Pix and Fundraising Update

Jonathan standing outside in our backyard. He took a step on his own on Sunday during the Superbowl!
Jackson with his trains.
Boys in Jonathan's crib. Jackson enjoys waking up his little brother every morning.
Jonathan asleep.
Jackson giving Jonathan a pat and a kiss.
Jackson got to bring home Ellie, the Elephant, from Noah's Nook for his good
behavior.
Ellie hanging out with Jonathan.
Ellie sleeping with Jackson and Buzz Lightyear.

We came in second place on 25 January 2007. There was a parent who fundraised offline and beat us by $700! Many thanks to all of you who contributed. If you have not donated yet and would like to, you can give online: www.firstgiving.com/jonathanwarren. If you are uncomfortable with online giving, you can mail checks to
The Bell Center
1700 29th Court South
Homewood, AL 35209

As of today, our total online is $13,023.60. We think we have at least $3,000 or $4,000 in checks that have not been factored into our total. Thank you so much!

We are gearing up for Saturday. Jamie and I both feel ready. Betsy and Jim have also been training. Keep us in your thoughts and prayers for good weather and our health!

Tomorrow is the anniversary of Jonathan's heart surgery - we cannot believe it!

Have a great day and thanks for keeping up with our story!

Julie
www.firstgiving.com/jonathanwarren
juliewarren@mindspring.com

Noon Today

(Thanks to Target for letting me use this photograph.)

I sent this out last night as an email. In the event you did not get it, I thought I would "double dip" by putting it on the blog...
Julie:)


Dear Family and Friends,

We went to Moe's Saturday night. As we were packing up to leave, a couple arrived. Their little boy had glasses and his hair was a little wild, probably from sitting in his car seat. They toted a chair similar to one we have on loan from the Bell Center. That was our first clue. Jamie and I refer to it as the “medieval throne” because it is quite ancient in appearance. Jamie and I had not spoken to each other but both of us noticed the chair. We were not going to give this family undue attention. As Jamie was finishing with Jackson, Jackson screamed out, “HEY, DADDY! THAT BOY HAS SILLY HAIR!” I almost lost it because it was so funny and not funny at the same time. I kept my head down, trying to clean the table and contain my laughter. Jamie told the couple he was sorry and whispered to Jackson, “That is not nice to say and your hair sometimes looks like that after a nap” to which Jackson responded, “I KNOW, DADDY, BUT HE STILL HAS SILLY HAIR!” His parents laughed it off and then noticed Jonathan’s leg braces. The mother said, “Are those AFO’s?” at which point, we gladly chimed in that they were and that Jonathan needed them to force him to bend his knees. We mentioned that he had Down syndrome. After chatting a few minutes, we dragged Jackson out before he could make another loud observation. When we got out to the car I could barely talk because I was laughing so hard.:)

We have had ample opportunities to make connections with families with children with special needs. Over the last year, the Lord has changed our despair and turmoil to peace and determination to "pay it forward." When Jackson was born, we saw him as a tremendous blessing and just what we "ordered." We see Jonathan as an additional blessing that has also changed our lives. Jonathan's entrance into our household has turned it upside down and defined us in ways we never knew possible. Thank goodness God does not always give us what we think we need or "ordered." I cannot tell you how thankful we are God has blessed us with him because He has changed our hearts in a way we might not have experienced without him. If ever I begin to compare our family to another's, I stop when I see those precious faces looking back at me. I wouldn't have them any other way.

As we were leaving Mothers’ Morning Out on Monday afternoon Jackson said, “Mommy, I am going to be in a new class tomorrow.” I asked him why and he said, “Mrs. Sherri isn’t going to be there. She’s got Down syndrome.” Not realizing Down syndrome was contagious and hiding my smile, I said, “Okay." I moved on to the next topic.

Jamie and I often have wondered, "How do we tell Jackson that Jonathan has Down syndrome without making it sound negative?" We have been biding our time, thinking about casually throwing it out there or reading a book about siblings with Down syndrome. An opportunity presented itself yesterday morning. We were watching Sesame Street and it began with a testimonial of a man with Down syndrome telling about his favorite Sesame Street memory. After he was finished, I turned to Jackson and said, "That man has Down syndrome." Jamie said, "Do you know anyone with Down syndrome?" Jackson said, "Uh, let me fink... I fink I know a wittle boy who has it... Jonafan!" Jamie turned to me and asked, "Who told him??!!" I started laughing and said, "Honey! He hears us talk about it all the time!" I figured Jackson knew and might put it together sometime. Again, God's perfect timing.

