Still a spoiled brat...

Since I know you'd all be upset if I didn't start a post with a pic of this little man.....

Here is Shep taking a brisk, refreshing walk. We try really hard to get him outside since he stays at home so much. If I haven't metioned how much I love wubbanub's before (the paci with a beany baby sewed on to it to hold it in baby's mouth), here's a picture of one. I got this one at the hospital but have ordered more since then online.

They are amazing.

We've been hangin out, trying to stay healthy, which was until this week accomplished. But, alas, the boys did get sick this week for the first time since Shep came home. By the grace of God, it happened to be the week my parents are in town. So instead of total chaos, trying to keep sick brothers away from their baby Shep- my parents took the boys to their house at 7am this morning and they are cozied up enjoying cable and some mimi & papa time. Thank you, Lord, for your sweet provisions. It's things like this that remind me that you are near, you care, and you know what I need.

This coming Winter has the potential to be.... a very big lesson in trusting God. With all the crazy flu stuff going on and Shep being very much at risk, we have prayed and researched as much as possible, trying to figure out how to best protect our family. At the same time, we know that whatever we choose to do or not to do, our children's lives are not in our hands. I know, this should be review right? Didn't you already get that part, Steph? 

Well, turns out I'm a pretty slow learner, actually I have what would appear to be major learning disabilities. Yeah, like Spiritual dyslexia or something. 

At least that's how it seems these days. I feel like God is trying to pound his beautiful, refreshing, freeing truths into my dense skull and I'm like... duuuuh. Just slow. 

I guess it's just one of those seasons where it's gonna take some time.  My hardened heart needs someone very patient, very understanding, very strong, very loving, with unending reserves, unmatchable affections and tenderness, perfect insight, someone who knows me better than I know myself, someone who can change me. 

There is only one person I know like this. And by His mercy, I know Him. If you haven't caught on yet, let me tell you, I am talking about my Saviour. And though I love my Noah, I don't mean him. There is no human being on earth who can truly handle the things that this life sometimes, inevitably, brings our way. Most of all, there is no one who can handle us. I mean the us that falls apart, the us no one sees, or the us that the ones we love the most see in the hard times. 

The us that we try hide from ourself and others. Sometimes we just think of someone worse than ourselves. That approach isn't too hard. There is always someone worse than you right. You don' t have to think long to feel good about yourself and forget the broken parts. There's always Hitler.

Don't worry folks, I'm not going crazy. I'll leave that to Hitler.

I'm just a messed up fool, spoiled brat, who is sooo grateful for a Saviour. A lady who is so glad for my Abba Father, a Daddy, who is not deterred by the many temper tantrums I throw. And there are plenty. Trust me.

It actually reminds me a lot of my dad.

 I was a sassy little thing, growing up. And I never have much cared for not getting my way. It's SOOOO inconvenient and irritating. I swear I could be happy all the time if I could get my way all the time. But no one, including God, seems to agree.

Soooo anyway, I can remember countless times I threw embarrassing, out of control, disrespectful temper tantrums as a child. In those moments I had no regard for the parents who so tenderly and affectionately loved me, only wanting my best. Even if it meant "no." I just lost it. 

But this is not how my dad recounts my childhood.EVER. When asked about what I was like as a child he dives into an exhaustive list of the most charming,precious qualities; the sweetest of attitudes, the beautiful moments. To listen to my dad, you would have thought I was literally an angel. "My sweet Stephanie, my little Natasha, always soo sweet" (he used to call me this when I would wear a fur coat he loved to see me in. I was only 5, but he made me feel like a little russian beauty) He literally almost tears up every time.

My daddy is the most gracious person I know. And somehow I doubt that when my dad goes on and on, it's  just a bad memory. It's not that he doesn't know my weaknesses. He did raise me. It's more like when he thinks about me, his overwhelming love for me is so much greater than all my failings. In light of his true, authentic love for me, there's not a lot of room for recounting the failures. The failures are still real. But his love is even more real and far outshines it all.

