Brigham Robert Brady - born March 20, 2012 - 6 lbs 15 oz, 20 in.
Saturday, March 24, 2012
Sunday, March 18, 2012
Playing
Since we had time to just chill we stayed with Jon's family for a few weeks. Here are a few pictures from going to the park one day.
Friday, March 9, 2012
SMA....Spinal Muscular Atrophy
So I am pretty slow in getting around to writing this post. I have had so many people ask about it, I've been wanting to write it on the blog. But I've also re-written it in my head a million times. I think last I left off, we were scheduled to have the EMG done for Benson. We had test results saying it wasn't muscular dystrophy, but not much else. We did the EMG and the doctor commented that he was textbook SMA. We drew some blood and waited three LONG weeks for test results to come back, then another week to get "research level" details. Positive for SMA with three back-up copies of SMN2 gene. The back-up copies give you a clue as to the severity of the disease. Type 1 will have as little as one copy and type 3 will have five or more. So Benson is considered a strong type 2. When I talked with the SMA nurse, I told her we wanted to get in to meet with the SMA team ASAP because I am now full term in this pregnancy and baby could be making a debut anytime. We were able to get in pretty quick. I feel like they really pulled some strings to make it happen.
So let me explain SMA a little, or at least what I understand so far. I am still sort of grappling at everything there is to learn. SMA is a genetic disease. It is autosomal recessive, meaning that both parents have to be carriers. It is estimated that 1 in 40 are carriers of the disease and 1 in 6,000 babies have the disease. I guess that still makes it pretty rare, but I was kind of surprised I had never even heard of this disease. I mean, I've heard of other diseases that seem even more rare. So what is it? It is a neuromuscular disease. His muscles are actually fine, albeit weak. The motor neurons however, break down and the messages just don't get to the muscles. Sadly, we all know too well with muscles, you use it or lose it. His sensory neurons however, are unaffected. He feels pain, hot, cold, and is definitely ticklish. The disease is progressive, with most strength lost in the first 30 months and then a plateau. The disease will spread to his intercostal muscles, the muscles between ribs that assist in breathing and eventually cause breathing difficulty.
So....meeting with the SMA team.....
We started out having an eval with the physical therapist. She was super positive and made me feel really good about Benson's strength. She said there is another boy, about his same age, size, and strength that she wanted us to meet and have Benson try his equipment. He has a vest, braces, stander, and wheelchair. We still haven't met them, but we are getting something set up for possibly this Monday. But the physical therapist pointed out that we really have no idea what Benson is capable of. He could possibly walk, he just have to keep working with him and keep trying.
Second, we met with Dr Swoboda who is the SMA specialist at Primary Childrens. She wanted to do a CMAP, which looks at his neurons and gives a baseline reading of how many he has. From there, they can re-evaluate every now and then and see disease progression. This involved having to give him versed, which he hated. This test was similar to the EMG, where they put sensors on his hand and administer tiny shocks to the neurons. They are also able to "hear" his muscles. Benson did okay with the test, considering his current dread of doctors. He hates doctors right now, he even threw a fit getting weighed. Not a good sign. The doctor was also concerned about Benson's considerable off-the charts low-weight. So they took some blood from his femoral vein to test his amino acids and fatty acids. This was a chore, again. Benson has hard veins to draw from for some reason. After that, they wanted to show us how to use a machine called a "cough assist." This was probably the most traumatic of the day. It's basically a machine that forces air into the lungs and then forces it out. It is especially helpful when kids with SMA have colds, because they can't cough productively. You can use the cough assist and then suction out whatever it pulls from the lungs. You have to put a mask over their nose and mouth and hold it there while the air is forced in and out. Even with the versed still in effect, Benson threw an absolute fit. It was traumatic for all of us. The doctors recommend using this machine twice a day for a few breaths. It helps to keep their alveoli open and their oxygen saturation high. We have to work with our pediatrician to get it approved through insurance. Along with a suction and a pulse oximeter. We can put that on him at night, when he is most likely not getting enough oxygen to see where he is at.
The nurse also discussed meeting with a pulmonologist and then getting referred to do a sleep study. I'm not exactly sure how they would do that on a toddler, but then they would know whether or not he needs to be on bipap at night. Bipap are those incredibly uncomfortable looking machines that also force air. This will take months to get approved so it probably won't happen before we leave Utah. But they want to try anyway, it's always worth a try, right? So three hours later, we were done meeting with the neurologist. We were also supposed to meet with the genetics counselor and the dietician but we were completely out of time and Benson was completely out of sorts. I had gone from really positive about things with the physical therapist, to feeling more than overwhelmed with all the equipment he "needs." In just three hours I had gone from feeling that he was completely normal, just a little weaker than most (okay so a lot weaker) to wondering how I was going to handle three. I was feeling like his condition was worse than I had thought. He felt like he would never have a normal life and would be considered "medically fragile" by everyone.
