Friday, August 4, 2017

OT in Vancouver + Zone Regulation

The first few weeks after the move were a whirlwind between unpacking and getting the kids registered for school and then having snow days on top of it all. It was chaos around here.

One thing I super love about their new school is the amount of papers sent home with them about activities in the area. They bring home information on swimming lessons, dance programs, soccer league, basketball sign-ups, day-camps, etc. It is so helpful, especially being brand new to the area and not knowing what all is available and where to go to sign them up for the extra things. One of the papers sent home was a flyer for flag football, which HD really really really wanted to do. We agreed to sign him up, but to do so, he needed a sports physical. That gave me some motivation to get him into the doctor so we could begin the process of finding another occupational therapy place.

By the end of January, HD and JP were signed up for flag football, and HD had a referral sent off for more OT. A few short weeks later, our insurance had approved a place which had an opening for OT so I jumped on it. Then came the stack of papers to fill out and questionnaires to answers. (It's seems never ending!)

As therapy was winding down in Missoula, I was given a handout on implementing a sensory diet for HD but we never discussed it in full as we had other more pressing issues to tend to. On one of the questionnaires I filled out in Vancouver, I had noted several auditory things I had been seeing with HD in the last several weeks/months. Such things included him *always* making noise, simply because he could. He loves loves loves to listen to his music loud - like I can hear his headphones blaring in the front of the car when he sits in the back. He frequently forgets what has just been said too. His OT took note and asked me at the end of his first session if he usually has a blank stare about him, like you're talking through him, to which I lit up YES! ALL THE TIME! Turns out these auditory things that I noted are just a piece of his SPD, specifically an auditory processing disorder where he is under-responsive to sounds.
HD has been enjoying playing in the big gym at OT. (I had to fight the urge to climb into one of the trapezes - they look so comfortable!) In this activity, he was not knowingly, working on perseverance, listening to directions, and following rules. She had his several Star Wars guys around the gym and he couldn't touch the floor but had to find them all. Some gave him special powers, like being able to touch the ground for three seconds at a time. He was really frustrated at the end because he couldn't find them all, but he was able to push through with some help.

Color Zones of Regulation - ThingLink
https://www.thinglink.com/scene/783079912645853185
In our first few weeks at OT, we picked up where we left off when it comes to our emotions. Being able to name our emotions is huge so we've been spending a lot of time at home naming how we're currently feeling, myself included, and then giving an example of what we can do to get out of the zone we are currently in. For example, I might say, "You know, I'm feeling like I'm in the blue zone right now because I'm tired. I think I'm going to take a quick walk around the block to wake up so I can get back into the green zone." Ms. Gail has became an "emotions queen" and is quick to point out who is in what zone at what time. Usually when I ask HD what zone he's in, he would be in the yellow zone because he'd be bouncing around out of control, and just overall being reckless. When he gets into this zone, it can be quite a challenge to get him out of it, especially if we are in a public place -like the other day at the dentist. Or several weeks ago when I took the kids to have dinner at a restaurant with grandma and he couldn't sit in his seat to save his life. I literally wanted to curl up into a ball and ugly cry. 

At home we do have several tactics we use to get him back in to the green zone. I let him take out his energy on building himself a "break spot" which is a fort in a quiet spot of the house, even though it usually causes quite the mess. The dark is really calming for him. But I can't just put him in a closet and be like, calm down dude. He has to want to do it. I recently made a weighted blanket for him, and let him pick out the fabric, and he often uses it at bedtime to help calm his body. We even pull it out in the daytime when we're relaxing and watching tv. HD also loves listening to music so having him wear his mp3 player around the store helps to keep him in check.

He's been getting SO GOOD at being able to label what zone he's in, and then successfully get himself back down to the optimal green zone. I'm going to go on a long tangent and try to paint a picture of my afternoon for you. Last month I took the kids to the library, by myself and it's not something I particularly enjoy doing but we had some books that were due that day so we had to suck it up and go after school. Honestly just getting from the parking lot to the entrance is a struggle for me. With all of them. We can't seem to walk. EVER. We go over expectations (which was recommended by HD's OT) before we get out of the car - typical things like, we need to use our walking feet and quiet voices, stay together, etc. I'm not asking the world of them. But out of the car and onto the sidewalk we go, and the foot race begins. Before we're even half way there, all three have ran ahead and I'm speed walking behind with a stack of books.

When I catch up to them, they are in the revolving door running it around, while people are attempting to enter and exit it. Once they've all cleared the circular door, they make a beeline to the second floor where the kids book are, until I whisper-shout at them to come back down and return their books. Now they're arguing over who gets to put what books in the slot. With enough patience, we make it to the second floor and head over to the chapter book section to find HD and JP a few new books to read. I've already lost Ms. Gail. Whatever. HD now wanders off (no, he probably ran off after I told him to settle down) as I'm helping JP to locate his Magic Tree House books. Found Ms. Gail pulling chapter books off the shelves and struggling to put them back. Lost JP while helping her, all the while keeping my eyes peeled for the third kid who hasn't been spotted for 10 minutes. Let's wander over to the story book section and hopefully find HD and a few cat books for Ms. Gail. Found the cat books, found JP again, and I can hear Ms. Gail now a few rows down exclaiming about the princess book she found. Oh and look who we have here...HD wanders over to us, like he hasn't been lost for the last fifteen minutes. "Oh I was just playing on the computers over there." You know, with the headphones cranked up, completely zoning in on ABCMouse.com. "You said to go calm down..." Ideas before actions dude. Tell me where you're going. Now JP has wandered off again, but they seem to have a sixth sense and know when mom is leaving so all three unite with me as I'm checking out books, just in time to argue over who gets to place the books on the scanner and who's typing in the code... 

