Easter 2010

Many are asking....and no, we haven't been given the word yet from the doctor about the oxygen, but we did take it off for the pictures. We figured that if it comes off all the time at night and the sat monitor never goes off...then he's probably okay for a photoshoot! :) He looks like a different kid though, doesn't he?

CDH Awareness Day

March 31st is Congenital Diaphragmatic Hernia (CDH) Awareness Day. In honor of Jacob's story, and all the families affected by CDH every day, we hosted a Bar-B-Que at our house. We asked our guests to bring blankets or preemie/newborn outfits for the NICU at Vanderbilt. It was a great success, and we had a wonderful time showing off our little miracle! :)

Thank you to all the people that came and donated. It was a special night for us!

Here's some pictures from the day. I don't have ANY during the party because I was too busy talking to people and getting food ready. Sorry! :)

The front yard...all set up!

The Centerpieces and just underneath you can see the labels I made with facts about CDH. I had them stuck to the tables around the centerpieces. Hope they read them! :)

The Boston Butt pork getting ready for the oven...

The cupcakes made by my friend Brooke/IceThis cakes.

And last, but not least, here's Jacob enjoying laughing at something that Jackson was doing. :) What a silly boy!

P.S. Our sleep study was moved to THIS FRIDAY night. So, pray it goes well!

14 Months!

Wow...another month gone...where did it go?



Our Big Guy is growing so much lately. We haven't had any recent measurements, so we don't know how much he weighs or how long he is...but I'm sure he's getting bigger, because he's HEAVY!!!! He "understands" more and more each day and we're having so much fun with him. We can tell him to push his arm through his sleeve, and he does it. We tell him to cough, and he does it. We ask him to give something to us, and he does. :) It's amazing how quickly they learn!



He LOVES books (especially getting them off the shelf above his changing table). He likes grabbing and playing with cords of all kinds (especially his oxygen tube). He also enjoys opening cabinets, throwing, and chewing on anything.



Lately, he has started "hugging" us. He will be playing, and then turn to us and wrap his arms around us. It's precious! :) MELT.MY.HEART! I hope that skill doesn't go away anytime soon. :)



He is down to one nap a day, about 2 hours. But the magical part is that he sleeps through the night, from 8PM to about 8AM. We have no advice to hand out on that part, other than the night nurses in the NICU getting him on that schedule....one of the PERKS we got from staying in the hospital. I guess it had many benefits for us! :)



We can't believe how much he's changing and how much we smile when we're around him. He's an amazing kid and we're thankful to God for every day that we have with him.



Here's some pictures from the week. We went on a walk this week and enjoyed the warmer weather. Also, since Baseball season (Spring Training) has begun, we thought we'd sport a Cardinals hat. He kept it on the entire walk until we got home in the garage...then he began to take it off. Funny!



Jacob also loves to get into things right when you turn your back for a second. Anyone else have this problem???? :) I had left him for literally 30 seconds and forgot to move things out of his reach. SO...he got the yogurt container and WENT TO TOWN on the yogurt. We had yogurt everywhere! And he was pretty happy about it! :)


Thanks for checking in with us today. Remember: While we are celebrating Jacob's amazing story and enjoying him now, there are many children currently fighting for their lives in NICUs all around the country and many that are preparing for a long stay in the NICU because of similar congenital problems. Stop for a second and say a prayer for the many families whose lives are affected this way. Count your blessings daily!

Cabinets! Who knew?

Who knew that cabinets could be so much fun! Jacob discovered how to open and close the cabinets the other day while in the kitchen. His little tongue was out and his fingers were working hard at his new skill. :)

Check out the smile on his face and the crossed ankles. He's so CUTE!

Just a quick update on Jacob: He's doing well. He's able to get from the sitting position to the crawling position, and can rock back and forth on his hands and knees. He's pretty close to crawling...by pretty close, I mean that I think it will be a month, but that's closer than he has ever been. :) He's been pulling his oxygen off his face more and more lately. I think he's telling us that he doesn't need it. Yay! We go in for our sleep study on April 9th, and we'll find out shortly after that about what we can do with the oxygen.

Jacob has a few cute things he's doing lately. When he gets really excited about something, he will squeeze his hands into really tight fists and tighten every muscle in his body with a smile on his face. It's pretty funny. Also, he has begun to put his bottom lip up over his top lip and shake his head. Then there's also the crossing of the ankles. He does this all the time.