So since this appointment, I have been in contact with the dietician and the genetics counselor. The genetics counselor had amazing news for us. That is that any more kids we have with SMA will most likely also have three back-up copies of the SMN2 gene. This means, Jon and I most likely would not have a type 1 baby. Three back-up copies can look different in every child though. Benson is a stronger type 2 so we could have a weaker type 2, the same, or even stronger still. But I was just relieved to find out that chances are small of having type 1.
We had to keep a three day food journal for Benson to give to the dietician for evaluation. Hopefully she has some good ideas to help get some weight on the poor guy. Whenever I look at pictures of him with all his chub, I can't help but wonder how he lost so much weight so quickly.
I can't express how much I feel like our family has been blessed. Don't get me wrong, life is stressful right now, and so up in the air and crazy. But it is amazing to me how everything always works out for the best. It is really trying my faith and causing me to put my trust in the Lord in a way I have never had to do before in my life. I try not to worry about how I am going to handle three kids under three, one of him is slightly more "needy." I really do feel like we were supposed to have this baby now. For whatever reason, this baby is coming exactly when our family needs them. I won't pretend it isn't going to be hard and there won't be days I'll cry like a baby myself because it is so hard. But I do have that assurance that this is what is best for our family and for some reason it's how our family should be.
The other crazy antics going on right now are Jon's clinical schedule. We left Denver the last Friday of February. We were supposed to start up in Logan the following Monday but Jon got an email that weekend saying Logan wasn't ready. It would probably be a week. That week came and went and Logan still wasn't ready. It has been nice for Jon to have some time off, (if you can call it that, now he just spends hours and hours studying). The last word we got Jon will start in Logan next Thurs, March 15. And then we will most likely be in Logan through April. May? Well, that's a little far out for us to be informed. We might be in Salt Lake but we also might go to Florida or even Missouri. Having a plan would just make things too easy, wouldn't it.
So since Jon has all this time off, it would be perfect timing to have a baby, right?! Yes, well baby has other plans. So far, nothing. I am sure I will go into labor March 15 just because that would probably be the most inconvenient day possible. I think at this point, I feel like I would want to have this baby before March 14 or not until the very end of March. That would give Jon a week or two to get settled in at Logan before he had to "ditch" out for that wife of his that refuses to be induced. Guess we'll see.
Speaking of babies, we need to get a good double stroller. We are leaning towards the Delta LX umbrella stroller. Anyone ever tried this one or have another that they really like? We need portability and convenience. We have the Chariot for outdoor activities, like jogging and biking.
I have also been considering getting the Fisher Price Newborn Sleeper. I keep hearing that babies sleep amazingly well in these. I need something that this baby can sleep well in, and that won't take up lots of space since space is a luxury we don't have. Anyone try one of these?
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So let me explain SMA a little, or at least what I understand so far. I am still sort of grappling at everything there is to learn. SMA is a genetic disease. It is autosomal recessive, meaning that both parents have to be carriers. It is estimated that 1 in 40 are carriers of the disease and 1 in 6,000 babies have the disease. I guess that still makes it pretty rare, but I was kind of surprised I had never even heard of this disease. I mean, I've heard of other diseases that seem even more rare. So what is it? It is a neuromuscular disease. His muscles are actually fine, albeit weak. The motor neurons however, break down and the messages just don't get to the muscles. Sadly, we all know too well with muscles, you use it or lose it. His sensory neurons however, are unaffected. He feels pain, hot, cold, and is definitely ticklish. The disease is progressive, with most strength lost in the first 30 months and then a plateau. The disease will spread to his intercostal muscles, the muscles between ribs that assist in breathing and eventually cause breathing difficulty.
So....meeting with the SMA team.....
We started out having an eval with the physical therapist. She was super positive and made me feel really good about Benson's strength. She said there is another boy, about his same age, size, and strength that she wanted us to meet and have Benson try his equipment. He has a vest, braces, stander, and wheelchair. We still haven't met them, but we are getting something set up for possibly this Monday. But the physical therapist pointed out that we really have no idea what Benson is capable of. He could possibly walk, he just have to keep working with him and keep trying.
