Spina Bifida Association National Conference

I've been to a few conferences before, for journalism or donor relations in my past lives. When you go to a conference, you usually expect you are walking in with a fairly decent base of knowledge and that you will learn some tips, get some inspiration for how to do things better, and add to your understanding of the subject. That's how I went in to the SBA national conference, excited to learn more and meet people. Within the first hour, I was blown away to be learning about an area that I had never heard of before. I've been aggressively researching Spina Bifida for more than 4 years now, talked with hundreds of parents about their experiences, read list servs, message boards, and blogs, and I now work at a chapter. How is it possible that I've never heard of Executive Functioning? Especially since it explains so much about my child! I'll get back to that in a minute.

The kids and I met my parents in Cincinnati Sunday evening, and we headed over to the Opening Reception of the conference. We had a big group from Kentucky, and I was passing out my hand-made buttons that said, "I'm with SBAKentucky." :) I was so proud of those buttons, haha. Monday morning, Nate was to be at Kids Camp at 8:30, and it lasted until 5:30! I was really nervous about how he'd hold up--he's never been in any kind of all day program like that. At first, he was hesitant and didn't want me to leave him ... until we heard there was a rice table. It was like a big sand table filled with rice, and if you know Nate, you know that he feels all squishy and happy inside when he's running his hands through rice! After about 30 seconds, I was able to say, See ya, bye!

Nate LOVED Kids Camp! He asked to go back the next day! (He was going to go back anyway, but I expected him to protest.) A firefighter came to visit (Nate was a little afraid until she took off some of her gear), a zoo keeper brought animals (snake, hedgehog, alligator, and others) for them to pet, they had story time and movie time, and brownies, and what more could a little boy ask for? When I picked him up the last day, he was watching a movie dressed in a chef hat and a Speedway vest. What? Why? I still don't know! I can't tell you how happy I was that he had a good time. They did a great job with Kids Camp.

Anyway, after I dropped Nate off Monday morning, I went over to the conference and immediately recognized some of my mommy friends from the babycenter spina bifida board!!!! I had already met Wendy, but this was my first time meeting Leigh, Emily, and Elizabeth. It's so funny when you feel like such good friends with people you've never met before! We all went to the opening session, which is where I first started hearing about this executive functioning business, as well as some other awesome information from very well respected speakers. In the afternoon was the Parent Chat. There were 35 people in the room, all of whom have a 5 year old or younger who has SB, and I personally knew half the people in there! It was so funny. In addition to my babycenter friends, there were 11 people in there from Kentucky. I was so proud when one of those moms was giving another advice about a program she uses, and she said twice, "I never would have known about this if it wasn't for our Playtime with Me at SBAK." Yes! That's the whole point! Made my heart happy that we're doing something that really makes a difference. Also, you could tell a huge difference in the parents who have a support system like our SB board or the playgroup, and those that don't have the support of other parents. I am so lucky!

That evening we had an impromptu playgroup! The hotel staff let us take over their breakfast restaurant that they weren't using in the evening, and we moved tables, set the babies up in the middle, and gathered a bunch of people from Kentucky, and my babycenter mommies! It was so much fun having all of us sitting face to face across a table.

This is our little buddy Ian, but Nate doesn't get to play with him enough to remember his name, so after he left for the pool, Nate cried and cried, "I want to play with that girl!!!!" (He still gets his pronouns mixed up sometimes!)

It was interesting staying in a hotel by myself with both kids, but I'm very thankful that my parents were staying in the same hotel to take care of Georgia during the day, and they were a huge help with Nate too.
 

Us girls getting ready on Tuesday morning.

 

Tuesday was packed full of sessions about everything from social skills to physical therapy to bracing to folic acid. I learned a ton and took pages of notes, and my brain was starting to get a little mushy by the end of the day from information overload. We needed to just get out of the hotel. So we went to dinner, and as often happens, Nate had a huge fit in the restaurant. As in, screaming. It was bad. Georgia was screaming too, but Nate is, after all, four now and should act a little better. So my mind was all over the place that night, just confused about why he's been so out of sorts, especially since Minds in Motion but also just regular Nate stuff. I've said before that Nate seems like this really complex puzzle, and I figure out little bits and pieces of him at a time, but I haven't totally figured him out yet and what makes him tick. The next day, I found what I think is a major piece of the puzzle.

Like sensory processing, this executive functioning stuff is hard to wrap my brain around. But I'll try to explain it. There are some differences in the brain in a child with SB. I really like to think that SB is only physical stuff, but when there's any kind of difference in your brain (for example, Nate has mild unshunted hydrocephalus and very mild chiari malformation), it can cause some differences. The differences are not so noticable to the untrained eye, so sometimes our kids could get blamed for being lazy, innattentive, etc., when they have very real reasons for how they are acting. The pre-frontal cortex of your brain controls your executive functions--"abilities that allow a person to successfully engage in independent, planned, strategic behavior to reach a goal." They are a set of cognitive skills required for individuals to carry out tasks. These skills are often lacking in people who have SB, and the skills include:

Inhibition: The ability to think about consequences before you act. (Picture a teenage boy here!)

Shift: Transition freely between tasks (e.g. Time to stop watching TV so we can have lunch.)

Emotional Control: Ability to manage emotions by thinking rationally ("I'm disappointed I can't play outside because it's raining, but it's okay cause mom said I can play outside tomorrow if it's nice out.")

Initiation: Ability to begin a task or problem solve independently. (An example of this might be: Nate sees some kids playing a simple game, and he stands on the sidelines watching them, smilings. If you ask him if he'd like to play the game, he says yes. But it takes you actually guiding him there before he will play. There's a difference between knowing what you want to do and actually doing it. Those who have poor initiation appear lazy, unmotivated.)

Working Memory: Hold information in mind long enough to complete a task (For example, 2-3 step directions such as "Pick up that toy and put it in your toy box, and close the lid.)

Planning/Organization: ability to manage demands, create a plan or step by step process to get from A to B (such as when you tell a child to "clean you room." It takes a lot of planning to figure out all the steps to get that done.)

