When I look back at where we were 18 months ago, I am amazed at how far we've come. We've had ups and downs as you all are aware, and the last 6 months have been no exception. On the really positive note, we have set a record and have only been in the hospital once since Mason's first birthday. On the troubling note, we've been dealing with some of the same issues the last couple of months as August and September last year. Here's the last 6 months in a nutshell:
Lungs/Heart:
Mason has made some good progress with his lungs over the last 6 months. On average, he needs between 2 and 3 L of oxygen during the day and between 1 and 2 L of oxygen at night. He has had a few episodes of increased need including one from a cold in early May, once over the summer when he had a mild cold, once in August after getting aspiration pneumonia, and over the last couple of days now that he has another aspiration pneumonia.
We have continued to be able to wean down the steroids since March and he's now taking what is considered a "non-therapeutic" dose. This means that in all likelihood, the amount of steroid he is getting doesn't do anything for his lungs, but does help to keep his hormone levels (specifically cortisol) balanced. At the end of October, assuming everything goes ok between now and then, Mason will switch from prednisone to hydrocortisone and begin a 6 month very controlled process of weaning off of steroids all together. It is going to be a rough road, but in the end will be very, very good for him.
As far as the heart goes, thankfully, his heart is doing just the same as it has since last year. His heart continues to have to work extra hard to compensate for his lung disease, but fortunately, that extra work hasn't increased. We will continue to monitor Mason's heart about every 6 months, hoping for no change, until his lungs are fully developed.
Eating/Weight:
We've tried a couple of times to start feeding Mason by mouth, but each time, something doesn't go right and we decide it's not the right time. Mason continues to have difficulty coordinating the swallowing/breathing thing and continues to have significant reflux, so eating by mouth is still not a possibility. It will come in time, but not in the near future. We no longer see signs of "dumping syndrome" which is a huge blessing.
We have finally gotten Mason's caloric intake pretty well under control. Mason is no longer obese, which has been much better on his breathing. He is still short for his age, but his weight is no longer increasing exponentially. The official stats from his 18 month doctor visit today: 21 lb. 6 oz and 28 inches long.
Our biggest challenge over the last couple of months has been Mason's reflux (we think). Mason started spitting up again about 6-7 weeks ago and 5 weeks ago was diagnosed with aspiration pneumonia. With his lack of coordination in swallowing, some food had slipped into his lungs and camped out. With a short burst of steroids and some antibiotics, he improved back to his baseline and we were able to resume weaning his steroids. Unfortunately, sometime in the last week, it happened again. An x-ray taken today confirmed that he has aspirated again, and once again, developed pneumonia. Fortunately, this time, we caught it earlier and are hopeful that a course of antibiotics is all that is needed. We'll have to see what the next week or so brings. Hopefully increasing steroids won't be necessary. In order to figure out why this is happening again, we've got a referral for an upper GI study (dye put into the feeding tube to determine if the surgery from last December is still effective) and an appointment with the GI doctor next week. I'll keep you posted on what we find out.
Development:
Despite the recent developments with Mason's reflux, he has continued to make progress with his motor development. He is now standing almost all of the time, cruising around on furniture, and even walking while holding 1 or 2 of our hands. He is doing some form of crawling for very short distances (mostly in a tri-pod format - 1 hand down and on both knees, or in a commando crawl on his belly), but prefers to be standing. He continues to work with a PT from the school district every other week and periodic check ins with the PT at the medical office.
Mason is having some challenges with communication as well. We are happy to say that we know he understands most of what we say to him, but he has a hard time letting us know what he wants/needs. He is able to say 3 words (mama, dog, and ina) as well as wave hi and bye most of the time, but otherwise doesn't communicate. We are working with a teacher from the school district to help stimulate his mouth to want to form words/babble and teach him how to use signs to communicate. It's amazing how much learning to communicate comes with eating or playing with food. We will just have to learn some other ways to help Mason (and us) learn to communicate. We know he has the capacity, just needs the right stimulus and methods. Since he doesn't have enough breath to talk, we just need to help him learn non-verbal communication for a while.
Overall, the last 6 months have been a joy. We've been able to travel, enjoy the summer, and get out of the house without fear of cold/flu. We've seen Mason go from being a "baby" who couldn't move around to a little boy who loves being mobile and being independent. Mason continues to teach us about patience and unconditional love every day. He is the light of our lives!
