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.
Monday, February 21, 2011
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 ...
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| Scared face |
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| 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.
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| 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.
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| Georgia also likes to dress up ... |
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| All the time, with whatever she can find. |
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| And whatever Nate is doing ... |
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| 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.)
Thursday, January 27, 2011
Welcome to my life
I just thought I'd share a day in my life. This day was fairly typical for me, and maybe for you too. Some days, like today, I find humor in the insanity. :)
6:45--Alarm went off. Rolled over and smacked Blake on the arm and said "First alarm"
6:52--Alarm went off. Rolled over and smacked Blake on the arm and said "Second alarm"
6:59--"It's 7 o'clock! I'm turning it off!" He got up and got in the shower. I hid my head in the covers and tried to sleep longer. Georgia had woken me at 4-something and it had taken awhile to go back to sleep, so I was super tired.
7:45--Alarm went off. Snooze.
7:52--Crap, I have to get up! I showered and prayed that neither of the kids would wake up and start screaming while I was in there. I have a hard time dealing with screaming in the morning.
8:15--Heard Nate talking so I went in his room and told him I was getting ready and he could come in my room "all by himself" anytime he wanted. (We're working on this.)
8:20--He came in my room all by himself! We went downstairs and got Nate dressed in his uniform for school, braces and shoes, teeth brushed. This morning to avoid a tooth-brushing fit, I made up a song called "Special Agent Toothbrush!"
8:35--We negotiated breakfast. (I have good reasons for brushing teeth before breakfast but don't feel like going into them.) Decided on french toast sticks and blueberries with milk. I also made some for Georgia, who was still sleeping, and put them in a ziplock bag. Made Nate's breakfast and put my purse and his backpack in the car.
8:45--Decided I really did have to wake up Georgia now. Poor thing was sleeping so soundly, but as soon as I started rubbing her back she immediately stood up, like "Let's go!" Got her dressed and carried her straight to the car. As we were passing the kitchen, she started saying "Milk! Milk!" Haha, I already had it waiting for her in the car along with her blueberries and french toast! Got Nate's coat on and put him in the car.
8:55--Pull out of the garage but see my neighbor's van spinning out on the street because it's iced over. Hmm. Are either of us going to be able to leave? I suggested she back up to a snowy part and then gun it. It worked! I did the same. When turning onto another street in my neighborhood, the back end of the car got away from me and we nearly went up into a neighbor's yard. Oops! Once we got on the main road, we were fine.
9 am--So, we were going to behavioral therapy, which is about a 30 minute drive to downtown. It's actually very close to my work. Everytime we drive there, I think about how crazy it is that after leaving there, I have to drive all the way back to our part of town to drop the kids off at the sitter, who lives 5 minutes from us, THEN drive 30 minutes back in the same direction we came from to go back to work. There must be a better way, but I haven't figured it out just yet. Nate likes the drive because we get to go through a tunnell and I honk the horn to the tune of "Shave and a haircut."
9:24--We weren't late! I held tight to the kids' hands as we walked across the snowy parking lot. As usual, Nate heard a train whistle long before I even registered it. He said it was a "very quiet train." I explained it was just far away. When we got in the building, as usual the kids thought the elevators were like a super fun ride. Inside, they are poised and ready and when the doors open, they both take off like horses out of a gate.
9:30--Miss Darcy invited us all in her office. As I was telling her about Nate's (challenging) week, they were playing Legos together in the floor. Nate threw one at her face, and she put them away. They practiced throwing a soft ball, and when Nate started getting too overstimulated from their game, she made him take deep breathes. We talked about his school situation and how we might handle his misbehavior with his teachers.
10:37--As we were toddling back to the car, I told Nate I thought a treat was in order. We stopped at Krispy Kreme for "donut balls" as Nate calls donut holes. Georgia really liked them too.