We've been at the library for all of twenty minutes and it's not time to go home yet so I reluctantly take them to a park downtown that we hadn't explored yet. I'm already on edge over all the running at the library and the whining, but the weather is soo nice out so I suck it up and pay $2 for parking and we (the kids) sprint to the park. I sat on the bench and watched them play for a while and could see HD getting back into the yellow zone. He yellow zoned at the library, but used the computer to help him calm down get back to the green zone. Since we're at the park, I don't so much care what he does, as long as he's nice to the other kids around him, and doesn't start throwing sand around. He carried on about his ways as I pushed Ms. Gail in the swing and kept eyes on JP. Out of nowhere, I watched HD stop playng and start wandering off like a zombie so I took Ms. Gail out of the swing and had her go play while I followed HD, as some distance behind. By the time I caught up to him, he had got himself cozy in a patch of grass that was shaded by several trees. I joined him on the ground and we looked up at the trees and the clouds together for a few minutes. "What are you doing over here?" "Oh I just needed a little break." And now I'm trying not to cry. Just when I'm really starting to wonder if OT is even helping him, he pulls this number on me and he's back in green zone playing nicely. (I'm ending my story there, before I get worked up again thinking about how I thought I lost JP when tending to HD. The struggle is real.)

OT is paying off. We might go broke trying to pay for it, but it's working. My wild child is starting to self regulate that my dear friends is priceless! I'm going to go get a tissue now. My baby is growing up!

Monday, July 31, 2017

A Neuro Exam Provides Explanations

As our time in Missoula was coming to an end, we were able to squeeze HD in for a neurological evaluation, as recommended by his OT, so we could have a better picture of what problems HD was facing. A year ago I was presented with that opportunity and I passed on it, but this time around, though I was still hesitant, I proceeded with the process. More forms and more questionnaires. It seemed endless.

His neuro exam took two weeks to do. The first week was a parent plus child meeting. More questions - how does he sleep? Talk to me about school. Tell me about home. During the duration of our meeting, she was observing him, often asking him questions too. I think it's also notable that having eye contact is a huge struggle for him, and he clearly showed that during his observation. (At home when he's re-telling stories, or being spoken to, he cannot keep eye contact. At all.) The following week was a series of "games" for HD to complete. The session took about three hours to complete so it was something where I dropped him off, went to work, and picked him up later. The following week, his neuro doctor went over the results with just myself present.

I should have taped the audio of our discussion. I'm kicking myself for not. It was clear to the doctor that HD does have Executive Function delays. To sum it up, he recommended to continue with OT because we are seeing significant gains with his emotional regulation. He also confirmed that while he does present a lot of symptoms consistent with ADHD, he doesn't feel there are enough to say, yes, he does have it. (That will continue to be monitored though.) A lot of what he said was spot on though. While we would have the option for trying medications, we both felt we should try modifying his diet first. (That's a topic for its own post!)

His doctor explained to me how HD's brain was processing memories and it completely makes sense. Think of your brain as a file cabinet. Some people are able to sort through their memories and file them accordingly - like by topic for instance - so when it comes time to recall them, they are easily found. HD on the other hand, is not really able to do that yet. Instead, everything is stuffed at the front of the cabinet. Recalling things that just happened are easy because they can easily be found at front, after maybe moving a few pieces of paper. Things that happened a while ago are harder to recall because he's digging through a random "stack of papers" to find it. It was very obvious when that theory was applied to his everyday life. Take math for example. They will work for weeks on end on a particular way to, say, add numbers and he finally understands it. But then weeks later when it's time to apply it, he's completely stumped on how to get the problem done. As a parent, helping him with homework is beyond frustrating because I know he knows how to do it.

Sleep is another hard topic too. As I mentioned before, we have struggled with bedtime for YEARS. After I was done fighting naps to happen, bed time was at 7:00pm. By the time 7pm rolled around, JP was ready and Ms. Gail just fell into that routine too. HD was ready for bed at that time too, but he struggled with falling asleep. When he was finally asleep, he would sleep for a good 11 hours. In fact we had a 7:00 bedtime up until we moved. HD needed that extra hour or so to get his body ready for sleep. It didn't matter what time bedtime was, it always took an extra hour, at least, to get him calmed down enough for sleep. Because of that, his neurologist recommended we try giving him a little bit of melatonin about half an hour before bedtime. BEDTIME WAS A BREEZE for the rest of the time we were in Missoula. Five minutes - ten minutes and he was OUT. Did I mention he was often sharing a room with JP + Ms. Gail + me? I wanted to shout in excitement! Bedtime overall has been much better in the last several months, even though I stopped giving him melatonin on a regular basis. Now I only use it when I can tell bedtime is going to be rough. Sometimes he'll even ask for it after trying to sleep for hour and is still awake.

Towards the end of our meeting, we touched on his social life. He's never really had a group of friends to play with - he usually just plays with everyone. In our discussion, and those vent sessions with Robin, it was made clear that he doesn't have the skill set yet to be able to build and maintain relationships. Often times on the playground, he'll play with kids but isn't able to pick up on their social cues that they've moved on to play something else. He's left playing by himself and he doesn't realize it.

Both HD and I were sad to have to move just as we were becoming accustomed to our new schedules and the changes we had implemented into our lives. I was nervous to start over again. Building trust is huge for OT's and their patients and it did take HD a little while to build that trust in Missoula, so to start over again was going to require a lot from HD. Moving and starting over can be really hard on kids, but I think overall he's adjusted as well as expected.

Thursday, June 29, 2017

HD: The Start of Our OT Journey

If you look at HD and watch him for a while he looks like a normal kid. That's because he is a normal kid - his brain just processes things differently than a typical kid's brain. He is so so so smart too but he often can't show it on paper. Ultimately I want him to have friends and I don't want him to struggle with school. But reality is often not what we want it to be. When it was first suggested that HD could benefit from a little bit of occupational therapy, I didn't even know what occupational therapy meant. What do they even do at occupational therapy and how could he benefit from it? I'm not even close to the right person to answer those questions, so I'll just give you my view of it.