We hope this finds everyone doing well. Thank you for all of your support and prayers!
Love, Christi, Bill, and Mason
Monday, September 21, 2009
Tuesday, September 15, 2009
A Good Visit
The provider one sees makes a difference. Sometimes you build rapport with one provider and it makes a difference. Thankfully, after some assertiveness on our part, we were able to see our preferred pulmonologist (lung doctor) today. We were not disappointed. He gets Mason better than the other pulmonologist we've been seeing, knows that Mason "marches to his own drum" (to use his words) and trusts us to know what we are talking about with medications and Mason. It makes all the difference in the world.
We were also wonderfully shocked by Mason while waiting for the doctor to come into the room. Bill has an application on his phone called "Peek-a-Boo Barn" in which animals make a sound inside a barn, Mason taps on the screen and the barn doors open revealing the animal and it's sound. A child's voice then identifies the animal. Mason loves playing with it. Today, after playing with it for a while, Mason dropped the phone down at his side. The game continued and a dog started barking waiting to be let out of the barn. Mason looked down at the phone, looked up at us with a big smile on his face, and said "Dog." We were so impressed; he's been able to say "dog" for a while, but kinda randomly. This time, he clearly was identifying what made the sound -- we couldn't believe he had made the connection. Communication has been challenging for Mason. At 18 months, can only say "Dog" "Mama" and "Ina" (not sure what the last one means). He can occasionally wave "Hi" and "Goodbye," but doesn't say the words and does not do it consistently. Every step he takes with his communication seems to be a giant leap. Today, once again, we are so proud!!
Back to the appointment, the pulmonologist was impressed at how much less distressed Mason looks while just breathing. He remembers seeing Mason before and watching how much he bobbed up and down just to breathe. He remembers his lungs sounding really bad, but was pleasantly surprised today and said Mason's lungs sound much better. He looked through xrays from August 2008 to May 2009 and said he can see improvement. He was impressed by the fact that Mason didn't require hospitalization with his cold and aspiration pneumonia this summer. He knows that Mason is getting better and was encouraged by the signs. He listened to the plans we have for weaning the steroids, was glad to hear that we'll be working with an expert in the field for that wean, and felt that we had a good plan for Mason's other medications.
At the end of the visit, he took the time to write down that he agreed with our plans for the medication changes and for flu and RSV (a really bad virus that affects preemies and kids with lung disease) shots. All of it was in our plans, but he took the time to write down that he agreed with it. Those little steps make all the difference!
We were also wonderfully shocked by Mason while waiting for the doctor to come into the room. Bill has an application on his phone called "Peek-a-Boo Barn" in which animals make a sound inside a barn, Mason taps on the screen and the barn doors open revealing the animal and it's sound. A child's voice then identifies the animal. Mason loves playing with it. Today, after playing with it for a while, Mason dropped the phone down at his side. The game continued and a dog started barking waiting to be let out of the barn. Mason looked down at the phone, looked up at us with a big smile on his face, and said "Dog." We were so impressed; he's been able to say "dog" for a while, but kinda randomly. This time, he clearly was identifying what made the sound -- we couldn't believe he had made the connection. Communication has been challenging for Mason. At 18 months, can only say "Dog" "Mama" and "Ina" (not sure what the last one means). He can occasionally wave "Hi" and "Goodbye," but doesn't say the words and does not do it consistently. Every step he takes with his communication seems to be a giant leap. Today, once again, we are so proud!!
Back to the appointment, the pulmonologist was impressed at how much less distressed Mason looks while just breathing. He remembers seeing Mason before and watching how much he bobbed up and down just to breathe. He remembers his lungs sounding really bad, but was pleasantly surprised today and said Mason's lungs sound much better. He looked through xrays from August 2008 to May 2009 and said he can see improvement. He was impressed by the fact that Mason didn't require hospitalization with his cold and aspiration pneumonia this summer. He knows that Mason is getting better and was encouraged by the signs. He listened to the plans we have for weaning the steroids, was glad to hear that we'll be working with an expert in the field for that wean, and felt that we had a good plan for Mason's other medications.
At the end of the visit, he took the time to write down that he agreed with our plans for the medication changes and for flu and RSV (a really bad virus that affects preemies and kids with lung disease) shots. All of it was in our plans, but he took the time to write down that he agreed with it. Those little steps make all the difference!
