Thursday, September 3, 2009

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.



5 comments:

Anonymous said...

LOVE your hair! i have got to come have you cut mine! also so excited for the little 11 yr. old boy! that is awesome news! please keep us updated! hope we can hang out again soon!!!

cantalupis

Stephanie said...

this post was GREAT! love hearing of your walk thru this journey with Hi, adn seeing His LIVING Truth encourage and sustain you all.

laughed OUT LOUD at the kitty cat comment!!!

and i DID notice your hair--looks GREAT!

thanks for always being so real, friend.

PRAISING The Lord for His PERFECT care of your son, and all of us.

LisaJoelm said...

Stephanie,

you don't know me, my name is Lisa. Right now I'm in Seattle at the Children's Hospital with my son. We have been going through a some what similar experience. We have been in Seattle for over a year now, I just wanted to say I love your blog, I love to read about your faith and devotion to the Lord. You and your family will be in my prayers.

LisaJoelm said...

Yes I'm from Palmer, went to Palmer High and now I live up on Lazy Mountain. Who is your family? perhaps I know them. Thank you for your prayers, at this point we are praying that his bone marrow transplant is successful in getting rid of his disease. We'll find out on Friday how his marrow is looking. :)

Rachel said...

Hi! I'm Rachel and my friend Noelle told me about your blog... I believe she goes to church with you. My son Gabe (almost 3 yrs old) has a trach, vent, etc. If you ever want to talk just email me... I know our sons don't have the same diagnoses but I know what it's like to have 3 little ones and the youngest one sick...

Blessings from a sister in Christ,

Rachel