Hosptial trip #what??..

Well for those of you who don’t know, Riley is back in the PICU. We brought him into the hospital Monday morning after a weekend of congestion and feeling crummy. By Sunday night it was getting hard to keep his oxygen levels in normal range without extra support. After being admitted to the peds floor, he got moved down to the PICU Tuesday evening because of how much he was coughing and struggling on all his gunk. He can be monitored closer here and given more intervention when needed. This pretty much came right away. He got put back on high flow oxygen almost right away after coming downstairs. After just constant coughing, hard secretion management and desating, it made the most sense to help open up his lungs and clear himself more. 

Yesterday and today are just filled with keeping him comfy, doing CPT (chest physical therapy), and letting him rest to start getting his cold out of his system. Hopefully tomorrow he’s feeling even better and we can start slowly taking away his extra oxygen support, and home sometime over the weekend. Of course we want him better at whatever cost, but also have to try and make his genetics appointment Monday! Otherwise I’m going to be begging the doctor to come and see him here, or we’ll be waiting multiple more months to get another appointment. Hate to keep having hospital trips setting him back in continuing to search for his diagnosis, and progress in PT! Fingers crossed that after this, “shorter” trip, he can manage to stay home for another good stretch and make some good progress on all counts!

However being here does have some (small) perks. We can do the whole “kill two birds with one stone” type thing and get some other medical related things accomplished. For instance, he’s lost some weight (also grown!) since starting the Ketogenic diet a month ago. Now that he’s doing well on the diet, we’re slowly adjusting his recipe and daily amount of calories (more calories usually brings putting more carbs/etc in play that you want to avoid). We’ll do this slowly to make sure his body tolerates the changes, but the first bump up happened yesterday. Also we’re getting closer to finding a good balance on helping the side affect of constipation, something I’m sure everyone wants to know, but it sure makes Riley happy! We’ve also gotten a chance to follow up with Vlcek since his apnec seizures and starting the diet. He, and everyone else, is thrilled to hear how big of a change it’s made so far in his seizure activity. Not counting the first week or two on the diet, we’ve only seen one definitive seizure since, the one over Easter weekend. And for him being sick and vulnerable to that right now, and continuing to not see any while he’s feeling like this, is huge. KNOCK ON WOOD. Trying to see if we can swing getting his g-tube changed out as well and avoid an office visit next week, we’ll see on that one. 

When we do go home, we’ll go home with a home care sick plan that all of Riley’s doctors have agreed on and are in the loop with each other. This will include having an oxygen concentrator (machine that takes in room air and converts it into pure oxygen) to use when he gets a cold and can try and ride it out at home. This way we’re not burning through our emergency oxygen tanks, like we did before coming in. We will have some sort of line drawn in the sand for when doing things like that at home just aren’t going to cut it and he needs to be admitted for additional support. Plus Vlcek is writing us a referral to see a pediatric pulmonologist at Children’s. This way we have someone who is in direct control of Riley’s respiratory issues. What else can I do to be productive and proactive while here?!  Fingers crossed we’ll be going home in a few days and we continue to make progress in working towards answers and getting him healthy and making his own progress. 

Neuro appt & a cold...

The amount of additional love and support that we have been receiving over the past few weeks has absolutely blown us away. We can’t thank everyone enough for helping Riley to continue to move in a positive direction. We had our follow up appointment with Children’s neuro yesterday, and we probably went into it with higher expectations than we should have had. Came out feeling a lot like previous neuro appointments with Vlcek, not having answers or a clear direction to continue moving in. Riley’s mito results are basically considered “normal”, nothing specific was found. However his percentages on things were above what would be considered a normal range, which at the moment is just odd. Odd, because if there was a specific mito disease, those percentages would be lower than the normal. So what does higher mean? At this point, more things that just aren’t clear. So Saneto (Children’s neuro) is going to look through Riley’s book of a chart to make sure that there hasn’t already been a mito DNA panel run, and if not run that. As far as we know, it was never mentioned to us that it had been done already. He is also going to speak with a college of his about getting Riley in on a genetics research that is being done on kids under the age of 3, who have severe epilepsy. He’s pretty sure she will still take candidates, but needs to double check of course. I have a feeling I’ll be calling Saneto’s nurse by the end of next week to push buttons on both of these things if we haven’t heard about them one way or the other. 