What is occupational therapy?

The best way it's been described to me, it was posed as a question. "What matters to you?" is the question being asked by therapists, not "What's the matter with you?" In our case, engaging in good social behavior (you know, stop pushing and shoving when you're excited and such) was one thing that mattered to us. Occupational therapist are there to help with those problem areas by giving them tools to use to build skills to help them with everyday life. While I've only had experience with pediatric OT's, they aren't limited to just helping children succeed - they are able to help people of any age.

I don't openly tell people that my son goes to therapy, but occasionally it comes up in conversation. I'm not ashamed of the fact that he goes, but I personally have had a negative connotations when I heard the word "therapy" and I can't help but to believe I'm not the only one with those same feelings. More so, I always feel the need to explain why he's going after people give me the "he looks normal" look. Again, he is normal, and I don't want him treated like he's not normal. We're just trying to develop some of his skills that are a little bit behind what is typical for his age.

What did OT look like for HD when we first started?

I was really nervous going to our evaluation appointment. I had brought all the forms and questionnaires I was asked to fill out. As our OT looked through them, HD busied himself with Legos and Ms. Gail played quietly with the kitchen set in the corner of the room. HD was calm and collected as the evaluation began. Honestly, this was the ONE TIME I didn't want him to be. I wanted his OT to see what I was dealing with. It was a bit frustrating for me.

What the therapist did see, that I overlooked though, occurred while HD was building Legos. There was a small bin of pieces and a stack of cards for him to look at and then build what he saw. He built the designs for quite a while until it got too hard and he quickly gave up. Now that it was pointed out to me, it was very obvious that when posed with a challenge, he quickly gives up and wants nothing more to do with it. This is very common with his school work too, which in turn causes a strain on his academics.

After pushing the Legos aside, he went over to check out the kitchen with his sister and immediately grabbed something from her without asking for it - and he was mean about it. That behavior is very common with him. He struggles a lot with aggression. It often starts by grabbing things without asking, and then leads to pushing, hitting, or kicking when he doesn't get his way with his siblings. JP had quickly learned to defend himself, and as they get older, their fighting tends to get so much worse. One of my concerns for the therapist was HD's aggression. I didn't want to bring Ms. Gail with me to the evaluation appointment because I knew that it would inevitably lead to problems, but in this instance, I'm slightly happy it did. Just earlier in the year at the end of 1st grade, HD was suspended from school for choking two students on the playground and later kneeing one in the crotch. I needed help with his aggression.

Because we didn't have a lot of time left before we moved, we weren't able to work on a lot. In the short amount of time that we did have though, HD made significant progress. I sat in on several sessions with him and his OT so I could have a better understanding as to what they were doing, and what he was learning. Because aggression was a significant concern for us, our therapist opted to work on developing his awareness for his emotions first. To do that we watched and discussed "The Emotional ABC's." We watched about 10 minutes of the movie each week and then talked more about what each feeling looked like in his life. I was surprised as to how hard he often struggled to name feelings and emotions. No wonder he's had problems expressing himself!


To help with his emotional impulses, we started using the "Pause, Rewind, Play" toolbar to have him start thinking about his actions. For example, say JP throws something across the room and hits him with it. Before he reacts, he needs to pause and breathe.  Then he needs to think and name the feeling he's feeling as he rewinds, and think about the correct way to respond. Did it hurt? Is he mad? Was JP mad when he threw it? Then he needs to "play" and react appropriately to the problem. What ways could he respond? Throw it back at him? Hit him? Use his words? It's a big process for him to go through in a matter of seconds. At home while he was still learning the steps, I explained to him that if he was ever in a situation where he didn't know what to do, to yell " PAUSE!!" and I would come running to help him go through the steps together. If he was able to successfully call for help and react appropriately, he'd get a little prize from me. It could be as a little as an M&M but it worked. Don't get me wrong, there were still times when it didn't work. It wasn't fool proof, but it was part of the learning process.

As each session would begin, HD and his therapist would come up with a visual plan for their meeting. Using a dry erase board, together they would draw out pictures to describe what they were going to do, and for how long, while using a timer to keep them on task. (He didn't even know he was working on time management & awareness.) Even though HD didn't necessarily want to watch the Emotional ABC's video, knowing that time in the gym would happen later made watching the video more tolerable for him.

To give him credit, the gym was pretty sweet though. There was a small ball pit, a rope swing, a zip line, and a matted area at the bottom of a rock wall, to name a few things. I don't know if HD had a favorite because he loved them all. He especially loved the zip line though. At the end of it, he would let go and crash into the ball pit.
He also enjoyed taking a scooter down a ramp. Crashing through a tower of blocks and then hitting the padded wall at the end was often a highlight for him. He loves crashing into things and throwing himself on the ground. I didn't understand it, but he loved it.

Perry has been leary about occupational therapy for HD. By the time HD started his sessions, Perry was already living in Portland so he wasn't able to see first hand what HD was doing. Ask HD what he did at therapy and he'll tell you he played the whole time. But that's what OT's do - they do work through play. Playing IS work for kids after all! I can see his hesitations though.

Monday, June 26, 2017

I Hated My Child Because I Didn't Understand Him

Those four words are the worst thing a parent can say or think about their child. I hated myself for saying them to Perry, and I hated myself for even allowing them to be thought. I loved him endlessly, but there were times when he made it really hard. I thought he was being a defiant little jerk all the time, but I was just missing the biggest part of the picture. I didn't understand him.

I had spoken with his doctor numerous time about the possibility of him having ADHD. In my head it made sense. He was always on the go. Sitting still was oh-so hard. Perry has a hard time just sitting too. He always has to be doing something or twiddling with something. The two of them are peas in a pod in that sense. HD was impulsive too. He often times had no reasoning whatsoever as to why he'd do the things he did. He was always in trouble for something - he had a tendency for breaking things. Heck, he demolish a Lego brick. How does one even do that?! We often would joke that if you were to put him in an empty room, he'd still find a way to break something. He was like a tornado in every sense of the word.