I believe the God of the bible to love His people much like this. It verses like these in Hosea 11:1-4 that remind me of the character of the God I serve

The Lord's Love for Israel

11:1 When Israel was a child, I loved him,
and out of Egypt I called my son.
2 The more they were called,
the more they went away;
they kept sacrificing to the Baals
and burning offerings to idols.

3 Yet it was I who taught Ephraim to walk;
I took them up by their arms,
but they did not know that I healed them.
4 I led them with cords of kindness, 
with the bands of love,
and I became to them as one who eases the yoke on their jaws,
and I bent down to them and fed them.

And as one who still often acts like a child, boy am I glad. 

 When I'm not learning these valuable but tough lessons, this is a little bit of what life has held:

Dead cowboys

Fall 

Homemade Whipped Cream- my personal FAVORITE

Chick-fil-A in mommy and daddy's bed

and....

A couple days of restful

VACATION.

Thanks to a very generous family who showers other's with the blessings that God has showered on them, we got to enjoy our first mini vacation since having Shep. 

And the best part...

 it included Shep!

Fishing

Flying homemade kites (well, that makes them sound a little more impressive than needed)

I got them at the Dollar store and the boys got to color them. You know.. homemade like that

NOT homemade like THIS, which awaited us at the Cabin on our vacation. Did I mention how generous this precious family is?

And this kid.....

One thing is for sure

He is

not very

Happy! At all! Just flat out grouchy! Cranky! Miserable! 

But hey, we like him!

I'm thinking Christmas card, what about you?

And as a side note.. you guessed right.. Noah took me to IKEA for my birthday. Yayy!!!!!!! It was a blast!

Also, Shep has officially got his first tooth!!!! Pictures coming soon....

Mmm, that's Good.

Happy Birthday to you!

Happy Birthday to you!

Happy Birthday, Dear Mimi! 

Happy Birthday to you!

What would we do without our gorgeous Mimi?!

Thank you so much for all of your inexhaustible, extravagant love showered on our family not just throughout this journey but all my life.

You are beautiful!

So, as you all know, Shep did not de-canulate. This was much to our disappointment. But I really mean it when I say that EVERY day God encourages me about all of this. Wether while I'm out running or in church or just going about chores, God continues to speak sweet, tender, understanding things to me about about the life of my dear boy. All the while He knows that I would like to throw some form of a temper tantrum. AND if that could get his trach out, I might. But alas, these are not things I am in control of and I honestly don't want to be. 

 On a technical side, the major reason Shep didn't de-canulate was because he has a lot of granulation tissue in his airway (this is the bodies way of responding to something foreign in the body by building a kind of scar tissue there). He has enough inside to completely close off his airway. And it is above his trach, so if his trach were to get plugged, he would have no airway whatsoever. Whereas before he could still breath through his upper way, now we know there is a "block." This does make things more dangerous and his airway more vulnerable. So were looking at at least 6-8 months, probably longer, before his trach is out. Uugggghhhhh.

On a VERY EXCITING note, he went to the cardiologist this week. And the results of the ECHO were great!!!! It looks like the narrowing in his aorta is growing!!! This is exactly what we've been praying for. This has been the first month that he's put on substantial weight gain and so this was a good tester to see if that was gonna grow with him or if he was going to need a procedure soon. Also, his VSD (hole in his heart) is continuing to get smaller and they highly doubt it will need any surgery. They also took him off of baby Aspirin (for his blood clots) and the rest of his Lasiks (diuretic). SO know he's only on his Amoxicillin (which he'll be on for a couple of years) and his zantac for his reflux. Not bad for all he's got going on and still only 5 months old. 

Thursday was a great encouragement for me in light of the past week. My faith is so small, that at the slightest disappointment I began to wonder if God is for me or with me. And by His tender grace, He reminded me today that He is for Shepherd and He is at work. I am so much like the Israelites, always forgetting the parting of the Red Sea as soon as a lousy enemy shows up. So, we are just marching ahead, one day at a time with no idea of what's in store. 

Today, while at church, we sang a song and I was reminded once more of a wonderful truth.

