The Stedhams

Day 24

2012-01-28T14:26:00.003-06:00

Woke up this morning and realized we needed some laundry action, so that meant only one thing...hotel, motel, Holiday Inn! (If you didn't get that, do yourself a favor and google Rapper's Delight. You're welcome.)

You know you've been somewhere a long time when you take a vacation from your "vacation". Since we're going to the Holiday Inn we of course make a day of it and hit up the very Western breakfast buffet, complete with pancakes and scrambled eggs. It's especially welcoming because all the staff knows us by now and they LOVE Price. He smiles = they all giggle. I'm waiting for a free meal out of the deal, but I guess it doesn't work that way over here. Once we're done with breakfast, we still have about 2 days to kill before we have to be back at the hospital, so what do you do In Qingdao when you've got all day to kill??? That's right, you walk to Walmart.

On the way we stop at the world's biggest empty shopping mall, a.k.a. the Powerlong Qingdao Super Mall. You can't fully understand it unless you see it with your own eyes, but pretend they built the Galleria and Memorial City and a couple other big malls all on top of one another and put an amusement park with a full-size roller coaster inside it and that will kind of give you an idea. Then also pretend it's 4 stories tall and 90% of the stores are empty. Very weird, very bizarre. But that's how the Chinese roll, built it huge, build it fast, and don't worry about it. Couple that one instance of excess development with the incalculable (here's to you Michael Scott) number of high rise condos that are halfway to completion and on hold, and you have yourself an nice little economic crisis on the horizon. That's China for you.

Price has been doing great. I mean, he was made for this kind of a trip. Price, I need you to go to this new place and sleep in this new bed and meet all these new people and eat this new food and do the same thing over and over again every day, and please don't complain. No problem. The guy is an adapting machine. He'll do whatever we ask him to, whenever we ask him to, just so long as we provide plenty of food and Blues Clues. And through it all he's had the best attitude anyone could expect from a 3 year-old little boy. He just loves life and brings joy to those around him. You're the man, Bro Bro.

Movie update, Holiday Inn version.

We've now spent a decent amount of time at the Holiday Inn and thoroughly enjoyed the free HBO. Here's some thoughts. Remember, don't judge a man until you've walked a mile in their shoes....

Megamind - Awesome.

Despicable Me - Also awesome.

Van Helsing - I'm sorry to say, it was not my first time to watch it in its entirety.

Honey - Watchable, barely.

Glitter - Tried but couldn't make it to the end. Mariah can sing, so that's good.

In the midst of all this mindless movie-watching, I am reading a really deep book on apologetics by William Lane Craig. The fact that I can watch about 3 movies with same brain power it takes to read 1 chapter of his book should tell me something. I wish movie comprehension had been a section on the SAT. Once I finish it, I'm going to read the book on Seal Team Six my friend from the U.K. left me before he went home yesterday. I told him he had to read Unbroken and Lone Survivor.

Snow Bai, our waitress at the Holiday Inn. She loves P and he likes her too.
Our trip to Walmart. P fell asleep on the way home.
Proud of himself for putting the lid on water bottle
Watching Blue's
Splashing in the itty bitty tub
Powerlong Mall...I think they should put one of these in front of Memorial City
Roller coaster and amusement park
The moats and boats. Smells like a Chinese sewer. Ugh.

Blue skies and clues

2012-01-26T12:18:00.004-06:00

**News on the home front is that we had quite an exciting last night. We had a security system installed and something happened in the middle of the night that caused the panic alarm to randomly go off. It is not a siren, and instead just a couple of beeps. Thinking it was just the new system acting up, I turned it off, and went back to sleep. About 10 minutes later, police were banging on my door and flashing their lights into my dining room window. I was half asleep and confused as they came in to check the place out, since I could have been under attack. I would have really appreciated that had that been the case. Next thing I know, the firetruck pulls up and they tell me the ambulance is right behind them. Too bad Street wasn't up. The fire truck would have rocked his world. Nathan's sister, who is spending the nights with us, thought one of the firemen was pretty handsome. Maybe we should get some cookies to the fire station as a thank you and see if he's single?

Now to Nathan's update...

I saw my first blue sky today since we got to China. They're not exactly into the clean air movement over here. To my point, I looked at the weather on my phone the other day and the current conditions were "smoke"... never seen that one before. But it's weird because they are very big into conserving electricity, so much so that they turn off most of the lights in the hospital at night. Makes things a little spooky but you get used to it. Another oddity of the Chinese hospital, family members of patients many times will sleep on the floor in the hallways instead of at a hotel. And here's the kicker...they make them pay to sleep on the floor!! Gotta pay the bills somehow, right?

The Chinese New Year celebration continues. I almost don't even notice all the explosions going off any more. These Chinese people love them some fireworks. Best part of the holiday so far for me and Price was the home made dumplings one of the translator's mom and grandmother sent us. Home cooking is the best even in China.

Price threw the biggest tantrum of his life last night. His little brother would have been proud. It was pretty impressive, the nurse even came to our room to see if he was okay. I told her everything was fine, except I had to say it a few times because she couldn't hear me over the screaming. Like I said, pretty impressive. (I'm not sure exactly what set him off, but it had something to do with his Blue's Clues DVD not working. It's a love/hate relationship with Blues Clues, really). So what do you do when your 3 year old is losing their mind and it's close to bedtime??? You get them in their PJ's as fast as humanly possible and get them in bed. Since he was already blowing the roof off the place and it takes 20 minutes for the water to get warm in the bathroom, I decided to skip bath time, but I did go ahead and wash his hands and brush his teeth. Let me tell you how much he loved that. By this point he was almost spent but he was still doing that involuntary sniff jerk motion in between breaths they do when their running out of steam. I stuffed a pacifier in his mouth and turned off all the lights and waited for the end to come. There was some faint moaning for a little while, but he didn't last long. I was actually kind of proud of him for putting on such a show. We said we were hoping he would do at least one new thing as a result of us coming here. Well, not exactly what we were going for, but hey, we'll take it.

Don't worry, Price was back to his usual smiley self this morning. Praise the Lord.

Chinese New Year

2012-01-22T13:03:00.003-06:00

It's Chinese New Year's Day. It's like the 4th of July but way colder and with way more fireworks. It's one of 2 days a year anyone in the country is allowed to shoot off fireworks so they take full advantage. It's like a celebratory Shock and Awe. I now have a better understanding of what it sounds like to be in those places you see on CNN with all the explosions going off in the background behind the reporter. .

Price did great on the recovery after his most recent lumbar puncture. That's 3 down 1 to go. Everybody keeps asking if he's doing anything new, you know, like are the stem cells working. It's hard for me to say how much he's changed because the changes are probably subtle, and I've been with him every waking minute these past couple of weeks. But, that being said, his new tricks include crawling in and out of his stroller and, my favorite, he now manages to take his pants off in his bed every night. Now when I say to him. "Price, keep your pants on," I literally mean, keep your pants on.

There's a market here that would make a even the most ardent Shopaholics head spin. It's like the Galleria on steroids. And it's ridiculously cheap. Shopping is not really my thing, and it's definitely not Price's thing, but even we we've been compelled to go in there a couple times and do some damage. There's a secret store under lock and key that sells swords that a guy is supposed to help us get into so I'm looking forward to that. Our Scottish friend got a little carried away in there and ended up with a small armory. William Wallace would be proud.

There's been a lot of down time in China and I'd like to say that I've been reading lots of enlightening books, but that's just not the case. Left to my own devices, I'm much more of a movie guy. I guess I'm just like the rest of America...addicted to moving images and voices from a screen. That being the case, here's a list of my 10 favorites so far....

1. The Warrior. Awesome even for non-UFC posers.

2. Master and Commander: The Far Side of the World. Russel Crowe sounds really cool as a British navy captain.

3. Fargo. First time to see it. A little rough but the lady that plays the pregnant sheriff was amazing.

4. Body of Lies. Seen it before a couple of times but I'm a sucker for espionage thrillers. Again, Russell Crowe is 2 legit to quit.

5. Ocean's 11, 12 & 13. All three are very entertaining. I actually like the 3rd one the best.

6. Hanna. Meh.

7. Margin Call. Pretty good but just because I like Paul Bettany and Kevin Spacey.

8. The Rise off the Planet of the Apes. Half decent.

9. Moneyball. My Ipad's video crashed about halfway through, but I was really liking it. I thought Ipads weren't supposed to crash???

10. Puncture. More technical difficulties. I started it and didn't finish it within 24 hours so it got erased off my Ipad. Thanks again, Apple. I really wanted to know the ending but I'm not forking over another $3.99 to find out.

Price's two favorite nurses, Lucy and April

Price or Darth Vader? Stimulating the vocal cords. Ellery liked this one.

Price's buddy Collin

Taking his pants off...again

Nurses and translators hosting the New Years dinner

Learning how to make dumplings

The feast

Update from China

2012-01-17T20:19:00.004-06:00

China is now a full-blown guys trip. Price and I are perfect roomates because we both like to eat lots of snacks and watch tons of movies. Fortunately for me, Price can watch the same 6 episodes of Blues Clues 20+ times and still laugh at the same parts every time. May God bless Steve Burns and his green-striped shirt. For those who know Blues Clues, you'll be glad to know Price is a Steve fan all the way,he's not big on Joe. He's a purist. When Steve goes off to college Price loses interest real fast. Outside the room, Price is a crawling machine. There are lots of long hallways in our wing of the hospital and Price goes up and down them non-stop. And of course there's a staircase in the lobby that he climbs and descends as many times as I'll let him. The floor above us is all Chinese patients and their parents so it's kind of an international trip for him. When he gets to the top there's usually a few Chinese moms who cheer for him and try to pick him up but he laughs and shakes his head and puts it in reverse and scoots away from them. He thinks it's hilarious. Needless to say, Price loves all the attention and everybody loves Price. Price has also figured out how to go down the stairs feet first, which is much less hazardous to his forehead.

The most pleasant surprise of the trip so far has been the relationships we've been able to form with the medical and other patients. The doctors and nurses and translators have all been awesome, making us feel right at home since we got here. It's a much different experience than you get in the States in that you get to see and talk to the doctors everyday, sometimes even several times a day. They are constantly checking in to see how we're doing and readily available if we need anything. The nurses travel in packs. They usually visit 3 at a time, and they love to sing to Pricey, especially when he smiles and laughs. You can tell all the medical staff really cares about the patients, and that makes us a lot more comfortable about being here. The translators are awesome. Without them we would be hopelessly lost.

There's an older couple here from Canada that we've been tagging along with some. They run a grain farm back in Saskatchewan and sell most of their grain to the Chinese. And they end almost every sentence with "eh?" Very Canadian and really neat people. There was a Scottish couple arguing over how to turn on the Xbox the other night which made for some interesting theater. I'm pretty sure they were speaking English but I have no idea what they were saying.

- Nathan

Jet-lagged thoughts

2012-01-16T14:46:00.004-06:00

Today, Street pointed to a plane in the sky and said, "Bro bro."

Ellery ate breakfast this morning by herself at the table and said, "Breakfast is not fun by myself. I need Price here."

Last night, we skypped Nathan and Ellery broke out into tears and said, "This is so hard." I told her it is hard and it is okay to cry, but we have to be strong because the Lord said, "Go."

I am back to the weekly routine, but part of me is still in China (not to mention, my body clock still is too).

I miss the simplicity. I miss the relationships with people that are nothing like me. I miss the lack of technology. It's really all about people, isn't it? Loving people.

I told Nathan maybe we should live in China. He said that I should rethink how to bring our experience to where we live. To our home.

Price had a harder time with his second lumbar puncture. Some fever and vomiting.

He has his third one on Friday. Please pray for his little body.

Other than that, he is all smiles, according to his daddy.

Last day

2012-01-13T02:28:00.006-06:00

Today is my last day here in China. I have such mixed emotions. I

really am loving my time in China. (Even the muddy shower water we had last night wasn't that bad - I thought of it as a really luxurious body mask.) It has been somewhat relaxing and in some ways so simple. It's been quality time for the three of us. I especially have enjoyed meeting
the Chinese people here as well as the other families who are on
different yet in some ways similar journeys. We kind of have become a little mixed
family from all over the world. As soon as one family departs, another one is arriving.

I am, however, really ready to see my babies at home. I have missed
them like crazy, but the Lord definitely has supplied me with strength
and the ability to rest in knowing that they are being cared for and
very loved back in Houston. It will break my heart to not walk through the rest of this journey
with Nathan and Price, but I am leaving P in good hands.

Last night we took the translators out to dinner at the Holiday Inn
(it's a 5 star restaurant here in Qingdao). We had some good laughs,
great conversation, and the best food we've eaten since we got here.
They told us that Nathan looks like Tom Cruise and that I look like
the lady from Mr. and Mrs. Smith. That really made us laugh. I think
it's just because we are white.

Price is settling into the routine here, crawling and climbing stairs
constantly, and charming the nurses and doctors with his smile. He
especially loves riding in the taxi without a car seat and the
hospital elevator. We have had some ask us when we might expect to
see the stem cells at work, and the truth is that it varies with each
individual. Evidence of them working can happen instantly, a month
after, 6 months after, and even up to a year. And because Price can't
tell us what he feels or sees, it's harder to gage. We are trusting
the Lord with the outcome.

Nathan is going to send me updates from China for the duration of
their stay that I will post on the blog. I have pictures to post when
I get home as well. Please pray for safe travels for me and for my
boys that I will be leaving behind.

"To this you were called, because Christ suffered for you, leaving you
an example, that you should follow in his steps." 1 Peter 2:21

{excuse the weird formatting...don't know what's up with that}

Big day

2012-01-11T03:19:00.002-06:00

Price had his lumbar puncture procedure about 4 hours ago. We were able to walk him back to the operating room and Nathan held him as they administered the anesthesia. I had to leave for that part. I am not a big hospital person as is, and let's just say the OR's in China don't look quite like the ones back home. It was a little scary handing over my boy to nurses and doctors who are speaking in a foreign language and wearing what we would call "shower shoes". At least our translator assured me that I am not the first mom to be a little concerned.

The procedure took about 30 minutes and then they waited for Price to wake up before wheeling him out to us. The nurses loved him and told our translator that they were in love with his beautiful eyes and long eyelashes. They also said that he was smiling and laughing at them when he was waking up. I think to say Price loves the Chinese people, especially women, is an understatement. I think the Lord knew what He was doing when he gave us his sweet physical therapist Irene, who is Taiwanese, 2 years ago. He has definitely gone before us.

Price was groggy when we got back to the room and motioned for his bed. He has now been sleeping soundly for about 3 hours. We have 3 more to go before he can sit up, but so far so good. Thank you for praying. This boy is precious to us.

