Lots of News

We have had a really busy week so far. On Monday, Mason received his last RSV shot until November! We are happy not to take him in for monthly shots now! He was beginning to associate the Pediatrician's office with shots and would start to cry when I put him on the table. Unfortunately his gets a round of 12 month shots next month so we really won't get a break until June.

On Tuesday we went to visit his Physical Medicine doctor. She has been following him closely because he was on ECMO. Many of the kiddos on ECMO end up with some development and neurological issues. Mason is no exception as he had some small brain bleeds. At the last appointment, the doc mentioned that she thought that Mason had a mild case of Cerebral Palsy. The good news is that this time she thinks that he might be in the clear for now. She was very impressed with his physical progress. However, there is still a chance that we may see mild CP when he really starts to move with running, jumping, etc. She will continue to follow him closely every three months.

Today we went to visit the Pulmonologist. It was an exciting visit. They were so happy to see him gaining weight and progressing physically. His lungs sounded perfect, even though he didn't have his breathing treatment this morning. They discontinued his diuretics! We are still waiting for the new software to come in so that we can discontinue his oxygen. Hopefully we can do our last trial in a couple of weeks. They also discontinued one of his breathing treatment med's (he was taking two). We are also going to stop using the nebulizer and are going to use a new "big boy" inhaler with the lowest does possible of his other med! We are hoping that he does well with all of these big changes. We also got the go ahead to end our winter "lockdown". This means that Mason can go to public places and can also be around other kids if they are not sick. We still have to exercise extreme caution until he is about 2 years old. This means that when we go out we have to go at "off peak" times. No grocery shopping on Saturday or going out to dinner at 6pm, etc. When we are out, strangers are not allowed to touch him and we need to carry a bottle of Purel around with us. As always, we need to be very careful about being around cigarette smoke and people who smoke. Also when we go to a large family gathering, we need to limit the number of people who hold him, etc.

Mason will start attending a special playgroup at the beginning of May through the school system. It is a special playgroup for kiddos with special needs that have been receiving therapy through Early On. We also have the go ahead to attend Physical Therapy at the school instead of at home!