27 May 2013
Memorial Day 2013
We had an excellent Memorial Day today, which just so happened to fall on mine and Dustin's 7th wedding anniversary. We spent the day with our families and friends and attended parades in both Wooster and Nashville. Matthew was really interested in the parade this year (last year he was only 9 months old) and he waved and in his sweet, soft voice called "hi" to many of the folks in vehicles, members of the marching bands and especially to the horses. Luke was too small to notice much of the parade and he was happy to be snuggled regardless of his surroundings. It's hard to not get caught up in the patriotism of the day and I was brought to tears during the parade in Wooster when a man dressed in black (following a float with names of fallen soldiers posted to a simple board) read the names aloud from a book. It's hard to imagine living in a country that didn't offer the rights, liberties and safety that we are afforded here in the United States. I am so grateful to the men and women who have, are or will serve in the Armed Forces and especially to those who have paid the ultimate sacrifice for my freedom.
26 May 2013
This Week: A Medical Review Wrap Up
Whew. What a week it's been for doctor's appointments. I have procrastinated writing this update because I knew there would be so much thought process required for me to recall all of the details. I think I'm going to attempt to just stick to the facts (as much as possible) for the update...
Ear, Nose & Throat - 2nd Opinion
We traveled to Dublin on Wednesday for a second opinion from an ENT within the Nationwide Children's (Columbus) network. This doctor was a referral by a new friend in our local community. He completed a nasal scope on Luke and believes that he may have a small amount of laryngomalacia, however with the absence of him having a stridor, he has ordered that he have a fluroscopy completed next week to obtain a better appreciation of what's happening inside Luke's airways. He recommended that we complete a bronchial scope prior to Luke having open heart surgery to validate he will be able to tolerate and more easily come off of the ventilator when the time comes.
Neurology - EEG and Brain Ultrasound
Because Luke has been overusing his right hand and also has had some staring spells (which I think may have been more from just being startled or possibly because he was working to focus his eyes), his Neurologist ordered an EEG and Brain Ultrasound. Both of those were completed this week and fortunately they both were considered to be within normal ranges and negative for a prior infantile stroke and / or infantile spasms.
Cardiology
Following a heart catheterization last month, Luke's cardiologist at The Cleveland Clinic has recommended that we postpone his open heart surgery to repair his AV Canal until he is 18-24 months old. Because the heart is a major organ, we have been in the process of seeking a couple of second opinions... we have obtained one from Boston Children's Hospital and will be obtaining another next week from Nationwide Children's in Columbus. The consultation with Boston was merely sending them his records electronically and having them complete an evaluation based upon the images from his heart cath, echocardiograms as well as his clinical notes. Boston (the number one pediatric cardiology center in the US) is recommending that we elect to have his surgery when he is between 8 -10 months. They believe that he has a touch of pulmonary hypertension which if left untreated will potentially cause irreversible damage to his lungs. I felt like they are throwing a wrench in our plans since we've spent the last few weeks accepting the longer term surgery plan, which really became "worry about it next year" in my mind, so it's a bit hard to stomach the idea that it could still happen in calendar year 2012. We have decided to wait and see what the cardiology team at Nationwide has to say next week before we make any final decisions. More to come on this topic next week I guess....
Hemotology - Follow Up
On Thursday, we went to Cleveland for a follow up with Luke's hematologist. She ordered another CBC and it showed us that Luke's Absolute Neutrophil Count (ANC) was up to 1100. A normal ANC is 1500, but 1100 is within an acceptable and healthy range. We have agreed to a monthly blood draw to check Luke's CBC once per month for the next few months.
This may be TMI (because it's about baby poop) , but it's from a conversation thread I started on a closed Facebook group that I'm a part of for moms of babies born in 2012 and 2013 with Down Syndrome. I'm saving it here, because it's easy to lose stuff on Facebook and I'd like to be able to come back to this later as we get further down the road with his ANC and his stinky, shiny poop problems... (for my 12/13 moms, hope you don't mind me sharing this... I made your names generic to protect your privacy).
Me: I should also add that we had it tested for blood and it was negative.
Mom 1: Check thyroid!
