Monday, August 29, 2011

Happy 3rd Birthday, Price!

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


Tuesday, August 23, 2011

Price in action

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

Saturday, August 20, 2011

Today

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

Wednesday, August 17, 2011

1st Day

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.

Saturday, August 13, 2011

Sun Valley Part 2



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

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...

Wednesday, August 10, 2011

10 months


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.

Tuesday, August 2, 2011

P.S.

{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.

Monday, August 1, 2011

My Price

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.
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