Wednesday, August 22, 2012
Viva La Quinta
Tuesday, August 14, 2012
Benson's Story....a post for a friend
Benson was born at 38 ½ weeks gestation. It was a completely unmedicated, natural
birth. He was healthy and
beautiful. We requested to go home early
and were released from the hospital just 24 hours later. Benson was 6lbs. 15oz. at birth.
 |
| Birth day |
After just seven weeks, he had
gained four pounds! He was growing like
a little weed. The nurses at the
pediatrician’s office joked that he was soon going to be bigger than his older
sister, who is just 16 months older and on the small side.
 |
| Benson, 2 months |
Looking back, there were a few
indicators of problems long before we realized it. They were subtle, like a small decline in his
seventy-fifth percentile growth. Then
there was that time I held a friend’s baby, who was the same age as Benson; and
thought, this baby is really rigid, I
like how cuddly Benson is. He hit all his milestones within the range of
average. At eight months old he started
commando crawling. We called it his
wounded soldier scoot because he didn’t use his legs, at all.
 |
| Benson, 9 months |
 |
| Benson, 12 months |
In October of 2011, my husband and I were talking about possible diagnoses and I had the profound impression that something WAS wrong and I needed to do something now. The next day I scheduled an appointment with the neurologist and contacted Early Intervention to get physical therapy started. I called the neurologist in October and the soonest I could get an appointment was January.
November was a rough month for me. I spent countless hours researching, googling, and reading the same things over and over. Praying for an explanation other than a neuromuscular disease.
In January, we went to our inital consult with the neurologist. My parents came with me since my husband was unable to get work off. The doctor mentioned SMA but recommended NOT googling it. I actually listened for once. We were scheduled for an EMG three weeks later.
At the EMG, it showed that Benson was a classic case of SMA. The nerves responsible for sensation were responding appropriately but the nerves for motor skills were not. The doctor still would not say it was SMA for sure. She wanted to do genetic testing to confirm the diagnosis. The results came back about three weeks later, positive for SMN1 deletion.
The peak of Benson's strength was at around 12 months. Since that time, he has been gradually losing more and more. We are doing our best to keep his losses to a minimum. It feels like it is a constant battle against time and a nasty invisible disease.
There is a light inside Benson that draws people to him. He is a handsome little guy and a charmer. I have no doubt that, despite the physical limitations he may have, he WILL do great things in life.
Sunday, August 12, 2012
Down in Little Rock
Monday, August 6, 2012
Life with SMA
I mentioned in a previous post that before the kids and I left Utah we had a chance to meet a family that has two kids with SMA. It was so great to talk with their mom. She had great advice as well as encouragement. It is so weird to suddenly have this devastating disease in our lives. Even weirder is the fact that it is something I had never even heard of. Spinal Muscular....what?! Learning all the to-dos and NOT to-dos has been really stressful. There is also a mantra that I keep hearing from other SMA families that you should be proactive rather than reactive. Get bipap early, get a Gtube early because they will lose strength quick and things can go downhill quick. It has been really stressful and hard trying to decide all the right things to do for Benson. Another thing that was made even more poignant to me, was just how variable this disease really is.
To have this make sense, you have to know a little SMA basics. The gene affected by SMA is the SMN1 gene. When Benson was tested he results came back positive for SMN1 deletion, meaning that gene is not there. Instead, there is "backup copy" called the SMN2 gene. There are multiple copies of this gene, I believe up to 8 but don't quote me on that. Doctors can use how many backup copies a person has to classify their type (Ie SMA type 1 typically has 1 copy, type 2 typically have 2-4 copies). Clear as mud?!
These two kids were both very strong. The three year old boy could crawl around somewhat and get the toys he wanted. The five year old girl has learned to crawl upstairs! That is literally amazing to me. Both these kids have three SMN2 copies, same as Benson. Then today on a facebook SMA support group, I learned of a boy who could crawl until about four years and only has two copies. Some of you may remember the blog Avery's bucketlist about a little girl that was diagnosed at 3 three months with type 1. She died at just six months. But their as another girl on facebook with type 1 who is in her twenties.