"Devote yourselves to prayer, being watchful and thankful." Colossians 4:2

First Treatment

2012-01-09T20:15:00.003-06:00

Good morning from Qingdao! It's a smoggy one here. Yesterday, Price had his first full day of therapy and treatment, and it was a success. After our doctors came to meet with us around 9am, Price headed to the OT room to do wave therapy and then a Chinese cupping therapy. The wave therapy consists of the doctor putting electromagnetic pulses on Price's brain and then on his legs. This is made to stimulate the nerves. Price tolerated it very well, in fact, it practically put him to sleep. He held the teddy bear that Ellery made for him and was perfectly still. He then had the cupping therapy which consists of the doctor putting warm glass cups on his back like a suction. It's different and strange, but kind of like everything else we have tried, we say bring it on if it could possibly help. If you want to, google it. It's pretty interesting.

The nurses came in to place an IV in Price's hand after OT to get him ready for his stem cell treatment in the afternoon. The nurses are great. Picture three young Chinese nurses with the old school nursing hats on singing "Twinkle, twinkle little star" in Mandarin.

Fast forward to the afternoon. We had to drag Price out of bed to get him to the IV room, where he received a drip of stem cells. He has been pretty lethargic this trip so far due to the time change, and the IV gave him a surge of energy. He perked up and was crawling around the entire floor at the hospital. He has a little buddy named Collin (from Scotland), whose dad is here receiving treatment.

Price slept well last night and woke up rested for his day today which will be another day of therapy. He will receive the electromagnetic wave therapy, accupuncture, and then physical therapy and standing therapy in the afternoon. This morning we boiled eggs for breakfast and plan on making beans and rice for dinner. I've got to make sure my boys get plenty of protein. I also have clothes hanging up to dry.

Tomorrow is Price's lumbar puncture. He will have the procedure around 2:30pm our time, which is 12:30am Houston time. He will go under general anesthesia. He has to stay completely still for 6 hours after the procedure, which might be difficult for Nathan and I to control considering we have not been able to stay awake past 7:30pm.

Nathan and I are submitting our plans, our hopes, our dreams to the Lord. We just ask that He glorify Himself in and through us for the duration of our stay. We are also thankful for the relationships we are establishing with the other families and staff here.

Thank you for continuing to pray.

Stem cells

Wave therapy

Adjusting

2012-01-08T14:11:00.008-06:00

This weekend has been full. We've been adjusting to the time change. Price has been waking up at around 2 or 3am every morning but this last night, he woke up, I gave him some melatonin, and then he went back to sleep until 5:30am. He's been falling asleep at the dinner table every night too. We will eventually get there.

Our translator took us to a supermarket type store on Saturday and it was a crazy experience. It was so crowded (a little more so than usual he said because of the weekend and the fact that Chinese New Year is approaching) and barely anything was recognizable to us. Things I had never seen before too - pig heads, feet, livers, hearts. Quite the experience, to say the least. We purchased a few things so that we can possibly cook a little while we are here. It's hard because there is some "unsafe" food and the Chinese don't regulate their food quite like the USA. We are better off just sticking to cooked or packaged food which pretty much goes against what I enjoy buying back at home. Nathan tells me to relax, and that it will do for 30 days. I have never been more thankful for the food and quality of food that we consume back home.

Today, we walked to the WalMart here. It was much easier to manage and I think Nathan will do the majority of his shopping there once I am gone. We will be doing our own laundry (old school soap and water and drying on a line) and so purchased what we needed for that, as well as some better pillows, and a bath mat. The hospital room is a little rough, but nothing that we can't handle for 30 days. Ellery is going to send some pictures to help spice up the room a bit.

Tonight, we are planning on taking a trip downtown and doing some sightseeing. It's right off the Fushan Bay, and we have heard it's beautiful.

Nathan has a new buddy, Peter, who is a translator here. He's awesome and really giving us so much insight on the Chinese culture. I'm so thankful for him and the companionship that it will hopefully bring Nathan once I'm gone. Peter loves Yao Ming, and thinks we are pretty cool being that we are from Houston.

We are anticipating Price's first treatment tomorrow. Please be in prayer for our boy. We are praying that his body accepts the stem cells well and that he has no side effects. It is so surreal that we are here, but we are thankful for the Lord's mercies and peace every step of the way. We are hopeful.

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

View of Qingdao from our hospital room

Made it to Toronto

Watching Blues Clues from the airport lounge

The Lord mercies

The hospital

Look what we found!

Having a hard time adjusting

Happy boy

We are here!

2012-01-06T10:47:00.008-06:00

Hey everyone! It's Paige, Kristen's sister. Unfortunately blogger isn't available in China, so I will be helping Kristen send her updates to friends and family.

We are here!

We made it to Qingdao, China. Price was a complete stud and did so well on the 26 hours of traveling. He slept like a champ, unlike his mom, who is still quite jet-lagged. Today was our first full day at the hospital and we met with Price's doctor, physical therapist, and several of his nurses. He had his blood drawn this morning at 8am and the three Chinese nurses sang to him in harmony while taking his blood. He barely shed a tear. He has also completed an EKG and x-ray. We have a couple of translators that are showing us the ropes and have been so helpful and nice. We are probably such pesky Americans asking so many questions about Chinese culture. We just really love hearing about their lives here.

We ate our first meal out at none other than McDonald's, which if you know me makes me cringe a little. Price had his very first McDonald's cheeseburger and thoroughly enjoyed it. I must say it all tasted pretty darn good. We get lots of looks out in the town. Must be the cute boy with the blue eyes and blonde hair.

The doctors we met with were very positive and although they said that they can't give Price a diagnosis (I mean...who really can?), they said stem cells could possibly help. We have met several families (from South Africa, Scotland, and Maryland) already who are at different stages of treatment, and everyone's experience has been a positive one.

We will have the weekend off and then on Monday Price will have an IV stem cell injection. Hopefully, his little body will take well to the stem cells and then he can start the lumbar injections Wednesday or Thursday. He will have a busy schedule of physical and occupational therapy, accupuncture, and some electric wave therapy (which I need to learn a little more about).

I have to say the first night we got here I was a little sleep deprived and whiney but the morning brought so much joy. Thank you for your prayers. We have felt them.

"Even the youths shall faint and be weary, and the young men shall utterly fall, but those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint." Isaiah 40:0-31

China 2012

2012-01-01T13:17:00.002-06:00

Happy New Year! We spent last night just hanging out with some of our best friends. I couldn't think of a more perfect way to welcome 2012. Ellery rang in the new year with us for the first time too, which was fun.

I have never made New Year's resolutions, but this year I have 4 areas that I desire to make some adjustments/improvements. Spiritually, I will read through the Bible in 2012. Chronologically this time. Physically, our family is on quite a health journey. I have always been one to ask why and challenge the status quo, and so researching is a natural role for me. I want to dig deeper this year and hopefully blog about it as well. As a mother, I want quality time with each of my littles. I want to joyfully take the time to sit with them, play with them, and converse with them. I do this already, but want more of it in 2012. Our lives seem to get busier and busier. And finally, some goals for our marriage as well.

We are starting 2012 off with a bang with our trip to China. Here is our specific list of prayer requests. We would be grateful if you would pick one or two and pray for them as the Spirit leads.

(oh, and just to add, there will be someone at our house at all times while we are gone. so this is not an invitation to plan a break-in. sorry, that was part of my fear in posting our trip online.)

Trips to and from China
Nurses, therapists – everyday caregivers
Doctors who will make decisions on treatment
Doctors who will perform the anesthesia and lumbar puncture procedures
Days of lumbar punctures and the recovery – 6 hours of lying still post op
The actual stem cells that will be used (divinely selected, safely harvested and stored, properly administered in procedure, etc.)
Effectiveness of stem cells once they are in Price’s body (that they would be accepted by his body, that they would find the problem(s) and HEAL, that they would make their way to his brain)
At least one new motor skill and improvement of all existing skills

Relationships with medical staff and other patients and their families
Decision making while in China, clarity of thought, unity
Being apart as a family
Living conditions and attitude while in China. Lots of down time in hospital and cut-off from friends and family back home; time change
Street and Ellery’s time at home (protection, health, etc) and for our families taking care of them
I had a moment of maybe this is a bad idea/we shouldn't go. That same morning Price fell flat on his back or on his face literally 5 times in an hour. He was desperately trying to keep up with his brother and explore, but it's just plain harder for him to do so. He would pull up on something and then lose his balance, cry, cry harder when I applied ice on yet another goose-egg of a bump, and then get right back up and go at it again. He is one determined boy and deserving of a just as determined mom.
Thanks again for journeying with us. Happy 2012!

Merry Christmas!

2011-12-24T20:06:00.002-06:00

For unto you is born this day in the city of David a Savior, who is Christ the Lord.

Luke 2:11

Acceptance-with-joy

2011-12-23T11:22:00.004-06:00

Ellery woke up this morning and declared, "I'm so glad I have two brothers. And that one of them is extra special. Brothers are the best. I could have had sisters but I get to have brothers!" She then proceeded to jump all over the couch and slide down the makeshift slide she had created as both of her little brothers watched in awe and then eagerly followed in her footsteps. It was one of those moments where I really took in all that she had so joyfully uttered and thought to myself that I'm so very blessed. I also thought to myself that this is the thankfulness and joy the Lord desires from my own heart. Thankful for every blessing, every struggle, every pain, every joy because they all ultimately bring me closer to Him.

Christmas time has been hard for us the past couple of years. The first year, we were awaiting some pretty intense genetic testing results for Price, and then this last year we had been hit with the devastating news that the neurologist wanted to test him for degenerative conditions after a not-so-stellar MRI. We spent most of the holidays waiting for a phone call.

This year we are in a much different position, but waiting nonetheless. We are preparing our family for a trip to China. Our family will be apart for over a month. I have no idea of what to expect or the emotions I will feel knowing that for some of that time my boy will be having medical procedures done without me by his side. Or how much I will miss my "bookends" while I am on the other side of the earth.

I do know that this Christmas season, I am truly at a place of acceptance-with-joy. I accept with joy the life the Lord has planned for Price, whatever it may look like. I accept-with-joy the possibility that stem cells won't do a single thing. I accept-with-joy that this trip could be for some completely other reason than for Price. We do know that the Lord has illuminated this next step in our journey and so, like my daughter, I want to have a heart that overflows with thankfulness and joy at what the Lord desires to do in China.

{Nevertheless, OBVIOUSLY we are praying for the Lord to use this trip to bring healing to our boy. I think I will post the list of specific prayer requests we are giving to our friends and family. We would be grateful for your prayers for our family.}

This boy

2011-12-19T20:54:00.010-06:00

is 14 months old already

has started climbing and jumping

shakes his head for no and for yes...it's a pretty funny sight

does the happy feet dance when he's frustrated

loves itsy bitsy spider and doing the hand motions

calls lulu "wuwu"

airplanes, birds, trucks, vacuum cleaners, dogs, squirrels...a few of his favorite things

loves to put his hands over his eyes and then shout, "Boo"

says the sweetest "bye bye"

gets into everything and then some

likes to back into things and go in reverse

is so goofy and makes everyone laugh

takes a bite of his snack then offers some to his "bro bro"

is always wanting to eat

loves to throw away trash and "clean"

woke up with a black eye this morning...a fight with his bed maybe?

Pictures with Pipes (and Lulu and Poppy)

2011-12-15T22:32:00.009-06:00

Goodlight Photography

Our favorite chicken

2011-12-13T16:05:00.002-06:00

I usually make this once a week. It is a hit with everyone!

3 pounds of chicken (either breast or thigh)

1/2 cup flour, gluten free

1 tsp natural salt

1 tsp paprika

1/4 tsp sage

1/4 tsp ground black pepper

1/2 cup of unsalted butter

Preheat oven to 375 degrees. Mix the flour, salt, paprika, sage, and pepper together and put in a plastic bag. Add the meat to the bag and shake until well coated. Melt butter in a 9x13 baking dish in the preheated oven. Place coated meat in baking dish and bake for 15-20 minutes on each side.

Enjoy!

China

2011-12-10T20:45:00.002-06:00

3 months ago, the whole family is in the car taking Ellery to school, when Nathan blurts out, "I think I want to take Price to China."

Come to find out, he'd been praying and researching about a type of stem cell treatment that has had some success in helping patients with ataxia.

Umbilical cord stem cells. Ataxia: uncoordinated movement (in Price's case most likely due to cerebellum issues).

Yes, we have banked both boys cord blood but are unable to use it due to P's lack of diagnosis and inability to qualify for an FDA trial. Believe me, we have exhausted this avenue. Maybe at some point in the future.

Nathan and I prayed, skypped and talked with families all over the world. We waited for a red flag, a concern. We debated, what would P want?

This is not without risks. It's scary. But we believe it might be worth it.

Our tax return came back the highest ever this year. We rejoiced that it would help pay for treatment.

We prayed and prayed some more. We cried. We talked. We planned.

We are going. 30 days in China. 30 days of medical treatment, physical therapy, and so much more. 30 days of befriending people from all over the world who are in need of hope.

Yes, we hope that this treatment will offer P a better future. Not because we don't think he's perfect just as he is, because we do. But, because we want the world for him. We'd do anything. Go anywhere. To the ends of the earth. But, OUR hope is in the Lord. For, there can be no healing apart from Him.

Thanks for journeying with us. Definitely to be continued.

Trip NYC

2011-12-06T12:05:00.006-06:00

Nathan and I just returned home from a fantastic trip to New York City with some good friends. We hadn't been away, just the two of us, in, well..I can't really remember. One of the couples that went with us lived in NYC for awhile and so they planned our jam-packed itinerary. We lived it up like true New Yorkers, riding the subway everywhere, eating street meat (well, some of us did...I opted for the pretzel), and staying in a room that was the size of my mom's closet. It was awesome.

The Brooklyn tabernacle worship on Sunday. It's truly like a little glimpse of what I imagine heaven to be like. There was not one empty seat (this picture was taken early), and I think the floor was literally moving with all the praising, dancing, and clapping going on. I loved being in the minority and was only a little disappointed that we didn't get to hear Jim Cymbala.
We visited the 9/11 memorials. What a humbling sight. The pregnant women who died that day had their name on the memorial along with "and her unborn child". That really stuck with me. Every life lost that day was so precious, including those unborn children.
Another view of the memorial
Our night out on Broadway
Random picture but the only one I have of the two of us.
Random bathroom picture
Brooklyn Bridge...we walked the bridge. Glad I did it, but didn't love it. They were spray painting, so the fumes plus the height didn't go so well for me.
Riding the subway with Melissa
Macy's store front

Every meal we ate was outstanding and the fact that it included no screaming children made it even that much more enjoyable. What a blessing to get away, have our kids well taken care of by so many at home, and recharge. I was so ready to return home Sunday night...there's really no place like home.

On our return flight I couldn't help but think about the hugeness (is that a word?) of the next trip we will be taking. This time it is literally on the other end of the earth. Destination China. And no, it's not to pick up a child (although Lord willing, that might happen one day).

Happy Thanksgiving

2011-11-24T20:50:00.002-06:00

"Thankfulness takes the sting out of adversity. That is why I have instructed you to give thanks for everything. There is an element of mystery in this transaction. You give Me thanks (regardless of your feelings), and I give you Joy (regardless of your circumstances). This is a spiritual act of obedience - at times, blind obedience. To people who don't know Me intimately, it can seem irrational and even impossible to thank Me for heartrending hardships. Nonetheless, those who obey Me in this way are invariably blessed, even though difficulties may remain.

