IEP, IFSP, PT, OT, LMNOP...RU KIDDING ME?

Short answer--no. I am not kidding you. When you have a kid with "issues", your life becomes a series of acronyms/initialisms/whatever the appropriate terminology is (I'm going to say acronym!) I've been thinking about them a lot lately because I have an IEP meeting this Friday. What is an IEP, you ask? I am here to answer that question! (And, OK, whenever I hear IEP, I automatically start singing, "You down with IEP? Yeah you know me! You down with IEP? Yeah you know me!") Sorry,  I was a teenager in the 90s, I can't help it.)

So I guess the question is--where do I start? I suppose I should start at the beginning--with the MRI. That was probably the one that started it all. Everyone probably knows what that stands for, right? MRI stands for Magnetic Resonance Imaging--it's a medical imaging technique used in radiology to visualize internal structures of the body in detail. Curtis had an MRI of his brain and it provided the neurologist with the information she needed for his diagnosis. The MRI set us up for the rest of the acronyms that would pretty much become part of our daily life. I'm going to try to list every stinkin' one that is or has been a part of Curtis' life. Hopefully I can remember them all! I'll try to give a brief definition (pulled from wikipedia or some other website) and then I'll let you know how it plays a part in Curtis' world. I'm going to try to go in chronological order, too. Let's see if I can manage that. 

Sound good? Here we go...

• PT--Physical Therapy. PT is a health care profession primarily concerned with the remediation of impairments and disabilities and the promotion of mobility, functional ability, quality of life and movement potential. We also call a physical therapist PT, as in "Curtis sees a PT 3 times a week" (and he really does see one that many times).
• AzEIP--Arizona Early Intervention Program. This was the program that we called when we first got the diagnosis. I found them on the internet (yes, the neurologist nor their office staff gave me any info--sad, right?) I had no idea what was going on or what to do and these two ladies came to my house, loved on Curtis, and explained everything.
• IFSP--Indivual Family Service Plan. This is a plan for special services for young children with developmental delays. The plan is made with the help of a service coordinator from an early intervention program. An IFSP only applies to children from birth to three years of age. Once a child turns 3, an IEP is put into place (I'll tell you what that is later). The IFSP includes goals and how such goals will be met--basically, which therapists will be assisting the child to meet the goals. Curtis had his first IFSP at 9 months old!
• OT--Occupational Therapy. OT is the use of treatments to develop, recover, or maintain the daily living and work skills of patients with a physical, mental or developmental condition. We also call an occupational therapist an OT, as in "Curtis sees an OT 3 times per week" (and he really does!)
• SLP--Speech Language Pathologist (otherwise known as a Speech Therapist). I couldn't find a good definition online, but I think everyone knows what a speech therapist does. Curtis sees his speech therapist twice a week when he goes to preschool. He is currently working on "consonant clusters" and the /k, g/ sounds. 
• CP--Cerebral Palsy. Curtis has spastic left hemiplegic cerebral palsy. Some people, especially on sites where this is any sort of chatting or talking about different types of CP, will further reduce it to LH for left hemiplegia or left-sided hemiplegia.
• SDRC--San Diego Regional Center. This is the organization in San Diego that helps people with developmental disabilities. I met with a service coordinator from SDRC when we first moved back to San Diego and they helped us get PT, OT, and speech services set up for Curtis. I had/have a lot of personal issues with this organization--I won't go into it in depth here. Our state is broke, which is sad, and I think the program has suffered greatly because of it. They are disorganized and dysfunctional to say the least. Unfortunate for those who need their help.
• EEG--Electroencephalography. OK, I could get all scientific on you, but this is basically the test they do to test for seizure activity in the brain. Curtis had his EEG at age 2.5. His results were negative for seizures, which was great news considering kids with cortical dysplasia usually have seizures. We're hoping it stays this way!
• CCS--California Children's Services. The California Children's Services (CCS) program provides diagnostic and treatment services, medical case management, and physical and occupational therapy services to children under age 21 years old with CCS-eligible medical conditions. Examples of CCS-eligible conditions include, but are not limited to, chronic medical conditions such as cystic fibrosis, hemophilia, cerebral palsy, muscular dystrophy, spina bifida, heart disease, cancer, traumatic injuries. At first, we were told we didn't qualify for these services since we had insurance and didn't meet the financial qualification. Alas, his medical diagnosis makes the financial requirement unnecessary. All these hoops, people! I'm telling you. It's complicated. You should see my files.
• MTU--Medical Therapy Unit. This is where a child receives their PT and/or OT services through CCS. There are usually several MTUs throughout a county and you are assigned to one based on your location. Ours is located about a half hour away. The drive it kind of a bummer and we are always late because it's in the morning not long after I have to get the other two kids off to school. Mornings are generally not great around here!
• IEP--Individualized Education Program.  An IEP defines the individualized objectives of a child who has been found with a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would. In all cases the IEP must be tailored to the individual student's needs as identified by the IEP evaluation process, and must especially help teachers and related service providers understand the student's disability and how the disability affects the learning process. Curtis' first IEP was put into place at age 3. This is when his services through SDRC were stopped and services through the school district began. The transfer process was scary and nerve-wracking. We had to go through a whole new set of evaluations, have meetings, set goals, sign stacks of paperwork, etc. We also had an unfortunate lapse in services. Curtis turned 3 in June and the school year didn't start until mid/late August. Legally SDRC didn't have to provide PT/OT/speech for him after June 19th, 2011. And they didn't. So we had to pay for 2 months of services out of pocket. Not cheap. Not fun. But definitely necessary.
• APE--Adaptive Physical Education. A carefully designed physical education instructional program for a learner with a disability. Basically, it's a half hour mini PE class for Curtis and a few other kiddos. They each have specific goals that they work towards. He has APE at school twice/week. I honestly don't know why they have this AND PT. I guess APE works more towards playground type goals. Whatever it is, I've watched sessions before and Curtis loves it. They play music and have fun. It's all good.
• IPP--Individual Program Planning. From the California Department of Developmental Services (DDS--ack another one!) website--the IPP "assists persons with developmental disabilities and their families to build their capacities and capabilities". This is some random meeting that I had with a new service coordinator from SDRC after our original coordinator was dumped (don't ask, she was no good). We did this when Curtis was 3--just after he started receiving services through the school district. I guess it was just a "re-grouping" sort of meeting. We were no longer getting services from them, so it wasn't an IFSP anymore. I don't know. Kind of useless.
• ESY--Extended School Year. In order to prevent any sort of regression, the school district provides some therapy services during part of the summer. This is called ESY. I think last summer Curtis had something like 3 weeks of OT and APE. No speech, which was a bummer. But something is better than nothing!
• FAPE--Free Appropriate Public Education. I honestly had no idea what this was until our IEP meeting last summer. Here's the definition: an educational program that is individualized to a specific child, designed to meet that child's unique needs, provides access to the general curriculum, meets the grade-level standards established by the state, and from which the child receives educational benefit. Because of this, Curtis was allowed to be placed in the mainstream preschool class and be pulled out for his therapy sessions. It's confusing, but he still falls under special ed as he has an Orthopedic Impairment (OI--there's another one!). So Curtis' preschool was paid for by the school district, which was something I was not expecting. Now, this year, it could be something different. I was warned last year that since he's turning 5 this June, they might decide he's ready for kindergarten (he's not) and if I choose to keep him in preschool another year, it will be on my dime (that's fine with me). So we'll see how that goes--I'll know at the IEP meeting on Friday!

