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One Billion Stories: Rare Sisters

We have had the honor and priveledge to work with some very special and talented people who have offered to help us tell our story, and create some videos to help raise awareness for our girls. This is just one part of our story. There is more to come.

Basement Update: Help wanted

The Fries part of the basement is coming along! We are on to the fun part of flooring and trim, then onto storage shelves and installing the sensory gym. This being said, we are ready for some extra help. This week in the evenings and this coming Saturday, 11/17, and probably on Sunday afternoon. The BIG goal is to have the storage room ready to be moved into by Sunday night. Not sure if we will get there or not- but hey, its good to have a goal. If you can help with flooring, trim, shelf building, or electrical finish work at all this week/weekend, please let us know. Other ways you can help: We will take your unused duvet covers, stuffed animals, and old blankets to turn into crash p

NIH Day 5: Wraping it up

Today was the last day of testing for the girls. Cecilia had Neuro-Cognitive testing first thing this morning. This was definitely a KIF. There was nothing surprising about this testing, but it is always hard to see the inabilities in your child. She was a trooper through the testing, it can be very tedious at times, and not exactly fun. She also had a echocardiogram and a hip x-ray to make sure that her new posture with her feet is not because of any hip displacement. Lilly had an EEG, echocardiogram, patient photography, and she got to meet with the low vision OT. The low vision OT was very helpful and had several great suggestions for us. Several of her suggestions we have already

NIH Day 4

Lilly had her sedated procedures today. She was not happy about it at all. She had to be fasting, and cried basically from the time she woke up till the anesthesiologists sedated her. She hated her IV. I felt so bad, and my mama heart was hurting for my baby. The only thing that would console her was the Million Dreams song from The Greatest Showman. Her procedures went fine, and they didn’t have to intubate her. She took a while to wake up, and was pretty grumpy when she did wake up. Cecilia’s day was pretty busy. She had an EEG, a neurology appointment, and an OT evaluation. Her EEG and neurology visit were normal, and OT was what we expected. Jon and Cecilia found the chapel at

NIH Day 3

It was busy today. Both girls had several appointments at various departments. Cecilia had her swallow study and speech evaluation, followed by a physical therapy evaluation, photography and then ultrasound of her muscles. All of these tests are done to get a baseline to measure change over time. Cecilia did great, and there were really no surprises. There was a bit of waiting today, so she got to watch her iPad, which she didn’t mind at all. Lilly’s day was supposed to be pretty light, but because of her seizure on Tuesday, we had to add back in what she missed. She had neurocognitive testing, OT, a neurology appointment, and a physical therapy evaluation. The one big thing we notice

NIH Day 2: Sedation, Speech, and a Seizure

Today was a lot. It was intense, and things became very real for us. I’ll start with Cecilia. She had her sedation procedures today. She was sedated for about 4 hours while she went through an MRI, MRS, lumbar puncture, skin biopsy, ABR, and eye exam. Everything went very well, and they did not have to put her under general anesthesia, so she did not have to be incubated which is a huge blessing. She was up and eating and playing with in a few hours of waking up. Lilly’s day was going great for a while there. She had a swallow study done first thing this morning followed by her speech language evaluation. She was rocking her SL evaluation, and doing vocabulary at an adult level. She

NIH Research Week: Day 1

Yesterday, Jon, Cecilia, Lilly and I arrived at the National Institues of Health in Bethesda, MD. We are here to help medical researchers learn more about CLN3 Batten Disease. This is a natural history study, and does not include any treatments for the girls, just a week of all different kinds of medical testing so that the doctors can learn more about the disease. This is so so important. You have to know how something works before you can fix it. This study is also trying to find bio markers for future generations. If they can find a specific set of bio markers, (much like you might find bio markers for DownSyndrome or Spinal Bifida) then any treatments or cures that might come alon

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© 2020 by Rare Sisters Batten Foundation

a 501c3 Non Profit Organization Tax ID 84-44-06415

PO BOX 746561

Arvada CO 80006

foundation@raresisters.org

303-842-2680

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