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.
Monday, February 21, 2011
Against doctor's orders
It was almost exactly one year ago when Nate was diagnosed with epilepsy. The e-word still makes me cringe, but that's what it is. He was having staring spells at school, which led to an EEG, which did not show an actual seizure but did show "sparks" of seizure activity every few *seconds.* If not for the EEG, I would not have believed he was really having seizures, because when I would say his name, he would come right back out of it. It wasn't causing any damage, but they told me constant zoning out would cause delays, and we certainly didn't want that.
So the plan was to put him on medication for a minimum of two years, then we'd do another EEG, but no one gave us any hope that Nate would grow out of this. We first tried Keppra, and it made Nate pure evil. It was bad. After 6 weeks, we switched to Topomax, which didn't result in any side effects, but the problem was that it came in sprinkle caps. So we had to sprinkle this stuff in some pudding or yogurt twice a day. But Nate has some texture issues, and plus this medicine tasted bad, so every day, twice a day, we had a major battle. Sometimes we would be open about putting it in his food, but then he wouldn't eat it at all. Sometimes we would try hiding it, but he would taste it. And he started questioning everything I gave him to eat, lol. "Are there sprinkles in this peanut butter sandwich?" (Usually there were.) There were a lot of tantrums and a lot of missed doses.
At his 6 month follow up, I reported that Nate had not been having seizures that I could tell (but honestly, I could never tell), but I wanted to know if there was a liquid form of Topomax. I explained the issue. She wrote a prescription for a liquid form, which the pharmacy would have to mix for us every 2 weeks. No problem. Those first two weeks were blissful. Nate would take it by liquid no problem. The next time we went to pick up the prescription, they told us that our Medicaid denied paying for it because it was expensive and contained over the counter ingredients. So that would mean we were paying $80/month for this liquid medicine.
After those 2 weeks without battles, we really did not want to go back to sprinkle caps. We gave it a half-hearted try, and we ended up forgetting (by accident or on purpose) to give it to him at least once a day. But there were no staring spells. Finally I decided that the benefits of taking the medicine (fewer staring spells--even though we hadn't seen a staring spell in forever) did not outweigh to twice a day battle to get the medicine down his throat. So I stopped giving it to him. (Eek!)
Now, I do not condone my behavior in any way, lol. I can't think of more than a couple times I have actually gone against doctors orders for Nate. But in this case, I really felt like he didn't need the medicine. So I gave it a shot. And everything was fine. Four months later, everything is fine. His teachers have not seen one staring spell, and neither have we at home.
So, today was his neurologist check up. (Dun Dun Dunnnnn) I really was not looking forward to reporting my negligence. Dr. Farber is a very nice man who always wears a bow tie. He asked me how things were going, and I said, "I really don't want to tell you this, but I weaned Nate off of his medication." Hmm, I was right. He didn't like it. He understood my reasons, even if he disagreed. At some points, he was using a tone of voice one might use with one of those unreasonable combative moms. :) He asked if I would at least agree to doing another EEG. I told him that was fine, I really don't have anything against medication or any kind of interventions--just this particular medication was not working for us.
So we scheduled an EEG for March 16. Dr. Farber said if it comes back normal or even just slightly abnormal, we'll forget the medication. (Even though they have a pretty strict rule that every kid is on medication for at least 2 years, regardless of clean EEG.) But if it comes back like it did last year, he's going back on medication. We can try a different kind of medication that comes in liquid form, such as Trileptal. We did not try this before because of the side effect of weight gain, which would not be good for Nate's mobility, but he said we could try it and see what happened. So, an EEG it is. Let's all pray it comes back normal! How awesome would that be!
Sidenote: I am always amused at Nate's various non-SB specialists. They always want to talk about the fetal surgery and the Spina Bifida, and they always want to see Nate's feet! Like, his pulmonologist (lung doctor) once asked to see his feet. :) Well, Dr. Farber saw his feet last time, so this time he just asked Nate to run up and down the hallway so he could watch him. Does this have something to do with neurology? I guess so. Does it have anything to do with seizures? I'm pretty sure it does not. I don't mind showing off my little pride and joy though.
Nate's doctor appointment turned into a little Mommy and Son date this morning, and it was nice to be able to spend some time with just him for a change. I dropped Georgia off at the sitter's and took Nate to work with me. He was pretty good except he kept sneaking in the bathroom to play with water in the sink. There were plenty of toys there, but I finally found one he was interested in--a Connect 4 game. Then we went to his appointment, and the highlight for him was getting to run in all the long hallways. He was an angel during the appointment, then I drove him to school, where he was just a few minutes late, and sat with him during lunch. We had lots of good conversation.
I just really like that kid. Love him too.
So the plan was to put him on medication for a minimum of two years, then we'd do another EEG, but no one gave us any hope that Nate would grow out of this. We first tried Keppra, and it made Nate pure evil. It was bad. After 6 weeks, we switched to Topomax, which didn't result in any side effects, but the problem was that it came in sprinkle caps. So we had to sprinkle this stuff in some pudding or yogurt twice a day. But Nate has some texture issues, and plus this medicine tasted bad, so every day, twice a day, we had a major battle. Sometimes we would be open about putting it in his food, but then he wouldn't eat it at all. Sometimes we would try hiding it, but he would taste it. And he started questioning everything I gave him to eat, lol. "Are there sprinkles in this peanut butter sandwich?" (Usually there were.) There were a lot of tantrums and a lot of missed doses.