Now do you see what I mean about the craziness of all those acronyms/initials/whatnot? It's a lot to remember, right? And if you don't know what they mean and you have a child with disabilities--take my advice...you better learn them fast! Because, trust me, the doctors and therapists and teachers will all expect you to know them. Some people need to know more, some need to know less, and some are specific to certain states or areas, but some (like IEP, IFSP, PT, OT) are known by every parent of a child with a disability. It really is our second language. Get us in a room together and it is like we are speaking in code. Come to think of it, we should be able to count it as a language. You know, on an application or whatever. If someone could come up with a cool name for it, I think it should have a place down there right amongst French, Mandarin, Yiddish. Why not? For some of us, it's taken years to learn and perfect this language!

But, honestly, I wish my mind wasn't bogged down by all these letters and this 'secret language' sometimes. All of it makes my head mushy. And I probably wouldn't be thinking about these acronyms and all of this craziness if I wasn't worrying about this IEP meeting that's happening...tomorrow. If you know about those meetings, you know they are just--ugh. The meetings are pretty stressful, even if you are confident that things are going to be OK. And I am pretty confident about tomorrow. But you just really never know. I'm hoping things stay more or less status quo for Curtis for the coming school year. He's happy with his preschool and his therapy routine and my hope is that they are cool with things staying the way they are--only having him move up the next level of preschool, of course. I'm hoping they don't spring any big changes on me. So...

if you can--keep your fingers crossed for us for tomorrow!


And because I don't like blog posts without photos...

 This is my super fancy filing system for holding all of the acronyms in our life. This box holds all the IFSPs, IEPs, PT/OT/SLP evaluations, and various other shenanigans. All very important stuff. I refer to it all the time. I'm going to need another box soon.

 Curtis thought the box was pretty cool. "MOM! I see my name!" He proceeded to try to rip out all the files and mess up my whole system, but I distracted him with shiny things and candy :)

The Boy Who Grew Gills

I haven't really even been blogging long enough to include a link to the post about the swimming lesson mishap. You can just scroll down a bit to read about how they were, well, sort of a disaster for a while there. But, in case you don't want to scroll--here is the post.