It's all about You, Jesus And all this is for You For Your glory and your fame It's not about me As if You should do things my way You alone are God  And I surrender to your ways  Jesus, lover of my soul All consuming fire is in Your gaze Jesus, I want you to know I will follow you all my days For no one else in history is like you And history itself belongs to you Alpha and Omega, You have loved me 

And I will share eternity with You

 A difficult truth but wonderful. When I say difficult, I don't mean that I begrudgingly accept the fact that neither my own life or the ones I love are under my control. I don't mean it the way a teenager whinily says, "yeeeaahh, I know, dad...it's for my goooood," all while rolling her eyes. (I don't say that because I have any idea of what it was like to be a spoiled brat teenage girl... I'm just guessing. wink,wink.) Anyhow, I'm still a spoiled brat in many ways. But just like my earthly father never kept anything good from me, my Heavenly Father has promised to never keep anything good from me. He has only promised to protect me from what is not good for me. The only thing is that he knows what "good" really means. I only have finite things and finite experiences to drive my perspective of what is good. He has the perspective of all of eternity and his Godhood, not to mention he defines good, he created good. Good is His idea. 

Luke 11:13 If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”

And so, because I happen to believe what the bible says, I believe that throughout my entire life, God will continue to give me good gifts. And I don't mean health and wealth, obviously. Based on the verse above, I know that He has promised to give me something greater than good circumstances- He has given me His self. And there are worse things  than what can happen in this life. 

SOOoooooo, here we are. Life isn't exactly what I wish it was right now. But I'm gonna have to deal with it. And the only way to do that is talk to God about. And let Him talk to me about it and get some good reminders of what is real and true.

Not to mention, I can just be grateful that my son's alive. That's always a good one.

A precious family who once also had a trached little boy (he's know big and grown) recently bought the boys some GREAT cowboy paraphernalia. 

They've been having a blast with it. 

Because I want my son not to only love me now but also when he's sixteen.....

I will not post the VERY humorous picture of him from behind.

It was very Village People. 

He got so excited about putting on his chaps that we never got around to putting on pants. 

So from behind  it was just his tighty whities.. and chaps.

Thank you guys so much!

Our niece has been coming to help one day a week and we all love getting that time with her, not to mention she's a GREAT helper.

And him, well he's just ceeeute!

Really. Really. Cute.

When we came home from the hospital the other day, the first thing he said was, "shake out?!" (that is trach out?)

You see, he has some pronunciation difficulties that have become quite humorous. For instance the other day he introduced us to his "shitty shatt" (otherwise known as kitty kat)

Awwww.  The things baby books are made of... if you want to have to censor them.

Ohhhhhhhhhh!!!!!! And last but DEFINITELY not least.

I got the most WONDERFUL news the other day. Our friend J, whom I had told you about up at UNC, and asked you to pray for... You know the 11 year old whom had been up there for like 8 months now and the doctors couldn't find out what was wrong, remember? Well, he was so ill that he had gotten to the point that he had a "sitter" with him because someone had to sit next to his bed so he didn't slide right through the rails and out of the bed, he was so frail. He was not eating, talking, or anything. They started him on a steroid regimen and he is walking with help, writing, talking. These things were almost unthinkable for him. Unthinkable in the mind of man, but not of God.

PRAISE GOD!!!!! 

Keep praying. This is truly miraculous.

All men who happen to read the blog can stop reading here...it's just girly nonsense from here on out.

As you may have/or not noticed above, I decided to give myself bangs, then I dyed my hair, too. Can we all get a good laugh at my insanity, though? I decided one morning that I wanted to cut bangs.. then I wanted to freshen up my highlights... then I needed to wax my eyebrows, and then of course I would need to shower and do make-up to get the full affect. Me, vain? not at all!So I'm trying to do all of this, WHILE I had decided early on in the morning to work on potty training with Haddon(this means the oven timer is going off every.thirty.minutes!)

You may think I'm a good multi-tasker. Let me assure you.. I am NOT. I am just insane, and proceeded to usher the rest of my brood on into insanity also.

Not a wise move, mama.

But here's the dark hair.

It was done the next day.

And this was not taken the day mentioned above. 

I would not be smiling.

So, what have we been up to you ask? Or not.  Because you have your own life.

