Is it really possible that I haven't blogged in a month?!?! Things have been crazier around here than usual...but I had no idea that it had been so long! Time flies...

I'm not even sure where to begin. I still have videos I want to post, pictures, thoughts, what God's been doing in my life... How to get it all down? An abbreviated version for now, I guess.

Judah is doing so well! Since getting over his Bronchial RSV he's been healthy. I think that the daily Pulmicort (an inhaled steroid we use to keep his lungs open and prevent upper respiratory problems) is making the difference. He's still eating well. I keep waiting for him to just stop and then go backwards. To just decide that he's not going to eat after all. But I think he's too fond of macaroni and cheese...with avocado and sour cream:) Speaking of which, we saw his Endocrinologist on Tuesday. I was eager to see how much Judah had grown in the last 3 months, especially with the 2 week lapse in growth hormone. And he hadn't been weighed in about a month, so I was wondering how his weight gain was coming. He grew 2 3/4 in. and is now 18 1/2 lbs! He's in 6-9/9 mo. clothes, and is definitely on his way to catching up with his peers. OK, so it'll be awhile before he's actually the size he should be for his age, but he'll get there. His therapy is going really well, too! We just love his ladies and their care for him, as well as their creativity, resourcefulness, and patience. Judah's 6 month IFSP review is coming up next month, so we were talking about goals he's met and new ones we want to add for the next 6 months. His OT is confident that within the next 6 months he'll be crawling! As it is, he has fine-tuned his current scoot, making it more effective and FAST! That little one can get anywhere he wants to...including pushing his brothers' bedroom door open and scooting in there. He instinctively knows that there are colorful, exciting, tiny little things in there that he should not have, and he wants them! His PT was here this week, and Judah showed huuuge improvement in weight-bearing. She got him up on his feet quickly (up to that day Little Stinker would make like a wet noodle and really make her work for it) and he spent several minutes standing with her. So long, in fact, that he didn't have to go in his stander that day! Then, before my very eyes, she had him taking little steps! I've still gotta get video of it, but I've gotten him to take steps to Daddy, and even "Auntie" last night! I can't even put into words the thrill I feel when I see him taking steps...even as supported as they are. It is a huge accomplishment! And another reminder that no one can tell us that Judah won't or can't do something. He's going to reach every milestone that God has ordained for him, and we are going to help him get there!

The palate repair has been pushed back to April to allow the scar tissue in his mouth to heal and soften more thoroughly. I have no problem putting it off. I still struggle emotionally and mentally with this revision, so quite honestly, I'm glad I don't have to deal with it just yet. And then we also put off possibly finding out that he's going to aspirate even after the repair. I don't know what to do with the possibility that the repair might not fix the aspirating...so, I have a little more time to not think about that, too. I know, not the healthiest way to deal with things, but it is what it is right now.

The growth hormone is still in process. I was just on the phone with the doctor's office again yesterday, and I think we're finally closing in on the resolution. I have 2 weeks worth of medication left in the interim pen we got from the manufacturer, so hopefully this will be resolved by the time we run out. Again. Speaking of meds, we went to pick up his hydro cortisone the other day (the drug that basically keeps him alive) and were told that Medicaid no longer covers any ingredients in that drug. Hm. Still waiting for a call back from our new case worker...who will be hearing from me again on Monday:) Oh the joys of insurance and expensive, life-sustaining medication!

Today is a big day for us. We're praying about building. God has done a major transformation in my heart, and I am dying to get out to our MW school district to be near "our kids"! That's a long story in and of itself. One that's on my list to post about...eventually. Anyway, we're praying about building so that we can get the house that will meet our needs, as well as those of my parents when they move out here to live with us in a couple years. Oh ya, the big day. Today we're looking at 3 Hearthstone models! And we're also looking at building in the same neighborhood some great friends live in...which just happens to be in the exact location that Jared wanted to land. West of 150th and South of Q. We also need to look at carpet stuff today, because we're replacing ours before we put it back on the market. And we're watching "The Lion, The Witch, and The Wardrobe" with our kids this morning, since we just finished reading it. Wow, we have a busy day planned. I'd better sign off.

