Last month I posted about how we had gone Against Doctor's Orders by taking Nate off of his seizure medication last fall. The neurologist was not happy with me (even though we haven't seen a single staring spell since) and tried to reason with the defiant mom by saying we at least needed to do an EEG. If it came back normal or just slightly abnormal, no meds. If it came back like it did last year (no seizures but lots and lots of seizure activity that makes him highly susceptible to having a seizure), back on the meds he goes.
It was a "sleep deprived" EEG. And of course if the kid has to be sleep deprived, the parents do too. :) Actually, Blake kept him up until midnight, and I went to bed early and got him up a little after 4am. He was so confused and not happy with me. I just picked him up out of bed and carried him downstairs because I knew the screaming would commence and I didn't need both kids awake at 4am. He kept saying, "Wait! I'm not ready to wake up yet!" And for the next couple of hours, he said, "Oh, mama. I'm so sleepy." We watched a lot of train videos on my laptop. When I got him in the car to take him to the appointment, he said, "This car is so dark. Just right for a nap." I said, "Don't you fall asleep, mister!!!" I kept looking back at him in the rear view mirror, and one time he had his eyes closed. I said, "Nate!!! Wake up!" He said, "I'm awake. I'm just blinking, mama." No, he wasn't! The old "I'm just resting my eyes" excuse.
He sat in my lap in a big comfy recliner while she got all the glue and stuff on his head, and after she turned out the lights, he was out. I had nothing to do except watch the computer screen. I admit, I have no idea how to read an EEG (I'm pretty sure I can read a baby anatomy ultrasound and a CT scan though), but it didn't look good to me. There were lots of crazy looking lines, and every time the lines did something funny, the woman doing the test would look over at Nate, presumably to see if he was twitching or something. I never saw him do anything, but she looked like she was certain she would find something. Those blips happened a lot.
Of course she couldn't give me any results, and I had to wait a full week before calling for results. It turns out my subconscious really didn't want the results, because I forgot to call the next Monday. On Tuesday I left a message asking for the results. On Friday I realized I hadn't heard back so I called after hours and left another message. Then this morning I forgot my phone in the car when I went into work. I finally remembered it this afternoon, and when I went to get it, there was a voicemail. The voicemail was from Dr. Farber himself. Oh crap. It is never a good sign when the specialist himself calls you. I was certain he wanted to personally tell me, "Nanny nanny boo boo! Told ya so!"
I finally talked to him later this afternoon. He said .... the EEG looks the same as last year. Boo! BUT, he is fine with Nate not being on medication right now. Yay! He understands that we have not seen any seizures, and neither have his teachers. He wonders if this is just what Nate's brain looks like, with all the SB and hydro and all that stuff going on. I asked if it's possible that Nate is having mini-seizures all day long and that's what could be causing him to be so temperamental and agitated all the time. He said a) this is probably not what is making him agitated, and b) he was not saying that Nate was having seizures all day. His EEG's have not shown any seizures. They just show a lot of seizure "activity," which means he's highly susceptible to having seizures. So for now, no medication. But he has a "very low threshold" for putting Nate back on the meds. If we see anything twitchy, we are to let him know immediately, which of course I will do.
Of course I was hoping for a clean EEG, but I'm okay with this outcome.
Monday, March 28, 2011
Monday, March 21, 2011
Progress and perspective
My mom says I can pack more into a day than anyone she knows. And Friday was that kind of day.
It started with me taking Nate (and Georgia tagged along) to therapy. Every Friday morning he has back to back OT and PT, and during PT he rides the horse (hippotherapy). For the last couple of weeks we've had a substitute PT for one reason or another, and we had a very interesting conversation this time. She was taking a look at his braces, which are called SMOs and look pretty similar to this:
I can't tell about that one, but Nate's have a top strap around the ankle. He didn't use to have this top strap on his previous braces, but we noticed he was crouching a bit and bending his knees when standing still, so the PT thought this ankle strap would force his ankle a bit more still and make him stand up straighter. When he first got it, it was rubbing his ankle and making a place there, so the PT said to just leave it very loose. After that healed, I started strapping it tighter, thinking it would do its job that way. And it has--I really haven't noticed Nate crouching in the last several months. So apparently he has gotten stronger too. But a couple weeks ago, his regular PT told Blake that I was strapping that top strap too tight, that it needed to be lose. So on Friday when I was talking to the sub, I asked about this. If it's that loose, it's not even doing any good. Why not remove the strap? She agreed and said we could cut off the strap because it really doesn't look like he needs it anymore (after watching him run around without it strapped for awhile). Great! The less support, the better. I want Nate to be moving every single muscle that works, so we can get them stronger.