HD was also so so so distractible. Our bedtime routine was always the same - go get your jammies on and brush your teeth. Those two tasks for him were impossible to complete. We were constantly battling him because, OH LOOK! A TOY! and now he forgot what he was going to do. Even sitting down to read a book had it's own challenges because there is always something more important to look at. ADHD made sense to me.

Bedtime itself was a battle too. We moved him to a toddler bed a lot sooner than we should have so his little brain wasn't fully comprehending the whole idea of "this is my bed and I lay on it to sleep." To him, suddenly his room was a playground he could access at any moment. You would think taking all the toys out of his room would help that problem, but it didn't. He could always find something to play with. We weren't naive to thinking that switching him from a crib to a bed would be easy. We just didn't think it would be so exhausting! No amount of stories would calm him down at bedtime long enough for him fall asleep. Laying with him was useless because if he did fall asleep, he'd wake up when I got out of bed. Eventually we'd just let him fall asleep wherever he chose. Often times he would fall asleep in front of his door as he was watching us through the door/floor gap.

HD is naturally a curious kid and that's why I was terrified to move him to the basement when he and JP got a little older. We lived in a split entrance home, and to get to the basement you had to walk past the front door. I had a fear that he would wake up and go outside, now that he was old enough to figure out door handles and locks. No wonder I'm a light sleeper! My fear never actually happened, but numerous times he would wake up during the wee hours of the morning and wander around the house. (You can read about one instance here.)

As his school years began, we were faced with more challenges. I've already wrote about how frustrating his first day of kindergarten was. (If you haven't read it, and want to, HERE is the link. There's more links to other school-related stories on the tabbed page.) We learned only a few days in that he needed to work on his impulse control after he jabbed a fellow classmate in the face with scissors. He was curious to see what would happen, and at no point did his little brain register, "THIS IS A BAD IDEA." Over his three years in school, he's spent many recesses indoors because of bad behavior or refusing to do his work. He was even suspended from school in 1st grade for choking a student. It breaks my heart that at this early of an age, he already dislikes school.

HD exhibited all these things that pointed directly to ADHD. He was fidgety. Even when he was sitting, he was still moving. (He is often found picking at himself. I'm pretty sure he's had at least one scab on his body since he was at least 18 months.) I imagine that's common for a lot of kids, but he seemed to take it to another level. In fact, everything I've mentioned thus far is probably pretty common for kids and their parents to experience, but I just had a feeling something about him was just not "right". Naturally I was so discouraged when I continually expressed my concerns to his doctor, and she continually reassured me he was just a boy. I had another boy, and I could tell in retrospect, HD's behaviors were not typical behaviors of a boy, even if the kids were, what she deemed "salt and pepper" kids. We had our own set of struggles with JP, but it was nothing near what we were facing with HD.

So if it wasn't ADHD what was it? I felt like I googled everything I could think of and everything pointed me right back to ADHD. That's when Robin stepped in and said, "I think he has executive functioning delays." But what did that mean?!

From what I've learned so far, executive function is a set of skills that helps you plan, control emotions, manage time, get tasks done, etc. Basically, it's the control board for your whole brain. The thing with having executive function delays, is that it often looks a lot like ADHD. No kidding, right? When HD would get mad and act out aggressively (which frankly happened a lot, poor JP) it was because he didn't know how to express his feelings and frustrations. When we sent him to get his jammies and teeth brush, his distractibility was due to his executive functions not being fully developed for his age.

One thing that had really become to concern me was his memory. He struggled desperately to re-tell stories of his life. Each night at the dinner table, we talk about our day and what we did. It was frustrating that he couldn't remember things out of the ordinary, like getting ice cream, or going to the park. Often times we would all be talking, and out of no where he would start talking about something completely off topic, and Perry and I would just look at each other with a "where did that come from?" look about us. Turns out, his brain was struggling to organize his thoughts, stuff that his executive functioning skills are in charge of.

I filled out what seemed like questionnaire after questionnaire when we first began OT and all answers pointed to executive functioning delays. Finally, after YEARS of knowing something was "wrong" with him, I finally had something to work with in October of 2016, on the brink of turning 8 years old. With HD's executive functioning skills not being as fully developed as his peers, it makes school a lot harder for him - socially and educationally. Knowing that this is part of the problem, is just the beginning of how we're learning to help him succeed.

Thursday, June 22, 2017

HD: A Struggle to Find Help

HD has always been a very active kid. He's been known as our wild child and watching him as a young kid, you could clearly see why. He kept us on our toes to say the least.  He was impulsive. Always doing things before thinking them through. Granted some of that is just kids being kids, but he never seemed to learn right from wrong.

There were so many things I wanted to do with my kids when they were younger, but I just couldn't. I've always had this fear of losing HD. Even now when he's excited about something, he tends to run off, but especially when they were younger, it was difficult task just to go to the grocery store. For example, I wanted to take them to the library, but I knew there was no way I could wrangle two busy boys to take on that task. When they were almost to the point where I might be able to take them, Ms. Gail was born and all bets were off again. I wanted to take them to the outdoor waterpark many times, but never felt comfortable enough going alone.

Facebook is notorious for making me feel like my life doesn't measure up to others. It was frustrating to see people taking their kids to the pool, going on vacations, or hiking trips. Things that seem so possible and ordinary, like grocery shopping or even going to the park, were really hard for me, not because I had three children in tow most of the time, but because I had one child who was always struggling with listening to directions and following rules.