At his 6 month follow up, I reported that Nate had not been having seizures that I could tell (but honestly, I could never tell), but I wanted to know if there was a liquid form of Topomax. I explained the issue. She wrote a prescription for a liquid form, which the pharmacy would have to mix for us every 2 weeks. No problem. Those first two weeks were blissful. Nate would take it by liquid no problem. The next time we went to pick up the prescription, they told us that our Medicaid denied paying for it because it was expensive and contained over the counter ingredients. So that would mean we were paying $80/month for this liquid medicine.
After those 2 weeks without battles, we really did not want to go back to sprinkle caps. We gave it a half-hearted try, and we ended up forgetting (by accident or on purpose) to give it to him at least once a day. But there were no staring spells. Finally I decided that the benefits of taking the medicine (fewer staring spells--even though we hadn't seen a staring spell in forever) did not outweigh to twice a day battle to get the medicine down his throat. So I stopped giving it to him. (Eek!)
Now, I do not condone my behavior in any way, lol. I can't think of more than a couple times I have actually gone against doctors orders for Nate. But in this case, I really felt like he didn't need the medicine. So I gave it a shot. And everything was fine. Four months later, everything is fine. His teachers have not seen one staring spell, and neither have we at home.
So, today was his neurologist check up. (Dun Dun Dunnnnn) I really was not looking forward to reporting my negligence. Dr. Farber is a very nice man who always wears a bow tie. He asked me how things were going, and I said, "I really don't want to tell you this, but I weaned Nate off of his medication." Hmm, I was right. He didn't like it. He understood my reasons, even if he disagreed. At some points, he was using a tone of voice one might use with one of those unreasonable combative moms. :) He asked if I would at least agree to doing another EEG. I told him that was fine, I really don't have anything against medication or any kind of interventions--just this particular medication was not working for us.
So we scheduled an EEG for March 16. Dr. Farber said if it comes back normal or even just slightly abnormal, we'll forget the medication. (Even though they have a pretty strict rule that every kid is on medication for at least 2 years, regardless of clean EEG.) But if it comes back like it did last year, he's going back on medication. We can try a different kind of medication that comes in liquid form, such as Trileptal. We did not try this before because of the side effect of weight gain, which would not be good for Nate's mobility, but he said we could try it and see what happened. So, an EEG it is. Let's all pray it comes back normal! How awesome would that be!
Sidenote: I am always amused at Nate's various non-SB specialists. They always want to talk about the fetal surgery and the Spina Bifida, and they always want to see Nate's feet! Like, his pulmonologist (lung doctor) once asked to see his feet. :) Well, Dr. Farber saw his feet last time, so this time he just asked Nate to run up and down the hallway so he could watch him. Does this have something to do with neurology? I guess so. Does it have anything to do with seizures? I'm pretty sure it does not. I don't mind showing off my little pride and joy though.
Nate's doctor appointment turned into a little Mommy and Son date this morning, and it was nice to be able to spend some time with just him for a change. I dropped Georgia off at the sitter's and took Nate to work with me. He was pretty good except he kept sneaking in the bathroom to play with water in the sink. There were plenty of toys there, but I finally found one he was interested in--a Connect 4 game. Then we went to his appointment, and the highlight for him was getting to run in all the long hallways. He was an angel during the appointment, then I drove him to school, where he was just a few minutes late, and sat with him during lunch. We had lots of good conversation.
I just really like that kid. Love him too.
Saturday, February 19, 2011
Nate's new ride
So you might remember that Santa brought Nate an AmTryke this Christmas. If you're not aware of what an AmTryke is, it's an adaptive tricycle, which they make in different sizes, and an organization called Ambucs will put children on a wish list for these bikes and raise the money to buy them. I first really learned about these bikes at an event last May when some therapists were fitting kids for bikes. I was there for work, but when I saw how cool they were, I got Nate there pronto. And I was a little disappointed that when Nate got on a bike, he wasn't as into it as I was. He sorta thought it was cool, but it seemed like a lot of work. Anyway, so a local group of people, including my boss, worked together to establish a Louisville Ambucs group to fund bikes for all these kids who were fitted for bikes that day. SBAK bought one of those kids a bike right after the fitting, then in late fall, when they had raised some money, they chose one name from a hat to fulfill their wish for a bike. They chose Nate! And just in time for Santa to put it under the tree.
There was this shiny red bike under the tree ... and Nate paid no attention to it whatsoever. I knew I HAD to get a picture of him with the bike to send to the Ambucs people to thank them, but I practically had to wrestle him onto this bike. He said "cheeeeese" long enough for me to take this picture and then immediately started crying. I felt awful! Some little boy who would appreciate the bike could have gotten it instead of him!
Well, because of the weather, we didn't get a chance to try it out until last weekend. He really didn't want to ride the bike until I told him he could go really fast, so he obliged.
Then we got going ...
 |
| Scared face |
 |
| Very unhappy face |
Last night we went out and worked on it again, and we had a turnaround! He LOVED it! We went down to the cul de sac, and I unlocked the handlebars and let him go however he wanted. I was trying to keep up with Georgia anyway. Pretty quickly, he got the hang of steering. We even rode down to the cemetary close to our house and Nate biked around the trail. I held on to the push bar most of the time. (Yes, he was in pajama pants, and there was chocolate on his mouth.)