Next step, his hour and forty-five minute long genetics appointment at Children’s next Monday (4/20). Not sure what to expect exactly, but have a general consensus that we’ll discuss the genetic panels that have already been run, and what the next steps should be. Our guess is that since the full gen-nome panel has been suggested by both Vlcek and Saneto, that this will be discussed as well during his appointment. Whether it’s something we need to jump on and do ASAP, or if we should wait on what Saneto’s other ideas could bring to light, etc. Either way, I think we’ll both need a beer after that appointment!! 

Riley has been doing really well physically and mentally lately though. He seems much more aware of his surroundings lately, and more interactive. He’s been doing great at, at least, attempting to move and use the little strength and muscles he has. We catch him trying to straighten his back and sit up more in his toddler chair, kicking his legs the highest we’ve ever seen, figuring out how to better hold his head up in his high chair, etc etc. His therapists have been very impressed by him lately, which make Mommy and Daddy even happier. Unfortunately, Riley now has a bad cold. Started out yesterday just a dry annoying cough, but woke up this morning really stuffed up and just exhausted from not being able to sleep very well because of it. First time being sick while on the Ketogenic diet, so it’s not like we can just give him any kind of med to help him feel better; most contain some sort of sugar/carb, that can throw the diet of whack and put him even more at risk (than just being sick) to have a seizure. So for now he’s getting Tylenol and rest, and see how he feels come Monday. At least this will be the one week where he doesn’t have any big appointments, so use it to rest and recoop! 

Thank you all again for your wonderful support. Please continue to pass Riley’s story around! Until next time….

Raising support

http://www.gofundme.com/rileyjamesroberts

Riley has officially passed his "10 days at home then UH Oh" mark. He came home from the PICU on 3/14, it's now 3/25, and he's doing well. As far as we can tell, he hasn't had anymore apnec seizures since the first few days home. Even then, it was only a few we saw and only stopped breathing for a few seconds, just barely long enough to sort of see his chest not moving, but not long enough to need to do anything about it. Besides those he's had a handful of shakey repetitive seizures, or what we assume to be, but nothing we've caught in the last week. Have been sticking to a strict timeline for his feeds, to keep the ketones up in his body, and each evening we test (through a urine soaked cotton ball in his diaper) they've been at the highest level possible for over the past week! He is pretty shaky on a more consistent basis, but those movements, as far as we know in the past, haven't registered on an EEG. And he's totally there and aware during them, so the hope is that they're more muscle related than seizure related. One more thing to keep an eye on and pay attention too though. 

Riley will have a follow up with his dietician and ANRP at the end of April and see how his body is doing with the diet and see if any changes need to be made. At that point I'm sure we will discuss when his next needed EEG might be needed, for further confirmation. Between now and then, we are currently trying to get another appointment with the neuro at Childrens to discuss his mito test results, the need for another MRI (that seems to have followed by the way side during a break at home and new issues), and genetic options. Hopefully that will be scheduled shortly for as soon as possible. He also already has his genetics appointment at Childrens scheduled for the 20th. I'm sure this will be the point of discussing doing the full gene/chromosomal panel. We can hope and push for answers by his 2nd birthday, but after a year and a half of searching for answers, not holding our breath for any of these seemingly last steps to go fast. 

Beyond the boys medical world, he's loving being home. He's started back to PT on a weekly basis, and may not be doing the big things yet, but his alertness is way better than it use to be (I'm sure lowering one of his meds helped). He's started planting his feet flat on the floor, one at a time, while laying with the knee bent. In the normal world, that's no biggie, in Riley world it's huge for his coordination and muscles. 

With upcoming genetics testing that insurance doesn't cover, and his care while searching for answers, we've started a Go Fund Me, for any generous support to go strictly towards his medical expenses and care. We've always been so humbled and appreciated by the love and support we have all received. We hope that one day in the somewhat near future, we will have answers we have been looking for to better care for and plan our little monkeys bright future.

http://www.gofundme.com/rileyjamesroberts

Fighting to find control

Apneic seizures. Let me tell you can stop you from breathing when you see your child experience them, over…and over….and over. After doing so well for many months away from the hospital, the first seizure back east was like hitting a brick wall. Basically my exact thoughts as he had a few more after arriving home, spent two nights in the hospital doing absolutely nothing of concern, and then being discharged and going home to have two more that very night, WTF. And I’m being as PC by abbreviating that. Tinkering with his meds, he seemed to get control of them, and we all started to breathe a little easier as the days went on. 10 days later (what is with him and that number?! How many days he went between PICU visits over the fall), they started, again.