11:10--Got the kids to the babysitter. This was the first time we were able to fill out a timesheet for Nate's attendant care to reimburse her, so we went over that for awhile. As I was leaving, Georgia stood at the door smiling and waving and yelling "Bye! Bye!" (said in a very southern accent)
11:15--Arrived back at my house and as I was getting out of the car I realized I forgot to give the babysitter Nate's backpack! It was still in my passenger seat! Texted her that I would meet her at the school for drop off. You might be wondering why I went back home after dropping the kids off. Well, at about midnight last night, I remembered our Medicaid support broker was supposed to come by the house this afternoon after Blake got home with the kids. I couldn't stand the thought of anyone seeing my house in the shape it was in, so I spent the next hour straightening, vacuuming, wiping, etc.
12pm--Bekah called and said she would be happy to pack Nate a lunch so I didn't have to bring the backpack to the school. I said I didn't mind. I heard Nate saying he wanted Bekah to pack his lunch--he wanted a peanut butter sandwich and grapes and ...--so I said that was fine.
12:15--Bekah called and said Nate changed his mind and wanted his Thomas backpack and Cars lunchbox after all. :)
12:30--Dropped the backpack off with a teacher aid at school and went on my way to work. I already needed a nap. Called Blake and briefed him on the behavioral therapy session. We tried to make a game plan for what Nate's consequences would be if he came home on red again today, but we couldn't come up with anything good.
12:57--As I was pulling in the parking lot at work, I realized I forgot to pay the sitter for Georgia for the week! Where is my head?
1--Work, work, work. Good, interesting, productive day. I finished the newsletter--Yay! I heard back from a speaker confirming a class we wanted to have in Lexington--Yay! I had a great conversation and set up a face to face meeting with a key medical professional that we've been wanting to meet with for awhile--Yay! I worked on the speaker contract for our exciting keynote speaker for our Day Conference in April--Yay! And most exciting of all, I finally sat down and typed out the calendar of programs I've already scheduled for 2011, and it is AWESOME! Yay, yay!
5--Blake called to let me know that Nate came home on red again. Boo! When Miss Joan asked him to come to the potty, he said no. Then when they asked him to put away the toys at the end of the day, he said no. (Okay, obviously this is not good behavior, but it's not like he's demonstrating deviant behavior, you know? He's not hitting or biting or cursing ... he's being stubborn. Is this "red"-worthy behavior? Apparently. We decided the consequence would be no TV, and then Nate had to come up with further consequences. He chose no food. :) Blake said he couldn't withold food, so then they decided no music. Blake put up the drums and guitar. They ended up playing ball and reading and singing all evening. If he keeps coming home on red, we might as well cancel cable.
6--Our first board meeting of the year. We had a couple consultants there, and it was an interesting meeting that left everyone with challenging, good work to accomplish.
8:37--Drive home with a migraine.
9:30--Blake and I are ready for bed! As we went upstairs, we heard Nate talking in his room. I went in to check on him, and when I stroked his forehead I realized he was REALLY hot. Took his temp--102.9--and gave Motrin.
11:20--Blogging in bed, while Blake is snoring and Nate is laying beside me watching the Upside Down Show. Wondering why he has a fever, if he has an ear infection, if he'll need to go to the doctor tomorrow, if we'll need to cancel OT at 9 am, if they're going to cancel anyway because it's supposed to snow, and if I should go to Nate's school in the morning and talk with his teacher about the behavior issues.
It was a pretty good day.
6:45--Alarm went off. Rolled over and smacked Blake on the arm and said "First alarm"
6:52--Alarm went off. Rolled over and smacked Blake on the arm and said "Second alarm"
6:59--"It's 7 o'clock! I'm turning it off!" He got up and got in the shower. I hid my head in the covers and tried to sleep longer. Georgia had woken me at 4-something and it had taken awhile to go back to sleep, so I was super tired.
7:45--Alarm went off. Snooze.
7:52--Crap, I have to get up! I showered and prayed that neither of the kids would wake up and start screaming while I was in there. I have a hard time dealing with screaming in the morning.