Part of the reason I made sure we went out to practice last night was cause we had an Ambucs event to attend today. They were presenting 19 bikes, and they wanted Nate and his bike to be there as well. When we got out of the truck, I decided rather than holding both kids' hands in the parking lot and trying to push the bike, it would be easier if Nate just rode his bike from the truck into the event. I pushed him with the bar while holding Georgia's hand. You should have seen him riding on in to this party! Everyone loved it! He thought he was the coolest. We asked him if he'd be willing to get off the bike so they could present it to him while they were presenting bikes to the other kids, and he thought that would be fine. ;)
While we waited, the kids colored, did crafts, and got their hands painted.
Georgia is a cookie monster! "Caw-kee! Caw-kee!"
Nate's more of a cake man.
Ha, by Nate's expression you wouldn't guess this is our buddy, Caden.
When it came time to present the bikes, they presented Nate's first. As soon as they said Nate Payne, he got up and ran across the floor in front of everyone by himself and let them help him climb on his bike. When did he get to be such a big kid?
Then he took off riding!
There were people there ready to fit the bike for him, but it was good how it was.
A LOT of kids got bikes.
We went outside to this little track they had set up for kids to try out their bikes, and it was so great because it was flat. I followed Nate around holding onto his push bar for a couple laps before I realized, um, he's got this. I let go, and off he went.
Check him out! Riding a bike like a big kid! (If viewing on facebook or email, go here.)
I have to admit that when I first saw these bikes, even though I thought they were really neat, I was sort of hesitant or anxious about it, just like I have been with any kind of equipment we've ever gotten. What is he going to look like riding around the neighborhood on this oversized tricycle while all the other kids are riding normal bikes? But today, when I saw him zooming around this track having the best time ever and getting to do something so typical that every little boy wants to do ... there was only joy. Nate really surprised me today by how independent he was, and if this shiny red bike helps him achieve that, who cares if the bike is different? It's still a bike, and my kid can ride one.
Friday, February 18, 2011
Fruit roll ups and the limbo ... a preschool Valentine's party
Party at the preschool! Woop woop!
I just have to get this off my chest. I think it is kind of silly that cupcakes are no longer allowed at preschool Valentine's Day parties. Only healthy snacks. Whole wheat crackers and low fat cheese. Low fat/fat free pudding. Fruit and low calorie whipped topping. Are you kidding me? I appreciate that this school is emphasizing making good food choices, but we can't have a special treat at a special party? Many of the parents didn't comply anyway. :)
After yummy healthy snacks, it was time to LIMBO!!!! I don't think this is a regulation limbo pole by any means, but the kids had a great time walking around this circle about a hundred times. I got dizzy just watching them.
Most of the kids cheated, but no one was really enforcing proper limbo technique.
Then they turned on the crazy preschool dance tunes!
Check out Nate's mad dance skills!
I just have to get this off my chest. I think it is kind of silly that cupcakes are no longer allowed at preschool Valentine's Day parties. Only healthy snacks. Whole wheat crackers and low fat cheese. Low fat/fat free pudding. Fruit and low calorie whipped topping. Are you kidding me? I appreciate that this school is emphasizing making good food choices, but we can't have a special treat at a special party? Many of the parents didn't comply anyway. :)
After yummy healthy snacks, it was time to LIMBO!!!! I don't think this is a regulation limbo pole by any means, but the kids had a great time walking around this circle about a hundred times. I got dizzy just watching them.
Most of the kids cheated, but no one was really enforcing proper limbo technique.
Little video of Nate limbo-ing.
Then they turned on the crazy preschool dance tunes!
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| This is Nate's usual spot on the "carpet," next to his best friend Trinity. |
This one has a surprise ending, but only Nate knows what the surprise is.
I got to talk with Trinity's guardian during and after the party. Trinity is just the sweetest girl. Since the beginning of school, she has been volunteering every time Nate needs a helper. I've heard sometimes she helps a little too much, on things that Nate needs to be doing himself. :)
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| "My best girl, Trinity." |
My babies can read ... yes, both of them
A couple years ago, a friend was asking for advice about getting a better routine for reading to her little ones, and I was telling her how I read to Nate at certain times of the day. She warned me that it was harder to get in those routines with the second. I didn't doubt her in the least, so it came as no surprise when I saw I wasn't reading to Georgia as much as I always had to Nate.
But there's a big difference here. As a baby, Nate couldn't walk and was happy as a little puppy to just sit in my lap listening to stories for as long as I would read them. Up until recently, she couldn't sit still long enough to get through the shortest of baby board books. Usually at bedtime, I have been reading a few stories to Nate while Georgia wanders around his room looking for trouble, pulling books off his bookshelf, taking wipes out of the box, climbing on top of me, jumping on Nate's bed, etc.
A couple weeks ago, we were at hippotherapy, and Georgia called a horse a "doggy." It was so cute! But I realized she doesn't know the names for any animals except doggies. Memaw reminded me that this is about the age (18 months) that I started reading the Bright Babies First Words books to Nate, so I decided to pull them out for Georgia. Now every night when we are rocking in the glider for a few minutes before I put her in her crib, she asks for "book." But she is hilarious "reading" this book. Each page has a picture of a household object or animal, and I point to it and ask her what it is. Here's how it goes:
Picture of a Girl=Baby!