If you think of it, pray for us! There are big, big decisions in our very near future, and our biggest desire is to follow God. Thanks!

Victory!

I wish every person that reads this blog could see Judah in person to be able to fully appreciate the incredible improvements and progress he's made in just the last month! That boy is so on a roll, and it's been an amazing leg of his journey. I feel immeasurably blessed to be a part of his journey!

He's in a new size! 6-9 months - bring on the new clothes!! It's fun to see him changing as his body grows. He's thinned out somewhat and he looks older. And he can finally wear shoes - victory!

Judah is learning the words "No, no" and "that's not for you". He's finally reached a stage in which he can get to things and into things that he shouldn't - victory! As I write Judah has managed to get himself completely under our tree so he can reach that one illusive ornament he must have! I can't help but smile and feel an incredible amount of pride:)

Judah also started waving a couple weeks ago. We were saying bye-bye to Daddy,

and he just started waving both hands like crazy! His is probably the most enthusiastic wave I have ever seen. And he waves to just about everybody on cue! Meaning, I have added "wave" to the

list of words Judah understands - victory!

After several months of repetitive efforts made by Mommy & Daddy...and Lydia, Judah now signs "all done" & "more" - victory!

My Little Lion has also become somewhat of a

Little Piggy. He eats like he's making up for lost

time! He has a target calorie range per day, and on average he's at the very high end of that...and over on some days. He's only getting water through his tube during the day & overnight, and just 4 oz. of whole milk/Carnation after he's already asleep - victory!

Judah is sitting up! Most of the time he has to hold himself up with his arms, but he can balance hands-free for a couple minutes at a time - victory!

We also got Judah's new stander! It's awesome, but the best part is knowing that Judah is strong enough and far enough along in his development to tolerate it. And he got to this point much sooner than I thought he would - victory!

It's been such a cool experience to see God's work in Judah's life lately. He brought Jud

ah through a tough, long bout with RSV bronchialitis without

a hospitalization; and has provided an allergist/pulmonologist who is kind and pro-active. He has provided an IFSP team that genuinely loves him and wants to see him succeed, thereby providing the best possible help for him and "training" for me. God has delighted us with this charming, jolly, affectionate little boy; and I know that it's God who has allowed Judah all of these successes! He holds Judah in His hand, and I believe that He rejoices with us over every small victory.

Medication Update

I'm officially trying not to be anxious now that we're on the 3rd day past needing a new Norditropin "pen". I've been on the phone multiple times with our Walgreens Infusion case manager, the W.I. intake person, the doctor's office, and a Medicaid case manager. W.I. seems to be playing a little bit of phone tag with the doctor's office, but at least the calls are being made. Once W.I. has the information they need from the doctor's office for Medicaid, then the ball will be in Medicaid's court...and I have no idea how long it will take for them to give approval to W.I. for delivery so we can resume Judah's treatment. I'm not really sure my phone calls are in any way effective. Or if they're just frustrating the people I'm calling. But the phrase "The squeaky wheel..." keeps running through my mind. I'm doing my best to be respectful when I call, and not give the impression of laying blame at any one's feet. I'm not sure who's at fault, and it certainly wasn't intentional. I just keep telling the people I talk to (or the voicemail systems) that I'm only looking for a status report and making sure things are progressing for Judah. Because really, somebody has to be responsible for the overall care of and advocacy for Judah, and that person is me. I take that God-given responsibility and privilege very seriously. Well, enough said. Thanks for praying dear friends and family...and even if I've never met you, I include you in that statement, because you're invested, too. I'll keep you posted!