("Oh no!!")

("I'm fine?! What's the big deal??")

At first it was just one random one, on a very early Tuesday morning. After that, Riley would say “What’s all the fuss about? I’m fine!” Maybe not in so many words, but we’re awesome mind readers. All seemed OK again. Until Thursday morning, one happened. Two happened a few hours later. Three happened later that afternoon. Spoke with the on call doc and made a med adjustment. Four happened in the middle of the night. Five happened early Friday morning. By that point I knew he should go into the hospital, but going through the ER for seizures (something that more than likely isn’t happening when you’re in the ER, so stuff just moves even slower), on top of his medical mountain history, wasn’t going to be my first choice. I called around to all his docs that morning, and got the consensus that they were in agreement with me, and got him an urgent admittance, and off we went (last Friday 2/27). 

("Not the hat...")

Of course admitted up on PEDS again, and he was being a little angel all over again. We were so afraid we’d just repeat what we went through less two weeks prior. Thankfully this time, docs also agreed that he should have another EEG to try and figure all this out. Friday was spent hanging out with “the hat” on, not showing anything. Then he finally had two Saturday morning, and told him he wasn’t allowed any more now that we had some recorded, got the info, stop now. Boy did his body not get that message. Total freak out mode happened just before 5pm Saturday. The seizure started, and did not stop. Multiple minutes, having to get bagged, emergency IV for an emergency antiseizure med, code called, probably the entire PEDS floor crammed in our room. All happening at the slowest pace possible while you stand back trying to get a glimpse of your child through all these people. Heart racing and tears streaming down your cheeks. I wish I could say I’ve never experienced this before, and didn’t again last week. Just “saying” it, makes my heart race now. Explaining that fear is just impossible. 

Thankfully, after the IV and med where in, he came around, what seemed like hours later. Rushed down to the PICU after that, so he could have more intense care, and all his favorite nurses. Just settling in, and another came. And another. And another. And another. And you don’t want me to repeat that however many times that kept going, because it was absolutely pointless to count. Over the span of about three and a half hours, he had an apneic seizure about every three to eight minutes, ranging anywhere from 20  to 60ish seconds each, had multiple emergency antiseizure meds, a few bolus doses of current meds, and they just wouldn’t stop. At this point, in order to stop the seizures and protect his airway, he was put on a ventilator and given a high dose of an emergency antiseizure med, through an IV, running continuously. It’s amazing how quickly you can go from “no biggie mom!”, to “Oh shit”. 

Over the next few days, he was slowly weaned down on the IV med dose, to where we got to the point of being able to safely extubate himTuesday afternoon. You can probably imagine the very coarse cries and whines he had after that. His throat was certainly sore for a while, and may very well still is. The EEG stayed on through all of this to track how things were unfolding, and stayed on after he stopped the IV med. Of course, as soon as he was completely off, you could start to see the EEG bouncing around again. He wasn’t constantly having seizures, but his hypsarrethmia was back in full swing, which means his seizures weren’t far behind. It was decided on Wednesday that after so much med tinkering, we needed to go another direction. Riley started the Ketogenic diet Thursday morning. For those of you who have no idea what in the world I’m talking about: The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet forces the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures. After being extubated, he had about one very small apneic seizure each day, for a few days. He is slowly going up to fats in full swing, but the hope is this works well for him. One good thing about trying this now, is that Riley has his tummy button, so it’s just a matter of mixing his formula correctly. We do not have to plan out super fatty meals for him, caked in butter and oil. There is the possibility that he’ll be on this for a few years, if it works, so we could get to that point some day. 