Thankfulness opens your heart to My Presence and your mind to My thoughts. You may still be in the same place, with the same set of circumstances, but it is as if a light has been switched on, enabling you to see from My perspective. It is this Light of My Presence that removes the sting from adversity." Sarah Young in Jesus Calling

Always give thanks to God the Father for everything, in the name of our Lord Jesus Christ. Ephesians 5:20

Love this voice

2011-11-15T19:57:00.006-06:00

I have not been blogging. Truth is we have been really wrestling with some big decisions around here. We have been praying through some things, seeking the Lord's direction, and waiting. And every time I go to blog, I can't think of much else to blog about. I come up empty. Hopefully I can share some of what is on our heart real soon.

In the meantime, how sweet is this?

She is a music lover! Many nights of the week she has a jam session with her daddy before bed.

A beautiful song

2011-11-13T20:19:00.000-06:00

Within the womb I formed you
I fashioned and made each part
I thought of your fingers, your hands and your feet
Your mouth, your lungs, your heart
Though you might think that you’re different
I made you the way that you are
So you could discover the God who made you
And find out all I am

And though you might think you have limitations
There are no limits with me
When you turn your eyes to my salvation
Finally you will see

In Me, you have all that you need
In Me, you have all that you need
In Me, you have all that you’ll ever need.

And I’ve heard each prayer that you’ve called out
“Why did you make me this way?”
You may not completely understand now
But there will be a day
When I make everything known to you
And what you don’t now understand
You will see that I”m wise and I’m mighty and good
Just like all my plans
And if you trust in the work of my Son
One day you will see
That I’ve made you the way you are
To draw your heart to me
To draw your heart to me.

- Bob Kauflin

You can listen to it here.

A walker

2011-11-11T14:39:00.004-06:00

We are borrowing a walker for the weekend until Price's comes in a few weeks. Here is my boy walking out of therapy on Thursday.

(Excuse my manly voice. I have been battling a little cold this week.)

Reading

2011-11-04T19:23:00.003-05:00

I had no time for blogging this week because in my free time (ha..ha), I was devouring this book...
You should definitely get it and check out her ministry, Amazima, as well!

Oh, but I will add this piece of exciting news. We just ordered Price's walker! We found one that looks like it will be a good fit and it's on the way. I'm giddy.

Halloween and Hookie

2011-11-01T15:39:00.003-05:00

Ellery wanted everyone to be a character from The Wizard of Oz, but the boys (especially one in particular) were not having it. So we improvised and Street was a football player. A football player with one little eye thingy because he tore them off about as soon as I got them on.
Dorothy and Toto. Ellery sang at our church's fall festival and then we came home to trick or treat a little and hang out in our neighborhood. We learned that we don't need to be out after 8pm on Halloween night. Some junior high kid with a "scream" mask, came up and yelled in Ellery's face. I am pretty sure she is scarred.
Hut, hut!
Price refused to change his clothes and then whined when we wouldn't let him go trick or treating. He's also been in time-out two mornings in a row. Yes, I think the "terrific-two's" are hitting us a bit late.
Today, we played hookie from school and I took Ellery and Street to Dewberry Farms. We enjoyed time with friends we haven't seen in awhile and the beautiful weather. Street is in awe of the milking cow in the picture above. He kept saying, "Dog, dog!" He finally got the "moo" down when we were leaving.
Besties forever these two. I pray they always remain close. There is something so special about being friends since birth.

"More, more!"

Standing tall

2011-10-23T22:21:00.002-05:00

Week Recap

2011-10-20T21:18:00.010-05:00

This past weekend we participated in Price's school's fun walk and carnival. Price loved seeing his teachers somewhere other than the classroom and our friends, the Meltons, were super sweet and supportive to come walk with us. We have been blessed with such incredible friends that have truly carried our burdens and made this journey a little lighter. Not to mention, our new friends that ARE walking a similar journey. We are thankful our paths have crossed.

I feel like I have been awaiting test results for approximately 2 1/2 years. I really don't like it. I pretty much have Texas Children's phone number memorized along with some Duke ones. About a month ago, a nurse from Duke called and my heart about skipped a beat. I knew we had no pending test results, just habit I guess. We've waited and waited some more. Wednesday we received a call from Ellery's oral surgeon and it was good news. Thank Jesus. She had what is called a giant cell fibroma. So rare for a 5 year old but completely benign.

On Tuesday, I picked Price up from school and his teacher mentioned he was a little sleepy. No sooner than I had buckled him in his car seat did he start throwing up everywhere. Over and over. He doesn't really have the reflex to bend over or stick his head out the door, so Price, his car seat, and my car was a total disaster. I guess one of his teachers saw this go down and she came to get Price and take him back into the classroom to clean him up. She's truly a saint (and now the owner of a gift card for a new shirt). She washed my boy down from head to toe while I tried to somewhat clean up the inside of my car so that we could actually drive home. Thank the Lord it was a windy day (as opposed to the previous days of hot, sticky humidity) and some rolled down windows helped me to survive. I looked back at my pale, sickly little boy on the way home and he managed a smile, almost as if to say, "Thanks, mom."

Later that night, Street came down with a cold almost out of nowhere, so we spent Wednesday and most of Thursday indoors. Except, Price had his appointment for orthotics Thursday afternoon. All went well and he's got these brand new blue race car AFO's. Our appointment took forever and I soaked up the minutes just holding my boy and watching episodes of Blue's Clues on my phone. He really is such joy and I love spending time one on one with him, although the lifting and carrying does take a toll. (I must get to the gym if I am going to be this boy's feet for too much longer.) He's been very generous with smiles and kisses and is loving me well lately. I will take it! As we were leaving the orthotic place, I got just a little teary. I am so thankful for his AFO's and that it means he is actually bearing weight and working on new skills, but at the same time there's just that part of me that wishes I didn't have to know about AFO's. I took Price to buy some new shoes after his appointment and we had to go up about 4 sizes to get them to fit his orthotics. I am going to have to get use to these huge, big boy feet. Price picked out a fish stuffed animal at the store and then we made ourselves sick eating gummy bears on the way home.

I have been reading a book by Larry Crabb called "Shattered Dreams". My mother-in-law let me borrow it last time we were visiting. It has truly blessed me as it discusses the story of Naomi and how God stripped her of happiness in order to prepare her for joy. He says, "God is always working to make His children aware of a dream that remains alive beneath the rubble of every shattered dream, a new dream that when realized will release a new song, sung with tears, till God wipes them away and we sing with nothing buy joy in our hearts." I am only about half way through it, but I am enjoying the author's honesty.

Praising Him for good news, Lysol, and shattered dreams this week, and still believing He will do a mighty work in my boy's life and in our family. Have a blessed weekend, friends!

Cruising

2011-10-20T21:07:00.003-05:00

And the icing on the cake...

2011-10-17T21:03:00.005-05:00

After almost everyone had left Street's party, Price busted out with this! This is his FIRST time to ever CRAWL on all fours. That's his Aunt Meredith cheering him on. He adores her, especially when she's laughing.

Street's partay

2011-10-17T20:18:00.004-05:00

I have so many thoughts running through my head that will hopefully come together for a post or two, but I didn't want to forget the fun celebration that took place for a pretty awesome little one year old.

My sister had the idea of throwing Street a touchdown party. I think I mentioned it on here before, but one of the first funny things he learned to do was throw his hands up in the air when someone shouted, "Touchdown, Street!"

An update

2011-10-13T21:14:00.004-05:00

Ellery did great today. She's a little sore but took full advantage of the doctor's order of unlimited popsicles.
Thanks for your prayers. We should hear something next week although the doctor reassured me today that he thinks all will be okay. (Hmmmm...never heard that before.)

I kept this thought on repeat today. I will love Him above everything else...and trust Him no matter what happens.

A prayer please

2011-10-13T08:34:00.002-05:00

If you think about it, could you please say a prayer for us today? Ellery has had a lump (for lack of a better term) on the roof of her mouth for awhile now. We waited to see if it would go away on it's own but it hasn't, and the dentist and oral surgeon agree it needs to be biopsied. So, today at 11:30 she will have the procedure.
I would be lying if I said I wasn't a little concerned especially when my mind runs wild with all the possibilities or that my stomach hasn't felt upside down since I woke up this morning.
Praying for the peace of the Lord as we face another mystery diagnosis.
Thanks, friends.

Street is ONE!

2011-10-10T20:40:00.004-05:00

Dear Street,

You are ONE!

You are such a blessing to us little one. You charm us with your grin and make us laugh at the funny things you do or try to say. You are such a character and it is exciting to watch your big personality unfold.

You haven't stopped moving since day one. You are in constant motion! You don't crawl much at all anymore and your walking gets faster with each passing day. Your vocabulary continues to expand and you make your mama laugh when you try and say words such as "diaper" or "agua".

You love to grab your shoes when you can tell we are headed out the door and are devastated if the trip doesn't include you. You give great kisses and love to clap, especially when I am praising your big brother. Speaking of big brother, you already love to be with him and play side by side. You think your big sister is pretty special too. You are happiest when they are home.

If you go missing during the day, I can usually find you in the pantry signing "eat". You eat so much! You eat just about anything, but your favorites are broccoli and fruit.

Perhaps my favorite thing about you is the way you shower me with love. You are constantly searching for me in a room full of people, you love to stay close when you have just woken up or in the morning when I get you out of bed, and you love to pat me on the back and cup my face in your hands to command my full attention.

We can't imagine life without you. We are thankful for your one year, Street!

{birthday pictures to follow!}

Thankful Friday

2011-09-30T13:30:00.006-05:00

I'm thankful for an easy casting appointment yesterday with Price. We are thankful for the fact that he is finally ready for some AFO's (ankle foot orthotics) to help him with his standing.

I'm also thankful for this little Blue's Clues book he is holding that brings him so much joy. It has already been duct-taped several times in an attempt to save it. Nathan and I really think Price said "blue" yesterday at the appointment. It was so clear, but when we asked him to say it again, he just smiled. I was a little ticked with the thought of his first word being "blue", but how could I be nothing but thankful for a first word?

Most importantly, I am thankful for a Savior whose plans prevail. And I look forward to the day I see how all the puzzle pieces have come together for His glory.

Many are the plans in the mind of a man,
but it is the purpose of the LORD that will stand. Proverbs 19:21

Beauty

2011-09-26T21:06:00.003-05:00

I rarely blog this much in a week. But, kids are in bed, lunches are packed, Nathan is at a movie with the boys, and I am waiting on some hard-boiled eggs to finish up on the stove.

I was pointed by John Knight to an article by Elizabeth Elliot. It's such a great article that speaks to the heart of disability and is written in part by Judy Squier, who was born without legs. Here are a few of the standouts for me.

Judy writes, "...A birth defect by God's grace does not rob childhood of its wonder, nor is a child burdened by high expectations. Given a supportive, creative, and loving family, I know personally that I enjoyed not a less-than-average life nor an average life, but as I've told many, my life has been not ordinary but extraordinary."

She goes on to say, "I am convinced without a doubt that a loving Heavenly Father oversees the creative miracles in the inner sanctum of each mother's womb {Psalm 139}, and that in His sovereignty there are no accidents."

And this is my favorite...."What we judge to be tragic - the most dreaded thing that could happen, I expect we'll one day see as awesome reason for the beauty and uniqueness of our life and family."

Green Machines

2011-09-24T21:14:00.004-05:00

Can I play too, coach?

Dad helped out with drills

More pictures to come from Team Green Machine. It was the cutest thing! Ellery loved being on a team with her friends MadiKate and Ella. (Her coach, Coach Hendee, was actually my sister's soccer coach when she was little and played for a season.) The girl doesn't know a thing about soccer, but she caught on and gave it her all. I asked her if she had a good time, and her reply was, "I got pretty sweaty." That's our girl.

PT is hard work

2011-09-22T17:11:00.002-05:00

Funny man

2011-09-19T20:38:00.005-05:00

This boy is funny. We hear it from everyone. "Street just makes me laugh."

He wouldn't take his daddy's hat off. I would try to grab it off his head and he would put it right back on.

The other day I walked into the house and Street looked at me, spit out his pacifier, and walked to the glider in his room. He was on a mission and would check back every now and then to make sure I was following. He put his hand on the glider, looked at me, and started patting the chair. He was telling me it was time to eat. He calls it "nigh nigh".

When I tell him that something is hot, he blows raspberries, like he's trying to cool whatever it is off. He thinks he is hilarious.

He gets so much joy out of water fountains, stairs, the dishwasher and cabinets. So this is what little 11 month old boys like to do? He walks so fast we are sure he is going to lose his balance at any moment, but somehow he manages. I love chasing him around (most of the time).

He loves to carry random objects from one end of the house to another, especially phone chargers, remotes, dad's belts, and shoes. He also likes to "brush" Ellery's hair and pat Price on the head. Maybe he's seen me do this before? He's not a big fan of people going in and out the door to the garage, unless he's a part of the action. He buries his head on my shoulder if someone asks him to come to them.

He calls Price Bro-Bro and it is the sweetest thing. Today I watched Ellery get protective over her littlest brother. Some "older" boys at school were being goofy and trying to get S to smile, and she kind of hovered over him, making sure he was alright. She told me later she didn't like those boys at all. (Except she did say one was kind of cute.)

I'm thankful funny man has a big sister that looks out for him and for the gift of laughter that he brings to our family!

Deep thoughts {Unedited}

2011-09-18T14:56:00.010-05:00

Well, it seems ever since my last post on praying big, that the Lord has significantly increased my hope and belief. Almost every day this past week, I read or heard something that spoke so perfectly to my heart on this subject.

Price was sick this past week. He was out of school most of the week and just not himself. Having a nonverbal, sick 3 year old is no fun. I found myself at times thinking that this could be the beginning of Price getting worse. We have been told several times that what he "has" could be degenerative, and although Nathan and I really don't think it is, it's a hard comment to just ignore. We saw the "spark" gone from his little eyes for a couple of days (as it does in so many typical kids when they are sick) and I at times wondered if it would come back. I thought about him losing skills that he had worked so hard to accomplish as I saw his movements get a little crazy and his body get stiffer. I didn't allow my mind to dwell on these things at all. They were just quick, fleeting thoughts. Horrible thoughts and total lies.

One night this week, Nathan and I were talking about how the suffering we have experienced has brought us more peace and joy than we have ever known. I remembered my days of anxiously pouring over the internet looking for anything that would help us "fix" our baby. I remembered the anxious calls to the doctors, the days where I could think of nothing but what was wrong with my child. At some point though and by the grace of God, I relinquished my control over the situation. I guess you could say I crossed a threshold where either I could just drown in my anxiousness and obsession with my child OR I could LIVE and experience peace by trusting my sorrow, my grief, my anxiety to HIM. Entrusting HIM with my children, knowing the plan He has is good.