Me: We did thyroid this week and it was normal. His poop almost looks like meconium except he is 5 months old. It sounds like he could have too much iron based on my research, we are going to stop his vitamins for a few days to see if that makes a difference...
Mom 2: My daughter has green poop almost always. She gets half breastmilk, half formula and still has seeds. Occasionally, she will get mustard yellow, but it's almost always light green and it stinks!I would also say that her poop smells worse than my toddler who is on all kinds of solids, but I think it's because hers is so liquid so I spend more time wiping.
Mom 3: Well that pretty much described my son's poo for the last 6 months. He would go almost 5 days without pooping and we are down to every 3 days. Dr prescribed lactoloose but I haven't given it to him since he's gotten better. I can always tell when he is ready to poop cuz he starts to grunt and his gas is awful. Lol solids have helped but I have bananas and it stopped him up! The only thing my dr said to watch for if he is in pain when he poops.
Me: Luke is only going once every 3 to 5 days too and also has really fowl gas... Like its so bad it's almost embarrassing... How old is your little guy?
Mom 3: Just turned 8 mo today. It's smells like a messy diaper then I check and nothing! Lol
Mom 4: Kristen, I think your little man is a mirror to my son ...neutropenia and all. Right around the same age as your little guy my son's poop turned what I called black. We had it tested for blood three separate occasions, iron twice and all negative. Then gastro just blew me off. My uncle told me to have them check for a fatty acid malabsorption if it was "greasy" which it sometimes was (he is internal med md) but I couldn't get anyone to test for that since they said he was gaining weight he couldn't have malabsorption. Which I think u can but no one would listen. We just saw gasrto yesterday for other issues but she is testing brodys pancreatic function because there is a condition in which the pancreas isn't doing what it should with enzymes that can cause cyclic neutropenia and " greasy/oily" stools. Maybe check ok that. Good luck. Hope they listen to u!!
Me: Our hematologist suggested the malabsorption possibility for greasy stools, but he is also gaining weight and tracking well on the growth chart so we haven't gotten too concerned... He seems to be thriving in all other areas (although he does have AV canal). Do you know the name of the test for pancreatic function?
Mom 4: I don't off had but I can get into my son's chart and can look but it might be a few days. I will let u know
Me: @ Mom 4 speaking of neutropenia, we saw hematology this week and his ANC was up to 1100... Maybe he is cyclic? We decided to follow with a monthly draw for a while to see what happens....
Mom 4: Yeah my son has always been up and down. We did draws every three-four weeks for a bit. He ranged from like 3000 when he was sick and fighting something before to now this 320 so not doing so hit fighting this time. His " normal" is around 700-800. They told me to officially classify him as cyclic they had to draw twice a week for several weeks/ months but they unofficially classified him because be has had so many cbcs over the months they got a good picture that he goes up and down
Mom 5: We had the exact same issue and were super-worried. I cut dairy/ switched him to soy and it continued. Finally got him on nutramigen and he's 10x better...we suspect he has a severe milk and soy allergy. He also had a terrible rash, bloating, and vomiting, all of which improved with the hypoallergenic formula. Have you tried changing his diet?
Mom 4: We were already on nutramigen with our son and then switched to the good awful expensive neocate. For our son it didn't matter but we are still on the neocate and I am paving almost 40 per small can :0
Ear, Nose & Throat - 2nd Opinion
We traveled to Dublin on Wednesday for a second opinion from an ENT within the Nationwide Children's (Columbus) network. This doctor was a referral by a new friend in our local community. He completed a nasal scope on Luke and believes that he may have a small amount of laryngomalacia, however with the absence of him having a stridor, he has ordered that he have a fluroscopy completed next week to obtain a better appreciation of what's happening inside Luke's airways. He recommended that we complete a bronchial scope prior to Luke having open heart surgery to validate he will be able to tolerate and more easily come off of the ventilator when the time comes.
Neurology - EEG and Brain Ultrasound
Because Luke has been overusing his right hand and also has had some staring spells (which I think may have been more from just being startled or possibly because he was working to focus his eyes), his Neurologist ordered an EEG and Brain Ultrasound. Both of those were completed this week and fortunately they both were considered to be within normal ranges and negative for a prior infantile stroke and / or infantile spasms.
