Friday, May 30, 2014

The Seizure Story--Part Two

In case you missed it, Part One can be found here

We arrived at Rady Children's Hospital in San Diego at around 8:00pm, I'd say.  
When I walked in, he looked like the photos below, except he had his little hospital gown on (the nurse and I took it off because he had a bit of a fever and also because his wires were getting a little tangled up).

I took these photos at about 10:45pm...






I don't know how it's possible to feel so relieved and yet so grief stricken at the same time, but that's how I felt when I arrived. Being in the same room with him made me feel like I could breathe again. And yet seeing him in a hospital bed, still fast asleep after all that time, wires and IVs connected to his curled up little body--I felt like someone had wrapped me in a big weighted jacket. There was a heaviness, a sadness that had come over me. It's a feeling that I'm still trying to get rid of, if I'm being honest. 
I was only there for a minute or two before a doctor came in and started asking me questions about the seizure. He then let me know that the neurologist would be coming by the in the morning. Until then, we would basically sit and wait for Curtis to wake up. He had a lot of meds in his system that were used to stop the seizure, he said, and it would likely be a few more hours before he woke up. 
I can't say I remember what I thought about during those hours that passed before he opened his eyes. I talked to him, kept saying his name, whispered "I love you" in his ear so many times. One of my biggest fears when he took off in that helicopter was that he was going to wake up and be scared and alone and wondering why I wasn't there with him. Although I had no control over it, I still have guilt about not being able to make that journey to Children's with him and about him being alone in the hospital for 2 hours. But I was so happy to at least be there when he woke up.

"Curtis! Hi Buddy!! I'm here, it's OK!" I said to him. 
"Hi," he said. 
And I felt like dancing. 
But, of course, I couldn't because the nurse and doctor came in. They looked him over and asked him questions. This kid, as always, amazed me. I was so relieved to know that my boy's mind was still there. That he knew his name and how old he was and that he had a brother and sister. His body? That wasn't working so well. He was very wobbly, and was unable to sit up on his own at all. This worried me, but the doc said it was still from the meds. All in all they were happy with how he looked. But he still had a fever. When Curtis was brought to Eisenhower in Rancho Mirage, he had a temp of 99.1. Nothing too out of sorts, but his temp climbed rapidly and at one point it was about 104 degrees. That was probably at around 3:00pm or so. It was almost midnight by now and he was still battling a bit of a fever, despite the Tylenol they had been giving him. This was a concern. A chest x-ray taken at Eisenhower didn't show infection. His ears were fine, his lungs sounded clear, heart sounded good, and everything else on physical exam checked out OK. All they really wanted him to do was sleep.  

That sounded like a good plan to us! Sleep! Yes! 

No. 
He had just slept nearly 10 hours. And after the doctor and nurse were done with him, he was PISSED. He was so confused about how he got to the hospital. He stayed up nearly all night.

And this is what we heard...all night...

"WHY AM I HEEEEEEERE?"
"I WANT TO GO BACK TO PALM SPRINGS!!!!!"
"GET THIS THING OFF MY ARM!!!"
"HOW DID I GET HERE?"

Part of the time he screamed. The other part he cried. There were blissful moments when he sat quietly and played iPad--but the IV was stuck in his right hand (his good hand) and that made him frustrated and sad (me, too). 

Curtis and bear, just hanging out, 11:45pm Sunday night


I went back and forth between wanting to rip my hair out and wanting to cry. It was exhausting. 
  At some point during that hellish night, we did manage a few winks of sleep. I spent the whole time in that little hospital bed with my boy, warmed by the feverish heat of his body.

Monday morning, they came to the room to give Curtis an EEG. It did not go well because he was so out of control. They could barely get enough of a read to make it worth it. I think they got 7 minutes, when they usually like to get at least 10. I don't even know how they got that. They needed him to stay still and quiet and I don't think he was either for longer than 30 seconds. 

So. Pissed. Off.

Wires, Wires, Everywhere...


They decided not to do the MRI because they did not want to sedate him. He would have needed general anesthesia for the MRI and considering the amount of sedation they needed to give him to stop the seizure the previous day, they decided it was not a good idea to put him through it again. He will be going in for another MRI within the next few months. If you recall, he had his first (and only) MRI when he was a baby. (For what it's worth, they don't expect to find anything new and exciting on the MRI. It's just something they'd like to do, just to double-check and be on the safe side.)
When the neurologist came around, Curtis was still grumpy. He managed to answer her questions without getting too angry, but he was not a stellar patient. She laughed her way through the exam. Thank god she was so sweet, because he was a royal turd that morning. During the physical exam, he was still super wobbly--unable to sit up on his own and definitely not able to stand up. 
After the exam she pretty much told us what I had been expecting. The seizure wasn't from trauma, they couldn't find infection, nothing else was funky. She said she thought it was caused by his congenital brain malformation (cortical dysplasia). Up until she had come in and said this, some of the other doctors/nurses had mentioned febrile seizure, but I was skeptical knowing his medical history. She told me they were going to continue him on the IV medication, (Keppra--an anti-convulsant). Curtis' seizure, as I said before, was a doozy. According to their timeline, it lasted about an hour. That is a long flippin' time for a seizure. In medical terminology, it's called status epilepticus. So they wanted to keep him and watch him another night to make sure he didn't have another big doozy of a seizure, and they wanted him on those IV meds. That sounded good to me. He couldn't walk or sit up anyway, what were we going to do with him? 
She then asked how he was doing otherwise (we hadn't seen this doctor since 2011). She wanted to know if he was still in therapy and was happy to hear that he was. She said she thought he looked great. And, at some point, she mentioned that the seizures were something we had discussed in the past and we all knew were potentially going to happen. To this I agreed, because I did know they were a possibility. But, shit, every day that went by was a day that I thought we were closer to never having to worry about this being his life. It's not the same for her as it is for us, for him. She can say, "I told you this would happen" and walk away. Meanwhile we are left with a little boy that now has a whole new set of  "issues". And it's scary. Really terrifying, actually. And it's kind of a HUGE EFFING DEAL to me.  
But that's that, really. The neurologist just kind of leaves you with nothing, other than to call to schedule your next appointment and to call if there are any MAJOR problems that arise. Ugh. Bomb gets dropped and she goes about her day. That's life.