Picture of a Boy=Nayyy! (Nate)
Shirt=Shut!
Pants=Shut!
Socks=Shocks!
Shoes=Shewwws!
Cup=Miwlk!
Ball=Baw!
Car=Caw!
Boat=Caw!
Teddy bear=Baby!
Banana=Nana!
Cat=PSSSSSSTTTTT!!!!! (Oh no, that's what she thinks a cat is called now, cause that's the noise I make every time our cat is around to get her to stop doing whatever annoying thing she is doing!)
Potty=Paw-ee
Dog=Doggy
Okay, great, so she is doing pretty well with all those first words! Now we move on to the animals ... we have a lot of work ahead of us, lol.
Penguin=Quack Quack
Rabbit=Doggy
Fish=Ish (we actually have fish, so that's why she knows that one)
Goat=Doggy
Butterfly=jumbled nonsense ... pretty sure she's trying to say butterfly
Zebra=Doggy
Lion=Doggy
Macaw=Quack Quack
Tiger=Doggy
Goose=Quack Quack
Kitten=PSSSSSSTTTT!!!
Pig=Doggy
Hen=Quack Quack
.... You get the idea.
Then there's another book about colors that shows a lot of different types of fruits. She calls some fruits (oranges, apples, blueberries) "baw" and all of the other fruits (pears, grapes) "nana". Still scratching my head on that one. But she cracks me up with the enthusiasm in which she answers with the wrong answer.
Well, Georgia is not the only little bookworm in the house. Nate has always loved books, and we always read several before bed. About a year ago, I bought him some BOB books that help children learn to read. Uh, he was three. I was pushing it a little. So every few months I've brought them out for him to look at and see if he had any interest. Last month, he started getting it!!! Now he can read several of these Bob books, and when we pick up a new one, he needs a little help sounding out a few new words, but dude, he is reading!!!! I have a video of him reading an entire one of those books in like a minute, but I guess the video is too big to load on the blog. I'm so proud--I knew my little boy was smart. Reading at 4.5! (Listen, I haven't had too many chances to brag about how "advanced" Nate is in his short little life of therapies and motor delays, so just go with it.)
AND he can draw! This has been an area of major delay with Nate, but today he drew this awesome self-portrait--best I have ever seen from him! AND he can write his name! Okay, I'll stop now.
Anyway, Memaw knows just how much Nate and Georgia loves books, so when she last visited, she brought them a special Valentine's gift--a book that has her voice recorded reading it! Almost every night Nate has asked for Memaw to read him a book, so I bring it out. :) Georgia is very interested and a little confused at this. There's one part of the book where she whispers and then gets really loud, and Nate gets so excited about this part that he shakes and giggles every time.
Okay, in other non-reading news, Nate has been sick this week.
Monday evening he was very whiny ... like moaning and laying on the couch with Blake. When I got home, I saw he was running a fever. The next morning he still had a fever, so Blake and I tag teamed that day so the kids could stay home. Nate layed on the couch almost the entire day. On Wednesday he didn't have a fever, so I took him to the sitter's, but he was still very tired and clingy. I thought for sure he would get over this any minute. Then Thursday he was feeling a little better, but I checked in with the sitter all day because I didn't like the sound of his cough. She said he looked pale but he insisted he was feeling good. (Oh, by the way, he took a nap every day this week. !!! That is unheard of.) They went to the park, and when they got back, he was so exhausted he couldn't stand it. He wanted to call me, and he told me, "Mama, I'm in rough shape." :) I asked if he needed to go to the doctor, and he said yes. So I got him in that afternoon, and it turns out he has the FLU!!! Awww, poor kid! He got some tamiflu, and actually today he felt much better. I only saw him laying on the couch tonight. He kept saying things like, "It's getting late!" and "I'm I going to stay up all night?" Finally I said, "Do you want to go to bed?" and he said yes! That is just not right for a 4 year old. Now let's just all pray Georgia doesn't get it.
One more story. This evening we were all tired and it was getting near bedtime, and I was trying to just sit in my chair and check my email, but everytime I sat down, one of the kids or the dog wanted something. One would want a snack, then I'd sit down and then other would decide they wanted a snack too. Then when I sat down, one would remind me they needed a drink, then Maggie wanted to go out. Finally I said, "Oh, kids, you are wearing me out!" Nate said, "Mama, why don't you just sit on the couch and rest?" Hmm, I hadn't thought of that, thanks! Not 3 minutes later, Georgia was demanding to get down from her high chair, and when I got up, Nate scolded me, "Mama, I thought you were going to rest!"
But there's a big difference here. As a baby, Nate couldn't walk and was happy as a little puppy to just sit in my lap listening to stories for as long as I would read them. Up until recently, she couldn't sit still long enough to get through the shortest of baby board books. Usually at bedtime, I have been reading a few stories to Nate while Georgia wanders around his room looking for trouble, pulling books off his bookshelf, taking wipes out of the box, climbing on top of me, jumping on Nate's bed, etc.
 |
| Who, me? |
Picture of a Girl=Baby!
Picture of a Boy=Nayyy! (Nate)
Shirt=Shut!
Pants=Shut!