Of course, nothing is ever easy for this child. Totally forcing his body into a weird and new food routine that he has to adjust to, he’s now sick with some bug. Still waiting on all the blood work and panels to come back, nothing is ever quick in a hospital, let alone on a weekend. But he’s been battling a decent fever all weekend, with some congestion, coughing, heat rash, and on top of it, constipation. Basically he’s miserable. Getting Tylenol around the clock, and doing everything we can to keep him comfy and rested, so he can kick this as soon as possible, so he can go home and continue to rest and recharge. Of course it always depends on him, but hopefully looking at sleeping in our own beds by mid week. I never want to be overly optimistic here, because it always just ends in disappointment. Focusing on keeping him comfy right now, to allow his body to fight the crud and adjust to the diet to stay seizure free (and has been since Friday morning). 

Having a child with handfuls of medical issues and special needs, is no easy task. I’ve had so many people praise me for how strong I am and us as a family. I can tell you that all the love and support from our family, friends, and even those we don’t get a chance to talk with much, helps us significantly be able to be strong for Riley, and each other. People say things like, “I can’t imagine”, “How are you so strong”, “How are you keeping it together”. Honestly, not only do I not have a choice, in more ways than one, but I also don’t know how I wouldn’t be. This adorable little boy is the reason I do anything, he is my life. That perpetual love, fuels everything. Fuels my body to endure the sleepless nights in the hospital worrying or caring for him. Fuels my mind to make decisions, and think about really anything. Fuels my emotions to not take over when faced with those terrifying situations but to also thrive to keep everything together and moving forward. And I can also honestly say, that I could never be able to do or handle any of this without my amazing partner in crime, the best dad Riley could ask for. We’ve grown together, learned how to lean on each other, communicate through good and bad, and give as much love as possible to the greatest boy ever.  Yes, obviously by where I physically sit right now, he has way more baggage than your average toddler, but neither of us could imagine our lives without him. His smiles just make it all OK. 

Riley considered sneaking out, hiding in a bush & calling uber ;-)

(Note: the title has now become a family inside joke, a hospital stay...but not Riley's)

Staring at this blank page not knowing where to start is usually how I begin one of these, today isn’t any different. Good and bad things have happened since I expressed myself a few weeks ago. Most days have been the usual routine, and towards the end of the month we started to get ready for our much needed vacation. Right before we left, Riley had his neurology appointment at Seattle Children’s, with Dr. Saneto, to see if he had any additional ideas to throw into the mix since we’re coming down a dead end road. The appointment went fairly well, he was really easy to talk to and does think that Riley’s underlying diagnosis is either mitochondrial or genetic. There is a bigger chance of mitochondrial because there are more options there than genetic. So that’s what we are starting with. Right now we are waiting to find out if they still have enough tissue from his March muscle biopsy to run the tests. If so, we’ll have results in 6-8 weeks. If not, he’ll need to have another biopsy, hopefully sooner rather than later. We should know if he’ll need surgery again or not within 2 weeks of our appointment, which is this Friday….which means I’ll probably be calling to bug in the next few days. 

(Having fun out with Nana and GiGi)

(Getting ready to watch Super Bowl in Raleigh!)

Riley also has a pediatric geneticist appointment at Children’s in mid April, so between now and then we’ll be working on either eliminating or finding possible mitochondrial answers. We feel good that we’re at least back to the process of moving forward again, after months of looking for answers stalled with complications and hospital visits. With that news, we headed cross country the next morning for Raleigh. Besides the very unfortunate ending of the Superbowl, we had a great time being able to visit with family for the weekend, before heading to Savannah Monday morning. Riley was such the little travel trouper. He did awesome on his first plane rides, car trips, and being walked all over historic towns. Mom and Dad got to walk around Savannah with drinks in hand, bring Riley to his first Catholic church, go on a haunted ghost tour, go to an old plantation, eat yummy southern food, & shop. We then drove up to Charleston on Wednesday and spent time seeing the fort where the Civil War started (and the Atlantic ocean!), shopping, eating, touring museums & an old dungeon, and more. 

(Riley's first Catholic Church, in Savannah)

(Hanging out with dad at the fort, in Charleston)

An unfortunate complication to our trip though. We had arrived back in Raleigh after two nights in Savannah, and the next two in Charleston, Friday evening. Right after having his evening meds, and in the matter of seconds of being moved in my arms from the couch to his chair in the dining room to have a family dinner, Riley had stopped breathing. I went to set him down in his chair, and it was very noticeable that he was grey in the face and not breathing. I rushed him back to the family room, Chris right on my heels. Next thing I knew I was screaming for my aunt to call 911, my cousin started CPR, and I ran as fast as I could upstairs to grab his emergency antiseizure medicine. I don’t know how I managed to not trip going up or down the stairs moving that fast. I’m sure the whole thing lasted no longer than a few minutes, but seeing your child not breathing for that amount of time (especially not already in the hospital where you have oxygen right there and tons of professionals), I was terrified of losing him right there. Right after I gave him his antiseizure med, he slowly started to gain color back and take short shallow breaths. Within the next minute or two, I swear the whole Raleigh fire department and EMTs where in my aunt and uncle’s house. We got him stable and he experienced his second ambulance ride off to the ER.