Second, we met with Dr Swoboda who is the SMA specialist at Primary Childrens. She wanted to do a CMAP, which looks at his neurons and gives a baseline reading of how many he has. From there, they can re-evaluate every now and then and see disease progression. This involved having to give him versed, which he hated. This test was similar to the EMG, where they put sensors on his hand and administer tiny shocks to the neurons. They are also able to "hear" his muscles. Benson did okay with the test, considering his current dread of doctors. He hates doctors right now, he even threw a fit getting weighed. Not a good sign. The doctor was also concerned about Benson's considerable off-the charts low-weight. So they took some blood from his femoral vein to test his amino acids and fatty acids. This was a chore, again. Benson has hard veins to draw from for some reason. After that, they wanted to show us how to use a machine called a "cough assist." This was probably the most traumatic of the day. It's basically a machine that forces air into the lungs and then forces it out. It is especially helpful when kids with SMA have colds, because they can't cough productively. You can use the cough assist and then suction out whatever it pulls from the lungs. You have to put a mask over their nose and mouth and hold it there while the air is forced in and out. Even with the versed still in effect, Benson threw an absolute fit. It was traumatic for all of us. The doctors recommend using this machine twice a day for a few breaths. It helps to keep their alveoli open and their oxygen saturation high. We have to work with our pediatrician to get it approved through insurance. Along with a suction and a pulse oximeter. We can put that on him at night, when he is most likely not getting enough oxygen to see where he is at.
The nurse also discussed meeting with a pulmonologist and then getting referred to do a sleep study. I'm not exactly sure how they would do that on a toddler, but then they would know whether or not he needs to be on bipap at night. Bipap are those incredibly uncomfortable looking machines that also force air. This will take months to get approved so it probably won't happen before we leave Utah. But they want to try anyway, it's always worth a try, right? So three hours later, we were done meeting with the neurologist. We were also supposed to meet with the genetics counselor and the dietician but we were completely out of time and Benson was completely out of sorts. I had gone from really positive about things with the physical therapist, to feeling more than overwhelmed with all the equipment he "needs." In just three hours I had gone from feeling that he was completely normal, just a little weaker than most (okay so a lot weaker) to wondering how I was going to handle three. I was feeling like his condition was worse than I had thought. He felt like he would never have a normal life and would be considered "medically fragile" by everyone.
So since this appointment, I have been in contact with the dietician and the genetics counselor. The genetics counselor had amazing news for us. That is that any more kids we have with SMA will most likely also have three back-up copies of the SMN2 gene. This means, Jon and I most likely would not have a type 1 baby. Three back-up copies can look different in every child though. Benson is a stronger type 2 so we could have a weaker type 2, the same, or even stronger still. But I was just relieved to find out that chances are small of having type 1.
We had to keep a three day food journal for Benson to give to the dietician for evaluation. Hopefully she has some good ideas to help get some weight on the poor guy. Whenever I look at pictures of him with all his chub, I can't help but wonder how he lost so much weight so quickly.
I can't express how much I feel like our family has been blessed. Don't get me wrong, life is stressful right now, and so up in the air and crazy. But it is amazing to me how everything always works out for the best. It is really trying my faith and causing me to put my trust in the Lord in a way I have never had to do before in my life. I try not to worry about how I am going to handle three kids under three, one of him is slightly more "needy." I really do feel like we were supposed to have this baby now. For whatever reason, this baby is coming exactly when our family needs them. I won't pretend it isn't going to be hard and there won't be days I'll cry like a baby myself because it is so hard. But I do have that assurance that this is what is best for our family and for some reason it's how our family should be.
The other crazy antics going on right now are Jon's clinical schedule. We left Denver the last Friday of February. We were supposed to start up in Logan the following Monday but Jon got an email that weekend saying Logan wasn't ready. It would probably be a week. That week came and went and Logan still wasn't ready. It has been nice for Jon to have some time off, (if you can call it that, now he just spends hours and hours studying). The last word we got Jon will start in Logan next Thurs, March 15. And then we will most likely be in Logan through April. May? Well, that's a little far out for us to be informed. We might be in Salt Lake but we also might go to Florida or even Missouri. Having a plan would just make things too easy, wouldn't it.
So since Jon has all this time off, it would be perfect timing to have a baby, right?! Yes, well baby has other plans. So far, nothing. I am sure I will go into labor March 15 just because that would probably be the most inconvenient day possible. I think at this point, I feel like I would want to have this baby before March 14 or not until the very end of March. That would give Jon a week or two to get settled in at Logan before he had to "ditch" out for that wife of his that refuses to be induced. Guess we'll see.
Speaking of babies, we need to get a good double stroller. We are leaning towards the Delta LX umbrella stroller. Anyone ever tried this one or have another that they really like? We need portability and convenience. We have the Chariot for outdoor activities, like jogging and biking.
Thursday, February 16, 2012
Bitter
I'm feeling a little bitter today. Last night we watched home movies and it just happened that the first tape we could come up with here in Denver was right around the time Vanessa was learning to walk. I had forgotten how much fun it is to watch them take those steps into independence and become little toddlers. It made me feel like my son was being short changed. Then this morning I took the kids to the mall where they have indoor play toys. I felt that bit of anger growing inside again as kids younger than him were wondering around, playing on the toys. I avoided talking to any parents because I didn't want anyone to ask how old Benson was. Immediately following that question is always a comment about him walking. I haven't come up with a good response yet. It's not like I can say "he's just not interested yet." Because, he is very interested. But he never will. Do I say that? My son will never walk. It's not embarrassing or anything, it just makes my heart hurt for my little man. And kind of angry at my genes.
