Where do the months go?? Love you, buddy! Your 2nd birthday will be here before we know it!
Tuesday, July 5, 2016
Thursday, June 16, 2016
21 months
I'm a couple of weeks behind, but this little guy is now 21 months. I thought I would write a brief update since I haven't for a while. Overall Jackson is doing very, very well. He doesn't usually walk from room to room--he runs. :) He continues to be seen by a physical therapist once a month in our home. He seems to enjoy her visits, and she gives us lots of ideas of ways we can work with him throughout the month. A few weeks ago he was evaluated by a speech therapist and scored several months behind on his speech. She will begin seeing him next week on a biweekly schedule. He seems to us to occasionally be frustrated by his inability to communicate, so we're hoping and praying his speech will develop and "catch up". (I'll probably be eating my words on that last sentence before I know it!) He continues to take only two medications a day--aspirin and antibiotics. Jackson has had increased pressure in his pulmonary artery since his corrective heart surgery. This is considered normal after this procedure, because by nature of the surgery the artery must be stretched (we're talking really small vessel and really small stretch :)). The stretch leads to a narrowed vessel...which leads to increased pressure required to pass blood through. However, his pressures have always been higher than the new "high" following surgery. They were staying the same for about year following the surgery, but at our last visit had risen slightly. Our cardiologist said they are not at a critical level (as of February), but that he suggested cardiac catheterization (viewing the vessel from the inside) when Jackson is two to see what's causing this increased narrowing and how best to correct it. We will return to see him in August, and plan for this procedure to be scheduled shortly after at St. Louis Children's. I will update closer to the time, but we would sure appreciate your prayers for this. And really just your prayers that God would preserve and strengthen his body in every way. We continue to do monthly pacemaker checks on him at home and he tolerates these very well. His pacemaker continues to work wonderfully. He is 20 something pounds of concentrated personality and vivaciousness. Always on the move, always exploring, always in trouble, and just as cute as the day is long. Maybe cuter! Also, the funniest thing he's ever seen is me going down his baby slide as a joke. He laughed so hard he fell over. Haha!
Thank you for praying for us! Aunt Lauren and cousin Madi took several of the pictures below...and I love them! I put the last picture in to show his sweet, fluffy growing hair. Another miracle! ;)
Thank you for praying for us! Aunt Lauren and cousin Madi took several of the pictures below...and I love them! I put the last picture in to show his sweet, fluffy growing hair. Another miracle! ;)
Friday, May 6, 2016
Nurse's Week
It didn't take us long, in our stay at St. Louis Children's Hospital, to realize the vital role of the nursing staff. In fact, when I was still in Columbia and Mason and Jackson were in St. Louis, one of the very first things I remember him telling me was, "He has a really great nurse." Truly--I think I could gush for an entire post about our nurses and not even slightly exaggerate. Dear nurses...I want you to know how much you helped us. You were quiet, calm, and confident. You were optimistic though realistic. You were knowledgeable without being pushy. You were a constant presence but let us feel like we were alone with Jackson. You pushed the doctors to let me hold him that first time. You were shocked at our tears when we were told Jackson would be severely disabled, saying, "You never know! He may do so well." You came in after you saw us pray with him one night and said, "I just want you to know I'm praying for him also." You made me chocolate candy for my birthday. You shared your hurt and your heart with us in the form of a little onesie passed on from a child who lost their fight. In short--you loved our son. What more could you do for us than that? I just want you to know this...we love you too. Thank you. Your sacrifices are recognized, appreciated, and accomplishing a world of good. Forgive us for not remembering all of your names! We will never forget your faces and your kindness.
Tuesday, May 3, 2016
Friday, April 8, 2016
Tuesday, March 22, 2016
What if?
I won't name any names, but one of our children has lately taken to imagining. Not the exciting, creative, childish sort of imagining, but the big, scary, fearful sort. It usually goes like this: "Mom, I just thought about something that made me really sad." "Oh, really? What was that?" "What if (insert tragic, fearful, imaginary event)?" My response to the last imagining was to tell my child they didn't need to worry about that. Then I asked, "Do you know why?" Before I could answer my question, the other child piped up with, "Because that will never happen!" But that's not really the truth. And it's not a helpful answer.
It seems so silly to be counseling my child through imaginary tragedies. I'm tempted to roll my eyes and brush it off. But, unfortunately, I can totally relate. I used to spend a good deal of time caught up in fearful imagining myself. I would read stories of real life tragedies and think, "What if that happened to me?" Or much of the time I didn't even have to read something. I worked as a hospice nurse for almost five years. The tragedy was there right in front of me. To be honest, I almost felt it my duty to ask, "What if?" Like if I didn't then I couldn't be prepared. But I never did get prepared...I just got more and more fearful. And, as I mentioned above, "That will never happen!" was never a helpful answer. I knew it could happen, and given the vast amount of tragedy around me, knew it probably would happen. At some point in time--in one way or another. When Jackson was born two of my greatest fears were realized. I had always, always feared the death of one of my children, and I had also feared, for some time, severe disability that would leave my child in a cage of pain and darkness. I always wondered, "What if?" "How could we survive it?" "How could we continue life?"