Organization of Materials: Organize belongings, create and maintain systems to keep track of information and materials. (Could be like understanding where the cars always go and where the dolls always go.)

Self-Monitoring: being able to monitor your own performance and measure it agains standard of what is needed/expected, ask yourself, "how am I doing?" (Maybe like comparing how he is dancing to how his buddy is dancing and trying to do it the same.)

Then the speaker gave an example of a 4 year old boy named Micah who has a melt down over every little thing, especially when he's tired or hungry or in places where there are a lot of people and noises. Far moreso than his peers. He has trouble transitioning from one activity to another, even if the next activity is really fun. He thrives on routine. It went on and on, and sounded like she was not referring about a boy named Micah but instead about a little boy named Nate.

When Nate was a baby, we thought, hmm, maybe he's just a lazy baby. He doesn't seem to have that innate desire to move, even though he has the ability. He's happy just to sit in the floor and smile at us. He's never been one to say "I'll do it myself." This is all INITIATION. Nate has a terrible time transitioning between activities. His teachers and therapists bring this up all the time. He throws major fits, even when a cartoon ends and another comes on. This is SHIFT. The tantrums he has, especially in public places like restaurants. He melts over every little thing. If he drops a cookie, it's the end of the world. If he asks me to carry him and I can't right that second, it's the end of the world. He can't rationally see that it's going to be okay. Moreso than his peers. This is EMOTIONAL CONTROL. He had a terrible time learning how to crawl, climb stairs, etc, partly because he was a bad motor planner. He couldn't figure out the different steps it took to do these tasks. This is ORGANIZING/PLANNING.
Please don't get me wrong--I'm not making excuses for Nate or trying to slap a label on him to explain away his behaviors. This infomation gives me so much HOPE. It's really not that I'm doing a terrible job as a mother, or that Nate is just a brat. There is a real, anatomical reason for these challenges he's having, and now I have things I can do to help him. We have already learned over the years to do many of these things, such as remove him from an overstimulating situation if he's having a tantrum and talk him down off his ledge. But they certainly gave me lots of tips for more I can do. Like games to play, how to prepare him for situations, how to keep him in a good routine but mix it up now and then so he doesn't get stuck in a rut.
So all this information has really helped me understand Nate better, and it will also be helpful when talking with his teachers and therapists.

I went up to the speaker after the session was over, and I told her a little about Nate and that he had been diagnosed with Sensory Processing Disorder, and I wanted to know how that was related to the Executive Functions. She said sensory processing is under that larger umbrella of executive functions. She said that with all this sensory therapy, we're just treating a symptom and not the real cause of the issues! BREAKTHROUGH!!! I asked her what type of specialist I need, because we have a specialist for everything! :) She suggested we contact a Speech Pathologist for Cognitive Rehabilitation. There wasn't any more time to ask questions, and I have no idea what this is, but I'm going to find out! I know, I know, another therapy, but I really feel like we're finally starting to put all the pieces of this puzzle together and might actually start to get some real answers.

So I came back from conference physically exhausted, but mentally invigorated. I'm so glad I had the opportunity to go, and I'm going to put a lot of what I learned into practice, both at work and at home.

Nate's birthday weekend

How many kids are lucky enough to get a whole birthday weekend? Well, we needed to be in Cincinnati on Sunday evening for the Spina Bifida Association national conference anyway, so we decided to go up on Saturday and have some fun.

So I have to tell this story about Georgia, and I'll probably continue to tell it throughout her life to anyone who will listen. Okay, Blake and I drove seperately up to Cincinnati, because he was coming home on Sunday and we were staying. He drove the truck with both kids in it (I think it's safer, but I don't like to drive it because it's kinda redneck :) and I followed him by myself in the car. We got up to around Florence (for those that know Kentucky), where you're starting to get into like 5 lanes each way. I called Blake to see if the kids were behaving, and everything was fine. A couple minutes later, I saw him reaching back to mess with one of the kids, then he started slowing way down, and he pulled over on the side of I-71. I, of course, followed him, wondering what was going on. He got out of the truck and started walking back toward me with his hand held up in the air like he had something on it. I rolled down my window and said, "What's on your hand?" He said, "POOP!" Georgia had started fussing, so he reached back to replace her paci, and he came back with a hand full of poop! (I'm really sorry if this grosses you out, but most of my readers are moms and usually enjoy a good poop story.) I gave him some wipes for his hands, and he told me I was going to have to clean her up because he was totally grossed out.

So I pulled her car seat carrier out of the truck and saw she had had a massive blowout. She had it head to toe. It was incredible. Blake said, "How can so much poop come out of someone so small?!" I asked him to get in our luggage and get out a beach towel and the box of wipes. I laid the beach towel in the grass beside the road (the truck was between us and the highway) and put her on it. I stripped her down and used about a half box of wipes trying to clean her up. Meanwhile, Blake was using a bunch more wipes trying to scoop poop out of her car seat. It was still pretty nasty, so we had to put another towel in the car seat and put her in there in just a diaper. And we went on our way! That's one of our top 2 poop stories of all time.

Our first stop was EnterTrainment Junction, which has the largest model train display in the world. We were pretty sure Nate would like it. Oh, he LOVED it. He was totally enthralled, running around saying "Whoo whoo!!!!!" I haven't seen him that happy in a long time. It's funny how after you have kids, your idea of a great time is watching your kids have a great time.

Georgia is all cleaned up, and I put a clean dress on her when we got there, but I couldn't salvage her shoes.

A very happy guy.

All 3 kids having fun with trains.

Such a big girl now.

After getting back to the hotel, one little girl needed a bath, and one car seat needed a good washing. We went out to dinner, and then went swimming!!!!

Ever wonder where Nate gets that cheesy grin?

If you look close, you'll see Oreos on the mouth and blood on the head. (He fell when getting off the bed.) I need to start preparing my Mother of the Year Award speech.

This is a cute picture when it's not rotated the wrong way.

Look how BIG he looks! He IS 4 now, after all.