A Prayer Request

This quick note is just to make you all aware of a...hiccup, so to speak, with Judah's growth hormone medication. It was all set to be delivered here on Tuesday, but this morning our Norditropin case manager (whom I looove, by the way) called me to let me know that Medicaid has denied coverage of this drug due to non-compliance during the summer months. Remember with me now, that was when Judah was vomiting on the old medication, Nutropin, and we had several weeks of being on and off again until the dr. finally took him off for good. He then gave us a sample pen of the new drug, Norditropin, to try to make sure that Judah could tolerate it. We used 2 sample pens while we waited for the insurance company to switch over to covering the new drug...which involved lots and lots of paperwork and documentation, from what I understand. Apparently, somewhere in there, Medicaid thinks that the doctor didn't "follow the rules" and so is refusing coverage. It's complicated and I don't really understand it myself; but here's the bottom line: Judah needs this medication or he won't grow. It's hard not to become discouraged because of everything we went through over the summer. We finally got into a pattern of using the drug every night, no vomiting, and GROWTH; and now this.

So, while you all pray about this with me, I will choose to believe and remember that God saw this coming, and He's totally in control. No matter the outcome.

Thanks for praying!

I just couldn't wait...

...any longer to get this down! I'm so way behind on my posts, but I just got my "new" computer all set up today (thank you, thank you, so, so much Mr. & Mrs. Gus!!!), and I was going to do everything in order. I have posts written in a notebook, and then there's all the things I want to say about how Judah is doing lately - which is FANTASTIC (well, developmentally...not really physically so much since he's just getting over RSV Bronchialitis...which did NOT land him in the hospital like the other 2 bouts with it did - PTL!!), but I just can't wait any longer before getting this wonderful-ness down on "paper"! Judah. Ate. Two. Full. Meals. Today. Orally. Without any supplementing through his button. DO YOU KNOW HOW WONDERFUL THAT IS?!?!?! 10 months ago Judah got an NG tube, because he was no longer eating what he needed to on his own. Today is the first day in 10 months that he has eaten an entire meal all on his own...and he did it TWICE! That's over 400 calories that he chewed and swallowed! Which means that I haven't given him any nutrition through his G Button...except for water. The child needs LOTS of water. Anyway, like I said, I just couldn't NOT say anything about this any longer. Praise Jesus! Hallelujah! Seriously, Lord, THANK YOU! OK, let the tears of joy commence!:)

Operation Christmas Child

We've wanted to participate in this amazing ministry to children for the last couple of years, but have never been financially prepared. Last year at Christmastime we got smart. Instead of financing a family date, we decided to use our annual can-collecting money for shoe boxes instead. We had just started re-collecting again after cashing in cans in August, so we had another year to add to that collection. Eli took that on as his own personal project, but we all helped throughout the next 11 months. Finally, just last week, we were ready to cash 'em in and go shopping! Thanks to Groupon, we got to go out for pizza and make it a fun family date night after all! Funny story: our multiple H-U-G-E bags F-U-L-L of cans got us a whopping $4.35. But the money that came out of our own pockets was well worth the entire experience. The kids each had fun picking out items for their boxes. It was cool for Jared & I to see our kids get excited about giving, and also take ownership of "their" kids! Lydia has been calling the girl that will get her box her "little girlfriend". We also decided to have each of the kids send along a personal note and picture. (I'm secretly praying that they will hear back from their new "friends", but we'll see.) I will forever hold on to a copy of each letter:) It was special for me to pack the boxes with the kids; and both Jared and I were excited with them as they each carried their box into church on Sunday. I'm already looking forward to doing this again next year. The lessons in generosity, love, compassion, and grace that are involved in a project like this are priceless; and I'm also praying that they're lessons my kids will learn well and carry with them into adulthood.

Merry Christmas!

Eli's Letter:

Hi! My name is Eli. I am from Nebraska, in the U.S. I'm eight years old. I'm in third grade. I like to draw, eat, and build legos. I got you some Hot Wheel cars, a pad with paper, markers, crayons, and more. I hope you like them. I have two more brothers, Ezra and Judah. And a sister, Lydia. I also have a mom and dad. Please send a note back here.