So Curtis and I just spent the rest of the day hanging out. Playing iPad in the hospital bed. Trying to nap between crying and screaming fits. The neurologist DID totally hook us up and prescribe some Benadryl for them to pump into his IV to make him sleep. She saw how wrecked we were from the night before and how much of a nightmare he was being. Still, that little Benadryl nap only lasted maybe 3 hours. We all needed more like 10. 

The good news is that later that afternoon, his fever broke and it never came back. Who knows what caused it. I heard so many theories from doctors and nurses-- a) virus, which caused fever, which caused seizure, or b) seizures can cause high fevers, so it's the seizure's fault, or c) he aspirated some of his own vomit during the seizure and that caused a little infection, which caused the fever, or d) WHO KNOWS?
Fever was gone.


Monday night--my little man and I slept in that hospital bed all night. There I was, in the same clothes I'd been wearing for 24+ hours, no shower, no makeup, and no desire to do anything except be on that bed in the tiny sliver of space next to my child. We both slept so well that night.

Tuesday Morning--Curtis was bored. 

Do you spot the trend? Sit in bed and play iPad...yawn...

Another group of neurologists came by later in the morning. Residents and the main doctor. The doctor gave Curtis his exam and Curtis was actually pretty cooperative--shocking! This doctor basically said what the other neurologist did. They believe the seizure was due to the cortical dysplasia. He, too, gave the line of, "We've been expecting this." Yep, we were. What the hell? 
But he ended it like this. He pointed Curtis out to all the residents and said, "Take a look at this child. He can walk, talk--he has a great vocabulary, he goes to school, he can do pretty much everything a typical child can...so when you look at an MRI and see something like this [meaning his brain/his MRI]...don't go in and immediately give parents bad news. You never know what the child will be like. He is a good example of that!" Even though our news about the seizure was shitty, this made me smile. I'm always proud of my boy and love that he's a shining star. 

The neurologist said we were good to be discharged, even though Curtis wasn't stable on his feet just yet. 
Hallelujah! I was ready to bust out of this place!

Curtis, however, wanted to take a little snooze first...

As it turns out, we waited another 3-4 hours for discharge papers, prescriptions, etc. to be ready before we could get out. 

When we left, it felt good...and it felt scary. 
While I was in the hospital, I received an email letting me know that Curtis' chart had been updated. This usually happens when I make an appointment. I ignored the email at first, but then opened it and logged in to his account when he was napping that last day before discharge. 

This is what I saw:


He went from two "issues" to five overnight. 

Curtis is now on Keppra twice a day. This is the same medication he was on in the hospital. It makes him grumpy/irritable and it makes him sleepy, but it helps stop seizures so you take the good with the bad. He's taking a vitamin B6 supplement to try to help combat the mood disturbances. Fingers crossed for that, my friends. It's not easy living with a 5 year old that acts like a teenager. I love him so much, but his attitude problem is giving me an attitude problem. Curtis has emergency meds (Diastat) that we would need to use if he has another seizure that lasts longer than 5 minutes. A seizure like that would be considered a medical emergency. Hoping this never happens!

People always ask me if he has he had more seizures... 
Nothing has happened like the big Mother's Day bonanza. The neurologists did warn me that there was a good chance I'd be seeing more seizures. I do think I've seen him have a few absence seizures. It's something I'll have to bring up with his neurologist at his next appointment. Not sure that it will change anything or if this is what they were expecting.  

As much as I wish this would all go away, I am aware of the cold, hard facts:
"cortical dysplasia is the most common cause of medically refractory epilepsy in the pediatric population" (found here). What does that mean? It means that brains like Curtis' usually have seizures that can't be controlled by medication. That's a bridge we will cross when/if we get there, but it's not a fact that sits well in my gut.  

Good news? We have plenty of that, too!
I just got approval from the doctor for Curtis to go back to "motor lab" at his school--so he will get to do that every Monday and Wednesday morning for the next few weeks until summer break. Yay! He's thrilled! And we are moving forward with kindergarten plans, with some adjustments being made here and there in light of what happened. 
We also started swim lessons again this week. That felt good. He's so happy to be back in the water. 

Do you notice something different with his smile? Big boy lost his first tooth last week!


