Break

I am terrible at giving myself a break. Even when I do, I struggle with feeling guilty, especially when it comes to being Kiran’s mom. So much pressure is placed upon me for his needs, his skill progression, his happiness, his health. And I feel it, constantly.

We took the last two weeks completely off – Kiran is on school break, so I also canceled all his private therapies.

We have watched a lot of TV. We have snuggled up and read books and sang songs. We have played with toys and I only occasionally worry specifically about incorporating therapy skills practice while doing it. We still practice walking daily, but not always with the walker and not as a focused goal. Kiran has gone to bed late on more than one occasion.

Why is all of that so hard for me? Eric and I had an entire conversation last night, because I admitted I feel like a terrible mother these past few weeks. I am so worried he will have fallen behind with his skills taking these two weeks off. I have pushed ahead with the rest, because I also feel like he needed the break (and so did his mama). But I worry. I feel intense guilt. Did I mention I worry? I worry hard.

I also don’t look forward to getting back to his intense schedule next week.

Uncertainty

Being a parent to a little boy with extra needs perpetually involves making decisions you aren’t sure are the right ones. Particularly a boy like Kiran who doesn’t have a clear developmental trajectory wrapped up in a neat diagnosis. There is no way to know when his skills will plateau and how much progress he will make. For that reason, I have always felt paralyzed in moving forward with equipment for him.

I took a step a couple months ago – finally – and filled out an application to a local organization called Children at Home, in order to get a changing table that would work better for Kiran. His physical therapist encouraged me to ask for a height adjustable table, because he is able to do pivot transfers and should always maintain that skill, even if he doesn’t progress beyond that. (A pivot transfer – because I had to ask for clarification, too, would be like Kiran can stand up from his wheelchair and support some of his weight while turning around to sit down on the changing table). A height adjustable table would allow the table to go low enough for him to sit on and then could be raised to a position comfortable (and back-safe) for an adult to change him on.

These are expensive, and I had no idea if Children at Home could or would even be able to cover the full cost of something like this. But I knew it was worth a shot, and I knew I needed a different solution for Kiran soon. Getting up and down off the floor multiple times a day to change his diaper is starting to take its toll on my body, and it’s uncomfortable for Kiran to be up on his current changing table because he’s too tall for it.

When I found out the table was actually going to be covered in its entirety and had been ordered and was on its way, I had so many doubts. Did I choose the right features? Did I really need the big table at this point? Will Kiran even need this for more than just a few more years? Will he successfully potty-train at some point? Will he be able to stand during diaper changes at some point? Did I do the right thing in asking for this type of assistance?

The table was delivered today and is in Kiran’s room now – Kiran is currently clapping in his bed instead of napping because it’s been a weird schedule day. And I have to admit the relief and joy in seeing that table was huge. It sounds a bit strange because it’s weird for me to even type it – but this changing table will literally change our daily lives.

Until you are living in this world, I don’t think you realize all the pieces of equipment and the costs involved – you certainly don’t realize how little insurance (and even the waiver!) covers. Insurance would have never agreed to a height adjustable table for Kiran, because in this instance, it isn’t so much a need for Kiran that the height adjusts – it is more a caregiver’s need, and insurance doesn’t care about that. The waiver Kiran is currently on only covers home and vehicle modifications – it is possible we could have figured out how to get some sort of built in changing table covered as a home modification, but that would have been more difficult.

I am beyond thankful that organizations like Children at Home exist, and that there are people who care about caregivers and those they care for – and who care about keeping children at home where they belong if at all possible. I am thankful my back will hurt less, Kiran will feel more comfortable during diaper changes, and this is a device that will grow with him for many years.

And if he does outgrow the need for this, in one way or another, I know I will be able to pass it on to someone else who has a need. I am so thankful today.

Oncology

I am going to start with the best thing that came out of today’s appointment: Unless something comes up, we do not have to make any trips to Iowa City until mid-January. I love having breaks around the holidays.

