Challenging times

Elijah has been home for two weeks already!! For some reason it seems longer than that. Things have been going okay for the most part. It seems like we have spent most of our time feeding him and juggling multiple appointments. We are definately learning a lot about our little man, especially how he likes to get up at 3am. He has been really fussy lately due to being constipated. They think that maybe his iron supplements may be contributing factor, also that children with chromosome disorders are at a higher risk of having constipation. We have been giving him suppositories to help ease some of the straining that he has been doing. When he strains himself he pushes out his stomach and it winds up irritating the area around his MIC-key button and that makes him really uncomfortable. His feedings are still taking us about an hour or more. They keep increasing his intake amount and we have to watch out how fast we give it to him otherwise he will spit up. Right now I think we are most frusturated with having to carefully move around his oxygen hose and his apnea monitor cord. We cannot wait until we do not have to have those anymore.

We had a follow up appointment with Elijah's cardiologist today. He is going to have to stay on the oxygen and the apnea monitor for a while. He still has high pulmonary hypertension (high blood pressure) in his heart and they cannot figure out why and need more sophisticated equipment. We are going to have to take a trip to Children's Hospital in Milwaukee and have a heart catheter done and depending on the results he may get treated for it right away.


We are trying to get into a routine as quick as possible since my maternity leave ends and I have to go back to work on the 20th, which makes me so sad :( But, Steve is going to play Mr. Mom for a while until he finds employment. When that happens we are thinking of putting him in daycare, but need to find one that handles children with special needs. We will keep up all updated as things move along with Elijah.



Thanks again for all of your support and kind words!!! Oh....if you want to stop by and see Elijah, don't hesitate to give us a call.