For those of you who do not know, we (Jamie, Jamie's dad, my sister, and me) are running in a relay for the Mercedes Marathon on Sunday, 11 February 2007, to help raise money for the Bell Center. Jonathan attends the Bell Center twice a week for therapy. I have said it so many times, but I can never say it enough: this place has been our saving grace. They have been such a source of encouragement and a refuge for us.

As I write this, we are in second place in the fundraising contest for the Bell Center. I wanted to thank each one of you for showing your support on such short notice. We set our goal at raising $20,000 by tomorrow, Thursday, 25 January 2007, at noon, because word on the street was that there was another family who was closing in on $15,000 last week. I thought we were ahead of the game to get our fundraising page up and running mid-January. Little did I know that there was a contest to see which family could raise the most money and that there was a deadline before the actual race! Once we found out about the contest and the deadline, we wanted to win so we set the stakes high from the get-go.

Some of you have shown your support by praying for us. Some of you have contributed financially. We can never repay you or thank you enough. We can only pledge to minister to the other families who will walk in our shoes in the years to come. You have our word that we will "pay it forward." We feel so fortunate to have friends and family like you who have supported us in the last year.

Please forward this email on to anyone you think might be interested in our story, in praying for us, and/or in contributing financially. You can visit our fundraising webpage to check up on our progress: www.firstgiving.com/jonathanwarren.

If you cannot give now but would like to at a later date, you can send checks payable to the Bell Center for Jonathan Warren to:
The Bell Center
1700 29th Court South
Homewood, AL 35209

Thank you,
Jamie, Julie, Jackson, and Jonathan
www.thefourjs.blogspot.com
juliewarren@mindspring.com

Mercedes Marathon and Pix

Sunday, 11 February 2007, will be my second time to participate in the Mercedes race on behalf of the Bell Center in Jonathan's honor. Last year I ran with four other people from Jim's firm (Jamie's father). This year I will run with Jim, Jamie, and my sister, Betsy. It will be so meaningful to have a family team.

Last year I remember Jamie stayed up most of the night listening to Jonathan breathe, counting his breaths. Jonathan had just had open heart surgery the previous week and was recovering. We were still freaked out, afraid he might pass on our watch. Sunday morning, as I headed out to the race, Jamie left with Jonathan to see the cardiologist. We were both scared his heart was failing. He already had fluid behind his heart - a result of his lungs adjusting to the new influx of oxygen. The ultrasound revealed no more fluid so that put us at ease and I was able to run with more confidence.

This year is completely different. Jonathan is healthy and a joy. He is progressing so much more than we ever imagined. He is wearing braces on his legs to force him to bend his knees. On his own, he likes to "straight-leg" it on hands and feet. The braces force him to crawl. He no longer cries when I put them on - a few weeks ago he would cry, insert thumb, and lay on the floor. It was slightly heart-wrenching. He is putting on the pounds - about 19 pounds or so now! He eats like a champ and can feed himself. He LOVES his big brother, Jackson, and wants to be in anything Jackson is playing. He "talks" constantly, loves to interact by grabbing our faces and smiling into our eyes. Jackson often wrestles with him and instead of crying, he endures it with a grin.

In the last year I have found peace like no other I have ever experienced. We were so devastated upon learning his diagnosis after he was born and now cannot imagine him without it. In actuality, I have come to appreciate the Down syndrome. Selfishly, it has changed my life and the way I experience my relationship with God. Real difficulty, agony, and hardship are no longer strangers. Because of that, I have real peace like nothing I have ever experienced. I highly recommend it.:)

The Bell Center has been such a breath of fresh air in a difficult year. I benefited as much as Jonathan. Betty Bell and her staff were instruments in our education and healing this year. Without the Bell Center, we would have experienced all this much differently.

Please help Jonathan by giving financially to the Bell Center. You can go to this website: www.firstgiving.com/jonathanwarren and give safely and electronically. Our goal is to raise over $20,000 - the highest amount ever donated through this race. The deadline is 25 January 2007.

Please send this to anyone you think would be interested in helping us. Thank you for your donation!

See the recent pictures below!

Love,
Julie:)
juliewarren@mindspring.com


This is Jackson at his school's Christmas program. I dropped him off earlier that day wearing a Christmas outfit his Nana made and later returned to watch his show only to find him wearing this t-shirt and pants... bad sign - his replacement outfit I sent to school months earlier. It could only mean one thing... His teacher explained that she smelled something, unable to discern who it was. She never suspected Jackson so
she was surprised when he admitted to "soiling his suit." She figured he must not have been able to unbutton his outfit on his own. Ugh.