On a happier note, the kids are getting better. No more fevers, coughs mostly gone and so are most of the yellow bougars (I don't know how to spell that). And here are some funny things Vanessa has said lately.
~As we were driving out to the Denver airport, passing expansive fields of white, "Where are all the polar bears, mommy?"
~One morning Vanessa insisted that she be called Brooklyn (her cousin) and she kept asking me all Brooklyn's family members names. Benson was Drew and I was Nicole.
~She talks in her "daddy voice" and "papa voice"
~Benson was crying on the floor while I ran to the bathroom. Vanessa walked over and rubbed his back and sang Twinkle, Twinkle Little Star to him.
~Vanessa woke up really early one morning crying. "My teeth hurt mommy, I need my toothbrush." Me: "Your teeth hurt? Is it your lips? Do you want chapstick?" Vanessa: "No. I want chocolate hearts." And then she was asleep again.
~When we got home today she said she wanted to wear her purple nightgown with her Rapunzel hair and watch Rapunzel.
On a happier note, the kids are getting better. No more fevers, coughs mostly gone and so are most of the yellow bougars (I don't know how to spell that). And here are some funny things Vanessa has said lately.
~As we were driving out to the Denver airport, passing expansive fields of white, "Where are all the polar bears, mommy?"
~One morning Vanessa insisted that she be called Brooklyn (her cousin) and she kept asking me all Brooklyn's family members names. Benson was Drew and I was Nicole.
~She talks in her "daddy voice" and "papa voice"
~Benson was crying on the floor while I ran to the bathroom. Vanessa walked over and rubbed his back and sang Twinkle, Twinkle Little Star to him.
~Vanessa woke up really early one morning crying. "My teeth hurt mommy, I need my toothbrush." Me: "Your teeth hurt? Is it your lips? Do you want chapstick?" Vanessa: "No. I want chocolate hearts." And then she was asleep again.
~When we got home today she said she wanted to wear her purple nightgown with her Rapunzel hair and watch Rapunzel.
Monday, February 13, 2012
Hotel Life
Vanessa literally started coughing on the drive here. She got a nasty cold that is still lingering a bit. And then Benson caught it. His cold isn't as bad, it's the darn fever that he gets with it. It seems like Benson is more prone to getting fevers. I can't recall Vanessa ever having a fever. I wonder if this is true for all kids? Anyway, other than dealing with sickness, this is how we spend our days.
We couldn't decide what to do on Saturday when Daddy was around to play, so we drove around a bit and then ended up at the downtown Aquarium. It was a bit of a splurge (okay, a big splurge) but the kids are obsessed with fish and I think they both loved it. It's kind of mesmerizing watching fish swim around for some reason.
This fish was our favorite of the day. I haven't ever seen one quite like it. Pretty cool, isn't it?
Monday, February 6, 2012
A New Look at Life
Um, did anyone else notice the widget on the side of my blog? Am I REALLY having a baby in six weeks?! For my physical comfort, it would be nice if she came early. But because I am no where near ready for this, late would be okay too. I can't believe how fast this pregnancy has gone.
So the kids and I came out to Denver for the next three weeks. We are currently at the hotel where Jon has been staying the past month. We find out tonight if an apartment will rent to us for only three weeks. If not, we're going to stay here. I feel kind of white trash living in a hotel. And I say living because it's not like we have a home to go to somewhere else. We're pretty much transients. Oh well, such is the life.
The last couple days before leaving Utah I was stressed to the max. I was ornery, grumpy, and moody. But just talking with Jon on the drive out to Denver made me feel better. I can't believe how much I have missed being together as a family. I realized I missed Jon, but it was like peace came back into my mind and I felt like I could cope with everything again just because I was with him. I am so blessed to have him and even more blessed to get to live in the same state with him again. I feel like Jon makes me a more positive person. And I worry less. I was always such a planner and spontaneity was not my forte. I think we are a good balance for each other. Granted, we would both love a little more stability right now, but Jon makes it all feel like it's more of an adventure and less of something to be dreaded. Having said that, I have started looking at all the positives lately.
~We are having a baby! When is that NOT exciting?! And if all these tests come back positive, we have a 25% percent chance of having another baby with SMA. So, difficult decision of whether or not or when to get pregnant...avoided!
~We are together as a family. Pros all around for obvious reasons.
~We are in a studio hotel that has a full size fridge and a stovetop, way better than a mini fridge and just a microwave. Though we do have a microwave. And, we were also able to push the two double beds together so we have one ginormous beds. The kids think it's great and it opened up the room to have more space to play. A lot of hotels bolt their beds down so you can't do that.
~We have a job! Wow, that feels amazing.
~Vanessa is completely healthy and showing no signs of SMA. She is hilarious and keeps us on our toes, laughing and shaking our heads along the way.