Luckily, the swim instructors know what they are doing. Curtis' instructor has been in the water teaching kids for a long time, so when I approached her after his second lesson of full blown crying and asked her what I should do, I knew I would take her advice--whatever it was. What was the advice? To disappear. And that is what I did. The pool we go to has an area, right next to the pool (so I can still see everything and take a million photos and video) that is blocked off with some fencing. So, on that first day after she gave me my instructions, I just plopped Curtis in the pool, told him to have fun, and walked away. And guess what? He did fine. He did great, in fact. He had his best swimming lesson ever. And every lesson since then has been just as good, if not better. Now he doesn't want to get OUT of the pool! He actually cried yesterday because we had to LEAVE! He wanted ONE MORE TURN! Come on, kid, make up your mind! haha! Clearly, I'd rather have him crying because he loves it so much rather than screaming and shedding tears due to fear and the fact that he hates the water and wants to be out of the pool. So I'm OK with a little fussing over not wanting to get out of the pool. But only a little fussing. ;)

So, here it is--May 23, 2013--and I'm going to post a few videos of Curtis swimming. I can't believe it happened so fast. Mind you, we are still in the very early stages of swimming lessons! But I am honestly blown away by how quickly he picked this up. He is kicking his legs and moving his arms. The boy is on a mission! We are all so excited--big bro and big sis ask to see videos after every lesson (yes, they know I'm standing there, hiding, taking videos and photos--ha!)

Want to know what else is kinda cool? His OT told me the other day that his left hand seems like it's opening more and is more relaxed. She asked what we were doing differently and when I mentioned swimming her eyes lit up and she said, "I bet that's it! The swimming makes their body feel so different and he's moving that arm and hand around in the water so much!" How crazy is that? It could be totally unrelated--who knows--but both his OT and PT agree that swimming is great therapy for him. 

Here are a few videos for you of our little fish:

Make sure you put these videos on full screen mode since they were shot with my phone and from behind the secret fence so the quality isn't great. (Full screen mode is the little open box in the lower right-hand corner of the screen, just click on it and it will open the you tube thing up to full screen)--another tip is to click on the gear in the lower right corner and change the quality from "auto" to "480". This will make the picture MUCH clearer!

#1: Longer of the two videos, he's the one off to the right near the white thing on the side of the pool. He is swimming toward his instructor in the black baseball cap (and he disappears behind the blue milk crate for a second)

#2: Short video--again, make it full screen. You see him swimming to his instructor in the black cap.

Holy Shirt! And pants, and shoes, and...

Clothing. 

I think it must be every hemiplegic kid's nemesis. Have you ever tried getting dressed one-handed? If not, I think you should try it one morning. I did it, and I can tell you that it's not easy. Now try getting undressed. Try to put socks on. Try getting your pants down when you need to go to the "potty" really, really bad. ACK! It's so frustrating! 

Curtis is just getting to the age where he wants to dress and undress himself. "No, I'll do it all by myself, Mom!" is something I hear on a daily basis. Multiple times a day, actually. Sometimes I love to hear it. It means he's becoming more independent, that he wants to try more things and do more on his own--that's a good thing! But other times, like when we're trying to hurry out the door and he wants to put his own socks on and I know it's going to take eleventybillion hours to do it, I have to admit that I just sort of wish he'd let me do it. But I have to let him try. He's a big boy now. He has to know how to do these things.

There's kind of a lot of little things that these kids of ours have to know how to do. I mean, think about it. Underwear, shirt, pants, socks, shoes--all going the right direction or put on the proper foot. And don't get me started on buttons, snaps, those little hook things that they have on some pants instead of buttons or snaps, zippers, shoelaces, velcro, blaaaaaaaaaaomgsomanylittlethingsmyheadisgoingtoexplodehowwillheeverlearnitall! Phew.

So, I made a little list of the things he CAN do. And I'm pretty impressed by it, actually. For an almost 5-year-old with a functional right arm and only a "helper" for his left hand/arm, I think this is pretty darn good!