Well, just in case... Cause I know you REALLY care and you REALLY pray...

The most recent item of concern is that we are preparing for another trip up to UNC. Shepherd is scheduled for his bronchoschopy (where they will sedate him and take him into the OR, then put a scope with a camera up his nose and down through his airway) where they will evaluate if they think he can de-canulate (get his trach out). From what I understand they will basically take his trach out right there and see how he responds. If he seems to be holding his own then they will keep him at UNC, probably in the PICU for another few days to make sure he does ok respiratory wise before sending us home. As you can see below, Shepherd is praying (albeit with his feet) that everything goes smoothly. 

It's honestly been kind of nerve racking this week, knowing (or not knowing) what is ahead of us. But God continues to remind me that He is with us...in the OR... in the hospital....at RMH.....in the PICU. GOD. IS. WITH.US.  He beautifully reminded me again of the His nearness and his Sovereignty when I sat down with my journal from when Shepherd was born. The same verses continue to encourage me. If you remember from a while back I posted about how God gave me 2 verses the day that I was surprisingly induced with Shepherd. He knew what was ahead and made sure I had these to hold in to.

The first was Psalm 131

 O Lord, my heart is not lifted up;

my eyes are not raised too high;
I do not occupy myself with things
too great and too marvelous for me.
 But I have calmed and quieted my soul,
like a weaned child with its mother;
like a weaned child is my soul within me.

 O Israel, hope in the Lord

from this time forth and forevermore. 

The other was Isaiah 31:1,5

 Woe to those who go down to Egypt for help

and rely on horses,
who trust in chariots because they are many
and in horsemen because they are very strong,
but do not look to the Holy One of Israel
or consult the Lord!

 Like birds hovering, so the Lord of hosts
will protect Jerusalem;
he will protect and deliver it;
he will spare and rescue it.”

As we face the unknown of this week, we find great comfort in this reminder. So as scared as I am, may this day hold all that God intends, filling it with His glory and beauty. And thank you, Lord, for all that you have done thus far. So much more than we dared to imagine. Lord, help me not waste my energies with fear but to hope in you and expect great things from you, knowing you do ONLY great things. And I don't have to know all the details. I just have to know you. And because of your son Jesus, I do.

So, as we prepare for that, Shepherd continues to hang out with Daddy and the rest of the family. He's growing great and is up to 10 1/2 Lbs.  He's still not on the charts, but hey, we'll take it. 

He has become SO social. He just cracks us up. He's crazy happy and smiles like a goof ball all.. the.. time. He's a great joy and I'm so grateful to meet him anew each day. Our favorite is his laugh. He gets to giggling and you can't hear anything, you just see his chest and shoulders bouncing up and down and his face so bright. He is a gift. 

He loves to sleep with daddy. It seems were all a tad sleepy these days, but not too bad. We did get our nursing hours dropped down to 4 hours a day and 8 hours at night. It has actually turned out to be perfect. God has provided lot's of grace and he knows exactly what we need, apparently. If Shep decanulates this weekend ,we will lose all of our nursing within a couple of weeks. That will be interesting. I'm most concerned about the nights. He will still sleep with his pulse-ox on which has the delightful tendency of going off ALL. the. time. Between that and feeds, it may be slightly challenging to get a good nights sleep. 

So it sounds like an adventure in seeing God's provision. Should be fun!

He continues to make huge advancements each day, physically. His new one is playing with/eating his toes. It is crazy, I have to say, because seriously, my son is basically already a Yogi master, except were not Hindu. But, if we were, Shepherd would be a Yogi master. I have yet to capture a good picture but he literally uses his abs and pulls his feet up past his nose, folding himself completely in half. While he was still in utero, they would try to get cute 3D pics of his face for us every week, and they wouldn't be able to because his feet were covering his face. 

Crazy.

Maybe he'll give me some tips.

He's also getting so much better at holding his head up and having upper body strength. Here he is practicing with one of his favorite nurses.

And when he's not doing physical therapy or sleeping, or eating, he is playing with his bro's. I decided I didn't have room for the picture of  Haddon galloping the horse across Shepherd's head, but you know it happens.

