He Got Skill

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

GI Appointment

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

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

The "Ugly" One

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

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

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

GOD. IS. GOOD.

Judah's Stander

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

Little Marshmallow Sweetie post-stander!

A New Favorite

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

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

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

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

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

Baby Landon...

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

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

Oh crap.

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

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

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

Thanks for praying.

God. Is. Good.

Judah

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

Baby Landon

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

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

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

The People Want to Know!

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

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

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

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

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

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

I stand corrected.

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

What a great way to go to church...

Here we go again...

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

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

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

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

Progress!

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

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

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