8:15--Heard Nate talking so I went in his room and told him I was getting ready and he could come in my room "all by himself" anytime he wanted. (We're working on this.)
8:20--He came in my room all by himself! We went downstairs and got Nate dressed in his uniform for school, braces and shoes, teeth brushed. This morning to avoid a tooth-brushing fit, I made up a song called "Special Agent Toothbrush!"
8:35--We negotiated breakfast. (I have good reasons for brushing teeth before breakfast but don't feel like going into them.) Decided on french toast sticks and blueberries with milk. I also made some for Georgia, who was still sleeping, and put them in a ziplock bag. Made Nate's breakfast and put my purse and his backpack in the car.
8:45--Decided I really did have to wake up Georgia now. Poor thing was sleeping so soundly, but as soon as I started rubbing her back she immediately stood up, like "Let's go!" Got her dressed and carried her straight to the car. As we were passing the kitchen, she started saying "Milk! Milk!" Haha, I already had it waiting for her in the car along with her blueberries and french toast! Got Nate's coat on and put him in the car.
8:55--Pull out of the garage but see my neighbor's van spinning out on the street because it's iced over. Hmm. Are either of us going to be able to leave? I suggested she back up to a snowy part and then gun it. It worked! I did the same. When turning onto another street in my neighborhood, the back end of the car got away from me and we nearly went up into a neighbor's yard. Oops! Once we got on the main road, we were fine.
9 am--So, we were going to behavioral therapy, which is about a 30 minute drive to downtown. It's actually very close to my work. Everytime we drive there, I think about how crazy it is that after leaving there, I have to drive all the way back to our part of town to drop the kids off at the sitter, who lives 5 minutes from us, THEN drive 30 minutes back in the same direction we came from to go back to work. There must be a better way, but I haven't figured it out just yet. Nate likes the drive because we get to go through a tunnell and I honk the horn to the tune of "Shave and a haircut."
9:24--We weren't late! I held tight to the kids' hands as we walked across the snowy parking lot. As usual, Nate heard a train whistle long before I even registered it. He said it was a "very quiet train." I explained it was just far away. When we got in the building, as usual the kids thought the elevators were like a super fun ride. Inside, they are poised and ready and when the doors open, they both take off like horses out of a gate.
9:30--Miss Darcy invited us all in her office. As I was telling her about Nate's (challenging) week, they were playing Legos together in the floor. Nate threw one at her face, and she put them away. They practiced throwing a soft ball, and when Nate started getting too overstimulated from their game, she made him take deep breathes. We talked about his school situation and how we might handle his misbehavior with his teachers.
10:37--As we were toddling back to the car, I told Nate I thought a treat was in order. We stopped at Krispy Kreme for "donut balls" as Nate calls donut holes. Georgia really liked them too.
11:10--Got the kids to the babysitter. This was the first time we were able to fill out a timesheet for Nate's attendant care to reimburse her, so we went over that for awhile. As I was leaving, Georgia stood at the door smiling and waving and yelling "Bye! Bye!" (said in a very southern accent)
11:15--Arrived back at my house and as I was getting out of the car I realized I forgot to give the babysitter Nate's backpack! It was still in my passenger seat! Texted her that I would meet her at the school for drop off. You might be wondering why I went back home after dropping the kids off. Well, at about midnight last night, I remembered our Medicaid support broker was supposed to come by the house this afternoon after Blake got home with the kids. I couldn't stand the thought of anyone seeing my house in the shape it was in, so I spent the next hour straightening, vacuuming, wiping, etc.
12pm--Bekah called and said she would be happy to pack Nate a lunch so I didn't have to bring the backpack to the school. I said I didn't mind. I heard Nate saying he wanted Bekah to pack his lunch--he wanted a peanut butter sandwich and grapes and ...--so I said that was fine.
