Yesterday was a rather weird day for me emotionally. Most of the time I don't feel bad about Spencer's condition, but every now and then I get a little twinge of sadness. A friend had posted a link to a blog about a baby with a serious heart condition. He has been sick since birth and there is no guarantee he will make it. Things were very touch and go for him yesterday. Crazy as it may sound those are the things that make me thank God that Spencer "only" has dwarfism. I mean really it could be so much worse. Yes, we almost lost Spence last month because of his foramen magnum compression and there will no doubt be more medical complications, but Spencer is going to be okay. That's what I have to cling to. My little guy really is going to be alright.
But at the same time it can be tough. Little things seem to slap me in the face. We were swimming at the YMCA last night and there was a little girl the same age as Spence. The same age mind you and she was standing there (with her daddy's help of course) and jumping into the pool. But little Spencer can't even bear any weight on his legs, not even for a minute, because of his hypotonia. He'll get there someday, but it's gonna be a while. I don't know why exactly, but it made me sad that Spence wasn't able to do it, too. With that big personality and big spirit, his body still denied him. It was no big deal really, right? So what if she could stand there and Spence couldn't. But there was something melancholy about it for me and I remind myself that it's okay to feel that way. They're just feelings and I will NOT expect myself to be Prozac happy that he has dwarfism. But I am deep down in the very depths of my soul happy we have Spencer in our lives, no Prozac needed thank you.
Tuesday, July 28, 2009
Tuesday, July 14, 2009
Cowboy boots, strut what ya got...
Letting your kids be who they are can be tough, especially when it's the polar opposite of who you are. I'll be the first to admit that this is a challenge for me. The first time I remember really giving in was when the twins were about two. They had gotten cowboy boots as a birthday gift and they were in LOVE. Well, let's just say I'm not a cowboy boots kind of girl. I'm more the high heels type, if you know what I mean. I vividly remember how much I hated those boots!! But the first time I gave in and let them wear them out somewhere was a life changer. Watching them strut around in those boots with their little girlie dress no less, melted my heart!
And with five kids God is constantly finding new was to stretch me in this area. Take my nine year old for instance who loves his 30+ stuffed animals. He is seriously pushing my anti-clutter buttons-hard!! Then there's the girls who love garage sale knicknacks. A gene they definitely did not get from me. Last, but not least is Jordan. My beautiful, baby girl who loves to dress like Punky Brewster (remember the old tv show?) A typical Jordan ensemble might be a crazy printed dress, mismatched striped tights that clash, of course with her ladybug mud boots, topped off with about 10 pieces of jewelry and her orange hat. I've learned to shrug off the funny looks at the grocery store. I know they are wondering if I was the one who dressed her like that.
As different as they are though, I'm also reminded of the pieces of me they have in them, too. I catch Jake with his nose in a book and smile knowing I'd be doing the same thing if I could. Genna who loves everything organized, yep me again! Grace who cries along with me watching sappy movies or listening to tender songs. Then there's Spencer who would eat all day if he could-definitely inherited from me!! My kids are a mix of old and new and I wouldn't have it any other way! I've realized that God made them each unique in so many ways and I'm not about to be the one to put out the fire!
And with five kids God is constantly finding new was to stretch me in this area. Take my nine year old for instance who loves his 30+ stuffed animals. He is seriously pushing my anti-clutter buttons-hard!! Then there's the girls who love garage sale knicknacks. A gene they definitely did not get from me. Last, but not least is Jordan. My beautiful, baby girl who loves to dress like Punky Brewster (remember the old tv show?) A typical Jordan ensemble might be a crazy printed dress, mismatched striped tights that clash, of course with her ladybug mud boots, topped off with about 10 pieces of jewelry and her orange hat. I've learned to shrug off the funny looks at the grocery store. I know they are wondering if I was the one who dressed her like that.
