Today Mason's page received a new look! We have been using the same format for over a year and decided it needed some freshening up. Look for some new items to be added soon. A live site feed was added today which shows the geographical location of the blog visitors (city, state). I saw it today on another CDH blog and thought it was a really neat idea. We will try it for a few days to see how it works. We are also going to get rid of the photo gallery link and will just try and use the blog to post our updated photos.
Mason has pretty much recovered from his cold. He still has a small post-cold cough but that seems to be disappearing more and more each day.
We did receive some good news from his pulmonologist last week. The oxygen trial software is in! Sometime in the next month, Mason will have a two night trial to come off of his oxygen at night. We are pretty confident it will be successful and will be thrilled to see all of the associated equipment leave our house.
We have some more good news regarding Mason's medications. He is no longer taking an iron supplement as his blood work looked good at his 12 month check-up. We are also instructed to try taking him off of his last reflux medication. The medication also aids in digestion so we are not sure if he will tolerate his bolus feeds without it. He has been off for two days and seems to be ok for now. For the next couple of weeks we will be watching him closely for an increase in gagging, etc. Mason is now down to one full-time medication! He is taking flo-vent for his chronic lung disease and he has an albuteral inhaler to take only if needed.
Tuesday, June 17, 2008
Saturday, June 7, 2008
On The Growth Chart!!!
We have some great news! As you can tell from the title above, Mason has made it onto the growth chart in all 3 areas (weight, height and head circumference) for the very first time! We were all super excited at his office visit. Two nurses weighed and measured him because they couldn't believe he grew so much since his last visit. Mason is now 19 pounds, putting him at the 4th percentile for weight and the 10th percentile if you adjust for prematurity. He is also 29 inches long! He has grown almost a foot since birth!
The office visit went pretty well. Unfortunately Mason had to get some shots which upset him, after a few moments of crying he started "yelling" at the nurses in baby babble, still with tears coming down his cheeks. I felt bad that he was so upset, but he was sooo cute at the same time that I had to smile! The nurses thought it was pretty cute too!
Unfortunately Mason has caught a cold this past week. He has been a little stuffed up, but has been handling it well. He has only required a couple of extra breathing treatments and his oxygen sat's are still 97 -100%. He has now developed a bit of a cough due to the stuffiness breaking up. Hopefully in a few days he will feel much better.
Stayed tuned for some pictures of Mason trying to crawl and standing.
The office visit went pretty well. Unfortunately Mason had to get some shots which upset him, after a few moments of crying he started "yelling" at the nurses in baby babble, still with tears coming down his cheeks. I felt bad that he was so upset, but he was sooo cute at the same time that I had to smile! The nurses thought it was pretty cute too!
Unfortunately Mason has caught a cold this past week. He has been a little stuffed up, but has been handling it well. He has only required a couple of extra breathing treatments and his oxygen sat's are still 97 -100%. He has now developed a bit of a cough due to the stuffiness breaking up. Hopefully in a few days he will feel much better.
Stayed tuned for some pictures of Mason trying to crawl and standing.
It's hard to see it in the picture, but there is water, water everywhere!
Tuesday, June 3, 2008
Happy Birthday Mason!
I can't believe our little boy is 1! My how time flies!
Last weekend was a whirlwind weekend with Mason's first birthday and our 6th wedding anniversary on the same day! Travis and I managed to get out for dinner the week before so that we could focus the whole day on Mason. We had family over for dinner, gifts and cake and ice cream. As you can imagine we all totally spoiled Mason and he got lots of new big boy toys. His favorites include a plastic puppy rocking horse (or I guess I should call it a rocking dog). He also loves the alphabet wheel, tool set and gears.
Our Birthday Boy at the start of all the action
Rocking on his new doggie!
Opening gifts was fun!
Birthday cake mess!
Another view, here you can see Buster was also caught on camera!