I first started questioning his pediatrician as to whether or not he had ADHD when he was about 3 years old. Sitting still was a hard thing for him to do, and with pre-school on the horizon, I was nervous. (Don't even get me started on potty training!) He had a hard time following rules ever since he started crawling. He frequently bounced from activity to activity and keeping him focused was a huge task.

I remember when we moved him to a toddler bed in preparation of JP's arrival - those nights seemed to last forever. It took him years, literally, years, to learn to stay in his bed at night - even after we took away his nap. The kid was never tired and really struggled to be able to calm his body down enough to fall asleep. I remember countless nights crying because I was so frustrated with him. I think I spoke the words, "I hate my child" numerous times, for numerous reasons, and I hated myself for it.

Discipline has always been a struggle too. We seemed to have tried everything we could think of to try to teach him. Time-outs didn't work because he couldn't sit there long enough. It was such power struggle. It took so much time and energy to make the time-out chair work, that ultimately, I couldn't go on like that. Spanking him didn't work either. He might cry immediately when it would happen, but two minutes later he would forget that he had even gotten a spanking. Eventually, I felt like he was being spanked all the time, so I had to quit. We took toys aways (once I took all of them to the attic!) and we later opted for rewards for good behavior and nothing seemed to work. He'd get flicked on the head at the dinner table, or sent to time-out, or have a stern talking to, and it was so so so hard for him to not smile about it. He couldn't keep a straight face. Any time there was a question as to who did something, he would suck his cheeks in in an attempt not to smile. He really struggled to understand the difference between right and wrong, funny and not funny.

Being social with him is hard a well. Having visitors at the house always turned out bad. As soon as someone other than Perry or myself would walk through our door, he would immediately start bouncing off the walls in excitement. That would get his brother excited too and the two of them together is just plain chaos. They tend to rough house a lot when they're excited, and then inevitably JP would get hurt and things would continue downhill from there. Going places were equally as exciting. And then the pushing and shoving would begin because of the excitement... and downhill it would go. I'll get into his social life more later though...

Every year at the doctor, I continued present her with problems we were seeing with him at home, and the short answer was always, "He's a boy, he'll grow out of it." By the time he was 7, he had still not "grown out of it." Kindergarten was a struggle for us. But in 1st grade when he choked a kid at recess, I just had a gut feeling, he wasn't "just a boy" and that there was something else going on. At his 7-year check up, I presented his doctor a list of problems. It was a looong list. At this point, my sister Robin, was attending graduate school in the field of occupational therapy, and thought that HD could really benefit some OT. But you can't just go to OT, you have to have a referral. I was heartbroken and so discouraged after his appointment, when instead of getting a referral, we were recommended to get him into swimming or taekwondo because "these kind of kids" just need more structure. I don't know if discouraged is even the right word. I felt defeated. I had no idea what was causing my kid to behave the way he was.

I had just vented to my Bible study group about the struggles I was having him. I went into the appointment feeling pretty good, like I was going to start getting answers. They told me things to ask about and offered up their own advice. One suggested getting him in to see a neuropsychologist, and her husband could help with a referral, but I didn't believe what ever was wrong with him, was going to need a brain scan done to offer up solutions. I felt like that should be more of a last resort thing. I felt broken inside reporting back to them the next week that his doctor didn't think anything was wrong. So. Many. Tears.

I gave up on finding answers for him for a while. I felt stuck. I felt like a terrible parent because I had no idea how to parent him, whatsoever. Nothing was working. I'm not sure when exactly my breaking point was with HD, but at some point during the summer between 1st grade and 2nd second grade, I broke. I'm sure I called, or texted, Robin in tears about my frustrations with him, for the hundredth time. By this point, she was working in Missoula at the hospital, so she called his doctor to see if she would write a referral to OT for him. Turns out she was on vacation, the doctor on call signed off on one. Unfortunately, because Robin was working the hospital, his referral had to be sent out and then he was put on a waiting list in August. (Hearing that news was also hard to hear with the August I was having.)

Just as we got confirmation that yes, Perry did get the job in Portland, we got a call from the therapy office that they had a space open for him. Even though the therapist knew we'd only be around for another few months, we opted to get the ball rolling for OT anyways. HD was SO SO SO excited about it too!

I've been meaning to update as OT has progressed but it just hasn't happened yet. It's such a big story to explain, and I want to do it justice. Over the next, probably several weeks, (or maybe even the course of the summer) I'm planning on periodically updating my blog here and there with more insight about what exactly is going on with him, how we're handling it as parents, and the progress  he's been making. The change I've seen in him over the last several months is HUGE and it's exciting but the journey to get to this point has been anything but easy.

Wednesday, June 21, 2017

ITP and Me - My Health Update

Last Monday, Perry took the day off work so he would be free to get the kids off the bus while I went to my follow-up doctors appointment regarding my low platelet counts. The quick answer, is that I have an answer, but not a complete one.

Before my appointment began, I had another blood redraw to see what my platelet count was currently. That whole process takes only a few minutes, so I had ample time to sit around and wait as my doctor was running late.

Got platelets?  (I.T.P Awareness)At the appointment, my count dropped 3 units to 66 units. Though it is still much lower than the minimum of 140, it has seemed to stabilize, which is better than it roller coaster-ing I suppose. Receiving all the results from all the samples they drew took some time. Some were sent to Seattle, and some to Oregon State University.

She went through all the positive things first. I don't have a vitamin or iron deficiency, nor do I carry the gene for rheumatoid arthritis. That was relieving to hear, as it does run in the family on my dad's side. I did, however, test positive when they tested for lupus.

Some Auto-immune disease humor for you, though quite frankly, there is nothing funny about being a sufferer.For those who aren't aware what lupus is, it's an immune disorder. Normally our bodies create protein, called antibodies, to protect us from bacteria, germs, and viruses. In people with lupus, the immune system can't tell the difference between the invaders and the body's healthy tissue, resulting in autoantibodies that attack and destroy healthy tissue. It can attack skin, joints, and/or organs.