We appreciate all the kind words and well wishes from everyone!

xoxo 

Friday, May 23, 2014

The Seizure Story--Part One

Mother's Day 2014. A Mother's Day that I will never forget and not for reasons one might expect. Not because of the adorable handmade cards and gifts (although I did get those) or a day of pampering (which I unfortunately did not get). It was the day my little boy had his first seizure. And it was a doozy.

It's Tuesday night as I start to write this, 9 days since Curtis had his seizure, and I feel like I'm just beginning to come up for air. Last week was a blur. Too many sleeplessness nights. Days filled with anxiety, constantly watching my boy for signs that something was "off". We're falling back into a routine here, although it's a much different morning-to-night than what we had two weeks ago. All of his usual activities have been temporarily stopped, but we hope to get back to swim lessons and our regular therapy schedule next week. I also have a new sleeping partner. He is 5 years old and as I sit in bed with my laptop typing this, he is snuggled up next to me. I feel safer this way. He is happy to jump into my bed every night and right now I am all about doing just about anything this kid wants.    

Where do I start this story? It's still a mishmash of pictures and events in my head. Bits and pieces of it run through my mind throughout the day.   

For me, the story starts on May 9th, the Friday before Mother's Day. At 8:30am Curtis' preschool class had "Muffins with Mom". If you follow the All About Lefty Facebook page or Instagram then you saw the photo I posted from that special little get-together. He was so excited about this event and had been talking it up all week. As a mom, I live for these moments.



Right after the preschool party, at 9:00am, I had the triennial reevaluation and kindergarten transition meeting. This was the big meeting that I had just written this post about. I stressed pretty hard about this one because that's what I do. Hope for the best, but plan for the worst. Moving on to kindergarten is a pretty big deal--new school, new teacher, new therapists, new everything. Curtis (and I, for that matter) has only known his current school for the past three years. Lots of changes on the horizone
I can report that the meeting went amazing well. Much better than I could have ever hoped, actually. I left feeling so hopeful for the coming school year for Curtis. This day was perfect. 
When Curtis was done with school at 2:00, his older brother and sister and I picked him up and we headed straight out for Palm Desert. This was a last-minute trip that I planned (I couldn't pass up a deal I got on the resort) and the kids were so excited to "get away" for the weekend because it's something we literally never do. It was just the kids and I on the trip--Daddy was staying home. I wanted to make it a great weekend for the four of us--lots of pool time and lounging around.

Saturday, May 10: What a day! We woke up, had breakfast, went to the pool. We weren't there for very long before bumping into some good friends of ours from home. My friend, her mom, and her two girls were there for the weekend (hubby and son were home). Small world, folks, no joke. All the kids spent some time together during the day at the pool and then we ended up meeting with them again later on that night for dinner and some late-night pool time. We all had a blast! The weekend was turning out to be great--better than I could have imagined. The kids were being well-behaved, everyone was having fun...what more could anyone ask for? 

Curtis enjoying a peach smoothie by the pool


Sunday, May 11: We woke up a little late and lounged in our room for a while since we had been up late with our friends the night before. We left the room at about 10:30am. Lo and behold, the pool wasn't open yet! I guess there was a sandstorm the night before and they were still in the process of trying to clean all the sand off the bottom of the pools. Luckily, because it was Mother's Day, the hotel had all sorts of activities planned. There was both a jumpy house and a small petting zoo set up outside the pool area to keep the kids occupied. 
Within a half hour, the pool area was open. Unfortunately for Curtis...the hot tubs were not open. My little guy, no matter the weather, loves himself a "hot pool". Because it was his only choice, into the big pool he went with the rest of us. Curtis lingered near the steps as usual and swam back and forth to me. At some point during the cleaning process they must have added a ton of water to the pool because the water level was significantly higher today than on Saturday. Curtis could barely pop his head out when on his tippy-toes in the shallow end. So I spent 90% of the time (if not more) carrying him around in the pool on Sunday. It was also a lot more crowded in the pool. 
These factors--higher water level in big pool, crowd of people in big pool, "hot pools" not open--made Curtis kinda grumpy. He just wanted to hang out and sit poolside on the chair with me, which I was totally OK with! I could tell he was getting a little tired, too.

Hanging with Mom

We had a great spot right next to the pool, under an umbrella. We ordered some smoothies and ate some other snacks. We were set. Things were good.

12:45pm: Big kids come back to the chairs to drink their smoothies. Everyone is happy. I take a group photo--quite possibly the best selfie group shot we've ever taken...

I honestly could not have been happier at this moment. 


In about 20 minutes, he will start to have a seizure.

A few minutes after that selfie, we took a few more photos. Poolside they had this open-air photo booth set up so you could "take photos with mom," and sis was obsessed with it. She insisted that we all go do this like NOW. So we did. And it was actually kind of fun. We all picked out our props and laughed while taking the photos (yes, even Curtis, although you can barely see his face). 

These photos were taken approximately 5-10 minutes prior to the onset of his seizure. 


So what happened after these photos? I go over the play-by-play every day...