So that only makes things harder. You just can't look at what someone else has done or what their life is like and know what to expect. The uknown is scary.
I still have days where I can't help but get teary eyed over Benson's uknown future. Will he be teased? How am I going to potty train him? Will he be embarrassed if I have to help him to the bathroom or shower, if Jon isn't available? Is he going to feel left out of all the things he can't do? Will he cry when the kids play football at recess and he is left out, again? Should I do homeschool or will public school be okay? What extracurricular activities will he be able to do? Will he have to have a trach? Will he still be able to talk after said trach? Will he be able to pass the sacrament? Will he be able to serve a mission? Get married?
If I think about it too much, the stress and worry is almost unbearable. My form of coping has almost been to not cope. To push it out of my mind and just go with the ride. Try to do as much for him as I can, let his life be as normal as it can be, and keep on keeping on.
After much debate over whether or not to document this, I have decided that I will. I want to know exactly where his strength is at given points so I can know whether it is getting better or worse. As of August 6, 2010, Benson is able to:
Sit independently. He does tip over so we have to make sure there is nothing nearby that could cause head injury. We use the bumbo anytime he wants to sit on elevated surfaces. He is still able to feed himself independently. His sippy cups are getting heavy and he sometimes needs help getting them to his mouth. However, once there, he can hold them up long enough to drink. He mostly eats with his hands as the utensils are heavy with food on them. But honestly, what two year old doesn't prefer eating with their hands?! He is standing with assistance and bracing. His longest stretch of continual standing was about 30 seconds. He can roll both tummy to back and back to tummy. He no longer uses this as a means of transportation however. I think this is because it's easier for us to do it for him and because once he is on his back or tummy, he can't get back into sitting position. He is great with his manual chair. He goes slow, but it's an amazing possibility for independence. He doesn't however, love to be in it. I think this is because our residences have not been very wheelchair friendly. We are hoping to change that here in about six months. Once in his wheelchair, he can get where he wants to be, but there isn't much for him to do. He can't bend down and get a toy off the floor for example. This gets extremely frustrating for him. We are looking into getting a service dog for some of these things. He has learned when lifting things to his mouth, or placing a toy kind of high, to brace his arm with his other hand. He most often uses his right arm and braces with his left. He can throw rocks in the water with a sideways throw.
He can still eat and swallow. He is extremely picky and is spitting things out more and more but he still is able to chew and swallow. His diet is mostly milk and pediasure but we are able to get a few things down him now and then. A Gtube is possibly in his near future, as much as I dread the thought.
His respiratory health is amazing. He doesn't belly breathe, which is great. His oxygen saturation is usually around 96. He hasn't had a sleep test, but we put the pulse ox on for a few naps and a full night and sent that in to the pulmonologist. For the duration of the night, he sats were only below 90 for two minutes. Most of the time, they were about 94-95. If they did drop, it was for less than ten seconds, totaling two minutes. He had a runny nose about a month ago but he healed quickly and there were no problems. Other than that I was scared to death, haha. His cough is extremely weak and not productive. He isn't currently doing the cough assist but it is something I plan to do once we are settled into Missouri.
In Utah, we were doing physical therapy twice a week with a home nursing program. I am really hoping to get him doing water therapy in addition to that and maybe even some horseback riding therapy. I think he would love both of those. But we will see what is available to us in Missouri. In this weird between spot we are in, we are doing as much PT ourselves and playing in the pool often as well. As I am sure is common, he doesn't love doing PT with us. I try to get him all psyched to stand and he'll agree and then once we start, he bails. We also have a stander that should be here the end of the month. We are hoping to work up to standing for at least an hour a day in addition to his therapies.
That about sums it all up. I am hoping here in about a year I can write this post again and say that so many of these are improved and he is stronger. I am hoping that he will learn to adapt and not rely on us to do so much for him. I am also hoping that we will have been able to adapt our home to him so that it's all that much easier for him to have some independence.
To have this make sense, you have to know a little SMA basics. The gene affected by SMA is the SMN1 gene. When Benson was tested he results came back positive for SMN1 deletion, meaning that gene is not there. Instead, there is "backup copy" called the SMN2 gene. There are multiple copies of this gene, I believe up to 8 but don't quote me on that. Doctors can use how many backup copies a person has to classify their type (Ie SMA type 1 typically has 1 copy, type 2 typically have 2-4 copies). Clear as mud?!
