Forward Steps

It has been both a really, really good week … and an overwhelming one. Kiran went back to in-person therapies at Childserve. Both days wore him out completely (and me, too). I knew that it would be important for both him and me to ease our way back into the world, for many reasons.

It’s been a year.

A big decision was made this week. After one more session next week with the beloved physical therapist he has been working with since he was just over a year old, Kiran will be taking (at least) a three month break from physical therapy. He has been working SO HARD for over four years, and hitting the walking milestone has been a huge accomplishment. She wants us to just let him walk and walk and walk – and really enjoy and understand this new mobility. And increase endurance. Other than that, the only home programming she wants us to continue is standing practice. Otherwise, we have been very firmly instructed to let him have a break.

I am beyond proud of my boy.

My logistics brain has not stopped running in circles since the day he walked last week. I am now thinking through all of the different scenarios and when it will be appropriate to take the pacer and when he will need the wheelchair – and when he needs both. Both is no easy feat. I did figure out safely transporting everything in my vehicle, because we needed both pieces of equipment for therapies yesterday, but it involves taking the wheelchair completely apart, and I can’t have anyone else in the car besides him and me.

Kiran continues to keep me on my toes. I can’t help but continue to grow, being his mama.

I am still experiencing minor disbelief that he is able to move independently with his pacer. I knew (I hoped) he would get there, but I had no idea it would happen so abruptly. So much of his progress has been in tiny steps, blurring the ability to really say “On this day, Kiran accomplished this.” But this was truly like a switch got flipped and the stars aligned, and his body and brain said “It’s go time! Let’s do this!!!” … and he hasn’t stopped being proud.

And I am pretty sure I will never stop being proud.

Now, we continue on. It’s exciting that now when I say “It’s a long road ahead, but we journey together”, I get to actually journey BESIDE my boy. He can take his own steps now, and I get to walk alongside him.

This year holds a lot for us. The challenges looming are plentiful, and I never pretend anymore to have any idea where we will be at year’s end. But I’m showing up for it. I’m here. And so is he. Working harder than ever. Moving forward, together.

Milestone

I think maybe it just hit me, because a comment I read on facebook from a former therapist of Kiran’s just made me burst into tears … my boy walked today.

He walked in his Pacer – the gait trainer that has been sitting in my den for the past several months, because we have been working with a walker and the Kidwalk (which is another style of gait trainer). I was getting ready to take the Pacer back to where it came from, but I hadn’t found the time. For the first time in over a year, his school PT came over for an in-person session, mainly to make some adjustments to the Kidwalk. She essentially said “Hey, if the Pacer is somewhere easy to get to, let’s just try it….”

And something for Kiran just…clicked.

I really believe that the independent movement Kiran experienced with the Kidwalk helped. I really believe that the timing was what it was. His PT made some adjustments to the Pacer that helped him move it forward. Placement in the driveway, right where there was a tiny downhill slope (like, really tiny) helped him get going. Once he experienced it, he kept walking! Little tiny uphill the other direction on the driveway and down the sidewalk. And in the hallway inside. All of it.

He was walking, independently, with the help of a mobility device. The independence is the biggest thing for me, as his mom. And I could tell he was so proud of himself, which just filled my heart.

My. Boy. Is. Walking.

Prior to today, the only milestone I have noted for him is the first time we heard his laugh. I have it in my “Special Days” calendar in my phone, and it repeats every year. Today, I put a second milestone in that calendar, set to remind me every year.

Today, April 7th, 2021, my boy walked.

I am in shock and in awe and so so so so SO proud of him.

Next Steps – Oncology

Kiran’s symptoms have remained stable over the past few months, so today’s visit was pretty straightforward.

The medical assistants who draw blood for labs in the oncology department are truly incredibly good at their jobs. Kiran has notoriously been a challenging poke, and I have felt, both times, the blood draw has gone smoothly. I am thankful for that. It’s nobody’s favorite thing.

Dr did a quick exam. She asked me to send photos documenting the flushing symptoms because she plans to present Kiran’s case to the adult neuroendocrine tumor team in a few weeks. I guess neuroendocrine tumors are fairly common in adults but rare in children, so she wants to make sure she isn’t missing anything. I appreciate her.

I did ask if she has any other thoughts, aside from this tumor, as to what might be going on. She really doesn’t. His symptoms aren’t really consistent with anything else, but it may just be a part of his genetic syndrome (since we don’t know much about that either – this kid just has to be rare in every area).

So. We wait on lab results and suggestions from the adult team. Depending on all of that, it might be time to plan for more imaging. Watch and wait. Wait and watch. The path we walk on the daily.

Whisper Voice

Kiran and I were reading books and singing songs and snuggling on the couch before his bedtime tonight. He was getting sleepy, and he has actually been pretty snuggly lately which hasn’t historically been the case.

He grabbed a handful of my hair, like he does – the one behavior we are consistently, constantly working on modifying – and I whispered to him “no grab, no pull – can you let go of my hair?” – and he whispered his vocalization back to me!