We walked back to our chairs by the pool. I was holding Curtis. The ground was pretty hot by the pool and I was carrying him to protect his little feet. Suddenly, I could feel his legs tense up around my hip like he was holding in his pee. I asked him, "Do you need to go potty?" and he didn't respond. I asked again. No response. And then he peed on me. I quickly released him from my hip and stood him on the ground in front of me. I remember saying, "Curtis! What are you doing, dude?" Lucas was right there and he said, "Curtis why are you peeing right here?" At this point, I'm thinking to myself that Curtis is tired. I tell Lucas that we gotta start getting ready to go because clearly Curtis is pooped out if he's peeing his pants. Side note: potty accidents are not out of the norm for Curtis, so this wasn't a red flag for me that something was terribly wrong with my son. 
Next I went ahead and did what anyone would do (right?)--I took him into the pool to rinse him off! And while I was in there with him, I started talking to him. I asked him questions. He responded to my questions, but without using words. He would nod his head "yes" and shake it "no", but he didn't use words. At one point I remember asking him if he was being silly (still trying to figure out why he wasn't talking). Still, no verbal response. He wasn't really looking at me during all of this, either, he was sort of looking off in the distance. Of course, all the while, I was starting to freak out more and more. While at first I thought he was simply tired, I was now starting to realize that something else was potentially happening. I saw a pool noodle float next to me. I grabbed it and put it in front of him and asked him to grab it. He did. I felt relief for about half a second. He still wasn't looking at me or talking. Something was definitely wrong.
I looked around the pool area for my other kids. The crowds had died down a little, thankfully. Lucas was still sitting by our chairs and was super close to us. I called out to him to go get his little sister--NOW! I still wasn't completely processing what was going on with Curtis, but I knew we had to get out of the pool and I had a feeling things were going to get worse before they got better. Of course, Lucas started to ask a million questions, "Why do I have to get her? Do we have to go? Why? Why? Why?????" AAAAAAHHH! Just do it!!!!! He saw I was serious. He finally left to get his sister. 
I went back to concentrating on Curtis, who was now staring off to the side, head tilted. He still was not responding to questions, not even with a head nod. I turned his head for him, toward me, so I could see his eyes, and all I saw was a blank stare. Nothing. No one was home.
Panic.
I got out of the pool, threw my sarong on around my suit and started high-tailing it out of the pool area. All I could think about was getting to the front of the resort. I saw my big kids slowly exiting the water slide area (which was actually pretty close by) and I yelled to my older son to grab our stuff and meet me at the lobby. At that point, he knew something was wrong with Curtis--and I'm glad I didn't have to scream it across the pool area to him.
The lobby/registration area was literally 5 seconds away from the pool and as soon as I got out of the pool area, I ran. I looked back down at Curtis and in that instant it finally sank in. I knew. It was a seizure. My heart was pumping so fast and, looking back, I can't believe my knees didn't buckle when I looked down at him at that moment. I was carrying him like a newborn baby--it must have looked so strange to anyone that bothered to notice. His eyes were still wide open and fixed, his head was still tilted to the side, he was drooling, and his head was starting to rhythmically twitch. Both of his arms were up near his chest and were starting to twitch, as well.
I reached the lobby and yelled to the closest concierge, "Call an ambulance, my son is having a seizure!". Hearing my own voice shocked me. I was loud, crying, hysterical! I went back into the breezeway area and put Curtis on the ground. Maybe my knees did buckle at the point, who knows. I know I wanted to be out there so my big kids could find me. They came right around the corner from the pool looking so worried. They saw me crying, freaking out, whatever I was doing, I don't even know--God--I can only imagine that scene for them. I just remember looking down at Curtis and seeing his face. His cheeks looked so puffed out to me. His eyes were still wide and fixed and his head still twitching. I didn't know if I should touch him, but I did. I kept telling him it would be OK and that I loved him and that someone was coming to help him. I remember staring at his chest, just watching it the whole time because I was afraid he was going to stop breathing. He looked so rigid and so wrong. Everything was so wrong.
I could hear my kids crying and asking questions, but I couldn't answer them. All I could do was focus on Curtis. 
At some point I picked him up and ran him up to the front drive (where you come when you check-in or valet park). I wanted to be right there when the ambulance arrived. I don't even know if this is proper seizure protocol, I'm guessing it's not. Honestly, if I'd have known how close the hospital was at that time, I likely would have ran him there! I was frantic.
People were gathering around asking if I had called 911. I don't recall if I answered them or not, but I do remember them asking me. I was talking to Curtis. I was telling him he was OK and that I was right there. I was kissing him and petting his hair. He started to spit up/vomit at one point so I had to put him on his side. People kept asking me questions. WHY DO PEOPLE KEEP ASKING QUESTIONS WHEN YOU ARE IN A MOMENT OF CRISIS? All I wanted in that moment was to hear the sound of sirens. 
My kids. My poor kids. They were sobbing, completely confused, terrified. I kept telling them it was going to be OK, but there I was on the ground in hysterics next to their non-responsive little brother. Not very convincing. At one point I threw Lucas my cell phone. He called my mom. He brought the phone to me and my mom was screaming, "What's wrong? What's wrong with Curtis???" She later told me that she couldn't understand a word I said to her--she said I wasn't speaking English. Somehow she made out that he was in trouble. I later texted her which hospital he was going to. They (my mom, dad, and husband) were already on their way up. 
After what seemed like hours, but was more like 5 minutes they tell me, the ambulance arrived. I gave them Curtis' info and they went to work. The hotel staff then went to work on me as I stood there like a zombie with my two older zombie children. You could throw a rock and hit our hotel room it was so close, so I gave my key to a staff member and he retrieved my purse, a shirt (I was still in just my bathing suit and sarong) and clothes for Josie (she was only in a bikini). The hotel staff said they'd give my big kids a ride to the hospital while I rode in the ambulance with Curtis. My head was spinning, and I said OK to everything.
As I sat in the front of the ambulance, waiting to go, I looked out the window and my big kids were standing there crying on the curb. My heart was broken. My kids were in pain--sad, lost, confused--and I couldn't be there to comfort them. I felt like the worst mother in the world. Yet at the same time, I knew I had to be in that ambulance. My little boy was still seizing! Before we drove off, two women came up to the window and asked if I'd like it if they rode to the hospital with my kids. They were mothers, too, and they said they'd be happy to go with them. I said yes (I was saying yes to everything, remember). I'm so glad I did. My kids talked about those ladies later on that day--about how nice they were to them on the drive over. A few days ago, I was on Facebook and was looking through my messages. I noticed I had something in my "other" messages folder. I opened it and found a message from one of the women that rode with my kids to the hospital that Sunday. I couldn't believe it. Instant tears. It feels to good to know that are people like this in the world--women like her that will take time out of their day to help someone that they don't even know. She made my kids feel safe and made me feel the tiniest bit better about having to leave them that day. I hope she doesn't mind that I'm sharing this (leaving her name out...):

