Monday, September 8, 2014

School Daze

I am happy to report that we are done with week 3 of kindergarten! Curtis is a happy camper. In turn, mama is also a happy camper.

Here are some photos from the first day of school--
(many are repeats if you follow us on Facebook or Instagram

 Curtis meeting his kindergarten teacher...


Testing out his new playground...



Below is a photo from his first ever "Circle Time" in his kindergarten class. The parents were allowed to stay in the back of the room while the teacher read a book to the kids. The story was "The Kissing Hand", and it was impossible to hear the teacher read it without getting tears in my eyes and a huge lump in my throat. In fact, I was cussing her out under my breath. I wasn't alone. Curtis is in class with a few kids whose moms are my dear friends. We looked at each other with frowny faces and red eyes. These are our babies--the youngest of three kids for each of us. We wanted to run out of the class so they wouldn't see us crying, yet at the same time wanted to savor this sweet moment--to cherish every last second and stay in that room as long as we could before the last "goodbye" and hug. When the story was over, the kids were allowed to come and give us a kiss on our hand so we could keep it with us all day. Curtis choked up for a second when he said goodbye to me and I thought I was really going to start sobbing in front of everyone. I thought he might lose it, too. But then he turned around...brave boy...and he went back to his class. And I turned on my heels and bolted out of the class so neither one of us could look back.

And then...6+ hours later...we were reunited. I could not wait to get this boy back in my arms!


So how have the first 3 weeks of kindergarten been for this boy? Mostly FABULOUS. He is always all smiles when I pick him up. We have had great reports from his teacher (whom I absolutely love so far...thank GOD). The school staff is AMAZING, and SUPPORTIVE in any and all ways that I could ever have hoped for...I am so grateful for all of them. 

 I won't lie to you, though. We have had some issues. #1--we've had a few potty problems. We (teacher, nurse, supporting staff) all are still thinking that it's adjusting to new routines. The teacher and the rest of the staff are working on reminding him to use the potty. I'm working on limiting drinks before school and having him use the potty prior to heading off to class. Fatigue could also be a factor. This leads me to the next problem...#2--he's tired. Just exhausted and in a daze at the end of the day. And a sleepy Curtis is a grumpy Curtis and a grumpy Curtis is not a fun Curtis. By the time we walk home he is often crying and/or screaming at me and/or his siblings. It's a mess. With after school activities we really don't have time for naps anymore. It's an adjustment. We're still working on it. 

As far as class work goes, he seems to be doing OK. We have a formal meeting coming up in a few weeks. It's his 30 day review, and I'll be meeting with his teacher, therapists, and case manager to see how he's doing. I know he needs A LOT of work on his writing still. I see the sheets that come home and I know they are already working on it with him, but he has a long, long way to go. We are still working on it at home a little, too, when I can get him to cooperate with me. He always works much better with his therapists!

Here is a little project he worked on during the first week of school. It's a house depicting the members of his family: light blue=dad, green=mom, purple=sister, blue=him and his brother, yellow=his pets (he only included the cat and dog, no room for the 7 chickens).

So--during the second week of school I received an email in the middle of the day from his teacher. She wrote to tell me that they pulled the tricycles out during recess. The only problem? Curtis' seizure action plan has a note stating that he must wear a helmet when riding a bicycle (or a horse!). So...Curtis was not allowed to ride the tricycles and I needed to bring in a helmet for him to use at school. My initial thought? "This is crazy! It's a tricycle!" 
The seizure action plan form that his neurologist filled out had a few things that were pre-set, standard items already filled out on the form. Examples: "always wear a helmet when riding bikes or horses", "never leave alone in water", "don't linger in high places". I did not think that "bike" included tricycles. I mean...how far is he doing to fall off a trike?? Nonetheless, I know the school rules and told them I'd call the neurologist and hopefully they'd send me a note saying he could ride a trike without a helmet. What was my big deal? I didn't want him to be the only kid on the playground wearing a damn helmet! Sounds stupid, but, yes, that was it. I just really would rather he not stand out in any way if at all possible. However, in the meantime, I sent him to school with a helmet. He loves to ride trikes and I didn't want him to miss the opportunity the next day while we waited to hear back from the neurologist! (See below...in our driveway on his own trike.) 
So I left a voicemail with his neurologist and a day later heard back from her assistant. Here's the deal--she DOES want him wearing a helmet. Even on a tricycle!! 
Wow. Lesson learned.

Here he is at home...now wearing a helmet at all times on his tricycle!

More fun happened during that second week of school! We received a call one morning that Curtis was stung in the face by a bee. He went to the nurse's office and said he felt OK to go back to class but they called to let us know it happened. I'm proud he was so brave to stay in class!  Not sure my older kids would have chosen to do so!

This is a photo of him from later that night--he was stung right below his left eye. You can see how it was starting to swell up later that night. 