I continued whispering questions that would occasionally get a quiet voiced (not *quite* a whisper but his version) response, and it was truly the sweetest, cutest interaction in the world.

It was just something I never want to forget, because it filled my heart during a time my heart needs filling.

I love him so big.

Weepy Wednesday

Here’s some real talk, on a random Wednesday, almost a year into a pandemic.

I’m weepy today. I don’t know why. I have been in a funk all afternoon and on the verge of tears.

So. I did a few things to try and take care of myself.

1) I sat down and made a proposed plan of Kiran’s re-entry (and mine) into the world. It is proposed because I don’t get to make the decision alone, but I feel good about what I came up with, timeline and all. I am so ready and cautiously optimistic the numbers will stay low.

2) I sat down with Kiran and watched Daniel Tiger while snuggling. This isn’t necessarily something new – we try to make time most days at 3:30 for good ole Daniel, but sometimes I don’t stop and sit and be.

3) I texted Eric and asked him to pick up Totino’s pizza because we are watching Ghostbusters tonight. If I could have made it happen on my brother’s birthday, I would have. But it seemed I needed to stop and honor and celebrate him. So we will tonight.

I haven’t written a lot lately for many reasons, but the truth is: This has been a really difficult season for me. Many factors play into the fact that this fall/winter has been one of the most challenging times in my life. I am working toward spring in my heart and in my mind. I haven’t lost hope. One step at a time, always.

One Step at a Time

This is proving to be an important motto in our world. One step at a time. It’s one of the things Kiran and his journey have taught me: I can’t overwhelm myself with all of the future what-ifs. I have to look at the place we are currently walking on this journey, instead of ten or even two steps ahead. (One step ahead is important for planning/anxiety reducing purposes, of course, but rarely two).

We had a conference call with Kiran’s oncologist yesterday to go over the results of his labs from a few weeks ago. Only one was elevated – substance P – but she feels it fits in with his flushing symptoms and could still be indicating the presence of a neuroendocrine tumor.

Don’t google that. Just don’t. Stay on this step with me.

Substance P is also something that can get elevated due to stress/emotional levels, like…getting blood drawn for labs. But of course, he has the flushing symptom happening as well, and that does not (as far as we can tell) correlate with change in stress/emotional levels.

Neuroendocrine tumors are apparently very difficult to diagnose. They are slow-growing tumors, most often found in the intestine, though sometimes in the neck or lungs. This is why we have been waiting for imaging, because oftentimes in the early stages, the tumor/lesion can be so small that it cannot be seen in a CT scan. They take months or even years to change in size, so since Kiran’s symptoms haven’t changed in a year, nothing is urgent at this time.

Our plan is to repeat the labs in two months (from the last lab draw), sometime in March. If we are still seeing elevated substance P or any other changes to other numbers, it may be time to discuss a CT scan for Kiran. This would be a scan going from neck to pelvis, to cover any of the areas a neuroendocrine tumor may be growing.

In the meantime, we have our usual symptoms to watch out for, and I continue to document anytime I notice the unilateral flushing. It is still so bizarre to me how quickly this went from probably nothing to a possible tumor – it seems Frey’s Syndrome has been ruled out, at least by the two specialists we have been working with to get answers (neurologist, oncologist). It’s too bad. I liked that diagnosis so much better than this potential one.

One step at a time. I am aware we may still find this is just something else about Kiran we can’t quite find an explanation for – it isn’t necessarily or for sure a neuroendocrine tumor. But it might be, which is why due diligence is also the name of our game.

One step at a time, with some planning for the next step. But this step? It’s big enough to wrap my head around and accept and handle. I don’t need to take on the next one, just yet. And Kiran doesn’t need me there either. He needs me right here, walking next to him.

Tuesday Thoughts

This is the last week before my spring semester starts. Instead of taking two classes, because it wouldn’t disrupt when I can apply for grad school, I opted to drop down to just one class. I am hopeful this will allow a little more balance in my world as I continue to juggle everything Covid and life has thrown my way.

I spent a decent amount of time on the phone yesterday with a scheduler trying to coordinate some upcoming appointments for Kiran in Iowa City. I am still waiting on a callback for one particular appointment which has been surprisingly difficult to get scheduled, but most of 2021’s appointments are now on the calendar.

I was surprised that he was due for his two year follow-up with genetics. I just can’t believe it has been two years since we decided to do the whole exome sequencing. I am excited to see if any more research has been done on his rare substitution.

Today, I have spent the majority of my day swallowing down panic over an abnormal lab result that came in this morning. I have already emailed and gotten a response from his oncologist, but the response was essentially she will need to “weigh in all the other results combined” before discussing what this result may mean with us.

The waiting is always the worst for me. Try as I might, I spiral to the deepest, darkest places. It must mean the worst thing, because that’s the card life has dealt me too many times. I googled it – I always do, even though my advice is nobody should ever do this – and it actually doesn’t make sense to me that this particular lab would be elevated for Kiran. So despite the panic and the dark, I am hopeful and see some light that perhaps the oncologist has a simple, non-tumor explanation for it, especially since all the other labs so far have come back normal.