Even though the test came up positive, it is not definitively clear whether or not I have it. More tests from a rheumatologist are going to be needed to confirm it's existence in my body. She said it could be from a difference immune disorder instead, and then rambled off a few. The only one I can remember is malaise. While I don't know much about malaise, I have read that it can be associated with depression and fatigue. I'll go in for more testing right before my trip with the kids to Montana.

The last report she pulled up was from a lab from Oregon State University that confirmed I do have an immune disorder - immune thrombocytopenia, abbreviated as ITP. To put it simply, my body is getting rid of my blood platelets too soon, so my bone marrow is working in overdrive trying to keep up a supply of platelets. Without platelets, my blood has a harder time clotting.

What does ITP look like for me?

Let's see... the big one is that I bruise easily. Really easily. My legs are constantly cover in bruises, most of which I don't know where they came from. While I haven't had much of a problem with it in the past, over the last month or so, my gums have started to bleed when brushing. It's more annoying than anything.
The bruises on my body tend to make me a bit self conscious. Most of the time, they are dark purple and just look terrible. The bruise on my thigh was from this past December. I went sledding with some friends, and never crashed once, but woke up the next morning to this. It took close to three weeks to heal itself. The other picture is of the back of my legs on Sunday. The bottom bruise on the right is now pink and purple. The tops of my thighs are also speckled with bruises as well. As I've said, I've always bruised easily, it's just more or less frustrating now knowing that I didn't do anything to earn that marking. 

Though my day-to-day life will continue to stay the same, I do have to be extra careful when getting sick as having bacteria, viruses, and germs in my body can cause a flare-up of my immune disorder - in this case, a drop in my platelets. Anytime I have spontaneous nose bleeds, or begin getting purple/red dots on my skin, I need to have my count re-checked incase it has dropped too low. If it drops too low, spontaneous bleeding can occur - not just having nose bleeds, but organ walls and vein/artery walls can break which could result in, well, death.

While I don't necessarily have to give it up, alcohol consumption must be done responsibly (obviously) because it can damage my bone marrow, which is responsible for making blood platelets. Other things that can do the same would be drinking things with quinine (like tonic water), or beverages with aspartame (like diet pop and low-fat/sugar free candy and pop). The hard part for me will be reducing the amount of tomatoes, garlic, onion, blueberries, and grapes I consume as they can hinder blood clotting as well.

One of these days, I'll get myself together a list of foods that I should be eating more of to help boost my platelet count, though diet isn't directly linked to ITP. Eating a well balanced diet is always beneficial though!

For now, I wait for July to come so I can chat more with the rheumatologist. Really, I just want to know why I'm so stinkin' tired. All. The. Time. Once a month for the next several months I'll return to the oncology clinic to recheck my numbers and hope they stabilize. If they continue to drop lower, we'll be talking about doing steroid injections. I'm hoping it doesn't come to that though! I'll update you when I recover from my trip to Montana :)

Tuesday, June 20, 2017

Football + Lacamas Lake Park + Father's Day

Sunday was a busy day for us! With it being Father's Day, I wanted it to be a little more relaxing for Perry instead of go-go-go. But I think it's safe to say, everyone had a fun day.
We thought JP's last football was the weekend before but they sprung another one on us. He and HD have improved SO MUCH over the course of the season.

This weekend was also HD's championship game. They had only lost their first game this season and had the best record overall. He was so so so excited for his game! And they won too! Immediately following the games, was JP's end of season football party, clear across town. He rode their with a friend so he had plenty of time to play while we watched HD's game. We planned that perfectly as then we only had to stay for half an hour :)
Last week my parents made a quick trip out to see us and on Wednesday (the only nice day they were here) I took them to Lacamas Lake Park about half an hour away from here to do some exploring.
Trying to find something my dad will enjoy is a challenge, so I opted for a little hike to see a couple waterfalls. It was so nice to get outside for the afternoon!

With that little hiking adventure under my belt, I wanted to take the boys to see the waterfalls too. After finishing a few things up at the house, we packed up and headed out for a Father's Day adventure with Perry. Because Ms. Gail and I already saw Lower Falls and Pothole Falls, we decided to hike to Woodburns Falls.

Just before we got to the falls, there was a fork in the road. We happened to pick the one to take us to the falls, but on the way back, we decided to take the other one to see if it would lead us to the top of the falls. It didn't. We hiked and hiked and hiked, and then took a dead end trail for a while and finally made it to Lower Falls. By that point, Charlotte had slipped a few times and was a muddy mess, and her little legs were getting tired. Quite frankly, mine were too, so I was able to successfully lead us back to the beginning of the trails. Without Perry though, I'd have been lost out there. My sense of direction in the woods is terrible!
Just as we were pulling back into town, all three kiddos passed out in car. I suspected Ms. Gail would, with the possibility of JP too as he was getting pretty sluggish towards the end, but was surprised to see HD conked out too! I had dinner planned for the night, but with our hike taking longer than expected we grabbed some food to go and had a little picnic in the front yard.

Monday, June 5, 2017

Here's to Hoping For Answers Soon

Moving was really hard on me, physically and emotionally. When is moving easy though? After 5 solid months here, I'm starting to at least feel settled, though I don't quite feel like I'm home. Maybe when I stop feeling like the new kid on the block, I'll start feeling like this is my home. Time will tell, but I'm still ready to move back "home." I broke down crying to Perry last week about just wanting to go home. I miss my people there!

Earlier this year, I touched on my anxiety in this post. I haven't had many anxiety attacks, but almost daily for several months I started to have, what I would call, mini attacks. For no reason what so ever, my heart would start racing. It's such an uncomfortable feeling! I was never able to pinpoint it to a trigger, but multiple times a day it would feel like my heart was going to beat out of my chest, and then after about a minute it would go back to normal. Always at random times too - waking up from a nap, vacuuming, doing laundry, talking to a neighbor, grocery shopping...