This morning in Sunday school we had a time of prayer at the end. I haven't been to Sunday school in quite some time because of Street, and it felt so great to be back and see so many new faces. As we shared prayer requests, tears starting flowing, walls came down, and couples started sharing their real lives. The suffering was so evident. It came in every shape and form. Abuse, depression, death, pain, children. We laid hands on others and prayed for each request. Friends who had been through similar struggles and pain were able to minister to those beginning to walk the same road. It was simply beautiful.

All this to say (and in a very roundabout and unedited way), that we hold onto the hope and belief that the Lord can work miracles. We trust that He can bring that which doesn't exist into existence. We have faith in the One that with a word can change a situation or outcome. We also know that our suffering is part of a greater plan and purpose. We have confidence that it gives us a testimony. It allows us to pour our lives into others going through similar circumstances. All of the saints suffered. The surrendering of our lives to Jesus, produces in us a peace and joy that can only be found in Him. It provides us with a hope unlike any other. It provides us with a peace and rest knowing that this world has nothing for us. That we are made for something so much greater and that we are not yet home.

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy." (Romans 15:13)

{Oh, and by the way, Price's sparkle did indeed come back. He is back to being himself and the little star that he is.}

11 months and praying big

2011-09-11T20:27:00.004-05:00

As I write this, Nathan is at the ER with Price. His breathing just kept getting worse on our car ride home from Austin today, and we decided he most likely needed a breathing treatment and steroid. Price is such a healthy boy and rarely sick, and it's so sad to see him fighting an illness, especially because he can't communicate what is happening or what exactly feels bad.

I didn't want to forget to write about my lesson in faith like a child that I mentioned earlier this week. Ellery brings home a Bible memory verse each week and is expected to recite it to her teacher on Friday. This past week's verse was, "Hear my cry, O God, listen to my prayer" Psalms 61:1. We talked a little about the verse on Monday and then decided we would pray for something very specific this week. I asked Ellery what she wanted to pray for her and she answered, "Price." We pray for Price obviously quite a bit in this household and I wanted to make sure and let her know it was okay to pray for something different, or even something that had to do with her. She said no, that she wanted to pray for Price and that she was going to ask the Lord to let him talk. I am ashamed of this, but my initial thought was to ask her to pray for something a little "less big", something that I knew He would answer. I wanted to see my girl's prayers answered this week. We had been talking at home and they had been talking at school about how the Lord hears us and answers prayer...and I so wanted this for her.

We went ahead and prayed for Price to talk and I knew that this little lesson/discussion on prayer was more for me, not for Ellery. The Lord was teaching me to expect more, that I could continue to pray for the big things. That He still hears me and that He still answers. I "pray big" for others and I need to continue to pray expectantly for my boy.

Price didn't miraculously talk this week, but we can still hold onto the hope that we will one day hear his voice. There really is nothing I want more for him in terms of ability. Sure, walking would be great, better than great. But, to hear his thoughts, his dreams, his perception of the world...that would be the greatest. I could never hear too many "mamas" from my sweet boy.

Speaking of saying "mama", Streeter turned 11 months on Saturday. Goodness, he's a handful. He makes us laugh, keeps us on our toes, makes us crazy, keeps us smitten...all at the same time. He now walks way more than he crawls. We have a walker. What a gift!

He loves to sit in what we call a "catcher position" and has a thing for wires and anything electrical. At the lake this past weekend, we found a remote control in the bath tub and Ellery's hair brush in the trash can. Did I mention he's a handful?! We love our little brother.

Some pictures

2011-09-06T19:58:00.004-05:00

It's football season and that means many trips to Austin for our family. It's so fun. The kids love it and we get to see family friends that meet up with us each year at the games. This year is a little crazy because I am chasing a certain almost-11th month old everywhere (yes, he's walking...that's a whole other post though), and Price wants to pull up on everything, climb the stairs, and slide down the stairs face first. As you can imagine, I saw exactly 0 minutes of the game.
We love Lulu.
Crazy picture but our gang is obviously on the left and Elin and Lincoln are on the right. They belong to family friends we've known since we were babies. Elin and Lincoln's grandparents have two girls, Paige and Megan, who we took almost every trip with when we were growing up. These two cuties belong to Megan, and Paige has two adorable boys that couldn't make the game. My sister, Paige, is named after this Paige. (Are you still with me?) Elin and Ellery are really close in age and they just pick right back up where they left off each year. Lincoln is a couple months younger than Street. I can't wait to see the little friendship develop between these two boys.
Love this picture of Lulu and Price. His cheeks are smiling!
On the way to Austin. All three fell asleep at the same time. I am pretty sure this will never happen again.
My little helper.
Devouring an entire chicken finger with gums only. No teeth yet.
The new swing that Lulu bought us for our front yard. I love it.
First day of a new ballet year. She is looking so much older in this picture.

Some posts I hope to get around to this week involve disciplining our middle child. Can you believe it? And, a lesson in childlike faith I received from our first born. Stay tuned.

Price's day

2011-09-01T20:45:00.002-05:00

I love these three pictures of Price at his birthday party. You can just see the happiness on his face.
His own gluten/dairy free cake!
The pinata was his favorite part of the party. I had no idea he knew what to do with it, but he did!
The night of Price's real birthday, we took him to the pool for some swimming and dinner.

I loved that P went to bed that night feeling so loved, special, and happy. It was just an all-around awesome day for him and for us. When we were all praying for Price at bedtime, Nathan said something I will never forget. He thanked the Lord for placing Price in our family. He thanked Him for choosing us to get him, and not someone else. He thanked the Lord that he is ours! (And I couldn't agree more!)

Happy 3rd Birthday, Price!

2011-08-29T11:55:00.002-05:00

Dear Price,

Today you are 3! I can't believe it. You woke up today so happy, which is pretty much how you start everyday...with a smile on your face. I came into your room singing "Happy birthday to you..." and your face lit up! You know it's a special day, and you love the extra attention. Your therapists threw you a party this morning and your teachers and classmates have one planned for today. When I dropped you off at school, there was a huge sign announcing your birthday. You are one adored little boy.

We celebrated your birthday last night with just a few close friends and family. You get a little overwhelmed in huge crowds so we kept it simple. Everyone that gathered at our house loves you so dearly (and there are many others). We joined hands in prayer and thanked the Lord for your life. We thanked the Lord that He made you just the way you are. You are His perfect creation.

Price, in your 3 years on this earth you have brought Him so much glory. You are the hardest working 3 year old I know. You are persistent, determined, joyful, observant, patient, and content. Oh, and you are funny. I love to get glimpses of your humor. You have brought your mama more tears than she thought imaginable, but so much more joy than she thought possible. You have taught us more about the Kingdom of heaven and the joy and freedom that comes from knowing that this world has nothing for us. Because of you, our family means more. Things that once mattered to us, matter no longer. You teach us to observe and take in the simple things that we once overlooked. You lead the way in helping us to love others deeper and better.

Thank you my sweet boy. The Lord had such great plans for us the minute you were in the picture. No, they are not what we thought or what we thought we wanted. But they are that much better. Keep doing your thing, Price, and we will be fighting for you, loving you, and praying for you the entire way. You are mama's little light....my star!

Love,

mama

Price in action

2011-08-23T13:59:00.004-05:00

Price starts back to school tomorrow. I spoiled him on his last day at home and we watched about four episodes of Blue's Clues. I think he's ready to get back to the routine of school and see his sweet teachers and friends.

Here are a couple pictures that were taken at his school last year. One of Price's classmates has an aunt who is a professional photographer. Nice!

Lis Purdy Photography

Today

2011-08-20T13:41:00.005-05:00

Maybe it's the start of a new school year or maybe it's the fact that Price is turning 3 a week from Monday. Maybe it's that Nathan has been out of town for a few days or that we are trying to figure out our new schedule or that P will not be promoted to a new Sunday school classroom for the upteenth time tomorrow. Maybe it's a lot of little things, but this past week I have been feeling a little gloomy. Not down in the dumps or anything, but just occasionally down. Usually, when I try to pinpoint what it is I am feeling, it has to do with Price. It's never P himself, just usually something that is a result of his developmental delay and all that goes with that.

I never once imagined we would be here at 3. In fact, no one really did. Every doctor we met or therapist we consulted with thought he would have a little residual delay at 3, but be well on his way to catching up to his peers. It seems that most stories I hear or read about involve doctors telling parents that their child won't do this or that and the child later goes on to completely disprove the doctor. That's just not our case. Price is doing just the opposite, at least according to the initial thoughts of the doctors we consulted with at the beginning of this journey. (Lately, it seems we hear less and less of the positive.)

I struggle with being hopeful and believing in Price's complete healing and then not getting my hopes up, so to speak, too much. It's tough to balance. I don't want to set myself up for disappointment. I think I am trying so hard to guard my heart from just exploding at times.

Yesterday, I made a call to put Price on a list for medically-dependent children that will help pay for long-term care, equipment, etc. in the event that you might need them. No, we don't need this now, thank God, but the future is so uncertain I decided to just get him on the list. Supposedly it takes up to six years for one's name to come up, so it's just me being extra prepared for the what-if's. For the future. In my greatest dreams, the agency calls me in six years and I am able to speak of the miracles that have taken place in our boy's life. I won't even write about my worst dreams.

I was talking to Nathan about all of this the other night and just telling him how fragile my heart is concerning all of this. I promise my husband just gets wiser and wiser because he usually knows the right reply, whether I like what he has to say or not. We discussed how we have today. Only today. Today, we know where Price is and what he's doing. Today we know that he is making progress, although it is so painfully slow. Today. Not a minute from now, not tomorrow, not 6 years from now. And the Lord's grace is sufficient for today. It is so very sufficient, my friends.

Ellery and I watched Soul Surfer during the boys' nap time yesterday. I highly recommend it. She later asked me if the Lord healed the girl's arm that was bitten off by a shark. She said, "God will let it grow back. He heals us." I had to tell her that yes, Jesus heals, but some people don't receive their healing this side of heaven. I could tell that she was a little perplexed and then she turned to Price and asked if he was going to be healed this side of heaven. I had to tell her I don't know, but that He always does what is best and good and what brings Him the most glory. She looked a little sad, then said that she did not want Price to not be able to run and talk and play with her his entire life. Hard lessons for a 5 year old. Hard lessons for a mama.

Sometimes I think it would be easier if we just had a diagnosis. It's not that a diagnosis means a whole lot, but it means something. It would give us an idea of what the future might hold for our boy. It would help us prepare. It would help us to have an idea as to why.

But, then I remind myself we have today, and I want to seize every moment with my almost 3 year old. I want to hold him tight in my arms, be his legs when he needs them, kiss on his cheeks and ears over and over, forget about all the cannots. I want to love him so very well TODAY.

I don't have an awesome ending to this post or a great way of wrapping it up. I do know that the Lord's not done with Price's story and we can choose joy despite our circumstances. And I do know that His grace is and always will be enough.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:9

1st Day

2011-08-17T14:26:00.005-05:00

We all woke up a little earlier this morning.Ellery requested chocolate chip waffles for breakfast.
She got dressed and posed for the camera.
Showing off her new back pack.
Photo with dad.
Photo with mom.
And she's off to her 1st day of Bridge in her new school and new classroom.
An old friend and a brand new one.

It's going to be a great year.

Last night, Nathan took Ellery on a back-to-school date. We went and picked out a cross necklace the night before for him to give to E. Our friend, Kay, had done this with her little guy and we loved the idea. Nathan told her that the necklace means two things. Number 1 is that the Lord is always with you. And number 2 is that mom and dad love you very much and you can tell us anything.

Sweet way to start off the school year.

Sun Valley Part 2

2011-08-13T14:08:00.003-05:00

The girls in front of the Stanley Baking Company. Yum. I have been dreaming of it ever since

Our trip to Red Fish Lake was so fun. It's a lake with a beach that is completely surrounded by the mountains. Mountains with snow on top of them! It was Street's first visit to the beach and he loved it.
He was a little unsure about the cold water.

Nathan almost made it to the other side of the lake on this without falling off.
I love these boys. We talked the entire time about what Price would/wouldn't like and what he'd be doing. We know him so very well.

Unfortunately, the kids both caught a stomach bug the night after the lake trip. It was Street's first little bug. Bless his heart. He was being so sweet and STILL and it blessed me. He would look at me with those big brown eyes and then just lay his head on my shoulder.

The last day of our trip we just took it easy and let the kids ride while Nathan and I biked the beautiful trails.

We truly can't wait to return to this charming place!

Now...back to reality and school, which starts for Ellery on Wednesday and Price the following week.

I am thankful for a summer of fun, rest, play, and lots of quality time with the ones I love.

Sun Valley Part 1

2011-08-13T10:58:00.005-05:00

This post contains a crazy amount of pictures, but I had to properly document our trip to Sun Valley, Idaho. We were over at some friends of ours house a few months ago and they started talking about their annual trip to Sun Valley. It peaked our curiosity and the more we looked into it and talked to them, the more we decided a family trip was just what we needed. We thought and talked about how we would do the trip and eventually came to the conclusion that one of the boys needed to stay home. And Street got the bid to go since he's still nursing. While it was difficult leaving Price at home, we knew he would have so much fun with his Aunt Meredith and Lulu and Poppy...and he definitely did. He was spoiled with lots of attention and Chick-fil-a!

We did a little hiking on our first day in SV. The weather was unbelievable and the mountains were breathtaking.

This is Ellery and her friend Lillian. Lillian's family had been up there a week before we arrived and since they have been going to SV for a few years, they were able to give us all the insider scoop.
We hiked 4 miles to get to this beautiful lake. We were so proud of E...she did the entire hike by herself without complaining once. In fact, Street didn't complain either. He rode in his backpack like a champ, babbling the entire way and pointing out dogs and things that resembled balls. He is a mountain man, I have decided.
The next day we rode the gondola up to Bald Mountain and had lunch at the top.

It was symphony week in SV so each night people would gather on the lawn to listen. We packed picnic baskets and the kids loved being outdoors and running around on the grass. I had to pinch myself. It was like something out of a movie.
There were these two beautiful horses on the main rode and every time we biked past them, we had to stop. Absolutely beautiful.
We rented bikes and rode into the little charming town of Ketchum. It was so nice not having to load up the car every time we wanted to go somewhere.
Street had his first taste of ice cream at the town ice cream stand. Delicious!
He also had his first taste of spaghetti, which was probably not our most brilliant idea. People were looking at us like we were crazy. Spaghetti everywhere.
Our last night we took a wagon ride to dinner. This is our only family picture. Thanks E!
E and Lils on the wagon ride
I just thought this picture was sweet.
Back tracking a little here...this is at the restaurant at the top of Baldy.
Nathan and Ellery went ice skating. Ellery is so eager and willing to try new things, but she definitely is cautious. We laughed at how she was more like ice scooting. I think if she could do it a few more times, she would definitely get the hang of it. She said that ice skating was her most favorite thing we did.