~Benson is going to have a lot of physical difficulties but man that kid is smart. He amazes me all the time and I know that he will shine in so many ways. He is going to have so many talents, and so many amazing things.
So the kids and I came out to Denver for the next three weeks. We are currently at the hotel where Jon has been staying the past month. We find out tonight if an apartment will rent to us for only three weeks. If not, we're going to stay here. I feel kind of white trash living in a hotel. And I say living because it's not like we have a home to go to somewhere else. We're pretty much transients. Oh well, such is the life.
The last couple days before leaving Utah I was stressed to the max. I was ornery, grumpy, and moody. But just talking with Jon on the drive out to Denver made me feel better. I can't believe how much I have missed being together as a family. I realized I missed Jon, but it was like peace came back into my mind and I felt like I could cope with everything again just because I was with him. I am so blessed to have him and even more blessed to get to live in the same state with him again. I feel like Jon makes me a more positive person. And I worry less. I was always such a planner and spontaneity was not my forte. I think we are a good balance for each other. Granted, we would both love a little more stability right now, but Jon makes it all feel like it's more of an adventure and less of something to be dreaded. Having said that, I have started looking at all the positives lately.
~We are having a baby! When is that NOT exciting?! And if all these tests come back positive, we have a 25% percent chance of having another baby with SMA. So, difficult decision of whether or not or when to get pregnant...avoided!
~We are together as a family. Pros all around for obvious reasons.
~We are in a studio hotel that has a full size fridge and a stovetop, way better than a mini fridge and just a microwave. Though we do have a microwave. And, we were also able to push the two double beds together so we have one ginormous beds. The kids think it's great and it opened up the room to have more space to play. A lot of hotels bolt their beds down so you can't do that.
~We have a job! Wow, that feels amazing.
~Vanessa is completely healthy and showing no signs of SMA. She is hilarious and keeps us on our toes, laughing and shaking our heads along the way.
~Benson is going to have a lot of physical difficulties but man that kid is smart. He amazes me all the time and I know that he will shine in so many ways. He is going to have so many talents, and so many amazing things.
Tuesday, January 24, 2012
Repurposing, Ducks Don't Fly South and Car Tracks
Vanessa loves silky nightgowns. It is literally all she wants to sleep in. Her favorite is her "horsey nightgown" which we have all seen way too much of. I made her two new nightgowns recently. Both were from the same tutorial but I did slightly different things on each. I like different parts of both. Put them together and it would be a pretty decent nightgown. I got the purple fabric from WalMart for $3.75 and the flowered one was a robe at DI for $5. It's chemise silk so I feel like that was pretty cheap. Plus I didn't have to hem because I used the already hemmed edges. Bonus!
I also made Vanessa this Rapunzel wig. Her cousin Brooklyn had one so I decided to give it a try. The yarn nearly made me crazy trying to get it all cut and braided but she loves it so it was worth it. Poor Benson kind of gets the shaft. I haven't made anything for him. I just get more excited about girly stuff. Sorry bud.
My parents laughed at me when I said we were going to feed the ducks. Ducks fly south for the winter, right?! Wrong! Not if they are domesticated ducks anyway. These guys are fed year round, I am sure, so food is not a problem for them.
Benson having a stare down with one of the geese. He usually loves throwing the bread but he just held on to it and stared at them this time. Possibly because they just kept getting closer and closer and were really big.
My mom is amazing at spoiling her grandchildren. I kind of feel like I get spoiled too because it gives us new things to play with. One thing she has always done is buy four of the really cool toys. If she thinks the kids will really likes something, she will get one for each family. She had quite a few of these stored up for us since ours are about three years behind the older group of grandkids. Today we busted out one of these stored up treasures. Vanessa has played with her cousin's before and loves it. She was so excited to have one of her own! Of course she believes that is "hers" and not "ours" but we are working on that.
Benson enjoyed the mini screwdriver kit I used to get the battery compartment open for a good ten minutes before he got into the car business.
The track is kind of wiggley and the cars run on battery around and around. They go really fast for just one little AA battery.
Sunday, January 22, 2012
Random New-ness
- Jon is in Denver all week but comes and visits every weekend. I am staying with my parents and trying to get through doctor appointments. It is HARD being apart so much. I think the circumstances right now make it even harder.
- Jon got me a sewing machine for Christmas and I am fully embraced all those sewing/repurposing "pins" I have been wanting to do. Pictures forthcoming...they wouldn't load today. Don't I have the best husband ever?! I can never think of such awesome gifts for him.
- Vanessa is obsessed with princesses. Her current favorite is Rapunzel. It was probably Belle first, then Cinderella and now Rapunzel. I think she currently likes Rapunzel because she wears a purple dress and I just made her a purple nightgown/dress up as well as a Rapunzel wig.
