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.

Spring break recap

I was very determined to do something fun everyday of Spring Break last week. I really do enjoy having Ellery home with us and find myself a little bored when it's just Price and I. We need her constant conversation and entertainment I guess.

Monday Price had physical therapy and then we met Mariana and Audrey and lots of other new friends for lunch. It was a great lunch spot. All the moms sat outside and the kids could run around, play in the sand, and pet horses and other animals. Ellery is our animal lover and was so upset when we had to leave in order to get Price home for his nap. Her sadness didn't last long though as we drove threw Dairy Queen on the way home for blizzards. We were going to get back to the house in order to meet my friend Kathryn and her new baby, but Price woke up with a weird rash that morning and I decided we better not expose the newborn just in case.

I guess I probably shouldn't have taken him to lunch but then again, he isn't up running around and playing with all the kids. It turns out Price's rash is actually hives and he continued to have outbreaks all week. It was the weirdest thing....if something touched his skin he would break out and then it would disappear about 30 minutes later. I thought about taking him to the doctor but decided to just see what happened. I am pretty sure he has some sort of allergy but I am not too interested in taking him to an allergist to figure out what it is at this point. I am thinking maybe its pollen...have you seen all the green stuff laying around everywhere? It's everywhere at our house!

On Tuesday, the only day it rained all week, Ellery and I went to the rodeo. I had a babysitter come for Price and was excited about our "girl day". Ellery loved the rodeo again this year, minus the part where we got soaked making our trek back to the car. Because we didn't get to walk around outside and see more rodeo fun, we used the rest of our time to get a mani/pedi. I probably could have skipped the rodeo and taken her to the nail salon and she would have been perfectly happy. Too bad the very next day she was taking her nail polish off in the pool because a little bit had chipped off one nail.

Tuesday afternoon I could feel myself coming down with a cold and Wednesday morning it was all I could do to get out of bed. Nathan took the morning off from work to keep the kids and let me rest which was so nice. I had planned on taking the kids to a new bounce house place but that didn't happen. Unfortunately, I am only now starting to feel better so the rest of the week was kind of a bummer.

Thursday we did go hang out at the mall for awhile, rode a train, and searched for the Easter bunny with no success.

And on Friday we managed to get out of the house for awhile to hang out with Tiffany and her girls and see their new house. We let the kids play at Lupe's while Tiff and I caught up at dinner.



Price woke up with a fever and cold-like symptoms on Saturday so the rest of the weekend was spent inside, which was okay because I had loads of laundry to get done and the winter weather decided to re-visit us. I did manage to sneak out for a fun baby shower!

Posing (really posing) with the longhorn for daddy

And posing with the goats for Lulu

Waiting

Nathan said something a couple of days ago that really stuck with me. He said, "When did things get so heavy and serious?" He's one of those guys who is usually optimistic and positive and who enjoys laughing and being light-hearted more than serious. I thought to myself, ever since your sister was diagnosed with cancer and we started on this medical journey with our precious son. It's been a heavy season of life.

Waiting for this next round of test results for Price was not terribly hard at first. I know that Price is fearfully and wonderfully made and our main desire is for Price's life to glorify the Lord, no matter what. I haven't always felt so confident in saying this but I can honestly say it now. 100 percent, without a doubt. Before, I really wanted Price to glorify the Lord but I ALSO wanted MY will for him.

A couple days ago I had a complete breakdown. I had a weird message from the nurse at the genetics clinic that made me think that something was horribly wrong with my son. I got the message at 5:15 and of course, the office was closed the minute I tried to call back at 5:16. I sobbed to Nathan, I sobbed to my mom, and I sent a few pitiful texts to a good friend. After I got it all out of my system, I enjoyed the night with my family and slept in peace knowing that the morning would bring complete clarification and we'd be fine no matter what.

And guess what? These tests indicate that Price is fine. Completely normal. They didn't find a thing. For those of you who are still reading this depressing story and care to know, Price had an amino acids test, a Karo type, a few more metabolic disorder tests, and a complete chromosomal micro array that looks for every micro deletion/addition possible.

The genetics clinic wants to see us back in 6 months for a follow-up and more testing, but we are really feeling like we are done for now. This has been so rough on us all. Price is healthy and thriving. Yes, he has developmental delays, but he's a healthy little boy. We are just going to keep praying, praying for strength, progress, and complete healing.

I have more to write about all of this but for now we are thankful for the good news.

What she's been up to

First, there was Rodeo Day at school. I am not quite sure what was going on here as her daddy was taking these pictures. Maybe some pre-rodeo stretching and warm-up?

There is always lots of time spent in the backyard on the swing set or digging in the soil. We always have about 10 plastic baggies at any given time filled with rocks and leaves, or as she calls them "fossils".

And then there was her first time on roller skates. Our old neighbor friend gave them to her last year and she wanted to give them a try. She did pretty good, falling several times, but always getting right back up.

Updates

I have taken a long blogging break...but for good reason.

Nathan and I just got back from Beaver Creek, Colorado! We spent 5 days skiing and relaxing with good friends. It was a much needed get away without kids, but I missed them like crazy. Price actually cried when he saw me for the first time after being away. I think maybe he was giving me a hard time for leaving him. I don't think Ellery missed us one bit. She could have stayed with her Bebe/Pops/Lulu/Poppy for many more days!

Some have asked how Mr. Price is doing these days and he's as sweet as ever, but getting a bit of an attitude. He cries if you put him in his high chair without having his food ready-to-go. This boy likes to eat! He also will let me know very quickly if he's unhappy with where I set him down or if I leave the room. Sounds strange but we are welcoming all of this. I am so eager to know his likes/dislikes and what he is interested in. It's just been so hard to learn all these things because he cannot move like other kids his age and because he can't communicate with us like most kids his age. He will be starting occupational therapy soon which will be inconvenient but hopefully well worth it!

We met with a geneticist before leaving town last week and Price had lots of blood draws for the numerous tests they are running on him. I must say that this has become quite the norm for us these days. While it's hard not to worry about what these test results might bring and what that might mean for his future, I am actually doing quite well. I take comfort in the fact that the Lord has gone before us in all of this, knows his genetic make-up, and won't be surprised by the findings whether normal or abnormal. Of course, we are praying for normal and that we will look back one day on this wild ride and be amazed at how far our sweet boy has come.

LOVE

Ellery was invited to a wedding this past weekend! We grew up with the beautiful bride, Teresa, and her family. Her mom is so dear to me. She is such a prayer warrior for our Pricey and an encouragement to my mom. She was so sweet to include Ellery in the wedding.

So....Ellery and I went and had our nails done Saturday and my mom of course bought Ellery a new dress. She sat quietly through the ceremony and later had a zillion questions for us about all that went on. My sister was a bridesmaid and as she walked down the aisle, Ellery whispered, "I love Paige, I love Paige."

We arrived at the princess ball as Ellery described it, and she really did have a ball. She was in awe of the beautiful bride and giggled each time Teresa would talk to her or smile at her. Ellery also had some pretty good moves on the dance floor. She was not bashful at all and seemed to love the spotlight. I have some video on my phone that I will try and upload.

Congratulations Teresa and Bryan!

Yum

Look who's attemping to eat dirt dessert with a spoon! My friend Lindsey dropped some off at our front door last week (isn't that just the nicest thing?) and Pricey went to town on it.

I think we've got another dessert lover!