Tuesday, August 31, 2010
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.
Thanks for praying. I'll keep you posted...
Monday, August 30, 2010
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.
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
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:)
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:)
Monday, August 16, 2010
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
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!
Wednesday, August 11, 2010
Grace: Right Here, Right NowAugust 11, 2010 By: Paul Tripp Category: Commentary
Do you understand the majesty and practicality of the grace you have been given? If you don't, in subtle and not so subtle ways, you are looking to other things to get you through. You don't need to go out searching for hope and help, because they are already yours in the resources of grace that you have been given as God's child.
Grace is the most transformational word in the Bible. The entire content of the Bible is a narrative of God's grace, a story of undeserved redemption. By the transformational power of his grace, God unilaterally reaches his hands into the muck of this fallen world, through the presence of his Son, and radically transforms his children from what we are (sinners) into what we are becoming by his power (Christ-like). The famous Newton hymn uses the best word possible, maybe the only word big enough, for that grace—amazing.
So grace is a story and grace is a gift. It is God's character and it is your only hope. Grace is a transforming tool and a state of relationship. Grace is a beautiful theology and a wonderful invitation. Grace is a life-long experience and a life-changing calling. Grace will turn your life upside down while giving you a rest you have never known. Grace will require you to face your unworthiness without ever making you feel unloved.
Grace will make you finally acknowledge that you cannot earn God's favor, and it will once and for all remove your fear of not measuring up to his standards. Grace will humble you with the fact that you are much less than you thought you were, even as it assures you that you can be far more than you had ever imagined. You can be sure that grace will put you in your place without ever putting you down.
Grace will enable you to face shocking truths about yourself that you have hesitated to consider, while freeing you from being self-consciously introspective. Grace will confront you with profound weaknesses, and at the same time bless you with new-found strength. Grace will tell you again and again what you aren't, while welcoming you again and again to what you can now be. Grace will make you as uncomfortable as you have ever been, while offering you a more lasting comfort than you have never before known .
Grace will work to drive you to the end of yourself, while it invites you to fresh starts and new beginnings. Grace will dash your ill-founded hopes, but never walk away and leave you hopeless. Grace will decimate your little kingdom of one as it introduces you to a much, much better King. Grace will expose to you the extent of your blindness as it gives you eyes to see what you so desperately need to see. Grace will make you sadder than you have ever been, while it gives you greater cause for celebration than you have ever known.
Grace enters your life in a moment and will occupy you for eternity. You simply cannot live a productive life in this broken-down world unless you have a practical grasp of the grace you have been given.
Are you living out of this amazing grace? Does it shape the way you respond to your personal struggles, your relationships, and your work? Does your trust in this grace form how you live with your husband or wife? Does it propel the way you parent your children? Does it give you comfort when friends have disappointed you? Does it give you rest when life is unpredictable and hard? Does it make you bold and give you courage in places where you would have once been timid? Does it make the idols that tempt you less attractive and less powerful? Do you wake up and say, "I don't know what I will face today, but this I do know: I have been given amazing grace to face it right here, right now."
May God help you to understand and rest in the grace that you have been given!
"The LORD'S lovingkindnesses indeed never cease, For His compassions never fail. They are new every morning; Great is Your faithfulness. "The LORD is my portion," says my soul, "Therefore I have hope in Him."
I know this verse gets used a lot, but seriously, isn't it obvious why? This short passage is overflowing with life-giving promises, hope, comfort, strength! I looove this passage! And while I don't necessarily have a specific list of all these "new mercies" or "compassions" as the NAS says for this morning, I do have a tangible sense of God's grace being extended to me this morning. I am encouraged this morning and feel refreshed. I have a renewed confidence in God's goodness and love towards us, even if that means that Judah will need to stay an extra day. That's not to say that I won't be disappointed if that happens, but I do feel better equipped to handle that situation today should it arise.
I had 2 pick-me-ups last night just when I needed them. They're totally not in the same league as each other, but they both did my heart good. I was able to get my hands on some chocolate milk - anybody else find chocolate milk to be completely therapeutic?? - and I got a little smile out of Judah last night! Just one, but what a beautiful little smile it was! Judah had a great night, sleeping soundly until just after 5 this morning. I crawled into bed with him at that point, and we both slept until almost 7. Huge answer to prayer! This morning Judah is going down for an abdominal x-ray just to be thorough. His blood work came back normal. He's also getting that awful gauze pack off sometime this morning! Get this, the care partner (like a nursing assistant) just came in to take him off the monitors - yay - and he smiled at her:) So, we've got a good start to the day!
