Sunday, January 30, 2011

E is for entertainment

...and there is lots of it with this E around.



Tuesday, January 25, 2011

Clay

Street had his parent commitment this past Sunday at our church. I couldn't wait to see what they would come up with for the meaning of his name, and as I expected they used the meaning of his middle name "Michael". It means "like unto the Lord". I like to think that Street's name means light. For some reason I am always thinking about him being a light unto this world and rocking him to sleep with "This little light of mine." He's definitely a light in our lives!

He looked so handsome in his little sweater.


Last week we saw a geneticist at Texas Children's Hospital and we really liked her. She actually showed some compassion and general interest in Price. Of course, her opinions on what Price might have were just devastating. They are degenerative conditions, most with a very shortened life-span. Nathan and I listened, I asked a ton of questions, and she told us she would talk to an expert radiologist about the findings on Price's MRI and get back to us. We left there calm and discussed what she had said on our car ride home. No one should ever have to discuss the possibility of losing a child to some devastating disease. How humbled we are. We just prayed and once again offered up our son's life to the Lord. His will, His plan, His perfection.

We had an email from the geneticist yesterday saying that the radiologist does NOT think Price has a leukodystrophy (a degenerative disorder that destroys the myelin in the brain). Basically, everything the geneticist had offered as a possibility was ruled out by this radiologist and she was unsure of what was causing the changes in Price's brain. (They are very subtle changes but still changes.) I finished reading her email and thanked the Lord and laughed. Yes, I laughed. Laughed because of course they do not know what's going on with Price. Never has one thing a doctor said to us been right. Not once.

I was reading my devotional today and it discusses the verse, "Like clay in the hand of the potter, so are you in my hand." (Jeremiah 18:6). It talks about how we are involved in a life-long art project. We want our lives to turn out the best possible way for us and we are diligent craftsmen. We want the perfect family, the perfect job, etc. However, there is a craftsman more skilled than us. If we would trust Him to shape us into something more beautiful, He would. He has a grander vision of beauty than we do. The work of the Potter is not a comfortable process most of the time, but the finished product is glorious. We must trust Him completely because there is nothing more beautiful than His artwork. {Worship the King by Chris Tiegreen}

We are trusting!

Sunday, January 23, 2011

Conversation

Ellery, Street, and I were in the car after church and we had a little conversation that went like this.

Ellery: "Mom, did you know that Jesus healed a blind man?"

Mom: "Yes, he did. Isn't that amazing? Did y'all talk about that during Sunday school today?"

Ellery: "Yes. But mom, did you know that he still does this today? He still can heal people that like can't see or walk."

Mom: "You are right. He still can do this today."

Ellery: "Like Pricey, mom. He can see but he can't walk or talk. Mom, the Lord knows when he is going to heal Pricey. He KNOWS momma."

Mom: (with tears starting to form) "Yes. Did y'all talk about Price during Sunday school?"

Ellery: "No we didn't. I just know that the Lord knows when he is going to heal Price."

Wednesday, January 19, 2011

Strengths

I am loving our new blog design. I tried forever to think of a more creative title but failed. Most of what I came up with just seemed like I was trying to hard. Oh well.

I have a fun story from therapy today. Price was with his occupational therapist and there was another little boy working with another occupational therapist in the same room. This little boy is about the same age as Price and the same size. He is just darling. This boy has autism and according to his mom, does not enjoy playing with other children and rarely makes eye contact. Physically, this little guy does everything a "normal" 2 year old does...walks, runs, climbs, etc. Well, turns out that he is really taking a liking to our Price man. Price's therapist, Carole, said that the two boys played in the ball pit and seemed to really enjoy one another's company. Price loves other kids and is a very sociable little guy but benefited greatly from watching this boy move, use a hammer, climb out of the ball pit, you name it. And this sweet boy with autism benefited from the social interaction. His strengths are Price's weaknesses and Price's strengths are his weaknesses. Even cooler, Carole said the little boy stared Price right in the eyes and waved goodbye to him when his session was over.

I just love this story and even more so love how people are drawn to Price. I also love hearing about Price's strengths because there are so many. Sometimes I tend to hone in on the weaknesses and forget about all the things he does so well.

Thursday, January 13, 2011

Our suffering, our joy

I have found myself saying that Price is our suffering and our joy. And what a joy he is!

We have scheduled quite a few doctor visits in the upcoming months. A geneticist next week, a neurologist at Memorial Hermann the beginning of February, and then the Duke visit at the end of February. The people at Duke have been so accommodating. I have researched all the doctors we will be seeing and they sound fabulous. Of course, no one really wants to be seeing the head of rare diseases and neurodevelopmental disorders.