From,

Eli

Ezra's Letter: (The first 4 sentences he wrote by himself while I spelled out the words. Then he decided that was too much work & I could write out the rest for him!)

Hi mY Name is Ezra. I am 5. I like to pLay Basketball aNd Football. I hope You Like Your box. I hope you like this note. I'm very glad that I can send this shoe box gift to you. This picture is of me, my two brothers, and my dad. The one in the orange shirt is Eli. The one on my dad's lap is Judah. I also have a mom and sister, Lydia. I put some really cool things in your shoebox. Please send me a note. Merry Christmas!

From,

Ezra

Lydia's Letter: (The only thing I helped her with was where she lives.)

My name is Lydia. I love you very much. I sent you a piggy. I hope you like your presents. I picked them out for you. This is my baby brother Judah. [She included a picture of herself holding Judah...of course!] I have 2 big brothers Elijah and Ezra. I live in Omaha, Nebraska, USA. I like to play with my toy ponies. I love my mommy's soup. I got you a new toothbrush and your own toothpaste. I like to drink milk. My favorite color is pink. Merry Christmas!

Love,

Lydia Stewart

Grief Re-Revisited

Emotionally I think I've been doing pretty well lately...at least as far as Judah is concerned. I don't normally struggle with his delays, and I don't often think of things that we've lost or missed out on because of his illnesses. Well...

A couple weeks ago we were enjoying a glorious fall day at the zoo. Grandma & Grandpa were with us and we were having a great time. At one point I noticed a mom alone with her son, who looked to be right around a year old. She was holding him, and when she put him down, I chuckled as I watched him take those adorable, tentative toddler steps. Then, a sharp intake of breath as I felt a "punch in the gut". I realized (again) that I won't experience that with Judah. I felt sad all over again, and then frustrated with myself. "You're not over this yet?" "Come on, move on already." "Look at all the wonderful things he's doing; all the progress he's made!" Gr. Someday my little lion will walk. He will take those first, tentative steps. He won't be a little toddler anymore, but he will get there. And that day will hold more celebration and victory than the day a "normal" toddler would take his/her 1st steps. But, on this day at the zoo, I was sad.

From Jared's Computer

I miss my computer. Some good friends have gifted us with their PC - yay! - but it's still in WI. So, out of sheer desperation, this post (and all following) originated on paper. I just have so many thoughts and words and updates floating around in my head, I had to do something. Take action! Well, it's been so long, that this is gonna take awhile. So, without further ado...

In Mid-October Judah got his braces. They're so cute! He doesn't mind them at all, and has had no problem adjusting to the new "things" on his feet.

*Funny story: Judah's feet are 3 1/2 inches long. Size 1. That's the size of a 6 week - 3 month old. His feet are small even for him!

Anyway, along with the new AFOs came the re-introduction to the stander. Wonders never cease, because from the 2nd 1st time in that thing he has loved it! For 30 minutes a day he's

upright, and he loves playing with toys on the tray and watching everything that's going on around him! Thankyou, Jesus! When his trunk is stronger (he's close), he'll move to a smaller stander that supports him from the waist down. No idea when that will be, but it's fun to think about him making that much progress within the near-ish future!

Judah is also eating like a champ! He's at 1 1/2 jars of stage 2 baby food, plus cereal to thicken & add texture, 3 times a day, and is right on track to be at 2 full jars within the next couple of weeks. I've also been able to trade out 2 oz. of formula with whole milk at every feed. That means that he's now getting HALF whole milk and half formula - YES! At Thanksgiving we'll start introducing table foods a tsp. at a time with his baby food. I'm excited about transitioning to normal food, too. These are all steps toward our goal of getting Judah on a normal diet, and we might actually be able to do it by his 2nd birthday after all!

*Good news: Judah has grown 2 1/2 in. & the doctor increased his growth hormone dose!

