Saturday, August 1, 2009

We're Alive!

Thought I'd better do a quick post, so everyone knows we're still alive. This week has been crazy busy with Dr.'s appointments, therapy, and work.

Kendall slipped out of Ketosis twice. She also had blood in her urine. These are two not so good things when it comes to the Ketogenic Diet. So we've been monitoring her closely. Her blood sugar has been fine this whole time though. And her alertness and seizure decrease have made this whole process totally worth it. The Neurologist said we shouldn't see results for about 2 months, but we are. We really are. And it's only been 3 weeks. We've started to ween the Vigabatrin. It's a pretty slow ween, so it will probably take about two months total. Leaving only Keppra and the diet remaining. I pray the seizures will be gone and we can just stay on the diet.

This diet has not gotten any easier. We've been introducing more solid foods and less formula feeds. It is so time consuming and tedious. I can see how people want to throw in the towel early. But, we won't. Hopefully this will be our answer and we can get her off some medications.

At therapy on Wednesday she had the best session she's ever had. She actually sat unassisted for 20 seconds. Her PT sees a huge difference since we've started the diet...which is encouraging.

I am finally taking some way overdue unpaid Family Medical Leave Act. This diet finally pushed my stress level to a breaking point, and Justin and I came to the decision that it just isn't worth it. Its not humanly possible to maintain a full time job and handle everything at home too. Our family is awesome, but its too much to ask to have them prepare all the food and administer medication, and monitor Ketones and Blood Sugar. So I've been doing all that and trying to work! I'm taking 2 weeks this month, and I haven't made a decision about next month yet. I get 12 weeks total (unpaid!!!) So, we'll see. During this time I will be interviewing Nannies aka "Special Needs Respite Care Workers" (any suggestions...) and working to add nursing hours through our insurance. A little help during the day for my mom until November will be a good thing. She is having her 5th hip replacement, then starting Interferon soon after that. We have been so blessed to have her care for Kendall for so long! Finding someone to stay with Kendall during the week that is not family really frightens me, but I'm sure we'll figure it out. If not, I'll be taking a permanent FMLA...

In the mean time, my incredible sister decided our family needs a vacation. SO, part of that FMLA will be spent caring for Kendall in Destin, Fl! We love it there. It was kind of a last minute deal, but we will be there for 10 days. I'm sure it won't be easy packing all Kendall's stuff, medical records, medication, wheel chair, car seat, and putting that restless baby on a plane...but the margarita's on the beach will be so worth it! We leave in a week! Yahoo!


Cjengo said...

I feel really bad for texting and emailing :(. I am sorry I was demanding, I can be that way at times. I was just worried about you guys. You have helped us so much, and I feel drawn to your family. I am glad you are taking time to relax. There are days I feel like I am going to explode from all the stress, so I understand. Enjoy your vacation, you so deserve it!

Travel Wisdom - Tips, Tastes & Tales from Around the World said...

Call me if you have any problems or need anything while in Destin. I am only minutes away.
Lynne Christen

Anonymous said...

Wow that is mostly good news ('cept of course the no pay leave). Still, mental health and family relationships are priceless.

So glad to hear the diet is effective for reducing her seizures and increasing her ability to learn and move.

A vacation is the icing on the (no carb of course) cake!

Looking forward to meeting you on Monday! Barbara

Lorrie said...

Yay! A nice relaxing family vacation is good for everyone! Have fun & take lots of pictures! We'll get that play date set up when y'all get back...Miss you guys :)