Sunday morning we went to Newport Aquarium. FYI, they have a "no stroller" policy on Saturdays in summer. We were not expecting that, but no problem, we figured Nate would walk and Georgia would stay in my Mei Tai baby carrier. Instead, Nate wanted Blake to carry him through the entire aquarium, and Georgia wanted to walk all the way through, with me bent over holding her hands.

Nate is still talking about his birthday weekend. Twice in the last couple days, he's randomly told Blake, "Thank you for my birthday." Very sweet.

Excerpts from my pregnancy journal

Today is Nate's 4th birthday. FOURTH, people! How do I have a four year old?

Every year around Nate's birthday, I go back to my pregnancy journal that I started a few days after the fetal surgery. My mother in law, Janie, encouraged me to start a journal, and at first I thought I would never want to remember some of the painful details of this time in my life. Now, I am SO glad I kept this journal. It was therapeutic for me at the time, and I just love reading it every year and remember the most defining period of my life and seeing how far we've all come. I thought I would share some excerpts from that journal.

First entry--Monday, April 24, 2006 (5 days after surgery)
".... They put me in a gown, started the IV, and put in the epidural. When they rolled me in the operating room, I was feeling sleepy and I had to hold up my IV bag. My mom said I looked like the statue of liberty. ... The anesthesiologist put the mask over my face and told me to breathe deep. I took about 3 breathes, and the next thing I remember they were waking me up back in my room and everyone was there. Blake was talking to me and I heard my mom say she was so proud of how brave I was."

Friday, April 28, after an ultrasound
".... I was afraid my fluid wouldn't be increased enough and they would put me back in the hospital. Well, everything was fine. The amniotic fluid had doubled, his ventricles were no more swollen than before, and we watched him flex all his joints. Hannah, the tech, wanted to see Nate flex his ankles, but he was just hanging out with his ankles crossed. She poked and poked at him, and he finally got mad and kicked her back!"

Tuesday, May 9
"... I finally met with Dr. Tulipan (neurosurgeon) yesterday.... When he did come in, a half hour late, he didn't shake my hand, introduce himself to my dad or anything--just said, "Hello, so why are you here?" I told him we understood that he had found during surgery that Nate has myeloschesis instead of myelomeningocele, and we wanted o know more about that. He said it doesn't make any difference. I asked several questions about it, and all he said was that the results would be the same, this was just a variation of the myelomeningocele. He said, "I honestly don't know why you're focusing so much on this." Uh, because I like to be informed about the health of my child, you big pompous jerk. My dad told him we were just curious because we had never heard the term before and just wanted to know what it meant. Then I thanked him for his time (not sure he picked up on the sarcasm). It was a short visit. It's pretty much exactly what I expected, but it upset Blake--he had gotten his hopes up that this would be better than we had previously thought."

Sunday, May 14
"Today is my first Mother's Day. ... Yesterday I was hoping we could go to the store for some drinks, but Blake got them while he was out. Then I wanted to go out to eat, but we ordered in. Then on the way to a movie, we stopped at the bookstore, but there were no parking spaces so Blake said he would just run in real quick and I could stay in the car. And I threw a tantrum. I started crying and said I wanted to go in the bookstore too and I was tired of sitting in the apartment and waiting in the car. (I was on modified bed rest.) Blake said he didn't realize how much the bookstore meant to me. He said these pregnant hormonal outbursts throw him for a loop and it tugs at his heart to hear me cry. So we went in the bookstore and to the movie. It was a nice night--warm, I was wearing my purple floral skirt. It was a nice date."

Monday, May 15
"Mary called this morning ... and said my glucose test was a little above normal, so I have to take the second test on Thursday. ... Please, God, let it be negative. I don't want to be on a diet! No sugar?! Haven't I suffered enough? :) I feel like I'm a guinea pig in some tortuous experiment!"

Sat., May 20
.... Even though I love being pregnant--the belly, feeling Nate move--I think I'll be glad when it's over and he's here. I hope it's another 2 months or more from now for all our sakes, but this pregnancy stuff is hard. My stomach hurts most of the time, I dread going to bed because I can't sleep and my hips hurt so bad. It's a little scary though, because it's not like everything is going to go back to "normal." Everything will be different, and we really don't know what to expect."

Sat., May 27
I'm in the hospital for the long haul now. Thursday evening, my water broke. We weren't sure that's what it was, but my dad took me to L&D and Dr. Collins confirmed it the next morning. When I first heard, I thought Nate was going to come right then, and I was really scared. I'm only 28 weeks. ... Daddy waited to call my mom early the next morning, and I waited until Dr. Collins confirmed it before I called Blake at work. I said, "I have some bad news--my water broke." He was in a meeting. He said, "I'll be there in 3 hours!" He freaked out until I finally remembered to say that Nate wasn't coming right then, could be days or weeks... Mary came to see me yesterday morning, when I was most scared. I asked her what I had done wrong--I've been trying so hard to do everything right! She told me to put that out of my mind because I had done everything I should. ... I just don't know why my water broke so much earlier than everyone else in the study. ... After reading my Bible last night, I realized how completely out of my control this is--God is going to take care of us whether Nate is born tomorrow or weeks from now."

Tues, May 30
My mom took me for a wheelchair ride today, and we can't figure out why they put so much brick sidewalk all around the hospital. I jiggled so much that Nate was on the other side of my belly when we got back."

Wed, May 31
"...I spend my time drinking water (to make amniotic fluid) and going to the bathroom like it's a full time job."

Sat., June 3
"After all this is over and Blake and I are finally at home together with Nate, I am going to try to always be simply grateful for my family. I know there will be stressful days, but I just want to enjoy our family and make Nate's childhood as happy as it can be. ... And as of now, even after all I've been through with this pregnancy, I'm thinking we need to have another child in a couple years...."

