Friday, December 17, 2010

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!

Friday, December 10, 2010

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!

Wednesday, December 8, 2010

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!:)

Tuesday, November 23, 2010

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.

Saturday, November 20, 2010

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.

Wednesday, November 3, 2010

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!:)

Monday, October 25, 2010

Camp-Out!

We tried going camping all summer, and, except for our trip to KC, just couldn't make it happen...until the middle of October! Better late then never:) This has been the most beautiful fall I can remember - sunny & 70s almost every day - so the weather was perfect for a fall camp-out. The kids had such a blast playing outside all weekend: campfires, playgrounds, "a-ventures" in the woods, mini-golfing, s'mores, games, and dirt! All the ingredients for a Stewart kiddo's dream vacation! Judah had fun, too. He was happy and content no matter what we were doing, and had fun playing with and watching his siblings. As long as they're along, Judah's OK with anything!


S'mores time! And anytime there's a chance to get in a picture with Judah, Lydia's there!



Swinging with Eli



Miniature golfing! Fun course, but no holes in 1 this time.



Cuddling by the fire



Classic game of War - a family favorite:)

Wednesday, October 20, 2010

Faith Walk

I think those 2 words sum up my life and my life with Jared perfectly. I had no idea that's what I was signing up for when I said yes to Jesus at the tender age of 3, then again when I said yes to PNG at 16, then yes again when I started Bible school at 20, and finally when I said yes to Him and him at 21. I fully realize that now, and also understand that walking by faith is a choice...and a privilege. I have seen the overwhelming blessings and benefits of faith-walking more in the last 20 months than in all the other years of my life combined! Not to mention the fact that choosing to live by faith, taking big and small steps of faith, totally trusting God to provide and make a way is much more exciting than the alternative. I like being in control and having a plan, but I have to admit that in the last year-and-a-half I have decided that I don't really want to be in control and make my plans happen, because God's plans, purposes, and timing are perfect for me and my family...even when I don't understand it.

The newest step in this faith walk has had to do with Jared's car. On Monday he found out that the Hot Rod needs about $800+ in exhaust parts, plus labor. Ouch. Thankfully, Jared didn't consult me about this, but just decided that he should sell the car and go from there. (That's right, I like it when my husband sometimes makes decisions without my input. It means he's the man, he's the head of this family, and I don't have to worry about everything. It's comforting and makes me feel secure. Anyway...) The scary parts about that were not knowing if it would even sell so we could have some money for another car, and the fact that we have no money for another car. Well, God already took care of the 1st half of that. Yesterday evening, as we were getting ready for Tribe, God sold that car for $450. No advertising, just a sign in the window, and all of a sudden it's gone! Now for the 2nd half. I could freak out now that we're down to 1 vehicle, have no prospects and virtually no money for a replacement; but God has given me His peace. And a lot of experience in trusting Him with impossible situations. On Tuesday a friend from work loaned Jared his truck for a few days, and I know that at just the right moment God will bring the right vehicle along. I have no idea how this will all work out, but that's part of the fun and privilege of living this way. We get to see God work and move and provide on our behalf...because He loves us and delights in us. Because we are His, and He has promised to care for us. Obviously that promise doesn't automatically include a new car. But I believe that whatever His provision looks like, it will be exactly what we need at exactly the right time, and He will provide the means to attain it. Lord, I praise You now for what You have done, what You are doing, and what You will do in us and for us.

Another step of this walk has been our house. Our contract ended this month, and we had to make a quick decision about what to do. Trusting God's leading, we decided to take it off the market through the Holidays, and then re-list in January. It's been nice taking a break, and I feel relief. *sigh* (That's a sigh of relief, in case you didn't catch that.) We're not sure what God will do here, either. We're so eager to move closer to our MW kids, but at the same time, I'm so attached to our IFSP team and the regional planning team here in Ralston. Lydia's been evangelizing Judah's ladies with her Cubbies Bible verses, and everything that happens at Cubbies:), so God might not be done with us here yet. These ladies are in our home every week, so there are lots of opportunities for them to see Jesus. Again, it's a matter of trusting God's plan and timing...trusting Him and His goodness & faithfulness!

Totally changing the subject... My washing machine has been out of commission for a few days. It's been leaking, so I've only been doing the most necessary laundry. You can imagine the piles that have accumulated. This morning the washing machine man came to fix it. I never would have said this pre-front loading washer, but I'm so excited that my washer is fixed and I can do my laundry!! I looove my washer, and I missed it! Thankyou, Jesus, that it's fixed! I have a huge load in there right now:)

Tuesday, October 19, 2010

Guess who's GROWING??

I was going to save that wonderful piece of news for the end of this post, but I just couldn't wait! We saw Endocrinology yesterday, and the dr. was very pleased to see that Judah has grown TWO inches in four months!!! He is 25 1/2 inches long, and growing! I knew he had to have started growing - finally - because his little feet are at the edge of his infant carseat - finally! That's the best news we got yesterday, but the entire visit was a positive one:) If Judah's growth hormone levels come back at a certain marker, the dr. will increase his dose, because he wants him to be able to catch up faster. Judah is also showing growth and signs of improvement in his...little boy...area. That's good news, because that means that there are no tests or extra blood work to run right now, which is something we had talked about in August. We're in a "watch" phase right now. Finally, depending on Judah's blood work, we may be able to switch from the liquid form of Sinthroid to pill form. I could crush the pill and feed it to him through his tube. This is good news, because then I wouldn't be at Walgreens every 7 days to pick up this prescription - it's a 30 day:)

Lord, thank YOU for Your amazing care of Judah, for Your lovingkindness, and for Your grace! God, for some reason You have created Judah with illnesses, but in the midst of that You have gifted him with good health, growth, progress, and amazing healthcare and service providers. God, You are good. All the time. No matter what. Thanks for Judah!

Sunday, October 17, 2010

The "Judah Crawl"



The Army Crawl has a whole new look - and it's a cute one! Judah is finally learning how to propel himself forward...ever so slightly and slowly. It's a little tougher on carpet, but he's doing it! What fun, and how amazingly proud we are of him:) Wouldn't it be great if we all had such enthusiastic cheering sections for every walk of life? Go Judah!!!

Btw, we had a great time camping this weekend! Judah did awesome on his first real camp-out, of course, and the rest of us had fun playing, hiking, and eating camp food! I'm looking forward to posting some pictures soon.

Thursday, October 14, 2010

He's on a roll!

The good times just keep comin' around here, and I can't say enough how thankful I am to the Lord for this season of victories and "happy" He has given to us!