On another note, Jacob has been having really bad separation anxiety lately. Sometimes I can't even leave the room to put laundry away or else he begins screaming. We're in trouble!!!

Thanks for checking in with us. Have a great day!

Date Nights...

That's right. It's official. We have turned a new leaf, and left Jacob for not ONE, but TWO date nights. Our first date since bringing Jacob home from the hospital was spent getting dinner at Longhorn Steakhouse and seeing the movie Avatar in 3D. We were lucky enough to have one of Jacob's primary nurses offer to play with Jacob while we went "out on the town!" Thank you so much Yvonne! We love you!



Here's our attempt at being silly...

Our second date was spent in Atlanta, GA attending a Michael Buble concert. Oh....what a night! Our seats were on the floor in the back, and we loved every minute of the entertainment. We left Jacob with Uncle Biggie and Aunt Jenny (Jon had to go out of town). Thanks so much for watching your nephew! He had a blast! (more on that later)

Here's a picture of the stage as we wait for his entrance.

This is a picture of Michael Buble entertaining the masses with his amazing voice and good sense of humor.

AND.....since we had seats on the floor....we were able to get this picture when he came out into the crowd and stood on another stage in the middle of the floor. We left our seats to get these close up images. He was literally 20 feet away. :) Yay!

But....one question you might have in regards to this post is...."How did Jacob do while you were gone?"

Well...apparently, Jacob knows the difference between "Dad and Mom," and "babysitters" and is not afraid to push the limits. As I type this post, Jacob is sleeping peacefully, as he always does every night starting at 8:00PM. However, for his babysitters, Jacob does not think that sleep is such a good idea! :) Rather than sleep, he wants to kick his feet all around to make the SAT monitor alarm non-stop, and while he's at it, he tries to pull on the cord so that it comes completely loose. Also, instead of staying on his back and falling right to sleep, he decides to do some pelvic thrusting (sorry no video of that one) and rolling around in his crib while singing and talking to himself. Of course, when the babysitters go into the bedroom to silence the alarm, they look at Jacob, and what does he do....place a HUGE grin on his face and laugh. It's almost as though he was saying....I know I am winning!!!!!! :) What a goof!

Thanks for checking in with us. Have a great day!

Look at that tongue!

I think he's gonna be a great reader!

Jacob is really making some progress in his strength building and mobility. He's not quite strong enough to move while in the crawling position, but if we hold up his chest or rear end, he sees the potential and will turn toward whatever it is that he wants. Our PT says that by holding him up, it's allowing him to be mobile and helping him with the skills he needs while he's still building his strength. He's also begun to try to pull himself up in his crib, on furniture, etc. He can't get all the way up on his own, but he gets to his knee, and then straightens out his other leg. This is what it looks like...

We're so proud of our little miracle! :) Every milestone reached makes us more and more sure that God is keeping Jacob in the palm of His hand and he WILL catch up completely. Jacob has always done things his way, so why would he stop now...

This is a really short video of Jacob getting out of the sitting position to his belly. He's doing this more and more lately, and sometimes he will land on his knees in the crawling position and then go down to his belly. It's all GREAT progress! He can also go from laying on his side, to sitting up unassisted, but no video of that just yet.

Have a wonderful day! Thanks for checking in with us and for your continued prayers.

For Thomas and Marcus

Thanks for the great Superman onesie. Although, not sure if it means the Amazing Jacob is being trained by Superman, or Superman is being trained by The Amazing Jacob! :)

Good Dogs!?!

No, we didn't get another dog... We've been dog sitting "Bella" for a few days and it's been really fun for Jacob, Jackson, and I think it's been fun for Bella. For the most part, Jacob just watches them walk/run around the house following each other. As I type this, believe it or not, they're all asleep. Jackson and Bella are laying beside me, and Jacob is asleep in his crib. Wow, this is peaceful! Here's a few pictures with my captions for added effect!

Jacob says, "Wait a minute, there's two?"

"Good Dog, Jackson!"

"Good Dog, Bella!"

"Now what are we going to do?"