With Ms. Gail's birthday on the horizon, Grandma decided she'd come out for her birthday party and then take her to Seattle to have girl time with Ms. Gail's aunt and her little cousin. Knowing she'd be gone for a couple days, I took the opportunity to schedule a dentist appointment, and a physical at the doctor's office, since I hadn't had one since Ms. Gail was born. In order to have that done though, I had to go in for an establishing patient appointment first, so Ms. Gail came along to that one. (I figured it'd be so much easier and a lot less confusing and scarring for her to come with to that one than a physical...)

While at the appointment in early May, I spoke with my new doctor about my anxiety and lack of sleep. I feel tired all the time. She was thinking that my anxiety might be coming from lack of the good sleep. Though I "sleep" for around 8 hours every time, I would wake up almost at the same time every night and then toss and turn for the rest of the night. No pillows, or sheets, or room temperature seemed to change any of my sleeping habits. She ordered a few blood tests to rule out thyroid problems and such, and started me on some meds to help with sleep.

I think anytime you start new meds, there is an adjustment period. The pharmacist basically said you'll probably just get dry mouth as most of the possible side effects listed are more common in the higher doses. The first day on them was a little rough. I felt nauseous, weak, and I was having a hard time getting words to come out of my mouth correctly. That was really frustrating for me - flipping words around or just slaughtering words altogether. I wasn't seeing a huge difference in my sleep after a few days though, so I jotted it down on my list of more things to talk to the doctor about when I go back in two weeks.

Later that week though, my blood tests came back. Everything was normal except for my platelet count. The nurse explained the range for a normal amount of platelets starts at 140. Mine were at 83 so the doctor wanted me to come back in a few days for a re-draw. The next week roles around and I bring Ms. Gail back with me for another sampling. After the technician drew another sample, I held the cotton swab over my vein while he labeled the tube and such. Some alarm should have went off in my head when he checked it and it didn't immediately clot. It finally did, but by the time I got to the car, I noticed, I had sprung a leak again. I was able to use my first aide kit in my car to redress it, and then it seemed to heal fine.

A few days later, the nurse called again, and began with, "don't panic" so I immediately panic. My platelet count had dropped to 47 in a week. Because of the significant drop, my doctor was wanting to send me to an oncology clinic to get my blood tested yet again. She was quick to alert me, "She doesn't think you have cancer, so don't be scared about the name, they have blood specialists there." Oh good. Still doesn't make me feel any better. The nurse from the oncology clinic called me the next morning to schedule me an appointment. She was a little more clear as to why I was being sent there.

In short, my doctor is thinking I might have idiopathic thrombocytopenia purpura, ITP for short. To sum it up, it's an immune disorder that can lead to easy or excessive bruising due to the low levels of platelets. (I've been an easy bruiser for quite some time now. It's to the point where Perry will bump me and then joke, "Oh you're going to have a bruise there now." I never thought much of it though.) When your platelet count drops into the 30s, you have severely low platelets and it's at that level that spontaneous bleeding could occur internally. She strongly cautioned me to lay low over the weekend, no strenuous activities that could cause bumps and bruising, and NO SHAVING because you could knick yourself and have problems with it clotting. Ohh yay... Aside from that over load of news, it was Ms. Gail's birthday weekend so I was already on edge about getting her cake done, but then I was starting to get anxious about my upcoming appointment at the oncology clinic, plus my meds were making me irritable. Such a wonderful combination when I have guests... Just kidding. Things got pretty tense here.

Once Ms. Gail had left for her little vacation, I headed across town for my re-draw. I was told I'd have an appointment with another doctor shortly after to go over the results, but their machines were down so the samples had to be sent out. They were able to at least get a few results back from the 12 or so test tubes they took. In short, my count went up a few notches to 69. Still way lower than it should be though. We briefly discussed treatment for ITP after ruling out other possible reasons for the low counts. We'll discuss it more next week at my follow-up, but possible treatments would be weekly steroid injections to get my numbers up and then taper them off after a few months, or there's the option of doing an immune globulin injection which is a two day hospitalized procedure. Once the other results get back, we should know more about what exactly is going on. Is it an immune disorder? Is it a vitamin deficiency? Do I just naturally have low platelets? We shall see soon...

At the beginning of May I had gotten a cheap version of a FitBit to help me track my sleeping patterns, but mostly to check my heart rate. Anytime it was racing, I was able to look at my wrist and see - is it racing, or is it in my head. I was constantly checking it for about a week. And then all my anxiety symptoms seems to immediately stop. My anxiety started in August. You know what I learned in August? That my mom had cancer. You know when she was done with treatments? The same time my anxiety stopped.

Early in the school year, I had a little chat with HD's teacher, as she just happened to call me at the wrong time so I broke into tears over nothing, so I had to apologize an explain what was happening in my home life so she could be aware of it for HD's sake. Anyways, her mom also had cancer several years ago, and looking back on it, she remembered nothing of it - not helping her with the day to day stuff that she was too tired to do, taking her chemo, or fixing her food. She completely blocked out everything going on with her mom, and can only recall how stressful and hard it was on her, not her mom. For whatever reason, that's always stuck with me too. It's never easy watching someone we love and care about go through difficult things, but I have to wonder if that's where my anxiety came from...Timing is quite a coincidence though!

