As told by Kat

I forgot to update

Kat — Fri, 05 Mar 2010 14:35:46 +0000

Rachel did not have the surgery yesterday, I cancelled it at the last minute. I couldn’t get over how terrifying the post-operative clean out appointments would be for her. I tried very hard to get her a Valium type medication from both the ENT and our Primary Care but no one felt comfortable prescribing that for her because they are respiratory suppressants.

I am going to push harder for her to use saline and maybe try to pin her down and use a neti pot on her. Increase the humidity in her room and possible get her a hospital type bed so she can sleep reclined. I’m also going to see if I can get our primary care Dr. to prescribe a steroid nasal spray to try and decrease her inflammation that way.

I have no doubt that the end result of the surgery would have improved her breathing but I couldn’t get past how terrified she would be every time I took her back for another “clean-out.”

I feel good about my decision.

My brother comes out to visit next week…. better get the lobster order ready.

I promise a “non Rachel & Batten disease” entry later today.

Depressed

Kat — Fri, 05 Mar 2010 02:48:47 +0000

Rachel seems to be going into a depression. Who wouldn’t be depressed, losing your vision, losing your mind.

I’m looking at old pictures of her, seeing that smile, trying to remember what the BEFORE was like.

This just can’t be real.

Well

Kat — Wed, 03 Mar 2010 03:11:35 +0000

I pretty much feel dead inside tonight and I thought I’d be nice and share it all with everyone who reads my blog. John went last week and got tested to make sure he isn’t a carrier of Batten Disease. Those results should be back in another week or 2.

I’m terrified, literally terrified that he will come back as a carrier for JNCL. Its really unlikely, but I have heard of this happening before in a conversation with another Batten Parent who got their diagnosis some years before we did.

My healthy other 3 children can sometimes be what get me out of bed in the morning, knowing that they have this future I must look forward to. I can’t imagine what it is like for the other parents that have multiple children affected. Please don’t ever let me find out what that is like.

I know my mind is getting the best of me tonight. I’m going to bed.

Oh and Rachel is having sinus surgery on Thursday. I haven’t told her. It is going to be hell. A more acutely experienced hell than normal. I’d like to add some curse words at this time but I don’t want to lose my most regular commenter (my Mom). So assume I said them so I can temporarily feel better.

‘Nite

Haven’t been blogging much

Kat — Mon, 22 Feb 2010 02:33:37 +0000

Today we had a BBQ at our place with a couple of families. Last night we had 3 kiddos sleep over. Its hard to see Rachel feel left out because of the symptoms of her disease or how kids, to know fault of their own, want to get away from her. I have to find some way to continue to have playdates with other children and take Rachel under my wing so she can be the big sister. She definitely does much better interacting with the adults she meets, probably because they are more understanding. I don’t know. I’m trying to be a good mother to my normal children, sort out this disease in my head and be a good mom to Rachel and protect her from further pain in her life. This is so complicated and sad and I just try and block out the “sad” as much as possible so I can work through the “life” and the “complicated” as fast as my mind will process.

We had a good weekend. The kids loved having friends over and I loved having the cake John bought. I ate way too much of it but I really don’t give a shit. Cake washed down my feelings, kept a smile on Rachel, Julie, London and Boston’s Mommy’s face. And sometimes all they need to see is their Mommy smiling and the world will be okay.

My tooth

Kat — Sat, 20 Feb 2010 16:10:36 +0000

I spent the best part of the last 10 days in increasing agony because of what I thought was an infected tooth. The tooth continued to get worse and worse despite the antibiotics I was taking. My dentist tried on two occasions to numb the tooth and had no luck. On Thursday I was in very rough shape, I was having problems sleeping and by the time I saw the endodontist I was shaking, vomiting and in so much pain I thought I could easily (and kind of happily) die! The only thing that helped was swishing cold water on the right side of my mouth.

Turns out my regular dentist and I thought it was THE WRONG TOOTH. This Endodontist was amazing. Numbed me up once we figured out that it was a rear molar (#2) and then did a fantastic root canal (which I fell asleep during 3 times).

My tooth is fixed.

I am in no pain.

I have my life back and my kids have their Mom back. Yay!

Me. In a Bar.

Kat — Tue, 16 Feb 2010 13:24:19 +0000

I pulled this off of Barefoot Bob’s facebook page. That’s my brother and his girlfriend, Andrea.

www.barefootbobshull.com

I

Kat — Fri, 12 Feb 2010 04:57:06 +0000

I am working on accepting that some children’t won’t grow up and live happily ever after. It is a concept that I live with and I struggle with every single day.

My children don’t see the struggle. This evening for dinner they had their choice of Mommy’s homemade chili or an unlimited supply of cupcakes. 3 / 4 chose cupcakes and my Julie chose both.

Who doesn’t love cupcakes? (Answer: No one I care to know).

Some kids don’t have a “happily ever after.” They just don’t.

Monday Mawn-in

Kat — Mon, 08 Feb 2010 14:33:51 +0000

We had a good weekend. Friday I took Julie to Childrens and we got the “all clear” for her heart murmur! I wasn’t worried about it because there are countless people out there walking around with benign murmurs but it was really nice to hear good news.

Friday night Rachel and Boston had a sleepover at Granny’s because Boston is POTTY TRAINED! We promised him a sleepover as a reward and he had THE BEST time. I took advantage of being “half off” from kid duty and took Julie and London to dinner at Barefoot Bobs Friday night and then to the dollar store on Saturday. We managed a playdate and met a HUGE dog called MayDay and ran some errands.

Sunday I took John and the kiddos to the MFA and everyone had a good time. Karen, our tour guide, gave us gloves so we could TOUCH some of the exhibits. AMAZING! Even Boston had a good time.

Friday

Kat — Fri, 05 Feb 2010 11:12:01 +0000

Today I am taking Julie to Children’s Hospital to have a recently discovered heart murmur checked out by a cardiologist.

Julie has spent the last week telling everyone she knows and then immediately following it up with “don’t worry, I’m not worried.”

She is such a good girl. I’m looking forward to having a few hours alone with her. Will update later.

Nightmare

Kat — Wed, 03 Feb 2010 04:27:52 +0000

I refuse to spend my time with her overcome with the overwhelming feelings of living a nightmare.

But we are.

Living a nightmare.

This is so unfair.

She barely got started living.

The nausea / nightmare feeling hasn’t gone away since July and it never, ever will.

EVER