After the post-birthday cake bath Everything else is going really well. Mason is almost ready to crawl. He can now get himself into the crawling position from lying down and then he will spend some time rocking back and forth and trying to figure out how he can get to his toy without falling. His upper body strength is now enough for him to fully support himself. Mason is also getting great at standing against furniture without any help from us for longer amounts of time. It looks like he might start cruising the furniture soon. Our physical therapist is extremely happy and says that Mason is getting close to being "age appropriate" for his adjusted age which is about 10 and 1/2 months (since he was born 7 weeks early). This is great news, but the one downside is that he may not qualify for Early On therapy and support after this school year.
Sunday, May 18, 2008
May Update
Sorry it has been so long since we last posted. Now that the weather is nice, we have been busy going for walks and working out in our yard. The house we bought was vacant for over a year and the yard was showing some major signs of neglect! We have been trying to whip it into shape over the past couple of weeks.
Things have been going pretty well since our last post. We have been able to condense Mason's feeds down to 40 minutes. We are thinking that we may be able to condense them even more sometime next week. Mason has decided that he is done with pureed baby foods and refuses to eat them anymore. He has been working with them for 6 months now and he has decided it is time to move on to something more exciting. We are now working with puffs and wagon wheels and items with more texture. He is still in the playing and getting comfortable phase. Right now his favorite thing to do is chuck them off the highchair so that the dog eats them. We are just happy that he is getting comfortable touching them! Buster is now seeing the advantages of having a baby around :)
Our little chatterbox is starting to build a vocabulary! He can now say mama, dada, and boo-boo (our pet name for Buser). He has also added in barking and growling, proof that kiddos really do absorb everything around them! He enjoys waving bye-bye and giving high fives.
Mason's PT is also going pretty well. He can stand for brief periods now supporting himself on a toy or the couch. He is also starting to walk a little when his hands are held. We have been trying to get a video of this, but he gets so excited when he sees the camera he starts bunny hopping instead! Mason is also getting close to being able to crawl. He is able to go from sitting to all fours with just a little help and will initiate crawling to an object if we provide him with some support under his chest. He has the arm motion down and is starting to learn what to do with his legs. He has also learned how to pull up to his knees and then standing from the crawling position, all with just some support under his chest. He seems to be learning everything all at once so we are trying to make sure he gets some practice with everything each day. He is very determined to move, so we are sure it won't be long before he is completely mobile!
Last but not least, Mason will turn 1 on Sunday! We can't believe it is only a week away. I took some time to revist some of our first posts and he has come so far! I am sure Sunday will be a very emotional time for us. We would have loved to have a giant party to celebrate with everyone, however we decided to play it safe (as his lungs are still growing) and just keep the party to immediate family.
Below are some recent pictures and a short video of Mason playing with the light on our ceiling fan.
Going for a walk
Story time (about Michigan of course!)
First shopping trip in a cart!
Thursday, May 1, 2008
Successful Walk!
First, we wanted to thank everyone who donated to the March for Babies walk. The initial goal was 500 dollars, but Travis was able to triple that and raise $1,500 thanks to all of you! Saturday was pretty windy and chilly, but Travis battled the elements and walked in honor of Mason. Mason and I joined him at the end and were very proud! Next year, we are hoping to create a CDH team and our goal is to have 50 people join us in the walk. If you are interested, please let us know and we will add you to an e-mail list so that you can be notified of date, time and location of the walk next year. We hope that you will be willing to join us in such a great cause! I added a picture of Mason hugging his Dad after the walk.
So far Mason has adapted well to the changes made by the Pulmonary team. He started using his new big boy inhaler tonight. It just takes two puffs, so much easier than a 20 minute nebulizer treatment! We are so happy that another piece of medical equipment can now leave our home.
Tuesday we started going to the Early On playgroup. Mason was pretty shocked to see all of the kids in a circle singing and clapping, but he held it together and had a great time. There is also an Occupation Therapist there along with his usual Physical Therapist. The kids play, sing and have snack time. We are so excited because next week Riley and his Mom will be at playgroup. Riley was born with CDH as well and had a very similar hospital stay and recovery. We are so lucky to have someone who has gone through the same experience as us living so close!
I also included a couple of pictures from Mason's OT appointment at UofM Wednesday. The first one is during therapy and the second one is after therapy and a visit with his girlfriends.
Wednesday, April 23, 2008
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!
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!
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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