Socks=Shocks!
Shoes=Shewwws!
Cup=Miwlk!
Ball=Baw!
Car=Caw!
Boat=Caw!
Teddy bear=Baby!
Banana=Nana!
Cat=PSSSSSSTTTTT!!!!! (Oh no, that's what she thinks a cat is called now, cause that's the noise I make every time our cat is around to get her to stop doing whatever annoying thing she is doing!)
Potty=Paw-ee
Dog=Doggy
Okay, great, so she is doing pretty well with all those first words! Now we move on to the animals ... we have a lot of work ahead of us, lol.
Penguin=Quack Quack
Rabbit=Doggy
Fish=Ish (we actually have fish, so that's why she knows that one)
Goat=Doggy
Butterfly=jumbled nonsense ... pretty sure she's trying to say butterfly
Zebra=Doggy
Lion=Doggy
Macaw=Quack Quack
Tiger=Doggy
Goose=Quack Quack
Kitten=PSSSSSSTTTT!!!
Pig=Doggy
Hen=Quack Quack
.... You get the idea.
Then there's another book about colors that shows a lot of different types of fruits. She calls some fruits (oranges, apples, blueberries) "baw" and all of the other fruits (pears, grapes) "nana". Still scratching my head on that one. But she cracks me up with the enthusiasm in which she answers with the wrong answer.
 |
| Georgia also likes to dress up ... |
 |
| All the time, with whatever she can find. |
 |
| And whatever Nate is doing ... |
 |
| Georgia does it too! |
Well, Georgia is not the only little bookworm in the house. Nate has always loved books, and we always read several before bed. About a year ago, I bought him some BOB books that help children learn to read. Uh, he was three. I was pushing it a little. So every few months I've brought them out for him to look at and see if he had any interest. Last month, he started getting it!!! Now he can read several of these Bob books, and when we pick up a new one, he needs a little help sounding out a few new words, but dude, he is reading!!!! I have a video of him reading an entire one of those books in like a minute, but I guess the video is too big to load on the blog. I'm so proud--I knew my little boy was smart. Reading at 4.5! (Listen, I haven't had too many chances to brag about how "advanced" Nate is in his short little life of therapies and motor delays, so just go with it.)
AND he can draw! This has been an area of major delay with Nate, but today he drew this awesome self-portrait--best I have ever seen from him! AND he can write his name! Okay, I'll stop now.
Anyway, Memaw knows just how much Nate and Georgia loves books, so when she last visited, she brought them a special Valentine's gift--a book that has her voice recorded reading it! Almost every night Nate has asked for Memaw to read him a book, so I bring it out. :) Georgia is very interested and a little confused at this. There's one part of the book where she whispers and then gets really loud, and Nate gets so excited about this part that he shakes and giggles every time.
Okay, in other non-reading news, Nate has been sick this week.
Monday evening he was very whiny ... like moaning and laying on the couch with Blake. When I got home, I saw he was running a fever. The next morning he still had a fever, so Blake and I tag teamed that day so the kids could stay home. Nate layed on the couch almost the entire day. On Wednesday he didn't have a fever, so I took him to the sitter's, but he was still very tired and clingy. I thought for sure he would get over this any minute. Then Thursday he was feeling a little better, but I checked in with the sitter all day because I didn't like the sound of his cough. She said he looked pale but he insisted he was feeling good. (Oh, by the way, he took a nap every day this week. !!! That is unheard of.) They went to the park, and when they got back, he was so exhausted he couldn't stand it. He wanted to call me, and he told me, "Mama, I'm in rough shape." :) I asked if he needed to go to the doctor, and he said yes. So I got him in that afternoon, and it turns out he has the FLU!!! Awww, poor kid! He got some tamiflu, and actually today he felt much better. I only saw him laying on the couch tonight. He kept saying things like, "It's getting late!" and "I'm I going to stay up all night?" Finally I said, "Do you want to go to bed?" and he said yes! That is just not right for a 4 year old. Now let's just all pray Georgia doesn't get it.
One more story. This evening we were all tired and it was getting near bedtime, and I was trying to just sit in my chair and check my email, but everytime I sat down, one of the kids or the dog wanted something. One would want a snack, then I'd sit down and then other would decide they wanted a snack too. Then when I sat down, one would remind me they needed a drink, then Maggie wanted to go out. Finally I said, "Oh, kids, you are wearing me out!" Nate said, "Mama, why don't you just sit on the couch and rest?" Hmm, I hadn't thought of that, thanks! Not 3 minutes later, Georgia was demanding to get down from her high chair, and when I got up, Nate scolded me, "Mama, I thought you were going to rest!"
Wednesday, February 9, 2011
My MOMS story
I was sitting at my desk today when I read that the results of the MOMS study had been released, and they've concluded that fetal surgery repair of Spina Bifida really does improve the outcome for babies who have SB. And not just the decreased risk for the shunt--also in mobility. This is huge. And all these memories and emotions came back from nearly five years ago when we first learned about MOMS.
