An (overdue) Update

October 22, 2018

Please forgive the extreme tardiness of this update.  We've been busy busy busy.  Busier than I'd like, but I'll take it over the other option.  We are grateful that we've been able to be busy traveling, getting back to school, settling into the house, and making memories.  This post is probably going to be long, but I'm hoping to catch you up on how things are going.

 

How are the girls?

They are doing ok.  We are seeing changes in both Cecilia and Lilly.  Cecilia's vision is declining sharply right now.  We think that she is primarily only seeing out of the right peripheral of her right eye.  Her stance has changed drastically too.  She stands and walks with a severely turned in left foot.  She has yet to trip herself, but we keep watching for it.  Cecilia is also headed straight into puberty.  What we've learned is that Batten girls are susceptible to early puberty onset.  Its really not fair at all.  We (mostly mom) is now in the dilemma of how to have the puberty talk with the 9 year old who has a cognitive ability of a 4-5 year old, that is 90% blind.  I have a book that was written for talking to down syndrome children about such things, that I'm hoping will give me some tools.  They other major key with puberty, is that it tends to accelerate the Batten Disease symptoms- primarily seizures.  Everyday we wake up, wondering, if this  will be the day she has a seizure.  

The biggest change with Lilly has been her behavior.  We feel like its de ja vu from when Cecilia's vision started to decline and her behavior changed.  Lilly has become angry, violent, and inconsolable at times.  Its very difficult to see such sudden changes and not recognize your own child, and worse, not know yet how to co-regulate with them.  When Cecilia did this, we sought out treatment for sensory processing disorder.  But now that we know that Batten disease is the culprit, we are not sure what to do.  I'm sure that Lilly could benefit from OT, and we are looking into different ways to incorporate that into their lives (including therapy horse riding).  We have also increased her seizure medication because it also acts as a mood stabilizer.

 

How is school going?

Their new school is good, and has been a positive change for them.  They are both enjoying their classes, and making new friends.  We've been very happy with their team of teachers and professionals that make their days enjoyable.  They have been riding the bus to and from school, which is new this year.  The bus has had its challenges for them- close proximity, loudness, and little supervision, has led to a few battles that have sent them to the counselors room to learn how to be nice to each other again.  

 

Traveling

When we got diagnoses, we immediately wanted to travel with the girls, before it became too difficult and not enjoyable.  We wanted to go and see and do as much as possible with their current abilities.  And so, this summer and fall, we've traveled, and we still have a few more trips this year.  So far, we've been to Disneyland, Cecilia went to PA with my parents, North Carolina to visit our old neighbors, Disney World for Cecilia's Make A Wish trip, Lake McConaughy, and Chelan WA.  We've been so fortunate to have these trips and make memories in these places with amazing friends and family.  Still to come is a week long trip to the NIH in Bethesda MD for a study on Cecilia and Lilly, and finally Lilly's Make a Wish trip to Hawaii.  

 

 

House Progress

We are making great progress on the basement.  I am so ready for it to be finished.  The hope is that its done by early December, but we will see.  Drywall starts going in this week!  The basement will be a much needed playroom with a sensory gym for the girls.  The purpose of the sensory gym is to be able to provide them with a save environment to keep their bodies and minds active for as long as possible.  Active bodies and active minds are good for everyone, but especially when you are trying to fight a Batten war of mobility loss and dementia.  The hope is that we can also use this space to provide in home therapy for the girls.  Many people have asked how they could help- well here's a few tangible ways to help with the basement:

  • There will be finish work that needs done in the evenings (flooring, trim work, shelves to build).  We will probably schedule a day or two to install the sensory gym and move in to the space.  We are hoping to start the flooring and trim work the week of November 12, and be moving in and building the gym up on the weekend after Thanksgiving.  If you would like to lend a helping hand, please email us at raresisters.batten@gmail.com.

  • WANTED: Do you have stuffed animals that need a new home?  How about duvet covers that you are not using?  We will take them!  Stuffed animals, old comforters and duvet covers make great crash pads.  If you have these, and want to pass them off, please contact us at raresisters.batten@gmail.com.

  • We have also set up some wish lists for some things that we would like to have in the gym: 

Cecilia is beyond excited for this project to be finished.  She is already planning a Grand Opening party for the basement :) 

 

Shirts

Rare Sisters Shirts are still for sale in the shop.  We are so grateful to those who are helping us raise awareness and supporting us in this way.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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