Care4Conway: 1st Grade!

Wednesday, August 21, 2013

1st Grade!

Look who photobombed this pic. Silly Karsten!

No more peter pan collar for my big girl this year. She's growing up so fast! PE shoes are a size 5.5 Women's!

Today is the first day of 1st Grade for our boy! Mookie is starting 3rd this year and is so thrilled to have the teacher she wanted and be in class with three of her best friends. Conway is happy that his best friend is in his class, but not very excited about the start of school because, "There's no rest time in first grade!" I told him I'd have him come down and explain to my 4 yr old class the benefits of it since none of them seem to want to rest :) I have met with his new teachers and nurse and they are all up to speed with his current health status.

We still have not gotten the results of the holter monitor and I have been so busy with the move and getting settled here that I have not even gotten his disposable cameras from Camp Rhythm developed yet! I am behind and the school year is just beginning. This is not a good sign! He loved camp again and even briefly made an appearance in a news story about it.

We are going to a meeting tonight to learn more about Cub Scouts and see if that is an activity that would interest Connie. I think it would be good for him since it is not necessarily athletic and will give him something to do besides watch TV/play Xbox. He is so hard to get up and get moving and it is hard to tell if it is just the way he is or if there is a reason for it. Unless you take him to a bowling alley or putt putt course/driving range, he doesn't want to get off the couch (except to jump on/off it and wrestle on it with Karsten). He is still taking piano lessons and seems to enjoy them. He says he wants to play tennis like Mookie, but I don't think he is physically ready yet. His coordination and strength are still pretty immature.

He continued with his occupational therapy this summer. His therapist doesn't travel this far east so they were going to assign a new therapist. We thought it might be time with the start of school to give him a little break and see how he adjusts to a new classroom and schedule before adding more to his plate. He has been napping most afternoons if we go anywhere in the car and is probably going to be tired after a full day of school.

And not to leave out Karsten, he started preschool last Thursday and likes it. he cried briefly the second day, but seems to adjust pretty easily to new situations.

Baby Frances is the happiest baby ever and is our joy. She is beginning to roll over and screech like a pterodactyl. We just can't get enough of her!

We just had some photos taken and this was the best we could get of everyone!

2 comments:

Anonymous said...: SOOOOO happy to see him looking all dapper and GQ!

Have a great school year and keep me posted! Stop by for a visit!

Toodles,
Nurse Caren; August 21, 2013 at 12:16 PM
Anonymous said...: What great news this is! I just love the pictures of everybody. You have so much to thank God for! Talk about being behind--I think is is practically a miracle that you have managed as well as you have. Moving is an all-encompassing task! Know that you all are in my prayers daily. With love, and wishing you many blessings, Sister Josephine; August 22, 2013 at 4:09 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.