It was the day after I received the diagnosis at 20 weeks gestation that my baby boy had Spina Bifida. I took the day off work and was on bedrest because I'd had an amnio the day before, but I knew even without medical advice I would have spent most of the day in bed anyway. I remember dragging myself out of bed to my computer to google Spina Bifida, then after a few minutes, crawling back into bed to cry some more. That's the day I decided on Nate's name--Nathaniel means "Gift from God"--and when I got brave enough to drag myself back to the computer, I stumbled across a picture of a little boy who has Spina Bifida holding a cane. Now I wish I remembered the boy's name, but all I remember was that he looked so healthy and "normal." I could deal with this picture. The caption said he'd had fetal surgery at Vanderbilt. HOPE! I found hope! There was something I could DO! This could help!
After some more internet searching, I found a phone number for Mary Dabrowiak at Vanderbilt. I acted as brave as I could and told her we wanted fetal surgery. She asked me when we got the diagnosis and I told her just yesterday. "Oh honey," she said. Then she explained that it wasn't that simple, that there was a study, and if we decided we wanted to join the study, there was still a 50% chance we would be randomized to postnatal. I contacted the MOMS study, and after three weeks of intense phone conversations with them, praying, worrying, and a few glitches that threatened to delay us, we arrived at Vanderbilt for our two-day consultation. I had to pack for what might be a two day stay or a four month stay. If we decided to do the surgery and were randomized to fetal surgery, there would be no time to go back home.
Nate and I had lots of tests--a fetal echochardiogram, several ultrasounds of the brain and spine, and an MRI--a first for me, and the first of many for Nate. But three conversations from those two days stand out the most to me, and they all occurred on the second day. That morning, we were scheduled to meet with Dr. Tulipan, the neurosurgeon who performs the surgery. I was so excited and hopeful to meet him, because he was a pioneer for fetal surgery for SB. Mary and Tracy gave us a vague warning to have questions prepared because he wasn't very talkative. So my first question was something to the effect of, "Will fetal surgery help our son?" Based on Nate's level of L2, he said that even with the fetal surgery, he would need a shunt and would be using a wheelchair by the time he was in high school. Well, I now understand that a shunt and wheelchair are not by any means the end of the world, but at the time, that's what it felt like. I cried the rest of the appointment while Blake tried to ask questions. All my hopes were crushed.
We also met with Dr. Walsh, the neonatologist. He was so kind, and unlike the others in the study who were so guarded and emphasized the risks so much that it seemed like they were talking you out of it, he expressed hope. He told us the risks of prematurity but that if I could make it to 32 weeks, the benefits of the surgery would outweigh the risks of prematurity. I held onto that.
And lastly we met with an ethitist. I'm still not quite sure what an ethitist actually does, but he was a lot like a psychologist. He asked us a lot of hard questions to make us fully think through this decision. The question I remember most was when he asked, "Why do you want to do this surgery?" When I said it was because I wanted to DO something--I couldn't stand the thought of just sitting around waiting--he said, "But what if this thing that you DO actually causes more harm than good?" Ouch. And that was a very good question.
Blake and I went back to our hotel, both of us so exhausted from all the emotions of the day. We had to make a decision that night whether we wanted to join the study. Blake was leaning toward not doing it. "Dr. Tulipan himself said it wouldn't help! Why would we put you and Nate at risk for something that won't help?" But I kept thinking, "But what if it WILL help?" Blake told me he would defer the decision to me. I needed some time alone to pray, so he left to get us some dinner. I prayed HARD--weeping, desperate prayer:
God, we have no idea what to do! This could help him, or it could hurt him or kill him. We can't see the future! How are we supposed to know which decision to make? Only you can see the future--please, show me what to do!
He was merciful and answered me quickly. "Let Me Decide." I didn't hear it audibly, but those are the words that came to me, on my mind and heart. And I felt such peace because I knew exactly what that meant. Join the study, and let God take over from there. I then remembered talking to my dad a couple weeks before about the uncertainty of being randomized, and he had said, "God controls computers too." I didn't cry any more that night. Blake and I felt total peace about the decision, because it wasn't our arbitrary decision that we might someday regret if something went wrong. The one who knows the future made the decision for us, and we trusted him.
The next morning, we sat in the room with the ethitist, Mary, and (I think) Dr. Yang (the head MOMS doc at the time). They asked if we had any questions. No. They asked if we wanted to join the study. We said yes. Are you sure? Yes. It was so surreal; two minutes later, we were across the hall at Mary's computer, and she pushed a button and then up popped the message that we were randomized to fetal surgery. I was not at all surprised. After about a minute, I asked where the bathroom was. Mary asked if I was going to be sick, and I told her no, just pregnant and have to go to the bathroom! It was so strange how calm we were about the whole process.
If you are interested in what happened after that, you can read Excerpts from my pregnancy journal here. But today, as the positive results of this study were announced in national media, I have thought so much about those days of uncertainty. Joining the study was a total leap of faith, and we have never regretted our decision. Not because it wasn't scary, because it was--when my water broke at 28 weeks, when he was born at 32 weeks, when he wouldn't wean off oxygen for what seemed like eternity, when he was forever sick as a baby. But we have never regretted it because we are positive that it's what God intended for us to do with Nate. Since Nate's birth, we've often wondered if the surgery really helped Nate or if this is how he would have functioned anyway. I have always given credit for him not needing a shunt to the fetal surgery, because that was a benefit that had been proven early on. Now they report that fetal surgeries babies are half as likely to need a shunt. As for the walking independently and functioning 4 levels below what he should (should be L2, functions as S1), I wasn't so sure if that was a result of the study or just the particulars of Nate's condition. But now the study reports that fetal surgery babies are more than twice as likely to be walking independently at 30 months. And Nate didn't even help that statistic because he was still walking in his walker when we went back for his 30 month assessment.