Sun., June 4
"I had a bad morning. I woke up around 4:30 (a nurse popped in, even though they're supposed to leave me alone to sleep at night) and my stomach was cramping a little. The nurse put me on the monitor and I was having regular contractions. They were small, but I could feel the tightening when I saw one on the monitor. It was time to take my medicine, which stopped the contractions in a few minutes. She brought the Dr. in, who wanted to make sure my cervix was still closed. I was so scared and uncomfortable that I cried until she stopped. They sent me to L&D to be monitored and for IV fluids. I was so afraid this was all over. Blake had spent the night at the apartment so he could rest better than in the hospital chair, so he wasn't with me. ... I was trying to sound calm and told him I had had some contractions they had sent me to L&D for monitoring. I told him he needed to come over now. He said, "Were they little contractions? Do I have to come now?" ! I said, "I'm in Labor and Delivery, and I'm scared!" He was there in no time. I didn't like being there at all. It was cold, the bed was hard, and most of all, that's where the babies are born. ... All of this is so exhausting--mainly mentally and emotionally. I wonder if I will have aged 10 years by the time I get home. I'm worried that the rest of our lives will be this worrisome, with Nate's medical problems. It's all overwhelming, but I know God will take care of us."

Tue, June 6
I made it to 30 weeks! ... I'm still feeling pretty good, but I know things are unstable enough that something could happen tonight. But now that I've made it 10 days, I think I can go 2 more weeks."

Sun, June 11
"So a strange thing happened this weekend. Yesterday morning, the nurse came in and said Dr. Kang changed my procardia (very important anti-contraction med) from every 4 hours to every 6 hours because it lowers my blood pressure so much. Well, we just changed it to every 4 hours last weekend after the contractions episode, and it's working. And, I've had low blood pressure the whole time I've been in the hospital and no one has minded. Later, the nurse came back and was going to give me IV fluids--which I totally don't need because I drink gallons of water a day. And no one had come in to talk to me about any of this. So the nurse said she would go get a Dr. and Dr. Knapp came in. She acted all annoyed that I was questioning this--and like I was thinking only of myself instead of the baby! Hello! That's why I don't want to reduce the procardia--so I won't have contractions and go into labor so that the baby can stay with me as long as possible. So I convinced her fluids were unnecessary and to only reduce my meds to every 5 hours. I also decided to sit straight up every time they take my blood pressure, even in the middle of the night, because it just looks low when I'm laying down. Then this morning, the nurse came in and said Dr. Knapp put my procardia on hold. I said what do you mean 'on hold'?! She said I couldn't take it until Dr. Knapp thought my bp was high enough. She also said Dr. Knapp told her she had talked to me about this decision. I didn't even see her today! In fact, I talked to Dr. Collins (my main doc) this morning, and he said he didn't care what my bp was as long as I was feeling okay. So I told the nurse to please go tell Dr. Knapp that taking procardia is MOMS study protocol and that Dr. Collins (her attending, whom she did not even consult with) is not concerned about my bp. The nurse came back and said Dr. Knapp said it was okay to take it then. Darn straight--I have my own meds here, and I can take it even if she says not to. I feel like I have to fight these people so they don't completely screw things up.
Oh, and we filled out Nate's birth certificate today! Exciting!"

Random entry titled "Things I hate about being in the hospital"
1. Always having tape on my arm hair (IV)
2. Pillowcases that come off the plastic pillows
3. Peeing in a hat
4. Having the same menu every week
5. Riding in the wheelchair on brick sidewalks
6. Being woken up 20 times after 6 am
7. Dragging the IV pole to the bathroom at night
8. The blow-up leg thingies
9. The big scary charge nurse
10. The Dr. who persistently tries to take my medicine away
11. Wearing the same 4 maternity shirts over and over
12. This bed--the bottom has to raise when the top raises
13. The remote control that always falls in the floor, only changes channels up, is too quiet for two people to hear the TV at the same time, and accidentally calls the nurse all the time.

Thur, June 15
"...My c-section is officially set for 9:30 am on July 4. Yankee doodle baby!"

Sat, June 17
"I had a rough morning ... The walls were closing in on me. I've been here for 3 1/2 weeks straight. In this room. I suddenly got very claustrophobic and upset (mostly because of the lack of sleep) because I CAN'T LEAVE! Everyone else can leave, and they just don't know what it's like. And I don't even have a choice in it--if I left, Nate and/or I could literally die... I'm so tired right now, and I'm just waiting until I can finally go to sleep without waking up in the middle of the night." (HA! It hasn't happened yet! )

Tue, June 20
"32 weeks! 32 weeks! 32 weeks! ... It's hard to believe that in 2 weeks, Nate will be here. I'll be a mom, our parents will be grandparents, and Blake and I will have our own family. Weird. I'm excited."

Sat., June 24 (day before birth)
My appointment yesterday went really well. Nate's ventricles hadn't changed, and I asked Dr. Collins if that meant Nate would not need a shunt. Although he couldn't tell me straight out, he made it clear that that was the expectation. ... We saw Nate move his legs, and i asked Dr. Collins if that meant Nate would move his legs when he's born and he said (in so many words) that that was what they expected. Oh, and he weighs more than 4 pounds now! We're really hoping for a 5 pound baby. ... I haven't felt great today. My stomach has been kind of sore, especially when the baby moves. I'm going to be so ready to have this baby by July 4th. But I really want to keep him as long as possible so he can spend less time in the NICU. For now I'll keep incubating. It's not a pleasant job ... well, sometimes it is."

Sun, June 25
"Today was Nate's birthday! I had contractions last night and was sent to L&D. When they didn't stop, they checked me to find I was 3 cm dilated and 75% effaced. It went so quickly that we barely had time to call our parents. I was prepped, which seemed to take forever, and Blake was there for the surgery. Dr. Collins did the surgery and Mary was there. The best sound in the world was when we heard Nate cry. They brought him over to me and he calmed down. They let Blake hold him and he cried. Blake took each set of grandparents over to the NICU, and tonight I went over. I got to hold him, and he's so cute! He looked so comfy, but I had to give him back after 10 minutes because I was so tired my eyes kept crossing. Which is how I feel now. Must get sleep." (You should see my handwriting on this page--all over, cause I was falling asleep while writing. )

Monday, June 26
Nate seems agitated by all those tubes and things all over him. I know how he feels, but he doesn't understand why he feels so bad. It's frustrating that I can't take care of him. I changed a couple diapers and got his temp, but it's clear that they are the caregivers and I'm just there asking for permission to do things for him.