- Benson is a talking machine. This kid amazes us all. He is starting to spit out two word phrases on occassion. He's only 16 months. It's crazy. And he repeats nearly anything, if he is in the mood and if he is not feeling pressure to perform.
- Vanessa loves to play dress up with her cousins. If they dress ups sort of fit (within a size or two) and if they resemble a princess outfit.
- Benson loves animals, knows all the animals by name, and all the sounds that I know. If anyone knows what sound a zebra or giraffe makes, please tell!
- Vanessa still loves her animals, littlest pet shop. She now has about a million and a tree house for them to play in. Her favorites have very original names, like purple cat, pink cat, octopus, and shark.
- Benson is turning out to be a pretty good eater. He likes a much larger variety of food than Vanessa did at his age, though this last week has been rough with a bout of the flu hitting both kids.
- Vanessa is currently an awful eater. She goes through phases and right now is a not-really-eating phase. I think she had waffles and milk for three days straight. Obviously, her current favorite is waffles.
- Jon is getting more and more comfortable working with peds. He has been in Denver for three weeks (that's it?!) and this is purely a pediatric rotation. He feels like he has things down now and is even enjoying it. He will be in Denver until the end of February.
- I am almost 33 weeks pregnant. Everything is going great, I am huge and have gained WAY more weight than I would have liked to at this point. I blame it on Christmas eating. At the last ultrasound, we got some great pics of the baby's profile. He or she definitely looks like one of our kids. Apparently we have a cookie cutter recipe. There was also some small evidence of hair growing on their bitty head.
- Benson has a preference for boys. He loves his dada, papas, uncles and Clay over everyone. But he still does love his mama.
- Vanessa is still full of energy, like she always has been. My father-in-law pointed out that she never walks anywhere. She is always running or leaping, hopping, dancing, something with a bounce and more energy in an hour than I have in a day.
- Benson has a twinkle in his eye and a charm about him that melts everyone. There is just something about that little man and the way he looks at people. He's pretty easy to fall in love with. Watch out ladies!
- Vanessa is in the age of saying all kinds of funny things. I wish I were better about writing them down because she cracks me up all the time. Some of our funniest conversations happen while at the potty. She doesn't always want me to come, but when she does, she likes to talk to me about what she's doing and always asks me if I can hear it too. When she was sick with the flu after she threw up for the first time in her poor life, literally, she turned to me and said "I don like that." She still talks about her tummy ache and how she kept "spitting" in the potty.
- Benson is sort of starting to sleep better. He was doing great in St Louis, sometimes sleeping all the way through the night, but all the moving around mixed him up again and he was waking up sometimes every hour! I was DYING. But, we're all doing better and I am just existing sleeping squished between two very warm bodies. I have very little motivation with Jon gone and so much moving to get them in their own beds. We have taken Benson off milk, which seems to have made a huge difference with his waking and gas. So it appears that he possibly has a low tolerance for lactose? Not fully lactose intolerant because he still has other forms of dairy. Apparently this is possible, who knew.
Snow Day
This is not our recent snow storm. This was the first one of the year, clear back before Jon had to leave for Denver. It was the first time the kids had been in snow, that they could remember anyway. We had a lot of fun that lasted about an hour, perfect for me. I remember spending hours and hours playing in the snow as a kid. But luckily, most things don't last for hours and hours as a toddler :) Hours and hours making snowmen at seven months pregnant, did not appeal. But I can do an hour.
Here is Vanessa, anticipating stepping into the snow. She was so excited to go out and then as soon as she got to the edge of the snow, she stood there for a good minute. I would have loved to be able to read her mind at that minute. I wonder what a toddler thinks of an experience like this, something so new and different.
Jon with the kids and our niece and nephew. They all had fun sledding. Vanessa didn't really love the tube, I think it was faster than she liked. But she did love the slower sled. Benson had a couple turns too. I couldn't quite read his emotion but Jon said he did seem to like it the first couple times (I only saw him the last time and by then he was tired and kinda cranky).
Benson crashed during the snowman making, so I held him and took pictures. It was a fabulous excuse. I love holding sleeping babies and taking pictures. Double win!
Hard at work making that snowman. Vanessa also learned how to make snow angels and especially loved eating the snow. It was all she wanted to do. What kid doesn't love eating snow?!