I was telling her about a night last week when Nate asked Blake to help him take his shoes off because he wanted to dance. Apparently his shoes were getting in the way, and he had some major dancing to get done. Nate can walk pretty well without his braces and shoes, and we like to give his feet that exercise (the braces stabilize his feet and ankle, so he can't move them much). But his feet pronate, which means he sort of stands on the insides of his feet a bit. Well Blake was watching him dance barefoot, and not only was he standing on the inside of his feet, but his left foot was so distorted that it looked like it was curving outward. It didn't look good. This PT said she understood we wanted him to be using those muscles, but he needs some support on his feet.
This is the way she explained it, which made total sense to me. You build strength from the top down. So first the hips, then the knees, then the ankles, then the feet. Well, we have worked on the leg above the ankle by strapping the ankle, and now it's time to strengthen the ankle. So we will need some side to side movement there that he can't do with his SMO on, but he will not be able to properly exercise his ankle if his foot is a mess. At first she suggested just a mid-rise shoe for him to wear around the house, but then she brought up a lower brace. He could wear this inside of a shoe, at home and maybe at PT sometimes, to stabilize that foot so we can strengthen the ankle. Something like this:
That right there makes me want to jump up and down. I know, I know it's not what he'll be wearing full time, but even the prospect of having these tiny braces in my house makes me excited. He's getting stronger! Maybe someday this is all he will need. The great thing is that even if our insurance doesn't pay for these, a pair is only about $50, so no biggie. I wanted to get him measured right there, but she said we'd be thinking about it over the next couple of weeks. She obviously isn't as excited as I am, and as Blake was when I told him about it. :)
Anyway, after therapy, the kids and I went out to lunch, which was a disaster because both were so tired and whiny (that is putting it mildly), and then we drove to Nashville (about 3 hours away). Yes we did. And for the last hour, Nate asked, "Are we there yet?" almost once a minute, every minute. It was a blast. But it was time for his 6 month urology update at Vanderbilt. We always do his big SB clinic in the fall, and urology is the only specialty that insists on seeing him another time of the year, despite the fact that he's never had a single problem. Anyway, we like them, so it's okay.
They did a renal ultrasound, and his bladder and kidneys looked perfect. I really like his urologist, Dr. Tanaka. When we saw her in October, potty training was going very well. Since then, Nate regressed and we have taken a total break from it because he is so resistant. She assured me that we did the right thing. IF he is able to potty train typically, which is our hope, it's only going to happen when he wants to do it. She reminded me that even typical boys potty train later than girls, and kids with SB who do potty train do so later than their typical peers. So it does not alarm her at all that Nate is still in pull ups. I told her that our goal has been that he will be in big boy underwear by Kindergarten. She said that would be wonderful but she doesn't think it's very realistic, and if it doesn't happen to not consider it a failure, for any of us. She assured me that eventually, he'll want to do it. I have had my doubt about that sometimes! But right now, that's my prayer--that Nate will WANT to do this. Otherwise, it's a no-go. It's often frustrating for me when I see other kids who have SB and are younger than Nate and they are already wearing big boy undies because they're on good bowel and bladder management programs. I asked Dr. Tanaka if she saw any reason for us to start any of these programs with Nate now, and she said no. There's no health reason to do it, and if he is resistant to just sitting on a potty, he's going to be even more resistant to those programs. So we wait. But I do feel much better about what we're doing ... or at this point, what we're not doing.
Nate and Georgia were actually great at the hospital. While we were in the room waiting for the doctor they ate snacks and chased each other and played games and got along like they like each other! which they usually do. Nate asked me the name of the doctor he would be seeing, and he practiced saying it. When she walked in, he said, "Hi, Dr. Tiniki!" :) Then he tried it again and said Dr. Tanaka, and she was impressed. As we were leaving and Nate was running ahead of me, I heard a nurse ask Dr. T., "Is that Nate? Is he a prenatal surgery baby?" She also sounded impressed.
