Batten Disease – A hard few days

Batten Disease – A hard few days

Posted by in Batten Disease, Life

This picture was taken a few months ago.  I was daydreaming of happier days.

So this morning I woke up and I now know what it means when someone would say “my back is out.”  The center portion of my back has died the black death.

Rachel has been very difficult the past couple of days thanks to Batten Disease.  Constantly yelling, needing, demanding you come to her *NOW* and yesterday and Friday evening she was requesting to go to the bathroom several times.  Usually she only goes to the bathroom about 4 times a day (sometimes less).  Her walking is terrible and I am literally holding her up to make it the ten steps to the toilet.

I’m at the point where I’m ready for her to start using her absorbent briefs.  I think that would be safer for her… and apparently my back.  There was no big event yesterday where I “pulled something” – but I woke up in excruciating pain that is not going away.

Rachel was so upset last night.  She is still asleep now.  Friday and Saturday night she didn’t go to bed until midnight.  Saturday night she had her meds a 6:15.  I need to get some rescue medication for nights when she is extremely emotional, sad, angry, ADD, and all over the place.  :/

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October 10th, 2014

October 10th, 2014

Posted by in Batten Disease, Life

Today is like any other day.  Well, today is London’s 9th birthday and I let Rachel stay home today to hang out with all of us and simply relax.  I can’t believe my children are 14, 10, 9 and 8.  Seems like a happy day, which it is, but it is also a very sad day for me.

This sadness I keep inside because my children don’t need to have a sad mother.    I have been avoiding this for a long time but today…

Today I took delivery on Rachel’s hospital bed.

She’s had a hospital bed at my Mom’s house and really quite enjoyed it.  Using the controllers to move her head and legs up and down.

I don’t see this bed as a fun, good time.  I see this  bed as death coming closer to my door.

I hate this disease. I hate this bed.

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Surreal to have a child’s stuffed animals on a hospital bed in OUR home.  I don’t like it.

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She is all happy because I made her ramen for lunch.  Ramen slides down her throat which has an epiglottis that likes to forget to close from time to time.

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Rachel listening to Disney Junior.

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Please someone wake us up from this nightmare.  All of the parents of dying kids are living in a nightmare.  Nightmares are for night and you’re supposed to wake up from them in the morning being grateful that it wasn’t real.

Except this is real.

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Rachel riding a bike!

Rachel riding a bike!

Posted by in Life

Today at her special needs school in Lakewood, Colorado, Rachel participated in bike day. Unable to see and barely able to walk with tremendous assistance, they brought adaptive bicycle equipment for her to enjoy.

She has been on the patch for 2 days which will hopefully decrease her saliva production because her terrible choking cough has been getting worse as saliva creeps its way past her faulty epiglottis. She also had a grand mal seizure tonight at respite.

Here are two pictures her principal emailed me tonight:

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Choking, Saliva and a broken eliglottis

Posted by in Batten Disease

scopolamineDespite passing her swallow study in May, Rachel’s body continues to fail her because of this wretched disease.  Over the last 3-4 months I have noticed that she has been coughing a lot and after researching the effect of neurological disease on swallowing, observing Rachel and watching this become a frequent occurrence I decided to take action.

The hope by starting Rachel on Scopolamine she will decrease how much saliva she is producing and will choke less.  This medication is administered through the skin, kind of like a motion sickness dot behind the ear.

Today is day 2 and I haven’t seen much (if any of an improvement) but hopefully I’ll see something by the weekend.

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Cartman the Wheelchair Van

Cartman the Wheelchair Van

Posted by in Batten Disease, Life

Thank you so much to all of the GoFundMe donations toward Rachel’s van. I found a van only a few minutes away with low mileage and a great price. I am still working on raising a bit more money to purchase a fold up hoyer lift. Meet Cartman:

 

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A GoFundMe Campaign for Rachel

Posted by in Life

summer_2014So I finally did it.  I have been thinking about it and after it was suggested again and again (and again), I created an online, “crown funding” campaign to help me raise the money I need to trade in our older Navigator and get a wheelchair van that Rachel can ride in… in her wheelchair. My pride, as a person, has vanished but I know it was the right thing to do.  Sometimes I hate doing the right thing. Over $1000.00 towards the van in just a few hours.  Thank you for sharing and donating. Please continue to share the link because these vans, unless you want a retired airport shuttle bus with 250,000 miles, are expensive! On behalf of my Rachel who is losing her walking legs faster than I imagined, and my other 3 kids who still like to go places like NORMAL kids… thank you.  And thank you from me. SEE RACHEL’S VAN CAMPAIGN

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Surprise

Surprise

Posted by in Batten Disease, Kat, Life, Rachel

I spent a lot of time in the car yesterday driving. Driving to see the kids new school (which is on the other side of Denver) driving Rachel to respite (and back. Twice.) and running a bunch of errands.

When I got home from running my errands I found that my friend’s husband, who will probably kick my ass for not referring to him as my friend (which he totally is but we don’t admit it, or hug lol), had built Rachel this:

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My parents, with the help of my brother, built something similar for Rachel back in Massachusetts so Rachel could enter my parents home. I never expressed my thanks because it’s too painful to realize that that is her future. Yes it is inevitable that she is completely losing the ability to walk but sometimes I just can’t face it.

So for what its worth: Thank you

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A long, hard, look in the mirror.

