I hope everyone had a wonderful Thanksgiving Holiday. Travis and I feel so fortunate and are so very thankful for many reasons. Going through what we have in the past couple of years have made us realize what is really important in life. We are so thankful for Mason and his health. We are also thankful we have such a supportive network of friends and family. We have formed some wonderful friendships along the way.
This week, we took a trip up to Northern Michigan to visit Grandma and Grandpa Ellinger for Thanksgiving. We had a great time and Mason seemed to really enjoy the trip! They even had snow for us to play in!
Mason has really been cruising the furniture moving from object to object without a second thought. He can let go momentarily and balance for a few seconds. He has also been trying to repeat what we say. He even learned to say wow this weekend. He is also saying "turtle", although I am not sure most people would understand what he is saying :)
Here is a montage of pictures from this week. Enjoy!
Friday, November 28, 2008
Sunday, November 23, 2008
New Feeding Plan
We are trying a new feeding plan with Mason. As many of you know, we seem to be constantly revising and tweaking his feeding plan in hopes that his oral intake will increase. Our newest big revisions have come from the CDH clinic and our latest meeting with his Occupational Therapist.
I haven't posted much about this lately because I was afraid I would jinx Mason's progress. Mason has started drinking water, a really big step for him. Each day is different and sometimes he will take only a little, while other days he will drink 2 1/2 ounces. He has also overcome a HUGE hurdle recently. Until recently, Mason would gag and retch if he managed to get any crumbs or food into his mouth. Even pureed food would make him gag. Now Mason is willing to put food into his mouth and take small licks or bites of pudding. He has started to bite into crackers and goldfish and will even swallow the small crumbs left over, while removing the larger pieces from his mouth. Mason still has fear when larger pieces make it into his mouth and he will rake them out. We feel he is getting close to wanting to chew the larger pieces, and overcome this next big hurdle.
Now for the newest feeding plan. I must warn you that this goes into detail and probably won't mean very much to those who don't have tube fed kiddos...
Mason gets 30 ounces of 30 calorie formula per day, or 900cc's. His daytime feeding plan is split into boluses (or large bursts formula). He gets 4 boluses a day with 6 ounces (180cc's) and right now is taking them at a rate of 290 cc's/hr. Each bolus takes about 45 minutes to deliver. At night Mason gets 170cc's of formula delivered at a continuous rate of 45cc's/hr. His continuous feeds take less than 3 and 1/2 hours (since our pump is a little fast at lower feed rates).
This is a pretty big jump from where we were at before. Just two weeks ago, Mason was only getting 5 ounces of formula at a rate of 250cc's/hr. He received 250 cc's of formula at night for 5 hours (at the same 45cc/hr rate).
Our goal this week is to slowly increase the rate so that his bolus takes closer to 30 minutes. Once we get closer to 30 minutes, our next goal is to get him to take 7 ounces of formula (or 210 cc's). Every time we increase his bolus amount, we are removing a portion of his continuous night feed. The reason for this is that the night feeds pretty much zap any hunger he may have during the day.
We still have yet to determine if Mason is having any hunger cycles. We try and space out his boluses by 3 and 1/2 to 4 hours to allow him some time to get hungry. Before each bolus, I offer a sippy and snacks for him to take in orally. He also actively participates in lunch with me and dinner with Travis and I. At these times, we aim to give him experience with the food that we are eating, along with his usual crackers. This helps him to overcome his texture aversion.
Another goal just given to us by his OT is to try and get Mason to drink a little bit of whole milk. He is very willing to take sips of what we are drinking, such as water, gatorade, or milk. We hope to have him start taking whole milk in some measurable quantity. Once he can consume a few ounces per day, our OT will propose a 2-3 week trial of eliminating his dinnertime bolus. The goal here is to allow Mason to develop the connection between hunger and orally satisfying that hunger. Since Mason has been tube fed pretty much his whole life, he was never able to develop the connection that tells him to eat if he is hungry. As long as he is 100% tube fed, his tummy magically fills with formula when he is hungry. The hardest part will be convincing Mason's team of docs to buy into this 2-3 week trial, especially during the winter months. Since he is in the 80% for weight, I feel we might have a good shot at it. The milk he drinks will offset the calories lost by eliminating the bolus (and hopefully help convince his docs to allow us to try).
The biggest challenge for us when it comes to Mason's feeding seems to be his internal anatomy. Normally, we would try and have Mason receive a bolus while playing with food so that he can make the connection that food satifies hunger. However, Mason has some interesting anatomy and cannot tolerate a bolus while sitting upright. Somehow, his stomach does not empty well while his is sitting. He has his docs stumped. We give all boluses in a reclined position and he handles them really well. When he gets his bolus, we try and have him suck a pacifier (although his drive to do this is naturally fading with age) or give him a cracker and sippy cup.
I will post another feeding update in a couple of weeks.
I haven't posted much about this lately because I was afraid I would jinx Mason's progress. Mason has started drinking water, a really big step for him. Each day is different and sometimes he will take only a little, while other days he will drink 2 1/2 ounces. He has also overcome a HUGE hurdle recently. Until recently, Mason would gag and retch if he managed to get any crumbs or food into his mouth. Even pureed food would make him gag. Now Mason is willing to put food into his mouth and take small licks or bites of pudding. He has started to bite into crackers and goldfish and will even swallow the small crumbs left over, while removing the larger pieces from his mouth. Mason still has fear when larger pieces make it into his mouth and he will rake them out. We feel he is getting close to wanting to chew the larger pieces, and overcome this next big hurdle.