Tue, June 27
I got to hold Nate this morning and feed him a bottle, then this afternoon, I got to try to breastfeed him! It was great. He even opened one little eye to see me for the first time. I'm in love. ... Tonight I was having trouble pumping, and I started freezing. I was running a fever, and the nurse said she would call the doc. Well, I'm already hormonal, so I started freaking out that I wouldn't be able to go home tomorrow--and despite what Blake and my mom said, it DID seem like the end of the world. I cried for about an hour, and then the big scary charge nurse came in and helped me with ice and pumping. I still should be able to leave tomorrow."

Wed, June 28
"... Nate is doing great. The doctors and nurses say his repair on his back is the prettiest they've seen. I almost regret calling Dr. Tulipan a jerk. He's a talented jerk."

Thur, June 29
"Ever since they've been feeding Nate my milk, I haven't heard him cry once. He's a good baby. He would like to eat more than they give him. ... He was also determined to keep kicking off a blanket we put on him. It would take him half an hour, but he would kick his legs and push with his arms until he finally got it off." (Obviously a huge thing for us)

Fri, June 30
"... I must have the baby blues because every little thing mad me cry today ... They didn't move Nate to a crib today, and he still has oxygen, and they're worried he poops too much and something is wrong, and the ortho said his knees don't extend all the way and he might need braces, and he has to have another MRI tonight because they did the last one wrong. It just wasn't the best day. But he's so cute and I can't wait until he's all mine. It feels like he belongs to the hospital now. Okay, time to pump again."

Mon, July 3
"This morning we were so hopeful--when I came in, Nate didn't have his O2 on, and he was doing great! When the doctor came in, he suggested Nate go home today! The nurse and I both said "TODAY?!" So he said maybe Wed or Thur since tomorrow is a holiday. Everything was great until I fed him and we had to turn the O2 back up. And then his temp was low all day, and they had to put the lid back down on his isolette and turn the heat back on. In my fragile emotional state, that was enough to send me over the edge. I can't believe we took two steps back when we're so close to him being ready to leave I don't want to rush this, and I certainly don't want to take him home before he's ready. I just want him to be well NOW. And I want to take him home when we don't have to have ll these wires hanging off of him and nurses to deal with. ... He has a really bad diaper rash, and Dr. Walsh doesn't think he can feel it because of his SB--which is hard to hear.... I am emotionally drained from the last 3 months. They seem like a lifetime."

Sun, July 9 (talk of keeping us until the next week because of apnea spells. My mom and I were getting really homesick.)
"I'm trying to figure out God's plan for this whole situation--which I realize is silly and futile. One day I'll understand maybe. Is He trying to prepare me for a life of long hospital stays? Is He teaching me patience and compassion? It's so hard and it hurts so much--will there be a reward? Or at least some rest after this? I know this is part of his plan for me, but it's hard not knowing why."

Mon, July 10--we decided to move him to UofKentucky NICU
"Nate is becoming more alert everyday. Sometimes his eyes are wide open, taking in all his surroundings. Sometimes he can't control them and they roll aimlessly. He's a great eater and always seems hungry. No matter what time of day, he's smacking his lips and sticking out his tongue. He's stable enough now that we can just hold him for longer periods without worrying as much about his oxygen or heart rate, although we can't seem to stop glancing at the monitor every few seconds. He HATES to be burped. He grunts the entire time to let us know how unhappy he is. He also hates having his clothes changed, but that usually happens about 3 times a day because of accidents during diaper changes. Can't wait until I can hold him all I want and see him all day long."

Thur, July 13
I'm finally back in Kentucky. My mom and I got to UK about an hour after Nate got here in the ambulance. He had missed a meal and he at A LOT the next two meals. Whereas he usually eats 60cc's, he ate 70 when he got here and 82 when I fed him! He would have eaten the full 3 ounces but we were afraid he'd get a belly ache. He was hanging onto the bottle like I would take it away from him. ... After staying awhile at the hospital, I went home for the first time in months! It looks so pretty to me now! And I saw the nursery for the first time. I can't wait to get him in his crib."

Fri, July 14
When I got to UK this morning, the nurse told me Nate had moved down the the nursery to make room in the NICU for the sicker babies. I found him downstairs in the nursery. I told the nurse I was really uncomfortable with trying him out on room air without a monitor to say how he was doing (duh), so she gave me a "bag" to blow oxygen in his face while I fed him!"

That entry stopped there because I had to go take care of Nate that second. I picked up the rest of the story on Sunday, July 16.
"So the rest of the story for Friday is that Nate was moved to another room and put on a monitor, and he did really well without o2 most of the time, but he was having low desats to the 70s and even 60s! I've never seen them that low. I kept asking the nurse if he needed to be back on the oxygen, but she insisted he was fine if he bought them up quickly. It was chaos down there in the nursery. This nurse had two discharges, including a couple that didn't speak English. It took 3 hours for the interpreter to show up and in the meantime this nurse just screamed at them in English--because we all know that people can understand a different language better when you say it louder. She was paying no attention to Nate, on a day when he needed someone to constantly evaluate whether he needed the oxygen. Normally he lasts only an hour before they put it back on him, but he had gone all day--probably because no one was there to say he needed it back. I was ALARMED, and I felt so helpless there by his crib because the nurse would not listen to me. At Vanderbilt, he would have been back on oxygen by then. So I asked to talk to the doctor--which I'm sure made her mad. Dr. Reynolds came by and I told him about the desats. He couldn't look at Nate's previous levels on this ancient machine, and Nate was in the 90s when he walked in, so he basically told me (in front of the nurse) that it was my job to make milk and worry, and it was the nurse's job to watch the monitor. But she wasn't watching it! So Blake came later to feed him, and while Nate was eating he had desats so low his lips were turning blue. Instead of putting the cannula back in his nose so he could eat, the nurse BAGGED HIM 3 TIMES. We had to leave because of the shift change (the nurse had to tell the night nurse how much trouble I had caused), and I was scared to leave him there to go home. Were they going to leave him off the oxygen all night? Could this cause long term damage? Was anyone going to pay attention to him in all of that chaos? When I got home I called the Vanderilt NICU to see if I was overreacting. The nurse said that if I didn't feel like they were taking my concerns seriously, I needed to let them know or get a second opinion. Because it was Friday night, I couldn't exactly call our pediatrician whom we've never met. I decided that maybe the problem was just the day nurse and that I should call the night nurse and tell her how concerned I was. She was rude from hello. I told her I knew she was busy. "Yes, I have four babies to feed right now." Well, that's what I wanted to talk to you about. I'm concerned that Nate needs oxygen while he eats and he didn't get it earlier-- "Ma'am, would it help you to know that I have over 20 years experience as a nurse?" I'm sure you're a great nurse, but I know that if Nate is pushed too hard, he'll backtrack... She interrupted everything I said and WOULD NOT listen to me. (Well, she knew I was a troublemaker from the last nurse--my reputation preceded me.) After she had put me in my place, or tried to, I dropped the politeness and said, "That's it. I'm moving him to a different hospital." I called a charge nurse and told her everything that happened, and s had Dr. Reynolds call me. He took up for his nurses again but I got through to him my discomfort with having Nate in such a crazy state. So he moved him back up to the NICU. Ever since, he has had great nurses. In fact, his nurse that night put him back on oxygen after desats to the 80s and 70s! Ha--told her I knew what I was talking about. Then yesterday Dr. Reynolds told the nurses not to try him without oxygen to give him a break (as I suggested). So, I threw my first mama fit. I didn't want to be rude, but I did what I had to do for Nate."