My favorite day. We drove to Red Fish Lake, which is about 45 minutes from SV. We drove into Stanley first and had one of the best breakfasts of my life. There is NOTHING in Stanley, but tons of people flock to this breakfast joint. Absolutely delicious.

To be continued...

10 months

2011-08-10T22:01:00.005-05:00

We got back today from a trip to Sun Valley, Idaho. We had the BEST time and weren't quite ready to be home in the Houston heat and humidity. I will work on posting pictures this week.

But, while we were in SV, Streeter turned 10 months old!

At 10 months, Street...

- took a few steps on his own while we were away!

- has some new words - dog, ball, bye-bye, no-no, more, and night-night

- he thinks every animal is a dog and loves to point them out

- is becoming more and more happy and content and might be losing his nickname "Rager" in the near future

- has expanded his food groups (He ate icecream for the first time on our trip and spaghetti.)

- loves to put things on his head?

- will point it out if you have something on your head, even if its just a high ponytail

- is easily our much-needed comic relief

I am loving his age. We forgot what it feels like to hear new words and see new movements every day. It's a beautiful thing.

P.S.

2011-08-02T13:57:00.004-05:00

{Price got really excited about some cars on our date to Costco yesterday}

I was thinking about my post yesterday and realized that I left out one huge piece of information. We went to Duke a few months ago and had Price evaluated by a team of doctors. He had x-rays, blood work, an EEG, more blood work, urine tests, and an MRI. We were told that his imaging from Texas Children's was pretty poor in quality. I find this so odd because we are all told that Texas Children's is one of the best in the country. Anyway, we had his MRI done on their top notch equipment and his results were normal. No atrophy, no other findings that were out of the ordinary. This was such encouraging news to us, although it definitely had us puzzled. We will give all the glory to God.

Right now, Price does physical, speech, and occupational therapy two times a week. He also attends a special needs school where he receives more therapy. He is in a class with 4 other kids and has 3 teachers. His school has been one of the best decisions we have made for him, even though it was a tough one. We have seen the Lord go before us on this journey and give us just the thing we needed at the exact time.

Price is on a special diet and we also do lots of supplements. We see a chiropractor/wellness doctor who has done so much not just for Price, but for our entire family. It's a fun story how the Lord led us to him. I can share more about him and our experiences in upcoming posts if anyone is interested. Our ways have definitely changed and it's been a blessing.

My Price

2011-08-01T14:22:00.006-05:00

I thought I would back up here and tell a little about Price's journey thus far. I've explained a little in past posts, but I wouldn't blame you for not wanting to go back and read our entire blog. I find when I am reading a blog, I love to get some background information.

Okay, so Price was born August 29, 2008 after a healthy, 40-week pregnancy. He weighed a solid 7 lbs, 12 oz and we brought him home from the hospital a couple days later. He was (and still is) a good eater, a good sleeper, and just overall a content, happy little guy. He was doing all the things we thought a baby should be doing..smiling, cooing, etc. Nathan and I have tried to remember if he was doing what Ellery and Street were doing at such-and-such age, and the truth is that it is all very fuzzy. We weren't looking for something to be "wrong" with Price so we just assumed we had a laid back, healthy baby and counted our blessings.

Around 4 months, Price's head circumference shot up in percentiles big time. It went from like the 60th percentile to the 99th percentile. I mentioned it to the pediatrician and he wasn't too concerned (Ellery's head is larger than average and Nathan's family has some "big brains" in it). I also mentioned to our pediatrician the fact that his head seemed to "bob" more than it should. His head control just did not seem appropriate for his age. I was again reassured that boys are slower than girls and that Price was just fine. To reassure me, the pediatrician sent us to get a head ultrasound. According to the ultrasound, Price had something called "benign external hydrocephalus". Basically, it means his head is large and to fill the extra space there is some fluid around the outside parts of his brain. The doctors assured me that it is benign and that he might have some minor motor delays but that's it. It would resolve on its own. Phew, we were relieved.

Call it mother's intuition but I wanted to see a neurologist anyway. I also noticed around this time that Price's eyes didn't always seem to move smoothly. And sometimes his eyes seemed to roll upwards, almost like he didn't have control over them. We saw two pediatric neurologists around 5-6 months who took one look at Price, and told me that he was going to be fine. His head was big because his daddy's head was big and his eyes, well, he just didn't have full control over them yet. It would come. We were once again relieved and thankful, but only for a little while.

At 6 months, Price starting wearing a helmet because of his right-sided plagiocephaly. He always turned his head to the right side and this combined with sleeping on his back at night, had given him a funny-shaped noggin. Price wore his helmet like a champ and we saw some improvement in his head shape. I say that now it is evenly flat instead of just flat on one side.

All this time, I took him to the pediatrician A LOT! Is there something wrong with his eyes? Why does he still bob his head? Why can't he sit up at 7 months or even roll over? But again, I was reassured he was just slow. And reassured that the neurologist would not have sent us on our way if there had been an issue. I really felt like a paranoid mom. Our pediatrician told us we could start physical therapy if that would make me feel better.

We started physical therapy with Price at about 8 months, and our wonderful PT Irene diagnosed Price with torticollis. His head easily turned to the right, but had a hard time moving to the left. We saw her twice each week and were hopeful that Price would catch right up to where he needed to be. Around 10 months, I sought out speech therapy on my own as well. Sure, boys might be slower-to-talk than girls but Price didn't even put his lips together to make sounds. Something was just off to me and I figured the earlier we intervened, the better.

I also called our neurologist a few times, even after he said he wouldn't need to see Price ever again. I was just so worried about his eyes. One day at our pediatrician's office, we had to see a different doctor and she commented on them right off the bat. It was a horrible comment that to this day makes me upset, but she noticed and I felt like I was somewhat being validated. Our neurologist lined up an EEG to check for seizures, and they were ruled out.

I decided to take him to a neuro-opthamologist to put my fears to rest about his eyes. The doctor we saw diagnosed him with a downbeat nystagmus and said she thought he had a Chiari-malformation. She said we needed an MRI to rule this out. Just typing this makes my heart beat a little faster. I remember the sadness, the guilt, the reality that something was wrong.

His MRI was negative for a Chiari-malformation and the cause of his nystagmus was unknown. Price's eyes would bounce and then sometimes roll up, but not all the time. Sometimes his eyes would be perfectly steady and he would look us straight in the eyes. It sounds crazy, I know, and I am pretty sure a lot of the doctors thought I was making this up. His eyes were worse when it was really sunny outside or when he was eating. I remember not wanting to open his windows in the morning to let the light in. Oh, the sadness.

I googled and googled and googled. I found something called Paroxysmal Tonic Upgaze which described Price's funky eye movements. I learned as much as I could. I sought out doctors in Australia who were the first to describe this disorder. I found other mothers whose kids had been diagnosed with this. PTU was on an episode of Mystery Diagnosis and you may have happened to see it. Price does fit the definition of PTU but it still doesn't explain his developmental delay.

At Price's one-year check up, he was still not sitting on his own, had not uttered one word, and would not bear weight on his legs. Finally, the pediatrician agreed it was time to get more serious. He wanted us to see the neurologist again. We also saw a geneticist around 15 months who did several tests on Price, all negative.

Pretty much every test Price has undergone has come back negative. This last MRI we did on him showed a couple of findings (slight atrophy of the cerebellum) but so far no diagnosis has been confirmed. The only diagnosis at this point in time is hypotonia (low muscle tone) and developmental delay.

We have ruled out all types of genetic disorders, metabolic disorders, chromosome abnormalities, and ataxia disorders. We have also ruled out some degenerative disorders, which were by far our worst fear.

So, there you have it...a short version of our journey minus the tears, the prayers, the questions, the hurting...all the emotion. Price is now a month shy of 3 years old. He doesn't walk or talk. His eye movements are much better. They don't bounce like they used to and only occasionally roll upwards.

Price DOES sit up, army crawl, climb stairs, and pull up. He knows some sign language as well. He is able to communicate his needs and wants pretty well. He also smiles, laughs, and loves VERY well. Oh, and he has some of the clearest, prettiest blues eyes I have ever seen.

A recipe

2011-07-30T20:55:00.001-05:00

We are figuring out how to do things gluten and dairy free over here. With two of my boys (Nathan and Price) sensitive to both, it's just better for everyone if we do most of our meals this way. Don't get me wrong, Ellery and I love us some bread and cheese. But for the most part, when we eat at home, I try to cook something we can all enjoy.

The kids (and Nathan) are on a waffle kick. And it's something I can prepare beforehand and make in a few minutes in the morning. (Which is a good thing because Price is out the door 3 mornings at 7:30am.)

Our waffles:

1 Cup Gluten free baking mix (we use Pamela's Baking and Pancake Mix which I bought at Wholefoods. I am sure there are others that are similar.)

2 eggs

3/4 cup water

1 tbsp oil (we use grapeseed oil)

Pour into a waffle maker and you are done! So easy! We usually double the recipe and put it in this handy bottle and into the refrigerator for another morning.

The bottle is actually a cupcake mix pourer. My mom bought it for us and I found it so handy for our waffle mix instead. It has a little spout that you can't see in the picture.

Casts

2011-07-29T14:42:00.003-05:00

We survived the casts this week! Price had casts put on by his PT on Monday and did great. He was so still during the casting process which was a huge blessing. He ate about 5 small packages of gummy bears and was a happy boy! I can't (and don't want to) imagine Street having to do the same thing.

At first, I don't think Price really cared too much about having them on, but then by the evening I could tell he was getting a little annoyed. But, like everything else Price has been through, he took it like a champ and found a way to get around despite the heavy stormtrooper boots he was wearing. (Ellery decided that they looked like stormtrooper boots and we kept telling Price how cool he was with his boots on.) We even let Ellery decorate them.

His casts will be made into boots that he can wear during PT to help him with his standing.

We are praising God that this is a step in the right direction...forward!

Blogs

2011-07-27T14:48:00.002-05:00

I have come across some really good writing on disability. John Knight is the Sr. Director of Development at Desiring God, a ministry of John Piper's. He is the father of a son with a disability. He also writes for the Bethlehem Baptist Church disability ministry. Check it out here.

A few weeks ago he had a link to Justin Taylor's blog post, for The Gospel Coalition. It was a letter to a mom thinking about terminating her pregnancy because of a genetic condition that was discovered in utero. The letter really resonated with me. We never had one ultrasound that indicated that Price was anything but perfectly healthy and "normal". My pregnancy was a textbook one and delivery for that matter was too. I am thankful that we didn't have to go through what most likely would have been a scary pregnancy with all the unknowns and what-if's. I have friends that have discovered that the baby they were carrying was either most likely not going to survive at birth or was not going to be a "typical" developing child. They all handled the news with a grace and strength that I admired.

I love this letter to this mother especially because of what it says about suffering.

"It seems to be a foregone conclusion in our culture that preventing suffering is the highest goal, but I think we lose sight of the fact that sometimes in our lives the greatest blessings come to us after we have gone through the greatest suffering."

I can't imagine our lives without knowing the pain and joy that has come with being a mother to Price. The things that society would deem as imperfect in Price have become the exact qualities I cherish in our son. The so-called imperfections in my children are what make them who they are and that's a beautiful thing. It's definitely not all rosy all the time and I'm not trying to paint that picture. I have moments of sadness and wanting so badly for things to be easier for us and easier for Price. But, we can praise the Lord in it all.

{Another great blogger is also the father to an adopted son with a disability, Greg Lucas.}

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” John 9:1-3

Unloading the phone...

2011-07-23T13:58:00.005-05:00

Price is working hard as usual at therapy. He is doing PT three times a week for the month of July. He had orthotics made that fit inside his shoes that will help his feet to not be so flat when he stands. The shoes that work the best with these new orthotics happen to be Air Jordan high-tops! He is also being casted on Monday for feet/ankle casts. I am not sure what the finished product is going to look like, but trust our PT, Irene, to make the right decisions for Pricey. He will wear the casts on both feet Monday through Wednesday and then get them removed. And as I understand, the casts will then be made into orthotics to give him extra support.

Eventually, he will get the more common orthotics (called AFO's) that will go up to his calves. Irene says that if he gets these now, it could cause some muscle atrophy. I don't even like typing that word atrophy. It's a bad word in our house.
Ellery is conducting class for the boys. She gets frustrated because they both have very limited attention spans. Street has started standing all by himself for about a minute at a time. It's pretty incredible to us.
We do this many, many times a day. As soon as I want to complain about not getting anything done, I remind myself that we are thankful Price is climbing the stairs. It's pure joy to see his smile when he accomplishes his goal and reaches the top. He is getting better everyday. I just have to be by him in case of an accidental fall backwards. His balance just isn't the greatest.
Looking like daddy. Climbing the stairs with a messy face.
We visited the Children's Museum last week. This is Ellery in Mexico I think.
And a couple weeks ago, we participated in Houston Project with our church. Ellery attended a VBS while Nathan and I "worked". My job was running the snow cone stand. Not sure how that really impacted the Kingdom of God but I did love seeing and talking to the little ones who were so excited about a snow cone. Oh, and Ellery thought my job was seriously cool.

Ellery had a hard day yesterday and we were talking about our hearts. She busts out with a great analogy. She said something like - Adam and Eve had white hearts until they disobeyed God by eating an apple they were not supposed to. Their hearts then turned black. Then, Jesus came and died on the cross for our sins. His red blood washed our hearts and turns them back to white.

She had learned this from her VBS teacher during Houston Project. I love that she hid that in her little heart and was able to tell me about it a few weeks later.

Well, that's our last couple of weeks in phone pictures! I am hoping to sit down and blog more next week! Have a great weekend!

A visit to Big D

2011-07-18T09:04:00.002-05:00

I just got back from a mini-vacation. Street and I went to Southlake to keep my sister's little girl, Piper, while her parents went to a marriage conference at their church. It was so relaxing, and would have been close to perfect if Street would have actually slept at night. He was up every 4 hours every night eating. It felt like we had reverted back to newborn territory and I am hoping it was just the unfamiliar pack and play, and that we get back on schedule now that we are home. My mom came too, and we ventured out and explored the Southlake Town Center and even Ft. Worth! My mom spoiled the kids with some adorable new clothes that will be perfect for the fall. I loved getting to love on Piper and also loved getting to give my undivided attention to Streeter. One is a breeze! I wasn't sure what to do with myself and my free time.

Nathan took Ellery and Price to Arlington to stay with his parents at their new casa. While mom was away, they had a great time checking out places like Legoland, the Aquarium, and the Ft. Worth zoo. Ellery had Bebe doing multiple art projects and Price was busy exploring and climbing stairs at their house. Yes, he's stair climbing. There is a lot of grunting and hard work, but he manages to make it to the top! And when he reaches the top, he turns around, looks at us, and smiles so big. He's so proud of himself! This boy is not lacking in determination and perseverance, thank the Lord! Price also decided to throw his shoe out of the moving train at the zoo over the weekend. It wouldn't have been such a big deal, but these brand new shoes have brand new orthotics in them. Nathan had to reach out and grab the shoe on the train ride back. Dad saved the day!