Now for the newest feeding plan. I must warn you that this goes into detail and probably won't mean very much to those who don't have tube fed kiddos...
Mason gets 30 ounces of 30 calorie formula per day, or 900cc's. His daytime feeding plan is split into boluses (or large bursts formula). He gets 4 boluses a day with 6 ounces (180cc's) and right now is taking them at a rate of 290 cc's/hr. Each bolus takes about 45 minutes to deliver. At night Mason gets 170cc's of formula delivered at a continuous rate of 45cc's/hr. His continuous feeds take less than 3 and 1/2 hours (since our pump is a little fast at lower feed rates).
This is a pretty big jump from where we were at before. Just two weeks ago, Mason was only getting 5 ounces of formula at a rate of 250cc's/hr. He received 250 cc's of formula at night for 5 hours (at the same 45cc/hr rate).
Our goal this week is to slowly increase the rate so that his bolus takes closer to 30 minutes. Once we get closer to 30 minutes, our next goal is to get him to take 7 ounces of formula (or 210 cc's). Every time we increase his bolus amount, we are removing a portion of his continuous night feed. The reason for this is that the night feeds pretty much zap any hunger he may have during the day.
We still have yet to determine if Mason is having any hunger cycles. We try and space out his boluses by 3 and 1/2 to 4 hours to allow him some time to get hungry. Before each bolus, I offer a sippy and snacks for him to take in orally. He also actively participates in lunch with me and dinner with Travis and I. At these times, we aim to give him experience with the food that we are eating, along with his usual crackers. This helps him to overcome his texture aversion.
Another goal just given to us by his OT is to try and get Mason to drink a little bit of whole milk. He is very willing to take sips of what we are drinking, such as water, gatorade, or milk. We hope to have him start taking whole milk in some measurable quantity. Once he can consume a few ounces per day, our OT will propose a 2-3 week trial of eliminating his dinnertime bolus. The goal here is to allow Mason to develop the connection between hunger and orally satisfying that hunger. Since Mason has been tube fed pretty much his whole life, he was never able to develop the connection that tells him to eat if he is hungry. As long as he is 100% tube fed, his tummy magically fills with formula when he is hungry. The hardest part will be convincing Mason's team of docs to buy into this 2-3 week trial, especially during the winter months. Since he is in the 80% for weight, I feel we might have a good shot at it. The milk he drinks will offset the calories lost by eliminating the bolus (and hopefully help convince his docs to allow us to try).
The biggest challenge for us when it comes to Mason's feeding seems to be his internal anatomy. Normally, we would try and have Mason receive a bolus while playing with food so that he can make the connection that food satifies hunger. However, Mason has some interesting anatomy and cannot tolerate a bolus while sitting upright. Somehow, his stomach does not empty well while his is sitting. He has his docs stumped. We give all boluses in a reclined position and he handles them really well. When he gets his bolus, we try and have him suck a pacifier (although his drive to do this is naturally fading with age) or give him a cracker and sippy cup.
I will post another feeding update in a couple of weeks.
Friday, November 21, 2008
New Blog
We originally created Mason blog to keep our family and friends up to date on his fetal surgery, birth and progress with battling CDH. Since then, his site has grown to help provide information and hope to other families faced with a CDH diagnosis.
Now that we have lots going on in our family and are expecting baby #2, we have decided to create a new blog to keep our family and friends updated on all of us. You can find our new site at http://familyfour-rosie.blogspot.com.
We plan to keep Mason's blog up to date as well, but more specifically related to his progress with CDH. We really don't want to lose site of the information and hope that his page can provide others.
Now that we have lots going on in our family and are expecting baby #2, we have decided to create a new blog to keep our family and friends updated on all of us. You can find our new site at http://familyfour-rosie.blogspot.com.
We plan to keep Mason's blog up to date as well, but more specifically related to his progress with CDH. We really don't want to lose site of the information and hope that his page can provide others.
Friday, November 14, 2008
CDH Clinic - Long Update
Thursday was Mason's big day at the UofM CDH Clinic. Even though he had to wake up early for his appointment, he seemed to be in a good mood for the day.
First, Mason saw the same Physical Therapist that treated him while he was in the NICU. He did an evaluation to see where Mason falls on the charts for his gross motor skills. Right now, Mason is at a level equal to 10 months and 3 weeks. This was not really unexpected news for us, as we are currently working with Early On to try and get him caught up. The therapist thought that if we really challenge Mason physically at home, he may be able to catch up at a faster rate. We will share this info with his Early On therapist to try and develop a more structured program for him.
Mason saw a dietitian next. Overall they are happy with his weight gain and size. He is in the 80% for weight and 75% for height (on a scale corrected for his prematurity). We have a plan to modify his feeding schedule slightly so that he will only get 3 boluses during the day and 4 to 5 hours of continuous feeds at night. It will take us about 4 weeks to get to this goal if all goes well. The plan is the modify it slightly every week until we reach his new goal. The reason behind this new plan is to space out his feeds by at least 4 hours to allow more time for hunger to develop.
Next we saw an Occupational Therapist. It was nice that this therapist has some prior experience with Mason (from last week's appointment). He is showing some very positive signs that he is ready to venture into eating. Lately he has been drinking more and more water and even drank 2 and 1/2 ounces one day last week. He is also willing to explore and taste and variety of foods now. Tonight he even ate 4 to 5 small bites of vanilla pudding, a huge step for him!
Next we saw the Pulmonologist. They are very pleased with his progress so far. His lung function falls within normal range, but on the low side. Given Mason's history, they were not expecting results this good. We are all amazed at how well he has done in this area! The plan is to continue with his breathing treatments until winter is over. In the spring, they feel that we might be able to discontinue them since he does not show any obstructions when breathing.