Hi kammy. My name is ***** and I was at the hotel on Sunday when your little one was having his seizure. My friend and I helped get your wonderful older kids to the er. I just wanted to tell you what an amazing mom you are and how so brave your son and daughter were. I am sending all my love and prayers to you and your family - what a scary day. I hope your little one is all better and know those docs took good care of him. I hope this isn't too forward and pls no need to connect back I just wanted you to know that you and your kids are in our hearts and prayers. Pls take good care of you and your little ones. Happy belated Mother's Day to a pretty incredible mom!

Of course I wrote her right back and thanked her, but I haven't heard back from her yet. I don't know how I can ever repay her and her friend for their help that day.

The hospital, Eisenhower Medical Center, was so close to the hotel--we were incredibly lucky that day. We arrived in a matter of minutes. When they took Curtis out of the ambulance, however, I was shocked to see that he was still having his seizure. I knew this was bad news. Seizures aren't supposed to last that long. It had been a long time, over half an hour at this point. Luckily, a short while (and a few more meds) later, it stopped.   
I can't say enough about the team at Eisenhower. The nurses and the doctor were amazing. They were so gentle and loving with my boy, talking to him the whole time even though he was asleep. And they took care of me, too. Not to mention my two other babies that had to sit out in the waiting room for over an hour while I made sure Curtis was stabilized (I absolutely did not want them to come back while he was seizing, nor while he was shaking uncontrollably after the seizure stopped). The staff took great care of all of us.

What I can say can is this...nothing prepares you for a moment like this...


One minute we were drinking peach smoothies and taking silly photos and the next minute I was in hysterics, staring down at an empty shell of a little boy, my little boy, just hoping that he wasn't going to die. 

Shortly after he was stabilized, the doctor at Eisenhower came in to tell me that after speaking to the doctors at Rady Children's Hospital in San Diego, it was decided that they wanted him down there--partly due to the length of his seizure (they tell me it lasted almost an hour), but also due to his medical history. Rady was coming up to get him, he said. Via helicopter. My heart sank. To me this could not be good news, even though I knew he was going to be in good hands at Rady. Not to mention the fact that flying terrifies me, so the thought of Curtis traveling, without me, on a helicopter was not something I really felt like adding to this already high-stress day. 

Regardless, at around 5:15pm, approximately 3 1/2 hours after he first arrived at Eisenhower Medical, they flew him south. 

All I could do was stand in the parking lot and watch as they put my little boy, strapped onto a wheeled hospital bed, into that helicopter. I was frozen and in shock. How was all of this happening? 

40 minutes later I received a call that he arrived safely. 2 1/2 hours later, we arrived at Rady Children's and I got to see him again. 

The next two days would bring more answers...I'll save it for another post since this one is already so, so long (and it's taken me 2 nights to write!). 

If you've read all of this, thank you. I've shared it with a few close friends, neighbors, family members. I know others are wondering what happened and still have questions about what is next for him. I don't have all the answers yet, but we do have some. Hopefully I can get to that post soon. In the meantime, keep sending those positive thoughts for Curtis!

XOXO,
Kammy

Thursday, May 8, 2014

What's Right for Lefty?

Curtis has always been my most lovey-dovey child. He is the only one of my three kids that has ever told me that I'm his best friend. He is the snuggliest. He loves to hug. He also says, "I love you", way more than the other two ever did at age 5. Lately, just over the past few weeks, he has started this thing where he will grab me, look me in the eyes, and say, "I love you, Mommy". He does it just about every day. He's realized that if he gets me to stop what I'm doing and if he looks right at me when he says it, it will be more powerful. And one other thing--it's not always "Mommy". Sometimes it's "Mom". That sure sign that they're getting older--that transition from "Mommy" to "Mom". Heartbreaking. *sigh*



Anyhow...my point? My boy/my little lovebug/my best friend is getting so big! 

Curtis will be finishing up with preschool in June. His last day of preschool will also be his 6th birthday. It will be a miracle if I don't shed a tear on that day.