Monday, September 7, 2009
On the Mend
Sorry it's been a while since I've posted about Mason. As you can probably guess, Brielle's arrival, struggle with her heart condition, and premature passing has consumed our thoughts, prayers, and energy these past few weeks. We continue to hold our friends Kristie and Ike in our prayers as they travel down this difficult road.
Mason has completely recovered from his aspiration pneumonia and has been doing fairly well with his oxygen need. We were so thankful that he responded well to the antibiotic and steroid burst, and even more thankful that he tolerated the weaning of the steroid back to his usual dose without a problem. He has continued to spit up pretty regularly despite an increase in his anti-reflux medication. We've made an appointment to see the GI doctor again at the end of the month and hopefully she'll be able to help us figure out how to stop the reflux/spitting up so that we don't risk another aspiration pneumonia. The surgery last December was supposed to prevent 90% of the reflux and spitting up, but doesn't seem to be as effective now as it was last winter. We'll keep you posted on what we find out.
We're also focusing on a few things in Mason's development in the coming months. This week, we are going to start working with an Early Childhood Development teacher to help us improve Mason's communication and cognitive skills. At nearly 18 months, Mason should be able to use some sign language and have more words in his vocabulary (still really only saying Mama and dog). Hopefully, with the teacher's guidance, we can help improve Mason's skills so we can better understand how to care for him. Mason also continues to lag behind in his gross and fine motor skills. He has made tremendous improvement through the summer, but has a long way to go to catch up. We will continue to work with his home physical therapist and see the PT in the clinic regularly to get more and more ideas of how to help his motor development as well.
It seems there is always something to be focusing on or working on, but when I think back to where we were at this time last year, I'm amazed at how far we've come. This weekend, last year, we did our first trial run at a vacation. We spend 1 1/2 days in Central Oregon and had to come home emergently because Mason's oxygen need went up too high. He was spitting up 2-3 times per day and his feeding tube (through his nose at the time) was coming out that many times, too. He was way too skinny and had recently been diagnosed with "failure to thrive" (I don't think you can say that anymore - now he's just a chunky monkey!!). Looking back, he was still so sickly. He was so weak. He is so much stronger and more resilient today. Its amazing what a difference a year makes!
Mason has completely recovered from his aspiration pneumonia and has been doing fairly well with his oxygen need. We were so thankful that he responded well to the antibiotic and steroid burst, and even more thankful that he tolerated the weaning of the steroid back to his usual dose without a problem. He has continued to spit up pretty regularly despite an increase in his anti-reflux medication. We've made an appointment to see the GI doctor again at the end of the month and hopefully she'll be able to help us figure out how to stop the reflux/spitting up so that we don't risk another aspiration pneumonia. The surgery last December was supposed to prevent 90% of the reflux and spitting up, but doesn't seem to be as effective now as it was last winter. We'll keep you posted on what we find out.
We're also focusing on a few things in Mason's development in the coming months. This week, we are going to start working with an Early Childhood Development teacher to help us improve Mason's communication and cognitive skills. At nearly 18 months, Mason should be able to use some sign language and have more words in his vocabulary (still really only saying Mama and dog). Hopefully, with the teacher's guidance, we can help improve Mason's skills so we can better understand how to care for him. Mason also continues to lag behind in his gross and fine motor skills. He has made tremendous improvement through the summer, but has a long way to go to catch up. We will continue to work with his home physical therapist and see the PT in the clinic regularly to get more and more ideas of how to help his motor development as well.
It seems there is always something to be focusing on or working on, but when I think back to where we were at this time last year, I'm amazed at how far we've come. This weekend, last year, we did our first trial run at a vacation. We spend 1 1/2 days in Central Oregon and had to come home emergently because Mason's oxygen need went up too high. He was spitting up 2-3 times per day and his feeding tube (through his nose at the time) was coming out that many times, too. He was way too skinny and had recently been diagnosed with "failure to thrive" (I don't think you can say that anymore - now he's just a chunky monkey!!). Looking back, he was still so sickly. He was so weak. He is so much stronger and more resilient today. Its amazing what a difference a year makes!
This is one of my favorite pictures of Mason from September 2008
I took this one this morning right after Mason woke up. Don't you just love the hair!?!
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