As different as they are though, I'm also reminded of the pieces of me they have in them, too. I catch Jake with his nose in a book and smile knowing I'd be doing the same thing if I could. Genna who loves everything organized, yep me again! Grace who cries along with me watching sappy movies or listening to tender songs. Then there's Spencer who would eat all day if he could-definitely inherited from me!! My kids are a mix of old and new and I wouldn't have it any other way! I've realized that God made them each unique in so many ways and I'm not about to be the one to put out the fire!
So, here are the rest of the details of our scare with Spencer. After the code was called we were taken to the ER. Spencer had "come to", but was still not himself. I just wanted to see him smile and then I would know he was okay. He is such a charmer and ALWAYS smiling. So, to see him lying there so lethargic was very, very hard.
They decided to do the some basic, routine tests-blood work, x-ray to check for pneumonia, and a nasal swab for RSV. We were almost immediately told that Spencer had an ALTE (an apparent life threatening event). I was nauseous hearing that Spence had something happen that had quote "threatened his life". In the meantime, they called over to the Skeletal Dysplaisa Center where was Spencer was scheduled for an appointment. The specialists there had a pretty good idea of what had happened. It seems many kids with Spencer's form of dwarfism have something called Foramen Magnum Compression or in simpler terms his skull was pinching off his spinal cord. Apparently 2-5% of babies die from this complication. It's still difficult to think we almost lost him right there in the parking garage.
We weren't in the ER long before they decided to move us to a room for the night. Spencer would have an MRI in the morning to confirm that he had the compression. By that night Spencer was pretty much back to himself, except with a lot of extras wires and monitors!!
Spencer slept pretty well that night, but mom and dad were another story! I don't think Scott and I slept at all that night. Every time a monitor beeped we practically knocked each other over getting to his crib.
Because of the MRI Spencer couldn't nurse after midnight and it was really hard for him. He was such a trooper and really hung in there! The MRI in and of itself was nerve racking. He would have to be put under for it and from what I had already read little people (lp's) need managed more during general anesthesia. One more thing to worry about!
It seemed like an eternity that he was gone during the MRI, but he came through it just great! He was so sweet when he woke up! What a trooper!!
We waited anxiously for the doctor to come in and tell us the results. Finally, the doc came in and asked us to come out to the nurses desk so he could show us the images from the MRI on the computer. Well, you didn't have to be a rocket scientist (or even a doctor-lol) to see right where his skull was pinching his spinal cord. He would need surgery, as soon as possible, to decompress the area. Basically, they would have to open him up from the base of the skull along the spine and remove the part of the skull pinching his spinal cord.
Needless to say, we would not be going home anytime soon. It was Friday and the soonest they could schedule the surgery for was Tuesday. It was going to take a major team of people for this surgery and that was the earliest they could get them assembled. So, until then Spence would have to be constantly monitored and we would have to pray he did not have another episode.
It was a long, uneventful next 4 days. We saw various doctors, including a few we had been scheduled to see that fateful Thursday. Spencer had x-rays called a Skeletal Survey and bloodwork done to see if he had the common mutation that caused his type of dwarfism.
I also learned that I was my child's advocate. So, whatever it took to get him the best care possible I was going to do it. I learned Spencer was a "hard stick" and to ask for the MedFlight/transport team to do any bloodwork and IV's. I learned that it was okay to ask the nurses to wait to do vitals when Spencer was nursing. I learned being an advocate meant not sleep much!
The day of Spencer's decompression surgery came and I had a great sense of peace. Don't get me wrong I was still anxious, but I knew we literally had hundreds, if not thousands, of people praying for him from coast to coast.
It was so hard to hand him over to the nurses in anesthesia though. After all we'd been through I guess I was scared to let him go. My awesome parents were there by our side and suggested we go to the cafeteria and try to relax. The funniest thing happened on the way there. We are rounding the corner and I see the neurosurgeon walking out of the cafeteria with a cup of coffee in hand! I'm thinking, "hey my kid is in surgery, aren't you suppose to be there too??!!" But it was weirdly reassuring that to us what was major surgery was no big deal to him.
