The tough gets tougher

Clearly I’m not a great blogger.
I apologize if you are someone who actually reads this!
My last post was April 2018–nearly one year ago. Crazy.
So much has happened since then. Curtis finished out third grade. He had a great year. He made new friends, loved his teacher—just had an all-around good year.

Summer was fun and went by much too fast, as always. Curtis spent about a week in Oregon with his brother and sister and dad. They all visited with his dad’s side of the family and had fun camping and exploring Oregon and the Oregon coastline. I have never been away from any of my kids for longer than a day or two so that was an adjustment for me!! After a week, I picked the kids up in Portland and we went on to explore Seattle then went off to Montana to visit with family.

It was a fun summer trip, but not without its challenges. Curtis’s behavior was all over the place. He was almost impossible to bring out to restaurants and was having more frequent bathroom accidents. I always made the excuses of “he’s out of his routine” or “he’s tired from walking around/staying up late”—but I knew this wasn’t “normal”. It was just hard to travel with him—and his siblings were becoming increasingly frustrated with being around him a lot of the time. Not an ideal family situation and not how anyone wants their vacation to go.

We finished up the summer and prepared for everyone to start their new school year!
Curtis is now in 4th grade. I had high hopes for this year—I knew it was going to be more challenging, but we had everything in place in his IEP. We had such great second and third grade teachers and are at such an amazing school.

It wasn’t long before the bubble was burst on that dream. Nothing was working out. His teacher didn’t seem to understand Curtis and his needs and we had a lot of drama very early on in the school year (think “emergency” IEP meetings and lots of discussions with my advocate). There were a lot of safety issues that weren’t being addressed at the school and it took months to get things back into place with that. I won’t go into specifics—but let me say that no parent should ever have to put up
the fight that Curtis’s father and I did for 2-3 months. Meetings, emails, phone calls, signatures—not to mention the anxiety, stress, and sleepless nights. Luckily, most of the school issues have resolved. Yes, it’s mid-February, but they’re resolved.

During this time, things at home with Curtis we’re getting increasingly worse. More bathroom accidents, memory problems, behavior issues. He was at a neurologist appointment when I brought this up. The neurologist was still concerned that he might be having seizures but she didn’t want to make him go through another video EEG. Instead, we increased his seizure meds—by half a pill then a full pill. The change was almost instaneous. He went from having bathroom accidents 4-5 times per week (maybe more) to none. He no longer asked me questions like, “did I go to school today?” after spending a full day at school (yes—those moments scared me—how could he forget a full day of school? But he was. And more than just a few times). We have kept his seizure meds dosage up. Since then he’s had one episode where he’s had an accident and seemed to have memory loss after. We are continuing to keep an eye on this, but assuming he’s having episodes of seizures. This, of course, terrifies me.


A few months ago he had neuropsych testing done again, too. The results came back mostly the same. She still gave him a diagnosis of ADHD (impulsive type), among other things. He has learning disabilities. He has a lot going on. We have seen a lot of outbursts with him recently, he’s always been impulsive, and most of the school-related stuff was spot-on. So, basically— a lot of what she said fit with what we’ve seen. And, honestly, the 30 page report was A LOT to digest. Still trying to process most of it.

We only have about 4 months left of school and Curtis still doesn’t entirely seem to have found his groove this year. Socially he’s struggling. He only has a few kids that will even give him the time of day and I think his outbursts sometimes make those relationships rocky. One of his best friends from last year was a little boy that had just moved here from another state. That kiddo moved away again. His longtime best friend is still around—but this year things are not the same somehow. As he is getting older, Curtis is more aware of his differences—and the other kids at school are less understanding and less interested in making sure that he is “part of the group”. I am concerned that Curtis will literally have no one to spend time with. The thought devastates me.

Curtis is a tough kid. I have done so many things to try to understand him and his complexities. It’s so, so hard. I can put him through a 72 hour EEG and a 6 hour neuropsych rest. I can get a 30 page report that tells me all I should want to know about how he thinks and learns and I still feel like I can’t figure him out a majority of the time. Maybe I never will. Like I said, he’s tough a one.
But not so tough that he doesn’t deserve love. And my fear is that, especially as he gets older and bigger, people around him will stop wanting to try to understand him. They will only judge him. They will see his shortcomings and failures and instead of giving him a chance, they won’t bother.

You can’t protect your kids forever—isn’t that something they say? But I’ll try. I really will. Even if I seem overbearing and whatever else. I’ll try to protect him forever. And I’ll also hope that even though he’s having tough times now, and will surely have tough times in the future, that people can see him and show him love. Because it’s the only way to make it through the toughest of times! ❤️

Battle of the Brace

“I hate this brace.” 

“What do you mean you hate it?”

“I just hate it. I hate wearing it. I just want to be normal—Like the other kids.” 
And my heart breaks. 

“Wait, buddy, did someone say something? To you? About the brace?”

“No. I just hate it. I hate that I walk different.”

I have him come over to me and I pull him into my arms. I rest my chin on top of his head...

“OK. I know. But you know we are all made different, right? So you are made different than me. I’m different than JoJo. She is different from her friends. So, really, it’s normal to be different. And having a brace is just your normal.” 
I pull him in closer. “You’ll be OK, lover.”

“OK. But I still hate it.”

He walks away. 

And I get it. I hate it, too. But it’s not the brace I hate. I hate that he feels like his “different” isn’t “normal”. We all feel that way about something about ourselves at some point, don’t we? (Or maybe at many points). But for him, I know it will be an uphill battle. 

I hate it. 

I hate that because he can’t run as fast as the other kids or because he doesn’t walk the same way, he feels like he belongs in a separate category. Normal vs not normal. I hate that people will judge him and make assumptions about him. 

I hate it because I look at him and I just see my little boy. Different, yes. But he’s mine. 

And, besides...we don’t really mind different over here. 

Actually, we love it. 

**It’s been almost a year since Curtis’s cast came off after surgery and he is still in his AFO almost 100% of the time. He is soon to be 10 years old (yikes) and we anticipate that after this brace, which provides a lot of stabilization for his ankle, he will transition into a carbon fiber AFO for his drop foot. So...we will need to "embrace the brace" for a while longer.

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!!! 

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

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. 

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 

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!

 

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.