As far as an update...Jacob had a doctors appointment yesterday that went fairly well. He got his 1 year shots (BOO) and an RSV shot (another BOO)! He didn't do to well with them this time...he was inconsolable for about 5-10 minutes and did not want to be put down. I've never seen his face get that RED!!! He is recovering, but has a fever and seems fussy, just normal stuff after shots. But, good news is that Jacob's lungs sound clear and he's growing really well. His height was a staggering 33 1/4 inches (99th percentile) and weight was 25 lbs even (72nd percentile). He continues to be long and lean, like his daddy! Good thing! :)

His development continues to make progress. He is getting stronger, it just seems slow to me because I work with him everyday. But, for people that only see him every so often, he seems to be doing something new all the time. He's standing well and finding his balance. He can pull himself up by holding onto our hands, but no pulling up on furniture yet (whew, thank you!). He rolls back and forth more and more, making sure to get whatever toy he desires. He continues to rotate around on his belly, and earlier this week he turned himself around, to see the television, while sitting on his bottom. Quite funny to watch actually. :) He can "take steps" while we hold him up, but sometimes he just picks both feet up and laughs. We "walk" up and down the hallway, stopping every 14 feet so we can bring the oxygen concentrator closer, then do it again. He laughs as Jackson tries to follow us. He bangs things together, moves constantly, uses fingers to poke things, and bounces his ball to Jackson and me. He plays "BONK" (we bonk heads together and laugh) and can give a high five. His "words" are still in the developing mode, but he jabbers alot, especially when a book is in his hands. He has gotten 3 of his 4 molars in the last week, and continues to put everything in his mouth.

Many people ask what the prognosis is for Jacob in the future... Once we catch up developmentally (by 2 or 3 yrs), the doctors say that Jacob will look like any other kid. The only things we have to worry about are re-herniating, respiratory illnesses, and possible bowel problems. Because Jacob's diaphragm was patched with gortex, the doctors will monitor when/if that patch comes loose. Many CDH kids have had as many as 4 or 5 re-herniations. So, we're on the look out for issues related to that. Also, because CDH kids have had their intestines in their chest, many times there are related issues with digestion, bowel problems, etc. So, we're not totally "free," but we're blessed so far by all the progress Jacob has made and continues to make.

Thanks for checking in with us. Have a blessed day! Ephesians 3:20-21.

reach...reach...YES!

I'M

GONNA
GET
MOMMA'S

PHONE...

YAY!!! I did it! :)

We've had a good week at the Tuley household. Jacob is trying to gain more and more independence each day. We can tell that he wants to be mobile, but he's still in the strength gaining mode. But, we know mobility will be coming soon. As shown in the pictures, he can lean all the way over to the floor and bring himself back up again. Coming to a sit all by himself is just around the corner. He rolls back and forth on the floor, and still loves to rotate himself. He can get one knee up and almost underneath him. This is great progress for him! We're happy!

Lately, he's been working on CHEERING the USA in multiple Olympic events on TV and seems to like Snowboarding the best. He grunts very excitedly while the athletes snowboard the half pipe and race each other during snowboard cross. Considering Jacob's extreme start to life, maybe he will always enjoy the thrill seeking sports...For my sake, I hope not! :)

There is not a day that goes by that we don't thank God for Jacob. Yesterday, I was reminded about the day of Jacob's first surgery and the scripture that God led Jeff and I to read to Jacob that day. Matthew 7:7-8. Ask and you will recieve, Seek and you will find, Knock and the door will be opened to you. I am going to continue to ask God for BIG things for Jacob, because that is what God wants us to do...to pray big prayers, and seek and find Him, and to follow when the opportunity comes.

We hope this blog has been helpful to other people that are struggling to find hope amidst the "tough stuff." Hang in there! God will never leave you or forsake you.

Have a great day!

Justin Bieber Hair

Here he is...Teen sensation Justin Bieber
and his look alike Jacob Tuley!!!!!!

Jacob's hair is beginning to get out of control on the sides...so we styled it like JB. Jacob loves to listen to the song "One Time" by Justin Bieber. So here's our tribute to all his fans out there! :)

As for a quick update, Jacob is doing pretty good. You can see from the pictures above that he doesn't really need his oxygen and he is finding ways to be rid of it...with a snotty nose and all. For some reason we just can't get rid of this lingering "cold" so we're disinfecting everything and hoping to get rid of those germs. Spring can't come soon enough.

He's begun to go from a sitting position to his belly, all by himself. He wants to be mobile, but doesn't have the coordination yet. This is the first step and it's pretty funny to watch. Our son, WHO IS NOT THE RISKTAKER, is beginning to take some risks to get things out of reach. Yay!Also, it sounds like he is starting to "copy" words that we say, although they don't sound anything like words, and we can't tell what he is saying at all, but nevertheless we feel like real words are just around the corner.