Monday, January 9, 2012
For My Yoke is Easy and My Burden is Light
I haven't blogged about our little Benson's physical condition much because I have been waiting for his appointment with the neurologist. So, I guess it makes the most sense to start back at the beginning. We first started to notice something wasn't right when he was about nine months. He had been scooting around for almost a month but still wasn't using his legs to help scoot. We also noticed that he wasn't bearing weight or pulling up to furniture. I scheduled his well child check and we brought this up with the pediatrician. She said she wouldn't say she wasn't concerned, but that we should watch it and possibly do physical therapy if it hadn't improved by 12 months. So, between 9 months and 12 months we moved to Utah (temporarily). So, I took Benson in to Vanessa's old pediatrician just days before turning 12 months to get a second opinion. He wasn't too concerned. Benson is very age appropriate in every way except that he doesn't use his legs. Makes things kind of confusing. So he recommended that we do one of three things 1)see a neurologist 2)physical therapy 3)wait and see if he catches up on his own. Our situation of moving around the country for the next year made things even more difficult. How do you follow up with physical therapy or a neurologist if you don't live somewhere for more than a month?! I explained this to the pediatrician and because it didn't seem that pressing, he just left it up to us and told me to call if we needed any referrals. About two weeks later, we left for Kansas City, MO. We were there for two weeks and then we drove to the other side of the state and planted in St. Louis for three months. I had decided that I would call First Steps (the community development intervention program) while in St. Louis and see how that went and then we would go from there. Jon and I were going for a walk one day with the kids and he mentioned he had been talking with a doctor that day about muscular dystrophy, particularly duchenne muscular dystrophy (DMD). It's a pretty agressive form that manifests itself at a young age. I had a distinct feeling right then that I needed to call the neurologist. And for a long time, I felt like it meant that he had DMD. I scheduled his appointment the next day.
November was a rough month to say the least. I spent hours after everyone had gone to bed sobbing over any information I could find on the internet. I searched everything from neuromuscular to hyptonia, to brain, spinal, etc. I finally had to stop.
First Steps came and did a full evaluation. Ironically, he was advanced in cognitive skills by several months and less than half his age in gross motor skills. He qualified for weekly physical therapy, at no cost to us. Sometimes those government programs really are a blessing :) The physical therapist came to our house and worked on his balance, trying to improve his weight bearing, overal development of his leg and core muscles as well as massage. December was a much happier month. I was feeling more able to deal with the reality that something wasn't right. That something was wrong, though I still wasn't sure to what extent.
Right before Christmas, we left St Louis and came back to Utah. Originally, the kids and I had planned to go with Jon to Denver, where his next rotation is. But with Benson needing regular physical therapy and having appointments set up with the neurologist and Shriners (we applied for Shriners and he was accepted as a patient there as well), we didn't see how that would work anymore. Jon stayed with us through the holidays and then left for Denver. The soonest we could get in to see the neurologist was Jan. 5, and this was scheduling clear out in October! On Jan 5, my parents and Vanessa and I all took Benson to the neurologist. I doubt they usually get such a large crew. Ha ha. My dad took notes, my mom entertained Vanessa, and I sat with Benson for his evaluation. I thought I had been thorougly prepared for his appointment. But, turns out I was unable to answer a lot of questions, including family history (mostly Jon's). I also continued to think of things I had left out over the next few days. That is so frustrating. The doctor felt fairly sure that it was not muscular dystrophy but wanted to do the blood test anyway, just to be sure. She also didn't feel it was brain or spinal. She decided to do an EMG, or electric diagnostic. She will put little electrical impulses on his legs and test whether or not his neurons are firing correctly. She will also put a needle into his muscle to test the neurons. She said that usually they use general anesthesia for this procedure, but was willing to do versed only for Benson because he isn't very wiggly. Versed is not a pain medicine, it is only a sedative. So he will feel it and he won't like it, but it will eliminate the risks associated with general. She left it up to me to decide and I wished that Jon were there to decide. He's the one that has been studying this for the last year! Finally, I decided to just go with the versed. We scheduled the appointment for January 30, again the soonest we could get in. We headed over to the lab that day though and did the blood test for MD. I called in just today and got the results, everything is normal.
I'm very unsure of what the future holds for our little Benson. The doctor mentioned that her first impression is Spinal Muscular Atrophy (SMA). I remember talking with Jon awhile ago and one thing he said was "let's just hope it isn't SMA." The doctor suggested NOT googling SMA because there are several subtypes, and Benson would be a type 2 or 3. Type 1, they are usually diagnosed at birth and immediately put on a ventilator. They usually don't live past 2 or 3 years. I don't know what type 2 or 3 would look like, but I imagine it isn't much better. I decided not to google until we know for sure. No sense worrying about something that may not even come to be. It is most likely something neuromuscular. Charcot Marie Tooth (CMT) is another one that closely resembles Benson's symptons and is a lot less horrifying. He would most likely be in a wheelchair, but it would never affect his organs so he could still live a full and "normal" life. While it isn't life-pressing that we get an answer now, it would be nice to know and move forward with the facts. I just really hope that this appointment on Jan 30 gives us some good answers, if not a definitive one.