Fort Stevens State Park in Oregon

Oh my goodness! I have been waiting and waiting for this day since before we moved! It finally happened so I now I can cross it off my imaginary bucket list - WE WENT TO THE OCEAN! There had been plans of going earlier this year, but Perry decided he wanted our first time going to the ocean to be nicer out so our March plans got kaboshed.
It was presumably supposed to be a hot hot hot day at home reaching about 90* and my weather app said it was supposed to have a high of 76* in Astoria, so we made an impromptu road trip last Saturday and headed west. We all planned for warmer weather and didn't think twice about re-checking the forecast before leaving or evening bringing a jacket. It's no surprise that when we were pulling into town, our hopes of a nice warm day on the beach began to diminish as the car thermostat kept dropping and dropped all the way to the 50s. I was not impressed as I had worn shorts and a tank top. Did I mention it was pretty breezy? Do you know how much I don't like wind of any speed?
When we made a quick stop for the bathroom because someone just couldn't hold it any longer...*cough cough Perry* the kids were in awe of all the sea lions and the big ship in the harbor. It didn't take HD long to start honking with the sea lions... Once we packed back in the car, we drove around Astoria for a little bit, trying to figure out where the best place to go would be to see the ocean. We ended up driving past Warrenton to Fort Stevens State Park. It was perfect!
We practically had the entire beach to ourselves. We figured it would be a little busy with it being Memorial Day weekend, but I guess everyone went camping instead. I wasn't going to complain! It was so so peaceful!
 The first beach we stopped at was like a graveyard for crabs. HD probably loved searching for shells and crab legs more than actually playing in the sand, but hey. Fun is fun!
 I have so many pictures of this little cutie because I just couldn't put my camera down. She's just adorable!
 She was so excited to run down to the waves...
...but every time the waves started coming back to shore, she'd run away screaming. It was annoyingly cute to watch. She refused to get her feet wet.
 The boys had no problem with wet feet wet though! I only wished it could have been just a little warmer so they could have gotten wet playing in the sand.
 They spent a lot of time racing to dig holes before the waves would cover them up.
Before we ventured on to the next spot, we had the boys gather up their collection of shells for a picture. HD was so proud of his treasures! I cannot get enough of that smile from HD. I love the squinty eyes! It gets me every time! That's his "I'm really happy" face!
 At the second beach we stopped at, just a few miles down the road, Ms. Gail was a little more adventurous with the water. There wasn't much in the way of waves so that seemed to help. She had so much fun making sand angels. Montana girl at heart!
 By the end of the afternoon, she was exhausted!

Perry and I spent a lot of time snuggling up with our blankets and towels trying to keep warm. We're babies! I was content just sitting and watching the kids play. HD and JP were fun to watch trying to jump over the little waves that did hit the shore.

The trip home seemed to go along faster than the trip going there. Coming from Montana where we're used to driving two hours to get somewhere, the trip to the coast was a breeze! The kids particularly liked driving over the bridges along the way. We're anxious to head back to the coast really soon!

Sunday, June 4, 2017

A Kittie Party on Mothers Day

Ms. Gail had been counting down to her 4th birthday pretty much since she turned 3. For her, it's been helpful to count the long length of time by reminding her who's birthdays have to come first before she have another. With every birthday marked off the calendar she quickly became more and more excited to turn 4. I'm sure, for the last 3 months, she reminded me her birthday was coming soon every day, since JP and myself already had our birthdays.

Last year she really wanted a Minnie Mouse cake, but changed her mind a couple days before hand and switched it to a Cinderella cake. Ever since, she's been a bit sad and confused why she didn't get a Minnie Mouse cake for her birthday so I was prepared to theme her cake as such this year. She pulled the switcher-roo on me again though after she typed "C-A-T" into Pinterest to look at cat pictures and stumbled upon a cat cake. And then we were done. There was no changing her mind at all. She wanted a cat cake for her birthday.

Because I'm still new to the area, and don't know many people, her party wasn't much. We did plan it for a Sunday though so her cousin and auntie could come celebrate with her. Nanny and Grandma were also able to make it to her little party, along with my Aunt who road-tripped out with my mom, and also my cousin who lives in Portland.

Aunt Bobby was going to come out for her birthday as well, but decided to come a week so she could spend a little extra time with the kids. (And because Perry and I needed a sitter!) Before Aunt Bobby left, we took Ms. Gail to a nail salon to get her toes painted. She did so good! She acted like a little princess! Because she wasn't tall enough to have to toes soak in the tub, the technician had a bit of extra time so Ms. Gail also got her finger nails paint too. She was pretty spoiled!
I spent the majority of her actual birthday working on the cake. Due to some health issues (I'm sure I'll write about them later), I was *extremely* tired, and my new medicine was making me irritable, so that was awesome... Around lunch time, JP gave her some flowers for her birthday. Last year she requested HD give her flowers, but we decided to have them alternated each year. She loved it! 
Then we brought in our present for her to open. She had been asking and asking for a kitchen, so we caved.What she didn't know, was that the box was empty because Perry had assembled it the night before. She was pretty mad when she opened the box to find it empty. Lol.  


Her kitchen came with a little play phone too so she spent the next several days calling and texting everyone, as in "I can't come to eat yet! I'm texting someone!"

We all took a break in afternoon from being cooped up in the house to go see Beauty + the Beast while it was still in theatres. I loved the cartoon version, and loved this one as well! I spent the remainder of the evening putting together all the kitties for her cake and probably stayed up a bit too late doing it too!

The kitties are a little hard to see, but I ended up making replicas of some of her kitties. Baby Booties and Mama Booties, of course, made the cake. She loved them all, and really enjoyed checking on their progress throughout the evening.

 In the morning between football games, I let Ms. Gail help finish up the cake by decorating it a bit more. I had added some pearls to the side of the cake the night before, but I knew having sprinkles on her cake was important for her, so I let her do the sprinkling, before my OCD kicked in. She also took great pride in arranging the kitties on the cake. When all the kitties were where they needed to be, she looked at it and exclaimed, "Oh wow! It's like a cat party on my cake!"
Seriously, how is she FOUR already?!
We're now 3 weeks into being a four-year old and she's already planning her next birthday and insisted we put up her birthday count-down in the kitchen... I keep reminding her, let's be four for a while before we start thinking about being five, shall we?