Care4Conway: Re-eval and prayer request

Friday, March 27, 2009

Re-eval and prayer request

We had Connie's re-eval yesterday to determine what therapy needs exist for the next six months. Carey (coordinator), Deb (PT) and Chris (SLP) all attended. Of course they fussed over him because he's so darn cute. He graced them all with his piano playing abilities and showed off his new "Melmo" (Elmo) books he had just gotten from Barnes and Noble earlier in the day.

PT: Deb is impressed with his ability to walk down the slope of the front yard and to go from grass to concrete surfaces and down different levels and small steps. She is still concerned about his ankle strength and wants to continue getting better at tip-toeing. He is going to get new orthotics but they will be the same kind (Sure Steps) as the one's he's in now. I'm so bummed because I desperately want him to wear those cute navy blue stride rite fisherman sandals this summer, but I guess we'll wait one more year :( He'll look darling in his new nike kicks though. We're decreasing his PT services to one hour every other month! We'll have to get our Ms. Deb fix at church, I guess!
Speech: Chris says Connie is making progress every week. He is still leaving off word endings and initial consonants so his intelligibility is rather poor. We are trying to use the phrase, "Use your words" with him to get him to stop relying on signs and gestures to get his point across. It will be hard for us to do this because we just know what he means and he doesn't have to use speech. It will be good for him to be around new people and kids when he starts "school" next week and maybe he'll pick up some new words and good speech habits. She said since he is so smart we are going to have to sabotage him and "ruffle his feathers" a bit to get him to verbalize more. She is going to try to see him a few extra times at school and try to see if a new environment is motivating for him. She'll keep coming to the house 1X/week. We asked about increasing, since the ped. recommended it, but since he's showing improvement, it wouldn't be covered at this point.

The team will reconvene in late Aug. or early Sep. for the next re-eval and to start planning the transition to services from the local school district. Then they will have us sign releases to communicate with the early childhood people in Fort Zumwalt and then just before he turns three FZ will conduct testing to see what he qualifies for. He may qualify for speech still, which could mean that he would be attending United Services for his therapy and receiving it during preschool setting. It may mean that he will go there for preschool full-time, but we're not sure yet what his needs will be at that time. If that were the case, he would start right when he turns three rather than waiting until the following school year, the '10-'11 school year like we would have done if we put him in Mary Kathleen's preschool. That's still some time away, but it really hit me when they brought it up yesterday. I guess it will be here before we know it.

Now that you've gotten the latest on WonderBoy, I want to ask that you pray for a fellow L-TGA kiddo who will be undergoing his big double switch operation like Connie had next Thursday. He lives in London, UK and his name is Oscar. He is a lot older than Connie was when he had it done (he's three now) and his mom is worried about the emotional trauma involved. He's saying he doesn't want to have it done and asking why it has to be done. Please pray that God gives his mom Laura the right answers for her little boy and that He gives her peace to know she's made the right decision. We know all too well the feeling of taking a "healthy" boy in for surgery and the questioning and doubt that looms with such an action. I'll post updates as soon as I hear how he's doing.

1 comment:

H. James said...: Wow, your post could have come from our life here! Bailey has the Sure-step orthotics as well. They have really helped her with walking. She ALSO needs to work on tip-toe walking. She can't jump, either. AND Bailey started preschool right when she turned 3, not waiting until the fall when she would have started. I was TOTALLY freaking out! She is my first, however, so maybe you'll be more prepared than I was, since you've already sent one of your "babies" off to school.
Thanks for the great update. We are, of course, following Oscar's progress as well.; March 27, 2009 at 2:57 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.