Next we saw the Pediatric Surgeon. He was very impressed with Mason's progress so far. We reviewed his latest chest x-ray from last month and there seems to be some areas of concern. Mason's CDH was on the right side, so it is difficult to tell what is really going on. We did see some bowel above his liver, but it looks to be beneath his diaphragm. We are hoping that he did not reherniate, but we know this is very common in kids with a patch. Right now, the plan is to take another x-ray in 3 months. We will be watching him closely for any signs that might indicate a need for quicker action.
Lastly, we saw the Cardiologist. Mason had a heart echo on Monday and the results were good. He does not have any pulmonary hypertension at this time. This is pretty much what we expected since he did not have to struggle with this at birth. They had a hard time seeing all of the pulmonary veins and how they returned to his heart. There were many factors that played into this: his age, the fact that he was sedated and he has some strange anatomy in that region (one of the reasons ECMO was difficult for him). The plan is to see the Cardiologist yearly and then get another heart echo when Mason will tolerate it while awake, usually around age 3 or 4. The great news is that he shows no ill effects of having ECMO cannulation through the heart. His heart murmur has also seemed to disappear.
Mason will return to the CDH clinic in 1 year. Until then, he will continue to have individual follow-up appointments in each area. His PT and OT schedule will remain the same.
I have to say how proud we are of Mason. He was one of the sickest CDH kiddos that UofM had and now he is doing great! We were reminded of how much a miracle he really is!! We have received such great medical care from UofM and have such a wonderful network of friends and family that have prayed for and supported us. We have so much to be thankful for.
First, Mason saw the same Physical Therapist that treated him while he was in the NICU. He did an evaluation to see where Mason falls on the charts for his gross motor skills. Right now, Mason is at a level equal to 10 months and 3 weeks. This was not really unexpected news for us, as we are currently working with Early On to try and get him caught up. The therapist thought that if we really challenge Mason physically at home, he may be able to catch up at a faster rate. We will share this info with his Early On therapist to try and develop a more structured program for him.
Mason saw a dietitian next. Overall they are happy with his weight gain and size. He is in the 80% for weight and 75% for height (on a scale corrected for his prematurity). We have a plan to modify his feeding schedule slightly so that he will only get 3 boluses during the day and 4 to 5 hours of continuous feeds at night. It will take us about 4 weeks to get to this goal if all goes well. The plan is the modify it slightly every week until we reach his new goal. The reason behind this new plan is to space out his feeds by at least 4 hours to allow more time for hunger to develop.
Next we saw an Occupational Therapist. It was nice that this therapist has some prior experience with Mason (from last week's appointment). He is showing some very positive signs that he is ready to venture into eating. Lately he has been drinking more and more water and even drank 2 and 1/2 ounces one day last week. He is also willing to explore and taste and variety of foods now. Tonight he even ate 4 to 5 small bites of vanilla pudding, a huge step for him!
Next we saw the Pulmonologist. They are very pleased with his progress so far. His lung function falls within normal range, but on the low side. Given Mason's history, they were not expecting results this good. We are all amazed at how well he has done in this area! The plan is to continue with his breathing treatments until winter is over. In the spring, they feel that we might be able to discontinue them since he does not show any obstructions when breathing.
Next we saw the Pediatric Surgeon. He was very impressed with Mason's progress so far. We reviewed his latest chest x-ray from last month and there seems to be some areas of concern. Mason's CDH was on the right side, so it is difficult to tell what is really going on. We did see some bowel above his liver, but it looks to be beneath his diaphragm. We are hoping that he did not reherniate, but we know this is very common in kids with a patch. Right now, the plan is to take another x-ray in 3 months. We will be watching him closely for any signs that might indicate a need for quicker action.
Lastly, we saw the Cardiologist. Mason had a heart echo on Monday and the results were good. He does not have any pulmonary hypertension at this time. This is pretty much what we expected since he did not have to struggle with this at birth. They had a hard time seeing all of the pulmonary veins and how they returned to his heart. There were many factors that played into this: his age, the fact that he was sedated and he has some strange anatomy in that region (one of the reasons ECMO was difficult for him). The plan is to see the Cardiologist yearly and then get another heart echo when Mason will tolerate it while awake, usually around age 3 or 4. The great news is that he shows no ill effects of having ECMO cannulation through the heart. His heart murmur has also seemed to disappear.
Mason will return to the CDH clinic in 1 year. Until then, he will continue to have individual follow-up appointments in each area. His PT and OT schedule will remain the same.
I have to say how proud we are of Mason. He was one of the sickest CDH kiddos that UofM had and now he is doing great! We were reminded of how much a miracle he really is!! We have received such great medical care from UofM and have such a wonderful network of friends and family that have prayed for and supported us. We have so much to be thankful for.
Sunday, November 9, 2008
Watching Outside....
Things have been going pretty well here. We are now officially in "lock-down". This winter we will not take Mason to any public places, besides Dr. appointments. He has approval to attend playgroup once per week and attend family functions this winter (if all attendees are healthy of course).
Tomorrow Mason will be going in for a sedated heart echo. This is just a follow-up before our big CDH clinic appointment at UofM. It is especially critical for Mason since he had ECMO cannulation directly into his heart (a procedure often used for infants with congenital heart defects), resulting in 3 heart surgeries. Mason was not born with any heart defects, however his anatomy did not allow him to sustain on ECMO the traditional way. Hopefully they don't see anything alarming.