After our car ride home tonight, I have vowed not to drive to Dallas ever again until it's bedtime. Our littlest guy had a rough ride home. And that is an understatement. To give him a little credit, he did miss all of his naps today, went to a new church nursery, and was up "partying" the night before around 10:30pm.

I was able to meet up with my dear friend LeighAnne while in Southlake, and it was so much fun to get to catch up. We both have added two more kids since we last saw each other. I met Leigh on bid night in college and she has proven herself to be one of the most loving, fun, down-to-earth, and laid back girls I know. And she just happens to live about 3 minutes away from my sister. I am a little jealous!

A highlight of our trip was reuniting and attending Bebe and Pop's church, First Baptist Arlington. It was wonderful getting to meet so many of their friends and church family. I appreciate every one of you who went out of your way to make us feel welcome, help us with our "unique" childcare arrangements, and speak such kind words. Bebe always tells me that so many of her friends and fellow church members are praying for us and specifically for Price, and meeting some of you just meant the world to me. Thank you from the bottom of my heart. I truly hope our church treats visitors the way that you do! It really made a lasting impression on me.

Our phone pics from the weekend:

9 months

2011-07-09T20:29:00.008-05:00

I remembered about 5 minutes before bedtime that we needed to take Street's 9 month pictures. Month 8 got away from me...oops. Here's what Streeter boy is up to:

At 9 months Street:

- is still very bald and toothless

- is taking 2 really good naps

- is sleeping through the night for the most part but still wakes up to nurse usually right about when my head hits the pillow

- crawls everywhere

- pulls up everywhere and started climbing the stairs

- will eat anything and I can't count the amount of times I have to swipe things out of his mouth that he picks up off the floor

- claps, still does his touchdown trick, dances, and loves to blow raspberries (especially when he hears a similar sound...like for example when E let out a little gas the other night)

- has to be pinned down to get his diaper or clothes changed

- loves to be on-the-go and literally never stops moving

- says mama, dada, baba, nana, and other amazing baby babble that blows me away

- keeps life interesting and fun and crazy all at the same time

This past month we have been amazed at the way Street and Price interact. Street will do something and Price will watch him so closely and try to imitate him when it comes to standing up or crawling. It breaks my heart a little to watch Street do something so effortlessly (like climbing the stairs...he decided to do it and he did on the first try) and then watch Price work so hard and struggle to do the exact same thing. Nathan always reminds me that Price does and will do things that Street can't and I know this, but my mama's heart still aches at times. Still, Street developing so typically is just a huge blessing and we are thankful. It has been somewhat healing for me to watch and care for him and just enjoy him.

Happy 9 months Street!

A new do

2011-07-08T13:44:00.006-05:00

Ellery saw a friend at church with a cute, short haircut and asked if she could get something similar. I thought she would just forget about it, but that's all she asked about Monday morning. They had an appointment that day and she was so excited! After her hair was cut she exclaimed, "I feel like a whole new person." She told me she wanted to send her ponytail to kids that need hair. I checked into Locks of Love and it says the pony must be 10 inches, and I am not sure hers is quite that long. I might just send it anyway.

I must say it has made swimming and showering and getting ready in the morning a breeze.

(these phone pics aren't awesome...I must be the only one in town who still has the old I-phone.)

The 4th

2011-07-05T09:27:00.003-05:00

Some images from our 4th photo session!

the twins

cousin time!

price is not digging this...he'd rather be on the boat

street, on the other hand, turns on the picture-taking charm

sweet sweet piper lou

Hope everyone had a wonderful 4th! We came home last night and watched the downtown fireworks from our car, which was a treat. (We weren't expecting any with the Texas burn ban.)

Funny faces

2011-06-30T17:37:00.003-05:00

This little dude makes us laugh...a lot!

Determination

2011-06-23T10:55:00.002-05:00

I am pretty sure this is what determination looks like.

Rainbows and Unicorns

2011-06-21T19:26:00.007-05:00

This post is picture overload. We celebrated Ellery's 5th birthday with a rainbows and unicorns party. I seriously did not plan in advance for this and basically put it together the night before with some help from my mom. It was so very simple but E loved every minute of it!I set up two little tables with white butcher paper and crayons. I also had princess necessities scattered on the table. Tiaras, rings, wands, and rainbow ribbon.

Street loved all the action.

Ellery picked out all the utensils and paperware.

Candy overload!

The girls loved the pinata! Oh, and Lulu made the paper pom poms!

Ellery requested the games...pin the horn on the unicorn and hot potato.

The birthday cake was made by friend Shanna.

Surprise!

Madi Kate and Ellery

Lulu also made the wreath! She is getting craftier by the minute. And the sign is by the talented Casey Wiegand.

The girls took home unicorn lollipops and the goodie bags below, full of all things rainbow. Rainbow mirrors, hair rubberbands, lip gloss, fingernail polish, and stickers! The plate was made by me.

5 year old letter

2011-06-19T20:34:00.005-05:00

Miss Ellery Paige,

You are 5 years old, a whole hand now. It just can't be. It seems like yesterday it was just the 3 of us, and now you are the big sister to two brothers. I love you so very much.

You finished preschool and are heading to Bridge next year. You love school and are excited about a new school and new friends. You have always been up for trying new things and meeting new people. You just jump right in most of the time, something I love about you. You have started reading a little. In fact, you read the words "Six Flags" off my coke can the other day in the car. You also read a couple of street signs. I know you are going to love being able to read because you adore books. Your world is going to open up, my dear!

You have been quite a big sister to Pricey. You know that Price is unlike most 2 1/2 year olds, but you rarely bring it up. You know he is special and you pray for him with a boldness and faith that mommy admires. You also love on his friends at school. You don't see the disabilities, only the child. This makes mama so very proud. I wish everyone could see others through your lens. You asked to sleep with him on your birthday. You told me he woke up the next morning, stood up in his crib, looked you in the eye, and said, "Hey."

You told me that if you could give one brother away it would be "Rager" because, well, he rages too much. I have a feeling that you two are going to be best of buds and you will be such a good teacher and leader. He may not have been the sister you prayed for, but the Lord has given us just what we need and you haven't skipped a beat. You are such a helper to mama. I really don't know what I would do without you. I often have to remind myself that you are only 5 and still such a baby yourself.

You love art and making crafts and you have become quite a good little drawer. You still like Star Wars and watch it with your dad every once in awhile before bed. Your dad has also taught you recently about Michael Jackson and you are loving jamming out to "Beat it" and "Man in the Mirror." You love your dad and declared yourself a daddy's girl tonight at bedtime.

You have such a sense of justice and fairness that it gets the best of you sometimes. I must say that is a trait you have inherited from your mother. You also have a tendency to like things "just so", and once you get your mind set on something, it's hard to talk you out of it. Again, this is from your mother. Life is going to be a little harder because of these traits, but the Lord will use them for something great.

You have started really understanding about heaven and sin and the reason that Jesus had to die on the cross. You amaze me with your ability to grasp these truths. You love Jesus and I am praying that this love only grows as you get older. I tell you often that the most important thing in life is that you love Jesus and follow Him.

If I had to describe you in one word, it would be "life". You have so much life in you. You love learning and exploring and are full of questions and thoughts. You love your friends and your family with all your heart.

I love you so very much and look forward to your year as a big 5 year old. I always tell you that if I had to go around the world and pick one girl to be my daughter, I would choose you. Every single time, I would choose Ellery!

Love,

mama

Warriors

2011-06-18T22:42:00.007-05:00

A couple days ago I ran into a mom at therapy whose daughter has some similar delays as P. She stopped me in the parking lot and we talked a little about schools and therapy and then she told me her daughter had another MRI. There were new findings and the doctors were more perplexed now about a possible diagnosis than before (if that is even possible). She told me she hadn't told anyone because it was just so awful and hard and no one would really understand. But that she knew I did.

Someone pinch me. When did I start understanding this hard stuff? This world of unknowns involving our most precious, treasured children. When did I start grasping the grief process that occurs when you realize your son or daughter is not developing like a typical child? Or the mourning that comes when hopes and dreams for your child start looking a little (or a lot) different.

Then today I saw another sweet friend also walking this road of special needs. She was down about something a therapist had said. As she talked, the tears starting filling her eyes. My own eyes watered as I listened and sympathized.

These moms are heroes. The lengths they go to advocate for their children, the paperwork and processes that have so many loopholes and are terribly time consuming, the therapies, the doctor's appointments, the research, the never ending list of to-do's and feelings of they could be doing more. I could go on forever. I have come to love not only these special kids but the moms that are their warriors. It's like an instant connection and understanding - a club we all belong to but wish so badly we didn't.

Oh Lord, help us. Pray for us. Being a mom is hard enough when you have typical children but then throwing in all these "extras" is crazy hard. I don't know what I'd do if it weren't for the hope I have in Christ. Knowing and believing that my life is not my own makes this journey
bearable, even joyful. I repeat in my head multiple times a day, "for the glory of God." When I'm giving P his tackle box full of vitamins for breakfast, lunch, and dinner plus the 6 syringes of intestinal cleanse we shoot down him every single night..."for the glory of God." When I'm frustrated we can't just be spontaneous because of P's motor challenges and special diet..."for the glory of God." When I'm struggling with desiring a more normal life (whatever that means,right?)..."for the glory of God." And when I am feeling down for P and what I think he's missing out on..."for the glory of God."

Now, I am so aware that we just have a taste of special needs. We have only scratched the surface. So many moms and dads live out our lives plus so much more. They probably look at me and think I don't even have a clue.

I will forever be committed to these families that have been blessed with special children. Children that were wonderfully made in the image of their Creator. Children who I'm convinced know more about the Kingdom of God than we do. I always tell the Lord that no matter what Price's life looks like, I will care for and love on these children. I will pray for and care for the families. They must see Christ. I beg the Lord to heal our son and to give us wisdom concerning His care. I tell Him that no matter if He grants our requests or not, we will use this trial to glorify Him forever.

{And not to leave Nathan out on this Father's Day. He had some pretty tall shoes to fill when it came to being a father because my own dad was and still is the very best. But, I must say he's surpassed my expectations. He was made to be a father. Just the other day I overheard him telling P to crawl to him (as opposed to roll as we are trying to discourage it now that he is moving forward). When Price reached him, Nathan threw him up in the air and declared, "Good job, bro-bro. You are my strong boy." I am blessed to be on this journey with my best friend. He's one amazing dad.}

Staring

2011-06-16T21:35:00.004-05:00

Lots of fun things to blog about. 8 month milestones, 5th birthday party, trip to Austin with friends, but I think this takes priority. While we were in Austin, Nathan called me to come look at Price as he was getting him from his crib after nap time. Price was standing up in his crib when Nathan opened the door. This is the stuff we dream about, friends. It's a moment that we have waited so long to see and a moment we will never forget. I could stare at this picture forever.

What we're up to

2011-06-07T09:48:00.007-05:00

Price is out of school for 3 weeks and sometimes I think he's loving the freedom and then other times I am pretty sure he is bored out of his mind. Today he woke up with a bloody nose, which has never happened. And Street either threw up or had a horrible spit up. I am desperately hoping it was spit up. That all happened before 7:30am, before I had to get them all out the door to take Ellery to a princess camp she is attending this week.

Where am I going with this post? I'm not sure.

Price loves Blues Clues. It's like his first real favorite thing (besides Colby, of course). How awesome that he has a favorite and we are able to recognize it. As his speech therapist encouraged me, he is talking to us, just not with words. I am trying to be more aware of what he is telling me non verbally. He has so much to say I am sure. While a lot of focus is on the motor milestones like walking, I am convinced the most awesome milestone for Price will be speech. Nathan and I talk all the time about how we can't wait to hear what our boy sounds like and get a peak into what's going on in that big brain of his.

Yesterday, the kids all mercifully slept for a couple hours at the same time and I read the book, "Heaven is for real" by Todd Burpo. I had never planned on reading it, but got sucked in with all the beautiful imagery of heaven and this little boy's miraculous story about his short trip to heaven. It sure has me thinking more about heaven in general. One of the things that really stuck with me, however, was how this little boy couldn't stop talking to his mom and dad and others about how much Jesus loves the children. He made this point over and over until finally his parents had to tell him that they got it! It made me want to love my children better. It made me want to ask the Lord how to love them like He does and see them how He sees them. They are so absolutely precious in His sight.

I am always comforted by the fact that if Price never talks or walks or does this or that on this side of heaven, that he will one day. I know I am getting ahead of myself and I am believing that Price will do all these things on this earth, but in my darkest moments I am comforted by this fact. Sometimes I am so focused on helping Price reach this or that milestone or thinking about and planning for the future with him, that I forget to just love him well. Oh, how I don't want to miss this!

This is not at all what I planned to post today.

As I came back to post this entry tonight, I thought I would add that Street has now digested a small bead from a necklace Ellery made and some grass today. My goal with my 3rd now is to just keep him alive. Keep him alive for the day and I have done well, I am telling myself.

Guilt

2011-06-02T20:03:00.003-05:00

My theme of the day..Guilt, with a capital G.
It started off with a trip to our natural doctor and it was nothing he said or did. It was just a voice in my head when we left. "You could have done this or that better and Price would not be where he is. It's your fault. Decisions you made for his care were wrong." Etc. etc. etc....you get the picture.

We got home and I had about 10 minutes to get the house straight and nurse Street before Price's speech therapist came over. He sees a new speech therapist at his school and since he is out of school for 3 weeks, she asked to see him at home. I was looking forward to getting to talk with her and watch a little of his session. She is extremely nice and I could tell, very good at what she does. She has a tremendous amount of diverse experience. She told me about the assessment she did with him to measure where he is at with speech. The word "developmental assessment" makes me want to run far away, really fast. It's like I know he is behind. It's not new information. But it hurts every time to hear it and to see it on paper. His therapist didn't make a big deal of it, just told me that she wants to improve on the 1% he is at currently. Yes, the 1%. (Good thing is he can't really get worse if I am looking at the bright side.) He has no words and he will be 3 in a few months, so obviously it's not going to be a stellar report.

She gave me a handful of things to work on...pictures to take of people, places, favorite foods, and toys, videos to watch with instruction, techniques to work on when he is at home. My mind was spinning, and really they are all such simple things. It's not like she asked too much of me. But the voice in my head said, "You don't do enough with him. You could be doing so much more. Do you even care?" Yikes.

Moving on I heard more of the voice. "All this work with Price is so unfair to Ellery and Street. They don't get enough attention. How will they ever live a normal life if you are constantly having to tend to Price and his special needs?"

Ellery's new I'm-almost-5 attitude didn't help at all. "Am I modeling this kind of behavior? Have I lost all control of my daughter? I am a horrible disciplinarian."

And further, "Poor Street. He's just on his own. It was probably totally irresponsible to have another child. How did I ever think I could handle 4 at one time because 3 is sending me to looney town."