Jonathan crawling after a ball under the kitchen desk.


Jackson, Jonathan, and Daddy decorating for Christmas.


Jackson posing as an angel at Zoolight Safari.

Jonathan "chilling" at the Zoo.


Boys looking at Christmas lights at the zoo with friends.

Celebrating Mommy's birthday.

Boys opening gifts at Nana and Pops' house.

Jackson and Aunt Betsy decorating cookies for Santa.

Jonathan sampling Santa's cookies.

Jackson and Aunt Betsy watching a movie.


Mommy and Jonathan on Christmas Day.

Boys with Daddy on his birthday.

Daddy celebrating New Years' Eve with sparklers.


One morning while getting ready for the day, I heard on the baby monitor, "Mommy! Daddy!" I ran upstairs to find both boys in Jonathan's crib.

Jonathan giving himself a kiss. See, he's just as self-involved as the rest of us!

Jonathan's First Birthday

Someone wishes it was his birthday.
Jonathan crawling.
Jonathan standing.
Jackson showing Jonathan how to ride his airplane.
Nana, Pops, and Jonathan.
Jackson decorated a cake for Jonathan.
This cake had lower case "j's" on the side for our "Little J."
Brothers.
Jackson led us in singing "Happy Birthday" to Jonathan.
Jack "helped" Jonathan blow out his candle.
Jonathan's first handful.
Jonathan's first bite.
Good.
Excellent.
Need a thumb break.
All over the face.
Family photo opp with the birthday boy.
Not so sure.
So good.
Jonathan sits with Granny as Jackson opens his gifts for him.
Jonathan is allowed to play with the giraffe.
Jackson pictured here taking command of the gift situation.
Yeah, Jonathan gets to play with a present!

Daddy and Jonathan

Jonathan driving his totwheels with Jackson trying to hitch a ride.
Jonathan and Jackson sitting on the loveseat on Jackson's third day of school and Jonathan's first day.
This is Jackson's signature entertainment face.
Jackson enjoying his cheetos.
Jonathan trying out cheetos for the first time and loving them!

It has been three weeks since my last update! Here we go...

Jackson started Mothers' Morning Out for the third year at Noah's Nook the Tuesday after Labor Day. Jonathan was supposed to go that day as well. I signed them up last year thinking I signed Jack up for Monday, Tuesday, and Thursday and Jonathan on Monday so he could do therapy on Tuesday and Thursday. Alas, I was confused. Needless to say, I showed up with Jonathan the wrong day last Monday and was so embarrassed!

Jonathan is up to between 16.5 and 17 pounds. He is eating baby food along with yogurt, banana, grapes, peaches, hamburger meat, spaghetti, muffins, rolls, eggs, etc. He is doing a great job of feeding himself. He is drinking out of a cup with a straw very well and is still nursing some.

Jonathan has three teeth and is working on a fourth one. We had heard that he would get teeth late, out of order, and they might be turned in crazy ways. He got his bottom two, a front tooth, and is working on his other front tooth. He turned ten months old last Thursday so we are thrilled with three teeth coming in, with a fourth on the way!

Jonathan is crawling, in a sense. He gets up on all fours and then lunges. He pulls himself around with his arms so we are having to tuck his legs under him and show him how to move one knee forward and the alternate hand and then switch. He is going from his tummy to a sitting position on his own. He is sitting nicely and handling rough-housing with his brother well. He loves it, in fact. When Jackson puts his little brother in a headlock, Jonathan just grins.

Standing is something Jonathan loves as well. He is so thrilled when he can stand on his own. He leans up against the couch or holds our hands and grins from ear to ear.

Jackson is quoting story lines from books and incorporating them into everyday conversation. One day last week he said, "Mommy, I woke up in a cold sweat last night and ran downstairs." I started laughing and asked him where he got that. He grinned and said, "Papa Bear, when he had a bad dream." He loves to help me cook - he cracks eggs, stirs, and pours in ingredients I have measured. He tries to help feed Jonathan, wants to hold his baby brother, and gives Jonathan toys to play with when he is in a sharing mood.