As Curtis makes the transition to kindergarten, there is so much to think about. It wasn't like this with my other kids. They just finished preschool and off to kinder they went. It's so different when you have a kid with special needs. There are so many decisions that have to be made along the way. My head has been spinning. My anxiety has been high, this past week, especially. I've tossed and turned at night. Sometimes I wish I could trust that it will all work out on its own, but I know from experience (my own and that of others) that you can't do that. It is my job to know what is going on with him and to be involved with this process. It is my duty to make sure that his plan for kindergarten is appropriate. It's a stressful task.
For the past few months, Curtis' therapists and teachers at school have been examining and evaluating him. He has been evaluated for both his triennial evaluation (his initial eval was when he entered the school system in 2011, so this eval is required since it's been three years) and for his transition into kindergarten. He's had speech, physical therapy, occupational therapy, and adaptive PE evals. He's been observed in the classroom setting and on the playground. I wasn't happy with a recent speech evaluation that they performed (or rather, with the lack or preparedness on the therapist's part), so I made sure that they had everything they needed ahead of time (doctor records, previous therapy evals, etc.). Can I just take a moment to tell you that if you have a child in the school system (any school system) that is undergoing evaluations of any type--make sure that the people doing the evaluations have the background information on your child. This can be very important! Other than that, I've just had to wait until they were done. I don't know that it will ever get easier to know that Curtis has to sit through those tests. I have been there when he has taken some of them--and a few of them we even filled out at home. It's all very unnerving. Some of it necessary, yes.  
The big meeting to discuss all of this is coming up. Is Curtis ready to move on to a general education kindergarten classroom? Yes. I know he is, no doubt about it. My biggest concerns for Curtis entering kindergarten at this point are 1) safety and 2) falling behind academically due to his lack of fine motor skills. I already know that they don't want to provide him with an aide in the classroom. Am I OK with this? I don't know. Honestly, I don't! Does he need the aide for all of the little tasks in the classroom, or will this just become a crutch and prevent him from progressing on his own? I just don't know. I suppose no one really does. It's a wait-and-see game, and I hate that. I'm a planner. I don't like "wait-and-see". 
If you had asked me a few months ago how I thought Curtis would fare in kindergarten without an aide, I probably would have said I thought he would be OK. But here we are, a month away from finishing up with preschool and there are still things that Curtis has difficulty with--things that "typical" kids his age should be able to do without much assistance from their kindergarten teacher. A few of my concerns: 1) He still has what I would consider a lot of difficulty with writing. He can print some letters, but he can't write them on a straight line. He has trouble grasping the pencil properly. I work on it with him and his OT works on it, but it's just coming along really slowly. 2) Cutting with scissors--straight line cutting is fine, anything else is a mess. And he gets frustrated and ends up ripping the paper. He'd never be able to do a cutting project (or any two-handed project) without one-on-one help in the classroom. Basically, any sort of fine motor skills are still an issue. He's getting better, but he still needs a lot of help. 3) Potty issues. We are still dealing with semi-frequent potty accidents. Some of this is because he has a hard time getting his pants on and off, some of it is just because. I can't get a straight answer out of any doctor as to why he still has potty issues at almost 6 years old. 4) Playground safety. Curtis+ 80 other five and six-year-olds running around like crazy people=danger. His balance is improving tremendously, but it's definitely not 100%. And he gets nervous around large groups. A bunch of little kids jumping and pushing each other on that playground structure just gives me anxiety. End of story.  
Curtis IS doing really great with a lot of things, however. He is beginning to read. I am blown away by all of the sight words he knows. Socially, he has come a long way since he first started preschool. He loves to be in the classroom environment. He also loves to make friends and to be around other kids. He is SO excited for kindergarten (even though I'm not sure he understands it just yet...I'm still trying to explain to him that all of his preschool buddies won't be there). And I'm excited for him.

I don't know yet what the therapists and teachers will suggest for him. My goal? A kindergarten environment that will be both safe and that will provide the best scenario for him to succeed in the classroom. Let's see what sort of plan we can come up with. He will be getting an all new "team" since he's going to a new school next year and I'm hoping to meet a few of them at the meeting. Fingers crossed that everyone is on board to do what is right for Curtis!
 



Wednesday, May 7, 2014

New Gear

I have a lot on my mind, folks, and we are already heading into the second week of May! But I want to first share Curtis' new leg brace since I have discussed it in previous posts but have never shown it. 

I'll start by explaining what it is. It's called an AFO, which stands for ankle-foot orthosis. The main job of Curtis' AFO is to prevent foot drop, which was causing him to trip and fall on his face (especially when he was tired). Curtis only wears the AFO on his left leg/foot.

The process of getting his leg casted was easy-peasy. I only took a few photos because it went by so fast! They wrapped his leg up in a cast using fiberglass tape (just like you would if you broke a bone), set his foot in the position they wanted, let it set for a few minutes, and cut it off. Done! He sat watching the orthotist's iPad the whole time and wasn't bothered at all.

Wrapping the leg with fiberglass tape

Cool as a cucumber

Cutting the cast off


A few weeks later it was ready. It was a lot bigger than I expected and the whole process of getting it on is a struggle, I won't lie. But so far it's doing its job and Curtis isn't complaining about it too much so I call it a success. 



The kids at school asked about it the first day he wore it and he just said, "It's my brace." (Like...duh!) They didn't ask any other questions. Kids are awesome like that.  


