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*...