12:15--Bekah called and said Nate changed his mind and wanted his Thomas backpack and Cars lunchbox after all. :)
12:30--Dropped the backpack off with a teacher aid at school and went on my way to work. I already needed a nap. Called Blake and briefed him on the behavioral therapy session. We tried to make a game plan for what Nate's consequences would be if he came home on red again today, but we couldn't come up with anything good.
12:57--As I was pulling in the parking lot at work, I realized I forgot to pay the sitter for Georgia for the week! Where is my head?
1--Work, work, work. Good, interesting, productive day. I finished the newsletter--Yay! I heard back from a speaker confirming a class we wanted to have in Lexington--Yay! I had a great conversation and set up a face to face meeting with a key medical professional that we've been wanting to meet with for awhile--Yay! I worked on the speaker contract for our exciting keynote speaker for our Day Conference in April--Yay! And most exciting of all, I finally sat down and typed out the calendar of programs I've already scheduled for 2011, and it is AWESOME! Yay, yay!
5--Blake called to let me know that Nate came home on red again. Boo! When Miss Joan asked him to come to the potty, he said no. Then when they asked him to put away the toys at the end of the day, he said no. (Okay, obviously this is not good behavior, but it's not like he's demonstrating deviant behavior, you know? He's not hitting or biting or cursing ... he's being stubborn. Is this "red"-worthy behavior? Apparently. We decided the consequence would be no TV, and then Nate had to come up with further consequences. He chose no food. :) Blake said he couldn't withold food, so then they decided no music. Blake put up the drums and guitar. They ended up playing ball and reading and singing all evening. If he keeps coming home on red, we might as well cancel cable.
6--Our first board meeting of the year. We had a couple consultants there, and it was an interesting meeting that left everyone with challenging, good work to accomplish.
8:37--Drive home with a migraine.
9:30--Blake and I are ready for bed! As we went upstairs, we heard Nate talking in his room. I went in to check on him, and when I stroked his forehead I realized he was REALLY hot. Took his temp--102.9--and gave Motrin.
11:20--Blogging in bed, while Blake is snoring and Nate is laying beside me watching the Upside Down Show. Wondering why he has a fever, if he has an ear infection, if he'll need to go to the doctor tomorrow, if we'll need to cancel OT at 9 am, if they're going to cancel anyway because it's supposed to snow, and if I should go to Nate's school in the morning and talk with his teacher about the behavior issues.
It was a pretty good day.
Wednesday, January 19, 2011
Behavior ISSUES
Nate is making us feel like crappy parents. We have NO IDEA what to do with this child.
Before the holidays, I decided to look into a behavioral therapist for Nate, for two reasons: 1. to stop the screaming, and 2. to help us figure out how to potty train him. We started seeing Miss Darcy, and she is very sweet and is really getting to know Nate to address our issues.
In the meantime, Nate has experienced a lot of changes. We now have a new babysitter. We knew this would be a huge adjustment for both kids, but it was unavoidable. The new sitter, Bekah, watches the kids out of her home instead of ours. She is wonderful, and both of the kids adore her. Our schedule used to be that Blake was home in the mornings and I was home in the evenings, but suddenly (like the same day the kids started at the new sitter), Blake's boss told him his schedule had to change to 8-5. After a very stressful week, Memaw and GrandBob coming for a couple of days to help out, and much discussion, our schedule is starting to regulate again. Now I drop the kids off at Bekah's at 9:30 am, she takes Nate to school at 12:30, then Blake picks up Nate from school and Georgia from the sitter. On Fridays, Blake is off work and will (this starts this week) take Nate to both OT and PT back to back. We have one other therapy (behavioral therapy) that we still have to find a permanent time for. But you can see that this has been a huge transition for all of us, and Nate has a VERY difficult time with all transitions.
If I could describe Nate with one word right now, it would be "resistant." He has always been a very resistant child--since the time he was a newborn--but he goes through stages when it is so much worse. We attribute much of this to his sensory issues, but the reason for it doesn't help much when we're trying to figure out how to stop it.
