, with another couple more on tap. Last start at the beginning, on last Tuesday Olly had her 18 month appointment. Great news she has gained 3 pounds since she left the hospital and is overall in good health. She was lucky enough to get a couple of shots at the appointment, that went about as you would expect.

Later that day we had a follow-up appointment with the surgeon that placed her g-tube, who said everything was looking great. We will see him again in February when we will learn how to replace her button. 

On Thursday we had a 3 hour EEG to check for seizures. Dad was lucky enough to get to take her to that appointment. Really the EEG is pretty simple, they connect a bunch of stuff to her head, monitor her brain activity, while doing a few things (covering her eyes and flashing lights) then let her do her thing which in this case was sleep.

During the EEG they did notice some really small seizure like activity. Our neurologist said that the seizures are not causing any brain damage. He said they are basically just annoying to Olly and that they are likely causing issues with sleep. Which would explain why she seems to be tired all the time. For now we are upping her anti-seizure meds and that should take care of it.

One more appointment rounded out the week. Olly got her eyes checked again on Friday. Lora took this appointment, trying to split them up some when we can. Olly’s prescription stayed the same, which is a good thing. That means that her eyes are staying strong and that the disease isn’t progressing in her eyes.

On Tuesday we went to Shriners Hospital and Clinics about Olly’s spasticity. It was a great appointment that came with different answer than we thought we get with way more support than we ever thought they would provide.

We met with ortho surgeon who was impressed with Olly and believes we should try a natural route with Olly’s spasticity (stiff limbs) and NOT do Botox yet. Olly had xrays of her hips and those looked great!! 

Also met at Shriners with PT and OT and they are going to do a complete eval next Friday and help us determine which equipment we need (wheelchair, adaptive stroller and car seats, standers, etc) and more solid plans for PT and OT things to do at home. 

Next met with social worker and financial counselor to apply for financial aid with them since insurance will likely not cover stuff. We were told not to worry about expenses. What a huge relief.

Also met with Shriners peds orthotics and prosthetics and got molds of Olly’s feet so they can custom make afos (foot braces) to help her with her always pointed toes. God story-one of our good friends Melanie from church was there and helped for Olly!! 

Olly was a trooper through it all and brought home a new quilt, dolly, and Peppa Pig toys. They are wonderful at Shriners!!!

Our last appointments in this cycle will be next Monday when we will have a follow-up with neurology to discuss the recent changes and what is next. We will also meet with a researcher at the U of M that is working on some stuff relating to Tay-Sachs. Again looking at where we go from here asking the famous question What’s Next (you West Wing fans will get that reference).

All of that leads up to a much needed week away. Time for our annual trip to the Dells.

One last thing that I want to make sure everyone knows about we have a few friends that have started planning a benefit for us on Saturday, February 22nd at the St. Francis American Legion. More information can be found on the Facebook Event. 

Thanks again for everything you have done and continue to do to support us. We would truly be lost without your support