So...the next morning when he woke up it looked like this!! YIKES!!!


We decided it was probably best to not send him to school looking like this. He went to the pediatrician in the morning and checked out OK and ended up back at school at around lunch time. It took a good 4 days for the swelling around that eye to go away. Terrible!! My poor buddy!

As if things haven't been crazy enough with trying to adjust to new school schedules and running around AFTER school with big bro and sis to all their stuff--Curtis just decided this week that he absolutely had to get back to swim lessons. I agreed that he was long overdue! We have been meaning to get him back for weeks now, but couldn't figure out how to work them in. Well, there's no time better than the present, and we squeezed those lessons in. Thursday was his first official day back at Callan Swim School and he did great. All the swimming at grandma and grandpa's this summer surely helped!! 
{Sorry, no swimming photos--next time!}

We are ready to tackle week 4. I think every week is just going to get better and better. Will we/he figure out the potty issues? Yes, (god, I hope so!). Will the fatigue and grouchiness go away? I think he's still just adjusting so, yes, I do think it will. The academic stuff? Handwriting and whatnot? He is finally starting his therapy services and I just know that I will start to see a huge improvement once those go into full effect (especially once OT gets cracking!) 
Like I said at the beginning--he's happy. He wants to go to school and is comfortable there and hasn't cried or whined or ever said that he doesn't want to go. To me, that is success! That is half the battle, maybe more than half the battle! The other things we can work on as long as he's content with being at school. 

So, I say YAY!!! 

Sunday, August 17, 2014

The Night Before The Big Day

Well, this is it. Tomorrow is the big day. Kindergarten. The day we have been working toward and preparing for for so long is finally here. 

I know in my last blog post I said that I was OK. That even though I was thinking about his first day, my anxiety wasn't consuming me. Well, as of a few days ago, it started to consume me. Insomnia (my old friend). Mini crying spells in the middle of the day. More crying at night. Constant stress and anxiety throughout the day with all the "what-ifs" going through my head. It's just so hard sometimes--the struggle between knowing that I have to give him a chance to do everything that any other kid would do, but at the same time wanting to protect him and keep him safe. 

When you have a child with special needs, sometimes you forget how "different" they are until you see them around a large group of "typical" children. Curtis hasn't been in school for a few months so I really kind of forgot how he stacked up to other kindergarten-aged kids. On Friday, his school had a pre-arranged kindergarten play date. They do this every year on the Friday before school starts, which is the day the kids get their teacher assignments. It's a chance for the kids and parents to hang out and say hello before the first day of school. Curtis was excited to go see a few friends of his, and the park where the play date is always held is right around the corner from our house. Within the first 2 minutes of being there, I was reminded of how different Curtis is from other 5 and 6 year olds. These kids were running around. Jumping. Racing up the play structure and speeding down the slide--lightning fast! Up on a grass hill they were playing "duck, duck, goose" and Curtis sat down to join while I stood back and watched. He sat there in amazement (as did I) while these boys and girls ran so fast around that little circle. And I felt so sad. Curtis will never run like that. Or jump like those other kids, or go up and down the play structure so fast. In fact, he was so overwhelmed by it all that after the first few minutes he just wanted to go home. And I didn't blame him. Because I did, too, a little. All those kids moving so fast worried me. I kept thinking that if one of them bumped into Curtis he was going to fall down and cry. And then I thought, "What if that happens when he's at school and I'm not there to comfort him after he falls?" Ugh. Anxiety

I just have to take a deep breath and keep my fingers crossed that he'll be OK. Hopefully he finds some other kids in his class that are a little more low-key and they can all play in the sandbox together!

So how does Curtis feel about school? He could not be more excited. When we went in last week for his little assessment at the school, he was disappointed to find out he wasn't staying there for the day. 

Tonight, we got his new backpack--a Christmas present from last year (thanks Aunt Laura and Uncle Loyd)--and stuck it on the hook next to his big brother and big sister's backpacks. Yes, he has a crazy spiky backpack--and he loves it!! 


Then he asked if we could get the lunchboxes out, so we did that, too. He's been wanting to get his lunchbox out and use it ever since it came in the mail about 3 weeks ago.


We also have his outfit all picked out and waiting. His big sister helped with that. I don't think Curtis really cares about that all too much--ha!


Also, to update on the post from last week for those of you who don't get the Facebook posts--Curtis' MRI came back the same as it was when he was a baby. Nothing new, which is good and what we all expected. His next neurology visit is in 4 months unless something happens before then (no thank you!) The neurologist wrote up Curtis' seizure action plan for school while we were there, too. Of course, while I believe the school staff is great, I really, really, really hope that plan never needs to go into effect. 


This sweet boy of mine...