These two kids were both very strong. The three year old boy could crawl around somewhat and get the toys he wanted. The five year old girl has learned to crawl upstairs! That is literally amazing to me. Both these kids have three SMN2 copies, same as Benson. Then today on a facebook SMA support group, I learned of a boy who could crawl until about four years and only has two copies. Some of you may remember the blog Avery's bucketlist about a little girl that was diagnosed at 3 three months with type 1. She died at just six months. But their as another girl on facebook with type 1 who is in her twenties.
So that only makes things harder. You just can't look at what someone else has done or what their life is like and know what to expect. The uknown is scary.
I still have days where I can't help but get teary eyed over Benson's uknown future. Will he be teased? How am I going to potty train him? Will he be embarrassed if I have to help him to the bathroom or shower, if Jon isn't available? Is he going to feel left out of all the things he can't do? Will he cry when the kids play football at recess and he is left out, again? Should I do homeschool or will public school be okay? What extracurricular activities will he be able to do? Will he have to have a trach? Will he still be able to talk after said trach? Will he be able to pass the sacrament? Will he be able to serve a mission? Get married?
If I think about it too much, the stress and worry is almost unbearable. My form of coping has almost been to not cope. To push it out of my mind and just go with the ride. Try to do as much for him as I can, let his life be as normal as it can be, and keep on keeping on.
After much debate over whether or not to document this, I have decided that I will. I want to know exactly where his strength is at given points so I can know whether it is getting better or worse. As of August 6, 2010, Benson is able to:
Sit independently. He does tip over so we have to make sure there is nothing nearby that could cause head injury. We use the bumbo anytime he wants to sit on elevated surfaces. He is still able to feed himself independently. His sippy cups are getting heavy and he sometimes needs help getting them to his mouth. However, once there, he can hold them up long enough to drink. He mostly eats with his hands as the utensils are heavy with food on them. But honestly, what two year old doesn't prefer eating with their hands?! He is standing with assistance and bracing. His longest stretch of continual standing was about 30 seconds. He can roll both tummy to back and back to tummy. He no longer uses this as a means of transportation however. I think this is because it's easier for us to do it for him and because once he is on his back or tummy, he can't get back into sitting position. He is great with his manual chair. He goes slow, but it's an amazing possibility for independence. He doesn't however, love to be in it. I think this is because our residences have not been very wheelchair friendly. We are hoping to change that here in about six months. Once in his wheelchair, he can get where he wants to be, but there isn't much for him to do. He can't bend down and get a toy off the floor for example. This gets extremely frustrating for him. We are looking into getting a service dog for some of these things. He has learned when lifting things to his mouth, or placing a toy kind of high, to brace his arm with his other hand. He most often uses his right arm and braces with his left. He can throw rocks in the water with a sideways throw.
He can still eat and swallow. He is extremely picky and is spitting things out more and more but he still is able to chew and swallow. His diet is mostly milk and pediasure but we are able to get a few things down him now and then. A Gtube is possibly in his near future, as much as I dread the thought.
His respiratory health is amazing. He doesn't belly breathe, which is great. His oxygen saturation is usually around 96. He hasn't had a sleep test, but we put the pulse ox on for a few naps and a full night and sent that in to the pulmonologist. For the duration of the night, he sats were only below 90 for two minutes. Most of the time, they were about 94-95. If they did drop, it was for less than ten seconds, totaling two minutes. He had a runny nose about a month ago but he healed quickly and there were no problems. Other than that I was scared to death, haha. His cough is extremely weak and not productive. He isn't currently doing the cough assist but it is something I plan to do once we are settled into Missouri.
In Utah, we were doing physical therapy twice a week with a home nursing program. I am really hoping to get him doing water therapy in addition to that and maybe even some horseback riding therapy. I think he would love both of those. But we will see what is available to us in Missouri. In this weird between spot we are in, we are doing as much PT ourselves and playing in the pool often as well. As I am sure is common, he doesn't love doing PT with us. I try to get him all psyched to stand and he'll agree and then once we start, he bails. We also have a stander that should be here the end of the month. We are hoping to work up to standing for at least an hour a day in addition to his therapies.