(Visiting yet another hospital...)

I thank god that this didn’t happen while on an airplane. While visiting a southern town by ourselves without my family. While driving to or from our vacation stops. So many different ways this could have been much worse. Riley was checked out at the local ER, blood ran and determined that he wasn’t coming down with a bug, all his basic lab work looked fine, and he wasn’t dehydrated. Since he was deprived oxygen for a good chunk of time, it was safest to have him transferred to the Children’s hospital to try and determine why this happened and gets him stable further. By 3am, we were finally there and getting settled. At 5:45am, his alarms where going off, and I got up to check on him, and sure enough he was grey in the face again. I yanked the call button out of the wall (so it would continue to alarm at the nurses’ desk), and threw open the door and got everyone running. This time it seemed more apparent that it might have been a seizure. Friday evening it wasn’t obvious because the big symptom was that he just was not breathing. He wasn’t doing any obvious seizure movements like we’ve seen in the past, but his jaw had been clenched (I couldn’t get into his mouth well to clear out secretions to eliminate that as a problem for not breathing). The episode early the next morning while in the hospital, his eyes were rolled up and back, like we’ve seen in the past. He would not focus on me while calling his name, like we’ve seen in the past. In addition he wasn’t breathing for a short time, but came around on his own within a minute without any assistance. After that minute he was there and aware, until he decided that just tuckered him out and went back to sleep. 

(Passed out in my arms after being discharged)

Needless to say, now that it was Saturday morning, and our flight home was Sunday morning, we did not expect to be coming home yesterday. We expected to probably still be in the hospital as of today, if not further into the week. Thankfully, doctors had their butts in gear, especially for a weekend. He was checked out and they contacted Vlcek to determine the best course of action, and if Riley was going to be safe enough to fly home. After collaboration and consensus, with Riley seeming like he was back to his normal base line that morning, he was given a bolus (extra dose) of one of his antiseizure meds early Saturday afternoon to try and help put his body back on track, and raised that dosage of his same med, at its usual times. Even though we don’t know with 100% certainty that these two episodes were seizures, the likelihood is very high. All docs agreed that even though he’s not sick, his body has just gotten worn out from all the traveling, different schedule, less sleep, etc. So like when sick, his seizure threshold goes down, and is more likely to have one. Same goes in this case, and that’s probably how we got to this point. He came back around real fast to a normal base line, and it was decided that he was no less safe to fly home than he was to fly out to begin with, and he was discharged Saturday afternoon. 

(Reaction when touching down in Seattle!)

We were both pretty nervous flying with him so soon after this, but were happy that he was able to relax and rest for a day and night in Raleigh before doing so. We also let our flight attendants know what he had just gone through, so they would be prepared if all the sudden we were jumping up for help on the flight. But he did great, even better than flying out a week earlier. Slept 75% of the time, and has been a sleepyhead today as well. He was pretty darn happy to be home last night. Tons of smiles and giggles, helps he slept most of the day too. Going to be taking things easy in the coming days and weeks, let his body rest and recharge. He’ll be seeing Vlcek by the end of the month, and may or may not be having another biopsy surgery in that time frame as well. 

(Happy to be home last night)

We will not let another bump in Riley’s road take away from the fact that we had and enjoyed most of our much needed vacation. Yes, his ordeal was very scary and not the best ending, but we can’t all live cooped up never doing anything because something MIGHT happen. You never know if something bad will happen, or not. Especially with not having his diagnosis, things are just unknown. He could present some other random symptom next week that we could never even think of. Until we know exactly what’s going on under the surface, we will all live our lives with a positive outlook, and enjoy our time together, and the memories we make. And we certainly came home with many of those from our vacation. 

(Enjoying his family vacation!)