As of today, this is what he can do all by himself:

• put underwear on (OK, sometimes they're backwards, but we're cool with that) and take them off
• put elastic waistband pants or shorts on (again...backwards is OK here--we switch them sometimes before leaving the house) and take them off
• pull elastic waistband pants or shorts up and down well enough and fast enough to go potty on his own (not going to lie--I have to clean the bathroom floor more than I care to, but he IS a boy so I'd probably be doing that anyway)
• take socks off
• take shoes off

And this is what he can do with a little help:

• put socks on (this is pretty huge--socks are really hard to put on, especially when they're so small!)
• put a shirt on and take a shirt off (again--really hard to do one-handed or even with a helper hand)
• put slip-on shoes on (he can get the right one on, but not the left)

These are things that we work on daily. I wish we could say that we work on ALL of these things EVERY day, but, honestly, there just aren't enough hours in the day sometimes. Luckily, he does work on most of these things every Wednesday morning in occupational therapy at CCS (California Children's Services). Just to explain, his occupational therapist at CCS helps him work on what they call "medically relevant" things--like dressing himself. Her main purpose is to work on self-help skills or "activities of daily living". So she does different activities with Curtis to improve the function of his left hand and arm so he can do things like put on his own shirt and zip his own zipper--stuff like that. This differs from the occupational therapy that he gets twice/week through the school district, which is, obviously, geared toward helping him be successful in a learning environment.

I thought I'd include a little video that I took of Curtis practicing putting a shirt on last week at therapy. His therapist usually starts every session with him putting a shirt on. Sometimes she gets him to put shorts on and we also usually have him take his socks and shoes off and then put them back on. This will give you a good idea of just how hard he works. It might not look like much...but it's huge progress! (And notice how patient he is with himself, I love it.)

Note: we really aren't supposed to video in there, but no one else was in the shot, so I was given the OK. 

Also, there is lots of background noise in the video so you might just want to mute it--there were other people in the room that were talking REALLY LOUD and we were saying nothing, really, so if you mute you won't miss anything.

Enjoy!

Inspiration

Curtis has always been a timid little dude. He's always seemed to know his limitations. Which is something I've been grateful for. He's cautious. Maybe too cautious. But, again...I'm OK with that. Or, at least, I was OK with it.

He's getting older. He'll be 5 years old in less than two months! (Don't get me started...I have no idea how that happened so fast). And although I would still like for him to lean more towards being the "better safe than sorry" type, I also want him to try new things. I want him to push his limits a little. I want him to challenge himself. You have to understand--when I say this, I don't mean that I suddenly expect him to take HUGE risks. We're talking about a kid that just recently gathered up enough nerve to go down a slide. Baby steps.

Last week brought along something new for Curtis...swim lessons. No, it's not the first time he's been in the water. We are a water-loving family. And this kid is no exception. He loves water...

 Curtis in Grandma and Grandpa's pool--one year old

 on vacation--17 months old

 at the beach--21 months

playing in the Flathead River--2 years old

swimming at Grandma and Grandpa's again--age 3

vacation--4 1/2 years old

But swim lessons? This is new territory. Something different. I was unsure how he'd like them, to be honest. He doesn't mind having water poured over his head in the bath. He's OK with taking showers. But he isn't fond of going under water in the pool. I knew this would be a challenge for him. I also knew, from experience (my oldest went to this school when he was a baby), that this swim school would get his head under the water on the first day.

To my pleasant surprise, the first two lessons were fine! In fact, he loved day one. Loved it! He couldn't stop talking about it. Lesson two was good, as well.

Photographic evidence:

 Perfectly content--swim lesson #2
 

And then came lesson #3 just this past Monday. He cried almost the whole time. "I'm done, mom?" he asked repeatedly during the last 20 minutes of the 30 minute lesson. It broke my heart. I wanted to let him give up, I really did. I hate to see him scared and upset for any reason. I saw him tense up every time the instructor began to tilt him to the side to ease his face under the water. She is so gentle and so sweet, but as soon as he was done with his turn, he still cried.  

 Unhappy--I mean, does this break your heart or what?

So listening to him cry almost the whole time made me really upset, naturally. And it sounds awful, but I found myself sitting there wondering if this is all for nothing.

And then, of course, my mind wanders and I started to think about other activities, other sports, and whether he'll ever be able to "really" play them. Or whether he'll ever even WANT to. Maybe he won't want to because there will be something about his disability, his CP, that will hold him back. He'll think he can't do it, so he won't even want to try...that sort of thing. And just the thought of that makes me really sad, of course, because I loved playing sports as a kid. I loved being on a team. And I really think Curtis would like to play a team sport! But what if he just can't? I mean, he plays soccer in the backyard with his sister. And we play t-ball out back. But can he play on a team? And what about that swimming??

I swear to you, all of this garbage is going through my head on Monday after that ill-fated swim lesson. And I'm getting bummed. Curtis is napping...pooped out from all that swimming and crying. So I decide to hop on my phone and go on Facebook and look at this new group I joined a few weeks back. The organization is called CHASA and it stands for Children's Hemiplegia and Stroke Association. They have a regular group on FB where you can post questions or comments and then another page called the "Happy Place" where you go to post awesome things that your kid has done or achievements they've made or milestones they've met...things like that.

