Saturday, July 18, 2009


We've settled in since we arrived home. We're starting to get the hang of things (never mind the 3 hour shopping trip to Target and our experience in GNC listening to the 17 year old behind the counter tell me the Ketogenic diet sounded sketchy...anything that would recommend Saccarhin...a cancer causing poison...should be illegal according to him.) It took me 48 minutes tonight to prepare Kendall's formula and 2 25 calorie snacks for tomorrow. I'm sure it will get better and our next shopping trip won't involve my 8 year old checking labels as I read off the approved ingredients...or talking to strangers in the isles about where on earth to find liquid saccarhin. *by the way, we ended up getting approved 0 carb sweetener that is derived from a plant.

Kendall is eating. She loves the KetoCal and the "egg nog" heated into a custard. She also loves jello and cream and turkey, mayo, and cream. She loves them so much she cries when the 2 bites of the 25 calorie snacks are finished. I do believe it is time to replace one of the formula feeds with solids.

I mentioned before that I read "Blue Sky July." I savored every word of it. It was touching to me on so many levels and I didn't want it to end. I felt like a new world had been opened up to me when I finished it. I felt hopeful for Kendall and our future. I felt validated in all of my emotions the past 14 months. Things were definitely put into perspective for me once again.

Throughout the book she spoke of "patterning" quite a bit. I have not had a lot of time to research this (by the way, I don't think "googling" something counts as research!!! I think its helpful, but I also think people should be leery of reading things on the Internet that are not research based!)...but what I was able to read really got me thinking outside the box.

I have never really been an "alternative therapy" type of person. Until recently.

Our experience in the hospital and being grouped into a category really got to me. So, this "patterning" really spurred my interest. Up until now, I have kind of left Kendall's therapies to the experts. I trust their decisions...Don't get me wrong, we work with Kendall EVERY.SINGLE. DAY. at home. My mom has turned into the best PT! And Justin, Kamden and I work with Kendall every chance we get. Its just that, we're not professionals. We don't have the schooling or experience working with kids like Kendall! But I do have common sense. (most of the time!)

Patterning is based on the concept that a child should learn movements in the same order that a normally developing child would. Like, repeating the movements of crawling before walking, etc.

When I taught 3rd grade for 5 years at a school that was 90% economically disadvantaged, one of my main frustrations was we were expected to have children who couldn't read pass the stupid TAKS test. My lovely state of Texas and its "No Child Left Behind Act" pressured teachers to focus on the test instead of the child. Our wonderful politicians (TOTAL sarcasm) tend to be motivated by dollar signs, as do our text book companies. Leaving the teachers with their hands tied. One of my main factors in leaving the teaching profession was how emotionally draining this became. I often asked why we were focusing so much on the test when these kids couldn't even piece together words. Shouldn't we teach these children to crawl before we expected them to run??? Common sense, right? Shouldn't we put more money into early intervention for the schools that needed extra help instead of the schools who already had what they needed??? ugh.

So why then, do I have Kendall standing in a stander? Why am I not focusing more on the steps it takes to get her there naturally? I remember learning how to wake board. It took me a really long time to get the hang of it. My muscles were learning something new, but after repetition, it eventually came full circle and became second nature. It seems like common sense to me that "patterning" would be the way to go! Creating new pathways for her brain. Rewiring the areas with broken pathways. I get that some kids don't have families that will work with them every day, but in Kendall's case, we will. SO why is this considered "alternative therapy?"

I have not read the books from The Institutes. Things that sound "cultish" kinda scare me. This write up on Patterning also makes me question its validity. But I'm starting to think that it is my responsibility to gather all the information and find what is right for Kendall. Its up to me. Our team of therapists and Dr.'s are great, but they don't know her the way I do. At all. They see her MRI's and EEG's and think of things in statistics. Maybe I've been guilty of that too. Maybe I have just accepted the things they've told me...but not anymore. Kendall deserves more.

I'm not going to run out and throw away our standers, chairs, adaptive aides. I truly don't know how I would function without some of this stuff, but I do think I need to take a step back and get back to the basics. I will also be exploring new therapies and options. (and praying the seizures stop completely so therapy can have an opportunity to make a difference)

This will be a full time job...

But my kids are the MOST important thing in my life and I will do what it takes to make sure they have the best.


Jessica said...

Just when I think you can't get any more amazing....I read this post!! YOU are fabulous!

TwinsRock08 said...

Jocie, I'm glad you guys are home and doing well. I enjoyed reading this post as well. You are amazing!!! Hope to see yall soon.
And you and Kendall are always welcome over to play. L&C would love it. Have a good week. I'm open to run any day this next week.