For being so good, Nate got the supreme treat of being allowed to hang out at the big model train display on the first floor of the hospital. As I sat there watching him run around pushing the buttons, laughing, and playing with the other kids, I overheard a couple call their parents to give them an update about their daughter who was in the NICU. When I am at Vanderbilt, it feels like yesterday that Nate was in the NICU. It is such a time warp. I can be washing my hands, and the smell of the soap can transport me back nearly five years ago to the NICU, where I stood washing pump parts at the sink countless times a day. My mind starts playing video of us walking Nate past the trains in his stroller when he was a baby, then the time I brought him for his 30 month checkup, and he stood there at the trains in his walker. On Friday I sat there watching him run around with the other children, and people were passing by, totally unaware that Nate had any issues at all. I wanted to grab them and tell them what a miracle this was. And then I saw children with bald heads walking by, and I tearfully thanked God that he dealt us "only" Spina Bifida.
So back to me cramming so much in one day. After leaving the hospital (I have no idea what time it was because they're on a different time zone as us and I get confused, but probably around 5:30), we went to visit my friend Kathryn and her husband and three little boys. One is brand new, and this is the first time I had seen him. Her other two are a little older and a little younger than Nate, and oh my, Nate had so. much. fun. playing with these boys. They just disappeared for like an hour upstairs playing! Then they would run down and do a little skit or something and run back up. The whole time Nate would be yelling "Wait for me!!" :) We had fun, but we did not get much sleep that night, as Nate slept in the bed with me and kept reminding me he was NOT tired, and Georgia slept in a pack n play in the same room and ended up in the bed with us by morning.
Nate was so upset to leave his new friends, but we got on the road and headed to Bowling Green for a Spina Bifida playgroup. I had arranged to have this playgroup at a McDonalds that had an indoor playplace. Of course I had never been there before, so I hoped it had a place for little kids to play. Not so much. This thing was a huge climbing structure, with tubes and slides. We got there about an hour before the playdate started, and Nate said he wanted to try climbing it. I cringed. This place was crawling with kids, and lots of big kids. But I said go for it. He got halfway up the first tube and I could hear him crying. Kids were climbing over him. I told him he needed to either come back down or keep climbing. He chose to keep climbing. These tubes are solid, and there are only a few little windows where you can see anything, but I saw him get to the first platform and I yelled for him to go down the little slide there. He didn't hear me. He kept climbing higher. At this point I was a nervous wreck. I couldn't see him. I couldn't hear him. Kids were everywhere. The only way down was this huge tube slide, that I knew he'd be afraid of. So I just sat there with my stomach in knots.
I looked around for a big kid--a girl--and finally saw one who was going in. I told her to look for Nate and said what he was wearing. She came down the slide a few minutes later and said he was all the way up at the top just sitting there and wouldn't come down the slide, but he was okay. First of all, the very top was like 20 feet up in the air. How in the world did he get up there?! And second, this thing is made for kids 12 and under, and I certainly cannot climb through these tubes to the top of the play structure!! The little girl went up, and next time I saw her, she had Nate in her lap coming down the slide. He was smiling. He wanted to go again. Oh my gosh! He's killing me! So the same thing happened again, including him getting stuck at the top and needing help down the slide, and another ulcer for me. Finally I asked the girl if she would show him where the first slide was. From then on he would just go up to the first platform and slide down the smaller slide by himself, which made me so much happier. Toward the very end of the playgroup, I heard crying coming from inside one of the tubes, but it was Georgia! How did she get up there?!!! My kids are monkeys. This time I did have to climb up there and rescue her. And I am so grateful that Nate can climb up there, but I am not going to McDonalds for a very long time.
Today we recuperated, but I think I could use another day or two. It was a big weekend.
It started with me taking Nate (and Georgia tagged along) to therapy. Every Friday morning he has back to back OT and PT, and during PT he rides the horse (hippotherapy). For the last couple of weeks we've had a substitute PT for one reason or another, and we had a very interesting conversation this time. She was taking a look at his braces, which are called SMOs and look pretty similar to this:
I can't tell about that one, but Nate's have a top strap around the ankle. He didn't use to have this top strap on his previous braces, but we noticed he was crouching a bit and bending his knees when standing still, so the PT thought this ankle strap would force his ankle a bit more still and make him stand up straighter. When he first got it, it was rubbing his ankle and making a place there, so the PT said to just leave it very loose. After that healed, I started strapping it tighter, thinking it would do its job that way. And it has--I really haven't noticed Nate crouching in the last several months. So apparently he has gotten stronger too. But a couple weeks ago, his regular PT told Blake that I was strapping that top strap too tight, that it needed to be lose. So on Friday when I was talking to the sub, I asked about this. If it's that loose, it's not even doing any good. Why not remove the strap? She agreed and said we could cut off the strap because it really doesn't look like he needs it anymore (after watching him run around without it strapped for awhile). Great! The less support, the better. I want Nate to be moving every single muscle that works, so we can get them stronger.
