It's Been a Long Time... I Know

I know that it has been a long time since our last post. I will try to catch you up as quickly as possible.

In July: Demetri took his first trip back to the hospital via ambulance. He refluxed in the car with Christopher and stopped breathing. It was a terrible, traumatic event. But after less than 24 hours, Demetri was as good as new and we got to take him home. Eleni remembers getting to make pizza with the firemen in her kitchen. She now likes to alert us the Demetri is "vomiting" and send us running to find him sitting in his seat sleeping!

We knew it was a possibility and it was confirmed by genetic testing that Demetri has Cornelia de Lange syndrome. It is characterized by small stature, GI problems, heart problems, develeopment delays, etc. It is caused by a random mutation in his DNA that stops one of his proteins from being formed correctly, so it cannot function properly.

At the end of July we took a fast trip (and I mean fast... we planned it and left within 48 hours) to Disney World. We left our worries in Kansas City and had a great time. I don't think that Demetri even noticed anything different and Eleni loved it! She loves everything princess now. It was nice to be away from reality and not have to answer the phone for 5 days. Except for that one call from our pediatrician, and she was only upset that we did not bring her along as our private physician for the trip... she's great! Then Christopher had to start school as soon as we got back.

In August: We were finally approved for a nurse to come to the house to take care of Demetri while we at work/school. It is a difficult adjustment to leave someone at our house to take care of Demetri, but is working out well. By the end of the month, with the encouragement of the administration at the medical school, Christopher decided to take a leave of absence for a year. It was a difficult decision for him to make, but we now know it was the right one. He will be spending his time off trying to study old material to stay current for boards and shadowing doctors soon (he missed the experience over the summer when Demetri was in the hospital). Demetri had so many doctor's appointments I don't know where to begin (I'm greatful Christopher could start helping me get to them). He started going to a physical therapist for nerve tracking (sounds kind of voodoo I know, but works) to help release his tight nerves which then helps to loosen his muscles. He loved it. He would just lay there and relax.

In September: Demetri is still having trouble with reflux. We have seen the surgeon several times and he is wanting to redo the fundoplication that he had in May (surgery to pull the stomach up around the esophagus and tighten it to stop the reflux). We are about to give in since he has his hernia surgery already scheduled for October, they can do them at the same time. He had another appointment with the Cardiologist. His aortic stenosis (narrowing of one of the valves in his heart so it will not open properly -- thanks to Christopher) is mild and unchanged since June, so we don't have to go back for 6 months. The doctor cannot rule out a coarctation of his aorta (a narrowing of the main artery that supplies the body with blood) because they cannot see it very well but doesn't think it is significant... we'll check in 6 months. Demetri had an MRI of his sacrum to look at the end of his spinal cord. They were looking for a tethered cord (meaning the spinal cord is longer than normal, thickened and can attached to the spinal column. This causes problems as you grow because the spinal cord gets stretched). While we were waiting for the results, Demetri had some more bad reflux and probably aspirated into his lungs, this confirmed our decision to proceed with the fundoplication surgery. We happened to be at the pediatrician's office later that day and when they checked his oxygen saturations they were low. So we spent 4 days in the hospital trying to convince the Hospitalists that we could care for him at home on oxygen. Thanks to a call from our pediatrician we got to go home! But while we were there he had a VCUG (test to see if any urine goes back up toward the kidneys when he urinates) and the MRI results showed a tethered cord. The Neurologists did not agree when they looked at the test and as long as another urinary test goes ok! So we took him home and he spent the next month on oxygen 24 hours a day.

Eleni officially started preschool. She doesn't like the thought of going, but has a great time once she gets there. She also turned 3 years old in a princess celebration complete with 2 costume changes!! She had a great time and it was great to see all of our family and friends together at our house. She started swimming lessons and Coach Ann quickly sent her to the deep water class. I think she is a natural.

In October: Demetri had his surgery to tighen the fundoplication, repair his inguinal hernias, and complete his circumcision. Poor guy, he had the works that day. To make it even more exciting, he spiked a fever and had a febrile seizure while I was holding him. That called for another Neurology consult and EEG, which was normal. Poor little guy, he is such a trooper. Eleni demanded a visit to the hospital and held him for about 20 minutes! She has since then told everyone that meets Demetri that he had surgery. It's kind of cute. So far his reflux is much improved (knock on wood)!! He seems to be much more comfortable and relaxed. He has never complained and been a relatively happy baby, but he is just so much better now. We have noticed that the only times he does reflux is when he is straining to pass gas or stool. So we went to another GI doctor that specializes in gastric emptying (I forgot to mention that we insisted on a gastric emptying study while he was in the hospital to see if it was delayed and compounding the reflux problems... and it was delayed). He put Demetri on a medication to relax the muscles of his GI tract to help with stomach filling when he eats and his bowels so he can stool easier. It seems to have helped.

He is continuing with his physical therapy at home and has made a lot of progress. He has a great therapist and Demetri loves her. He just smiles at her as she is working with him. He is more flexible now, has much better head control, and is reaching for toys. He is tracking objects well while holding his head up (that was the goal for the month!).

Demetri also had a vision screening. He is near sighted, but doesn't need glasses now. We were sent to the Vision Center for further evaluation. They played with him to see what kind of toys he was interested in and how best to stimulate him. They recommended having a vision teacher and one of their occupational therapists come to the house weekly to work with him. He also had a follow up hearing screen. He does have some hearing loss in both ears and they are probably going to recommend hearing aids after they do further screenings.

Demetri dressed up as a giraffe for his first Halloween, a little ironic for our little 11 pounder I guess. But he made an awfully cute giraffe. He escorted Princess Belle (aka princess Eleni) and princess Cinderella (our neighbor Peyton) trick or treating before falling asleep at the neighbor's house while Eleni and Peyton ate their candy.

In November: Demetri was baptized last weekend. It was a wonderful ceremony. He did a great job, not a tear was shed. I think he liked the "bath". Demetri's godparents, Christopher and Jo, are wonderful people and very loving with Demetri. He falls asleep every week during church with Jo holding him. Now we are finally able to cut the crazy hair. He looks even more like a miniature Christopher with his short spiked hair.

Demetri now weighs over 11 pounds and is about 23 inches long. He seems to be growing so fast. We have reduced his feedings to 24 calorie breast milk and are going up on the volume he eats. We will see how well he has grown on it in another week. He seems to be tolerating the larger volumes and his reflux is greatly improved. He still sleeps with his oxygen on at night and his apnea monitor. Every once in a while it alarms and it's a race to see if I get to his bed first or Christopher.

His new goal for PT is to sit on his own and to roll over. OT has started coming and working on oral motor things again. Hopefully we can get him interested in eating again. There is also a clinical trial going on in my unit for oral stimulation and I think we are going to start sneaking him in to try it. We have a wonderful nurse, Stephany, that has been taking excellent care of Demetri since September. She is fitting into our family well, even Zoe is starting to warm up to her.

Socially, Demetri is becoming more interactive. He likes to hold fingers and has the sweetest smile that lights up his whole face. He loves visiting with the neighbors. He has befriended "Mr. Gary" and they love just looking at each other and talking, then Demetri falls fast asleep while he holds him. It's too bad the weather is getting colder and we won't see them as much this winter.

This is it in a nut shell... sort of. I will post pics soon.