Judah has all of a sudden decided that he's going to eat a half-jar of baby food at every sitting, 3 times a day. That's a jar-and-a-half a day, people! Including the small amount of baby cereal I add to that to thicken it a little more for him. Another exciting thing about his feeds is how well and how quickly he's learning to eat. I have always taken for granted all the coordination that goes into eating, simply taking a bite. See spoon. Open mouth. Get food off spoon. Chew. Swallow. See spoon. Open mouth. And on and on it goes. Tube-fed babies don't get that, so it becomes a learned art, and my baby is learnin' away! He's finally making the connection to open his mouth when he sees the spoon...and he's not blowing quite so much out of his nose:)
video

Yesterday we had therapy with our OT, and our Services Coordinator came along for her monthly visit. What a fun visit! His OT celebrated with me when she heard about Judah's feeding success, and then we all celebrated some more when I told them about his ophthalmology appointment from the day before. The best part, though, came towards the end of "floor time". Judah saw Lydia's Cubbie book* laying on the floor just out of his reach. Over the last few weeks he has showed more and more interest in trying to reach things, but today he finally made a move! He did one tiny little tummy "crawl"...and then did another when we moved the book away again! Did you catch that? He moved forward all by himself!TWICE! Now, that was cause for celebration, and did we ever!:) I've said it before, but I'll say it again: these ladies that God has put in our lives to serve Judah and our family are invaluable to us! Their faithful support, encouragement, and genuine love for and excitement over Judah is priceless. Our time with them is sadly temporary (only until Judah's 3rd birthday), and I am determined to enjoy and learn from every moment we have with them!

*Lydia has become our resident evangelist. She loves Judah's Ladies, too, and always vies for their attention when they're here. She beams under their praise and encouragement when she helps with "therapy", and she colors pictures for them:) Lately, she's been telling them all about Cubbies. She brings out her vest, her book, and her mad memorizing skills, and tells them all her Bible verses! It's awesome..."from the mouths of babes", you know. She is a little light already, and her sweet spirit only makes her that much more endearing.

Tuesday, October 12, 2010

Another Dose of Good News!!

Good news from GI, and now from Ophthalmology! Our appointment ran sooo long. We were there for 2 1/4 hours! But, it was all worth it in the end:) Let's break it down:

* Judah's alignment looks good, which means the Botox is working & Judah's brain is working, and we don't need to consider another injection or eye muscle surgery any time soon!

* Judah's far-sightedness has actually improved slightly, which means NO GLASSES!

* Judah no longer needs to be patched to avoid lazy eye!

After discussing all of this I was so excited! In mid-celebration the doctor looked into my eyes and said, "God is good". That just made me even happier! I said, "Absolutely!" We had a little, tiny praise fest right there in the doctor's office!

2 issues remain for Judah:

*He is unable to move his eyes to the right. He compensates by turning his head. This could be a developmental delay, but even if it never corrects, it's not anything major.

*He has droopy eyelids. People who don't know him always think he's on the verge of a nap. It's kinda funny sometimes. Anyway, for now they don't interfere with his vision, but this is something that's always in the back of the dr.'s mind. He wants to wait and see how Judah's face changes as he grows. Should the droopiness ever effect his vision, it can be surgically corrected. That's a long way down the road, though.

So, as of now, we have 5 1/2 months - that's right, FIVE & A HALF MONTHS - before we need to go back, and we have nothing to do with his eyes before then! No patching, nothing! Praise the Lord!

On a side note... On the way home from this visit, I was thinking about how ridiculously happy I was feeling. Some people that read this blog probably think I'm over the top...I overreact...I'm way too emotional. Well, I am...to an extent. I feel things deeply. That's really hard sometimes, because when I'm low, I'm really low. Sad things are really sad. Hard things are really hard. The good thing about that, though, is that those emotions push me to run to Jesus, because of how deeply I feel. Another good thing is that when it's time to celebrate - when there's even a little bit of good news, a little bit of happy - I really celebrate, and I'm really happy! So, here's to being really happy about this appointment, Judah's improvement, God's touch on his little body:)

GOD. IS. GOOD.

Monday, October 11, 2010

Random...

I don't have a whole lot to say at the moment. Shocking, I know. I'm sure as I go along thoughts I don't even know I have will suddenly come to the surface of my brain and make their way through my fingers. Anyway...

Judah's fighting a little cold right now, but is, naturally, just as jolly as ever. Nothing gets him down...except of course his stander. Thankfully we still haven't had to use it again. He got measured for his braces last week (the orthotist said they were some of the smallest EVER), and now we wait for insurance to weigh in, and then for everything to be sent to the manufacturer. About a month total. Lydia picked out the design of the braces. She went with the jungle theme, because it has lions on it:) The braces are going to be so small they'll probably only have one little animal on there! As long as it's a lion...

It's been weird lately, but I keep thinking about the fact that Judah is a really old baby. Maybe now that I said it "out loud" I can move on to thinking about something else. It's just odd, really. You have this baby, this infant, that you love and adore and are so thoroughly thrilled with. Baby grows so fast, gets bigger, learns new things, and is suddenly moving towards independently walking and trying things without you. I've missed out on, no just haven't yet experienced, much of that process. And the rest of the process just looks totally different for Judah. 16 months later I'm still caring for an infant. He's learning and (hopefully) growing, but at a much different pace. It's just...kinda weird. That's all I really have to say about that.

My other 3 monkeys are doing well and keeping me busy. I'm tired pretty much all the time, but it's the good kind of tired. The kind that you get from having fun, using your brain to it's organizational and creativity max, and working hard towards an excellent & incredibly rewarding end. I have great kids. Amazing, really, and I love them beyond reason! They do, however, make me crazy!