Thursday is our CDH clinic appointment at UofM. They just developed a multi-disciplinary clinic for CDH patients. When we go, Mason will see Pediatric Surgery, Pulmonary, Cardiology, PT, OT and Dietary. We are very excited to see everyone all in one appointment. We are so thankful that UofM has developed this program.
Friday we have our 16 week ultrasound for baby-to-be Ellinger. We have still not decided if we are going to try and find out the sex. Right now we are leaning towards having it be a surprise. I am thinking that curiosity might get the best of us, and we may change our minds later.
We spent most of the weekend at home cleaning up leaves and branches in the yard. Travis and I had a chance to get out to see a Lions game this afternoon. It started out as an exciting game but unfortunately the Lions lost again. Grandma and Grandpa Sennett looked after Mason for us, and wore him out :)
I captured a few good pictures of Mason watching his Dad work outside on Saturday. He loves to stand and look out the front windows.
Tomorrow Mason will be going in for a sedated heart echo. This is just a follow-up before our big CDH clinic appointment at UofM. It is especially critical for Mason since he had ECMO cannulation directly into his heart (a procedure often used for infants with congenital heart defects), resulting in 3 heart surgeries. Mason was not born with any heart defects, however his anatomy did not allow him to sustain on ECMO the traditional way. Hopefully they don't see anything alarming.
Thursday is our CDH clinic appointment at UofM. They just developed a multi-disciplinary clinic for CDH patients. When we go, Mason will see Pediatric Surgery, Pulmonary, Cardiology, PT, OT and Dietary. We are very excited to see everyone all in one appointment. We are so thankful that UofM has developed this program.
Friday we have our 16 week ultrasound for baby-to-be Ellinger. We have still not decided if we are going to try and find out the sex. Right now we are leaning towards having it be a surprise. I am thinking that curiosity might get the best of us, and we may change our minds later.
We spent most of the weekend at home cleaning up leaves and branches in the yard. Travis and I had a chance to get out to see a Lions game this afternoon. It started out as an exciting game but unfortunately the Lions lost again. Grandma and Grandpa Sennett looked after Mason for us, and wore him out :)
I captured a few good pictures of Mason watching his Dad work outside on Saturday. He loves to stand and look out the front windows.
Monday, November 3, 2008
Halloween Fun
We hope everyone had a great weekend. Our Halloween weekend was filled with excitement. On Friday, Mason visited his CDH buddy Riley for a playdate. They had lots of fun. Riley's mom and I dressed them up in their costumes and took a few pictures. I don't think either boys really enjoyed this part, but we sure did :)
Mason's Grandma and Grandpa Ellinger came down for a weekend visit as well. We dressed up Mason and decided to take him to trick-or-treat at a couple of neighbors houses. We didn't take him out any further since it is cold and flu season. We managed to get him out before many other kids were out to avoid germs. We spent the rest of the evening roasting pumpkin seeds and handing out candy.
Now for the pictures you have all been waiting for :)
Thursday, October 23, 2008
Pumpkin Patch & Cider Mill
Last weekend we took Mason to our favorite local Pumpkin Patch and then to our favorite Cider Mill. He really enjoys getting out, especially when we are outdoors exploring things. He loved the pumpkin patch and was even willing to touch the pumpkins. At the Cider Mill he loved touching the corn stalks and hay and even had a chance to sit on the tractor with his Dad.
I love this picture because he was looking back and smiling at his Dad :)
Exploring the pumpkins....
Cider & donuts with Mom (can you tell who inherited my super fair skin?)
With Dad by the cornstalks
Sitting on the tractor with Dad
Sunday, October 12, 2008
Big Brother
We have a very special announcement. As you can tell from the title, Mason is going to be a big brother! We are all very excited to add another member to our family!
We discovered in August that we were pregnant and I am now 12 weeks along. Our official due date is April 27th. We just had our first early ultrasound on Friday and the baby looks great so far with a strong heartbeat. We have some detailed testing coming up next week and again in 6 weeks.
The recurrance rate for isolated CDH (which is what Mason was born with) is only about 2%. It is usually referred to as a sporatic event, having no known cause as of yet. Even though the risk is low, it will always be in the back of our minds until the baby is born.
When we tell Mason he is going to be a big brother, he smiles :)
We discovered in August that we were pregnant and I am now 12 weeks along. Our official due date is April 27th. We just had our first early ultrasound on Friday and the baby looks great so far with a strong heartbeat. We have some detailed testing coming up next week and again in 6 weeks.
The recurrance rate for isolated CDH (which is what Mason was born with) is only about 2%. It is usually referred to as a sporatic event, having no known cause as of yet. Even though the risk is low, it will always be in the back of our minds until the baby is born.
When we tell Mason he is going to be a big brother, he smiles :)
Thursday, October 9, 2008
Update & Pic's
I don't really have any good excuses for why I haven't posted in a while. I guess I decided to take a little break to get some much needed house cleaning and organizing done.
In the last few weeks, we have been enjoying whats left of our nice weather before the real cold stuff comes. Mason has really developed a love for being outdoors and I try and make it a point to take him out everyday. When it is colder, sometimes we just sit on the porch for a while and watch for Dad to come home. Today the weather was nice so we pushed him around in his wagon and let him play in his Cozy Coupe.