Kiran’s lab results have been popping up on his mychart over the past couple weeks. His seratonin is elevated. Today, I learned it is not elevated to a level that is concerning and is still in a range seen in a lot of people. But the day that result came up on his chart, I, of course, went to google for more information.

And guess what? What I found out in my google sleuthing is what they are suspicious of with his flushing symptom: Neuroendocrine (or carcinoid) tumor.

But his lab results and symptoms (or lack thereof) are not concerning enough at this point to do much more than monitor. If we did imaging right now, even if he has one of these tumors, it may be too small to detect. They are very slow-growing tumors. There is a treatment for them – it’s more a chronic disease management type treatment, not chemotherapy.

…I don’t attend to those types of details until that’s the path we are on, and we aren’t there yet…

The doctor – who I really liked – also made it clear we may not find a cause for this flushing. It could be psychological or behavioral.

The plan is to monitor for now. Watch for a change in symptoms or additional symptoms. Repeat labs (with a few more added) in January and again in April. If something changes with his symptoms or his numbers, we will move forward with imaging. If six months goes by and nothing changes, but we are still seeing the flushing … we will move forward with imaging.

It is hard that we didn’t really learn anything today. It is hard knowing a tumor is even a concern. And knowing we may have to wait six months to know whether or not one is present.

It’s hard going to the eleventh floor, to oncology. Really, everything about this is hard. I prefer immediate answers. But I like that we have a plan, and I really appreciated this doctor’s thoroughness and demeanor.

This road – man – I don’t even pretend to know where it’s taking us anymore. 2020 has put some bumps and twists on our path for sure. But our people are still ours. And it all matters, this journey we take together.

MRI; Next Steps

Dr. M, Kiran’s neurologist, called this afternoon. Kiran didn’t even have a neurologist on his team until earlier this year, when we saw her for the unilateral redness symptom that is taking us on this current journey. We had seen her only once before, after Kiran received his first MRI two and a half years ago, and it was determined we didn’t need a neurologist on his already extensive medical team. I hold out hope that by the time we complete this journey, we can say the same thing. Nothing against Dr. M, of course.

The good news first: His brain MRI was stable and looked as it should. Nothing concerning compared to his baseline MRI. Some bad news: Dr. M made a mistake and failed to order the neck MRI that is important imaging as well to investigate this rare symptom. She apologized extensively. Because she was so focused in not making a mistake about the rare labs oncology had recommended (WHY is everything with this child “rare”?), she missed her mistake with the MRI order.

This is upsetting mainly because Kiran has to be sedated for an MRI. Though he always does well with anesthesia and we have no concerns, there is risk involved anytime it happens. And another trip, another appointment, another test….but it gets less upsetting as the conversation goes on.

None of the lab results are back yet. These labs had to be sent away to be processed, and they generally take 2-3 weeks for results to get back. Dr. M at this point is saying she really feels the neck MRI is necessary and important imaging, and she mentions that if the labs come back abnormal, she will reach out to oncology to see if any further tests need to be done so we can coordinate.

At this point, I speak up and ask that she confer with oncology even if the lab results are normal, because I want to make sure ANY testing ANYONE wants done to explore this symptom be done under only ONE more sedation. That is when she asks about the frequency of his symptoms.

When Kiran saw her in September, his symptoms had decreased quite a bit. I wasn’t noticing them very often at all, and I was relieved (and so was she). But, according to my notes, as of Sept. 28th, I have started seeing it more. I have 9 times recorded in the last month.

And so, her recommendation: Kiran needs to be seen in the oncology clinic.

Every time I have said or typed that in the last two hours since getting off the phone with her, I have had to blink back tears. It is not that anything is more concerning than it’s been or that I am super fearful that this could be a major issue – This entire thing, still, could absolutely just be a benign issue that he just has to live with – but something about a doctor telling you that your child should be seen in oncology….

We are doing due diligence. She kept reminding us this is a rare condition/symptom. We have to be sure we aren’t missing something important. Something more. We are going through all of this to hopefully get to peace of mind.

It’s what I keep telling myself anyway.