Kids are like sponges where their memory is concerned - whether they quote you (not always good:)), a story, a movie, or scripture. Jamie and Jackson are watching Star Wars a lot these days (the non-violent parts) and Jackson tells me about R2D2, adats, "Darf" Vader, "Wuke" Skywalker, Han Solo, Chewbacca, Princess "Wea," etc. We have a Star Wars Trivial Pursuit game and Jackson loves the pieces in it - four pewter game pieces in the images of Luke, Lea, Han, and Darth Vader. There is another counting device in the form of R2D2. He sleeps with this. He quotes Star Wars lines to me and then wants to talk about different things - like the planet he calls "Hoff" (Hoth). He tells me that it is made of snow and ice and that "Earf" is not like that. When he is not quoting stories or movie lines, he is learning scripture at church. It has been very convicting watching a three year old turn out scripture like a champ when I don't make it a priority in my life. I have begun to do it myself. Our church has a website with a section called "Know the Word" where you can sign up to receive a weekly passage to memorize. I am trying to keep up!

That is all for now.

Have a great day,

Julie:)

juliewarren@mindspring.com

Tubes, Growling, No more bed rails

Jackson and I took Jonathan to see his ENT today. We went six weeks ago. At that time, Jonathan had a tympanogram done that showed a graph of ear activity. His right ear revealed negative pressure. That means it could act as a vacuum and suck in fluid. There was no fluid at the time but we were supposed to come back for a check up. We came back today.

I got there at 8am. The receptionist looks at me questioningly and says, "What do you need?" I am thinking, "What the heck does she mean by that?" I say, "We are here for an appointment." Duh. Then she says, "Oh, we deleted today's schedule and were not sure who was coming in. The doctor had surgery this morning and won't be in for an hour. You can wait." Yeah, sure. I will wait in the waiting room all morning because I have nothing to do. I stay at home so time is not precious. We just watch TV and eat a lot of cheetos so hanging out here will be a change. Yeah, thanks. I do say, "No, we won't wait. This is inconvenient for me and I won't come another day. We have plans this morning. I will come back." So, I came home and stubbornly found things to do for 20 minutes before going back.

We went back at 9am, waited for a while, and then got called back. The nurse did a tympanogram on each of Jonathan's ears. The doctor explained that now there is fluid in the right ear, something he was hoping would not be there. He explained that in kids with DS, he would rather be aggressive than wait. He wants to do tubes. He talked about how kids with DS are going to have speech issues and how they need their ears to be working - I can agree with that. Jonathan's speech and language will suffer if he cannot hear properly. He cannot afford that.

So, I left the office with plans for Jonathan to have tubes put in his ears next Wednesday. Jackson had his adenoids removed and tubes put in over a year ago so Jonathan's news does not really scare me like it did when it was time for Jackson to "go under the knife." Now I am thankful it happened to prepare me for today. However, now that I think about it, even this would pale in comparison to the heart surgery. Everything does. No sweat.

The surgery will be performed at Children's hospital. The doctor says that kids with DS don't always react to the anesthesia in a positive way. He just likes to be extra careful.

On a different note, Jonathan is attempting to communicate quite a bit with growling. If he is working hard, he growls. If something happens he does not care for, he growls differently. He used to cough at me, I would imitate it, and he would do it back to me. It seemed to be our little joke. He is our little bear.

Jackson slept in his big boy bed last night without the assistance of the bed rail. Jamie coated the floor with pillows in the event of a fall. However, Jackson was fine and has reached another milestone!

Thank you for keeping up with us!

Love,
Julie

juliewarren@mindspring.com

Betsy, Check Up, Evaluation

Aunt Betsy came this weekend with her friend, Claire. Their mission in coming was to try out for American Idol. Betsy thought that she would make a spectacle of herself so she could be on TV. Alas, the cameras weren't here. She tried out anyway, singing a Christina Aguilera (sp?) song. She purposely sung off-key and acted as if she was really good. Then she sang "I Saw the Sign" and did hand motions. I wish cameras had been running!

Today I took Jonathan for his nine-month check up. He got his thyroid checked because his head circumference and length had not increased significantly since last we were there. He has very little veins so he howled while they took blood from his arm. I must confess I shed a few tears as well. There is something mean about holding your child down and whispering, "It's going to be okay" while a needle is inserted in their arm, and they cry out in pain. Jonathan weighed 16 pounds at the doctor's office.

After that, we went to the Bell Center for Jonathan's fall evaluation. Jamie was there already and watched Jackson while I answered questions by Jonathan's team of therapists. They were impressed with him and kept saying how fabulous he looked. Jamie and I swapped about halfway through and he continued answering the questions while I entertained Jackson.