So, here is the rest of our stay in a nutshell. The surgery went perfectly! The neurosurgeon's wonderful (and I do mean WONDERFUL!) nurse Renee said it couldn't have went any better. I told her that was because we had so many people praying and she said she knew that without me even telling her! I thought that was so amazing!! More amazing yet was that Spencer never cried after his surgery. We would fuss a little when we got hungry, but that was it. All the nurses commented that he was the calmest, best baby they'd ever seen. He could not have handled it any better. I know he handled it better than I would have!!
Three days later we were sent home! I'll admit it was little scary to leave the safety of the hospital. We'd had such a scare and I was operating on a serious lack of sleep, but I was so happy that our little guy was okay. One of the major hurdles of his condition was already down. It was hard to believe we'd only learned of his condition just 3 weeks earlier and he'd already been through so much.
They decided to do the some basic, routine tests-blood work, x-ray to check for pneumonia, and a nasal swab for RSV. We were almost immediately told that Spencer had an ALTE (an apparent life threatening event). I was nauseous hearing that Spence had something happen that had quote "threatened his life". In the meantime, they called over to the Skeletal Dysplaisa Center where was Spencer was scheduled for an appointment. The specialists there had a pretty good idea of what had happened. It seems many kids with Spencer's form of dwarfism have something called Foramen Magnum Compression or in simpler terms his skull was pinching off his spinal cord. Apparently 2-5% of babies die from this complication. It's still difficult to think we almost lost him right there in the parking garage.
We weren't in the ER long before they decided to move us to a room for the night. Spencer would have an MRI in the morning to confirm that he had the compression. By that night Spencer was pretty much back to himself, except with a lot of extras wires and monitors!!
Spencer slept pretty well that night, but mom and dad were another story! I don't think Scott and I slept at all that night. Every time a monitor beeped we practically knocked each other over getting to his crib.
Because of the MRI Spencer couldn't nurse after midnight and it was really hard for him. He was such a trooper and really hung in there! The MRI in and of itself was nerve racking. He would have to be put under for it and from what I had already read little people (lp's) need managed more during general anesthesia. One more thing to worry about!
It seemed like an eternity that he was gone during the MRI, but he came through it just great! He was so sweet when he woke up! What a trooper!!
We waited anxiously for the doctor to come in and tell us the results. Finally, the doc came in and asked us to come out to the nurses desk so he could show us the images from the MRI on the computer. Well, you didn't have to be a rocket scientist (or even a doctor-lol) to see right where his skull was pinching his spinal cord. He would need surgery, as soon as possible, to decompress the area. Basically, they would have to open him up from the base of the skull along the spine and remove the part of the skull pinching his spinal cord.
Needless to say, we would not be going home anytime soon. It was Friday and the soonest they could schedule the surgery for was Tuesday. It was going to take a major team of people for this surgery and that was the earliest they could get them assembled. So, until then Spence would have to be constantly monitored and we would have to pray he did not have another episode.
It was a long, uneventful next 4 days. We saw various doctors, including a few we had been scheduled to see that fateful Thursday. Spencer had x-rays called a Skeletal Survey and bloodwork done to see if he had the common mutation that caused his type of dwarfism.
I also learned that I was my child's advocate. So, whatever it took to get him the best care possible I was going to do it. I learned Spencer was a "hard stick" and to ask for the MedFlight/transport team to do any bloodwork and IV's. I learned that it was okay to ask the nurses to wait to do vitals when Spencer was nursing. I learned being an advocate meant not sleep much!
The day of Spencer's decompression surgery came and I had a great sense of peace. Don't get me wrong I was still anxious, but I knew we literally had hundreds, if not thousands, of people praying for him from coast to coast.