I was telling her about a night last week when Nate asked Blake to help him take his shoes off because he wanted to dance. Apparently his shoes were getting in the way, and he had some major dancing to get done. Nate can walk pretty well without his braces and shoes, and we like to give his feet that exercise (the braces stabilize his feet and ankle, so he can't move them much). But his feet pronate, which means he sort of stands on the insides of his feet a bit. Well Blake was watching him dance barefoot, and not only was he standing on the inside of his feet, but his left foot was so distorted that it looked like it was curving outward. It didn't look good. This PT said she understood we wanted him to be using those muscles, but he needs some support on his feet.
This is the way she explained it, which made total sense to me. You build strength from the top down. So first the hips, then the knees, then the ankles, then the feet. Well, we have worked on the leg above the ankle by strapping the ankle, and now it's time to strengthen the ankle. So we will need some side to side movement there that he can't do with his SMO on, but he will not be able to properly exercise his ankle if his foot is a mess. At first she suggested just a mid-rise shoe for him to wear around the house, but then she brought up a lower brace. He could wear this inside of a shoe, at home and maybe at PT sometimes, to stabilize that foot so we can strengthen the ankle. Something like this:
Anyway, after therapy, the kids and I went out to lunch, which was a disaster because both were so tired and whiny (that is putting it mildly), and then we drove to Nashville (about 3 hours away). Yes we did. And for the last hour, Nate asked, "Are we there yet?" almost once a minute, every minute. It was a blast. But it was time for his 6 month urology update at Vanderbilt. We always do his big SB clinic in the fall, and urology is the only specialty that insists on seeing him another time of the year, despite the fact that he's never had a single problem. Anyway, we like them, so it's okay.
They did a renal ultrasound, and his bladder and kidneys looked perfect. I really like his urologist, Dr. Tanaka. When we saw her in October, potty training was going very well. Since then, Nate regressed and we have taken a total break from it because he is so resistant. She assured me that we did the right thing. IF he is able to potty train typically, which is our hope, it's only going to happen when he wants to do it. She reminded me that even typical boys potty train later than girls, and kids with SB who do potty train do so later than their typical peers. So it does not alarm her at all that Nate is still in pull ups. I told her that our goal has been that he will be in big boy underwear by Kindergarten. She said that would be wonderful but she doesn't think it's very realistic, and if it doesn't happen to not consider it a failure, for any of us. She assured me that eventually, he'll want to do it. I have had my doubt about that sometimes! But right now, that's my prayer--that Nate will WANT to do this. Otherwise, it's a no-go. It's often frustrating for me when I see other kids who have SB and are younger than Nate and they are already wearing big boy undies because they're on good bowel and bladder management programs. I asked Dr. Tanaka if she saw any reason for us to start any of these programs with Nate now, and she said no. There's no health reason to do it, and if he is resistant to just sitting on a potty, he's going to be even more resistant to those programs. So we wait. But I do feel much better about what we're doing ... or at this point, what we're not doing.
Nate and Georgia were actually great at the hospital. While we were in the room waiting for the doctor they ate snacks and chased each other and played games and got along like they like each other! which they usually do. Nate asked me the name of the doctor he would be seeing, and he practiced saying it. When she walked in, he said, "Hi, Dr. Tiniki!" :) Then he tried it again and said Dr. Tanaka, and she was impressed. As we were leaving and Nate was running ahead of me, I heard a nurse ask Dr. T., "Is that Nate? Is he a prenatal surgery baby?" She also sounded impressed.
For being so good, Nate got the supreme treat of being allowed to hang out at the big model train display on the first floor of the hospital. As I sat there watching him run around pushing the buttons, laughing, and playing with the other kids, I overheard a couple call their parents to give them an update about their daughter who was in the NICU. When I am at Vanderbilt, it feels like yesterday that Nate was in the NICU. It is such a time warp. I can be washing my hands, and the smell of the soap can transport me back nearly five years ago to the NICU, where I stood washing pump parts at the sink countless times a day. My mind starts playing video of us walking Nate past the trains in his stroller when he was a baby, then the time I brought him for his 30 month checkup, and he stood there at the trains in his walker. On Friday I sat there watching him run around with the other children, and people were passing by, totally unaware that Nate had any issues at all. I wanted to grab them and tell them what a miracle this was. And then I saw children with bald heads walking by, and I tearfully thanked God that he dealt us "only" Spina Bifida.
