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!
Wednesday, April 23, 2008
Friday, April 11, 2008
Enjoying Tummy Time!
It has been a while since we have posted an update, mainly because the last few weeks have been going pretty well. We are continuing to work on unpacking , which at this point seems to be a never ending job. We are also working on some small projects such as trim work and replacing the old electrical outlets.
Last Friday, Mason had his stomach wrap dilated to help with the gagging. The procedure went really well and took only about 45 minutes. About an hour and a half after the procedure he was acting like himself (despite having just undergone general anesthesia) and we were able to visit many of his girlfriends. We even got to visit with some of his ECMO nurses who we don't have a chance to see too often. I wished that they could have held Mason, but by that point he was getting pretty fussy and was heading for nap time. We also had the chance to meet and visit with some wonderful parents whose daughter Faith had CDH and was in the NICU. It was nice to be able to help provide support to such a wonderful family. Sadly, Faith lost her battle to CDH early the next morning. Our prayers are with both Faith and her family.
It was just last weekend when I was talking to Noah's Mom about how our boys disliked tummy time. This week they both started rolling from back to belly and also started pushing up! I think they must secretly call each other when we are not looking. Hopefully crawling will be right around the corner for both of them. Mason has also discovered a love for dancing. I downloaded some songs for him a couple of weeks ago and he absolutely loves them. He will recognize the song and start dancing. He will dance on his feet, sitting down and kneeling. Any music will do, including music from toys and occasional tv commercials.
Feeding continues to be our biggest hurdle. We have learned that Mason needs to be in complete control when it comes to his mouth. I don't blame him after all that he has been through. He is continuing to learn to self-feed. He is able to put the spoon in his mouth himself and has also learned to "dip" the spoon in the food. We saw his Occupation Therapist today and she is happy with his progress. He now seems comfortable with the pureed food texture, so she suggested moving on to some mashed soft table foods for him to taste and play with.
Travis has two more weeks before his March of Dimes walk on April 26th. We received so many generous donations, Travis increased his goal to $1,000! Thank you to all who have donated to such a wonderful cause! Next year, we will be creating a team in Mason's name so that others who have expressed interest can walk with us.
Last Friday, Mason had his stomach wrap dilated to help with the gagging. The procedure went really well and took only about 45 minutes. About an hour and a half after the procedure he was acting like himself (despite having just undergone general anesthesia) and we were able to visit many of his girlfriends. We even got to visit with some of his ECMO nurses who we don't have a chance to see too often. I wished that they could have held Mason, but by that point he was getting pretty fussy and was heading for nap time. We also had the chance to meet and visit with some wonderful parents whose daughter Faith had CDH and was in the NICU. It was nice to be able to help provide support to such a wonderful family. Sadly, Faith lost her battle to CDH early the next morning. Our prayers are with both Faith and her family.
It was just last weekend when I was talking to Noah's Mom about how our boys disliked tummy time. This week they both started rolling from back to belly and also started pushing up! I think they must secretly call each other when we are not looking. Hopefully crawling will be right around the corner for both of them. Mason has also discovered a love for dancing. I downloaded some songs for him a couple of weeks ago and he absolutely loves them. He will recognize the song and start dancing. He will dance on his feet, sitting down and kneeling. Any music will do, including music from toys and occasional tv commercials.
Feeding continues to be our biggest hurdle. We have learned that Mason needs to be in complete control when it comes to his mouth. I don't blame him after all that he has been through. He is continuing to learn to self-feed. He is able to put the spoon in his mouth himself and has also learned to "dip" the spoon in the food. We saw his Occupation Therapist today and she is happy with his progress. He now seems comfortable with the pureed food texture, so she suggested moving on to some mashed soft table foods for him to taste and play with.
Travis has two more weeks before his March of Dimes walk on April 26th. We received so many generous donations, Travis increased his goal to $1,000! Thank you to all who have donated to such a wonderful cause! Next year, we will be creating a team in Mason's name so that others who have expressed interest can walk with us.
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