-Scope of his throat by ENT to see if his airway is narrowing from the hemangioma in his throat. (this is in the process of being set up and the dr who is doing it said he can fix whatever if any problem there is while he is in there. Max will have to stay the night in the hospital after the procedure if that is the case)
-Talk to his nuero surgeon about his risk for stroke.
-have his opthomologist specificaly check his retnas
-have a hearing test that checks his brain waves instead of the one where he turns his head toward the speaker and toy.
Micah asked her can we hope for a normal life for him and she said sure you can but don't go bury your head in the sand and pretend there is nothing wrong She said some of her patients are in school now and doing good, they may be a little more clumsy than most (I guess from the lack of oxygen to the brain) but some of them are develpentaly disabled. We kind of have to wait and see what happens. In the meantime she doesn't want to see him in the Vascular Anomalies clinic but on the 12 of March she is going to speak to thier radiologist at UCSF to see what he thinks about Maxwells MRI/MRA since he has seen 70 of these PHACE kids. I guess looking at all we are doing now it does seem like we are moving in a forward motion with everything. I was just seriously finding it hard to not shut down after his appointment. That's a lie, I did shut down for about 20 minutes. It was then God spoke to me and said, Stephanie, he is not yours. He is MINE. You are puting your faith in all that you can do and all the Dr's can do. I want you to trust Me!!! He continues to shop me where my faith needs to be placed. And to be thankful for every part of this. It is through this where His glory is going to truly be revealed.
So my prayer now is that I would just be thankful for everything. Especially thankful for every malformed vessel in Maxwell's brain that was so delicatly fashioned by the Master for his eternal purpose because He IS good! Last night at church we sang this song. I have replaced a few words but this is what the Lord wants me to remember:
For I know that You are good
God I know that all you do is good
So I put his life in Your Hands
he's Yours alone
he's Yours alone
Surrender, Lord I raise my hands to You alone
to You alone
So if you want to pray for our family please pray for continued thankfulness and peace. It seems easy at the moment when everything is a little calm but if something does happen I would like to keep the same attitude of thankfulness. So I guess that's all for now. I will post again when there is more info.
3 comments:
I know it's very overwhelming right now and you know where to go if you need to chat :) we've all been there and we know how you feel.
For me, it's weird when i think back to Elyse's first year. She was so critical and practically lived in the hospital. Our doctors were amazing and they told me, you'll get through this. I had days were i just wanted to hide in the closet and disappear. I had moments at work where I had to run to the rest rooms and just cry it out. it was very hard. BUT look at her now. :) Elyse is doing amazing. Sure, we still have things going on here and there, but it's nothing compared to the first year. It's so I tell people, I can't believe we went through all of that.
so big hugs to you and your family and know that we are praying.
I too have had those days when I was left totally numb after an appointment. I wish that I could could be there to offer a hug, or something tangible. I will however continue to pray for you and Maxwell and your entire family.
Of course there are no crystal balls, no way to see what God has in store for your little man. I would just like to offer you hope. Hope from a mom that watched her child struggle developmentally in the first few years of life and whose child is now in Kindergarten learning to read and write and even do simple math. My daughter played soccer last fall, and although she might not have been the most coordinated or athletic child, to me she was as amazing as an olympic competitor. There were days in the beginning I wondered if she was ever going to be able to walk, and there she was out on the field kicking a ball.
You are doing a great job of keeping your eyes and heart focussed on God right now. I encourage you to continue seeking out his comfort and guidance. He has a way of using these experiences for a wonderful, amazing purpose. You may not see it now, but when you look back one day you will be amazed at what has been accomplished in your life!
Kim
thanks ladies. I really can/;t wait for the day when I can look back in awe of what we have made it through. Thank you for praying for our family, please continue praying.
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