So back to me cramming so much in one day. After leaving the hospital (I have no idea what time it was because they're on a different time zone as us and I get confused, but probably around 5:30), we went to visit my friend Kathryn and her husband and three little boys. One is brand new, and this is the first time I had seen him. Her other two are a little older and a little younger than Nate, and oh my, Nate had so. much. fun. playing with these boys. They just disappeared for like an hour upstairs playing! Then they would run down and do a little skit or something and run back up. The whole time Nate would be yelling "Wait for me!!" :) We had fun, but we did not get much sleep that night, as Nate slept in the bed with me and kept reminding me he was NOT tired, and Georgia slept in a pack n play in the same room and ended up in the bed with us by morning.
Nate was so upset to leave his new friends, but we got on the road and headed to Bowling Green for a Spina Bifida playgroup. I had arranged to have this playgroup at a McDonalds that had an indoor playplace. Of course I had never been there before, so I hoped it had a place for little kids to play. Not so much. This thing was a huge climbing structure, with tubes and slides. We got there about an hour before the playdate started, and Nate said he wanted to try climbing it. I cringed. This place was crawling with kids, and lots of big kids. But I said go for it. He got halfway up the first tube and I could hear him crying. Kids were climbing over him. I told him he needed to either come back down or keep climbing. He chose to keep climbing. These tubes are solid, and there are only a few little windows where you can see anything, but I saw him get to the first platform and I yelled for him to go down the little slide there. He didn't hear me. He kept climbing higher. At this point I was a nervous wreck. I couldn't see him. I couldn't hear him. Kids were everywhere. The only way down was this huge tube slide, that I knew he'd be afraid of. So I just sat there with my stomach in knots.
I looked around for a big kid--a girl--and finally saw one who was going in. I told her to look for Nate and said what he was wearing. She came down the slide a few minutes later and said he was all the way up at the top just sitting there and wouldn't come down the slide, but he was okay. First of all, the very top was like 20 feet up in the air. How in the world did he get up there?! And second, this thing is made for kids 12 and under, and I certainly cannot climb through these tubes to the top of the play structure!! The little girl went up, and next time I saw her, she had Nate in her lap coming down the slide. He was smiling. He wanted to go again. Oh my gosh! He's killing me! So the same thing happened again, including him getting stuck at the top and needing help down the slide, and another ulcer for me. Finally I asked the girl if she would show him where the first slide was. From then on he would just go up to the first platform and slide down the smaller slide by himself, which made me so much happier. Toward the very end of the playgroup, I heard crying coming from inside one of the tubes, but it was Georgia! How did she get up there?!!! My kids are monkeys. This time I did have to climb up there and rescue her. And I am so grateful that Nate can climb up there, but I am not going to McDonalds for a very long time.
Today we recuperated, but I think I could use another day or two. It was a big weekend.
Wednesday, March 16, 2011
Enough Already!
I am so over this winter! We have had non stop illness for a month!
1. Nate had the flu. It lasted a good week. He was miserable and just laid on the couch with no energy for days.
2. A week after he pretty much got over the flu, Nate came down with a stomach bug that landed him in the emergency room and needed IV fluids. Nate really hates IVs.
3. Georgia caught the bug. Threw up a couple times and was over it.
4. Blake caught the bug. He was sick, sick, sick and had to miss a day of work.
5. I'm not going to catch it, I'm not going to catch it ... I caught it. :( Thankfully I didn't get sick and just had a fever and felt bad for about a day.
6. Georgia was crying a lot and had major crusty eyes and a fever. Turns out she had an ear infection and needed an antibiotic.
7. A week later, Georgia had a TERRIBLE fever. I took her to the doctor, and she still had an ear infection and got a different antibiotic (seriously, this girl is on the verge of ear tubes), but she suspected she also had a virus causing the fever. That night, even after tylenol, she was shivering uncontrollably and her lips were BLUE. I wrapped her up and cuddled her until she stopped shivering, and then she was on fire. I took her temperature with a digital head scan thermometer, and the first two swipes it just said, "High." Like it was too high to even measure it?! The third swipe, Georgia pushed it away and it didn't get as good of a read. It read: 106.1. Ack!!!!! Blake said, "Take her to the hospital!" So I did. Of course there was nothing they could do for her other than what we were already doing, and that's probably the most expensive dose of motrin we'll ever pay for.