We have had some routine doctor appointments and follow-ups. Mason had his well baby check a few weeks ago and received some vaccines. To our surprise, he only cried a couple of times and once I picked him up, he stopped. Yesterday we had a follow-up with his Pulmonary team. They were very happy with his progress. He was even recovering from a cold and his lungs sounded clear and equal. Since he is doing well with growing and lung function, he will not need the shots to prevent RSV this winter. This was great news. We received a referral to a Pediatric Dentist since some of Mason's upper teeth are coming in discolored. This is most likely due to all of the antiobiotics he received during his NICU stay. The good news is that adult teeth start to form around 4 months, and by that time Mason was home and off of all antibiotics.
A couple of weeks ago we took Mason on this first trip to the zoo. We met up with my sister and Mason's buddy Austin and his parents. It was a pretty chilly day, but we had a lot of fun. We saw lots of animals and I think Mason enjoyed himself. We waited until the end to take the boys on the train, but they both fell asleep before we could ride. We decided to let them sleep :)
In the last few weeks, we have been enjoying whats left of our nice weather before the real cold stuff comes. Mason has really developed a love for being outdoors and I try and make it a point to take him out everyday. When it is colder, sometimes we just sit on the porch for a while and watch for Dad to come home. Today the weather was nice so we pushed him around in his wagon and let him play in his Cozy Coupe.
We have had some routine doctor appointments and follow-ups. Mason had his well baby check a few weeks ago and received some vaccines. To our surprise, he only cried a couple of times and once I picked him up, he stopped. Yesterday we had a follow-up with his Pulmonary team. They were very happy with his progress. He was even recovering from a cold and his lungs sounded clear and equal. Since he is doing well with growing and lung function, he will not need the shots to prevent RSV this winter. This was great news. We received a referral to a Pediatric Dentist since some of Mason's upper teeth are coming in discolored. This is most likely due to all of the antiobiotics he received during his NICU stay. The good news is that adult teeth start to form around 4 months, and by that time Mason was home and off of all antibiotics.
A couple of weeks ago we took Mason on this first trip to the zoo. We met up with my sister and Mason's buddy Austin and his parents. It was a pretty chilly day, but we had a lot of fun. We saw lots of animals and I think Mason enjoyed himself. We waited until the end to take the boys on the train, but they both fell asleep before we could ride. We decided to let them sleep :)
Mason and his partner in crime.
Pick me up please...
It's only a matter of days before I can pull this open....
Can I please have that camera?
Monday, September 15, 2008
Back to School
The big news last week is that Mason is back to school. He attends the Early On program through the school system. This year he is attending playgroup on Tuesday mornings and he has Physical Therapy on Wednesday morning. Last year, PT was at home, and this year it will be at the school. Mason has also been allowed to attend playgroup for the whole school year. Our Pulmonologist is very happy with his lung function and sees no issue with one hour of exposure per week. This is great news. However, we will still be on lockdown this winter and will need to avoid public places and contact with other children (besides the 1 hour of playgroup).
Our little guy is crawling everywhere and has even developed a "turbo" speed for chasing after the dog. He is doing great with pulling up and cruising the furniture. Stairs have been his latest milestone. He is now able to go up our entire flight of stairs (about 12 steps)! We have been right behind him making sure he doesn't fall. We have already installed a baby gate at the top of the stairs and now we will be heading out to get one for the bottom too.
Mason is also starting to develop a vocabulary. Besides his usual ma-ma, da-da, ba-ba, and boo-boo, he has added ball and dog. We have been working hard to "label" objects for him and have been asking him to repeat words that we say. He does a good job with ball and dog.
Here are some pictures of Mason enjoying the outdoors a couple weeks ago. His Grandma and Grandpa Ellinger were over for the weekend helping us clean up the jungle that came with our house :)
Our little guy is crawling everywhere and has even developed a "turbo" speed for chasing after the dog. He is doing great with pulling up and cruising the furniture. Stairs have been his latest milestone. He is now able to go up our entire flight of stairs (about 12 steps)! We have been right behind him making sure he doesn't fall. We have already installed a baby gate at the top of the stairs and now we will be heading out to get one for the bottom too.
Mason is also starting to develop a vocabulary. Besides his usual ma-ma, da-da, ba-ba, and boo-boo, he has added ball and dog. We have been working hard to "label" objects for him and have been asking him to repeat words that we say. He does a good job with ball and dog.
Here are some pictures of Mason enjoying the outdoors a couple weeks ago. His Grandma and Grandpa Ellinger were over for the weekend helping us clean up the jungle that came with our house :)
Tuesday, August 26, 2008
1 Year Home - Aug 20th
I know...I haven't posted in a while. It has been a busy couple of weeks again. Now that Mason is crawling around, it is next to impossible sit down at the computer for more than a couple of minutes. Our mobile little guy doesn't spend more than a few seconds in each spot and then he is off to the next. He usually crawls right past his toys in search of some trouble spots like the dog dishes, electrical outlets, curtains, stairs, etc. I guess they look more exciting :) He has also learned how to pull himself up on the couch and chair and is starting to cruise around. I can't believe how fast he is developing physically.
We had the chance to celebrate Mason's homecoming anniversary on August 20th. I can't believe he has been home for 1 year already! Time has gone by so fast! Mason has far exceeded everyone's expectations and has healed and progressed so quickly. The only piece of medical equipment we have left is his feeding pump. I look at him today crawling around and it is hard to believe that just over a year ago he was fighting for his life. We want to thank everyone for their prayers and warm wishes over the last year. We also want to thank everyone involved at UCSF and UofM for giving us hope that one day we would be able to bring our little boy home. It has been such a wonderful and rewarding year!
Mason on his first day home, 8/20/07
Mason 1 year later!