For example. Two Sundays ago, I went in Nate's room when he first woke up, and as always, he asked what day it was and what we were doing that day. I told him we were going to go to church--"I love church!!!--then we were going to a birthday party--"Gasp! A birthday party? Will there be cake?"--and then Bible Study--"I LOVE Bible Study!" We were all set to have a great day. When it was time to get in the car for church, he changed his tune. "I don't like church. I don't want to go to church" all the way there. When it was time to leave church, he cried, "I don't want to leave church! I love church!" and I had to drag him crying out the door. Next it was "I don't like birthday parties! I don't want to go!" followed by "I don't want to go home! I want to stay at the birthday party!" As you might guess, he whined the whole way to Bible study and then had so much fun that I had to literally drag him out the door screaming when it was time to leave. Whew! That is an exhausting day. Seriously, nothing is easy with him. We have to fight over everything from brushing his teeth to getting in the car.
I have decided that this resistance is our biggest hurdle right now to potty training. He is totally resistant to sitting on the potty. The week before Christmas, we actually had a lot of success with potty training. I played a game with him that every time he sat on the potty *without whining* he would get a letter on his chart, and at the end of the day, he would get whatever treat we had spelled out. By the end of the week, I was giving him "bonus challenges" (he totally loved that) to try to stay dry for a certain amount of time, and he actually DID IT! I really think it's possible that he might be able to do this. He just WON'T! After that week, he just decided he was over it. After discussing it with Miss Darcy, we decided to take a break from potty training for now and to work in therapy on decreasing his resistance to all things, hoping that will decrease his resistance to the potty. Who knows--maybe I'll potty train both kids this summer.
But the behavior issues are now showing up at school too. They have this green-yellow-red system. Last year, he came home on green every day, which meant he was well behaved at school. Last fall, we had a couple of days where he came home on yellow, which meant he had to be warned about a behavior. Well, last week, Nate came home on red TWICE. One day he was making an annoying noise during a movie, and after asking him repeatedly to stop, Nate refused to stop. The next day, he refused to put on his backpack and walk down the hallway. So when Blake came to the pick up line to get Nate, he had to get Georgia out of the car and walk down to the classroom to make Nate put on his backpack and walk down the dang hallway to go home. We have had numerous talks about this and have given consequences, so imagine my surprise when today I found out he came home on red again. He first refused to go to the bathroom to get changed (he pooped in his pull up!) and then they asked him to stop banging his markers on the table and he refused. Sigh.
The rule is that if he comes home on anything other than green, he cannot play with trains or blocks (his two favorite things to play) for the rest of the evening. He gets very upset about this, so that means it's working, right? :) Then he would not listen to me tonight when I was trying to get him ready for bed, so he had to go to bed without his beloved story time. He was so upset and was giving me every reason in the world that he couldn't sleep. From all the way downstairs I heard him yelling, "My pillow is wet!!!!" I said, "Well stop crying!" (hehe) So I flipped his pillow over, but then he complained it was cold. He told me he wanted my pillow, and that I could sleep with no pillow. I assured him his pillow was fine, and he said, "No! My pillow is cold and wet and has worms in it!" What? :)
So tonight Blake and I are going to make a rule chart that shows what the consequences are for disobeying. This is hard.
Before the holidays, I decided to look into a behavioral therapist for Nate, for two reasons: 1. to stop the screaming, and 2. to help us figure out how to potty train him. We started seeing Miss Darcy, and she is very sweet and is really getting to know Nate to address our issues.
In the meantime, Nate has experienced a lot of changes. We now have a new babysitter. We knew this would be a huge adjustment for both kids, but it was unavoidable. The new sitter, Bekah, watches the kids out of her home instead of ours. She is wonderful, and both of the kids adore her. Our schedule used to be that Blake was home in the mornings and I was home in the evenings, but suddenly (like the same day the kids started at the new sitter), Blake's boss told him his schedule had to change to 8-5. After a very stressful week, Memaw and GrandBob coming for a couple of days to help out, and much discussion, our schedule is starting to regulate again. Now I drop the kids off at Bekah's at 9:30 am, she takes Nate to school at 12:30, then Blake picks up Nate from school and Georgia from the sitter. On Fridays, Blake is off work and will (this starts this week) take Nate to both OT and PT back to back. We have one other therapy (behavioral therapy) that we still have to find a permanent time for. But you can see that this has been a huge transition for all of us, and Nate has a VERY difficult time with all transitions.