8. Nate started coughing. I kept saying it's probably just allergies, because I had a little nagging cough too. But I get very nervous when Nate coughs. He has chronic lung disease of prematurity/asthma, and he's landed in the hospital for less than this. So I gave him cough syrup, called the doctor to check with her about it, and just waited. And then it got worse. So this morning I took him in to the pediatrician's office, and he thought he might hear just a little something in his chest. Of course the worry is pneumonia. So he put him on an antibiotic for a potential sinus infection (which means both kids are now on an antibiotic) and said to give him breathing treatments. Ahhh, time to pull out the old nebulizer. I think he sounded better already tonight.
So, it has been a stressful month, as we have tried to juggle a really busy month at work for both me and Blake, and trying to keep the kids alive. Today was a beautiful sunny day, and I see hope of spring! Come on, spring! Go away, sickies!
1. Nate had the flu. It lasted a good week. He was miserable and just laid on the couch with no energy for days.
2. A week after he pretty much got over the flu, Nate came down with a stomach bug that landed him in the emergency room and needed IV fluids. Nate really hates IVs.
3. Georgia caught the bug. Threw up a couple times and was over it.
4. Blake caught the bug. He was sick, sick, sick and had to miss a day of work.
5. I'm not going to catch it, I'm not going to catch it ... I caught it. :( Thankfully I didn't get sick and just had a fever and felt bad for about a day.
6. Georgia was crying a lot and had major crusty eyes and a fever. Turns out she had an ear infection and needed an antibiotic.
7. A week later, Georgia had a TERRIBLE fever. I took her to the doctor, and she still had an ear infection and got a different antibiotic (seriously, this girl is on the verge of ear tubes), but she suspected she also had a virus causing the fever. That night, even after tylenol, she was shivering uncontrollably and her lips were BLUE. I wrapped her up and cuddled her until she stopped shivering, and then she was on fire. I took her temperature with a digital head scan thermometer, and the first two swipes it just said, "High." Like it was too high to even measure it?! The third swipe, Georgia pushed it away and it didn't get as good of a read. It read: 106.1. Ack!!!!! Blake said, "Take her to the hospital!" So I did. Of course there was nothing they could do for her other than what we were already doing, and that's probably the most expensive dose of motrin we'll ever pay for.
8. Nate started coughing. I kept saying it's probably just allergies, because I had a little nagging cough too. But I get very nervous when Nate coughs. He has chronic lung disease of prematurity/asthma, and he's landed in the hospital for less than this. So I gave him cough syrup, called the doctor to check with her about it, and just waited. And then it got worse. So this morning I took him in to the pediatrician's office, and he thought he might hear just a little something in his chest. Of course the worry is pneumonia. So he put him on an antibiotic for a potential sinus infection (which means both kids are now on an antibiotic) and said to give him breathing treatments. Ahhh, time to pull out the old nebulizer. I think he sounded better already tonight.
So, it has been a stressful month, as we have tried to juggle a really busy month at work for both me and Blake, and trying to keep the kids alive. Today was a beautiful sunny day, and I see hope of spring! Come on, spring! Go away, sickies!
Friday, March 4, 2011
It's okay, I have issues too
This afternoon, Bekah (our sitter) texted me about something Nate said that cracked her up. She was changing Nate's pull-up and couldn't get it on straight, and she said, "Sorry, Nate! I'm having issues today!" Nate laughed and said, "That's okay, Miss Bekah. I have issues too."
I laughed and laughed and laughed, because a) kids say the funniest things and b) after the morning we had, if I didn't laugh about his "issues" I probably would have cried!
We had a rough morning. Nate is like his mama--NOT a morning person. This morning he was wailing as soon as he woke up, and he screamed over every little thing. He cried over my hair dryer being too loud and drowning out his cartoons, so he wanted a do-over ... he actually wanted me to turn up the TV and dry my hair AGAIN. He was insistent. Of course I was equally insistent: No.