Travis hard at work grilling
In other news, Mason has started to take a few steps forward with oral eating. He is now drinking some water, about 1/2 ounce per day. For most I am sure this won't sound like much, but for Mason it is HUGE!! Just the fact that he is willing to drink is a big step forward for him. He is also willing to put some things in his mouth to lick. The most popular items are animal crackers, puffs, and goldfish. This is also a very big step for Mason. It shows that he is now willing to experiment and taste a little. Hopefully he can continue this upward trend :)
Monday, August 11, 2008
Test Results & Crawling!
We had a very busy week last week. Mason had 5 appointments at UofM for various follow ups and tests. We received some pretty good news from the tests.
Mason started out the week visiting his Physical Medicine doc who is keeping track of his physical development. She usually sees him every 3 months just to make sure everything is on track. Initially when she first met Mason, she was very concerned that he might have Cerebral Palsy. The last two visits went great and she sees no evidence of CP! Mason is just starting to crawl (more on that later...) and he is also good at standing and is even starting to try and cruise. She said that Mason is within the range of "normal" for his age! After all he has been through, we didn't think we would hear that term until he was 2 or older. Mason continues to amaze us with his strength and growth.
After this appointment we visited his OT for some feeding therapy. This appointment was business as usual, although Mason has learned to give the stink eye to his therapist. He tells us loud and clear that he does not appreciate these appointments. The OT and I agreed that we need to get Mason off of night feeds. The stomach and digestive system was just not made to get a continuous drip overnight. After much debate with the rest of his care team, the decision was made to remove Mason from night feeds for about 7 hours. This reduced his overall calorie intake, so we will watch his weight closely to make sure he is still growing appropriately.
Wednesday was our biggest day. He had a Pulmonology follow-up and then a PFT (lung function test). Mason weighed in at 23 pounds, 3 oz. The Pulmonary team was impressed at his new size and thought that he should be able to handle the winter months pretty well (with lock-down of course). Next was the big test. He was sedated and the lung function test was performed. Are you ready for this? Mason's lungs are almost normal for his size and age! He falls just below normal and is categorized as having only "mild restriction". After winter, the docs feel that he might be able to shed some of his breathing meds! This is absolutely amazing to us. For those of you who don't know his whole history, Mason was born with severe right sided CDH. He was born with almost no right lung and a severely compromised left lung. It is truly amazing how the human body can recover from something like this.
We ended the week with a hearing test. Mason passed this without any concerns to follow up with. He will continue to be tested every 6 months until he is 4 years old. CDH and ECMO have a strong correlation to progressive hearing loss. It can happen at any time and progress to be moderate to severe in many kids. Before these tests, we always prepare ourselves for the possibility. We will see what happens next time...
This week, Mason started to crawl! It was so exciting to watch and he is so proud of himself! He started by getting onto all fours by himself and a couple of days later he was propelling himself forward. Last night he was trying to crawl everywhere! He has also figured out how to get himself into a sitting position. I left him on the family room floor (lying down) so I could put a pot of water on the stove and when I turned around he was across the room sitting down with a huge grin on his face.
Tuesday, July 29, 2008
Summer Fun
Mason & Great Grandma snuggling on the 4th of July
Bath time in the kitchen sink!
Mason & his buddy Noah at the ECMO picnic in June. I love this picture because it looks like Noah is devising a plan to get his toy back!
Mason listens intently as Noah explains how eating really isn't as bad as it seems...Wednesday, July 23, 2008
Surgery & Recovery
Sorry it has been so long since we last posted. It has been a busy couple of weeks with some new happenings.
I have been talking extensively with Mason's OT regarding the suggested feeding programs. At this time she is very against it and advised that it should be our last option if nothing else works. Especially in Mason's case since he seems receptive to food, but his gag reflex is preventing him from eating. We both agreed that we really need to give him some time to resolve it with home and weekly hospital therapy. Right now we are working with toothbrushes to try and help desensitize his mouth. We also agreed that we needed to know how is esophagus functioning and if this is contributing to his oral aversion. We agreed to schedule a swallow study to check it out.
The swallow study took place Thursday of last week. It is basically a test done with x-ray fluoroscopy where Mason sits in a special seat and drinks a barium liquid. It is usually done to see if babies aspirate any into their airway while swallowing. Since we already know that Mason does not do this, we were just concentrating on the motility of his esophagus (or how well it pushes food into the stomach). Getting Mason to drink was near impossible, so we ended up squirting some into his mouth for him to swallow. We were presently surprised when we saw the food traveling down into his stomach. The one issue we did find was that not all of the liquid traveled into his stomach. There was a little that sort of "sat" on top of his Nissen wrap. After reviewing the test, our surgeon decided it was worth while to dialate his wrap one more time.
Mason has had an outpatient surgery scheduled for some time to do some maintenance work that was not an emergency before leaving the hospital last year. The surgery was scheduled for July 21st when Mason was over 1 year old and over 20 pounds. Mason's team of docs agreed that we should do the wrap dilatation at the same time so that he would only be under general anesthesia once.
Mason had both procedures on Monday and they went well. He actually weighed over 22 pounds when they took his pre-surgery vitals! He came home a couple of hours later and did great that night. Yesterday he had a tough day coping with the pain from his originally scheduled surgery and was breathing pretty shallow. This is common after a surgery and it was his way of trying to protect himself from more pain. Since he was also running a fever, we called the pulmonologist and she suggested to take him to the ER to get a chest x-ray and to make sure his sat's were ok. By the time we reached the UofM ER, we had managed to get his pain under control and he was taking a nap. His sat's were 97-100% and his x-ray looked good (they wanted to rule out pneumonia). Today he has been back to his normal self.