If I could describe Nate with one word right now, it would be "resistant." He has always been a very resistant child--since the time he was a newborn--but he goes through stages when it is so much worse. We attribute much of this to his sensory issues, but the reason for it doesn't help much when we're trying to figure out how to stop it.
For example. Two Sundays ago, I went in Nate's room when he first woke up, and as always, he asked what day it was and what we were doing that day. I told him we were going to go to church--"I love church!!!--then we were going to a birthday party--"Gasp! A birthday party? Will there be cake?"--and then Bible Study--"I LOVE Bible Study!" We were all set to have a great day. When it was time to get in the car for church, he changed his tune. "I don't like church. I don't want to go to church" all the way there. When it was time to leave church, he cried, "I don't want to leave church! I love church!" and I had to drag him crying out the door. Next it was "I don't like birthday parties! I don't want to go!" followed by "I don't want to go home! I want to stay at the birthday party!" As you might guess, he whined the whole way to Bible study and then had so much fun that I had to literally drag him out the door screaming when it was time to leave. Whew! That is an exhausting day. Seriously, nothing is easy with him. We have to fight over everything from brushing his teeth to getting in the car.
I have decided that this resistance is our biggest hurdle right now to potty training. He is totally resistant to sitting on the potty. The week before Christmas, we actually had a lot of success with potty training. I played a game with him that every time he sat on the potty *without whining* he would get a letter on his chart, and at the end of the day, he would get whatever treat we had spelled out. By the end of the week, I was giving him "bonus challenges" (he totally loved that) to try to stay dry for a certain amount of time, and he actually DID IT! I really think it's possible that he might be able to do this. He just WON'T! After that week, he just decided he was over it. After discussing it with Miss Darcy, we decided to take a break from potty training for now and to work in therapy on decreasing his resistance to all things, hoping that will decrease his resistance to the potty. Who knows--maybe I'll potty train both kids this summer.
But the behavior issues are now showing up at school too. They have this green-yellow-red system. Last year, he came home on green every day, which meant he was well behaved at school. Last fall, we had a couple of days where he came home on yellow, which meant he had to be warned about a behavior. Well, last week, Nate came home on red TWICE. One day he was making an annoying noise during a movie, and after asking him repeatedly to stop, Nate refused to stop. The next day, he refused to put on his backpack and walk down the hallway. So when Blake came to the pick up line to get Nate, he had to get Georgia out of the car and walk down to the classroom to make Nate put on his backpack and walk down the dang hallway to go home. We have had numerous talks about this and have given consequences, so imagine my surprise when today I found out he came home on red again. He first refused to go to the bathroom to get changed (he pooped in his pull up!) and then they asked him to stop banging his markers on the table and he refused. Sigh.
The rule is that if he comes home on anything other than green, he cannot play with trains or blocks (his two favorite things to play) for the rest of the evening. He gets very upset about this, so that means it's working, right? :) Then he would not listen to me tonight when I was trying to get him ready for bed, so he had to go to bed without his beloved story time. He was so upset and was giving me every reason in the world that he couldn't sleep. From all the way downstairs I heard him yelling, "My pillow is wet!!!!" I said, "Well stop crying!" (hehe) So I flipped his pillow over, but then he complained it was cold. He told me he wanted my pillow, and that I could sleep with no pillow. I assured him his pillow was fine, and he said, "No! My pillow is cold and wet and has worms in it!" What? :)
So tonight Blake and I are going to make a rule chart that shows what the consequences are for disobeying. This is hard.
