Current News

Please pray for us. I just got a call from Evan's DME (durable medical equipment) company. This is the company that provides us with Evan's home ventilator, oxygen, and all of his supplies. The lady told me that they were having trouble getting our BC/BS insurance company to pay for Evan's equipment and supplies, after they had already agreed to do so. BC/BS gave our DME company a pre-authorization code, and ensured them that all of the equipment and supplies would be taken care of. Well, now they don't want to pay. (I'm not sure why they are just now telling us this after Evan has been home for 4 months, but whatever.) So, please pray for us during this trying time, that we will get all of this mess straightened out.

Also, Evan has a cardiology appointment in Birmingham next Tuesday, September 4th. Dr. Colvin will do an echo. to check to see if Evan's ASD has closed spontaneously. If not, Evan may have to have the ASD surgically closed. Please pray for a good report at this doctor appointment and for safe travel to and from Birmingham.

Thanks in advance for the prayers!

-- Tori

Well, we just got home from Evan's doctors' appointments in Birmingham. The appointment with his pulmonologist yesterday went well. He didn't make any changes to Evan's ventilator or oxygen settings this time. I told him how Evan's O2 sats. had been lower at night recently on 1/2 liter, and how he had been more congested, especially in the mornings. We are going to start him on Zyrtec daily, and leave him on 1 liter of oxygen at night, and 1/2 liter during the day. Evan had grown 1 1/2 inches longer since his last appointment in April!!:) His pulmonologist wants to see him again in 3 months, and said at that time, they would probably make some ventilator changes to start to wean him! So, all of that sounded good. The home ventilator team were all encouraged by how good Evan looked!

Today, we saw Evan's orthopedic doctor. They took some x-rays of Evan's spine, and said the kyphosis (which is an outward curve in the spine) was pretty significant and would probably need bracing, and possibly surgery down the road. We aren't starting with the brace yet, because he wanted to wait until the next appointment and take another x-ray. But, he said that he felt pretty certain that he would need a brace. The brace will not make the kyphosis go away, but may help prevent it from getting worse. We also aren't supposed to let him sit without good back support, since he can't sit on his own yet. He also took a look at Evan's hips and legs, and said that they looked good at this point, he doesn't have bowing in the legs, which is another common problem with achondroplasia. He said he may develop bowed legs once he starts walking, but at this point, he does not have them. So, that was good news. We go back to see the orthopedic doctor in 3 months too.

Evan did well on the ride to and from Birmingham. Today, he got a little restless waiting to see the doctor, but then he entertained the doctor and nurses with his new trick that his daddy taught him, 'showing his muscles'! It's too cute!

We will go back to Birmingham in the next couple of months to see the cardiologist. Thanks for all the prayers... please continue to keep Evan in your prayers. Hopefully this Zyrtec will do the trick for all the congestion. I'll try to post again soon.