So I jump on the "Happy Place" (I needed some good news) and the first thing I see is this video of a little boy, Connor. He is 9 years old and he plays baseball--on a regular team. He has right-sided hemiplegia (so the opposite side from Curtis). The video below is of him hitting in his first RBI. You have to watch this, I think it's just awesome...

(A big thank you to his mom for allowing me to post this on the blog.)

So I watched this (OK, so maybe I watched it like 5 times) and all my doom and gloom went away. It was just the thing I needed to see and at just the right moment. Curtis can do these things, he really can! If you've been on his new FB page then you've seen the little video I posted of him hitting the ball off the tee. I mean, why couldn't he play for a team? What was I thinking? And he loves the water, so it's just a matter of him getting over his fears and whatever weirdness is going on with these swim lessons before he can learn to swim. Right? Why am I giving up on him so easily? Why am I second-guessing him and his possibilities?

I just have to say that this is why I love, love, love this new group that I've found on Facebook. Seeing the things they post about their kids (kids just like Curtis!) and what they can do has given me so much hope! I recently asked if any of their kids could swim and several of them responded that, yes, their kids swim, and they swim well. Some are even on the swim team for their school. Wow! Talk about inspiration. 

Time to push the limits, Curtis! You can do it, dude! If you can go down a slide--something we thought you'd never ever do, not in a bazillion years-- then you can do anything!

--I wrote this post on Tuesday, April 30th but didn't publish it. 
Curtis had another swim lesson today, Wednesday, May 1st. He cried again. We made him push through the lesson, though. I asked the instructor what would help--should I get in the pool with him or should I disappear? She suggested disappearing, since he looks at me right after he's done with his turn and says, "I want my mommy!" Ugh. I had to hold back tears today. It was awful. I was both sad and frustrated. Tough day. 
But...I'm not giving up on him! I look forward to sharing videos of him swimming one day! 
Stay tuned...

Super Duper

I want to say thank you to everyone who has taken the time to come to this blog and read Curtis’ story. I received so many notes from people—texts, emails, messages on Facebook, etc. Some were emails from really good friends that obviously knew about Curtis’ "issues", but I guess I had never gone into depth about his diagnosis. They seemed happy to hear the whole story, and that makes me happy. I even got an email from Curtis’ retired speech therapist! Awesome. Everyone had positive things to say and sent lots of love to my little man.

So, thanks, you guys. Really.

A lot of people said things that made me blush. I appreciate every single compliment (keep them coming if you wish, my ego loves you for it)...but one label came up a few times and it got me thinking. A few people called me Super Mom. I'm not going to lie, I loved hearing it :) But am I a super mom? Puh-lease! Oh, how I wish I was! But, really? No. I, personally, don’t think so. Have you ever seen me in the parking lot of the grocery store with my 3 kids? Pretty sure you wouldn’t be calling me super mom (or anything even remotely close to that) during those lovely moments. There’s usually tears involved (mine, most of the time). And yelling (again, mine, but you often can’t hear it over the kids’ screaming so I don’t know if that counts). The truth is…I’m just a mom. I’m an average, run-of-the-mill, stay-at-home mom. I even wear “yoga pants” at least 4 days out of the week (I actually do exercise when I wear them, which I think makes it OK...maybe?) But, seriously, that’s how average I am.

 
Would a super mom's kids take a photo like this?? ha!

And when I think back to those first few weeks after Curtis’ diagnosis, I remember feeling like I was doing an even less than average job as a mom. And I probably was! I was so lost, I don’t know how I cared for my other children during that time. I was grieving the loss of the baby I thought I had. That baby was gone and this new baby was much more complicated. Taking care of this baby wasn’t just diapers and onesies and Baby Einstein, folks! We were entering a world of therapy and hand splints and neurology terms and IFSPs (if you know what that is—"hi!") and it was all happening so fast that I think some days I must not have even known which end was up. I had a two year old and a 5 year old home during all of this? What the?? Our lives were never going to be the same. His future was uncertain and I felt like everything I knew about how to raise and parent a child went out the window. I knew nothing about seizures or hemiplegia or brain disorders!

But let me tell you what happened after the grief and the numbness wore off.  I literally woke up one morning and I went into Obsessed, Crazy, Kick Ass Mama mode (yes, I just made that up). You’ve probably been there or know someone who has experienced it—it’s when you go from normal to fierce in 3.2 seconds. I’m convinced that every mom has it. It can come on at any time, really. For me, it was when my child’s health and well-being were at risk and I was the one responsible for trying to make it better. I had to snap out of it and do something.