Then, true to our Love and Logic book, I gave him a choice: Nate, do you want to get dressed while we're still upstairs, or do you want to get dressed downstairs (I couldn't have cared less either way, but supposedly giving kids choices makes them more compliant. Whatever!) Nate's choice: "I don't want to get dressed." Okay, sticking with my Love and Logic, I chose for him: Let's get dressed upstairs. We have been working on him learning to dress himself lately, so I made him pull his shirt over his head, pull up his pants as far as he could get them, pull on his socks, etc ... all the while, he was throwing the biggest tantrum he could muster. I just remained calm, and kept going. Then he decided he wanted to get dressed downstairs instead of upstairs. So he wanted me to UNDRESS him, then DRESS him all over again, this time downstairs. Okay, this is just getting wierd! (And if there was any doubt, my answer was of course: No.) It was fit after fit like that all morning, but I was pretty proud of myself that I didn't get outwardly worked up about his tantrums at all.
In the moment, it feels like this is the "norm," that Nate always acts like this. He doesn't. Most of the time, he is a fun and lovable kid to be around, but when he's grumpy, he's really grumpy. All morning, I was struggling with what we're going to do with him. We see an OT for his sensory issues, we see a behavioral therapist for the tantrums, we are consistent at home (ahem, I am consistent, and Blake is sometimes a pushover, but still, not enough to "cause" these issues), we love our kids like crazy ... I always thought that it was the parents who didn't care who had the kids with the behavior issues! :) That was before I had kids!
I've said it before--Nate has always been a little mystery to me. I always feel like there is a piece of the puzzle that I just can't figure out yet. I fear I could be missing something. That's not an unfounded fear--there have been a few times when I've been sucker punched by a new diagnosis. So my goal is to always be proactive. I want to know anything and everything about his diagnosis, related conditions, community resources, therapies ... anything that might give Nate a better life and us a better understanding of him. I get involved, I do my research, I talk with other parents ... I feel like I "collect" SB moms on facebook and blogs. The more resources, the better! Because from time to time, I hear the parent of an SB teenager or adult say with regret, "Oh, if I had only known about this years ago..." about learning disabilities or Medicaid waivers or bowel management programs or school resources or whatever they feel would have made a difference in their child's life. I don't want regrets. But that is a lot of pressure to put on a mama.
This afternoon, I was on the phone with my mom, telling her my concerns about Nate's behavior and bouncing some ideas off her about what to do. Well, today is my mom's birthday, and with all those years comes wisdom ;) (she's actually very young in years and at heart). She said, "He doesn't need another specialist." Well, my first thought was "Blasphemy!" But, see, I do this from time to time. I lose sight of the big picture, of how things really work. When I start thinking things like, "Okay, we have a urologist who looks at the bladder and kidneys, and a neurosurgeon who looks at the brain and spine, and an orthopedic surgeon who looks at his legs and feet, and a neurologist who monitors for seizures, and a physical therapist who works on gross motor, and an occupational therapist who works on sensory and fine motor, and a behavioral therapist who works on tantrums ... but who's the specialist who looks at the WHOLE picture of Nate?" And I think and think and think about who that might be, until it dawns on me:
Duh! It's God!
And that's what my mom reminded me today. That God:
a) MADE Nate. Just like he is, on purpose. And because of that, He knows everything about him.
b) LOVES Nate, even more than I love Nate, and that's a whole lot.
c) started a good work in Nate and will continue it to completion. ("he who began a good work in you will carry it on to completion until the day of Christ Jesus" Philippians 1:6)
d) started a good work in me too, and sometimes the really hard stuff is what refines us and gives us perseverence.
e) will give me wisdom to handle these "issues" the way they need to be handled, if I ask for it. And I need to ask for it on a daily basis, for all the daily issues that pop up.
f) doesn't want me stressed every day.
Collective deep breath, now.
So, yeah, Nate has some issues, and I have some issues of my own! That's alright. This is a journey, and I don't have to figure it all out today. I'm glad somebody has it all figured out--there's so much comfort in knowing God is in control and there's a purpose to all of this.
And by the way, Nate was back to his sweet, fun-loving self after hippotherapy this morning. Sometimes God does use specialists, and even smelly old horses, to work on our issues.
I laughed and laughed and laughed, because a) kids say the funniest things and b) after the morning we had, if I didn't laugh about his "issues" I probably would have cried!