What's also interesting is that the study reports that only 15% of people who inquired about the study actually participated, either because they did not qualify for one reason or another or could not commit to the rigorous requirements demanded from the study. And now maybe more people will choose to participate if they qualify, but I truly believe that this is not for everyone. The prematurity risk is very real, and I can attest that it is serious and scary. And some people logistically just absolutely cannot pack up their entire lives for 6 months and go live near one of the hospitals. Especially those that have children--if I had to make this decision for my second child (not knowing what I know now), I'm not sure what I would have done.
I have hugged and kissed on Nate and told him I loved him tonight to the point that he started looking at me funny. I feel so grateful that we were a small part of a historically important medical study that could fundamentally change the future of Spina bifida. I'm indescribably grateful that it made a difference for him. And the whole experience of being at that place of brokenness and finding hope and relying on God was a defining moment in my life that changed everything. (Take THAT, Dr. Tulipan!)
It was the day after I received the diagnosis at 20 weeks gestation that my baby boy had Spina Bifida. I took the day off work and was on bedrest because I'd had an amnio the day before, but I knew even without medical advice I would have spent most of the day in bed anyway. I remember dragging myself out of bed to my computer to google Spina Bifida, then after a few minutes, crawling back into bed to cry some more. That's the day I decided on Nate's name--Nathaniel means "Gift from God"--and when I got brave enough to drag myself back to the computer, I stumbled across a picture of a little boy who has Spina Bifida holding a cane. Now I wish I remembered the boy's name, but all I remember was that he looked so healthy and "normal." I could deal with this picture. The caption said he'd had fetal surgery at Vanderbilt. HOPE! I found hope! There was something I could DO! This could help!
After some more internet searching, I found a phone number for Mary Dabrowiak at Vanderbilt. I acted as brave as I could and told her we wanted fetal surgery. She asked me when we got the diagnosis and I told her just yesterday. "Oh honey," she said. Then she explained that it wasn't that simple, that there was a study, and if we decided we wanted to join the study, there was still a 50% chance we would be randomized to postnatal. I contacted the MOMS study, and after three weeks of intense phone conversations with them, praying, worrying, and a few glitches that threatened to delay us, we arrived at Vanderbilt for our two-day consultation. I had to pack for what might be a two day stay or a four month stay. If we decided to do the surgery and were randomized to fetal surgery, there would be no time to go back home.
Nate and I had lots of tests--a fetal echochardiogram, several ultrasounds of the brain and spine, and an MRI--a first for me, and the first of many for Nate. But three conversations from those two days stand out the most to me, and they all occurred on the second day. That morning, we were scheduled to meet with Dr. Tulipan, the neurosurgeon who performs the surgery. I was so excited and hopeful to meet him, because he was a pioneer for fetal surgery for SB. Mary and Tracy gave us a vague warning to have questions prepared because he wasn't very talkative. So my first question was something to the effect of, "Will fetal surgery help our son?" Based on Nate's level of L2, he said that even with the fetal surgery, he would need a shunt and would be using a wheelchair by the time he was in high school. Well, I now understand that a shunt and wheelchair are not by any means the end of the world, but at the time, that's what it felt like. I cried the rest of the appointment while Blake tried to ask questions. All my hopes were crushed.
We also met with Dr. Walsh, the neonatologist. He was so kind, and unlike the others in the study who were so guarded and emphasized the risks so much that it seemed like they were talking you out of it, he expressed hope. He told us the risks of prematurity but that if I could make it to 32 weeks, the benefits of the surgery would outweigh the risks of prematurity. I held onto that.
And lastly we met with an ethitist. I'm still not quite sure what an ethitist actually does, but he was a lot like a psychologist. He asked us a lot of hard questions to make us fully think through this decision. The question I remember most was when he asked, "Why do you want to do this surgery?" When I said it was because I wanted to DO something--I couldn't stand the thought of just sitting around waiting--he said, "But what if this thing that you DO actually causes more harm than good?" Ouch. And that was a very good question.
Blake and I went back to our hotel, both of us so exhausted from all the emotions of the day. We had to make a decision that night whether we wanted to join the study. Blake was leaning toward not doing it. "Dr. Tulipan himself said it wouldn't help! Why would we put you and Nate at risk for something that won't help?" But I kept thinking, "But what if it WILL help?" Blake told me he would defer the decision to me. I needed some time alone to pray, so he left to get us some dinner. I prayed HARD--weeping, desperate prayer:
God, we have no idea what to do! This could help him, or it could hurt him or kill him. We can't see the future! How are we supposed to know which decision to make? Only you can see the future--please, show me what to do!
He was merciful and answered me quickly. "Let Me Decide." I didn't hear it audibly, but those are the words that came to me, on my mind and heart. And I felt such peace because I knew exactly what that meant. Join the study, and let God take over from there. I then remembered talking to my dad a couple weeks before about the uncertainty of being randomized, and he had said, "God controls computers too." I didn't cry any more that night. Blake and I felt total peace about the decision, because it wasn't our arbitrary decision that we might someday regret if something went wrong. The one who knows the future made the decision for us, and we trusted him.