*"Bad" news: Judah has not gained any weight in over 2 months. He's still around 16 1/2 lbs. So, now we need to start pushing a high calorie diet - heavy whipping cream, butter, sour cream, Carnation... Ya know, a diet that would kill a normal person;)

Overall, Judah is progressing consistently and quickly, and I'm amazed at how far he's come in this area in just 2 months!

While I'm talking about food, I got the results of his allergy blood work. Both egg & peanut allergies came back low - praise the Lord - so we're doing an egg challenge in December. My prayer is that the challenge will show that he can handle egg; and that, over time, he will outgrow the peanut allergy as well.

It's kinda funny the things we celebrate with Judah. Things we never thought of as "good" with the other 3. Perfect example: Judah is finally getting into things!!! You can't leave him on the floor in the vicinity of anything he shouldn't have. That determined, driven, motivated little boy will find a way to get to what he wants: roll, rock-n-scoot, or a combination of both! It's so fun to see him getting into the kids' stuff and see them try to distract him, move him, or actually get a little frustrated with him!

Another "celebrate"- Judah started clapping! Oh, those chubby little hands coming together to clap:)

While we were in KC, [an amazing, wonderful, romantic, life-giving weekend! Thanks again SO MUCH to those dear, wonderful friends who blessed us with spending money; and to our Donna who hooked us up with a sweet suite!] Judah had another first. The closet doors in our room were huge mirrors and we discovered that Judah liked looking at himself, and could actually hold himself up in a sitting position! This picture is of him in his "therapy corner", the place we set up for him in our p

layroom. Yes, he's so vain he has his own mirror. It's good "therapy"!;)

Instead of Halloween, we had a

Stewart Family Fun Night Extravaganza! The kids painted Thanksgiving-themed pumpkins, then got all dressed up and

headed

outside for a scavenger hunt that Jared & I had a blast putting together for them. They had to find & follow clues all over the yard, until they found the jackpot: a basket of candy and silly bands! It was a great night:)

The last thing to add is the new "girl date" that Lydia & I are blessed to be a part of every Thursday morning. A small group of us "youth leaders' wives" get together at a local church (one of the lady's), enjoy free childcare in the HUGE nursery (Lydia absolutely loooves her girlfriends there and talks about them all week), and then sit around a small table talking and drinking coffee for TWO HOURS! No programming, no plan, just community and girl talk. I have never been a part of a group that filled me up the way this one does. I had no idea that I was running on empty until these women started filling me up to overflowing. Laughter, encouragement, advice, support, shared experiences & perspectives, as well as different ones - all adding up to a life-giving experience each week that I hate to leave and can't wait to get back to! These are women, friends, that I can do life with; and my life is and will be so much richer because of them.

The CDC

We spent the morning with Judah at the Children's Developmental Clinic at the new Children's Hospital Specialty Pediatric Center. That's a lot of words to say we were in clinic all morning. We had to be there at 8, and for some reason, after seeing 8 different specialists over 4 hours, I'm a little tired. Still, I had to get here just to say that every single specialist we saw was impressed with how far Judah has come in the 9 months since we were there, and all had almost nothing but positive things to say about him and his progress! It was wonderful:) There were only 2 doctors that have any kind of follow-up in the near future.

Urology - the good news is that Judah has had some progress in this area. The "bad" news is that because of that progress, Judah will have 2 little inguinal hernias repaired...most likely during his palate revision in February. Thankfully it's a minor repair that can be combined with this other surgery.

Genetics - Since seeing this wonderful lady in July (we love our geneticist), a new Micro Array test has been developed. It will not only look at all of Judah's chromosomes, but will also target certain genes that are known for causing birth defects and learning difficulties in children. Because he's having surgery and will be in-patient, she can order the test after he's admitted, and avoid having to get pre-authorization from insurance. That way the insurance company can't say "NO", and we have another opportunity to look for a cause.

We don't have to go back to the CDC until next year!

That's really all that's noteworthy for right now. The pictures and video of his braces and stander will have to wait for another day. But let's just say Judah's doing awesome!:)