Wednesday, March 7, 2012

Edmond is 8 months old today!

Isaiah 40:11

 11 He tends his flock like a shepherd: 
            He gathers the lambs in his arms and carries them close to his heart;  
He gently leads those that have young.

Edmond is 8 months old today. He is our little sweetheart, cuddle bear, Kachoo-choos! He has been sleeping through the night on a regular basis and he usually wakes in the morning in a good mood, cooing and smiling. He is continuing to have spasms, but they have decreased in duration, and frequency since his last steroid treatment. Some are more intense than others, and he has about 2-3 a day. He no longer has them every time he awakens from a nap, which is a good thing. We have decided to hold off on starting another medication Sabril (which has a 30% chance of causing peripheral blindness), we are waiting the spasms out and praying Edmond will outgrow them and not have to have anymore medication treatments for them. He's gone through so much trying to stop them and none of the steroid treatments have completely worked, although the spasms are less interruptive as they once were. We are trusting God to intervene as we are taking a step of faith in this area and praying for development of his brain and motor skills regardless of what the doctors say. 

Edmond continues to do well on his anti-seizure medication and still has not had a breakthrough seizure since December. Wow, thank God for that, I hadn't realized it had been that long until just now. Edmond is still having trouble with head strength and is not yet able to hold up his head on his own while in an upright position. He has physical therapy on Wednesdays and Fridays and we are always working with him on his PT homework. We started giving him baby oatmeal cereal on Saturday and he is doing well. I added pears and he is doing fine on them too. The first day he spit it out numerous times before swallowing, but improved the next day and by day three he wasn't spitting out the oatmeal any longer, which shows he has a capacity to learn basic skills to eating. Edmond demonstrates an awareness of his surroundings and sounds. For example, right now he will only sleep if I come and lay next to him in our bed, as soon as I leave or come into the front room, trying to type this update, I can hear him cooing and calling for me. We are unsure of what he is able to actually see, but are praying for his vision. At times it appears he sees very well and tracks momentarily, but mostly his eyes are not focused and do not completely connect on persons or objects. Edmond is outgrowing his infant car seat and will be in a regular car seat very soon. We need wisdom about how we can best transport him comfortably and with equipment that will support his needs well and not injure our own bodies while moving him around. He is already 21 pounds, and to tell you the truth, I'm hoping he loses some weight and thins out as I whine him off of breast milk, he's hard to get around the house, let alone around town. Those type or decisions come along with a very difficult thing that Adonis and I have to face, which is that these are concerns that parents have to navigate through for children with "special needs," which is a term that we have not been able to come to terms with nor can we even begin to want to identify with, but here we are being forced to. Pray for us on our journey, we have moments of joy and great discouragement each day. Here's some pics I took today of Edmond and Eden. 

I've been clinging to Isaiah 40 over the past few months. Some of you know I have a tattoo on my shoulder that references this chapter. The past few days I've been meditating on the end of verse 11  ....

"He gathers the lambs in his arms and carries them close to his heart;  He gently leads those that have young." 

So many times I feel that the Lord is not really paying attention to what we are going through, and how can He be putting us through this. I have to admit to you, I did believe that I was "too special" to God to have something like this happen in my life and now that we are going through this with baby Edmond I wonder at God and his plan. I wonder if He is really there... really paying attention to us at all. "He gently leads those that have young".... Yes! that's me! I have these young babies and I need the gentle touch of the LORD, because He knows that my heart is tender for these little ones who are depending on me and whose little hearts are still so innocent and fragile. This process doesn't seem gentle at all though. But this verse reminds me, God has not forgotten me... then in the conclusion of this chapter that is themed as comfort for the people of God it says.... 

 27 Why do you complain...Why do you say... “My way is hidden from the LORD; my cause is disregarded by my God”? 

um... me again... does God see us? Why is he disregarding us??? 
And then here comes the HOPE!! 

28 Do you not know, (Adonis and Candace)
 Have you not heard?
The LORD is the everlasting God,
   the Creator of the ends of the earth, including Edmond.
He will not grow tired or weary,
   and his understanding no one can fathom.
29 He gives strength to the weary
   and increases the power of the weak.
30 Even youths grow tired and weary,
   and young men stumble and fall;
31 but those who hope in the LORD
   will renew their strength.
They will soar on wings like eagles;
   they will run and not grow weary,
   they will walk and not be faint.

Lord make this scripture alive in our hearts that we can carry on the task at hand and trust in YOU no matter what, it ain't easy Lord, so please help us. 


Candace Segrove said...

Nawel Nijem Voelker posted on FAcebook to us on March 9th.

Candace, your honesty is so genuine and vulnerable. I felt hesitant to try and encourage you at all because I haven't been through what you and Adonis are going through, but I have been through some rough roads (as you know) and know this: the Lord allows these things in our lives BECAUSE we're special to Him - there's a reason... nothing is by circumstance or coincidence - He holds the world in the palm of His hand, and He is mindful of every hair on our head. He knows every single emotion, every tear we cry, every moment we feel like screaming and beating our hands against a wall. I was reminded of Psalm 139 - How precious are your thoughts about me, O God. They cannot be numbered! I can’t even count them; they outnumber the grains of sand! And when I wake up, You are still with me!" He is paying attention, my friend! ♥ His way sometimes is to stretch and grow us through challenges. James 1:3 - "For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing." It's not what we want at the moment, but He promises us that He works it all together for good. He HAND PICKED you and Adonis to be Edmond's parents, and there's a plan going on behind the scenes that we can't see sometimes.

I love the verses you included in the post, and I'm praying right along with you - that the Lord would make them alive and breathing, right along with your heartbeat, every day as you parent Edmond and Eden. You are not parents of "a child with special needs" - it's not about boxing yourself in and then identifying with whatever connotation that brings about in your mind. You are parents of EDMOND and EDEN, and you've been given a prized, heart-wrenching (at times), rewarding, joyful, hard, not-for-the-faint-at-heart mission of parenting these two, and our God will supply ALL of your needs as you need them (Phil 4:19) - He's got an arsenal of tools for you and Adonis, girl, and He will continually and generously supply them according to your needs and those sweet babies' needs. :) WE LOVE YOU, Segroves! :) xoxo

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