Meanwhile, when the boys aren't riding horses across their youngest brothers head, they do things like this....

And finally, while Mimi was in town, I took the opportunity to try my hand at Once a Month cooking.

At this website, she does all of the menu planning, grocery list, instructions, EVERYTHING new every month, and it's completely free.

I'm usually not much for meal planning and all of that. It just seems to complicate my life. And there's nothing worse than a complicated life. But I must say, so far I have been loving this. You cook for one day, preferably with a friend, and you end up with 15 breakfasts, 10 lunches, and 15 dinners. Basically, you have something frozen for every other day, so you still get to cook some. But you clean a lot less throughout the week, too. With the month we had coming up I figured now was as good a time as any. Check it out and see if you like it.

I got to make great stuff like this  Garden Chowder

And Herb & potato pancakes. 

These were GREAT but next time I'm gonna make them with Sweet potatoes so they are healthier.

Lastly, my precious mommy, sent me and my sis to a spa to get a massage, pedicure, and manicure before we go back to the hospital. It was so refreshing/relaxing/rejuvinating and every other "r" word that means it was great. 

I mean, not to say I don't always go to the spa, like say every week or so. I mean of course I do. Doesn't everybody. Have I mentioned I also drive a mercedes benz? Well that's for a different post entirely.

That's a little from this side of the fence. We really appreciate your prayer throughout this weekend. I will be updating the blog on Thursday to let you know how it goes. May God be glorified.

First off, I want to let you guys know how our appointments up at UNC went this week.

Everything went GREAT!!

Besides the minor details like.... I put on all my eye makeup (and that can be a lot sometimes), then forgot mascara.  Yes, lots of eye makeup- NO mascara. This is a problem. And you'd better believe I put our nursing services to work by sending her down to the gift shop with my credit card to see what she could do. 

But, Alas, her talents with medicine could not help her to produce mascara out of thin air. And I went the whole day mascara-less.

THEN, there was something in my contact ALL day (probably all that eye shadow without the mascara- barrier holding it on the eyelid) so at the end of the day I felt like I had a scratched cornea!

Now, besides all THAT, I couldn't have asked for more.

He saw the airway folks first and they decided to bronch him in the next couple of weeks! I can't believe it!

Now, of course when they do the bronch there are any number of things they could see that would give them reason not to take his trach out but if they don't see anything to give them pause they'll go ahead and take it out. 

Then we'll stay in the hospital for a few days to make sure he can breath okay on his own.

I won't lie.

The whole idea of going back to stay in the hospital and going through a procedure with the potential for dissapointment is a little(lot) unnerving.

But I was reminded today that "When we fear God, we have nothing else to fear. But when we don't fear God we have everything to fear."

I've got to remember that whatever takes place on that day is going to be what God has fully intended for Shepherd and He alone is who writes this story... and HE CAN BE TRUSTED.

So hopefully, I'll hear from them on Monday to schedule the big day

! Please pray!

On another note, the urologist (looked at his kidneys) decided that it looks like we won't have to do anything surgically about his kidney. It appears to be functioning and as long as Shepherd doesn't get urinary tract infections while on antibiotics (which he has been on since birth and will continue to be on for the next couple of years) then he should be fine. IF he gets infections then they will have to remove one of his kidneys. But I think everyone feels good about how things look currently.

The nutritionist met with us and is still trying to figure out how to get him gaining, while nursing some,too. It's a little bumpy still at this point. He needs to be gaining about an oz. a day and at this point he is not consistently gaining at that rate. But only time and working out the kinks will tell. We have lot's of options, though. Speaking of Shepherd bulkin up, how hilarious is thhis picture of one of our friends little girl who is.... only 3... weeks... older than Shepherd. Don't you think they bring out the best in each other?

Well, that's the medical stuff.

As far as "regular" life goes, we've been busy with, oddly enough, weddings and funerals. Over the past month Noah has done two funerals and done two weddings, both of which I sang in (the weddings, not the funerals), so that has kept us both very busy.

He's out of town tonight for one of the funerals but by the merciful hand of God, I have a night nurse.