The next morning, we sat in the room with the ethitist, Mary, and (I think) Dr. Yang (the head MOMS doc at the time). They asked if we had any questions. No. They asked if we wanted to join the study. We said yes. Are you sure? Yes. It was so surreal; two minutes later, we were across the hall at Mary's computer, and she pushed a button and then up popped the message that we were randomized to fetal surgery. I was not at all surprised. After about a minute, I asked where the bathroom was. Mary asked if I was going to be sick, and I told her no, just pregnant and have to go to the bathroom! It was so strange how calm we were about the whole process.
If you are interested in what happened after that, you can read Excerpts from my pregnancy journal here. But today, as the positive results of this study were announced in national media, I have thought so much about those days of uncertainty. Joining the study was a total leap of faith, and we have never regretted our decision. Not because it wasn't scary, because it was--when my water broke at 28 weeks, when he was born at 32 weeks, when he wouldn't wean off oxygen for what seemed like eternity, when he was forever sick as a baby. But we have never regretted it because we are positive that it's what God intended for us to do with Nate. Since Nate's birth, we've often wondered if the surgery really helped Nate or if this is how he would have functioned anyway. I have always given credit for him not needing a shunt to the fetal surgery, because that was a benefit that had been proven early on. Now they report that fetal surgeries babies are half as likely to need a shunt. As for the walking independently and functioning 4 levels below what he should (should be L2, functions as S1), I wasn't so sure if that was a result of the study or just the particulars of Nate's condition. But now the study reports that fetal surgery babies are more than twice as likely to be walking independently at 30 months. And Nate didn't even help that statistic because he was still walking in his walker when we went back for his 30 month assessment.
What's also interesting is that the study reports that only 15% of people who inquired about the study actually participated, either because they did not qualify for one reason or another or could not commit to the rigorous requirements demanded from the study. And now maybe more people will choose to participate if they qualify, but I truly believe that this is not for everyone. The prematurity risk is very real, and I can attest that it is serious and scary. And some people logistically just absolutely cannot pack up their entire lives for 6 months and go live near one of the hospitals. Especially those that have children--if I had to make this decision for my second child (not knowing what I know now), I'm not sure what I would have done.
I have hugged and kissed on Nate and told him I loved him tonight to the point that he started looking at me funny. I feel so grateful that we were a small part of a historically important medical study that could fundamentally change the future of Spina bifida. I'm indescribably grateful that it made a difference for him. And the whole experience of being at that place of brokenness and finding hope and relying on God was a defining moment in my life that changed everything. (Take THAT, Dr. Tulipan!)
Sunday, February 6, 2011
Nate and Georgia and the train show
The Great Train Expo is something that Nate (and let's be honest, Blake too) looks forward to all year long. This is our 3rd year going. Just a few days ago I thought about it and wondered if we had missed it, and when I searched for it online, I saw it was this weekend. I texted Blake: "Great Train Expo this weekend!!!!" He texted back: "I'm so in!" We are dorks. We didn't say anything about it to Nate, but on Friday night a commercial about it came on TV, and Nate got all excited and asked if we could go. Sure! :) From then on, he called it, "The new train show I sawed on TV." If we referred to it by anything else, he corrected us. He was so proud that he thought he was the one who found it.
Today was a very big day. Nate wanted to go to "The new train show I sawed on TV" first thing, but we insisted on church first. As soon as we got to church, we found a problem. Georgia's new shoes were too big on her. To be more exact, one of her shoes was too big. Her feet are different sizes. The one shoe kept falling off, and there was no way she could walk in them. Once we got into church, I took her shoes off and she trotted around with just her tights over her feet. But I knew this would create a problem later. Anyway, it was a great service, and both kids had a great time at church. Georgia is getting to the point where when its time to hand her over to the nursery worker, she actually reaches for them instead of screaming! Wow! And Nate always tells us about the Bible story he learned about and we usually catch him singing a song he learned in chapel.
Anyway, the plan was to go straight from church to "The new train show I sawed on TV" but Georgia's shoe issue created a problem. There's no way we were going to be able to keep her in the stroller the whole time, and I didn't like Blake's idea of letting her walk around the convention center without shoes. But Blake and Nate did not want to waste any train time by going back home to get shoes, so I told Blake he could be the one to deal with a cranky Georgia the whole time. :)
Nate was so excited, he ran the whole way from the car to the show.
Dressed for the occasion.
At one of the layouts, Nate asked the operator, "So, what guage is this train?" The guy said, "This is N-scale." Nate: "Oh, okay." Ha!
At this point, Georgia was still hanging out in the stroller.
Miraculously, I saw a guy selling baby shoes. Shoes! At a train show! Well, they were baby squeaky shoes that had a train on them. I asked if he had any girl shoes, and he pulled out several boxes of pink squeaky shoes! Squeaky, you ask? Yes, every step she takes, they squeak ... intentionally. She was so proud of these shoes. She walked slowly, took big steps, ran ... they all made different sounds. Everyone she squeaked past commented on her squeaky shoes. And yes, after awhile they were somewhat annoying, but she absolutely loves them. And I was happy that she could finally get down and run around and enjoy herself! Look how cute, her saying, "Cheeeeeese!"
Here's the video of trotting while squeaking. (For those seeing this on email or facebook, click here to see video.)
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