One of the first things I did, after I was all cried out, was get back online. What I read about cortical dysplasia and the other “stuff” was not pretty, but it had to be read. At least I thought it did. I had to know what I was up against. I wanted to know what all the possibilities were, even if they terrified me. I became obsessed with it. To this day, Curtis hasn’t had a seizure, but I wanted to know what one would look like and what I needed to do if he were to have one. It was important to me. After that, I started paying attention to his therapy stuff. At that time, the physical therapists wanted to work on his trunk strength. They wanted him sitting up. They also wanted him crawling, so we worked on that. Occupational therapy wanted to work on his left hand and arm—opening the hand, reaching for things, stimulating the arm in any way. Whatever they worked on during therapy time, we also worked on at home during non-therapy time. If there was a toy they used during therapy that he liked, I went out and bought that damn toy so we could have it at home. Again, obsessed! I even tried to get big bro and big sis in on the action, “woohoo! Therapy with baby brother!” I was determined to get this kid functioning!

 A few months after starting therapy--reaching with his left hand for the first time

Wouldn’t you be just as determined? Yes. You would be. You wouldn’t just sit back and say, “Oh well, he has something wrong with him, that sucks. I guess I’ll just sit around and do nothing.” Would you? No. I don't think so. So I really don't think I’m some super mom that has done all these magical things.  I think I'm just a normal mom. One that loves her kids and will do anything to make them OK.

The point is, I really think that you would do the same thing for your child if (God forbid!) you found yourself in a similar circumstance. It's what you do when you're a mom. So, you know, maybe you’re the super mom. Or, whatever…maybe we’re all super moms (and super dads—hi, dads! You rock, too!)

 
One of my favorite photos--me and my sweet boy when he was about a year old

Little Things

When you're a kid with hemiplegia, sometimes even little things are really hard to do. 

Take peeling a tangerine, for example...pretty easy for you or me, right? But not so easy if you have trouble using one of your hands. 

And that's a bummer because Curtis loves tangerines. You know those little Cuties? He would eat 10 of them if I let him.
Recently, he's been asking to take little bits of the peel off himself--so I'll start it and then he'll take off the last few pieces of the peel. But in the past few days, he has insisted that he peel the whole thing himself--start to finish. It's a mess (picture the juice of the tangerine dripping all the way down his little arms and onto his clothes, the floor, everywhere)...but he does it. And he is so proud.
So am I.

About Curtis

Welcome to our new blog! We've decided to start this as a place to share updates about our little dude. He's growing up fast! We get questions about him constantly--from friends, family, and...everyone. So hopefully this will be a good way for us to share some of what's going on in his world. Big bro and big sis will make appearances on here periodically, too, I'm sure--but the emphasis will be Curtis.

Here is some background info about Curtis--how we first discovered something was wrong, the tests that were done, our initial reactions, and what we did after his diagnosis...

(warning, it's a bit long)

On June 20, 2008, Curtis Loyd, our third child, was born. He was a healthy 7 pounds, 7 ounces, born at 38 weeks and 2 days gestation via a planned repeat c-section. His delivery was uncomplicated. He was a calm little love bug compared to his crazy, energetic older siblings.

(Baby Curtis with big sis and big bro--age 2 and 4, respectively)

At 6 months old, right around Christmas of 2008, I started to notice that something was "off" with Curtis. He was reaching for toys by then, but he would never reach with his left hand. In fact, when he'd reach with his right hand, his left hand would be balled up into a fist and held close to his body. He also seemed a bit "floppy"...he wasn't yet sitting on his own and didn't seem like he was close to reaching this milestone. Friends and family members tried to tell me that all of this was normal, that he was OK, but my instincts told me that something was wrong.

(Christmas 2008--Curtis was 6 months old. Notice the clenched left fist)

I made an appointment with our pediatrician's office at the end of January 2009. A quick exam by the doctor confirmed my suspicion. Something was definitely not right and she gave me a referral to the pediatric neurologist. I left the office in shock. I went to the parking lot and called Jon, crying, completely freaking out. I was scared. I knew something was wrong, but to hear it confirmed by a doctor made me terrified. What was wrong with him?

I went home and called the pediatric neurology department at Phoenix Children's Hospital (at the time, we were living in a small town about an hour and a half away from Phoenix, AZ). A few weeks later, in February 2009, we made the trip down to Phoenix to see the neurologist. I had no idea what to expect, but I was hoping she'd give us some sort of good news. Or at least that it wouldn't be bad news. I was hoping it would be something that could be fixed. Or maybe something that would go away with time. Or...I don't know. She looked him over and pointed out all the things that we already knew. He had low muscle tone--he was about 8 months old now and still wasn't sitting up on his own. He also wasn't reaching with his left hand and his left hand/arm was still clenching close to his body when he reached with his right hand. When we placed him on his belly, he couldn't push up to straight arms--he always did an army crawl position (with his forearms on the ground instead of his hands). Her initial guess was that he had a stroke in utero. I couldn't believe it. Yes, I had heard of this happening, but it didn't ever cross my mind as something that would happen to my baby. She told us that we needed to start physical therapy with Curtis immediately--that, regardless of the diagnosis, he would need therapy. She also ordered an MRI to be done on Curtis as soon possible. Unfortunately, "as soon as possible" at a busy children's hospital is more like "in several weeks". So, we had to wait. (note: a lot of this story involves waiting)