Jared's schedule has been hard to deal with these last 4 weeks. Crazy busy that leaves him distracted. He's been doing a good job of comp-ing time and finding creative ways to make up for his extra time away from home, but it's hard when he's gone extra evenings or weekends. The kids really miss him; especially Eli & Ezra who are at school all day when Jared might be home for awhile. We're going camping this weekend - FINALLY! We've been trying for months, but the weather never cooperated, and I don't take chances like that with Judah. Cold and wet are not a good combination for him. Anyway, I'm super excited! 70s & sun through the weekend, so Mahoney, here we come! Family time, relaxing, playing, saying "Yes!", good food, campfires...I'm so ready for this! The boys have off on Friday, too, so that makes it even better:)

My parents are coming at the end of the month. Since Judah was born we've seen them almost every month, I think. That little boy pretty much guarantees lots of extra visits from Grandma & Gramps! This time we had a little bit of a longer stretch: almost 3 months. Well, that time has gotten a little shorter since Grandma & Grandpa decided that they could come a couple days earlier...and, well, may as well just come over the weekend then...and, well, the boys are off Thurs. & Fri. so why not come a couple more days early? They landed on the 29th, and every morning Lydia starts the day with, "Now how many more days?" 17. I've missed my parents a little more lately. When Jared works more, or there's hard stuff with Judah, or I see my friends with their moms...I miss mine more. I'm so thankful for these years that we've lived apart, because we have become our own family - the Stewarts - and have learned to depend more fully on God and each other. But, I look forward to the day that Mom & Dad plan to move out here, too. Reeeaaally, really look forward to that:)

Speaking of their visit... Jared informed me that when they come, we're leaving the very next day for a weekend away in Kansas City! At first, I wasn't very excited. I was thinking "How can we leave Mom & Dad like that?" and "What about the kids" and "Are Mom & Dad OK with that?" etc. However, I got over that pretty quick. The more I think about it the more excited I get. In 9 years (since I got pregnant with Eli) we've had 3 in-town overnights. We haven't "gone away" together, and certainly not for more than 1 night! We'll have Judah with us, but I just almost can't imagine what it's going to be like to have 36+ hours to ourselves! I'm having a lot of fun trying, though:) I've been uptight about the money this adventure will require. Today Jared told me that if I mention that one more time, he might just go without me. I decided to just let it go then.

Tomorrow we see Judah's ophthalmologist. Hopefully the alignment of his weak eye still looks good and his vision has stayed the same or improved. If these things look good, then we avoid another Botox injection and glasses. Glasses. Can you imagine?! Well, he'd be the cutest little 4 eyes ever! Still, let's not go down that road. Hear me, Lord? Enough is enough for right now.

Maybe I should listen to myself and call it quits here. See? I knew my brain & fingers would take over and I'd suddenly have a chapter written! So, in the words of my best friend, "Nitey nite".

Monday, October 4, 2010

And "The Lists" Grow

I'm just frustrated. I wasn't supposed to have to write a blog about this. I thought it was nothing; just an over-cautious, cover-our-bases kind of thing. Certainly not something I was going to have to sit down and spend time writing about. Yet, here I sit. Gr.

"The Lists" - Judah has 3. Medical diagnoses/Issues, Medical Professionals/Service Providers, & Medications. I don't have a number for the diagnoses/issues list, because...well, I don't know why. I guess it's just hard to keep up with, and it's not always black and white. It's complicated. Until this morning the professional/providers list numbered 16, not including the "extras" we see at the Children's Developmental Clinic & the Boys Town Cranio-facial clinic. The meds list numbered 11; 7 of those being daily, 3 "as needed" and 1 "in an emergency". I have now added egg & peanut allergy, Dr. M., Allergist & a junior Epinephrine pen to the lists. I know, some people will read this and think, "After that big build up, all that, that's it? A food allergy? So what! Half of the kids today have some food allergy!" Well, it's not a "so what" thing to me. It's a big deal and I'm frustrated and discouraged by it. After everything else he deals with, everything else on those lists, we now have to add these? Really? Really. Really?!?! I actually feel a little bit mad at God about this. It just seems to me that Judah had enough on his plate already, and this is something we could have lived without.

So, what this means for right now...
Judah will have to go back to the allergist for his flu shot. Because of the egg allergy, he has to have the vaccine in small doses. 4 injections over the course of an hour. That will be so wonderful for him. [Can you see the sarcasm dripping from those words?] Like he doesn't get enough injections? They'll also do a blood draw (marvelous) to determine the severity of the allergies. This doesn't really effect him that much right now, because he eats so little anyway. And whatever table food he tastes just needs to be egg-free. For now, no biggie. For later, I feel like I canNOT deal with allergies and diet overhauls. I'm already praying that Judah will outgrow these allergies!!

**Right after I wrote that sentence, Judah's PT showed up with the AFO guy. Totally forgot they were coming! I got so wrapped up in my post. Anyway, I feel a little better now that I've had time to cool off a bit... I still just don't get it. It's like the revision surgery that's coming up. Why? Why, God, have You allowed what You have? I believe firmly that God's purposes in our lives are real, good, and important; and that everything really does happen for a reason. God is imtimately involved in the details of our lives, and He loves us so much! I just don't know how to reconcile that belief with my anger and frustration right now. Jared says that's OK. This side of Heaven, this stuff probably isn't going to make sense. It's OK to feel these things - to feel - but to realize that we just need to feel, process, trust, process, feel, trust, let go, deal, and process some more. I think he's right. I will continue to feel and process and trust. God's purposes will be revealed someday. And I will continue to hold on to His promise of grace for each day.

I reeeaaally wish this didn't have to be happening to Judah. I hate the thought of him having to experience more pain and difficulty. *sigh* That's it. I got nothin' else. Just...*sigh*...

Thursday, September 30, 2010

He Got Skill

Meal time has gotten pretty exciting around here lately. Judah has learned a new skill. Thanks to the cleft that remains in his palate, Judah has fine-tuned the ability to blow food out his nose. He gave Daddy a pretty good "shower" at supper tonight. I couldn't stop laughing! Naturally, the only thing left to do was grab the video camera. Let the good times roll!

Sunday, September 26, 2010

GI Appointment

Judah saw his GI doctor on Friday, and I left feeling more excited than I have after a doctor's visit in a long time! Judah's doing really well as far as this specialty area is concerned - yay! So well, in fact, that after discussing Judah's need for Prevacid (acid reflux medication) and my desire to begin weaning him off of it soon, Dr. Z. said that he was fine with me going from twice a day to once! Yippee!! When Judah stops aspirating we can talk about getting rid of it altogether. I am so fine with that. I was very happy to get the response from him that I did, so I can wait for a few more months before weaning off of Prevacid completely. The other good news is that I can start introducing whole milk! I am sooo over formula. I've hated it since day 1, so adding milk is a big deal and an answer to prayer. And it's another step closer to our goal of getting Judah on a normal diet. As long as he tolerates the milk well, then I can start trading milk for formula, ounce for ounce. Sweet.


Lydia had an icky cough, so I made her be "Dr. Lydia". She loved it!