They've been having a hard time about once a week getting us a night nurse and all I have to say about that is calling it a "night" is quite deceiving. Don't people sleep at night? a little?

Between suctioning, false alarms going off, feedings , and diapers- I literally don't sleep. Please pray they find people to cover the future nights coming up. Ultimately, I don;t want to complain though. Most family's with home health are much worse off than us. And for us this is a season. For some families this is the rest of their lives. And then there are the many families who don't qualify for home health but have children MUCH sicker than Shepherd. They never get a nurse, or a break, or sleep, and may or may not have family and friends like we do.

So, no more complaining here. 

We are tired, though. And though on most levels I think we are loving life right now. There are so many subtle things that have big impacts that we haven't quite figured out yet.

I feel  like I'm in this odd place where I'm really enjoying life right now and yet my soul is not satisfied. I feel distracted and disoriented lots of the time and find it difficult to focus.  And there is only one person who requires my focus- and that's the person of Jesus Christ.

I just find it very easy to be self- relient in this season. I find myself trying to solve problems soley with the resources in front of me. I tend to think more about my weaknesses than my Father's strengths. I have very little time alone. It's very easy to be distracted. And the idea of being disciplined or getting up earlier to make sure I get to gain perspective before my day begins seems impossible...in my strength.

 You see. 

I don't want to structure the patterns of my life by what I can do, but by what God can do. 

And thought it seems impossible, I believe he can help me to do WHATEVER it takes to get time alone with Him. When it comes down to it, I just desperately miss deep intimacy with my Saviour. There is nothing else in all the world that can satisfy like His nearness. And in all the busyness and newness of life in the recent months, I've become so distracted.

Yes, I need physical rest but I need spiritual refreshment all the more. 

Of course this makes sense since we are not just physical beings but spiritual beings we need not only to be physically cared for and fed but spiritually even more.

So I'm off to bed so that I can be purposeful about my day tomorrow. So that I can do the most important things, without distraction and with purpose, I pray, with the help of my loving, mighty Father. 

I hope that all makes sense. Sometimes it doesn't even make sense to me. I'm just glad I serve the patient God that I do.

And.....

shots from the past week or 2

Haddon hangin out with a gal pal after church. 

Well, actually she stalked him, but wouldn't you with a handsome guy like that?

These are of the boys "camping like cowboys" on our back porch in the middle of summer, with flannel blankets, around a "campfire." But hey, cowboys do it.

And so do we.

For any of you feelin that it must be a manic Monday.... here's a great reminder that your work matters. 

Enjoy!!!

Let me know what you think/ the ways you struggle.

Just go to JULY SERMONS on the left hand side

and YOUR WORK MATTERS on the right hand side

Rain Showers

I'm sitting on our front porch, while the rain is falling ever so gently, a mist blowing onto me as I sit on the porch swing. It is the perfect temperature outside, not too hot and not too cold. 

Noah is working in the yard, the boys are taking naps, and best of all Shepherd is sitting in bouncy seat experiencing his first rain shower.  

I think that's how God is. I think moments like these are the moments that remind us of Heaven, reminds us of home. These are the moments that remind us of redemption, of what God is making right. These are the moments that bring hope, a remembrance of our Father's touch. Like the rain showering down, God showers down little pieces of His kingdom come, His will be done on earth as it is in Heaven. 

And I just take it in, soak it up, and give thanks.

Psalm 23:1-3

 "¹The LORD is my shepherd; I shall not want.
 ²He makes me lie down in green pastures.
He leads me beside still waters.
 ³He restores my soul.
He leads me in paths of righteousness
   for his name’s sake."