He is snoozin' up a storm tonight and ready to take on kindergarten tomorrow. Even with all my fears, I am so, so excited for him. He's been looking forward to being a big kid and going to his brother and sister's school for so long. Now the day is here. 
Good luck, lover! We are cheering for you!!
xoxo


Thursday, August 7, 2014

Summer, School, and other Stuff

It's August and summer is coming to a close. I know I say it every year, but it really seemed to go by so fast. In 11 days, Curtis starts kindergarten! My mind is blown! On Tuesday he goes in for his little kindergarten "assessment". My biggest concern? The fact that we have to be there at 8:00am! (We've been sleeping in until 7:30 or sometimes even 8:00am, which is late in this household). 

I had to start a whole new system for school paperwork for Curtis now that he's starting kindergarten. If you recall, I showed you my system for all of Curtis' "stuff", including his school IEP papers, in this post. That filing case is filled to the brim and about ready to burst. And even though there is a method to the madness, it really is a mess. In kindergarten, Curtis will still have an IEP (he already has on in place, actually). I also met and spoke with the school nurse over the summer to discuss his medical needs. We had spoken on the phone prior to the seizure, but after the seizure I found out that getting him to school would require a lot more paperwork. I filled out what I could and the rest went on to his neurologist and pediatrician. 

In any case, here are a few photos, because they always seem to shock people (including me) when I show them all spread out. 

Here they are in their folder 

And all spread out...


Yes, that is just the preschool years paperwork. 2 years. Crazy, right?


Here is what we have going for kindergarten so far... 


And this is the new set-up for kindergarten paperwork. It's more portable (so I can take it with me to IEP meetings, meetings with the school nurse, even to his doctor appts if I have forms that need to be filled out).
crappy iphone photo, apologies

I won't even bother with getting into my fears and anxieties over the start of kindergarten (maybe I'll save that for another post on another night). They are there, as they would be even if everything about him was "normal" health-wise. It's just how it is. I'm accepting these feelings and trying to not let them overcome me. Believe it or not, I'm actually sleeping well at night. Will that change as the first day draws nearer? Probably. But I think Curtis can succeed in school, as long as his health remains stable. And so far we seem OK with that...

After the seizure I kept a very close eye on Curtis (still do, obviously). He did have some strange activity, especially while sleeping. Lots of movement, strange things with his eyes and lots of head movements, leg movements. I was told to take videos and so I did. Tirelessly. 

This is a photo of my computer while I'm watching a video of Curtis sleeping. I'd set up a camera and record him napping, because that is when he'd jerk and move around the most. Then I'd watch the video.

I must have spent hours taking and looking at videos. Some will be shown to the neurologist and discussed with her. Maybe this was side effects from his meds? Or seizure activity? Most of it has settled down now (he's still sleeping in our bed)--all I really see from him now is leg jerks, like restless leg syndrome. During the day he has seemed fine and I haven't seen anything that resembles a seizure. I did see what appeared to be one or two absence seizures right after he came home from the hospital. But nothing since. 

Curtis had an MRI last week. This is something that was scheduled after he left the hospital in May and they ordered it just make sure that nothing new was present in his brain. I don't know the results yet, but I will be getting them tomorrow at his neurology appointment. We haven't seen his neurologist since his hospital stay after the seizure. I'm assuming that no news is good news, but I will give an update on that on the Facebook page tomorrow or over the weekend. Going in for that MRI was stressful, no doubt, but Curtis was a champ. 

Post-MRI popsicle

Those sleepy anesthesia eyes...


My boy is such a trouper. He was so scared to get on the bed to even start the process. He cried and cried (as did I). But when it was done, he was completely fine. No tears, no problems at all. God, I love him! 

Moving on to several totally different subjects and a lot of photos all at once :)
In case you don't follow on Facebook or Instagram...or even if you do...

This has been our summer...

Curtis graduated from preschool



And he turned SIX!


We renewed our Legoland passes and his love affair with Benny and the Spaceship! continues :)

We just got back from our annual summer family vacation in Montana, which is always amazing. Curtis once again let loose and did some things he doesn't usually do. You can read about our trip last year here. He loved the canoe and the paddleboard and did both on his own a bit. He swam in the lake in our "secret spot" all on his own, which he's never done before. He's really showing some independence (just another sign that he's ready for kindergarten)! 

Standing on a paddle board in some shallow water--great for testing balance

Lake McDonald, Glacier Park...playing with rocks and sticks


We have been having some issues with loud noises and at first Curtis didn't like riding in the boat because he thought it was too loud...


But he warmed up to it pretty fast...

And soon was going crazy with me and loved to go fast :)

Venturing out of the boat and into the lake to swim! So brave!!

Swimming with big bro and sis in the lake! They were so excited!


We have been going to the beach and swimming and doing some school shopping--soaking in the last few days of summer. 

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