But, by God's grace, I rarely ever ask, "What if?" anymore. I can now see how unhelpful and destructive that question really is.
When I imagine myself in the middle of my worst nightmare, I imagine the horror, pain, etc...without God. God doesn't give us future grace before it's needed...He gives it when it's needed. Honestly I can't imagine what these imaginary tragic events would be like--because I don't yet know the grace He would give. What if my child suffered a severe brain injury and was teetering on the edge of death itself? But what if God gave us a Christian doctor who prayed bracing, believing prayers that reminded us of the goodness and power of God? What if he was whisked away and I never even got to see him? But what if God gave us a nurse who was willing to sacrifice three hours of her time to push my hospital bed this way and that and then wait and wait and wait...just so I could get one glimpse of him before he left, perhaps forever? What if my child's heart stopped beating because it was malformed and his blood had all leaked into mine? But what if the doctors and nurses were so skilled as to enable his heart to begin beating again and quickly recognize his need for blood replacement? What if he died? But what if he lived again? What if he lived but had severe cerebral palsy and was never able to walk, talk, or eat? But what if the reports were wrong and he walked, talked, and ate? What if we didn't know that for months and were separated from our other two children, our home, our church? But what if God was right there in every minute and detail...blessing, comforting, keeping? I don't know the future. I can't know it. But I know my God, and I desire more and more to honor Him not in my fearful worrying but in my confident knowing. "Those who know Your name will put their trust in You." Psalm 9:10
I want more of the exciting, creative, childish sort of imagining. I want to look to God for, "More than we can ask or think." (Ephesians 3:20) And if I give into "what if's" I want them to be the sort from the middle of the book of Esther. Not only was her entire ethnic group about to be annihilated, but her life hung in the balance as well. Her cousin Mordecai, however, turns the situation on its head when he asks, "Who knows (what if?) you were appointed queen for just such a time as this?" Esther 4:14
It seems so silly to be counseling my child through imaginary tragedies. I'm tempted to roll my eyes and brush it off. But, unfortunately, I can totally relate. I used to spend a good deal of time caught up in fearful imagining myself. I would read stories of real life tragedies and think, "What if that happened to me?" Or much of the time I didn't even have to read something. I worked as a hospice nurse for almost five years. The tragedy was there right in front of me. To be honest, I almost felt it my duty to ask, "What if?" Like if I didn't then I couldn't be prepared. But I never did get prepared...I just got more and more fearful. And, as I mentioned above, "That will never happen!" was never a helpful answer. I knew it could happen, and given the vast amount of tragedy around me, knew it probably would happen. At some point in time--in one way or another. When Jackson was born two of my greatest fears were realized. I had always, always feared the death of one of my children, and I had also feared, for some time, severe disability that would leave my child in a cage of pain and darkness. I always wondered, "What if?" "How could we survive it?" "How could we continue life?"
But, by God's grace, I rarely ever ask, "What if?" anymore. I can now see how unhelpful and destructive that question really is.
When I imagine myself in the middle of my worst nightmare, I imagine the horror, pain, etc...without God. God doesn't give us future grace before it's needed...He gives it when it's needed. Honestly I can't imagine what these imaginary tragic events would be like--because I don't yet know the grace He would give. What if my child suffered a severe brain injury and was teetering on the edge of death itself? But what if God gave us a Christian doctor who prayed bracing, believing prayers that reminded us of the goodness and power of God? What if he was whisked away and I never even got to see him? But what if God gave us a nurse who was willing to sacrifice three hours of her time to push my hospital bed this way and that and then wait and wait and wait...just so I could get one glimpse of him before he left, perhaps forever? What if my child's heart stopped beating because it was malformed and his blood had all leaked into mine? But what if the doctors and nurses were so skilled as to enable his heart to begin beating again and quickly recognize his need for blood replacement? What if he died? But what if he lived again? What if he lived but had severe cerebral palsy and was never able to walk, talk, or eat? But what if the reports were wrong and he walked, talked, and ate? What if we didn't know that for months and were separated from our other two children, our home, our church? But what if God was right there in every minute and detail...blessing, comforting, keeping? I don't know the future. I can't know it. But I know my God, and I desire more and more to honor Him not in my fearful worrying but in my confident knowing. "Those who know Your name will put their trust in You." Psalm 9:10
I want more of the exciting, creative, childish sort of imagining. I want to look to God for, "More than we can ask or think." (Ephesians 3:20) And if I give into "what if's" I want them to be the sort from the middle of the book of Esther. Not only was her entire ethnic group about to be annihilated, but her life hung in the balance as well. Her cousin Mordecai, however, turns the situation on its head when he asks, "Who knows (what if?) you were appointed queen for just such a time as this?" Esther 4:14
Tuesday, March 8, 2016
A year and a half
How is it possible this buddy has been gifted to us for one and a half years? Happy 18 months, Jackson! We couldn't love you more.