A couple of weeks ago we purchased a front facing car seat and he has been using it this past week. He found the first one we bought to be uncomfortable so we ended up exchanging it for a different one and he loves it! Mason is also getting a little closer to crawling. He does really well when we give him a little support under the chest. When we take the support away, he has a hard time keeping his knees under him. He has the motion down and hopefully with a little more strength and stretching, he will be crawling after Buster! We are also working a lot with trunk rotation and getting him to transition from laying down to sitting. This one is proving to be a bit more difficult than we anticipated. Mason is also doing better standing against furniture and has learned to fall onto his butt, where all of the padding is :) He is also starting to cruise a little when he sees an object he wants, like the remote or the phone. We have given him a bit of a break this summer with his PT and are hoping to start back up at UofM in August and then with Early On when school is in session.
I will post some more updated pictures in a few days...
As some of the other CDH mom's have mentioned, there has been a CDH full moon this past week. Some of the kiddos that were home doing well have ended up in the hospital for unplanned surgeries and illnesses. Please say an extra prayer for Ethan, Sofia, Cadenne and Zach.
I have been talking extensively with Mason's OT regarding the suggested feeding programs. At this time she is very against it and advised that it should be our last option if nothing else works. Especially in Mason's case since he seems receptive to food, but his gag reflex is preventing him from eating. We both agreed that we really need to give him some time to resolve it with home and weekly hospital therapy. Right now we are working with toothbrushes to try and help desensitize his mouth. We also agreed that we needed to know how is esophagus functioning and if this is contributing to his oral aversion. We agreed to schedule a swallow study to check it out.
The swallow study took place Thursday of last week. It is basically a test done with x-ray fluoroscopy where Mason sits in a special seat and drinks a barium liquid. It is usually done to see if babies aspirate any into their airway while swallowing. Since we already know that Mason does not do this, we were just concentrating on the motility of his esophagus (or how well it pushes food into the stomach). Getting Mason to drink was near impossible, so we ended up squirting some into his mouth for him to swallow. We were presently surprised when we saw the food traveling down into his stomach. The one issue we did find was that not all of the liquid traveled into his stomach. There was a little that sort of "sat" on top of his Nissen wrap. After reviewing the test, our surgeon decided it was worth while to dialate his wrap one more time.
Mason has had an outpatient surgery scheduled for some time to do some maintenance work that was not an emergency before leaving the hospital last year. The surgery was scheduled for July 21st when Mason was over 1 year old and over 20 pounds. Mason's team of docs agreed that we should do the wrap dilatation at the same time so that he would only be under general anesthesia once.
Mason had both procedures on Monday and they went well. He actually weighed over 22 pounds when they took his pre-surgery vitals! He came home a couple of hours later and did great that night. Yesterday he had a tough day coping with the pain from his originally scheduled surgery and was breathing pretty shallow. This is common after a surgery and it was his way of trying to protect himself from more pain. Since he was also running a fever, we called the pulmonologist and she suggested to take him to the ER to get a chest x-ray and to make sure his sat's were ok. By the time we reached the UofM ER, we had managed to get his pain under control and he was taking a nap. His sat's were 97-100% and his x-ray looked good (they wanted to rule out pneumonia). Today he has been back to his normal self.
A couple of weeks ago we purchased a front facing car seat and he has been using it this past week. He found the first one we bought to be uncomfortable so we ended up exchanging it for a different one and he loves it! Mason is also getting a little closer to crawling. He does really well when we give him a little support under the chest. When we take the support away, he has a hard time keeping his knees under him. He has the motion down and hopefully with a little more strength and stretching, he will be crawling after Buster! We are also working a lot with trunk rotation and getting him to transition from laying down to sitting. This one is proving to be a bit more difficult than we anticipated. Mason is also doing better standing against furniture and has learned to fall onto his butt, where all of the padding is :) He is also starting to cruise a little when he sees an object he wants, like the remote or the phone. We have given him a bit of a break this summer with his PT and are hoping to start back up at UofM in August and then with Early On when school is in session.
I will post some more updated pictures in a few days...
As some of the other CDH mom's have mentioned, there has been a CDH full moon this past week. Some of the kiddos that were home doing well have ended up in the hospital for unplanned surgeries and illnesses. Please say an extra prayer for Ethan, Sofia, Cadenne and Zach.
Wednesday, July 9, 2008
Big Boy
I have lots to update, but I have to start with Mason's ped. surgery appointment yesterday. He weighed in at 21 pounds 2 ounces! I was just hoping for anything over 20 and he blew right by that. It was a gain of 2 pounds in just under 4 weeks. We are hoping that it was a true gain and not fluid retention. He also had a chest x-ray and it looked good, everything is where it is supposed to be. Our surgeon was comfortable telling us to come back in 11 months! WOW! She also suggested the possibility of looking into an intense feeding program for Mason since he is still struggling with oral feeds. We are just starting to research what is out there but are not sure if Mason is really old enough to handle such an intense program. Thank you to all of the other CDH moms for your input and advice so far!
Last weekend was the UofM ECMO picnic. We went and had a blast. Mason was reunited with his ECMO buddy Noah and they even had a chance to play. It was great seeing everyone that took care of our little guy when he was so sick. We even had a chance to see Ethan, another CDH buddy that was discharged on the same day! It was great to see how many lives ECMO has touched.
We started our fourth of July by giving Mason his first haircut! It was getting pretty long and he was growing a mullet. He handled it well and now looks very handsome :) We spent the 4th of July at Grandma and Grandpa's house. It was a chance to celebrate Mason's birthday and summer freedom with everyone (since we decided to keep his 1st birthday party small). Mason even had a chance to hang out with his Great Aunt and Uncle from New Mexico.