Saturday, September 25, 2010

The "Ugly" One

I think I'm ready to write about Judah's revision surgery. It actually ties into something that's been percolating in my brain for a few months now. A dear friend of mine faced a huge disappointment, and in her process of grief and working through it, she posed the question (my paraphrase): "Does everything really happen for a reason? Maybe some things just happen." That has stuck with me all this time, primarily because I feel so strongly about my answer. And my gut reaction to her statements surprised me. At first I was angry. I was looking at her situation through my own lens of experience, comparing the grief of her disappointment to my own grief over having a sick child. Totally unfair of me, I know. I got over it quickly. My next reaction went something like this: "I absolutely cannot believe that Judah was born sick and disabled just because. By accident. I can't deal with that. I have to believe that God, in His sovereignty, has a reason." I still feel that way, but kept searching, in my own mind, for concrete evidence of that. Much later I came to the conclusion that, if we can so easily attribute good things to God, than we had better be able to attribute the "bad" things to Him as well. Not that He causes them, or purposely hurts us; but that, in His sovereignty and goodness He allows trials and pain into our lives...but only after they pass through the filter of His will. This is a Scriptural principle, but I don't know that I could point to any specific reference to prove this. No, I believe that if I studied it out, I could find several verses to support this. I just haven't done that. So far, all of this has just been in my mind. Finally, just since yesterday, I think I can better articulate what's been on my mind. Romans 8:28 and other verses that talk about being conformed into the image of His Son, or trials producing fruit in our lives are concrete evidence that hard stuff does happen for a reason, at the same time offering us hope. However, what really convinces me is not any one verse...or even a list of Scripture references. It's my life experience with Him. I have studied His Word throughout my life, very intensively in Bible school, and the conclusion that I come to is that His very character emanates from His Word. He is good and faithful, loving and gracious, kind and just, holy and merciful. Completely trustworthy. I can trust Him to allow horrible, painful, ugly things into my life for a purpose. A good one. And I can trust Him to bring about good from it, for His glory. His character is written into every word throughout Scripture, but you can only know that better and more fully by, not only studying His Word, but by living in Him. By holding on tight to Him in each and every painful circumstance. At times, by sheer blind faith. Sometimes it's so hard to accept the pain and grief, but clinging to Him is our only hope.

Life sucks. It's a fact that we are forced to live with, because there's sin in the world and we're all hopelessly lost and depraved without Him. And even when we do know Him we're still sinners. The fact remains that there is reason and purpose in our lives, because He is the Author of them. He is also the Author of hope. He is our Hope.

So, looking at Judah's next surgery through this perspective means that I still feel anger and frustration, I ask why and I let God know exactly how I feel about it. I pray for a miracle. But I trust Him with Judah and with the pain that this circumstance will bring about. I choose to believe that God will cause good to come out of this, and that part of the reason will be to bring Him glory. I cling to the Hope that is mine, and Judah's (though he doesn't yet understand that), and to the promise that someday there will be no more "whys?", because we'll be Home. I know that if He doesn't choose to heal Judah before surgery, I can trust Him with my frustration and disappointment over that. And I trust Him to equip me (and Judah somehow) for this leg of the journey.

GOD. IS. GOOD.

Friday, September 24, 2010

Judah's Stander

Judah has officially added something to his "Hate List". Right behind water, sand, and grass: the stander. I can't help but chuckle though. His little sad faces are priceless. Grandmas be forewarned: he's gonna break your heart! He settled down a little bit eventually, but overall, it's gonna be awhile before he's used to it and getting 30-45 min. at a time in there. After his initial intro. to the stander, his PT spent another 40 min. modifying it to better fit his tiny self. I'm pretty sure Judah is the littlest person to use it! With the adjustments she made, it's a much better fit...the bummer was that we had to put him back in there just to make sure;) We also discovered that we need to delay using it for a bit. The stander takes most of his weight, but does force some weight onto his feet. Well, those chunky, round little feet and ankles buckled under that little bit of weight. So, his PT requested a 'script from his pediatrician for AFO's (Ankle Foot Orthotics). Someone will come to the house to take his measurements (they'll be so tiny!) and they will custom make braces for his feet/ankles. With that support he should be able to handle the stander; and we'll also be able to use them when we're playing on the floor, trying to get him to put weight on his feet. *sigh* Little stinker. Something else, another intervention for him. While I'm extremely thankful for everything that is available to him, it is a little hard to accept that he needs more help. I think because it's another reality check that I do indeed have a "Special Needs Child". And yet I do look forward to getting the braces and being able to start using the stander daily. I don't know how long we'll be using it, but it will be necessary until he's putting weight on his feet & standing with help. Could be awhile...but then, Judah does tend to surprise me:)


Little Marshmallow Sweetie post-stander!


Thursday, September 23, 2010

A New Favorite

I think I have a new favorite book. I'm only on chapter 11 (they're short, so I'm still just at the beginning), but Mary Beth Chapman's "Choosing to SEE" is fast becoming a book that I will read over and over again. I had no idea that I shared so many similarities with her. We are both perfectionistic control freaks, melancholy, pessimistic, and are both married to amazing men who love us completely in spite of ourselves, are faithful, and are unreasonably optimistic at times! Both of us have also had to learn that we are helpless apart from God, and that He is in control - NOT us. He is our constant source of sufficiency and grace. Anyway, I just finished reading chapter 10, and just had to include an excerpt here.

[She always wanted to be a different woman from the one God made her to be, comparing herself with other women like Beth Moore, Ruth Graham, and Mother Teresa. Holy smokes, can I relate to living my life in the hopeless habit of comparing! She goes on to say...]

"But God made me the way He did and gave me the story we're living. And even though I am not your usual candidate for celebrity wifedom, I believe it is all about showing off His glory. If a lot of people are watching our faith journey, our marriage, and our family because of Steven's musical success, then that's great, because it will help to shatter the illusion that Christians are supposed to be perfect. People need to know that Christian leaders, singers, preachers, writers, whoever, are as cracked and broken as the next person. Maybe more so. Hopefully they are in positions of leadership, though, because they are serious about following Christ, and so people can see that real success in the kingdom of God is not about being strong and looking good and knowing all the right answers. It's about continually yielding oneself to Jesus and determining to take purposeful little steps of obedience, and the ragged reality that it's all about God and His grace at work in us.
I can relate with the pain and great sweeps of melancholy in the Psalms. But I can also relate with the way David always returned to his hope in the Lord. His pain was real, but so was his hope. He is the One who will cause our stories to ultimately end secure and well, right in His arms." [bold italics are mine]

Obviously I am NOT a celeb's wife...and certainly never will be. But I am married to a man who has committed his life to ministry, who is passionate about his work for the Lord, and who is slightly more of a "public figure" than the average person. The man is a networking maniac! I can't believe how many people he knows around here! But, that's beside the point. I know that through this blog, through Jared's work, and through our life experience, people are watching. They see us. Her point about God's grace and our commitment to yielding and obedience is what really struck a chord. Ach, I feel like I'm not saying this well at all. How do I communicate clearly how this one small passage in her book touched me and gave me a wonderful sense of commonality and community with this wonderful lady? Gr. I guess... From the time I started this blog, people have told me how strong I am, how strong my faith is, what an amazing mom and wife and Christian I am. This passage hit me, because she said exactly what I've felt and tried to say: It's HIM! I am lost without Him. I have dark days - many - when I feel like I'm barely treading water, just on the brink of drowning. I'm broken. It's Jesus in me, His help and grace that gives me the desire to yield myself to God and His work in me. It's grace. Ya know? There is so much pain...but there is even more hope. He is my Hope.