Tuesday, March 25, 2014

All About CP



Today, March 25th, is National Cerebral Palsy Awareness Day. The entire month of March is actually Cerebral Palsy Awareness MONTH. I wasn't even aware of this until recently! It should be easy for me to remember--I've always loved March (it's my birthday month), and now I have one more reason to be fond of it. 
I had another short post I was going to write tonight (about Curtis and the process of getting his leg casted for his new brace), but then I stumbled on this great post over at one of my favorite blogs--Love That Max. I thought I'd do something similar, but I'll include a little more info about Curtis. And I'll try to keep it short! If you have the time, read her info, though--it's awesome. She has a great blog in general, so if you're a parent of a kid with special needs, I think she merits a follow on FB. 

I think that, in general, people know very little about cerebral palsy. Most people are shocked when I tell them that Curtis has CP. I was shocked when I was told Curtis had CP. Learning more about it is a good thing. I try to explain it to people on the fly, but I don't do a very good job. I'm still learning a lot about it, too. What you read below will be much better info (said info gathered from various sources around the fabulous World Wide Web)... 
  • Cerebral Palsy (CP) refers to any number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and the muscle coordination necessary to maintain balance and posture. 
  • CP is not a disease and it's not genetic (can't be passed from parent to child). 
  • CP is caused by damage to one or more specific areas of the brain, which usually occurs during fetal development, before, during, or shortly after birth, or during infancy. Curtis' CP is the result of his brain malformations--cortical dysplasia and polymicrogyria. Both were present at birth. The CP wasn't diagnosed until several months after birth.
  • 75% of people with CP also have one or more developmental disability, including epilepsy, intellecutal disability, autism, visual impairment, and/or blindness
  • The CDC has released information indicating that CP is increasingly prevalent and that about 1 in 278 children have cerebral palsy (wow!) It is the most common motor disability in childhood.
  • There is no cure for CP, but treatment often improves the capabilities of a child with CP (now you know why Curtis spends so much of his free time in therapy--and swimming, which has become a new sort of therapy for him).
  • The symptoms of CP vary from person to person. A person with severe CP might need special equipment to walk or might not be able to walk at all. Those with more mild CP might be able to walk, but just need a little extra help (this is the category Curtis would fit in)
  • There are different types of CP, and they are classified based on the type of movement disorder involved:
  1. Spastic CP: Most common type of CP (approx. 80% have this type). People with spastic CP have increased muscle tone. This means their muscles are stiff and, as a result, their movements can be awkward. It's usually further described by what part of the body is affected. Spastic diplegia: muscle stiffness mainly in the legs making it difficult to walk. Spastic hemiplegia: affecting only one side of the body--the arm is usually more affected than the leg. Curtis has Left-Sided Spastic Hemiplegia and both his arm and leg are affected, as well as some of the muscles in his face and mouth (hardly noticeable in his sweet face!). Spastic quadriplegia: most severe form of CP, it affects the legs, arms, trunk, and face.  
  2. Dyskinetic CP: People with this CP have problems controlling the movement of their hands, arms, feet, and legs. Their muscle tone can change--varying from too tight to too loose. 
  3. Ataxic CP: People with ataxic CP have problems with balance and coordination. 
  4. Mixed CP: Some people have symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic.  
  • Crazy, random new fact I learned today (and no wonder Curtis is always so tired...and why he still naps at almost 6 years old!)--people with CP use three to five times the amount of energy that people without CP do when they walk and move. 
OK, I could go on and on. I promised I'd keep it short. I think I gave you your fill of cerebral palsy info for the day. 

Before I had Curtis, the idea of cerebral palsy used to freak me out. When they first told me Curtis had CP, I was completely freaked out! But now, on CP Awareness Day, I don't feel afraid. I am more educated. I have Curtis here with me, showing me what can be achieved. I feel hopeful. Curtis has a lot he needs to work on (geez, don't we all?). I can tell you that we won't stop working. It's what we do. Because Curtis--he's worth working hard for...today and every day.





Tuesday, March 18, 2014

Brace Yourself

Is it March already? I guess so.
I guess I kind of suck at this blogging thing. I usually think about posting in the middle of the day, when I'm away from the computer, out driving the kids to one of their after-school activities--and the next chance I get to actually sit and write is around 10:30pm, when all I want to do is crawl into bed and sleep. I don't see my days getting any less busy in the near future, but I will try to keep the updates coming.

Let me start by saying that 2013 ended well. We had a great Christmas with family and a fun New Year's Eve celebration with friends. We spent New Year's Day at the beach with our dog, eating burritos and watching a perfect sunset. Curtis loves the beach. And he loves burritos. If he cared at all about New Year's, I'm pretty sure he'd think it was the best ever.

We started January 2014 off with our 6-month recall visits at Rady Children's to see the orthopedist and the rehabilitation specialist. 

 


It's nice that they schedule the appointments back-to-back for us (and they are in the same room so we literally don't need to go anywhere between the two appointments), but the appointments still tend to be long. You can count on at least two hours to see the two doctors. I try to plan accordingly for these visits, but it just never works out. Curtis get bored and tired and upset. Generally, I don't let him play with an iPad or my phone, because when the doctors come in and ask him questions or want him to do something, he doesn't want to participate--or he throws a fit when I take the device away (we're still working on iPad etiquette...it's taking a long, long while). That leaves us with coloring, singing, talking, and whatever...for a long time. It gets boring (for him, at least) fast. Real fast.