Whatever thy grief or trouble be, take every drop in thy cup from the hand of Almighty God. He with whom "the hairs of thy head are all numbered," knoweth every throb of thy brow, each hardly drawn breath, each shoot of pain, each beating of the fevered pulse, each sinking of the aching heart. Receive, then, what trials are to THEE, not in the main only, but one by one, from His all-loving hands; thank His love for each; unite each with the sufferings of thy Redeemer; pray that he will thereby hallow them to thee. Thou wilt not know now what He thereby will work in thee; yet, day by day, shalt thou receive the impress of the ever-blessed Son, and in thee, too, while thou knowest it not, God shall be glorified. "

- E.B. Pusey, Joy and Strength, quoted in Keep A Quiet Heart by Elisabeth Elliot

Mr. Wide eyed is just hanging out and working on recovery. And we're just trying not to count...each....day until we get home. But of course we are not being successful. We are- God willing- going home in 3 1/2 days.  The above quote was helpful to remember, as I think on the MANY moments that God has sovereignly ordained these past months. And now, as the end of the hospital stay draws near, I pray I will continue to receive each moment as it comes.

Only God knows what the future holds for us, for Shepherd. I hope to be more sure, because of these months, that God can be trusted with the unknown. 

Even now, as I face each consecutive night here in the hospital, I long for this part of the journey to be over. I yearn for the comfort of home and the comfort of my boy in my arms while at home. I hope Noah's grad party tomorrow will be the last time I drive home without my son.

Oh, there are so many questions about the future, but I hope that I feel safer there then I once did.  When we get home we will have soooo much adjusting to do. We have a new normal to find for our family. There are new memories to be made, challenges to face, many new relationships, new disciplines, much learning to be done. There are countless doctors appointments to go to, hurdles to overcome, and much change to experience. 

But how I hope that I can accept this change with gratefulness and most of all trust. The bible says that God loves doing good to us so much that he literally burst out into song over it.

 In Zephaniah 3:17 it says

"The Lord your God is with you,

He is mighty to save,

He will take great delight in you,

He will quiet you with His love,

He will rejoice over you with singing."

That's what I hope for from God in this coming season- to be quieted with His love. 

But I will not presume to know what that will look like. Just that it will be good.

As far as medical stuff goes, Shep has been struggling a little with breathing lately. The plan is just to send him home on a little oxygen and wean him off it as he gains strength. 

With that being said, they realized this morning that he really needed another blood transfusion (this will be like his fifth or sixth, I think). The fact that he had been hanging out highly anemic could definetely have contributed to his trouble oxygenating recently. I am sure he's grateful for a bit of a boost. The weekend should be pretty uneventful-for Shepherd.

 My amazing family is working on Noah's grad party. I desperately wanted to celebrate this huge accomplishment  with my honey but I've been a tad distracted.It is a huge act of love for the people who love Noah so beautifully to give so much of their time, money, homes, and talents to making his graduation special. Thank you, guys. 

Speaking of talents, service, and love- a couple ladies from church came by to visit the other day. They came with the purpose of helping us figure out how  they could serve us and how they could help our whole family figure out our new normal- at church.  It was so thoughtful. We are still trying to figure out what will be possible. How do we be with our church family without exposing Shepherd to sickness? How do we go to church without exposing our other 2 kids to the myriad of germs in their classrooms? What about the simple facts of Shepherd's physical needs while at church? I dunno.

But God does and I am excited that he's going to use many others to help us figure it out.

And GREAT news....

Shepherd has taken over 20mL's by mouth, 2 days in a row!!!!!!

They have been using this special bottle with a really slow flow and he's lovin it. So maybe it will be sooner than we thought to get his ng tube out. Oh, I hope so. Putting that thing down his nose is a rare form of torture.... for both of us. 

Well, I am going to attempt a good night's sleep. Attempt being the key word.

Please pray for all the details that have to come together for Shep's homecoming.

We hope to see many of you tomorrow at Noah's grad party.

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So this is how they take Shepherd to procedures and xrays. He and all of his equipment. Isn't that cute? Aslan thought it was so cool he got a TV in his wagon with him.
Cousins. Many of his adoring cousins got to visit this week, now that were out of the PICU. They have all been praying for Shepherd for so long, never actually having met him. We are so blessed.
Momma time
This is our good-bye RMH picture. It was a long time coming, but it arrived. I pray God will show us clearly how to serve this place in the future.
Ride em cowboy. Aslan's taking "luggage" to the car.

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These are all pics of my boys as newborns. It's just fun to compare and remember. Can you guess which is which?

Shepherd

Aslan

Haddon and Aslan

Haddon