Please pray for my other sweet kiddos today. They're missing Mommy & Judah. They get to play with Miss Mary & her boys at our house this morning while Daddy goes to the office for awhile, so I'm hoping they have a good time and are good! Thanks so much, Mary! You're friendship is such a blessing to us:)
Tuesday, August 10, 2010
I did get a nap in with Judah today. While these over-sized cribs might be adequately comfortable for babies and small children, they were not designed for Mama's and their child-bearing hips! I was tired enough for said hips not to notice until I woke up;)
I am so encouraged this afternoon! Judah has turned a corner and made some definite progress! He's still staying comfortable on the Tylenol with codeine alone. No more fever. No smiles yet, but he's started rolling back and forth just a little bit in his bed (I can't imagine how old it gets for him to be on his back!) and reaching for the fishy mobile that's on the side of his crib. Music has been a huge part of helping him relax and stay distracted. He woke up when Daddy brought lunch (thank you, thank you Larissa!!!) and reached out for Daddy's beard:) He's sleeping peacefully again. Oh ya, and he had a poopy diaper! Wahoo!! (It really is the little things folks.) I'm sitting beside him in his crib again, enjoying the quiet and the sound of his raspy little breathing. What a treasure he is. The ped. surgeon will be by later this afternoon to take a look at his tummy again. My hope is that he will see enough improvement to order Judah's feeds again (he hasn't eaten since 8 last night) and give me good news about tomorrow.
More thanks from us this morning:
*Judah had a good night last night. We both got some good stretches of sleep, and he was very comfortable for most of the night.
*His fever was gone all night long, and he was able to go the entire night without any morphine.
*The pediatric surgeon came by at 11:30 last night to check on him and made a couple changes in his g button care that allowed Judah to be more comfortable.
*For a thoughtful, sensitive husband who not only gave me the change from our change cup so I could get coffee & a muffin, but also sent along a little pick-me-up with my best friend last night!
*We're on the East side of Children's & the sun is shining brightly into our room:)
*God reminded me last night that His faithfulness is great, beyond my understanding, and His mercies are new every morning. I was able to go to sleep with that promise in the forefront of my mind for this morning.
Prayers from us:
*Pain management and decreased pain for Judah.
*Judah's stomach is still distended and has too much air in it. Today I'm going to pray out the poop! His feeds have had to be delayed because of the gas in his belly, and that delay could potentially cause his home-going to be delayed.
*Rest for both of us today; but I'm really more concerned about Judah's rest. I want so badly for him to be comfortable and peaceful!
*Judah's gauze pack won't come out until sometime tomorrow morning. So, prayer for comfort in that area, and that he won't have such a hard time with it today, like he did yesterday. And I have a pretty bad attitude about it. I'm frustrated and disappointed. I need to remember that God is ultimately caring for Judah, and that gauze pack is what is best for him right now. I'm mad at him, but I do still really like our plastic surgeon.
*For Jared & the kids while they're at home and we're apart. I love talking to them when they're on their own! It's so fun to hear about what the kids are doing, what Daddy fixed for lunch or supper, what they played during the day, and how Lydia got her hair done! I miss them, though.
This stay is not exactly going according to plan. I'm not sure where I got the idea that it would. I mean, we're talking about Judah here - wonderfully complicated little Judah. --OK, so right here I was going to say, "It's hard not to be discouraged or disappointed", but Dr. D., Judah's endocrinologist that I LOVE came in! What a relief and encouragement to see him! He's familiar and I trust him and I know him and I just like him. He came to check on Judah and make some recommendations for Judah's stress hormone medication. Very important stuff when you're sick & in pain and your body doesn't produce the stress mechanism you need to physically deal with it. Anyway, that was a gift - thank You, Lord. Then, as we were talking, Judah woke up. I went over to him and for the first time he lifted his little elbow-restrained arms up to me. He let me kiss his little hand. I'm sitting on his bed next to him while he lies awake, looking around and up at me. Another gift. This experience, these circumstances, are difficult; but I have just been reminded again that God is intimately involved in the details. He loves us so thoroughly and delights in us, hand-delivering these little "gifts" along the way. He is the One that makes this journey possible and passable. And when we feel like we can't take another step, He picks us up and carries us. He's so personal and so good.
To GOD be the Glory!
Monday, August 9, 2010
By the way, the surgeon also gave us some pretty cool pictures of Judah's stomach and the hernias:) Modern technology meets modern medicine makes Mom smile!