Cardiology
Following a heart catheterization last month, Luke's cardiologist at The Cleveland Clinic has recommended that we postpone his open heart surgery to repair his AV Canal until he is 18-24 months old. Because the heart is a major organ, we have been in the process of seeking a couple of second opinions... we have obtained one from Boston Children's Hospital and will be obtaining another next week from Nationwide Children's in Columbus. The consultation with Boston was merely sending them his records electronically and having them complete an evaluation based upon the images from his heart cath, echocardiograms as well as his clinical notes. Boston (the number one pediatric cardiology center in the US) is recommending that we elect to have his surgery when he is between 8 -10 months. They believe that he has a touch of pulmonary hypertension which if left untreated will potentially cause irreversible damage to his lungs. I felt like they are throwing a wrench in our plans since we've spent the last few weeks accepting the longer term surgery plan, which really became "worry about it next year" in my mind, so it's a bit hard to stomach the idea that it could still happen in calendar year 2012. We have decided to wait and see what the cardiology team at Nationwide has to say next week before we make any final decisions. More to come on this topic next week I guess....
Hemotology - Follow Up
On Thursday, we went to Cleveland for a follow up with Luke's hematologist. She ordered another CBC and it showed us that Luke's Absolute Neutrophil Count (ANC) was up to 1100. A normal ANC is 1500, but 1100 is within an acceptable and healthy range. We have agreed to a monthly blood draw to check Luke's CBC once per month for the next few months.
This may be TMI (because it's about baby poop) , but it's from a conversation thread I started on a closed Facebook group that I'm a part of for moms of babies born in 2012 and 2013 with Down Syndrome. I'm saving it here, because it's easy to lose stuff on Facebook and I'd like to be able to come back to this later as we get further down the road with his ANC and his stinky, shiny poop problems... (for my 12/13 moms, hope you don't mind me sharing this... I made your names generic to protect your privacy).
Me: I should also add that we had it tested for blood and it was negative.
Mom 1: Check thyroid!
Me: We did thyroid this week and it was normal. His poop almost looks like meconium except he is 5 months old. It sounds like he could have too much iron based on my research, we are going to stop his vitamins for a few days to see if that makes a difference...
Mom 2: My daughter has green poop almost always. She gets half breastmilk, half formula and still has seeds. Occasionally, she will get mustard yellow, but it's almost always light green and it stinks!I would also say that her poop smells worse than my toddler who is on all kinds of solids, but I think it's because hers is so liquid so I spend more time wiping.
Mom 3: Well that pretty much described my son's poo for the last 6 months. He would go almost 5 days without pooping and we are down to every 3 days. Dr prescribed lactoloose but I haven't given it to him since he's gotten better. I can always tell when he is ready to poop cuz he starts to grunt and his gas is awful. Lol solids have helped but I have bananas and it stopped him up! The only thing my dr said to watch for if he is in pain when he poops.
Me: Luke is only going once every 3 to 5 days too and also has really fowl gas... Like its so bad it's almost embarrassing... How old is your little guy?
Mom 3: Just turned 8 mo today. It's smells like a messy diaper then I check and nothing! Lol
Mom 4: Kristen, I think your little man is a mirror to my son ...neutropenia and all. Right around the same age as your little guy my son's poop turned what I called black. We had it tested for blood three separate occasions, iron twice and all negative. Then gastro just blew me off. My uncle told me to have them check for a fatty acid malabsorption if it was "greasy" which it sometimes was (he is internal med md) but I couldn't get anyone to test for that since they said he was gaining weight he couldn't have malabsorption. Which I think u can but no one would listen. We just saw gasrto yesterday for other issues but she is testing brodys pancreatic function because there is a condition in which the pancreas isn't doing what it should with enzymes that can cause cyclic neutropenia and " greasy/oily" stools. Maybe check ok that. Good luck. Hope they listen to u!!