OK, I think that's as good as it's going to get. Thankfully, I don't have to worry about Mary Beth ever finding this humble corner of the blog world and seeing how I butchered her work! Although, if I ever did have the privilege of meeting her one day, I would thank her for her honesty and transparency. For being broken to the point that she would allow God to use her unimaginably painful story to reach out to and touch other women, creating community, and pointing us to Christ.

Tuesday, September 21, 2010

Baby Landon...

...is now face-to-face with his Creator. The God who lovingly knit him together decided to lovingly call him Home to Himself. Landon is no longer fighting and suffering. He's rejoicing! I don't understand God's ways - why God? - but... No "but". There is no "but". Not now. Why God? How does this bring You glory? How is this Your best for his family? His parents that loved him from the moment they had the privilege of laying eyes on him. God, You chose to heal him by bringing him Home. But why?

Please pray for his parents, James & Amber. Thanks.

Oh crap.

I know, not the prettiest of titles, but that's where I'm at. Oh C-R-A-P. We saw the plastic surgeon this afternoon, and heard those 2 feared words: revision surgery. Judah will be having surgery #3 sometime in (or around) February. I'm too tired to get all fired up and emotional about it right now. My other 3 have kept me hoppin' the last couple of days! I've had to use my creative skills in the discipline department more often than usual - phew! So, that ugly post will have to wait a little while.

Please, please pray with us for a miracle! Pray that God's healing hand will touch Judah's palate and close it! At this moment I cannot think about him (or me) going through that surgery & recovery again. God can do it. Please, God, do it.

Big day for the little lion tomorrow. His PT is bringing over the stander. It's half the size of my kitchen table, so I've gotta get creative about where to keep this thing. Pretty soon we're gonna be like one of those "Extreme Makeover: Home Edition" families who live in a little, old house, have all kinds of kids, and cram everything into a multi-purpose play/living/therapy room. Ha! Anyway, I'm planning on getting video of Judah's "maiden voyage" for all to enjoy...for better or worse;)

Thanks for praying.

God. Is. Good.

Judah

This picture was taken by the mom I met at Evie's party on Sunday. She blessed me by putting it in her blog and sharing Judah with her "network". I thought the picture was so "classic Judah" that I couldn't help but share it with all of you! Besides, it's been awhile since I included one, and I know how all you Grandmas out there love to see those round cheeks that you imagine pinching and kissing! Thanks so much for the pic, Staci! You're quite the photographer:)

Baby Landon

I have a friend from Bible school who has a good friend from Oregon who just adopted a baby boy. His name is Landon and he is a little over a week old. Within the first week of his precious little life he ended up in the NICU with meningitis. He's been in for 5 days, Coded twice, and everyday that he lives is a miracle.

I have never met this family, but my heart aches for them, knowing that they watch their tiny son suffer. They know and love the Lord, and have given Landon over to Him, trusting Him completely and praising Him for each day they have with Landon; but their hearts are broken. Would you just take a minute to pray for Landon? If you're interested in further details, here's their blog: www.jamesandamberwarkentin.blogspot.com.

Thanks for your prayers and love extended to this family. Again, I'm overwhelmed at the Body of Christ! The privilege we have to lift one another up, carry each other's burdens, and show love in such powerful ways. Not to mention the opportunity we have to watch our awesome God, our Great Physician, work and move!

Sunday, September 19, 2010

The People Want to Know!

I love meeting people who know and love Judah! I have no idea who they are beforehand, but they know Judah through this blog, and they adore him! What an encouragement and blessing to my heart:) I met such a person today at dear little Evie's 1st birthday party (way to go, Evie!!). This woman has a special little boy not much older than Judah, and we have developed a "blog friendship". We were getting ready to leave, and all of a sudden I hear these familiar words, "Is this Judah?!" We ended up having a great conversation! I thoroughly enjoyed watching her hold Judah and oh and ah over him; sharing stories and experiences; and walking away feeling refreshed and lifted up. Thanks, friend!!

Anyway, this new friend gently admonished me for not updating in awhile;) so I thought I'd better get to it.

Judah's been doing really well in the day-to-day. He just got over a little head cold, which we handled just fine from home, thank you very much. Now he's just all snotty from a new tooth he's cutting:) He's doing great with his feeds! I'm having so much fun introducing him to a variety of fruits and vegetables...and chicken, which did not go over well. So far, the favorites are pumpkins w/ pears, apple w/ mango, carrots, and green beans. He's so adorable when he uses his sippy! It's almost as big as his head:) Judah has entered a new therapy phase. It's called "I Don't Like This, So Leave Me Alone!". It's actually pretty comical because acting so not laid back is very unlike him. The encouraging thing about it is what this behavior says about his cognitive abilities. He recognizes his therapy ladies, he communicates very clearly when he doesn't like something, and he anticipates things. Go Judah! I'm hoping that we can just get creative about his therapy so that we can work around his new "preferences" and have some good play time with his ladies. He gets his new stander this week, so I'm really hoping that he does ok with that. He NEEDS to be on his feet...we'll see how that goes;) Judah has only 2 doctor appts. this week. A follow-up with GI and another one with Plastics. I'm concerned about the Plastics one, because Judah's gap in his palate still hasn't closed. I fear that he's going to say "revision surgery" sometime on Tuesday...and I'm pretty sure I'm not ready to hear those words. Not to mention the fact, that when I think about it I feel angry, and I really don't want to blow my testimony in the doctor's office! Along with these things Judah is his normal, wonderful, jolly self. He's so easy to please, and laughs at the slightest provocation! He has come so, so far; made so much progress and accomplished so many things! I need to keep this in mind...