And the internal dialogue continued throughout the day until I said, "Enough!" Guilt is not from my heavenly Father. Accusation and condemnation are the opposite of His character. I will make a choice to have faith. I will trust my days to Him, the author and perfecter of my faith. I will trust that each day He will be the one to supply me with exactly what I need to take care of these precious 3 entrusted to my care. And it will be enough. I will trust that He made each one of my kids with the other in mind, knowing their exact needs and heart. I will trust that our family was so perfectly and {very} creatively knit together.

I will also see what is RIGHT with my son, instead of what is supposedly wrong. I will look at him through the eyes of his creator. There is so much that is SO VERY RIGHT with Price.

"The God who commends and cultivates our faith will sometimes lead us into painful places, into unreasonable places, and into places that simply do not make sense. Why? Because real faith has to outweigh our emotional comfort, our human logic, and our passion for understanding. When it does, the Object of our faith has become the most important thing in our lives." {Worship the King by Chris Tiegreen}

Austin, Colby, and coke floats

2011-05-31T20:07:00.006-05:00

We went to Austin for the long Memorial Day weekend with my parents. It was a little like being on vacation. My parents are a huge help when it comes to the kids. Ellery is attached at Poppy's hip the entire time, and the boys took turns fighting over Lulu's lap.

We celebrated our 7th anniversary Sunday night. My parents kept the kids while we tried a Japanese restaurant. We let the waiter order for us (after giving him some guidelines), and we were pleasantly surprised by the food he brought us. For dessert, we had fried milk. Delicious.

Street is now crawling everywhere. One time over the weekend, I sat him down and then came back a minute later and he was no where to be seen. I freaked out a little. I am not used to this crawling thing, but I am loving it. He usually is crawling to get to me. He might be making up for all the raging he did his first months of life. On second thought, he still rages at night some. Poor thing. He is so confused because most nights I give in and feed him, and then there are some nights I can't bring myself to get out of bed and just turn down the monitor. Very inconsistent. But as I have learned, each child is on a different time table and that's perfectly okay with me. (Did I ever mention that E gave up her paci at 4 1/2?)

Our dog, Colby, went to live with Lulu and Poppy after Street's arrival. Heart condition plus a 3rd baby just did not equal good for C-man. Well, he's back and Price has won his heart. And vice-versa. They are best friends. Price spends half his day laughing at Colby and chasing him around the house. Colby likes to sit right by Price, especially when he's eating so that he can be the recipient of some good ole table food. Price bends down from his highchair and just starts belly-laughing as he hands Colby some of his dinner. It's really funny. I really believe animals are therapeutic.

Ellery has made a list of about 20 places we are going this summer and so we will be busy. Right now, she is enjoying a coke float with her dad. He bet her a coke float if she would eat some of his raw salmon from his sashimi last night and some wasabi. To both of our surprise, she did it without hesitation. I guess anything for ice cream and coke in the same sitting.

On the move

2011-05-23T20:49:00.004-05:00

It's official. Street is a crawler. He has been rocking back and forth on his hands and knees for the past couple of weeks and today he crawled about four feet to get to me.

We're in awe of everything he does. The fact that he just does things on his own is just incredible to us. We don't take a minute of it for granted.

Someone asked me if it makes me sad for Price, now that Street is going to quickly pass Price up in gross motor skill ability. It doesn't make me sad. It just makes me really want the same thing for Price that much more. And I think it stinks that he has to work so much harder than his brother and sister ever did to accomplish small milestones.

I'm also very aware of the Lord's sovereign timing in the birth of our sons. They are really working on the same physical motor skills, and it's pretty amazing to see them interact. Of course, Price still acts like the big brother, taking away Street's toys, eating his puffs, and trying to crawl in my lap if I'm paying too much attention to the baby.

This picture has nothing to do with crawling, but it's a sweet one of my brown-eyed kids!

Give a hug ladybug

2011-05-20T16:41:00.010-05:00

Ellery's teacher this year had a little poem they would say at the end of the day. It goes like this:

See you later alligator

Give a hug ladybug
Blow a kiss jellyfish
Out the door dinosaur
Farewell jinglebell
Take care teddy bear
Toodle-doo kangaroo
Bye-bye butterfly

This morning Ellery woke up to a little graduation gift. She had picked out this ladybug charm to go on her charm bracelet a long time ago, and I thought it would be the perfect day to surprise her with it. She loved it, and decided to wear it as a necklace on the last day of school.

The graduates (with cute little necklaces my friend Lyndsay made for everyone) walking out to "Pomp and Circumstance".

Claire, Ellery, and Walker
We sure will miss all of these sweet friends and their families.

They all said, "I did it!", as they let go of their balloons.

Talking to Mrs. Thigpen about the gifts they are about to give their teacher.

Handing Mrs. Wagner a rose

They all received The Jesus Storybook Bible as a gift from their teachers. (This is an awesome Bible,by the way, for little ones.)

What a great year this has been! I made it through the graduation ceremony and actually found myself laughing at the cuteness of it all. When I went to pick up Ellery at noon, I got out of my car and gave her teacher and the director hugs. It was then that I started to get a little sentimental. This school has meant so much to us and we will miss not being a part of it next year. I had visions of Ellery being at the school with Price and then Price and Street eventually attending together. As we all know, this is not the case, and I think this is the bulk of my sadness.

{I just keep telling myself, "It's all about Jesus, Kristen." And it is. Ellery's life, Street's life, our lives, Price's life. And it is because of this, I can say it's all good. This is another blog post for another day, though.}

On a funny note, I did tell the teachers today that they may want to retire after having Street in their class . He's a little more...um...let's say, energetic than his sister.

We were so proud of our first-born today {and everyday}, but today was definitely a special one!

Graduation day

2011-05-19T16:59:00.006-05:00

Break out the cap and gown, cue the pomp and circumstance...this little lady is graduating from Preschool tomorrow.

I am...

2011-05-18T16:08:00.004-05:00

I am dreaming of my boy walking and running and talking.

I am feeling such mixed emotions about E's Pre-K graduation Friday. I am sure I will cry.

I am so thankful for her four years at this sweet, sweet school.

I am wishing Price was at the same school.

I am so thankful for Price's school, though. I love his teachers dearly. Truly, they are heroes.

I am laughing about how I had to swipe a package of pacifiers from the baby aisle at HEB just so that I could make it through grocery shopping with Street today. (I did buy them.)

I am hurting for friends that are going through tough situations.

I am reading about 4 different books right now.

I am amazed at my inability to follow a recipe today.

I am wondering, though, can you really mess up chocolate sheet cake with all those good ingredients?

I am watching Street rock back and forth on all fours.

I am thinking that we are going to have to do some baby-proofing.

I am dreaming of my boy walking and running and talking. I am dreaming of his healing.

Birthday

2011-05-15T16:14:00.004-05:00

inspecting the grass
after putting it in his mouth...hmmm interesting

Saturday was my birthday! I think it was one of my best ones yet. The best part about it was that there were no real big plans and instead it was just spontaneous fun. At the last minute, I decided to take a beginner photography class with my friend Tiffany. I have so many things I would love to do better. Photography, sewing, art, you name it. I am interested in all of them, but with our crazy life right now, I barely have time to even think about the hobbies that get me excited. I started a sewing class when Price was about 7 or 8 months, but that is when life with him started getting hard, scary, and time-consuming. I was a sewing class drop-out.

So back to the photography class. I learned a lot of really technical things that still have my mind spinning. I got out today in the backyard to practice some of the things we were taught and let's just say, I am less than impressed with myself. I am pretty sure my photos were just as good on the automatic setting as they are with the manual one I am using now. I have a long way to go. But it was fun, it was different, and it was treasured time with a good friend without any chaos.

Nathan surprised me with some new shoes. He bought two different sizes and two different colors just so that I was sure to have something that fit and that I liked. He even included a tiny pair of new balance shoes for Price, which just made my day. My day was made even more by the fact that they were too small for Price ,and that they will have to work for Street in the near future. (We have been a little concerned (or okay, I have) that Price's legs and feet have not grown much at all in the past year and a half. Turns out that we think it was because of his inability to bear weight. Our PT assures us that the legs/feet grow in direct proportion to the amount of weight they bear. So, now that Price is bearing weight, I have been really hoping that his legs and feet will catch up. Phew...that was a long explanation.)

Tiffany and Jason invited us out to their place for dinner. We picked up Lupe Tortillas and enjoyed a nice, relaxing (after the littlest one went to bed), and fun dinner on their beautiful new patio furniture. The weather was perfect. No humidity and even a tad bit cool. Tiffany and her girls made me a chocolate cake and Nathan brought the TCBY one he had picked out. Every time we go to TCBY I think I make a comment about the yogurt cakes and how much I want one. We rarely go there anymore, but it was sweet of him to think of it after all these years of me drooling over them.

On the way home we saw the biggest shooting star that just topped the day off. It was pretty amazing. Nathan is also taking me out to a nice dinner Monday night to celebrate even more. I feel so loved!

Ellerina

2011-05-13T14:27:00.004-05:00

*somehow this post got deleted last night. I tried my best to duplicate it! Thanks for all your sweet comments.

...is what her daddy calls her. Ellerina Ballerina. She had her first dance recital (last year we were out of town) this past week. She takes dance at the sweetest little studio by our house with a few of her good friends. They did a tap dance to "Dance for You", and it was just darling.

her poppy (who has sat through more dance and cheerleading competitions/recitals with a smile on his face than any other man I know)
her lulu

and her bebe was present too, we just didn't get a picture...shoot

the tiny dancer

I have perfected the bun.

Ellery with two of her cute friends, Ella and Lillian

E loves to perform for us, but I thought she might get shy and clam up on stage...not a chance!

how cute is this?

Street is 7 months!

2011-05-09T20:21:00.007-05:00

Is it 7 months already? At 7 months Street:

- is still bald

- is doing planks and scooting himself backwards

- is in constant motion

- slept the entire night for the first time as my Mother's Day gift but hasn't since

- is still swaddled at night and for naps (in his woombie)

- tries to take his diaper off while I am changing him

- likes to be anywhere the action is

- can walk around the kitchen island in his walker

- can pull the side mirrors off his jeep walker and enjoys banging them together

- has started really interacting with his bro-bro and loves to laugh at Ellery

- has no teeth but likes to chew on everything

- reaches for his mama

Noticing a trend here? Between Rager's constant motion and Price trying to navigate the stairs with his not-so-awesome balance, I am going to be one busy mama.

Pictures didn't go so well, but they capture month 7 pretty right-on.

Love my "little" mover and shaker.

{Oh, and at his 6 month appointment he was 21 pounds (93rd %), 29 inches (100th %), and his head was 95th %}

Made me a mother

2011-05-08T16:53:00.007-05:00

{chubbyfoot.com}

Can't go around it

2011-05-02T20:50:00.002-05:00

...got to go thru it!

My friend, Emily, sent me this picture when she was working in Price's Sunday School room at church on Sunday. He's so proud of his new found ability to move his body in a forward direction!

Everyone is rooting for you, my sweet boy!

{have a lot to write when I get a chance to sit down. felt such a renewal to PRAY BOLDLY for our boy. it's so easy to get weary. don't stop praying. our God can do anything. don't give up.}

Easter

2011-04-25T18:28:00.004-05:00

The kids loved their Easter baskets from Lulu and Poppy. How about this crazy head of hair?

Street just loved the grass.

Street and James had some fun,

while the "big girls" had some fun with Easter eggs.

Ella and Ellery went to our neighborhood Easter egg hunt.

I managed to get a decent picture on Easter morning. Last years didn't go so well.

We played outside on Sunday afternoon.

The boys got a baby pool and E had fun with a sprinkler.

Most importantly, however, we celebrated that "He is RISEN" and that the tomb is empty.

Photos by Ellery

2011-04-18T20:41:00.004-05:00

Ellery got after it with my camera after our little inpromptu dinner picnic.

Back in the ring

2011-04-16T17:03:00.005-05:00

I wrote a blog post late last night, but then deleted it. Have you ever done that? I wasn't sure how much I would like it/be glad I wrote it in the morning. I think I would have been okay with it. It went a little something like this.

All of Price's tests from Duke came back normal. Every single one. Even the one we repeated. The doctors said if we lived there, they would ask us to come back to the clinic, look at Price again, and see if they missed anything. No thanks. We were there for four days, all day long. I think he was evaluated pretty thoroughly.

We had an appointment with a mitochondrial disease expert here in Houston yesterday. We don't think P has mito as he is not the typical case, but our neurologist said we might as well check it out. It took awhile to get in to see her, and yesterday was the day.

Our appointment was at 2:30 and we didn't get to leave the clinic until 5pm. That's a whole lot of waiting in a tiny, white room with no toys. A student came in first to do an intake. She was very friendly and Price took right to her. In fact, Price met a milestone right there in the room during the intake. He got himself up on all fours for the first time ever. This sweet girl is doing her intake and Nathan and I are staring at P with our mouths wide open, cheering him on. We even were taking pictures. She must have thought we were crazy.

The doctor then came in and was very pleasant, but she definitely did not impress P. The first thing she did was wave a stuffed animal in front of his eyes to assess his tracking abilities. Really doc? He could have cared less about that stuffed chicken. She then went on to tell us that whatever they would be testing Price for now would be very, very rare diseases/syndromes. She also said that they would not be treatable and that the prognosis would most likely be poor. She continued on to tell us that she could understand why we wanted to know what he has as it could have reproductive consequences for us or for our other kids. But mainly, she understood our desire to know if we would be caring for P for 10 years or 50 years.

Now, N and I are not in denial. We know there is a great possibility we will be caring for Price his entire life. We have gone there. But, to tell us this after having known P for 2 minutes was just wrong (especially the part where she assumed his shortened life span). I wanted to sweep my baby up in my arms and run right out of that room. Except I couldn't because there were 4 med students hovering around the door like we were some science experiment.

We didn't do any of the testing she recommended yesterday. We were done. Price was done. We just didn't have it in us. We felt like we had gotten back in the ring, ready to fight again and we were just not ready.

We definitely have decisions to make. Price is doing so well. The fact that he met a milestone during this awful appointment was not lost on us. We are enjoying this boy and oh, how we love him. He has taught us more about heaven then we could have ever imagined.

I have been on the verge of tears ever since the appointment, feeling fragile. The Lord allowed me to run into a sweet, wise friend today at Nordstroms while trying on some jeans (this might have contributed to my tears..ha). It was definitely not a coincidence and was yet another reminder of how He is with us through all of this. He is always faithful. We are dissapointed when we say "Amen" and the miraculous healing has not taken place. We are dissapointed that we have never found the answers after countless tearful prayers and begging and pleading. We are dissapointed when a doctor speaks painful words to our already tender ears. But, He remains faithful and good and we will continue to praise the One who loves P much more than we do.

6 month pictures

2011-04-13T22:47:00.003-05:00

We have been busy this week hanging out with Paige and Piper. Piper and Street have had lots of play time and we wished so badly that they lived closer. They even got to take on gymboree for the first time. Piper acted so lady-like and sweet, while Streeter had a difficult time when the teacher took his ball away. He never quite recovered. Ellery showing Street bubbles for the first time. He loves watching his big sister.