Posted by in Batten Disease, Life, Rachel

So my name is Kat (Kate) and I have four children. My oldest is Rachel. She is 14, blind, developmentally disabled and can’t eat, toilet, bathe or do very much on her own. She is unable to maintain her temperature on her own and is having a harder time walking and will yell multiple times throughout the day until you figure out what she wants to get her needs met.

To say she is a handful, is the understatement of the fucking century.

She was healthy. Perfect. Sweet. Sighted, Never a brilliant child but certainly normal for her age (well, medically speaking, she was “within normal limits”).

She and I have been on this journey together for 14 years. It has been a rough road. When I was pregnant with her I lost my shit, mentally, and although I don’t often admit this, I was induced 6 weeks early because I didn’t care whether either or she or I lived…. or died.

Very dark days back in 2000.

When she started to show signs that there might be something wrong I had three mains sources of guilt that I hated myself for. Daily.

1. I lightly smoked when I was pregnant with her.

2. Her biological father made zero effort to be in her life either emotionally or financially (he has been consistent like that for nearly the entirety of her life. Apparently he thought they would have a relationship when she grew up. He is an idiot who went on to have two beautiful and perfectly healthy daughters).

3. I remarried and had 3 more children “back to back” and for a while chalked up her difficulties to some kind of rebellion to her younger siblings.

None of those three things actually matter. It took me a long time to get through those. July 2009 I found out she had Juvenile Batten Disease and was dying.

The whole process has sucked for her. She has lost so much, we have lost our normal lives. She is losing her ability to walk and talk and has a very hard time with bathing and toileting. Both activities she and I dread everyday. Because of accidents and period issues she has gone from underwear to wearing adult pull-ups.

I see other parents with children who have the same disease and I compare. I never compare with the parents who have infantile or late infantile batten disease because they truly are very different diseases that have their own set of problems.

I see other parents who pray for a miracle cure and I steer clear of them because I know that the miracle isn’t coming.

I see other parents who will keep their child alive for as long as they possibly can and while I support their level of intervention, I know that isn’t what I want for my daughter.

I see my face when I am helping her into the bathroom, I feel my arms ripping to safely lower her nearing 200 pound body into the bath tub. I feel my frustration level rise when I have to hear her yell yet again because she is upset.

She hates being bathed very much like a cat does. The getting wet, the getting in and out of the bath, the feeling cold while she is dressed, the hair brushing. I could write a whole paragraph on how much she hates having her teeth brushed. I don’t blame her (close your eyes and have someone else brush your teeth just once) but it has to be done even though she and I would rather skip it.

I see the other parents of Batten children who have the same form as Rachel and I feel like the other kids are happier. Rachel has been consistently unhappy for a long time. She loves my mother back in Boston when they spend time together and she has moments of happiness and giggling but for the most part she is either yelling or unhappy. I can’t imagine what it is like to rely on another person to do everything. To eat, to pee, to watch a tv show, to be washed. But I look back and think of her time with her teacher of the blind, Anneliese. She loved her time with Anneliese. I want the Rachel that appeared when she and Anneliese worked together to bake, to craft and to make music.

I want a happier daughter because I know that will lead to a happier Mom and a happier life. I have employed an external respite facility to have her for a few hours twice a week and she starts school next week.

Now I have to look inside myself, inside my tired body and figure out what I can change to make this happier Rachel happen. I’m open to suggestions because if I can figure this out it will change our lives in so many ways. I know most teenage daughters hate their Moms…. but Rachel, mentally, isn’t a teenager and she certainly didn’t go through puberty and exhibit the “NASTY” that I may have been seeing in my younger daughter entering into “the change.” (Not naming any names. Right, Julie?)

I also need to teach my younger children to have more patience for their sister…. and I must lead by positive example. This is the hardest thing I will ever, ever go through. This is the hardest thing they will go through. Oh hell. I hope this is the hardest thing my other, unaffected children will ever go through. I can’t even think about that.

Breathe.

Rachel. Happy.

Rachel. Happy.

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Throw back Thursday

Posted by in Batten Disease, Life, Rachel

Taken August 2007. I miss this. This girl is still in my daughter but the disease is taking over. I took Rachel to see a primary care doctor here in Denver and she is willing to treat Rachel both as a person and a person with a neurological disorder. This is a big weight off of my shoulders. As she is still having breakthrough bleeding despite the pill and extra estrogen I decided to try her on the depo shot and so far so good. She weighed 186 at the doctor and I am still getting her in and out of the bath with minimal help from her. As long as I can physically care for her I am keeping her endlessly chatty, yelling, hungry, sometimes irritable self at home (which is still an airstream – so cool).

I hate what this disease is doing. I absolutely hate it. Taking her abilities and making it hard to do things as a single-parent family. I won’t give up but unfortunately, Batten Disease doesn’t give up, either. My arms hurt from my muscles ripping to grow larger as her muscles give out more and more each week. Being built like a brick shit house has its advantages that I never dreamed of.

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Spring Creek, Colorado 7/6/2014

Posted by in Life

Rachel was supposed to come to the gun range with me back in Boston several months ago, but the day I had planned to take her she had a seizure. Yesterday we went up to Spring Creek which is just outside of Idaho Springs in Colorado. With the help of multiple, legal gun owners, Rachel was given the opportunity to handle an unloaded rifle and with assistance she was able to shoot it. She loved it! She held it, I balanced it and aimed while she pulled the trigger. Very cool day.  There are more pictures of this day on my personal blog www.katwasabi.com

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