Friday, December 17, 2010
Friday, December 10, 2010
Wednesday, December 8, 2010
Tuesday, November 23, 2010
Saturday, November 20, 2010
Wednesday, November 3, 2010
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
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
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
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
Thursday, October 14, 2010
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:)
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
* 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
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
"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
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
Saturday, September 25, 2010
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
Thursday, September 23, 2010
[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
Please pray for his parents, James & Amber. Thanks.
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.
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
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
What a great way to go to church...
Saturday, September 4, 2010
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
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
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!