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Summer and Back to School Update

August 16, 2019

Summer has come to a close.  I am extremely thankful for this.  Summer is hard around here.  The girls thrive on routine, and the fighting and messes seem to be never-ending in the summer.  The thing with my Batten girls is that its not your typical sibling fighting- it is usually more aggressive and dangerous.  School is good for all of us.  It gives us a break from each other, provides structure and routine, and creates space for others to nurture my girls, and for me to nurture them better when they are home.  The girls really do enjoy being in school.  They have a great group of classmates, and a terrific team of teachers and support staff.  They continue to enjoy horseback riding therapy, and Physical Therapy, occupational Therapy, and Speech Therapy come to the house 3 days a week to work with them.  

 

We also had a doctors appointments this summer for both girls.  Psychiatry for both, and medication changes/additions for both.  Trying to manage their anxiety and behavior is challenging, especially since they are growing so much.  Hormones also play a big factor here, and Cecilia's are starting to increase quickly.  We've hit a new milestone of having AM/PM pill cases for the girls.

 

Cecilia had her tonsils out in July.  She was a champ!  Her pain tolerance is almost too high.  It was hard to keep her down.  She did enjoy her endless amounts of ice cream- even at 3:00 in the morning.  Her tonsils were huge, and were causing some sleep issues.  We think she is sleeping better, but she is still waking early in the morning- usually between 4:30-5:30.  This is common for Batten kids.  This means that there are days on end where I live on coffee.

 

Our summer was ok.  Not great, not bad, but ok.  We traveled twice- one trip was really rough, and one was really great.  It was an eye opener as to how much Cecilia has changed in just a few months.  We will be evaluating which trips are reasonable for us to take in the future with a much different scope.  

 

A huge blessing this summer was that my mom was offered a teaching job close to us, and my parents are living with us now.  They are our closest neighbors ;)   Their house is almost complete (basement apartment, which is huge and beautiful!).  It is surreal at times to have this last piece of the puzzle for how this will work falling into place.  We are so incredibly grateful to have their support and sacrifice.  The girls are thrilled to have Mamma and Pops around.

 

Jon and I attended the BDSRA Family Conference in July.  This is a Batten Conference held yearly for all types of Batten.  It provides a place to connect with other Batten Families, learn about the research being done, and discover resources available to us.  It was wonderful to hug other parents and love on some other Batten kids.  We also learned a ton, and are grateful to the presenters and siblings of Batten kids that shared their stories.  One amazing resource that we received was the first ever published text book on Juvenile Batten Disease.  For the curious minds- you can download the book here:  https://www.statped.no/laringsressurs/syn/juvenile-neuronal-ceroid-lipofuscinosis-childhood-dementia-and-education2/

 

The big question- How are the girls?  They're ok.  We are seeing slides and decline for both girls.  It was interesting to see at the BDSRA Conference that a researcher documented a two year regression pattern in Batten kids.  We have said this for a while, and they are both starting down a new regression slope.  Our main symptoms that we are trying to manage/cope with/treat are: behavior, anxiety, vision, speech, memory, and the newest is muscle rigidity.  Cecilia in particular has lost a lot of flexibility in her leg muscles.  Also, her posture has been in decline for a while now, and she has actually been fitted for a car seat because she can not hold her self up in the car for more than about 15 minutes.  We should receive the car seat in the next few weeks.  

 

This particular change causes a lot of logistical issues for us as a family.  Cecilia has been riding in the front seat of the minivan for about a year now because it has not been safe for her to be near her sisters in the car- she can't control herself and becomes agitated easily and will hurt her sisters.  Separation is the best for this problem.  With the addition of the car seat, she will no longer be able to ride in the front seat, and we now are out of space in the back.  We're going from 3 in car seats, back to 4 in car seats.  We are looking into a larger vehicle, but we are being mindful of what the future holds- wheelchairs.  Factoring all of these variables, we will most likely be purchasing a 12 passenger Ford Transit van in the early new year.  We wanted to get a low roof 10 passenger van, but after researching wheelchair accessibility, we learned we need to get at least a 12 passenger with the mid roof.  The bigger van means a bigger price tag.  We will deal with that when we get there...  Just another thing we never thought we would be thinking about.

 

Cecilia turned 10 at the end of July.  This brought on a whole bunch of emotions for Jon and I. I wrote this reflection on her birthday... I remember like it was last week sitting in the parking lot at King Soopers after purchasing a “1” candle for Ceclia’s first birthday, and crying because my baby was was one. Those were tears of sadness for the year gone too quick, and also tears of hope and anticipation of what her great future would hold. Today, my baby is 10 years old. If I’m being honest, I’ve cried a lot this week. These tears have been tears of deep sadness, and great pain. I am grieving the hopeful anticipation that I had 9 years ago. The fact that she is 10 and has this awful disease means that most likely her life is already half over. Grim. Yes, I know. I really do. It is so not fair. This milestone birthday should be a time of great celebration (which we will have). We should be bracing for the fun teenage years and celebrating her independence. Instead, this week, we have noticed regression in her behavior, speech, range of motion, ability to complete her ADL’s, and her cognitive ability. We had to introduce her little sisters to the harsh reality of keeping secrets from Cecilia so that we don’t upset her more than needed. I hate that she is 10. I hate that it is a struggle to find the joy around her. It is there, and we do find it, but it is hard.