...because I've come around to the "Why" and "He's so far behind" part of the cycle again. I've been to the zoo and the children's museum within the last couple weeks, and had that punched-in-the-gut feeling all over again. I think that will probably never fully go away, but I sure do get frustrated with myself sometimes for feeling that way. And I just hate it when the "whys" creep in unexpectedly. It's still so surreal when I come face-to-face with the reality that I have a "special needs" child. I normally don't think of Judah that way...but... I was ready to scream at the next mother who said to her toddler that couldn't have been older than Judah "Aw, look at the baby", in reference to Judah while we were at the museum. Ya, they don't know, I get that. Still. This is part of the journey. A sucky part, but a part nonetheless.

Now that I think about it, these feelings of anger and frustration, and all the other ones that are a part of my day and aren't always so happy ones are another aspect of this journey that needs to be handed over to the Lord. I think it's ok to feel these things. I think it's ok to feel. I know God can handle my emotions. And if struggling with these feelings keeps me running back to Him, then...that's good. As long as I keep running. To Him.

So, there's your update friends and fans of Judah. Prayer warriors. Grandmas (of whom there are many) and Grandpas. Family. This is so wonderful and so hard - a beautiful agony at times. I can't fathom taking a step on this journey without the One who holds my children, my heart, and our future in His hands; the one who holds my hand and walks with me; and the ones who uphold us in prayer.

Sunday, September 5, 2010

I stand corrected.

When will I ever learn? I need to just trust the Lord with my feelings, my anxiety, my apprehension, and leave it there. It is true that I will never get over some things, not this side of Heaven anyway; however, I realize that in my post about the party I didn't extend any grace to anyone that we were going to be seeing...whether I knew them or not. I'm sorry for that. I get so nervous - defensive even - about who I don't know, that I forget about the individuals that I do know. The ones that genuinely care about us and love us. The "grandmas" that welcome us with open arms and hearts, just itching to hold Judah in those arms and close to those hearts. The others that accept Judah for who he is, and treat him and us with kindness and warmth. The hardest part about yesterday was when a mom brought over her little girl (who looked younger than 15 mo.) to see "the baby". We get that all the time. I can handle that. [Actually, if it's someone we know who has a baby younger than Judah, but bigger, I joke that Judah's still older so they'd better show some respect!] Anyway, the party was fun and we all had a good time. I'm hoping that maybe this time around I learned my lesson about jumping to conclusions and making snap judgments about people I don't even know. I've been burned in the past, but I shouldn't allow the few to affect my expectations of the many. I am humbled this morning.

What a great way to go to church...

Saturday, September 4, 2010

Here we go again...

We're going to a birthday party today for a little girl who just turned turned one. I'm always a little (read: a lot) apprehensive about things like this. For several reasons. Judah is 15 months old today, and is wearing size 3-6 clothes...and the pants are still too long. He is officially a whole year behind in his growth. He has several delays. Not everyone there will know us, or him, or "our story". People can be tactless, insensitive, and lack grace. I just never know what to expect. And it's always like a punch in the gut to get "up close & personal" to one of Judah's peers. Part of me is frustrated with myself. Shouldn't I be over this...or at least be used to this by now? Shouldn't it just not matter? Or at least not be important enough to waste blog space on it?
So, here we go again...

Judah is who he is, and I wouldn't change him for anything. I don't make apologies or excuses for him, but brag about him and show him off. He endears people to himself simply by being the adorable, charming little darling that he is. There's nothing wrong with him! He's exactly who he was created to be, and he is a remarkable reflection of God's grace, love, and goodness.

I think there are just some things that you never really get over. And regardless of what someone else might have to say about that, this is our experience, our child, completely unique to us, and we can grieve and process and grow at the pace God sets for us. For me. Just like the pace that God has set for Judah's little mind and body to grow and develop.

I really need to go love on that little boy. He is good medicine for me.

Friday, September 3, 2010

Progress!

I am so encouraged and excited and proud of Judah! He's been doing great since his diglut! On Wednesday we spent an hour with his speech therapist at Children's (in the new Specialty Pediatric Center - N.I.C.E.) and talked about how to approach feeding and drinking. He took several bites of pureed pear, a couple little puffs, and even "explored" and "tried" the sippy. (I had even gotten him to take several bites of baby food the night before & the morning of this appt.) Since Wednesday I have started a new routine with Judah. Before he gets fed through the button I offer baby food, puffs, and thickened water. He's been doing so well! It will be a long, slow process to reach the goal of a normal diet and removal of the button, but I'm very encouraged by Judah's start. I'm confident that with time Judah really will stop aspirating, and someday we'll look back at this time in his life and say "Remember when...".

I'll have to post a video soon. He's just too cute when he's trying these new things...sitting in the booster seat that he barely fits in! Methinks a highchair might be in order. Something more supportive and comfortable for him.

On a side note... We had a lapse in Judah's Growth Hormone Replacement Therapy (GHRT) and he didn't get an injection for a week. He went 6 days without vomiting, a record since the end of June. I was anxious about starting up again, because even though his vomiting improved after we switched drugs, he was still vomiting every 2-3 days (at least) for an unknown reason. I was still thinking that there had to be a connection. We've started the GHRT again, and 3 injections later he still hasn't vomited. I'm wondering if the little bit of food he's eating is enough to make a difference here. The time he started solids coincides with the time he's been back on the Norditropin. Hmmm... Can't wait to talk about this with Dr. D. in October. My notebook already has several questions in it.

Tuesday, August 31, 2010

The diglut. did not go well, and Judah is still aspirating thin & nectar consistency liquids. Bad news. I was wrong, and Judah can still move to a sippy (of sorts) and start taking steps forward. Good news. Judah did great with baby food during the diglut. - a first - and, overall, I'm encouraged. Also good news.

That's the long and short of it. I didn't realize that I was limiting Judah. I thought that he was stuck on a bottle as long as he was aspirating. I'm so glad I was wrong about that! This is where my love for therapist's innovation and creativity come in. Tomorrow he's going to start learning how to drink through a straw! He'll use a honey bear. That's right, the cute little honey bear that sits on your grocer's shelf. Put a little plastic straw in the tip, and you have a great tool to teach a kid like Judah how to drink! No more bottles! We have steps in place now to move forward. It's going to be a long, slow process, and will take more patience than I have today, but we'll get there. And we might even meet our 12 mo. goal!

So, like I said, it didn't go well, and I was disappointed; but Judah's speech therapist at Children's is great and she encouraged me. She's confident that getting him past his "oral aversion" and just giving him time is what he needs to move past the aspiration. We will get there...eventually.