We are also looking into the possibility of school for Price next fall. At first, I was completely opposed to the idea. I wanted him at home as long as possible and therapy everyday is our new normal that we have settled into quite well. But, I am starting to wonder if a special needs school might be a good fit for him. Unless the Lord does a miracle, he won't be attending a "normal" preschool and I am finally okay with this. I have accepted it and it's okay. I no longer break down in tears at the thought. Nathan and I are going to tour a few places and do our research. Being a part of the special needs world is not something I ever imagined, but this world has blessed me beyond measure. The Lord keeps putting in my path other moms who are on a similar journey, and I instantly can relate and love them.

Our journey with Pricey is definitely full of suffering and sadness, but it is also full of so much joy and blessing.

"Consider it a sheer gift, my friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so that you become mature and well-developed, not deficient in any way." James 1:2-4 (The Message)

Tuesday, January 11, 2011

From the mouth of E

I loved this post by my friend Amanda and loved reading her son's responses, so I decided to interview Ellery with the same questions. Here it goes.

What does mommy always say to you?
Ellery, come downstairs.

What makes mommy happy?
When I give you something

What makes mommy sad?
When I am mean

How does mommy make you laugh?
by being funny

What was mommy like as a child?
happy child

How old is mommy?
I can't remember.

How tall is mommy?
a million size

What is mommy's favorite thing to do?
be with me

What does mommy do when you are not around?
boring stuff, like the grocery store

If mommy becomes famous, what will it be for?
from me

What is mommy good at?
taking care of babies and cooking

What is mommy not good at?
making fires

What does mommy do for her job?
take care of babies

What is mommy's favorite food?
salad

When are you proud of mommy?
when you clean up my playroom

If mommy was a cartoon character, who would she be?
daisy duck

What do you and mommy do together?
play and have fun and all that stuff

How are you and mommy the same?
both have brown hair

How are you and mommy different?
your teeth are bigger

How do you know that mommy loves you?
because you love me so much, because you hug me


Sunday, January 9, 2011

Street is 3 months!




Time is flying. Streeter is 3 months old and mama is falling hard for this little one.

At 3 months...

Street rolls from front to back, although it's not everytime we put him on his stomach. Sometimes he just tires out and lays his head down in defeat.

Has a grunt-like laugh and is extremely ticklish. He loves our little game "Walkie mouse, walkie mouse, walk right into Streetie's house", which goes back to Nanny.


Has the best posture! It's actually kind of weird but he sits up so straight.

Sucks on his lower lip and his hands all the time.

Has good aim when it comes to batting at toys.

Is still our serious dude with a lot of gummy smiles mixed in.


Loves to be covered in blankets and play with them in his hands. Another lovey lover I think!

Loves to be held and has a maximum "put-down-in-the-bouncer" time of approximately 30 minutes.

Still likes to cuddle with one hand in my shirt.

Is not sleeping much different than at 2 months

And still rages. Ask anyone who was at church this morning.

Friday, January 7, 2011

Keep on keeping on

This week was full of action. Monday Price and I were in a little accident. A lady pulled out from her parallel parking spot as I was driving down the road we take home from therapy. No one was hurt, but it has been a nuisance. She does not think it was her fault when clearly the pictures say otherwise. I have given so many statements to insurance people and they make me nervous every time.

Sometimes I just can't really believe that all this "stuff" with Price is happening. That one day we are going to wake up and have a "normal" 2 year-old doing all the "normal" 2 year-old things. We received some good news from his neurologist regarding some specific, devastating degenerative disease testing. It was all negative. This is where it gets hard though. Of course we really don't want these results to come back positive, but then we are back at square one so to speak. Seeing doctors, testing, waiting...it is just a new normal that I don't really like.

Nathan and I had a long discussion about how we are not ready to give up on an answer. We know that there is a huge possibility we will never know why Price has the issues he has, but we are not yet ready to throw in the towel. There are so many new treatments and possibilities, that we would just be devastated if we missed out on something. We are frustrated with our hospital here. We love our neurologist but it's like we need several brains in the room together. This going to see a neurologist and then going to see a geneticist and going to see an opthomologist...they all have their separate opinions and we are getting nowhere. Granted, we have ruled a lot of things out but as we are discovering, there is so much more research and tests that can be done.

So we have decided to take Price to Duke Children's Hospital, hopefully within the next month or so. We have been in contact with a wonderful doctor there who is making arrangements to have Price seen by several doctors all in a matter of several days. She admits that her peers might not come up with anything, but we want to go anyways. Price has not given up on us and we are not ready to give up on him. As hard as our boy works, he deserves to have parents fighting for him even harder.

Of course my real prayer is that the Lord would just miraculously heal him and that this chapter of our lives would be over, but until then we keep on keeping on, asking Him to guide us each step of the way.

Tuesday, January 4, 2011

Wrestle Mania



Everytime Price would roll over Street, Street would make this grunt-like laugh. It was so funny. And Street did some of his own rolling today - rolled over from his tummy to back for the first time!
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