Thanks for checking in with us. Have a wonderful day. And Jamie...if you're reading this...UPDATE YOUR BLOG ALREADY... you've "had a blog" for a while now!!!! I love you sister! Hee Hee.

Board Meeting

What might they be discussing???

Winter Bugs....Bah!

Well...Jacob's cold has not gone away, and since I last posted Jacob developed a cough that got really bad throughout the weekend. We've been housebound for a while now, except for Superbowl Sunday (we'll get to that later), and the trip to the pediatrician on Monday. So, we are ready for Winter to end so we can get outside and get rid of these nasty winter bugs!



New things he's doing:



Jacob has gotten really good at rotating in his crib...it takes him no time at all now. He has figured out how to bounce while standing and holding onto things. He likes to "grunt" for attention and when answering a question. He is throwing EVERYTHING. Some advice on when/how that stops...please. He can roll a ball back and forth while sitting. He rather enjoys that game (as does Jackson). He loves reading books and turning pages. He listens to Michael Buble and "dances" to the music! :) He copies sounds that we make and tries to figure out change in pitch. He doesn't like it when we "make" him hold something....he would rather do it himself. When laying on his back he lifts his bottom up and down in the air by pushing down on his feet, while laughing! What a goof! He loves Jackson and often tries to imitate his bark with a grunt when he hears him barking.



Here's some pictures of Jacob from this week.



Standing and holding onto the coffee table. He mostly just stands there and looks around. He's not confident enough to move anywhere yet!
Fell asleep in his crib...after about 30 minutes of rotating. This is how he ended up!

Best Buds!

Jacob "singing" and "dancing" to Michael Buble. He thought his sock made a good stage prop, until he threw it on the floor! :)

This picture was my doing. I opened the drawer in his room to see what he'd do. As I was putting things away in his room, he thought it would be fun to pull things out, so I'd have more to put away. Wasn't that thoughtful of him?

Now to Superbowl Sunday...

Our small group usually meets on Sunday nights. So we decided to meet at the Beasley's house and watch the game together. Jacob wasn't feeling his best, but he wasn't horrible either, so we decided to go. Here's a picture of Sam and Jacob together on the couch. Sam loves Jacob and was trying to sit in his lap and play with him all night. Here's a couple of pictures of the two of them. I can't wait for the day when Jacob can run around with Sam on Sunday nights! :)

Trying to hug! :)

Thanks for checking in with us this week.

100th Post...

I'll be honest...I never thought this blog would reach 100 posts. When we started this blog, we weren't sure how long we'd be needing to update on Jacob's health, if at all. However, here we are...100 posts later, with millions of miracles in between. God has been good to us! Thank you for investing your time and prayers on behalf of our family. Here's to hundreds more!



Jacob is still fighting his cold, but we do feel like its getting a little better. Poor guy, he doesn't even know he's sick. He's got snot coming out of his nose and he's just smiling away! He's coughing throughout the day, yet, he plays like nothing is wrong. He's sounds like a frog when he makes noise, but he still makes it...trust me! He's been satting great and has not needed any extra oxygen throughout this cold. What a trooper!



On the developmental side of things...there's only a few things to report about Jacob's progress. He is not "scooting" per say, but he has found a way to maneuver himself completely around in his crib. I walked into his room to check on him during a "nap" and found his head on the opposite end of the bed from where I left him and he was "talking" to himself. :) Here's the pic of how I found him.

He also has gotten alot stronger in the past few weeks and his "throwing" arm (he's a lefty we think) is definitely stronger! He is constantly picking things up and throwing them back down. He always reaches for things just to see if he can tip them over or pull them down. Lovely! Here's a sequence of pictures of him doing just that...

Also, good news...we scheduled our sleep study for April 9th. This will be the true test to see if Jacob will be ready to come off oxygen. You can mark it on your calendars if you want and be praying for Jacob to really show these doctors what he's made of!

Thanks for checking in with us. Have a great day!

Boo....

Jacob has a cold...and not just any cold...a coughing, sneezing, sucking the snot out of his nose all the time cold. We were at Vanderbilt last week 3 times, and I'm sure that's where he got this bug! His first real symptoms showed up on Wednesday evening and it's still hanging around and getting worse in the past few days. We'd appreciate any prayers for our tough guy! We want him to kick this cold to the curb!

Thanks!