December 7, 2019
It’s been a while since the last update and that is certainly not for a lack of activity. Let’s see if we can get you all caught up. Warning this is going to take a while.
Since our last post we did something great and truly needed for our family. We left, we checked (mostly) and went to Wisconsin Dells and stayed at a cabin in the woods for a week. It was long overdue and so very needed. We didn’t realize just how tired we were until we got there and chilled for a few days. The Dells was great. It was a ton of just hanging out in the cabin, a trip to MAC’s and the outlet, seeing Frozen 2, and introducing Mara to video games.
Prior to leaving on that trip however we had a few appointments to take care. First was a follow-up with neurology after the hospital stay and because of something found during or shortly after we met a little sooner than first planned. Nothing really new came from the appointment other we know we truly love our team. We have a follow-up EEG with Olly on Tuesday this week. Dad is looking forward to another nap during this 3 hour ordeal.
We also met with Olly’s Dietitian after Neuro and got her formula adjusted. She was doing a great job at gaining weight so much so that they had to reduce her calories. We also discussed moving her to cycle feedings, basically being able to get her a break from being on the pump and be “free” for a period of time. More on that later.
Last thing we did before we left was a follow-up at Shriners with PT/OT. They were great, we now have a more official plan of action for Olly to help keep her body more loose and relaxed. We have seen the difference already it’s amazing to see some of the changes in her. The greatest part is it doesn't totally change our routine.We were already doing some stuff anyways so we added a few more things and modified a few of the things we were doing and we are rocking and rolling through it.
During the trip a couple more appointments got added to our schedule and it was full steam ahead first thing Monday morning. We got in to see Dr. Chester Whitley he works closely with lots of Tay-Sachs kids and happens to be based right here at the University of Minnesota. He was an interesting man with lots of knowledge. I don’t think told us anything that we didn’t already know expect to pump up the researcher that we are working with.
According to Dr. Whitley, Dr. Jeanine Jarnes is the go to person when it comes to understanding Tay-Sachs. In fact in the last couple of weeks she has literally flown all over the place to talk about Tay-Sachs and working to help get some clinical trials off the ground. We met with her for the second time on Monday as well. She was full of information none of it life changing but certainly lots to think about as a family.
We know of a drug they are using here at the U that is showing some signs of slowing the disease. It is hard to say how much it is really doing because Tay-Sachs acts differently in each person. There is also a trial that is close to launching in Boston and maybe one from a French company that will likely have a trial site set-up right here at the U of M. That would be huge for us and many others.
The biggest thing that came from the meeting was that Olly is unique. We already knew this even more unique than we thought. She is classified as having Infantile Tay-Sachs but there is a subset of that, that they are calling late on-set Infantile Tay-Sachs, which is where they are thinking Olly may fit better. At the end of the day it won’t change much for the longer term prognosis but it may help in getting into trials and treatments.
The change comes from information they learned from us on Monday about some of the milestone markers that Olly achieved or didn’t and when she lost the ability to do certain things. One of the big ones was her head control. Most kids with Infantile lose the ability to hold their heads around 6 months old. For Olly she was closer to 16 months. Again because it is so rare, no one really knows what this means for the future but it gives us hope that the disease isn’t moving as fast as it often does.
During our vacation we also started on the cycle feeds. Olly rate of food was increased so she was getting her daily food over a 22 hour period instead of 24 hours. Yea a 2 hour break to just be able to move freely. The only requirements were no vomiting (this would tell us the rate of the feed was too high) all good there, and the blood sugars needed to stay over 70. Small hiccup there. On the first night off the pump sugars dropped to 69. We reconnected and sugars came right back.
We tried again on night two and things went great for a couple of days until to fast forward to last weekend when Olly developed a cough and fever. Sugars dropped in to the 60’s while on the pump. We have a plan for when this happens so not a major worry expect we were not at home when it happened (of course). So after a call to the hospital we got the plan and her sugars came right back up. No more cycle feeding until she is 100% healthy. Fast forward to Wednesday night, Olly starts coughing so hard that she is vomiting. We got an appointment scheduled for Thursday morning.
Olly was in rough space by Thursday morning. Mara went to bed early Wednesday night which lead to her getting over 11 hours of sleep. With Lora and Olly being sick we keep saying that Mara got more sleep than the rest of the house combined. Anyways off to the Dr. on Thursday morning. Olly was in tough enough looking shape that Nate had an overnight bag backed in case they sent to the hospital.
Olly was a trooper at the clinic, she had to be stuffed in a tube for x-rays, get her finger poked, get a nasal swab and get poked at by the dr. Great news it was just a viral thing that we have to let pass. By Friday night we had already seen great improvement.
As if that all wasn’t enough Lora and Olly went back to Shiners on Friday to get Olly’s afo’s. So far the first day went great. The hope is that they continue to support provide proper alignment of her feet and ankles helping to keep other muscle groups from becoming overly tight.
Last thing before we head off to see Santa. We are excited to announce we are selling T-Shirts, Long Sleeve Shirts, Crew Neck and Hooded Sweatshirts to help raise money to offset the growing costs. You can visit Ollybelle.com or Click Here for more information or to order. Shirts can be shipped to you anywhere you live.
Thanks for all of the love, support and prayers. You guys truly are the best.