Thursday, March 25, 2010

Crunchy mama

Look mom, two hands!

Since the medical community hasn't really been able to help us much with Price, I have become sort of a "crunchy" mom seeking alternative treatments for him. My first stop was to a developmental eye doctor who was just wonderful, much more attentive and caring than our experience with the neuro-opthamologist at Texas Childrens. Price has some eye movement problems which I pretty much diagnosed myself and then sought out the opinion of doctors across the country. They agreed with me. Problem is, the eye condition is so rare that none of our doctors here have a clue about it AND it is supposedly benign so there's nothing that can be done, except wait. This is crazy but I have been talking to a mom of a son with the eye condition for awhile now, probably since Price was 8 or 9 months old. She started an informational website which was so informative and helpful to me. AND she and her husband and son appeared on Mystery Diagnosis not too long ago. Isn't that wild? Anyways, after the show aired I had two people call me and so sweetly tell me that they saw an episode of Mystery Diagnosis and the little boy looked and acted so similar to Price. I know that was hard for them to tell me, but it was actually such a confirmation. I was very appreciative that they cared so much to say something.

So, this eye condition (which is really more of a nervous system disorder) can cause developmental delays, ataxia, and a multitude of other symptoms some of which Price has and some that he doesn't. And I am hopeful because they seem to be getting better lately. Back to the crunchiness -
We went to see this developmental eye doctor who told me how intelligent she thought Price was and that we were most likely just dealing with delays. I wanted to cry...it encouraged me so! She wants to try putting him in some prism glasses a year from now. First a helmet, then glasses....at least he's cute! She also gave me the names of some alternative treatment providers. I did some research and thought, what the heck, I will give them a try. About 4 weeks ago we started seeing a chiropractor who specializes in cranial-sacral work. It's like a light pressure massage. We will see how he responds to treatment.

We also ventured out to a homeopathic doctor today. I have been doing my research on supplements that might be beneficial to Price and have spent time consulting my dear and wise friend Uldine, who is a health and nutrition expert. I also received a lot of input from another friend who is on a different but similar path with her daughter. I had developed a little regimen for him that was going well I thought, but I wanted to know if I could do more. Funny though that last night I was at the end of my rope with supplements. There is this particular B vitamin supplement that tastes so gross and stains everything. The only way to get these vitamins down Pricey is to hold open his mouth and shoot them down with a syringe. It's not pleasant. He gags, and chokes, and eventually spits some out. Last night, he spit some out all over our new rug. I cried and loudly just said, "I'm done Lord. I don't want to do this anymore."

And that's funny because today we got even more supplements to add to Price's routine. This doctor recommended a smoothie-like concoction, so we will see how that goes over. I think there are like 8 different supplements and we have to introduce them one by one. He also recommended that Price start on a gluten free diet which just made me cringe. About 2 years ago, a doctor recommended that Nathan do a gluten free diet and I threw a huge fit. I didn't want to cook special foods, have to shop at specialty grocery stores, and never go out to eat. How selfish I was. It turns out Nathan did not have the problems they thought he did, so he was able to return to a normal diet. I think maybe I was being prepared for this journey in advance as this time my attitude was much better.

So, here we are. Just praying and seeking and hopeful that we will start seeing some real progress with Price. Some days I get tired of praying the same thing over and over and wonder if the Lord even hears me anymore. My friend Ali sent me some encouragement about this subject just this morning and it was very timely. The Lord hears and he wants to hear and he will answer, just not necessarily in my timing. My grandma reiterated the same message to me the other day over email. So I will beg and plead and pour my heart out and anxiously wait to see how our prayers will be answered. And I know they will be answered.

7 comments:

Lindsay Wagner said...

you are SUCH a good mom...i want you to truly know that. i mean, REALLY know that. you are an amazing mom. your courage through this journey amazes me, and your dedication to price and price's best is inspiring. i don't even know the right words to encourage you, and i so desperately want them. but know that you are amazing and mr. pricey sure is lucky to have YOU as his mom.

Jason said...

I am praying with you! I just love that little guy to pieces.

Tabaitha Kaye said...

Praying with you. I'm so excited that the Lord is leading you and directing you. The path is not always easy, but it allows us to rely on God more and have faith that we might not have had we never been in this place in our lives. You are such an encouragement to me!

glenda said...

Kristen, You are such an inspiration to all! You will move heaven and earth for Price and though there are times when you grow tired and feel God is testing you, you somehow rise above it all and continue your fight for Price. Ellery and Price are so LUCKY and BLESSED to have you as a mom! Your strong faith carries you through this difficult time!!! I continue to pray for both you and Price!

Katie said...

Kristin,

I love how open and honest you are...both with being a mom and your doubts! Know that you have a huge circle of prayer warriors lifting up your struggles and sweet Price! I don't have the perfect words to calm you, but He does! Hold strong in your faith, He'll answer in his timing!

1 John 5:14-15
"This is the confidence we have in approaching God: that if we ask anything according to His will, he hears us. And if we know that he hears us- whatever we ask -we know that we have what we asked of him.

Praying,

Katie

Donlee and Amanda said...

I always do vitamins in the bathtub!! I learned after several stains that doing them at bath time is great, if they spit them all out, then you just wash them off & try again. I am always anxiously awaiting the Price updates.

Jacquelyn Colley said...

Praying for you and your entire family!! You are so correct in saying he is too cute and your unwavering faith is indeed inspiring, I know Carey and I don't have kids yet but I do pray that I am half the mommy you are! We love you!

newer older home