Cjengo said...

what an eloquent read, thank you for sharing. I always learn so much from you, and your amazing amount of information. Oh and you don't even want to know what Mike said to tell the 17 year old..ha.

I love the stander!!! Was Kendall fitted for this? You know one thing I have never asked you is how long did it take for Kendall to get neck control? Jude is still so floppy.

I agree that we shouldn't just accept what they tell us, and press for more. Sometimes it seems so overwhelming though.

jocalyn said...

Kendall still does not have the greatest neck or head control. Some of it I blame on vision, and some tone...but it takes quite a few pictures to find one where she is looking up! She has the strength, she just needs to work on the endurance! Kendall has very very low tone. She's always been floppy! But today at church, I watched her turn her head sitting in her chair from the right to left again and again because she was interested in the sound and lights! Baby steps!

Cjengo said...

You always make me feel better, but I wish both our kids had head control :). We are free the next weekend except for Emily's smile box drop off at childrens. Maybe we could get together??? I would love for Mike, and your hubby to chat again.

Lorrie said...

Hey Jocie...
I'm just getting back in town and getting caught up on all things Briggs! It sounds like the hospital stay went well. I hope the diet works out for Kendall, it sounds like it just might. You're an amazing Mom and if there is something I've learned over the last 9 years...WE are our child's only advocate and you are absolutely right - you know Kendall better than any doctor. Do what you think is best because you never want to look back and say "what if"...I've done it too many times and Aidan has been the one that suffered because I didn't go with my instinct and instead trusted a doctor who I thought knew better than little ole me... And...don't even get me started on TAKS...
Anyway - you're amazing and you have such a great family and a great group of friends who are there for you. You are truly an inspiration to everyone. Have a good week.

Justin said...

Since when do you wakeboard?

jocalyn said...

Since when do you read my blog???

I did it in college and it took a really long time to learn, it was just an analogy...I guess I could have said riding a bike, but that seemed a little cliched.

Get back to work.

Reagan Leigh said...

We used Stevia too. Seemed to work well enough. I know what you mean about the institutes/patterning. I have read the book and a lot of it makes sense. Almost too much sense. Why isn't everyone following this? I think a lot of it is that the scientific research has never been done to back it up. I'm not sure why. But I do think some of it is definitely worth trying.

Caroline said...

I have that book too! Haven't read it yet- have another one on the go 'loving your special needs baby'. Of course, that's not hard to do, but it has some really inspirational stories in.

Kendall is very lucky to have such a wonderful Mummy

Love always

Anonymous said...

Standing helps preserve her musculo-skeletal system while her neurological system develops at its own pace.

Bones and muscles get weak fast if not used. My last post on that is titled "Bone Connections" - about 2 months ago.

There are reasons why everyone is not following the patterning protocol. The reasons are not walking around either. The research has been done, a while back.

You are an excellent Mom. No doubt you researched the keto diet before taking that on, and doing the same for patterning will lead you to a decision, too. Barbara

Edward said...

yea Jocie when did you wakeboard at Baylor and what water did you use? There are no beeches in Waco that I know of. Big Ed

Edward said...

Jocie, you bring great joy to Mom and me. You are so talanted and are on top of everything. Kendall and Kamden are very fortunate to have great parents like you and Justin, and blessed as well. WE KNOW THAT OUR LITTLE KENDALL is going to be the most amazing and wonderfull child that our loving God has ever made. She is special and so are you. I love you very much and will always be there for you. Keep up the good work, and keep your blog going. Love Mom and Dad.

jocalyn said...

Barbara, thanks for your comment. I will go back and read the post on "Bone Connections." I have learned so much from your posts! Keep 'em coming

And Dad...seriously?? You and Justin never comment and when you do all you have to talk about is my wake boarding? No, there were no BEACHES in Waco, but we had the Brazos river and we did wake board. A LOT. Ask Amber. You two need to leave me alone!!! Geeze.

jocalyn said...

awwweeee...I just read the other comment. So sweet! Thanks for figuring out how to comment. I know that was a pretty big step for ya! It only took 93 posts. I love you guys.

Jacqui said...

I think you are on the right track with the ketogenic diet. I have my fingers crossed that you can drop all the drugs.

As for patterning, it really depends on your beautiful girl and what she is willing to tolerate. We are just about to start (once the casts come off) a full on twelve months of hydrotherapy, swimming lessons, PT and feldenkreis. I'm hoping this combination will work for Moo. I think its about finding the right therapy for you and Kendall and sticking with it.

Hope you enjoy your holiday.