On 3/12/09, Curtis finally went in for his MRI. We drove down to Phoenix early in the morning, sick with nerves. I'll never forget waiting in the little room and having the nurse explain how they'd come back and get him and what they'd do to sedate him, how long the MRI would take, and what would happen when they'd come and get us when the MRI was complete. I remember the feeling of handing him over when they came to get him--like I wanted to run in the other direction. Like I wanted to scream, "Eff this! I don't care if there's something wrong with him! He's fine! He's perfect!" But, of course I didn't do that. I handed him over and I turned to Jon and cried. It was the worst feeling. They took him, my baby, and off we went to the main waiting room where we sat and...we waited. I stared at the door, waiting for them to call our name to tell us it was over and that we could go see him. I swear that hour seemed to take forever. I spent the entire time going back and forth between staring at the clock and the door. Then they finally called us. As we walked down the hall, I recognized his cry instantly. I went back and held him and felt so sad...he looked at me with blurry, tired, foggy anesthesia eyes. I felt so bad for him. I knew he wasn't in pain, but he must have been so confused. They let me rock him and nurse him. It took him a good 5 minutes before he finally calmed down enough to relax in my arms. But then it was done. It was over. He did fine.
 

(post-MRI anesthesia eyes)

 Now all we had to do was wait for the results. More waiting...

And when I say waiting, I mean waiting. We waited over a week before I finally called the doctor's office to see if the radiology report came in. The doctor said she had the results but wanted to wait for our appointment to tell us the information. Our appointment wasn't for another 3 weeks! There was no way I was going to wait that long, I just wanted answers! I had been agonizing over this for months now. I finally convinced her to tell me over the phone. I was in tears at this point. And so came the news...Curtis was born with a brain malformation. It's called cortical dysplasia. At least that was the main finding on the MRI. She said that there were other little things that the radiologist wrote in the report, but she believes they are all secondary to the cortical dysplasia. She didn't get into treatment options or a prognosis with me, really. She asked if he had started his physical therapy and I said yes. She was happy to hear that he was doing well in therapy and made a point to tell me that "babies amaze us every day with what they can do". She did say that we should expect Curtis to be in some form of therapy for a long time, if not forever. That was the only info she gave me at the time. Of course, I spent a few minutes looking up some info on cortical dysplasia online...but I quickly stopped because I feel like the internet often gives a "worst case scenario". Here was the simple definition of cortical dysplasia that I found:  
Cortical dysplasia is a congenital abnormality where the neurons in an area of the brain failed to migrate in the proper formation in utero. Occasionally neurons will develop that are larger than normal in certain areas. This causes the signals sent through the neurons in these areas to misfire, which sends an incorrect signal. It is commonly associated with seizures and may be associated with some level of developmental delay(s). Instead of using medication to suppress the seizures, surgery is increasingly becoming a popular solution for the problem.
I was heartbroken. And scared. This was my baby. I cried...a lot. And I holed myself up in my house and felt sorry for myself and for my child. And wondered why all of this was happening to us. And wondered what it all meant and what the future was going to look like for my sweet boy.   

The 3 weeks passed, and we finally went down to meet with the neurologist again. She showed us the MRI images and gave us an in-depth explanation of Curtis' brain. His brain, basically, does not look pretty. There is a lot going on--mostly on the right side of his brain (which is why the left side of his body is affected). One of his ventricles is grossly enlarged. He has polymicrogyria, which basically means that there are a lot of little grooves on the outer surface of his brain that shouldn't be there. He has some clefts in the brain that shouldn't be there. To put it in simple terms, he has a few things that are larger than they should be and a few things that are smaller than they should be and some things that shouldn't be there at all. Everything happened in utero during the development of his brain. I immediately asked if it was something I had done and she reassured me that it was not. This was most likely a freak genetic 'mishap', she said. Still, as his mother, I feel like I will always hold some guilt for this. 

So what did all of this mean? 
She told us that a lot of things were going to be, basically, question marks. That we wouldn't know what was going to happen until it happened or didn't happen. Clearly he was going to have motor problems--he already had them. It was possible he would have learning disabilities and a speech delay, as well. The main plan of action was to start physical, occupational, and speech therapy as soon as possible. The main concern, however, was seizures. She said the fact that he hadn't had a seizure yet was a good sign. Most babies are diagnosed with cortical dysplasia shortly after birth due to seizures. We obviously had to be on high alert for any sort of seizure activity. We also had to have frequent recall visits with the neurologist. 