This is how I feel

I’ve never been very good at communication. People ask me how I’m doing and without even thinking it’s an automatic response of “OK”, “Fine”, etc. I don’t like making myself vulnerable, expressing how I’m actually doing (or feeling). Although, when responses are like “I don’t know”, sometimes I just don’t because I can’t even figure it out in my own head. Ever since I was a little girl, I’ve always put others first. I’d rather see the ones I love happy, than myself. Seeing them happy, makes me happy. It’s the same thing now being a mother. I put my child and my family first, and sometimes I don’t know how to take care of myself, process, or deal with things. Having toddler, going on 19 months, who has an undiagnosed neurological disorder, with other medical complications, doesn’t make it one bit easier. 

I thank god for this beautiful little man every day. When people tell you that they can’t remember their life before kids, believe them. I truly can’t. I have tons of wonderful memories of high school, college, becoming an adult and marrying my best friend, sure. But those little things like getting up and not having to worry about a disgusting poop that your kid has been laying in all night, being able to leave the house when you want without remembering to pack a million things that you MIGHT need while out for a total of two hours, going to the movies on a whim….yeah those are the things I do not remember. Because this amazing new love of your life has taken over, and that’s all that matters any more. That territory, and what our family has been going through on top of it, makes it hard to truly express and let people understand how you feel sometimes.

Like, I’ll fully admit I’m tying like I would write things in a journal, having the intention, and hoping to have the follow through, to publish to the blog. I’m sitting in bed while my child has his last meal of the day pumped into his stomach. He’s grunting, rolling around, and still wide awake, but has no problem hanging out in bed having his meal medically inserted through tubes into his tummy. Lord knows he misses the taste of food though (hopefully someday soon, slowly). I admit that I have a glass of whiskey sitting on my nightstand and I actually took the night off from the gym, because it has just been one of those days. Sometimes I feel like people don’t understand what it’s like to be a mom to a kid that has special needs, not even knowing the diagnoses of what makes up those needs! Comments I get from strangers ever damn time I leave the house with him, I bite my lip and just nod along, in no way feeling like I should be explaining personal things that are going on. Like how “cute he is sleeping”, when he is totally awake! Like asking how old he is and being shocked that he’s only a year and a half, and proceed into has he started walking and saying tons of words. People just don’t get that not all kids are the same, and I can’t even be like….”He has this ________.”, and they’d just get it. 

It is infuriating, stressful, exhausting, and overall worrisome when you have no idea what his future looks like, what our future looks like, how to figure out for someone to properly take care of him as I start looking to return to work, not knowing if another shoe is gonna drop and a new symptom of whatever is going to randomly appear. If whatever it is, is genetic, I HATE that they don’t consider this kind of thing “urgent”, to be able to get in to see a specialist sooner, to have insurance say “no big deal, we’ll cover this”, because whatever it is, is done, there is no changing it and more than likely no treatment. Ok, well fine…but it could certainly tell us a lot of what to expect, how to plan our lives, and how to better care for the most important thing in our lives. Sometimes, a mom just wants answers and for others to understand that days aren’t always perfect (despite the usual kid issues). You have days like today where all I want to do is break down, throw things and yell and scream at doctors to help and get their asses in line. But then the cure for days like that, are many snuggles with this little boy, kisses (or sometimes bites as he has way too many teeth coming in at once), and then a glass of whiskey in bed ranting about the crappy day. Cheers to the “normalcy” we’ve had over the past few months, the hope it continues using that down time to make PROGRESS figuring shit out, sooner rather than later.

BTW, I’m sure I’m speaking very well on a father’s thoughts and emotions as well. I don’t think I could get any luckier than this mom is, having a wonderful, strong, and supportive partner in crime at her side ;-)

