Care4Conway: Conway Can. . .

Wednesday, December 12, 2007

Conway Can. . .

I got to thinking tonight about how easy it is to focus on all that is wrong with Connie, what Connie can't do, doesn't do yet but should, won't do or shouldn't do. So that got me thinking about what all he can do. Here are just a few things that come to mind:

Smile, laugh, melt your heart by cocking his head to the side and rolling his eyes up at you, splash his sister in the bathtub, drop his cookie on purpose to watch mom and dad repeatedly pick it back up for him, find the trunk (by himself) on his "blue bunny elephant" lovey and chew on it until he falls to sleep on his own, find a way to roll completely off the blanket he was laying on before throwing up, show his affection for toys, pets and people by banging on them, chew on his toes, chew on his upper lip making this cute, underbite look on his face, become completely enamored by music on the Today Show's Concert Series, grab your nose/face/beard/glasses with gusto, mimic a fake laugh, wait patiently for feeding/changing/cleaning while Mommy takes MK to the bathroom all day long for potty training, make getting up in the middle of the night to clean up puke a rewarding experience, reach for us when he wants to be held, rub the top of his head, cover his face with cloth diapers and blankets when sleeping (just like Daddy), get excited when he sees Sissy or when visitors/therapists come over, reach out to try to pet the dog, knock ornaments off the tree with his feet, talk/sing himself to sleep, mimic facial movements while watching us eat (just as a cruel joke--he's leading us on!), recognize extended family members, poke you in the eye with his thumb and show no remorse, calm down (some call it "recover quickly") after getting upset or sick, watch you when you aren't looking, intensely study the tag on a blanket, doesn't get scared when you place a dancing, singing FrankenPig on his chest, help put his arms through the sleeve of a shirt now, bite your finger hard enough until you scream in pain, bang on the back of his other hand when he gets bored and can't reach a toy, kick the wipes container off the changing table, give cues as to when he's going to be sick so that we can prepare, thus having an easier clean-up. . .

Well, that's a start at least. Greg and I hope that this list helps you to see a little glimpse into his personality and how much joy he has brought to our home and family.

5 comments:

Anonymous said...: Erin,
Thanks for the list of all that Connie can do, it's certainly uplifting. Even without a sick child it's so easy to get caught up in life that we miss out on the "little things". Heck, I do it everyday. I've been pushing for Claire to do this or say that and in the mist of it, I've dismissed the fact that she's figured out how to match the colors of her puzzle or how the phone is suppose to be held to her ear. So I think it's great that you're able to take a step back, look past all the vomitting and things he struggles with, to see the miracle God has placed in your hands. It's awesome!

I miss being closer to you, to share in the experience of Connie being your miracle. We'll be staying here for Christmas and mom's coming up! So, my plan is to make a trip your way sometime early this spring b/c I'd love to spend some time with you and the kids and get to meet Connie in person. I'll keep you posted on the plans.

Thanks again for helping me to see past the struggles to the blessings we do have, not only in your life, but what I focus on in my life too. You're soo good at helping me to see the "bigger picture"! I hope you have a fantastic day, I can't believe it's the 13th already, Christmas will be here before we know it.

Love, Caryn; December 13, 2007 at 7:40 AM
Anonymous said...: These are cute little things he does. How far he has come since the beginning of this ordeal. It is easy to loose yourself in the struggle to move to the next level. And to regain lost ground. A couple of years from now, you likely won't remember just how hard it has been until you take time to go back and read these journals. It's hard to remember "God's time, not our time". God bless you all. You are still in my prayers. Love, the SC Beckemeiers.; December 13, 2007 at 7:49 AM
Anonymous said...: Dear Erin, this is wonderful. I love to picture Connie doing all this. He is full of life and joy. What a blessing! You are just wonderful in the way you care for him and for MK. I know that God is holding you all in his hands. I love the new pictures, too. May all good graces be yours in this Christmas tide. Love, Sister Josephine; December 13, 2007 at 11:11 AM
Anonymous said...: You never fail to touch my heart or bring tears to my eyes. Thank you for reminding me of all the blessings that come amist the darkness of this journey you have enbarked on. Your spirit & gracefulness amaze me. I am honored to know you & be able to strenghten my relationship God through praying for you & your family. The power of prayer is a wonderful thing and as always I say YEAH Connie!!!!!!!!; December 13, 2007 at 4:02 PM
Shari said...: Erin:

I know what you mean when you say you get caught up in what a sick child 'can't' do. Oh, I hear you, sweetie. This post was absolutely beautiful. It brought tears to my eyes. I have been in your shoes and boy I wish I would have looked at it like you are now. You are precious!

Keep taking of those sweet kids! They sure are blessings, aren't they?

Loving you loads,

Shari; December 13, 2007 at 5:03 PM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.