Pre-Haircut - "Do we have to?"
Post Haircut - What a handsome boy!
On Sunday, Travis and I took Mason to a petting zoo. He has shown a complete love for animals, especially dogs. He loved it! When we were paying our admission, there was a donkey that was just wondering around freely and Mason thought it was so funny. He got a chance to see some pigs, cows, goats, etc. He even tried to pet a few. Of course I was standing by with my antibacterial wipes :) I was worried that the smell would get to him since he has some sensory issues, but it didn't seem to bother him at all. Before we went to the petting zoo, Mason had his first out to eat experience at Jimmy John's. He didn't want to eat anything, but seemed to enjoy flirting with the staff.
My First Eating Out Experience
Check Out Those Horns!
Friday, June 27, 2008
Good News
Wednesday we received great news. Mason no longer needs to sleep with oxygen! His oxygen trial looked good to his Pulmonologist. We are hoping to have the equipment picked up soon.
Mason received a new feeding pump last Friday. It is a smaller and more modern version of what he previously had. This new pump does not depend on gravity so hopefully the the messy part of his tube feeds will be greatly reduced. It also comes with a small backpack so that when he begins to walk, he can wear it on his back. Getting adjusted to the new pump has been a bit of a struggle as it seems to pump the food in faster than the old one. We are still in the process of readjusting the settings to see what works best for him.
Mason is also switching over to a big boy formula. He will get a new formula called Nutren Jr. (the Nestle version of Pediasure). We should be receiving a two week supply sometime today. The formula comes pre-mixed so it should save us some extra time.
Physically Mason is making some progress, slow and steady. He has a huge drive to become mobile but his body has not caught up yet. This proves to be very frustrating for him. He has become very good at staying up on all fours and rocking back and forth, but is still working on the balance and coordination necessary to begin crawling. As always, he loves to stand and jump so it is pretty hard to get him to want to crawl. He is getting pretty good at climbing. We will build him some "stairs" out of the couch cushions and he has lots of fun trying to climb them.
I can't believe how fast babies learn at this age. Mason has learned to wave hi and bye-bye. I actually think his next word might be hi. He even waves to the dog every day :) He is also trying to mimic sounds from some of his toys. Yesterday he was trying to meow like a kitty (wish I could have gotten that on video). Just last weekend, he learned how to smack his lips and does it all the time now.
Looking for his partner in crime
Attemping to scale Mt. Stairway
Sunday, June 22, 2008
New Pics
There is not too much new in the way of an update. The only thing is that Mason's oxygen trial was moved up to this weekend due to the availability of an extra MedEquip box (our Pulmonologist has the software for this box on hand). Mason spent Friday night and Saturday night without oxygen and seemed to do ok. He had a couple of small desat's on Saturday night so we are not sure if those will end up keeping him on oxygen. We will take the box to UofM on Monday to see what the downloaded data looks like.
Cashed out after a day of playing
Cashed out after a day of playingPushing the numbers down
Tuesday, June 17, 2008
New Look
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.
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.
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.
Tuesday, March 25, 2008
10 Months Old!
I hope everyone had a Happy Easter! We had some family over and had a great time. Mason did really well with everyone and even let his Mom out of his sight for a while with no complaints! The Easter Bunny brought him some toys which he loved!
Overall, Mason is doing pretty well. Last week he weighed in a few ounces shy of 16 pounds. It has been a few days, so we are guessing he is 16 pounds now. UofM just called today and increased his total daily calories to match his new weight. Mason is also going to get another trail off of his nighttime oxygen. We need to straighten out some software issues with his Pulmonary team and we will be ready for trail. Not sure how long the software issue is going to take.
Overall, Mason is doing pretty well. Last week he weighed in a few ounces shy of 16 pounds. It has been a few days, so we are guessing he is 16 pounds now. UofM just called today and increased his total daily calories to match his new weight. Mason is also going to get another trail off of his nighttime oxygen. We need to straighten out some software issues with his Pulmonary team and we will be ready for trail. Not sure how long the software issue is going to take.
Mason's occupational therapy is going pretty well. He is now totally comfortable making a mess in his baby food. Instead of just getting himself messy he now includes the walls, the floor and the dog :) Our goal is to get Mason to feed himself. Instead of playing with toys in his food, he is playing with spoons and will feed himself a little. So far he is enjoying all of the baby food flavors, but only if he feeds himself. We are also working with a sippy cup.
Unfortunately Mason is still having some gagging issues. We think this is caused by a combination of his small stomach and his weak esophagus. After some discussion with his surgeon, we both agreed that it is time to take a look and possibly dialate his stomach wrap, which could possibly be a little tight. His esophagus has always been pretty weak because of how his anatomy had formed before he was born. We depend on gravity to help him digest after he eats something by mouth. This will hopefully improve and normalize as he grows and gets stronger. The procedure is scheduled for April 4th and will last about an hour. Mason is undergo general anesthesia and the surgeon will use a small camera to look at everything. The procedure is scheduled as outpatient, so he should be able to come home afterwards.
You may have noticed an addition to the page in the last couple of days. Travis will be walking in the March for Babies on April 26th. His goal is to raise at least $500 for the walk. Thank you to everyone who has donated or committed to donate so far!! The March of Dimes is a very important organization to us because Mason was affected by both a birth defect and prematurity. We are hoping that starting next year, Mason and I will be able to join Travis in the annual walk.
Family Easter Picture
Playing with toys.
Feeding myself.
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