Diglutition & Feeding Evaluation

Fancy words for a test that will determine if Judah is still aspirating, and an evaluation to see how he's doing in the eating department. I'm really nervous about this. I don't know how Judah will do this morning (the diglut. is at 10:00), and so much is riding on this. Most of the oral goals we set for Judah in his IFSP review are based on the assumption that the palate repair would fix the aspiration problem. If he's no longer aspirating then we can go back to normal liquids. Thickening his liquids is what landed us in the NG situation, which turned into a G Button, in the first place. Normal liquids is HUGE! Then we can start moving forward in weaning him off the button, learning to use a sippy cup, getting off formula, and progressing towards our goal of being on a normal diet! This is a 12 mo. goal, but we can't move anywhere if he's still aspirating! Help, Lord!

Thanks for praying. I'll keep you posted...

Monday, August 30, 2010

We made it!

It's been 3 weeks since Judah's palate repair, and I can't believe how quickly the time flew! We've been really busy, which helped, and we had a weird week last week with Ezra being sick and then Eli missing 4 days of school because of the same virus. But all of a sudden we're here, and I took Judah in for his 3 week follow-up! The repair looks good. There's a small gap in the palate, not all that uncommon, which will probably close on its own. I've watched the gap over the last couple of weeks, wondering about it, and it has gotten smaller. It's more like a crack now. The PA said sometimes they have to do "revision surgery", but right away I said I wasn't ready to go down that road...so that was the end of that. Overall the news was good and disappointing. We got to take his restraints off right away, and Judah is lovin' that! He's been going nuts with his hands in his mouth & slobbering on anything else he can get up there. Apparently though, it's customary to keep the "no nippling" rule in place for 6 weeks. Well, that was news to me. So, based on my own research, I have decided to toss that "custom" out the window. CL/CP repair & recovery is pretty controversial, but there's enough information out there that I'm totally confident with my decision to give Judah his pacifier back. And start bottle feeding (or try) again. Funny thing, though... I wrapped up Judah's brand new pacifier in a box, got the video camera, and was all ready to capture this sweet reunion on tape. The child doesn't know what to do with the thing. He hasn't had it - or anything else for that matter - in his mouth for 3 weeks, and he's at a total loss! He plays with it and explores it with his hands, but he doesn't have a clue about what to do with it in his mouth. Tonight he fussed & cried himself to sleep in the sling, fighting the pacifier. Gr.

He's got his swallow study tomorrow morning. I'm even more nervous now. What is he going to do with a bottle?! So much hinges on this study. I'll be sooo disappointed if it goes badly. He's got a feeding eval. right after that. Ugh. I just have no idea what tomorrow morning will look like for him. For months I've begged God that Judah will show no signs of aspirating when we finally get to do the swallow study...but he has to take a bottle...and swallow something...and he won't even take the pacifier.

Oh my sweet boy... Don't you know that if you won't take anything in your mouth, we'll never get rid of that button?

OK, so it's only the 1st day... It's really not what I expected, though, and I'm sad about that.

The Man I Married

Jared is extraordinary. I have always believed him to be out of my league. Seriously. He loves me better, more thoroughly, more creatively, more selflessly than I have ever loved him. Not to mention how hot he is! Red hair! I've always kinda wondered how I actually landed him. I mean, really, how did I get lucky enough to snag Jared Stewart?!

He has written me a letter every week (with only a couple misses) for the last several months. I can't remember when it started, because I didn't know he was going to keep it up. But...I'm thinking it's been at least 4 months. Quite possibly longer. Letters about how much he loves me. What he loves about me. Why he loves me. What he looks forward to in our future. Memories from when we were growing up or first starting out. I'm not kidding. He really does this.

He has made breakfast every Saturday morning - a good breakfast - since we've been married. That's 10 years. And he does all the clean up!

He leaves notes for himself around his office desk asking, "What the heck have you done for your wife today?" & something about how can he serve his family today? Really.

The man woos me. He does little things for me. A lot. He buys me little gifts. He surprises me with my favorite cold coffee drink. He does stuff around the house...without being asked.

The man is...extraordinary.

So, last Friday we were supposed to have our weekly "weekend date in". It was Jared's turn. He got a movie I wanted to see and bought the stuff to make my new favorite dessert. And then, for some reason unbeknownst to me, my stomach decided to be stupid. I had discomfort bad enough to keep me curled up in a ball for the whole movie. Blah. Poor Jared. And of course he was so nice and wonderful about the whole thing. On Saturday morning I got out of bed & went to the kitchen to make the coffee...which Jared had gotten all ready for me the night before. All I had to do was pour the water from the coffee pot into the maker & turn it on. Nice. I opened the cupboard to get out a mug & met a post-it note. Throughout the morning I found several more.

In the coffee cupboard: ...thanks for not making me face my coffee addiction alone... :)
On my phone: You're my favorite person to talk to. Ever.
On the bathroom window: You're so cute when you smile in the morning:)
[I'm sooo not, but that's love for ya.]
On the bathroom mirror: You're my best friend. I like you.
In my glasses case: I can't believe how blessed I am to be married to you!
On my blow dryer: "You are so beautiful......to me..." [A song on "our" cd]
In my underwear drawer: [Some things are better left unsaid;)]
On my jewelry box: Here's what I like about you: you.
In my jewelry box: You take good care of me. Thanks.

So, move over Casanova! You've got nothin' on my redhead!

Tuesday, August 24, 2010

6 days & counting...

That's right, I am literally counting the days until we can burn these restraints! Actually, his OT & PT have requested that I NOT burn them so that they can use them on Judah's legs to "encourage" (and when I say "encourage" I mean "force") him to bear weight on his legs. Anyway, we're almost there! And, really, Judah is handling them way better than I am;)

We saw the pediatric surgeon this morning (boy do I like him) and when he looked at Judah's G Button site he said, "Wow, that looks fantastic!". Apparently, Judah's site is healing exceptionally well, & looks great, which is not all that common. Well Praise the Lord! It seems like Judah always has something going on, some complication - something - so any news like that is a big encouragement to me:) The rest of the appointment went well, and overall we got a good report.

I'm also excited, because over the weekend Judah turned that final corner to being back to his normal, unreasonably happy, giggly self! It has been so much fun to see him laughing so easily again, and I love hearing his new sound:)

Yesterday I had the privilege of participating in the regional planning meeting for Judah's IFSP (therapy) program. His teacher asked me to be a parent representative on the regional planning team. We meet just about every month, and I get reimbursed for attending - nice! There are representatives from the school district, Head Start, Health & Human services, the pre-school IEP program, and even our children's librarian. I was a little intimidated and felt totally out of my league. Not to mention the fact that I felt beyond comfortable in this new situation where I knew only 2 people. It went really well, though. The main purpose of this team, in the broadest sense, is to improve and refine their services to help the "special" child & his family, and to help as many as possible. It's a very good thing. They ask for parents to be on the team so that they have real people going through this stuff to offer their perspective and "expertise". They asked me to be on the team because of my "experience with almost every medical field", and the positive relationships I've built with so many different doctors. Not experience or relationships I asked for, but definitely both that God is using for His good. This is another opportunity to rub shoulders with others who don't know Him, but at the same time be a part of affecting change for differently-abled kids & their families. How cool is that?