That about sums it all up. I am hoping here in about a year I can write this post again and say that so many of these are improved and he is stronger. I am hoping that he will learn to adapt and not rely on us to do so much for him. I am also hoping that we will have been able to adapt our home to him so that it's all that much easier for him to have some independence.
Thursday, August 2, 2012
Seattle Road Trip
The trip started off with a LONG drive to Corvallis (14hours) that actually went fine. Minus the small scare that our car battery was dying, it ended up being a false alarm. We met up at my sister Carrie's house. Steph and her kids were already there so we chilled for an hour and then drove for yet another hour to the coast. It was beautiful. Hence, the picture over load.
The pictures with the rocky coast is the tide pool. We went at a higher low tide, so there wasn't as much rock as at a lower low tide. Still very cool though. We also went to the sandy beach for a bit. This was Newport.
We ate dinner at a local restaurant. They had the most amazing clam chowder I have ever had. Way better than San Fran.
We slept in a hotel in Corvallis that night and then drove to Portland the next morning. In Portland, we went straight to the zoo.
We slept in Portland that night and then drove up to Seattle the next morning. We met up with Ryan that night and went to dinner at the mall food court. It was actually plan B, because plan A didn't work out. But it was the most awesome idea ever. The kids were contained in a very nice kid's area and dinner was actually somewhat relaxing.
Our first day in Seattle we went to the Seattle Aquarium. It was fabulous. They had great touch pools with all kinds of sea life. We touched sea anemones, sea cucumbers, sea stars (aka star fish, though this is an outdated name and everyone should catch up on their biology, haha)
That night we went to a restaurant called Eat At Joes. They change theme every couple weeks, like menus, decor and everything. This visit they were a Texas theme. No one really loved their food, except the kids' mac and cheese was awesome. After dinner we went to a really cool park right on the coast. They had fun toys and then down a hill was the ocean. Pretty awesome. The shoreline was lined with these huge logs. Vanessa and my mom took a tumble on the stairs. Vanessa had a fat lip and scrapes on her poor lips, they healed surprisingly fast. Like days. My mom was a little more roughed up however and hers are still on the mend.
6 AM Random
It's 6am and I have been up since 3. Trust me, I would be sleeping if I had a choice in the matter. Benson fell asleep last night at 5pm (uh, should I mention it was in the bumbo?!) because I couldn't convince the kid to take a nap. I tried to wake him up around 6:30, to no avail. I was nervous he would wake up around 10, like he has done the two other times he missed his nap, and be up til 2am. When he kept on sleeping, I thought we were in the clear. Nope, he just decided to wake up at 3am, to keep us on our toes and make sure we still get just enough sleep to keep us functionally cranky. Fabulous. Oh, and since we are living in the hotel, he also woke up Brigham. It goes against his nature to be awake quietly. I just turned on Finding Nemo and decided I would update the blog rather than lay there and pretend to sleep. Vanessa, amazingly, can sleep through all the noise. I don't really know how that skill came about, but I love it.
Speaking of Vanessa, last night she was wired. At about 8:30 Jon and I started trying to get her to sleep. She was just bouncing off the walls like a crazy girl. She finally settled and asked me to sing her some songs. I laid down by her and started singing. After a little while she asked, "Mom, are you waiting for me to go to sleep?" "Yes," I said. "Oh." I continued singing for a couple more minutes and then she asks, "Mom, who are you singing to?" "To you." "But I'm already asleep!" Apparently she is just really good at having conversations in her sleep. After a few more minutes of wiggling, she really did fall asleep. Then Jon and I had twenty minutes of peace to talk about how crazy our lives are before Benson started talking in his sleep and wanting to be held.
Yes, you did read that last part right. We are with Jon. It's a long story how all the plans came to be made....and re-made....and re-made....oh, only like six times. But, the end result is a pretty good one. If we survive the next three weeks in a hotel, in Little Rock Arkansas, while they have the fifth hottest summer on record.