 

drawing a bug or a monster--something with multiple legs
        





This appointment was no exception. Curtis was not happy from the get-go. He just wanted out of there. I think he just knows by now that he is going to be stuck in that room for 2 hours and he's just like, "no." Especially since there are residents that roll through and do the same things as the doctors and ask the same questions over and over. It gets old. But it's necessary and I understand that. He, unfortunately, doesn't.

Not a happy camper
 


In any case, after cruising up and down the hall several times to examine how he walks and much discussion with both doctors, it was decided that Curtis needed a brace for his left leg. It's going to be something that helps prevent his toe from dropping, which is something he's had trouble with in the past and is something he's starting to have a little trouble with again. I noticed it a few weeks before the appointment and mentioned it to the doctors. Once they had him take a walk down the hall, they noticed the toe drop right away and said that it wasn't too bad, but it was definitely something we should take care of. They did, however, sort of leave the final decision up to me. To brace or not to brace? In the end, I agreed that he should have it--he's taken some really hard falls in the past and I feel like if there's anything I can do to prevent that, I am all for it. He won't have to wear it all the time, but on days when he is walking a lot or when he's playing sports, it will be a good idea for him to have it on.  

 By the way--check it out! Little dude had his first soccer season!!


I won't deny that I instantly questioned my decision. Does he really need this thing or not? UGH! 

So the appointment was done and they sent us off...we will go back in 6 months for another recall visit...

And then Curtis and I cruised around the grounds of Rady Children's (it's kind of a cool place and he wanted to play a little)...

His favorite--the "Incredible Circus" ball machine
 

Frog King--he'll only get this close

Aargh Matey--captain of the ship!



And then, folks...something happened. A sign from above, if you will. Curtis tripped over his own feet. He bumped his head. He cried. He got a red mark on his forehead. And, with that, my previous concerns went away. I no longer question my decision about the brace. It sucks that he has to have it, no doubt, but he needs it. No more boo-boos like this, he's had too many of them in his lifetime :(

Not the best photo, but all up near his hairline it was red


What a busy morning we had...


I'll be sure to show off the new foot gear once it's made. We go in this Friday to get a casting made of his foot/leg since the brace is custom made for him. I'm not quite sure how long it takes after that. 

In other news, a few weeks back I registered Curtis for KINDERGARTEN! Holy moly! Excited, nervous, freaking out, happy, scared, (did I mention FREAKING OUT?). Yeah, it's crazy to think that he's almost there. Very crazy. I'm excited for him.


Wednesday, December 18, 2013

Overdue December Update

I just realized that I never updated after my last "vent" post.
So we had the meeting and I think it went well. 
The good news: there is a new OT at the school and so far I like her A LOT. She seems really with it, on top of things, etc. Complete 180 from the other OT so far. She totally agreed with me about the handwriting goal and said she was "surprised that he didn't already have one." We added it to his IEP. Boom. Just like that. Easy-peasy. Yay.
In the end, I didn't push adding extra hours of OT because they showed me that he was already almost caught up on hours. I have the OT's email and she responds when I email her (something that never happened with the other OT) and see I her around the school (also something that never happened with the other OT)...I'm feeling comfortable with her and with the team's promise that they will "stay on top of it". Trust me...I will keep on them! 
Curtis' speech therapist came in and said that he is doing great. She is going to do a formal evaluation on him in a few months and we are all meeting again to review that evaluation. It is her belief that he will be ready to be released from speech. I have talked to some friends who have kids or have had their kids in speech and they have mixed feelings about this. If anyone has any advice for me about this, please let me know. Curtis has been in speech therapy since he was a baby. On the one hand, I think I'm almost afraid to let him leave speech therapy. Like--what will he do without it? Will he be OK? And on the other hand, I think--WOW, look at him! I never in a bazillion years thought he'd make it this far. To think that we went from being told he may never speak, to having him bounce out of speech therapy before he starts elementary school. It's really unbelievable.    
His preschool teacher was at the meeting. I had told her a few days before that I didn't think she needed to be present at the meeting, but now I'm glad she was there. She really backed me up on a few things, which was great. She also piped in that Curtis' social skills were really "blossoming" this year. It's always nice to hear things like that.
We are all meeting again in a few months. That is when we discuss the speech eval and I think we might also have an early chat about kindergarten. I did ask if they thought he'd be placed in a kinder class at his brother and sister's school. Unfortunately, they can't really say--it's all a matter of what is best for him and every school in the district has something a little different in terms of what they offer for kids with special needs. Of course I want the best fit for Curtis, but I'd be lying if I said it wouldn't be a huge disappointment for him to be at a school other than our "home school". His big sister, especially, would be devastated. We'll cross that bridge when we get there, but we are getting there so soon! EEK! Unreal. 

Other news: Curtis is still swimming, although he's been sidelined a few times by ear infections. I have to be more diligent about putting in swim ear drops after his lessons. He has had outer ear infections, or swimmer's ear. They clear up fast, but are no fun while they are there. He is still working on his front breath and they are also now working on teaching him some elementary back stroke since he is so good at floating on his back! 



A few other photos just for fun--


 Here he is giving Santa his detailed list...

Somehow caught my cutie all alone on the steps after we saw Santa and got this shot...

 I hope everyone has a great holiday!