We had a rough morning. Nate is like his mama--NOT a morning person. This morning he was wailing as soon as he woke up, and he screamed over every little thing. He cried over my hair dryer being too loud and drowning out his cartoons, so he wanted a do-over ... he actually wanted me to turn up the TV and dry my hair AGAIN. He was insistent. Of course I was equally insistent: No.
Then, true to our Love and Logic book, I gave him a choice: Nate, do you want to get dressed while we're still upstairs, or do you want to get dressed downstairs (I couldn't have cared less either way, but supposedly giving kids choices makes them more compliant. Whatever!) Nate's choice: "I don't want to get dressed." Okay, sticking with my Love and Logic, I chose for him: Let's get dressed upstairs. We have been working on him learning to dress himself lately, so I made him pull his shirt over his head, pull up his pants as far as he could get them, pull on his socks, etc ... all the while, he was throwing the biggest tantrum he could muster. I just remained calm, and kept going. Then he decided he wanted to get dressed downstairs instead of upstairs. So he wanted me to UNDRESS him, then DRESS him all over again, this time downstairs. Okay, this is just getting wierd! (And if there was any doubt, my answer was of course: No.) It was fit after fit like that all morning, but I was pretty proud of myself that I didn't get outwardly worked up about his tantrums at all.
In the moment, it feels like this is the "norm," that Nate always acts like this. He doesn't. Most of the time, he is a fun and lovable kid to be around, but when he's grumpy, he's really grumpy. All morning, I was struggling with what we're going to do with him. We see an OT for his sensory issues, we see a behavioral therapist for the tantrums, we are consistent at home (ahem, I am consistent, and Blake is sometimes a pushover, but still, not enough to "cause" these issues), we love our kids like crazy ... I always thought that it was the parents who didn't care who had the kids with the behavior issues! :) That was before I had kids!
I've said it before--Nate has always been a little mystery to me. I always feel like there is a piece of the puzzle that I just can't figure out yet. I fear I could be missing something. That's not an unfounded fear--there have been a few times when I've been sucker punched by a new diagnosis. So my goal is to always be proactive. I want to know anything and everything about his diagnosis, related conditions, community resources, therapies ... anything that might give Nate a better life and us a better understanding of him. I get involved, I do my research, I talk with other parents ... I feel like I "collect" SB moms on facebook and blogs. The more resources, the better! Because from time to time, I hear the parent of an SB teenager or adult say with regret, "Oh, if I had only known about this years ago..." about learning disabilities or Medicaid waivers or bowel management programs or school resources or whatever they feel would have made a difference in their child's life. I don't want regrets. But that is a lot of pressure to put on a mama.
This afternoon, I was on the phone with my mom, telling her my concerns about Nate's behavior and bouncing some ideas off her about what to do. Well, today is my mom's birthday, and with all those years comes wisdom ;) (she's actually very young in years and at heart). She said, "He doesn't need another specialist." Well, my first thought was "Blasphemy!" But, see, I do this from time to time. I lose sight of the big picture, of how things really work. When I start thinking things like, "Okay, we have a urologist who looks at the bladder and kidneys, and a neurosurgeon who looks at the brain and spine, and an orthopedic surgeon who looks at his legs and feet, and a neurologist who monitors for seizures, and a physical therapist who works on gross motor, and an occupational therapist who works on sensory and fine motor, and a behavioral therapist who works on tantrums ... but who's the specialist who looks at the WHOLE picture of Nate?" And I think and think and think about who that might be, until it dawns on me:
Duh! It's God!
And that's what my mom reminded me today. That God:
a) MADE Nate. Just like he is, on purpose. And because of that, He knows everything about him.
b) LOVES Nate, even more than I love Nate, and that's a whole lot.
c) started a good work in Nate and will continue it to completion. ("he who began a good work in you will carry it on to completion until the day of Christ Jesus" Philippians 1:6)
d) started a good work in me too, and sometimes the really hard stuff is what refines us and gives us perseverence.
e) will give me wisdom to handle these "issues" the way they need to be handled, if I ask for it. And I need to ask for it on a daily basis, for all the daily issues that pop up.
f) doesn't want me stressed every day.
Collective deep breath, now.
So, yeah, Nate has some issues, and I have some issues of my own! That's alright. This is a journey, and I don't have to figure it all out today. I'm glad somebody has it all figured out--there's so much comfort in knowing God is in control and there's a purpose to all of this.
And by the way, Nate was back to his sweet, fun-loving self after hippotherapy this morning. Sometimes God does use specialists, and even smelly old horses, to work on our issues.
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