Thursday, December 3, 2015
December 3rd
One year ago today, we brought our little buddy home. How much grace we've seen in the last year! Jackson took his first steps yesterday evening.
Sunday, November 8, 2015
November 8
Though hope was always a real, unbreakable sort of thing in my heart, I'm still not sure that I would have believed you, one year ago today, had you foretold the future and given me a word picture (or a physical photo!) describing exactly how Jackson would look, act, and be exactly one year later. One year ago today Jackson pulled out his breathing tube. (I still feel like laughing and clapping every time I remember that morning!) This morning he was chattering in bed to himself, and then called out, "Ma!" When I went in to his room he was standing up in bed smiling. Unbelievable. Still. I feel like nearly every blog post I write is some feeble, though whole-hearted, attempt to thank God for Jackson. But I never know how to even begin...and certainly wouldn't know how to end.
After we came home from St. Louis (then went back, then came home again), it seemed Jackson just got better and better with each day! But it took months before I ever felt even slightly normal again. Often his very best days were my hardest. My mind would relive...everything. Every detail would play out over and over. And the hurt just wouldn't stop hurting. I honestly don't know when things started to get better. It happened so gradually. But I remember one day thinking, "Wow. I don't really hurt." Isn't it amazing that healing can happen without us even realizing it? I don't put much stock in, "Time heals all wounds." It just isn't true. But God can heal wounds. And He can do the absolute unthinkable--to actually make you stronger because of your weakness. How is it possible? I have no idea. But He has kept me...and if you knew how low my heart and my spirit sunk in the last year you would realize--that is a miracle. A brother at church prayed this verse recently, and isn't it wonderful? "The eyes of the Lord move to and fro throughout the earth that He may strongly support those whose heart is completely His." 2 Chronicles 16:9 Isn't that amazing? So absolutely tender, and yet so absolutely strong and secure. The love of God! I am so grateful for Jackson. And so grateful for not just 9 months, or 1 year, but a lifetime of the strong support of God. "Hallelujah--what a Savior!"
Jackson continues to do very, very well. He has always done things on his own timetable, and walking has been no different. He is pulling up, cruising on all the furniture, holding onto only the smallest, flimsiest objects for support--but just not ready to take his own steps. We're just fine with that. Because this kid is a nightmarish explorer! He figured out how to open his baby gate, has almost figured out how to pull open the oven door, is drawn to light sockets like a moth to flames, and gives his mom a run for her money nearly every waking moment! (!) I feel tired just writing that! But it has certainly been a strange experience feeling grateful for every aspect of his life and health. Mason and I have joked about even feeling like, "Oh look! He knows how to pitch a fit! Isn't that wonderful?!" Haha! Of course we aren't grateful for fits, but we are grateful for the strength, the health, the mental awareness, the social interaction...every single aspect of how tremendously, miraculously well he is doing. It has been such a joy and privilege to send updates and pictures to some of his doctors and nurses in St. Louis. The work they do is indescribable in its value and effects!
Jackson is 14 months old! Thank you for every prayer!
After we came home from St. Louis (then went back, then came home again), it seemed Jackson just got better and better with each day! But it took months before I ever felt even slightly normal again. Often his very best days were my hardest. My mind would relive...everything. Every detail would play out over and over. And the hurt just wouldn't stop hurting. I honestly don't know when things started to get better. It happened so gradually. But I remember one day thinking, "Wow. I don't really hurt." Isn't it amazing that healing can happen without us even realizing it? I don't put much stock in, "Time heals all wounds." It just isn't true. But God can heal wounds. And He can do the absolute unthinkable--to actually make you stronger because of your weakness. How is it possible? I have no idea. But He has kept me...and if you knew how low my heart and my spirit sunk in the last year you would realize--that is a miracle. A brother at church prayed this verse recently, and isn't it wonderful? "The eyes of the Lord move to and fro throughout the earth that He may strongly support those whose heart is completely His." 2 Chronicles 16:9 Isn't that amazing? So absolutely tender, and yet so absolutely strong and secure. The love of God! I am so grateful for Jackson. And so grateful for not just 9 months, or 1 year, but a lifetime of the strong support of God. "Hallelujah--what a Savior!"
Jackson continues to do very, very well. He has always done things on his own timetable, and walking has been no different. He is pulling up, cruising on all the furniture, holding onto only the smallest, flimsiest objects for support--but just not ready to take his own steps. We're just fine with that. Because this kid is a nightmarish explorer! He figured out how to open his baby gate, has almost figured out how to pull open the oven door, is drawn to light sockets like a moth to flames, and gives his mom a run for her money nearly every waking moment! (!) I feel tired just writing that! But it has certainly been a strange experience feeling grateful for every aspect of his life and health. Mason and I have joked about even feeling like, "Oh look! He knows how to pitch a fit! Isn't that wonderful?!" Haha! Of course we aren't grateful for fits, but we are grateful for the strength, the health, the mental awareness, the social interaction...every single aspect of how tremendously, miraculously well he is doing. It has been such a joy and privilege to send updates and pictures to some of his doctors and nurses in St. Louis. The work they do is indescribable in its value and effects!
