Ridge is at the hospital with Sawyer and Bdawg. He is getting a blood transfusion. He wasn't quite at transfusing level but we weren't sure when he went in this morning. He his not bleeding, just needing blood. He went fifteen days without getting ANY blood transfusions! His diapers have all looked pretty normal and he is growing so fast!
Today at the hospital he weighed 10.15 kilos, which is like 23 lbs. he was an INCH taller than two weeks ago! I know it could've just been a discrepancy, but still....He is walking!!! and he's so so cute.
Everyday, in a moment that I might get down about all of this, I hear that voice again saying "it's over." It is a peaceful sound and it is not something that I'm reminding myself I've heard...I am STILL hearing it. God is good.
Some quick recaps in our road...
Last July, we went to the hospital...we knew things weren't great and Ridge was basically about to begin fighting for his life. His hemoglobin was at dangerously low levels and when he was scoped and biopsied, we got news he had MLT. I didn't really know what a normal scope image would look like, but when I saw the pictures of Ridge's belly inside, I didn't know I was looking at something abnormal. all over the surface were bumps, but they looked "normal" color bc all the blood had been washed away during the scope. I asked how a normal stomach looked because to me his didn't look bad, and the doctor showing me the photographs said, "you see this tiny spot of pink, smooth surface? that's how our stomach looks....his all looks like this bumpy part." weird. surreal. scary. and i'm sure his intestines look/looked the same way, they just couldn't get good pictures there...bc...well, there is "stuff" in your intestines... :) so we began a horrific journey. life was literally turned upside down. we went from multiple blood transfusions and platelet transfusions to a day of normal, then to an outpouring of bleeding, went to the ICU covered in our son's blood that he just kept throwing up....saw 8, 9, 10 red dirty diapers a day for a week at a time...slept little to none....came to grips that God might chose to take him from this earth. Put him on a lot of medicines, the safest ones we could, and watched him slowly get better. Moved to a regular hospital room and quickly watched Ridge decline again. Witnessed him coding and almost dying...went back to the ICU where again we were covered in his blood....four huge red vomits in an hour....lots of red diapers....nurses pushing blood into him with a syringe bc waiting on it to go through an IV pump was too slow. Witnessed him getting blood transfusions and being at exactly the same hemoglobin as before...gaining no ground. Pushed more of the medicines...mostly the steroids....watched him get puffier and puffier and unrecognizable. The bleeding stopped. We made it weeks, still living in the hospital, without a blood transfusion. As we came off the steroids and weaned a bit of the octreotide, bleeding resumed and we had a few more scary times, but none like those first two. Finally we were able to go home, after five long months. Ridge hadn't seen his house in five months. He had changed so much. He was still on so many medications, and it wasn't two days home before we were back and in bad shape. We were able to get the bleeding under control with high dose steroids again and he pulled through yet again. december 2009-present was filled with so much back and forth from the hospital to home I can't even count. In may he got an immunization and bled horrendously. He managed to keep it all down without vomitting that time but he was back to the awful amounts of awful bloody diapers. He received 25 red blood cell transfusions in 10 days time and also received many platelet and plasma transfusions. After waiting it out for five days or so, we had a somberish birthday party for him and sawyer and their friends, right there at the hospital...and then we agreed to start steroids again. The bleeding stopped again. After that, we fought a port infection all summer which caused him to bleed a lot. We finally had surgery to remove the port. Shortly after that is when I heard a voice from heaven, for sure, say, "it's over." And we have been home for fifteen days. Ridge hasn't needed blood in all that time. And while our trials have been difficult and our year has been hard, we have fought the good fight. We have persevered in our faith and our journey and we have preserved our son's life. None of it alone. Only by the grace of God. Only by his hand. his provision. his faithfulness. He is enough. He is more than enough. He has carried us. Will no more darkness fall upon us? Who am I to say? Today may be our worst day yet. But it may not. And the light...the Light always shines brighter than the darkness. We are walking out of this darkness and back into some light. Thank you, Jesus. Thank you for your faithfulness, your provision of wisdom and patience and peace. Thank you for preserving Ridge.
I have no more words. I have nothing else that I could ever ask God to do for us. He has been enough. I will want for nothing, ever again, bc nothing that seemed to matter before matters anymore. My God is mighty to save. And he has given us the patience of Job through this trial to watch and wait and trust. And he has refined us. And maybe he isn't finished. But he has proven himself faithful. I am so glad we have been patient.
To God be all glory and praise!
musings of life and laughter...composed between loads and loads of dirty laundry (which we will attempt to avoid airing here)... stories of trials and faith, of falling and rising, and of the steadfast arms of our strong, strong God.
- alisha
- wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne
The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ
The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ
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2 comments:
I have often been brought to tears while reading your blog, and here I am again, sitting at the computer crying. I just feel like I want to say to you that we are all still out here, reading your amazing accounts of your difficult journey -- we are still here and we are still praying. But I also want you to know that we are rejoicing with you over the way Ridge is improving, and we are rejoicing with you over the peace and assurance you are receiving from the Lord. Love you, Alethea
Alisha and Brandon,
You guys are the Godly parents that we all should be. Putting your father first and your son second you have managed to stay strong in your faith throughout this horrible journey. I pray that the worst is over and that anything else will seem so small in comparison. You have no idea how many lives you've touched along the way. He truly does have a plan for you even if you feel yourself questioning that plan. Stay strong!
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