Monday, July 17
"...He's coming home tomorrow, probably with oxygen. I wouldn't mind it so much if they didn't require it for a month. A whole month of oxygen tanks, battery packs, cannulas, and false alarms. But I'll have my baby. And I won't have to visit a hospital again for another month. The hospital is its own little world. People trudge around like zombies, with vacant stares. In the NICU, moms (and sometimes dads) try to piece together some kind of normal life--singing quietly to their babies, touching them through the holes in the isolettes, and breastfeeding or doing "kangaroo care" behind curtained screens. They stay as long as they can, usually just sitting beside the bed while their babies sleep. When they finally have to leave feeling guilty, the nurses always ask "Are you coming back?" I'm sure they're asking for practical reasons, but it always feels judgmental to the moms. Some of the parents get to know each other. Then when one of their babies gets to go home, it's even sadder for the parents left behind. Leaving tomorrow will be bittersweet. We'll be ecstatic and relieved to bring Nate home after 3.5 weeks, but disappointed that his health concerns aren't completely over. Sometimes it's hard to remember to count my blessings, but I know I have more than I can count."

Tue, July 18
"Nate is home! Finally! He's 3.5 weeks old, and in a way he feels older, but then again his due date isn't for almost another month.... This morning we got training in baby CPR and with an apnea monitor and oxygen tank. I had to force myself to pay attention because my mind kept saying "This is scary! I don't want to do this!" The monitor is especially scary--and annoying and loud! ... When we got home, Maggie was pretty interested in sniffing Nate, but she was good. I fed Nate while Blake made a Dr. appointment and did other chores. After he ate, I was able to just lay on the couch and cuddle with Nate--something I've been waiting to do since before I got pregnant. It was wonderful."

June 25, 2010
Fast forward 4 years to today. Minds in Motion had a parent day where we could come see what the kids have been doing all month, and this same baby I had worried so much about ... did a dang HAND STAND. He needed a little help holding his feet on the wall, but it was one heck of a hand stand. And his mama cried.

Happy 4th birthday to my miracle "baby" who is no longer a baby.

The new swingset

Nate and Georgia got an early birthday present from the whole family--a swingset! The directions said it would take 2 men 8-10 hours to put the thing together. Well, it took our 3 men about that long, but who's counting?

Janie and I got the kids outside to keep the men company.

 There sure are a lot of pieces ...

 For now, we'll play on the baby swing set.

 Nate pushed the gas pedal while Koko steered. 

Georgia tagged along.

Making some progress...

The kids started a band.

Back outside...

It's starting to take shape!

Bob took a break from building to play bubbles with Nate.

He's outgrown the baby swingset.

Georgia climbed this slide with her monkey toes.

Everything Georgia can do, Nate has to try too ...

Hey hey, we have a clubhouse now!

Would you like fries with that?

I'm going to have to speak with my manager ...

A slide of his very own!

The only thing left is the swings.

Yay! Nate was in his pajamas and ready for bed, but he got to swing on his new swing set!

A couple weeks later, I got Georgia a swing.

Nate often swings while doing his listening therapy.

And Georgia giggles the whole time she's swinging.

Thanks, grandparents, for the swing set! We love it!

Good day

We've been dealing with some major behavior issues lately, so I can really appreciate a good day here and there. This evening when I got home from work, the kids were both happy happy. Nate had a dum dum and had been sharing with Georgia--gross, but seeing as he usually wants nothing to do with her, there's no way we were going to stop him. I held Georgia's hands as she chased her big brother around the kitchen, with everyone laughing hysterically. Nate even played with Georgia later and made her laugh.

I made a yummy dinner that Nate ate all by himself, including the mashed potatoes. He helped me make brownies, which is a first--normally when he "helps" that just means helping to eat them! He was standing on a stool helping me pour in the ingredients and stir, and Georgia was sitting on a booster seat on a chair next to us. As soon as we had poured the brownie batter into the pan, I was putting the bowl in the sink when Georgia reached over and knocked the pan in the floor! Miraculously it landed right side up ... shattering Maggie's food bowl into a thousand pieces. But the brownies were fine! Phew! Nate and I would have been all kinds of upset!

After Georgia fell asleep, Nate and I drummed with socks--Hey, if you can't beat em, join em. Then we snuggled and talked about the day he was born and his upcoming birthday. He climbed in my chair with me and gave me kisses and said, "I will love you everyday." Awwwww. I took him upstairs to bed, and that woke Georgia up, but she just snuggled with me--something she NEVER does--while Nate and I sang songs. Ahhh, such a lovely evening.