Jackson is 14 months old! Thank you for every prayer!
Thursday, October 8, 2015
Friday, September 4, 2015
#1
I distinctly remember counting the days...1, 2, 3, 4. Now we can officially count the years. God is good!
Thursday, September 3, 2015
Birthday countdown! #2
"As soon as I saw you, I knew an adventure was about to happen." -Winnie the Pooh
Wednesday, September 2, 2015
Tuesday, September 1, 2015
Friday, August 21, 2015
Saturday, August 8, 2015
11 months
Jackson is 11 months old! Unreal. He is figuring out the whole "mobility" thing excellently. We are all racing to beat him to beads, crumbs, small toys, and his personal favorite chew toy...flip flops. So much for a germ free environment! He is doing a very effective army crawl right now, but has been working on maintaining his balance while on his knees. He's so close! He has two teeth, but is still very much teething. Maybe he'll be able to chew a birthday cupcake after all. ;)
He had a cardiology appointment Tuesday that went very well. He has not developed any further clotting or narrowing at his stent site, so he was able to stop his Lasix and Sodium. We are down to only two medications..antibiotics and aspirin! It feels wonderful. Thank you so much for praying for Jackson.
Wednesday, July 22, 2015
Bittersweet
Remember this post from last October? Below is a picture of Jackson from today! We are so grateful. Thank you, Sarah (and so many others!), for being absolutely fantastic nurses. Thank you for loving our buddy too--it made it so easy for us to entrust him to your care. We can't wait to bring him by for a visit sometime! You won't believe your eyes!
Tuesday, July 14, 2015
10 months
Our little buddy is changing every day lately! He's learning how to passionately express his displeasure (oh dear), but also learning how to better communicate his excitement and love...he's such a sweet little munch. He gets embarrassed and hides his face, claps when he's excited, and recently decided he loves his back rubbed while he's falling asleep. He also discovered recently that if he holds mommy's free hand during his back rub she can't escape as easily. Sneaky! He babbles all the time, but unfortunately has only learned one real word, "Dada". We have daily "mama" practice sessions but so far it just won't take. :)
We recently took Jackson to a highly recommended doctor for a second opinion regarding his long-term antibiotic use. Mason and I very much desire that Jackson could get off of these antibiotics as soon as is safely possible. We were praying for clear direction. The doctor didn't give us quite the report we were hoping for, but did give clear direction...he agrees with our other infectious disease doctor that Jackson needs to continue this medicine indefinitely. He said he will continue to consider the possibility of stopping it, but at this time feels it would be too risky.
Our cardiology appointment to reassess Jackson's stent status was postponed by the cardiologist being out of town, so Lord willing we will find out more about that in August. If that looks good he should be able to stop his Lasix at that time.
After a nearly eternal wait, there is evidence of a little tiny baby tooth about to make its debut. I hope a few more will follow quickly, because I can hardly buy enough baby food to fill that belly! We are loving the effects of J's enormous appetite...Charlie said the other day while we were driving somewhere, "Mommy, I want you to just think about these squishy baby knees." :) A very pleasant thought, indeed.
We are all so grateful for our pal. How is it possible one year is almost here?
We recently took Jackson to a highly recommended doctor for a second opinion regarding his long-term antibiotic use. Mason and I very much desire that Jackson could get off of these antibiotics as soon as is safely possible. We were praying for clear direction. The doctor didn't give us quite the report we were hoping for, but did give clear direction...he agrees with our other infectious disease doctor that Jackson needs to continue this medicine indefinitely. He said he will continue to consider the possibility of stopping it, but at this time feels it would be too risky.
Our cardiology appointment to reassess Jackson's stent status was postponed by the cardiologist being out of town, so Lord willing we will find out more about that in August. If that looks good he should be able to stop his Lasix at that time.
After a nearly eternal wait, there is evidence of a little tiny baby tooth about to make its debut. I hope a few more will follow quickly, because I can hardly buy enough baby food to fill that belly! We are loving the effects of J's enormous appetite...Charlie said the other day while we were driving somewhere, "Mommy, I want you to just think about these squishy baby knees." :) A very pleasant thought, indeed.
We are all so grateful for our pal. How is it possible one year is almost here?
Tuesday, July 7, 2015
Little friend
Jackson's sweet buddy Oliver is having a port implanted today to better manage his severe hemophilia. Would you pray for him and his family?
We love you, lil champ! We know you'll do great.
We love you, lil champ! We know you'll do great.
Monday, June 22, 2015
Unexpected blessings
When Jackson was born we couldn't help but fear that he would never live to see the summer. And even if he did survive, we expected his care and needs would prevent any long trips--at least for several years. But here we are...headed home from a wonderful week and a half vacation with Mason's family in Gulf Shores. Wow--overwhelming! All we can do is return and give thanks to God. That and enjoy every moment! Additionally, Mason's mom was scanned recently and was declared cancer free. We are overjoyed!
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