So where did we go from there? 

Curtis began weekly speech, occupational, and physical therapy sessions immediately after his diagnosis. We were lucky that he was diagnosed at a young age and he was able to get early intervention.

In August 2010, when Curtis was 2, we made the decision to move from small town AZ back to San Diego. A big reason for the move was because of Curtis. I was terrified that he was going to have a seizure and we'd be so far away from a children's hospital. I also knew that if we wanted the best in terms of therapy for him, we would need to be in a bigger city. Phoenix Children's Hospital was a good hospital, but it was 1.5 hours away from us and we had no interest in moving to Phoenix! So back to San Diego it was. The process of getting all new providers for speech, OT, PT, and a new neurologist, however, was a lot of work. It took months and months, was very stressful (paperwork, meetings, evaluations, you name it)...but, of course, Curtis is worth it. Luckily, we have found some of the BEST therapists here and Curtis made HUGE improvements once he was set up with these amazing therapists. For example, he was only saying a few words when we left AZ (well below average for a 'normal' boy of 2+ years old). His new speech therapist suggested right away that he needed more than just one session of speech per week. Together, she and I busted our butts and advocated to get him approved for extra speech therapy...and we got it! We saw a change in him almost immediately. Now, at age 4, we can barely get the kid to stop talking. And to think that at one point his speech therapist in AZ told me that he might never speak! His OTs and PTs have also been just amazing. I really couldn't have asked for better therapists. If you need a therapist in San Diego--contact me! I can give you some names :)

In winter 2010, Curtis started up with his new neurologists down at Rady Children's in San Diego. I think it was after meeting with them that I first read (maybe in the discharge notes?) the words hemiplegic cerebral palsy. I remember thinking to myself, "He doesn't have cerebral palsy. What are they talking about?" Long story short--I did some research, chatted with a few of his therapists, and discovered that, yes, he does have cerebral palsy. I always pictured a CP kid as being in a wheelchair and severely disabled. Clearly, this is not the case. My kid has CP! (Quick definition courtesy of wikipedia: Cerebral palsy (CP) is a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.) Hemiplegia means 'one side' and for Curtis, it's his left side. Curtis has left hemiplegic cerebral palsy. So there's that info for you.

 Anyhow, the new neurologists scheduled him for his first ever EEG to check for seizure activity. At the time, he still wasn't speaking as much as a kid his age should, and they were concerned that his speech delay was due to seizure activity while he was sleeping. So he had his EEG, which was easy and quick and nothing like the MRI (thank goodness). The EEG didn't show any seizure activity, but it did show some 'abnormal excitement' in the brain, which was enough for them to want to put him on some anti-seizure medication. It was only two pills a day and they thought it would help settle that excitement and perhaps help with speech. His speech actually did improve quickly after he started the meds, but no one is certain if it's coincidence or not. He was only on the meds for about a year before they weaned him off because they decided that everything else about him was so 'normal' that they'd rather 'treat the child and not the diagnosis' (cool, right?) He's been completely fine off the meds. In fact, as of his last recall visit late last year (2012), he's been completely released from his neurologist's care (unless there's an emergency or something bad happens--fingers crossed) because they say he is looking totally 100% amazing. I can't even tell you how shocked and blown away I was by that news. Never would I have thought that I would hear one of his doctors say that to us. 

So, as you can see, we've come a long way. And it's been a long, long road. Curtis has worked very hard. There have been a lot of tears from this kid, I won't lie. Curtis is now 4 years old (he'll be 5 in June). He's had physical therapy, occupational therapy, and speech therapy several times a week since his diagnosis when he was just a baby. That's a lot of work for one little boy. He's a big boy now, but he still needs a lot of assistance with many things--getting dressed and undressed, going to the bathroom, using play structures at the park and school, taking the lid off a marker, holding paper down to color, opening a book to read, etc. Given the chance, he will use his right hand exclusively for just about any task. We spend a lot of time trying to get that left hand (“lefty”) to help out!

But he can walk, talk, jump, run, ride a tricycle, walk up and down stairs (with a handrail present), go down a slide (a big deal because he was terrified of slides for a very long time!), feed himself, drink from an open cup, and do many other things that a "normal" little boy his age can do. He goes to a mainstream preschool where he is taken out of class a few times during the day to see his therapists. He no longer needs to wear any braces on his feet/legs or hands/arms, but he may need to at some point in the future, especially if he chooses to participate in sports.

 

Huge milestone--first day of preschool!


He's a tenacious little guy, to say the least. One day the list of things he can do will be much longer than the list of things he cannot. Of that we are certain!!

Thanks for visiting!