Home for the Holidays

So much for a quick update in a few days…oops? Well take that I didn’t update quickly as a good sign! Means we’ve been home getting back into routines and happy normalcy. We spent Thanksgiving at home as a family, and Uncle Nicholas came over for dinner and to watch the Hawks play in San Fran. Since then it’s been days filled of work, house work, PT, laughter, Christmas shopping, and quality friends and family time. Been very nice to keep this kind of routine, with a healthy and happy boy. He’s still been doing PT once a week and making progress. He was constantly favoring rolling towards his left, but will go right now as well. He can easily roll onto his tummy (either direction), still can’t quite figure out how to get his lower arm out from under his chest though. Once he has some more upper body strength that will be a breeze. We’ve noticed on occasion, whether on his back or tummy, he’s slowly figuring out how to scoot himself backwards. Think he’s trying to take after his Uncle Brad on that one. The strength in his heavy head and neck is slowly coming back as well, slowly. He still wears his “scarf” in his car seat, which he’s grown to hate and try and pull off every time. It’s to help keep his chin out of his chest. But on occasion, he does well and proves he doesn’t need it. His head doesn’t always immediately flop when seated upright. This will take more time, but he’s working well on it. The cysts on his eyes are much much smaller, and every day he opens his olive green eyes more and more. Still may be a good month or two before they are completely gone, but compare them to this time last month, and it’s a HUGE difference!

After Riley’s last EEG shortly before Thanksgiving, he and I headed over to his neuro’s office after being discharged. As always, a love/hate relationship with that office. The good news, this EEG was MUCH better than the last (week long while in the PICU). He didn’t have any sort of seizure or spasm, and the hypsarrathemia (background abnormalities) are much less. With currently being on four different antiseizure medications, he said that it’s not surprising that there are still some, but not a lot. He’s always going to be prone to seizures, so there is a pretty good chance that he’s never going to have the perfect EEG reading either. Still on track with lowering his most recent med, to have him off of it by mid-January. Go down again in dosage this Sunday! This might be one reason we’re seeing more awareness, energy and smiles! I love it…so much. 

The frustrating news, we have pretty much hit the end of the road when it comes to diagnostic testing. This means, there is a very good chance that the underlying problem, is genetic. This is where my heart sank, because not only is finding the right answer going to be difficult, it just also adds so much more uncertainty. One year later (as of yesterday), still feel like we’ve gotten nowhere. Riley has gone from 6 months, to 18 months old, and the past year has just been one obstacle after the next, causing not much in the way of him progressing. And that’s a huge developmental time to where he, in theory, should. Sometimes it’s still hard to swallow. I see a kid around his age, or even way younger, at the grocery store, and I think, “Riley should have been doing this a long time ago”. But then he grabs my arm, like right now, and those thoughts melt away because he is one strong and stubborn kid, and will get there when he can. 

So as of now, the plan is to keep him healthy and progressing well for the next few months, and nowhere near a hospital (unless he has a scheduled doctor appointment). At the end of February, we will meet again with neuro, see what kind of progress he has made, and reassess. As of right now, the only testing that he can think of to do next, would be a full genetic/chromosomal panel, testing every gene and chromosome in his body, to give us a specific diagnosis. Problems: there is only about 60% chance of it telling us what’s going on. We could go through the time and money, for a 40% chance of getting nothing. Also, getting insurance to cover it. Insurance companies consider anything genetic related, an optional test, we choose to do it, it’s not necessary. Well we’re not going through this for shits and giggles, we have a true necessity. We would like to know what Riley’s future may look like, what he may need assistance with now or in the future, things that will impact his and our lives. Not to mention, the % of chance of how it could affect a sibling, if/when we get to that point. So at this point, we have no idea if insurance would cover testing like this, or if it’d be out of pocket for us (looking at $15-16k). Yes, he has had two genetic panels run (epileptic and developmental delay), and both insurance has covered, after months of open claims and I’m sure back and forth for our insurance company and doctor’s office to make them cover it for medical necessity. This would be a way bigger panel though, as it would cover his whole body, so who knows how they’d make a final call on that one.

For now, we’re just focused on keeping this adorable little monkey health, happy and moving. He’s making progress in his own strides, and had many opinions on everything. Come the beginning of the year, he’ll start speech therapy as well, since the lovely summer steroids took away most of his babbling progress as well. New adventures await every week with this kid, and he’s enjoying keeping us on our toes. Happy to be spending Christmas next week traveling (for the first time I think since August!) down to Vancouver and Hood River, with both sets of grandparents, and great-grands, aunts, uncles and cousins on his daddy’s side too. Time to relax and be thankful for the strength our recent experiences have given us. Now I just need a glass of bubbly with floating berries to toast and cheers you all! Thank you so much for all the love and support this past year. Have a very Merry Christmas and a Happy New Year! Bring on a much better 2015!