Then ... things started going downhill fast. Nate was all ready for bed, and I went to turn on his "new music class CD." (Backstory: Every session of music class, we get a new CD with different songs to learn. Since we got our latest one last week, he only wants to hear the "new" one. He had been going to bed great for quite awhile listening to his music class CD, then one day his CD player broke, and then every night was awful. But a couple nights ago, I got him a new CD player and set it up with the new music class CD, and all was right with the world again. Okay, back to the story.) I pushed play ... and nothing happened. Hmm. Is there something wrong with the CD player? It's plugged in ... I opened it up ... oh nooooooo! The CD was gone! So I told Nate that daddy must have taken the CD out this morning and I would go find it, but first I needed to put sleepy Georgia to bed. He promised to not scream or cry. I put Georgia to bed and came downstairs and frantically called Blake.

Me: Where's the new music class CD?!!!!
Blake: ... Oh. I'm really sorry. I have it in the truck.
Me: You have totally sabotaged bedtime!
Blake: I'll be home in 20 minutes.

You don't mess with bedtime and the new music class CD! So, sure enough, over the next 20 minutes, Nate woke Georgia up 4 times with his screaming about various things like losing the socks from his hands (finally had to pry them out of his hands), wanting his red blanket instead of the blue one, then wanting the blue blanket instead of the red one, and on and on.

Now Blake is home eating my yummy dinner, Georgia is wide awake begging for bites off his plate, Nate is happily listening to his new music class CD in bed, and Blake just asked me what happened to Maggie's food bowl....

Let me explain (Nate)

Okay, so I realize I didn't do a great job of explaining background in the post about Nate's issues resulting from Minds in Motion. (Some strange things going on with Nate) Frankly, I sometimes get tired of hearing myself talk (even in my head) and just cut to the chase.

1. Nate has Sensory Processing Disorder. This is seperate from Spina Bifida. Everyone has sensory stuff that bothers them. You may not be able to stand riding roller coasters, or hearing nails on a chalk board. I can't stand even the thought of a wooden popsicle stick touching my mouth. That's sensory stuff. Your brain receives sensory information but doesn't know how to process it. Some people, like Nate, have a lot of this sensory stuff going on to the point that it disrupts their lives. For Nate, two of the most significant effects are that he has trouble regulating his mood (even for a little guy) and he feels off balance all the time. No one really knows why some people have sensory issues--anybody can have them, but they often go along with other special needs, especially autism. But having sensory issues does not mean one has autism. Some theories for what causes this are a traumatic gestation or birth, living in an isolette in the NICU at birth instead of being held, not being very mobile as an infant ... could be any or none of those things. We just know that this sensory stuff kept Nate from walking for a long time and still limits his mobility somewhat. And the mood swings ... yeah.

2. We've done therapy for his sensory issues before. We've done "brushing" (using a special brush on his arms, hands, legs, feet, and back, as much as every 2 hours all day), swinging in a lycra swing (or other type of swing), listening therapy, spinning in a chair, and more. It's all designed to give Nate's brain the sensory input it needs to help it learn how to process it. And it's all helped. For example, when he was about 27 months old, he refused to walk in his walker because he was afraid of being off the ground. After only one week of swinging in the lycra swing, he took off in the walker. Brushing him INSTANTLY calms him like magic. Last year, after doing Listening Therapy for the first time ever at Green Hill, he took his first steps. It's that powerful.

3. A few months ago, I read about Minds in Motion and was so excited because it sounded like exactly what he needed. It's intensive sensory therapy, especially focused on the stuff Nate needs most. We all went to an information session at Minds in Motion back in March, and Blake and I knew within a few minutes that we needed to figure out how to get him into this program. They told us the science behind it and the experiences they've had, and these kids sounded just like Nate. The problem was that it was $1200. We prayed about it, that if this was not right for Nate that we would not be able to come up with the money for it. And almost miraculously, we easily received a grant from another agency for the full cost, just by calling and asking. We also knew it would be a big commitment from all of us, so we waited until Nate was out of school and stable on his new seizure medicine.

4. Minds in Motion involves playing with their staff in the gym and doing Vision therapy and Listening therapy. The founder of this program oversees it on a daily basis. We expected some strange behaviors as a result of the Listening therapy especially. Remember, we've done this before, last year. (See pictures here) And I think the last time it resulted in him starting to put everything in his mouth. So it's not totally surprising he is now having weird side effects from the Listening therapy, but we weren't expecting them to be so severe. Poor guy has had a lot going on lately, with all the mess of going on seizure meds, coming off them, going on another one, etc, plus me going back to work and getting a new sitter and his sister getting so mobile. So it's a rough time for a little guy. This sensory stuff that's coming out (emotional instability, physical unsteadiness, fist clinching, jaw clenching) is stuff that he's had already ... it's just really magnified now. They say if you see weird things happening, that means it's working. I think they are surprised at just how much Nate has been affected. But we can't just stop right in the middle of it. That means it doesn't get resolved.

5. I struggle all the time with how to handle Nate's issues and what sort of help he needs to give him the best chance at life. There have been times that I overloaded his schedule with too many therapies. It's hard to know when to stop when your child has several issues and you have all these resources at your fingertips that could potentially help him. And then there have been times when I haven't pushed him enough. I knew Minds in Motion would be difficult for all of us, because it's a lot of work. He goes for an hour five days per week, then we do listening therapy another time of day. On weekends we do it twice. We also do vision therapy. It's a half hour away, right at the time when Blake and Alisa "trade" the kids. But I earnestly prayed about this and feel like God provided a way for this. Of course I am closely monitoring all of these quirks and behaviors and keeping the Minds in Motion staff informed. And of course I would never do anything that I really thought would hurt Nate in any way. But the tough part of parenting ANY child is that sometimes you have to subject them to things that aren't pleasant because that's what's best for them. I've pushed Nate in therapy when all he's wanted to do is rest. I've made him walk when he wanted to be carried. And now I'm having him do this therapy (that he likes, by the way) that makes him cranky and want to clench socks in his hands all the time because I think at the end of the month he'll be better off for it. It's painful to watch him be miserable. But he is unhappy on a daily basis because of these sensory issues, and that's why we're trying to resolve it at an early age.

