For all of you who have stood with us through your love and prayers, I thought I might post a general update about our little friend...since it's been SO long! Overall, Jackson is thriving. God has given him three and a half years of life, and every day is a gift. He had a cardiology appointment in St. Louis a couple weeks back, and his little heart is holding strong. The pulmonary artery (one of the two switched at birth) continues to have narrowing, but is not severe enough to require intervention at this point. He also has a "leaky" pulmonary valve, so his doctor doesn't want to stretch the artery prematurely and cause further "leaking." He continues to take aspirin every day to help prevent clots in the stented area of his heart. His pacemaker is still working well, and we continue our monthly at-home pacemaker checks. J is a pro at these, and if he has a tummy ache asks me to "check his heart." Life is confusing for a little buddy! His pacemaker will have to be replaced probably in about 3 years when the battery begins to get low. Because of his previous pacemaker infection, and their inability to follow protocol in replacing the entire pacemaker (for various physical reasons), Jackson continues on preventative antibiotics twice daily. These have done a real number on his stomach, and his little GI system has been pretty miserable the last few months. I had tried unsuccessfully in the past to get him to take probiotic gummies, but recently found some packets that dissolve in liquid. These have helped a lot, but we look forward to when the new pacemaker can go in and the antibiotics can stop. Jackson wore custom made orthotics in his shoes for close to two years (a huge pain and nightmare...extremely difficult to get tweaked just so--to support his feet and ankles in proper alignment without causing blisters on his big toes), then a second opinion from an orthopedic surgeon caused us to ditch the orthotics last October. However, his foot alignment is very off, he doesn't seem to be developing arches, and a new recommendation from a new neurologist was to retry...so those are ordered and on their way, and we shall see how it goes. We pray they can be hugely successful and just what his little feet need.
But the biggest, most difficult obstacles in Jackson's life have related to behaviors. Almost as soon as he began to really be alert and interactive we noticed some behaviors that seemed not quite right. Hurting himself when frustrated, inability to de-escalate when upset even after a prolonged time, extreme agitation when small things go wrong, extremely picky eating, inability to tolerate certain sounds or places, inability to sleep through the night....etc, etc, etc We have asked other parents, asked our pediatrician, asked his developmental doctor, googled, prayed, and cried, and cried, and struggled, and prayed some more. By God's grace it seems we are finally where we need to be. At Jackson's last cardiology appointment I vaguely told our doctor about some of these symptoms, when she asked "how is he doing otherwise?" She mentioned a cardiac neurodevelopmental team at Children's Hospital, and asked if we would be interested. YES. I think I counted seven healthcare professionals who came in the room at various times when we went for his appointment last week. They were all caring, compassionate, and competent. Somehow---how???--we met with a neurologist for the FIRST time since Jackson's birth/hospitalization. He listened to my descriptions and explained that Jackson's cerebellum had significant damage at birth, and that behaviors are very closely tied in with the cerebellum. He said these behaviors are not all surprising and even to be expected in light of this. I suppose to a parent who has never thought in these terms that would be very alarming, but if I hadn't had three kids on my lap I think I could've hugged him. To have someone else--a doctor--affirm that what you have thought and felt is right on track... To know you haven't just been wimping out (all kids are hard in one way or another, right?). To finally feel heard. It's indescribable. He feels that diagnoses would benefit Jackson at this point in time. This would give us, his teachers at preschool, his other doctors all the ability to move forward in getting him the help he needs. So, God-willing, in the next weeks Jackson will have in depth testing with two different doctors as well as with an occupational therapist (to specifically look for sensory issues). We're not sure what they'll find, but appreciate your prayers that God would give them wisdom. We know diagnoses doesn't equal fact--behaviors, in particular, can fluctuate and doctors are only human. But we wholeheartedly want any and all help we can get for our buddy, and feel confident that God will give so much grace for him to lead a very full and happy life. I feel extremely humbled by the resources God has put in our lives. To even be able to have him be seen at Children's. It's just pure grace.
So in closing...Jackson IS thriving. We love him so much it makes our hearts hurt. He is going to preschool four mornings a week, learning tons of new words and phrases, and as Bethan says, "Getting way too grown up!" But if you think of us, would pray for us? We want to be good, God-honoring parents to our children. We want to give them the best chances at success in life, and strong foundations for the future. These have been extremely trying days. Long and lonely in many ways--simply by nature of the difficulties Jackson faces. But God. God made him exactly as he is, spared his life in a miraculous way, and spared him from "severe cerebral palsy." Because of who He is we are full of hope for the future.
THANK YOU for loving us so well,
Rachel for the Vanns
(After Jackson's appointments last week, we headed to the zoo. Another way Jackson has been blessed is in having the sweetest and most patient older siblings. What would I do without these two??)