We played – but didn’t win – the billion dollar lottery jackpot. If we had, in a heartbeat, I would just be Kiran’s mom full-time. It’s a full-time job, after all. I learn that every time I have a break from school, when life just doesn’t slow down. It fills in, with my favorite part of all my jobs – mother.

A Week and A Day

I generally write about our appointment days while sitting in the car on the way home afterwards. That is why it is very weird that our appointment day was one week and one day ago, and I still have yet to write about it.

I was exhausted afterwards. Kiran was exhausted afterwards. My dad was probably even exhausted afterwards, because it can’t be easy to entertain yourself for that long when you can’t go anywhere or do anything (and aren’t allowed into the hospital to go spend time eating, which is one of his things usually).

For those who were following along on facebook and wondering how the urine collection went…not well. The bag they gave me really didn’t work well – he pretty much got pee all around it with a tiny amount actually inside it. I had to put these cotton pads in his diaper – twice – throughout the time we spent at the hospital, making our very last thing of the day delivering urine to oncology. Weird.

We had one of the best experiences getting labs drawn that we have ever had. This is one of Kiran’s least favorite things. I requested the lidocaine with the j-tip application, because this is a trick we learned a couple years ago when he first got to experience it. And they got the needle in on the first try (he’s always a tough poke!) and were able to get all of the blood they needed quickly. The worst of it was Kiran gets mad when you make him hold his arm still that long. He grimaced a little with the initial pinch of the needle going in, but he didn’t yell or cry out or sweat or anything…but he did still need a mama hug immediately after.

The oncologist essentially got caught up on what we have been seeing, and it was decided if all the labs come back normal this time, we can wait six months before coming in again. At this point, all of the lab results that have come back are normal. This is a relief and not all that surprising – his symptoms remain stable, and no new ones have popped up. Still, I like normal numbers!

We saw a new ophthalmologist to make sure we were plugged into vision services (we are) and to have an extra person to help coordinate and make a plan for the accommodations Kiran may need, especially in the classroom with kindergarten approaching. At least that is my basic understanding of why Dr. D had us meet with him. He did one vision test on Kiran and deemed him to have “usable vision”. Not normal vision but usable vision. I feel we already knew that, but it’s nice that the test showed him that – and also, it was consistent with the test results Dr D has gotten in the past with this specific test.

Next came the eye appt with Dr D that really stretched us both to our limits of patience. He did a pretty good job of actually putting his chin and forehead on the contraption so Dr D could get a quick look into his eyes, so she decided we needed to try to get some photos of his eyes and then get a better look at his refraction (I think) – both of which required him to put his chin and forehead on contraptions. He doesn’t like to do this. It is not set up well for a child as big as he is to be in a mama’s lap to do this. He doesn’t lean forward well. He is strong. And stubborn. I was sweating by the end of it. That’s not even a joke.

But we got decent results for everything the doc wanted to see, and everything is looking as we know it does for him. The only bummer that came from this appointment is we had to start dilating drops again. Kiran was born with microcoria, which is a fancy way of saying he has small pupils. When we do the dilating drops every other day, we kinda train the muscles of the eye to bring his pupils to a larger resting place. At least that is how it worked last time – maybe 2 or 3 years ago – when we had to do them for a period of time. I am crossing my fingers they will do what we want them to in the six month period before we go for our follow-up. Kiran HATES eye drops. Like, I mean, pushed me away when I tried to hug him after they gave the dilating drops at the appointment…HATES. We are doing okay with it, but he gets really stiff, tries to push me away, and shuts his eyes tight tight tight. I have only given them three times so far because of the every other day routine, but I have already learned I just have to harden my heart and get it done as quickly as possible. It’s best for everyone. Not our favorite thing but just another one of those things we have to do.

Overall, as usual, Kiran was awesome. He wore his masks (We have to change them out every half hour because they get wet) like a pro and didn’t get too frustrated with me about them. He was brave and mostly cooperative and continues to show strength I can only begin to fathom. I am so proud to be his mama, all the time – but man, he makes me proud with how he handles these appointment days.

Fierce

Fierce: adjective: showing a heartfelt and powerful intensity.

I have decided this is my word for 2021. I am going to continue to approach my life with heartfelt and powerful intensity. This means loving fiercely. This means fighting for what is right fiercely. This means protecting my son fiercely.

I see living fiercely as the opposite of living apathetically.

There are many facets of what living fiercely must look like in this year. I know what I have ahead of me in certain areas of my life, and I will have to be a fierce fighter. But I have committed and will continue to commit to underlying all of the necessary fierce fighting with a fierce love – love for my son and what is best for him overall.

I am tired. 2020 wore on me, and turning the calendar page hasn’t changed much in my world. But I will be fierce in this way, too: choosing what is worth focusing on. Heartfelt and powerful intensity takes energy, and not everything is worth that. But as far as what is? I’m showing up for it this year.