He's looking a little "Where's Waldo-ish" in these pics, but I had to get them quick before I blink and he's 7 months old. Times a flying.

Boys!

2011-04-10T19:01:00.003-05:00

We joke that if you could take Price and Street, put them in a shaker, and spit them out...they would be two typically developing kids. Not too slow and not too fast. Not too calm and not too crazy. But, that wouldn't be any fun, would it? Here is Price trying to navigate the stairs. He wants to get up and down them so badly.

And here's Streeter getting after it with the avocado. Don't worry, we don't just sit him all by himself on the table. He can't get enough of this new thing called food.

Street is 6 months

2011-04-08T15:38:00.005-05:00

At 6 months Street...

- is sitting up!

- is blowing raspberries and starting to babble

- is growing tired of his bouncer and exersaucer and prefers to be held or on the floor playing

- likes his walker and can get across the room

- is an official tummy sleeper

- doesn't stop moving

- is ready for some solids and started with avocado yesterday for lunch

- wears a sz 9-12 months

- still is as bald as they come

- waved bye-bye (which is so bizarre but I caught it on video....I was asking Price to do it, and Street did it instead)

- wakes up way too much at night to eat

- only has eyes for his mama (which is probably why I have not started working on the above)

- is a gracious gift from the Lord

{6 month chair picture to come...we have been at the ranch all day}

Did I ever?

2011-03-31T12:14:00.004-05:00

...tell you about Nathan's Burger Bus party? It was so much fun! ... post a picture of my friend Melissa giving Price his first sip of Coca-Cola?

It was right before bed time I might add, but he sure did love it.

...describe to you how weird/gross/kind of cool Nathan's Valentine's gift to E was? World's largest gummy worm.

...tell you how much I love these 3? Check out white boy on the right.

Little things

2011-03-28T19:45:00.003-05:00

Such simple joys - being able to grocery shop with my baby and seeing him enjoying Ellery's old ride on toy. I have really been soaking in all of these sweet moments that most everyone doesn't think twice about. Nothing will ever take the place of our precious Price, but just watching my son develop so typically has been nothing short of miraculous and wonderful. Never take for granted the little things, my friends.

Saying thank you

2011-03-21T12:03:00.006-05:00

Approximately two months ago, we received a call from Price's neurologist here at TCH. I was expecting the call, as he had an MRI a few days prior and we were awaiting the results. The neurologist started using words like atrophy and cerebellum, and problems with myelin, and my heart just sank. We weren't expecting those results. I just remember him ending the conversation with a group of diseases he wanted to test Price for and his last words to me, "I'm so sorry." I hung up the phone and looked at Nathan, who could read my face so clearly. The tears started to flow as I explained what the neurologist had told me over the phone. I knew the group of diseases they wanted to test Price for and they were complex, life-limiting, degenerative diseases. This is the first time I thought to myself that my child could die from whatever is going on inside that precious body of his. I was shocked. Nathan fought back tears as we talked about how we know Price has something and that this doesn't change anything about who he is. I remember Nathan just saying, "I love him so much." I texted my mom to see if Ellery could spend the night at their house and she quickly texted back "Dad is on his way".

As Nathan was putting Price to bed, I went back into my room and started sobbing. I called my mom to explain what was going on and couldn't catch my breath. I remember just saying, "Mom...mom...not Price, no, not our Price." (My poor mom has been on the receiving end of so many of these conversations and bless her heart, she just listens and cries with me.) After I got off the phone, Nathan came and put his hand on my shoulder and just started praying silently for me. I was never scared, or panicked, just so unbelievably sad, shocked, and heartbroken. We had always seen Price getting better, doing more...and so to think that his brain was getting worse...well, that had never crossed our minds. I remember just saying to Nathan, "I need the Lord to be near right now, so near to me."

(As a side note, the Lord definitely was very near. From new flowers in my flower pot that I did not plant nor ask for to a message from a friend who had no idea what was going on inside our home...the Lord let me know he was very present.)

We went to bed and awoke to the Lord's new mercies. We went to TCH and had Price's blood drawn for the hundredth time and waited. And waited. Our neurologist called me on Christmas Eve with the results that the testing was negative for an MPS storage disease.

This is kind of the background as to why we went to Duke. Because if Price DOES have something degenerative, we want to know what it is and seek any form of available treatment. So far, our testing from Duke has all been normal except for a slightly abnormal organic acid urine test. We are repeating that urine test and should have the results soon. He has had this same test before at TCH when he was about a year old, and it was normal. The geneticist said that the results can differ based on so many factors, such as diet, environment, etc. If the repeat test comes back with the same elevations, we are most likely headed down the metabolic/mitochondrial dysfunction road. Diagnosing these diseases is so hard as there are so many and not one child has the same symptoms. It's all so gray. We also still have some pending genetic tests which if positive, would send us in a completely different direction.

Price's MRI, however, from Duke came back with no significant findings. Having had a previous MRI at TCH two months ago, this was shocking news. How in the world could one MRI indicate a possible degenerative disease and the next two months later indicate nothing? Now, we don't know if they compared the two MRI's and don't have the exact radiologist report, but the summary just reads, "No significant findings."

I have a hard time reconciling all of this. Price has not changed, but yet it looks as if his MRI has. Ellery brought home a Bible thought from school (they have these each week and it's just a piece of paper with a verse or thought on it). Some I read and some I don't (good mom, huh?), but last weeks thought spoke volumes to me.

I immediately got down on my knees and thanked the Lord. Thanked the Lord for Price and for what He's doing in his life. Whatever this MRI means or doesn't mean, or whatever these test results indicate....He is at work...and it's very obvious.

Spring breakin

2011-03-15T14:43:00.003-05:00

So much to say. So much to write. But for now, we are trying to fit in all the picnics, park, and fun day trips we can while everyone is at home (and while the weather is perfect).

Cowgirl

2011-03-10T13:10:00.001-06:00

Street is 5 months!

2011-03-08T20:00:00.000-06:00

At 5 months, Street..

-LOVES to jump. This boy loves his jumper and cracks us up with his wild-man jumping.

-likes to put his lips together and make random noises

-is starting to sit up unassisted (this is, by the way, pretty amazing to us)

-has had a taste/lick of green beans, chicken, and avocado. Ellery likes to share her table food and he can't get enough. We did give him a bite of rice cereal (I'm not a big fan) and he doesn't want anything to do with it...skipping straight to the good stuff I guess.

-laughs out loud when we tickle him or sing a funny song

-rolls both directions when he feels like it

-went to the nursery at church for the first time last Sunday and went on a buggy ride (side note: his teacher, whom we adore, told us she had to move him to the back of the buggy because he couldn't keep his hands to himself)

-thinks his big sister and bro-bro hung the moon

-has a new, manly room that fits him just perfectly

Duke

2011-03-06T14:42:00.004-06:00

Thank you everyone for loving our family and for your prayers for our trip to North Carolina. Our time at Duke was productive and very busy! We went non-stop for 3 days and went to appointment after appointment. We added an extra day to our trip so that Price could have an MRI at Duke. He also had an EEG, an x-ray, and a ton of blood work. We were very impressed with the doctors and nurses at both UNC and Duke and we felt like we were in good hands.

So what did we learn? Not much yet. We ruled out a couple of diagnoses such as muscular dystrophy. We learned that Price is not having seizures and that his hips and spine are normal. Most of the blood work will be back in a few weeks and then there are several test results that will take months to get back. We are hoping to hear back from the neurologist tomorrow about Price's MRI.

So...we wait.

Made me smile

2011-02-28T20:52:00.001-06:00

This came in my email tonight. Can't wait to share more. {chubbyfoot.com}

And we're off..

2011-02-26T20:47:00.003-06:00

North Carolina...raise up. I don't know how that song popped into my head but it's there.

We leave tomorrow with the boys. We have appointments on Monday, Tuesday, and Wednesday that will take most of the day.

Nathan and I were talking about our expectations for the trip today. I really don't know what to expect. I am thankful for the opportunity to go, thankful for the doctors that are willing to meet with us, and just plain thankful. I keep praying for an encouraging visit, although I know it could very likely not be an encouraging one.

We have been told so many things by doctors with the most recent one telling us there is a possiblility our precious son's life might not be at all what we expected. That we might not get to see him grow up. Thankfully, all the tests we have done so far have not confirmed a degenerative diagnosis. I think because we have "gone there", we are prepared to hear anything. But then again, how can you really prepare to hear anything when it concerns your child's life?

Can you tell my thoughts are all jumbled? Basically, we know the plans He has for us and for Price are good. We know He loves Price more than we do. And we fully hand over our son to Him.

We are thankful for all the prayers. Truly thankful.

School days

2011-02-22T19:27:00.005-06:00

Thanks for the prayers last night. Boy, did I feel them. The enemy so badly wanted to thwart the prayer plan, but the Lord had the victory and my friends poured their hearts out. I seriously have the best friends. The absolute best.

Price had a GREAT day at school today. In fact, his teacher sent home his report and it says, "It was a perfect day of school for Price. He was a very happy boy. He played a little with some toys, mingled with the boys, laughed a lot, and ate well."

I did not get a great picture because he did cry when I dropped him off. But, I did not get emotional at all. In fact, I felt such peace leaving him with his three teachers. His lead teacher said I could call her during the day to check on him, but I never felt the need to. I guess I have confidence he is in good hands.

Here's to more good school days! What a big boy!

{a phone pic on the way home....tired boy!}

Big Week

2011-02-21T12:03:00.002-06:00

This week is a big one, especially for Pricey. He starts SCHOOL tomorrow! We weren't really looking to put him somewhere until the fall, but a spot opened up and well, we decided to take it. It's not without some hesitation, but we are going to give it a go. He will be in school Monday thruFriday from 9am until 2:30pm. This is longer than Ellery goes to school. It really will break my heart for him to be gone that long at the young age of 2 1/2, but we are trying so hard to do the very best for him. And right now we are thinking this is it. I also think it will make my time at home with him more fun. There will be no in-home therapy and we can just be together as a family. I really just want to be his mom, and I think him going to school will give me this opportunity.

We also have our trip to Duke this upcoming weekend. I am trying to wrap up some last minute things for the trip and organize Price's medical binder this week. Some sweet friends of mine offered to pray for me, Nathan, and Price tonight around 8pm if anyone wants to join us in prayer.

I will be sure to post pictures of Price's 1st day of school tomorrow!

LOVE

2011-02-14T13:17:00.004-06:00

I have a little box at the top of my closet filled with letters from Nathan. They go back to when we first met, through our engagement, and now married life. I read some of them today in honor of Valentine's Day and it has been so fun. I think Nathan's love language is letters. He has a way with words and expresses his feelings much better through the written language than the spoken language. Some of our early letters are so goofy and I laughed a ton. Here's a prime example.

this was at a trip to Sea World when we were dating

When I was turning 24, Nathan filled my room in my apartment with 24 balloons. Each balloon contained a note in it, one of the 24 things he loved about me. I won't share all 24 notes because I might start turning red but a few of my favorite funny ones are:

-It's a miracle - THAT hearts fits inside YOUR body.

- You have just enough fun to be on the edge but not over it. (this one really made me laugh)

- Smiles are a consequence of being around you.

- You provide full-time flutters.

I don't really like declaring my love for someone over the internet but I really do love my Valentine. When I married him 7 years ago, I could have never imagined loving him more, but I do...so much more. We have walked through some difficult and painful times and it has bonded us together in such a powerful way.

Okay, enough mushiness...everyone enjoy YOUR Valentine!

Street is 4 months

2011-02-09T20:09:00.003-06:00

At 4 months, Street...

-sits well in the bumbo

-plays with his feet constantly

-grasps toys and puts them in his mouth

-pretty much puts everything in his mouth

-spits up a ton...averages about 6 outfits a day

-eats whenever he feels like it which is about every 3 hours or so

-doesn't take his eyes off me when we are in a room together

-does less raging and more smiling

-is sleeping better, in fact he has gone from 9-7 the past few nights (but don't let that fool you...it includes waking up and putting his pacifier back in several times throughout the night)

-is wearing an 18 month onesie in this picture

-acts way too big for his age...and seems very eager to grow up too fast

-is bringing JOY to our family and we are so THANKFUL

The day they found their feet

2011-02-07T19:44:00.003-06:00

It happened on Friday. Both boys found their feet. Let me explain. Price knows where his feet are but he has never been able to reach them. Between his hypotonia and low body awareness, he never played with them like a "normal" infant does. Well, Friday while I was changing his diaper, he pulled both feet up to his hands and just grinned real big. That same day I was changing Street's diaper and he did the SAME thing. Street now plays with his feet all the time, and he's almost able to get them in his mouth.

Saturday we went to the mall because we were so desperate to get out of the house after the "no snow day" on Friday. I put Price in his car seat, went to grab my purse inside the house, and came back to the car and noticed Price had taken off not only his shoes but his socks too. He just grinned. I had to put his shoes and socks on three more times that morning. When we were putting him into the car after our mall trip, I noticed he was missing a shoe. One shoe. Most moms would probably be annoyed and frustrated with this but I was just so thrilled that Price had done something so normal.

Today I ran into an old therapy friend at the grocery store. Her son is about a year older than Price and when we first got thrown into the therapy world she was always there to talk, listen, and encourage. We talked for awhile about how her son was doing (he doesn't go to therapy anymore) and she said what they were most likely dealing with was severe ADD. And she said, "And I will take it handed to me on a silver platter." They had been through tons of testing with their son like we have with Price and she was basically saying a diagnosis of ADD would be just lovely. I can relate.

A few years ago I read something that still comes to mind very often. It was listing the secrets to a content life. One was to never compare your lot to another. I struggle with this at times when I am craving "normalcy" but I try not to compare. Sure our life looks different, our perspectives have changed in huge ways, but this is what makes our life so rich. I am thankful for the richness.

{And I am thankful that my boys 26 months apart found their feet on the same day.}

Flashback

2011-02-01T16:08:00.004-06:00

Disneyland 2010

This time last year we were just returning from a trip to Disneyland. Let's see... Price had just learned to drink from a cup, he couldn't yet roll, and had no clue what his legs are for. He still couldn't sit unassisted or if he did it was for a brief second before tumbling over.

Last weekend we went to the zoo. Price rode the carousel. All I did was stand beside him with my hand on his back. He didn't really enjoy the ride (I think he was scared?) but he DID sit all by himself and held on to the pole.

Today, Price had an evaluation at a school we are looking at sending him to at some point in the future. He seriously was showing off...doing every task the teacher asked of him. Did he have trouble getting the peg in the puzzle? Sure, he did. Are his movements the most fluid? Nope. Does he still have a really long way to go? You betcha. But, he completed every task and did it with a smile. Nathan and I were so proud.

E is for entertainment

2011-01-30T19:30:00.000-06:00

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

Clay

2011-01-25T15:26:00.005-06:00

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!

Conversation

2011-01-23T21:37:00.004-06:00

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."