So, backtracking a bit here. The kids and I drove with my parents up to Oregon and Washington to see my sisters two weeks ago. That is a post all in itself involving lots and lots of pictures, but I'll save that for next time. While we were there though, the plans were laid for me and the kids to play out to Arkansas just five days after we got home from our vacation. That was a little crazy but I was able to get everything together. And I mean everything, since we won't be going back to Utah. I was even able to see all of Jon's family to say goodbye and meet a lady who has two kids with SMA.
Friday, August 27th, I set out at 6:30am with my dad and the kids for the airport. My dad helped us send our four suitcases, two car seats, one car seat base and a wheelchair with the curb check in. And I headed inside with two kiddos in the double stroller, Brigham in the Ergo, the infant car seat across the top, diaper bag on my back, snacks and blankets underneath, and Vanessa's "suitcase" in one hand. I was a spectical. I know I was, because I could hear the comments as I would walk by and see the looks on people's faces as they slowly moved out of my way. But, surprisingly, the flights went amazing. No serious breakdowns, no tantrums, and mostly sleeping; at least from the boys. And we couldn't have been happier to see Jon. And I think he was pretty excited to see us. We had a great weekend. Not that we did anything super special, just that we were a family again. Brigham has practically become a different baby in the last month and I was so excited for Jon to see him. Except that, somehow Brigham seems to know we are somewhere new. He hasn't been as giggly and smiley as he can be. But he is slowly coming around. Benson is being really needy. And Vanessa has been exponentially more wired. But heres to hoping things start looking up and we all adjust to the craziness. And here's to posts yet to come...with pictures.
Speaking of Vanessa, last night she was wired. At about 8:30 Jon and I started trying to get her to sleep. She was just bouncing off the walls like a crazy girl. She finally settled and asked me to sing her some songs. I laid down by her and started singing. After a little while she asked, "Mom, are you waiting for me to go to sleep?" "Yes," I said. "Oh." I continued singing for a couple more minutes and then she asks, "Mom, who are you singing to?" "To you." "But I'm already asleep!" Apparently she is just really good at having conversations in her sleep. After a few more minutes of wiggling, she really did fall asleep. Then Jon and I had twenty minutes of peace to talk about how crazy our lives are before Benson started talking in his sleep and wanting to be held.
Yes, you did read that last part right. We are with Jon. It's a long story how all the plans came to be made....and re-made....and re-made....oh, only like six times. But, the end result is a pretty good one. If we survive the next three weeks in a hotel, in Little Rock Arkansas, while they have the fifth hottest summer on record.
So, backtracking a bit here. The kids and I drove with my parents up to Oregon and Washington to see my sisters two weeks ago. That is a post all in itself involving lots and lots of pictures, but I'll save that for next time. While we were there though, the plans were laid for me and the kids to play out to Arkansas just five days after we got home from our vacation. That was a little crazy but I was able to get everything together. And I mean everything, since we won't be going back to Utah. I was even able to see all of Jon's family to say goodbye and meet a lady who has two kids with SMA.
Friday, August 27th, I set out at 6:30am with my dad and the kids for the airport. My dad helped us send our four suitcases, two car seats, one car seat base and a wheelchair with the curb check in. And I headed inside with two kiddos in the double stroller, Brigham in the Ergo, the infant car seat across the top, diaper bag on my back, snacks and blankets underneath, and Vanessa's "suitcase" in one hand. I was a spectical. I know I was, because I could hear the comments as I would walk by and see the looks on people's faces as they slowly moved out of my way. But, surprisingly, the flights went amazing. No serious breakdowns, no tantrums, and mostly sleeping; at least from the boys. And we couldn't have been happier to see Jon. And I think he was pretty excited to see us. We had a great weekend. Not that we did anything super special, just that we were a family again. Brigham has practically become a different baby in the last month and I was so excited for Jon to see him. Except that, somehow Brigham seems to know we are somewhere new. He hasn't been as giggly and smiley as he can be. But he is slowly coming around. Benson is being really needy. And Vanessa has been exponentially more wired. But heres to hoping things start looking up and we all adjust to the craziness. And here's to posts yet to come...with pictures.
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