Me: Our hematologist suggested the malabsorption possibility for greasy stools, but he is also gaining weight and tracking well on the growth chart so we haven't gotten too concerned... He seems to be thriving in all other areas (although he does have AV canal). Do you know the name of the test for pancreatic function?
Mom 4: I don't off had but I can get into my son's chart and can look but it might be a few days. I will let u know
Me: @ Mom 4 speaking of neutropenia, we saw hematology this week and his ANC was up to 1100... Maybe he is cyclic? We decided to follow with a monthly draw for a while to see what happens....
Mom 4: Yeah my son has always been up and down. We did draws every three-four weeks for a bit. He ranged from like 3000 when he was sick and fighting something before to now this 320 so not doing so hit fighting this time. His " normal" is around 700-800. They told me to officially classify him as cyclic they had to draw twice a week for several weeks/ months but they unofficially classified him because be has had so many cbcs over the months they got a good picture that he goes up and down
Mom 5: We had the exact same issue and were super-worried. I cut dairy/ switched him to soy and it continued. Finally got him on nutramigen and he's 10x better...we suspect he has a severe milk and soy allergy. He also had a terrible rash, bloating, and vomiting, all of which improved with the hypoallergenic formula. Have you tried changing his diet?
Mom 4: We were already on nutramigen with our son and then switched to the good awful expensive neocate. For our son it didn't matter but we are still on the neocate and I am paving almost 40 per small can :0
Cute Little Bums
Shameless plug in favor of cloth diapering... This diaper is a Bumgenius 4.0, shown in a fun print called Irwin. We have a couple in this print and since the boys were both wearing one at the same time, I attempted to get them on the floor together to take some photos. Matthew is just too busy to sit still long enough for me to get many worthwhile shots, but still I thought I'd share the few I captured. I think it's really cool that one diaper style can be versatile enough for us to use with both a 5 month old and with a 22 month old (especially considering their differences in size/weight and level of activity). We have been at cloth diapering for probably at least 3 weeks now and I'm happy to say that we haven't had any issues with leaking.
Don't these two have just the cutest little bums?
Don't these two have just the cutest little bums?
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| Bumgenius 4.0 worn by 5-Month-Old Luke |
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| Bumgenius 4.0 worn by 22-Month-Old Matthew |
25 May 2013
Mommy's Little Farmers
We visited a friend's Jersey farm today and since "barn" clothes seemed pretty appropriate (and we had some in the right size), I dressed Luke up in some Carhartts for the occasion. He just looked too cute for me to pass up the photo opp!
And for fun... since this outfit was a hand-me-down from big brother Matthew... here are some photos of him wearing it when he was 4 months old...
P.S. I'm happy to report that I think my photography skills have improved some since then too!
22 May 2013
Luke is 5 Months Old!
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| Check out all of my new red hair! |
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| Gearing up for the cutest pouty face ever... |
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| Making the cutest pouty face ever! |
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| Mom, seriously. Enough with the camera! |
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| Aren't those just the sweetest lips? |
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| He's pretty much mastered Tummy Time |
20 May 2013
At peace
I know I'm not supposed to compare, but I keep seeing all of these babies who are close in age to Luke and they appear to be ahead of him with their gross motor skills. I know I don't have a reason to be sad, but still... In some ways I am. He's working so hard. He has a lot of persistence and stamina and even while working hard, he rarely loses his big gummy grin. On the surface I know this is our reality, I know Luke will get there in his own time, but its still hard to think that my sweet baby isn't keeping pace with others his age. Living life with Luke is teaching me a greater patience than I ever knew existed. He is teaching me about what it really means to live to your greatest potential and regardless of where he finishes each day's race, its amazing how he seems to be at peace with his progress. I'm not one to keep score. I'm not one to judge. And most days I'm content... On nights like tonight when I feel anxious about what our future holds, I will remind myself to take my cues from our special gift. Our life will be a good life.
19 May 2013
Feeding Baby Brother
Matthew noticed Luke hadn't completely finished his bottle this afternoon so while Luke was practicing tummy time, Matthew took the bottle to him so he could finish it. He even sat with him for probably close to five minutes while he coaxed him to eat the final ounce. It's really fun to watch Matthew play the role of "big brother"!
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