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...

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!

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.

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:)

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!

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:)

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.

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!

We're Going Home!!

I only have a minute to say "WE'RE GOING HOME!!!" The pack is GONE, the feeds went WELL, and we're packin' it up! Can I get a Hallelujah?!

More to come from the home front...

From the Fourth Floor VII

I'm getting a little tired of that title. I may have to change things up a bit regardless of where we are for my next post. Anyway...

Today has been a good day for Judah. Me too. As the day progresses he gets more active and playful. I've seen several smiles today, too! He still makes his sad "owie" face, but his pain has decreased & is under control, and he doesn't shake his head anymore! This morning we had another visit from our favorite endocrinologist! I can't say enough how blessed and thankful I feel that the dr. we see the most (besides the pediatrician) is one that I genuinely like, have developed such a good rapport with, and I respect & trust so much! Thank You again, Lord! We had a good conversation about a couple different issues this morning. He gave me a huuuge compliment when he asked for my input about Judah's stress dosing! Seriously. WOW. I was encouraged after he left and felt so blessed. Not too long after that a home health nurse delivered Judah's feeding bags and handed me an envelope that she had been asked to deliver. Inside was a voucher from a good friend for the cafeteria here. That may seem like small potatoes to some, but to me practical, thoughtful, heartfelt gifts like that are some of the best! Thank you again, Lindsey & Evie:) I enjoyed lunch thoroughly, especially my chocolate cake:) The rest of today has been pretty uneventful. Lots of waiting. Judah took a 2 1/2 hr. nap this afternoon, and then woke up and pooped like a champ. I know that's kinda gross, but I have learned to celebrate the little, albeit gross, things in life! I've had fun playing with him in my lap and taking him on a walk around the floor in a wagon. True to form, even in his sad, "owie" state, Judah has charmed and delighted the nurses around here, and he got lots of "hellos" and "aaaws" on our walk:) Judah also had his first feed at 12. It was only 50ml, but he handled that great, so we're on to the 100ml feed at 4. I'm praying that the dr. will let me take him home after that if he tolerates it. Because of my experience with Judah, he might let me take him home before his first full feed...but he might not. God will decide & I will trust. The biggest frustration of today is not hearing anything from the plastic surgeon. The nurse couldn't find him, so I finally called his office myself. A nurse got back to me just before 3 and let me know that he's in clinic and surgery in Norfolk today. His partner will be rounding for him after he gets out of surgery at Creighton. Ummm...that would've been nice information to have yesterday. Gr. I respectfully let the nurse know that I was frustrated and thanked her for letting me know. Hopefully the wait won't be much longer.

I thought some pics from today would be fun. That smile is his 3rd post-op:)