Surprisingly, I feel like I am doing well. I can't speak for Jon, because I haven't asked. But I feel like this has come on slowly enough that I have had time to adjust and grapple with it all. I have always been amazed by people when in times of trial, they can be positive. How can you be positive when life is throwing you wicked hard curve balls?! I kind of felt like when we first came out here that our family wasn't sure if I was going to be a complete wreck or not. At first, they seemed a little tender, just trying to be sensitive. Things have normaled out now and they have realized that I can have casual conversations about it and I'm not moping around like life is miserable. We move on and deal with life, because what other choice do you have? But I can honestly say that I have felt the sustaining power of Christ every step of the way. I have read the scriptures my entire life, but it has taken me 25 years to finally understand one of them in particular. I guess that is the whole point of trials, to teach us and cause us to grow. But I finally understand how things that seem so hard are possible with the Savior.
Matthew 11:29-30 "Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light"
November was a rough month to say the least. I spent hours after everyone had gone to bed sobbing over any information I could find on the internet. I searched everything from neuromuscular to hyptonia, to brain, spinal, etc. I finally had to stop.
First Steps came and did a full evaluation. Ironically, he was advanced in cognitive skills by several months and less than half his age in gross motor skills. He qualified for weekly physical therapy, at no cost to us. Sometimes those government programs really are a blessing :) The physical therapist came to our house and worked on his balance, trying to improve his weight bearing, overal development of his leg and core muscles as well as massage. December was a much happier month. I was feeling more able to deal with the reality that something wasn't right. That something was wrong, though I still wasn't sure to what extent.
Right before Christmas, we left St Louis and came back to Utah. Originally, the kids and I had planned to go with Jon to Denver, where his next rotation is. But with Benson needing regular physical therapy and having appointments set up with the neurologist and Shriners (we applied for Shriners and he was accepted as a patient there as well), we didn't see how that would work anymore. Jon stayed with us through the holidays and then left for Denver. The soonest we could get in to see the neurologist was Jan. 5, and this was scheduling clear out in October! On Jan 5, my parents and Vanessa and I all took Benson to the neurologist. I doubt they usually get such a large crew. Ha ha. My dad took notes, my mom entertained Vanessa, and I sat with Benson for his evaluation. I thought I had been thorougly prepared for his appointment. But, turns out I was unable to answer a lot of questions, including family history (mostly Jon's). I also continued to think of things I had left out over the next few days. That is so frustrating. The doctor felt fairly sure that it was not muscular dystrophy but wanted to do the blood test anyway, just to be sure. She also didn't feel it was brain or spinal. She decided to do an EMG, or electric diagnostic. She will put little electrical impulses on his legs and test whether or not his neurons are firing correctly. She will also put a needle into his muscle to test the neurons. She said that usually they use general anesthesia for this procedure, but was willing to do versed only for Benson because he isn't very wiggly. Versed is not a pain medicine, it is only a sedative. So he will feel it and he won't like it, but it will eliminate the risks associated with general. She left it up to me to decide and I wished that Jon were there to decide. He's the one that has been studying this for the last year! Finally, I decided to just go with the versed. We scheduled the appointment for January 30, again the soonest we could get in. We headed over to the lab that day though and did the blood test for MD. I called in just today and got the results, everything is normal.
I'm very unsure of what the future holds for our little Benson. The doctor mentioned that her first impression is Spinal Muscular Atrophy (SMA). I remember talking with Jon awhile ago and one thing he said was "let's just hope it isn't SMA." The doctor suggested NOT googling SMA because there are several subtypes, and Benson would be a type 2 or 3. Type 1, they are usually diagnosed at birth and immediately put on a ventilator. They usually don't live past 2 or 3 years. I don't know what type 2 or 3 would look like, but I imagine it isn't much better. I decided not to google until we know for sure. No sense worrying about something that may not even come to be. It is most likely something neuromuscular. Charcot Marie Tooth (CMT) is another one that closely resembles Benson's symptons and is a lot less horrifying. He would most likely be in a wheelchair, but it would never affect his organs so he could still live a full and "normal" life. While it isn't life-pressing that we get an answer now, it would be nice to know and move forward with the facts. I just really hope that this appointment on Jan 30 gives us some good answers, if not a definitive one.
Surprisingly, I feel like I am doing well. I can't speak for Jon, because I haven't asked. But I feel like this has come on slowly enough that I have had time to adjust and grapple with it all. I have always been amazed by people when in times of trial, they can be positive. How can you be positive when life is throwing you wicked hard curve balls?! I kind of felt like when we first came out here that our family wasn't sure if I was going to be a complete wreck or not. At first, they seemed a little tender, just trying to be sensitive. Things have normaled out now and they have realized that I can have casual conversations about it and I'm not moping around like life is miserable. We move on and deal with life, because what other choice do you have? But I can honestly say that I have felt the sustaining power of Christ every step of the way. I have read the scriptures my entire life, but it has taken me 25 years to finally understand one of them in particular. I guess that is the whole point of trials, to teach us and cause us to grow. But I finally understand how things that seem so hard are possible with the Savior.
Matthew 11:29-30 "Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light"
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