It was so hard to hand him over to the nurses in anesthesia though. After all we'd been through I guess I was scared to let him go. My awesome parents were there by our side and suggested we go to the cafeteria and try to relax. The funniest thing happened on the way there. We are rounding the corner and I see the neurosurgeon walking out of the cafeteria with a cup of coffee in hand! I'm thinking, "hey my kid is in surgery, aren't you suppose to be there too??!!" But it was weirdly reassuring that to us what was major surgery was no big deal to him.
So, here is the rest of our stay in a nutshell. The surgery went perfectly! The neurosurgeon's wonderful (and I do mean WONDERFUL!) nurse Renee said it couldn't have went any better. I told her that was because we had so many people praying and she said she knew that without me even telling her! I thought that was so amazing!! More amazing yet was that Spencer never cried after his surgery. We would fuss a little when we got hungry, but that was it. All the nurses commented that he was the calmest, best baby they'd ever seen. He could not have handled it any better. I know he handled it better than I would have!!
Three days later we were sent home! I'll admit it was little scary to leave the safety of the hospital. We'd had such a scare and I was operating on a serious lack of sleep, but I was so happy that our little guy was okay. One of the major hurdles of his condition was already down. It was hard to believe we'd only learned of his condition just 3 weeks earlier and he'd already been through so much.
Sunday, July 5, 2009
Can life get any crazier?
So, I start a blog and then I'm derailed! I'd planned on keeping up on this and not procrastinating (for once!). But then a 8 day hospital stay changed my plans. Yes, a 8 day hospital stay. We were planning on Spencer's first visit to the specialists at the Skeletal Dysplasia Center at Akron Children's hopsital. Spencer was getting fussy after being in the car way longer then we wanted to be. I checked on him and told him to hang in there because we were less than 10 minutes from the hospital. He was fussy, but he was fine.
We arrived at the hospital, parked in the parking deck and got Spencer out of the car. That moment turned out to be the most terrifying, awful moment of my life. I looked down and Spencer was pale, foaming at the mouth, not breathing and totally non-responsive. I starting yelling his name and Scott was pinching his leg, but nothing. Not one single thing to reassure us that our precious little guy was okay.
So, we ran into the hospital, but the floor we parked on actually entered the Professional Building, which is mainly just offices. I shouted to the first person I saw, "Do you work here?" She said no, but that the lady walking down the hall did. I called out to her and said, "We need help now! My son is not breathing and not responding!!" She stepped into one of the offices and called a code blue. Within minutes we had a slew of people surrounding us in response to the code being called. Thank God Spencer had started breathing again by this point. It was shallow and lethargic to say the least, but at least I saw some life in him again.
They rushed us over to the main part of the hospital to the ER. I was on the verge of throwing up or passing out, but I knew I had to keep it together. The details of the next 8 days will be in the next blog. But re-living this, even just to write in here, is almost too much. All I know is holding your lifeless child is an experience I wouldn't wish on even my worst enemy.
We arrived at the hospital, parked in the parking deck and got Spencer out of the car. That moment turned out to be the most terrifying, awful moment of my life. I looked down and Spencer was pale, foaming at the mouth, not breathing and totally non-responsive. I starting yelling his name and Scott was pinching his leg, but nothing. Not one single thing to reassure us that our precious little guy was okay.
So, we ran into the hospital, but the floor we parked on actually entered the Professional Building, which is mainly just offices. I shouted to the first person I saw, "Do you work here?" She said no, but that the lady walking down the hall did. I called out to her and said, "We need help now! My son is not breathing and not responding!!" She stepped into one of the offices and called a code blue. Within minutes we had a slew of people surrounding us in response to the code being called. Thank God Spencer had started breathing again by this point. It was shallow and lethargic to say the least, but at least I saw some life in him again.
They rushed us over to the main part of the hospital to the ER. I was on the verge of throwing up or passing out, but I knew I had to keep it together. The details of the next 8 days will be in the next blog. But re-living this, even just to write in here, is almost too much. All I know is holding your lifeless child is an experience I wouldn't wish on even my worst enemy.
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