And here's something new and totally unexpected. The Lord has dropped an opportunity in my lap to be a part of a new business venture of sorts. My good friend and I are going to be making slings for some doulas in town. They'll be buying them from us, and selling them to their clients; and we'll also be trying to sell them to others. It's a great connection, and I really believe that this is from God's hand. I have no idea what this will turn into, but I'm committed to doing whatever I can to glorify God through this, and allow Him to use me and this opportunity for His glory. I'll put more details down later...after our first official "business meeting" on Thursday:) We've gotta come up with a name & website, and figure out some other details as well. I'm excited!

One more thing. I've been seeing more and more lately (I think because, for some reason, God is allowing me to see) how I've grown in the last year...and even just in the last several months. I feel like I've grown by leaps and bounds more recently, though I'm not sure exactly why. It seems like more often than not we (or maybe just I) don't have the privilege of seeing growth, but just keep striving for results that we only wish we could see. Anyway, I just wanted to confess publicly that the changes I see in myself are not my doing, and are in no way because of anything that I have brought about. Any good that I can see in myself is only because of Christ in me, and HIS faithfulness to work in and refine me. I have noticed a shift in my attitude towards certain things, a stronger desire for Him to work in me, an urgency to see His grace & goodness & glory made known to others, and a desire for a deeper love and respect for my husband. There's no way in heck-fire that a single iota of any of these things could come from myself. I recognize that, God, and I place the glory and honor and thanks for these things at Your feet. Thank You for not giving up on me. For not abandoning me. For being faithful to make me more like Your Son. For extending grace and gentle discipline to me as I fail. And then for extending that grace to me so I can get back up and try again. God, You are so amazing! Thank You for giving me a deeper desire for YOU! And thank You for the gift of my family - Jared, Elijah, Ezra, Lydia, Judah - who are a constant reminder to me of Your love and goodness.

Wow, I feel like I just had a little bit of church there! Sweet.

Friday, August 20, 2010

We've made it through another week. Not quite another 7 days, but a very busy 5 days that included a back-to-school picnic; 3 doctor appointments; an IFSP review; a 1st, 2nd, & 3rd day of school; a student leader dinner; and a visit from Grandma & Grandpa...who don't leave until Monday, thank the Lord! This week has been harder than I thought it would. Judah's recovery has been more complicated than I expected. Pain medication that causes constipation, air from the laproscopic surgery, low muscle tone, & being nonweight-bearing lead to an uncomfortable, unhappy baby...and ultimately to an unpleasant encounter with Mommy's finger in a very sensitive area. Enough said.

On a happier note... Judah had his first belly laugh post op! He sounds so different to me, but what a beautiful sound! So glad he saved those first laughs for me:)



video

Judah also loves this new toy, and I'm so proud of how well he's doing with it! It's been awhile since I posted any videos at all, so I really thought it was absolutely necessary to include this one, too!



video

One more thing. For months I've been working on getting Judah to lift his arms up to me to be picked up. Tonight when he was in his chair I went to him and started the, "Do you want Mommy? Do you wanna come up?" routine. And he did it! He raised those little restrained arms up to me with the biggest grin on his face! Oh, I'm so happy:)

Monday, August 16, 2010

One week down...

...two more to go. This week has gone by quickly. I'm counting on the fact that the next 2 will go by just as quickly, and all of a sudden we'll be removing those restraints for good! Every day I see improvement in Judah, and I thank Jesus! This morning was the first one post-op that he woke up smiling, and he hasn't had any Tylenol today! Thank you so much to each of you who has prayed specifically for his pain. He's a different baby from the one I cried over and with last Monday. He still occasionally makes his little sad "owie" face, and every once in awhile shakes his head, but he is sooo much better! I think what bothers him the most now is when he tries to clear his throat, or he gets a bunch of spit in the back of his mouth that he has to swallow. He fusses or cries out a little bit when either of those 2 things happens, and I'm guessing that it's because the roof of his mouth is still exposed and so tender. Still, considering that he has uncovered bone in his mouth, his healing is pretty remarkable. Praise the Lord!

I've also been saying thanks to the Lord over the last few days, because Judah isn't refluxing. He's vomited a few times, and I had to slow him back down again, because his tummy didn't like it when I tried to shorten his feeding time; however, he's not spitting up or anything. I was so sure that he'd have terrible reflux, especially since the surgeon said reflux was so common & a probability for him. I was anxious about it. But all I can do is shake my head and praise the Lord for another answered prayer! Seriously, this is huuuge to me!

Every time a child goes under anesthesia at Children's they come out of Recovery with one of these sweet, soft, cuddly bears. Judah has his own little colony. He has one from surgery last December, and one for every month since May. Sheesh. I suppose someday in the not too distant future we'll pass them on, but I'm just not quite ready to let any go yet.

Thursday, August 12, 2010

From the First Floor...

...of my house! I'm sitting here in the living room enjoying the sounds of my kids playing, breathing another sigh of relief that we're home! The kids have been so happy to have Judah and me home. Lydia held Judah's hand all the way home from the hospital, and the boys have been trying to see who can make Judah smile the most and laugh first. Daddy got the very first giggles, though, on our way out of the hospital last night!

The hated gauze pack finally came out around 6 P.M. I couldn't believe how loud Judah was when he cried once it was out! He sounds just a little different to me now that he has a palate. Thankfully we had a great nurse last night who did everything she could to get us outta there quickly, and we were on the road by 7!

Judah slept well all night, and didn't need any Tylenol until 4:30 this morning. He's been trying to roll around on the floor today, but those restraints really make it difficult. Boo. We took a walk to the library today and got ooohed and aaahed over by our favorite librarian, and Judah is now taking a nice, looong nap! He's had a pretty good day overall. He threw up his breakfast, so I think I need to take the feeds a little slower for a little longer. His lunch went really well. I already love the G button! What a difference it makes! I love seeing Judah's beautiful face just by itself, and I love that there's no tube hanging from him anywhere!

I got all of his follow-up appointments made this morning, so between those and getting ready for the boys to start school on Wednesday, the next couple weeks are going to be B-U-S-Y!

I'm so thankful for every day that we get through, because it's another day farther out from surgery, and one day closer to recovery...and working to meet our new feeding goals!