Towards the end of the evaluation, the nutritionist talked to me. I am usually a little unnerved by her because her advice is often not the same as Jonathan's pediatrician. She wants Jonathan taking vitamins, me taking vitamins, and us giving him 24 ounces of breastmilk or formula a day. Well, Jonathan's pediatrician says he is getting all the vitamins he needs through his food and me. I should be taking a vitamin and I do (not every day because I am lazy). I am no longer putting out that much milk so we will have to supplement with formula if we feel it is necessary to do what she says. Ugh! However, we want to do what is best for him and what can it hurt? Nothing. She also weighed and measured him. She got slightly different numbers than the pediatrician's office (weighs 15 pounds, 13.25 ounces). But, she said she thought that he looked good in terms of his measurements.

With all that behind us, we are ready to get into the groove of a schedule. We are ready for Mothers' Morning Out to kick in soon. It starts after Labor Day. Jack will go three days and Jonathan will go on one day.

We head to the beach this weekend with the Bishops - one last trip in the sun!

Take care,
Julie

juliewarren@mindspring.com

Crawling and more highlights...

We went to the Jacks' lake house for our annual Sunday School party - Jonathan's first time. Jackson and Jamie rode the sea doo and mambo.

Jonathan was dedicated to the Lord July 23rd. My parents, Jamie's parents, Jamie's godparents, Emily, Ryan, Eric, Emma, and Granny all came. It was a neat celebration.

Last weekend we went to Greenville to hang out with the Voelkerts - Ryan, Em, Eric, and Emma. We went to the pool on Saturday and it was drizzling so no one was really there. Jackson loves Bible stories right now. He and Jamie will re-enact some of them - his favorite is David and Goliath. Jackson will be David, select his stones, hurl them at Jamie (Goliath) with his imaginary slingshot, etc. Jackson began using his action figures to play out Jesus being nailed to the cross and we had to explain that we don't do that... kind of hard to explain you can act out David and Goliath but Jesus dying on the cross for our sin is serious... I say all that to tell you about the pool. We were in the pool and I hear Jackson say, "Daddy, I want to walk on the water like Jesus." Jamie lifts Jack up, pool vest and all, and carries Jackson mid-air, making it look like Jackson is gliding across the water as Jackson yells, "Hey, everyone! I'm Jesus walking on the water!" He gets out, runs up to his aunt and uncle and says, "Aunt Emmy, Uncle Ryan! Did you see me? I walked on the water like Jesus!" Then to Jamie, "Daddy, I want to do it again!" Let's just say that is probably Jack's one and only time to do Jesus walking on the water.

Jim came and picked Jamie up to go back to Birmingham on Sunday. I went to see my friend, Bronwen, from college. Her girls, Rachel and Elizabeth, played with Jackson while Bronwen and I visited. After that, I headed to Columbia and spent a week with my family.

My mom and sister gave me a break by helping me tremendously with the boys. Jack and I went to a nearby park with my friend, Lori, and her son, Noah. Betsy, Jack, and I went to Fayetteville, NC, to see my brother before he went to Iraq on his second tour. We swam in the neighbor's pool. We jumped on my parents' trampoline. I watched some movies and had a few naps. One or both of the boys got up each night so I had a few naps while I was there. My dad was gone during the week and came back so we got to see him, too. It was a great visit for all of us.

Jonathan has been congested since May. His doctor says that is common and he is too little to be able to cough up what is in his chest and it will go away. This last week at Mom and Dad's at night, his breathing got barky, like a seal. I would listen to the monitor and pace over his crib, making sure each breath wasn't his last. After what we have been through with him, I am probably more nervous than I should be. He seemed to get better as the week progressed.

Jim and Betty babysat for us on the evening of our anniversary a few weeks ago and noticed his congestion and how it became more croupy. I had heard it before. I thought he was looking at me and coughing on purpose to get my attention. As it turns out, he was. He now looks at me, does this repeated croupy cough as he bobs his head up and down with a smile on his face. I respond in kind and he does it back. It is our little joke.

On Wednesday of last week, my mom watched Jonathan while I was out. She thought Jonathan crawled. I thought he had been doing it but thought perhaps I was being overly positive. He was! He is doing it himself! We are so excited! He is eating three meals a day, napping regularly twice a day, rolling all over the place, crawling, sitting up, sleeping through the night, and continues to wow us!

We got home last night after a smooth trip and a stop to see my college roommate, Rozalinde and her husband, Chris. Chris watched Jack so Roz and I could catch up. It was good to see them.

Thanks for keeping up with our story - I will post pictures later!

Julie:)
juliewarren@mindspring.com