Today when I dropped Nate off at Minds in Motion (I had the morning off), I talked to the staff, and they said he gets a new CD today--he's been listening to the same one for the last two weeks. I was hoping the change of CD would help, but Alisa said it was even worse today. Her words were "It's like the Keppra days." But Nate has actually been pretty good for me, so I hope it was a fluke. Only two more weeks, and it's over, and hopefully we'll think it was worth it by then.

My funny kids

A few recent stories about my kids:

Last Saturday, I was on a mission to get things done. I cleaned house, cleaned kids, went to walmart, went to a friend's house, took Nate shoe shopping ... by 9 pm, I had finished my to do list, but the kids were exhausted and very cranky. We were in the truck headed home, and they were both fussing at me. Georgia was hungry and crying. Nate was whining that he wanted to stop for ice cream. They got quiet for a minute, and all of a sudden they both started laughing--together. Now, this is uncommon, that Nate is having anything to do with Georgia. I said, "Aw, Nate, are you making your sister laugh?" More giggling. I couldn't see what they were doing, so after a few minutes, I pulled back the shade on Georgia's infant carrier to see that Nate had his finger in Georgia's mouth! And they both thought that was hilarious. Even though I liked the temporary peace, I really didn't know where that finger had been and made him get it away from her. :)

Georgia is talking a little more. A couple months ago she had said dada a couple times, but she hasn't said it since. With a lot of prompting from Blake, she's finally started saying it again this week. She's very proud of herself, and I think it melts Blake's heart. She has also started saying Georgia! It sounds like Juh juh. She hears people say "Hey Georgia" all the time and has picked it up. She's notorious for pulling up at Nate's little desk while he's having a snack and grabbing food off his plate, to which he responds, "Get Georgia AWAY!!!!" Well, a couple days ago, she saw Nate eating at his desk, speed crawled over, popped up and smacked her hand on his desk and said, "Hey Juh juh!"

In the last post I talked about Nate's "drumming socks." He has been really into drumming lately and "rocking" in general. Friday night was a rare night when Blake and I were both home, and we were playing with the kids. Nate said, "Come rock with me!" We pulled up some music on youtube--everything from Twisted Sister to MCHammer, and we all drummed and danced and sang and laughed. Nate said, "We just wanna rock!" :) That night when I was getting him ready for bed, I asked, "Did you have a fun day?" Nate said, "The rockin was so fun. I rock so hard." Hahahaha!

One day I left my laptop open on the coffee table while I went in another room. I figured Georgia would come over to the computer to investigate and push a few buttons. Sure enough, I heard Nate say to her, "No, don't get her computer!" Then yelled to me, "She's trying to email! Get Georgia away!" Tattling already!

Georgia only wants to eat table foods now. She's so over baby food. And this girl can eat anything. A couple weeks ago at Nate's music program, I was making a little plate of snacks for Nate, and I had Georgia on my hip. (It's amazing what you can do with a baby on your hip with a little practice.) I was talking to Nate when one of the teachers said, "How many teeth does Georgia have?" I smiled and said two. She said, "I don't know how she's eating that then!" I looked over to see she had a cheese puff in her mouth! She swiped it off Nate's plate without me even seeing her do it, and she was right there on my hip! Sneaky. But she ate it! A couple days later, I had cut up some chicken fingers for Nate to eat for lunch, but he had left a bite on his plate, and Georgia of course pulled up there and swiped it. I saw her put this bite of chicken in her mouth and just watched her, thinking there was no way she could eat it and I'd have to fish it out. Nope, she ate it! I have no idea how. She will eat anything. Yesterday at the golf scramble, she was in my lap while I was eating, and she grabbed a piece of spinach with raspberry viniagrette dressing on it and starting gnawing away!

Saturday, we went to Kentucky Horse Park with the SBAK playgroup. It was hot hot hot, but a fun day. When we got home, Nate's nose was running and he was all kinds of upset about it. I told him being outside must have upset his allergies and gave him some benedryl. Later, I asked him what his favorite part of the day was. He said, "We got to see the horses. But it made me snot."

Some strange things going on with Nate ...

This month we're doing Minds in Motion, which is sort of like therapy but not exactly, to help with Nate's sensory issues. They do vision therapy (helping his eyes work together better) and listening therapy (they do it once a day there, and we do it another time at home, and on weekends we do it twice) and they also do lots of other playing and exercises there. This sensory stuff is REALLY messing with Nate. I'm hoping this is just the "it has to get worse before it gets better" kind of thing and we're in the dark before the dawn, but I'm starting to get pretty nervous.

The worst thing is that he is VERY emotionally unstable and screams/shrieks like he's ON FIRE half the day. Over every little thing. He wakes up at night, and it looks a lot like night terrors, except I think he is actually awake, but he can't stop crying. He also cries for a long time when he goes to bed. We try everything to help him calm down, and you can tell he really doesn't even know what's wrong himself. He's inconsolable.

But there are a few even stranger things. He is clenching his fists all the time. He also wants to have socks in his hands all day. (I know, it's really weird.) It started a couple months ago when we'd take his socks and shoes off, he'd "drum" with his socks. They're his "drumming socks." But the last couple weeks, he needs his drumming socks all the time. Today, Blake brought the kids to the golf scramble I was working at, and Nate carried his socks with him and drummed them while running around.

He's also clenching his teeth, where it looks like he has something in his mouth, but he doesn't. And today this progressed from teeth clenching to sticking out his tongue. A lot.

With some of the behavior, I think, Oh, well, it's his age. They all do weird things and go through phases. But when I see some of this stuff, it's totally not normal. I really think it's Minds in Motion, especially the Listening Therapy. This is some powerful stuff. I only hope that he gets over some of this and it's just stuff he has to work through to really get on track. The purpose of all this was to help him stabilize his moods, and to make him more physically stable when he stands and walks. So far, it's backfiring. We're about halfway through the month. It's got to get better from here on out, right? It's really bad, people!