Tuesday, January 18, 2011
Redefining Spina Bifida
Dear family and friends, just wanted to let you know about an opportunity to spread awareness about Spina Bifida and also buy *cute* stuff. A fellow SB mom came up with the idea last fall to sell a SB awareness shirt, and a SB dad all the way across the country designed the shirt. They sold them for just enough to cover the costs, but they ended up selling like 700 of them, and they sent a $1k check to the Spina Bifida Association! And now there are like 700 people around the country and even internationally wearing these shirts to spread awareness! Now they're doing another order, and I wanted you to know about it in case you'd like to participate. This time, you can choose from a t-shirt, hoodie sweatshirt, or tote bag. Again, the prices are low so everyone can afford it. This time, they will donate the proceeds of the sale to a local chapter. Whichever region sells the most, that SBA chapter will receive the money. Awesome!
Redefining SB Merchandise
I really love the message of this shirt. It's not that we just want people to know we love someone who has SB. It reminds us that our children, and all of our awareness efforts are *Redefining* Spina Bifida. The SB that existed 30 years ago? The SB that we all feared when we got this diagnosis? The preconceptions that people have when they hear those words? Throw all that out the window. Our kids are going to be able to accomplish anything in life, and their lives are going to be a testimony to God's grace and power.
So if you are interested in spreading awareness that our boy Nate and all his buddies are showing the world that Spina Bifida does not define us, please consider going to this web site and purchasing some merchandise. (It's really safe--I know this great woman who is crazy enough to do this sale). And in the comments, write "SBAK" so your order will be counted toward our chapter--if we get the most orders, the entire profit will go toward the programs that I plan and host for our Kentucky and Southern IN kids!
Wednesday, January 12, 2011
Georgia's first haircut
Georgia didn't even HAVE hair until, what, October? But I have been itching to get her hair cut because she was starting to develop quite the mullet. I thought I was being silly and had no real intentions of actually taking her for a haircut, but on Saturday I took Nate to get his cut and the lady cutting his hair agreed with me about trimming up the mullet. :)
Before ...
During ... (she loved it)
After ... (I realize, not much different)
The back curls up so cute now!
Here's Georgia in her cute little outfit Little Bitty Memaw got her for Christmas. :)
And one of Nate, with a couple cute stories. :)
Last week at school, they had pajama day. (It was a make up for Polar Express Pajama Day that got snowed out before Christmas.) Nate wanted to wear his pajamas to bed, then to OT the next morning, then to school, then to bed again! The next day, I was trying to change his clothes and he was telling me why he wanted to wear his pajamas again. He put his finger between the buttons on the pajama shirt and said, "See, it has a belly button pocket!"
That morning as we were coming down the stairs, Nate looked out the window and got excited about the snow! He said, "But there's no snow on the grass!" I said, yeah, it just stuck to the road and sidewalk. He said, "But I wanted it to be a marshmallow world!" Well, the next morning, as he was walking down the stairs, he looked out the window and saw snow covering everything! "It's a marshmallow world!"
Before ...
During ... (she loved it)
After ... (I realize, not much different)
The back curls up so cute now!
Here's Georgia in her cute little outfit Little Bitty Memaw got her for Christmas. :)
And one of Nate, with a couple cute stories. :)
Last week at school, they had pajama day. (It was a make up for Polar Express Pajama Day that got snowed out before Christmas.) Nate wanted to wear his pajamas to bed, then to OT the next morning, then to school, then to bed again! The next day, I was trying to change his clothes and he was telling me why he wanted to wear his pajamas again. He put his finger between the buttons on the pajama shirt and said, "See, it has a belly button pocket!"
That morning as we were coming down the stairs, Nate looked out the window and got excited about the snow! He said, "But there's no snow on the grass!" I said, yeah, it just stuck to the road and sidewalk. He said, "But I wanted it to be a marshmallow world!" Well, the next morning, as he was walking down the stairs, he looked out the window and saw snow covering everything! "It's a marshmallow world!"
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