"In God we have boasted continuously, and we will give thanks to Your name forever." Psalm 44:8
"In God we have boasted continuously, and we will give thanks to Your name forever." Psalm 44:8
Saturday, February 6, 2016
Monday, January 4, 2016
16 months
We had a very blessed Christmas season! Jackson had a difficult time sleeping during our Christmas vacation down south, but that provided several extra opportunities of snuggling and marveling at the grace of God to us in Jackson's life. We have always been adoring parents, and have always had some reality of the fact that our children are a gift, and life is only a short vapor. But "reality" takes on a new meaning when your child is given back to you from the edge of the grave. I marvel at the gift of Jackson's life. But isn't it wonderful that Jackson isn't the goal? I cling to and cherish his life. I love all of our kids with my whole heart. But they can't satisfy me. Jackson was a nightmare these past two weeks with his sleep schedule and fussiness! So at the same time that I'm reveling in his life I'm looking away from him to Someone else just to help me survive his life! Crazy. But perfect. There have been a few times when those who prayed for Jackson, without ever meeting him, have finally met him, and I can almost feel their disappointment! He's just another imperfect human being. Yes, physical life is a gift. But it's not THE gift. Jackson is a baby. But he's not THE baby. That's why I'm extra thankful this Christmas season. Jesus was THE baby, THE gift. He never disappoints. He always satisfies. He gave me my three little gifts and gives the grace I need to steward them and give them back to Him in the end. Praise the Lord!
Over the last two weeks Jackson progressed from a few unsure steps here and there to walking everywhere in the house. He has always been cautious when it comes to mobility. He waits till he's sure he can do it before he even tries. So I guess it wasn't surprising that he changed so quickly! He doesn't even hesitate to take off walking now, but usually still keeps his arms high over his head for extra balance. It's a sight to see. ;) He has had noticeable weakness for some time in some of the muscles in his lower legs (a common preemie problem). This has caused his ankles to roll inward, and out of alignment. The therapist decided it would be good to go ahead with orthotics to attempt to correct this, so he was fitted for those and should get them in soon. Other than that he gets glowing reports at each doctor's visit! His favorite word right now is "Breeze"--the name of his grandparents' dog. :) We do monthly pacemaker checks from home now, and he tolerates those well. He adores his two older siblings almost as much as they adore him. They are so precious with him!
In keeping with true Jackson fashion he gave us a bit of a scare this week when he woke up from a nap with a purple hue to his lips, fingers, and toes. His fingers and toes were also very cold to the touch. We somehow ended up with the volunteer ambulance in the driveway and Jackson inside getting his oxygen saturation levels checked. They checked out fine though, so we talked with our doctor at home and decided to just monitor him closely (he was acting perfectly normal). It was gone within a few hours, but we are still keeping a close eye. We continue to appreciate your prayers for Jackson. He is a very healthy boy overall, but still has a complex little body.
Mason was able to make contact recently with the doctor who delivered Jackson, and who prayed with Mason while Jackson was in cardiac arrest. It was such a precious conversation, and an obvious encouragement to him to hear how his prayers had helped us. Not to mention hearing how Jackson is thriving! He was a vital piece in the puzzle of God's loving plan for us. We are so grateful this doctor.
Since I'm a month behind on posting AND it was the holidays, you'll have to excuse all the pictures!
-Rachel for the Vanns
Over the last two weeks Jackson progressed from a few unsure steps here and there to walking everywhere in the house. He has always been cautious when it comes to mobility. He waits till he's sure he can do it before he even tries. So I guess it wasn't surprising that he changed so quickly! He doesn't even hesitate to take off walking now, but usually still keeps his arms high over his head for extra balance. It's a sight to see. ;) He has had noticeable weakness for some time in some of the muscles in his lower legs (a common preemie problem). This has caused his ankles to roll inward, and out of alignment. The therapist decided it would be good to go ahead with orthotics to attempt to correct this, so he was fitted for those and should get them in soon. Other than that he gets glowing reports at each doctor's visit! His favorite word right now is "Breeze"--the name of his grandparents' dog. :) We do monthly pacemaker checks from home now, and he tolerates those well. He adores his two older siblings almost as much as they adore him. They are so precious with him!
In keeping with true Jackson fashion he gave us a bit of a scare this week when he woke up from a nap with a purple hue to his lips, fingers, and toes. His fingers and toes were also very cold to the touch. We somehow ended up with the volunteer ambulance in the driveway and Jackson inside getting his oxygen saturation levels checked. They checked out fine though, so we talked with our doctor at home and decided to just monitor him closely (he was acting perfectly normal). It was gone within a few hours, but we are still keeping a close eye. We continue to appreciate your prayers for Jackson. He is a very healthy boy overall, but still has a complex little body.
Mason was able to make contact recently with the doctor who delivered Jackson, and who prayed with Mason while Jackson was in cardiac arrest. It was such a precious conversation, and an obvious encouragement to him to hear how his prayers had helped us. Not to mention hearing how Jackson is thriving! He was a vital piece in the puzzle of God's loving plan for us. We are so grateful this doctor.
Since I'm a month behind on posting AND it was the holidays, you'll have to excuse all the pictures!
-Rachel for the Vanns
Thursday, December 3, 2015
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