I got a second phone call from Dr. M several minutes after the first one. She had already consulted with the neuro-oncologist who confirmed Kiran can be added to her schedule sometime the week of Nov. 16th. She also said she will likely want to order a CT scan, so that would require sedation anyway and it can be coordinated with the neck MRI Dr. M still needs. That made me feel a little better about that situation but still – honestly – I’m annoyed by it.

Mostly, tonight, I’m just overwhelmed and emotional. This week was already feeling emotional and hard, for many reasons. I just have to hope and pray that this will all be the journey to peace of mind.

It’s a long road ahead, but we have to take one step at a time. Together.

A Graduation

Today, Kiran did graduate from something. Something that has been a part of his life since he was two months old!!!!!

No. More. Brace! Dr M was pleased with how his feet look and by this age, it is very rare for the correction to reverse, so he no longer needs to wear the brace at night to hold things in place.

This is going to make our bedtime routine so much easier. It’s one less thing for me to train caregivers on (for that great someday….), and it’s one less thing to go back and forth between houses.

A very quick, easy appointment today. Kiran didn’t mess with his mask at all, and we only went through two since we were in the hospital for less than an hour.

I’m thankful for the good news today. And the quick and easy appointment. Headed home tonight. Tomorrow, we head back this way for a Covid test, then spend the night for an early sedated MRI Friday.

This mama could use good thoughts and prayers, especially for sleep. I hardly slept last night, as the anxiety starts to creep in.

Lift us up this week. The road feels particularly long.

A Step Back – Feeding Edition

This week, there is a lot. Just a lot. This will probably be the first of many blogs over the course of the rest of the week. Some of it I knew was coming this week, and other pieces, though not surprising, were not in my calendar.

Kiran’s feeding therapist today made a professional recommendation for Kiran moving forward. She feels it is time to take a step back. Take a break. Stop feeding therapy. Not because he’s graduated out of feeding therapy – not even because he’s gained some tremendous new skill and needs time to perfect it. No. It is because, for the past two years (He has been in feeding therapy for nearly three and half years, now), he has been taking a step forward and a step back and three steps forward and two steps back and a step forward and two steps back…and – did you do the math? – ending up largely in the same place we started.

This isn’t news to me. I have written and processed so many times about the roller coaster that is feeding. It’s HARD. But it’s not a surprise. However, her timing was a bit surprising. We had been trying some things from a different angle, and I didn’t quite see it coming so soon.

So. How am I feeling about this? Honestly, the overwhelming emotion is relieved. It makes sense. Kiran is making progress slowly and steadily in every other area, and feeding has just been circular. He needs time to get stronger and progress with gross motor movement – and even some fine motor movement – before he will truly have the skills necessary to progress beyond where he is with feeding. I liked how his therapist put it: It’s just not a priority for him right now.

And he’s fed, safely and effectively, through his g-tube. He is fed in small quantities with safe food and thickened water for practice and pleasure. And honestly? I feel like he could care less. This kid is just not motivated by food. It is me that has to grieve this right now. He’s fine. And more importantly, he’s safe with what we are doing, with where he’s at with his skills.

And ultimately, even if the feeding tube is with us for the duration of his life, I’m okay. Because it means HE is here with me. How amazing to live in a time like this! Truly. I am so thankful for that darn tube. I am so thankful I can blend real food for him and put it directly into his stomach. Safely. And he can continue to grow.

It’s a long road ahead, but we journey together. The next three days, our journey takes us to Iowa City….

Censored

I haven’t been writing as frequently as I would have been. I struggle when I cannot be my full authentic self. But I can’t be, and that is part of my reality right now. I still need to process.

Kiran recently had a new diagnosis added to his chart. Frey’s syndrome. It’s rare (Is that even a surprise anymore?). Because he is almost five (what!?!), there is a concern about it popping up now. He has an MRI and bloodwork scheduled for the end of this month.

Provided the bloodwork and MRI are normal and don’t show any signs of trauma/lesions/tumors…we can just monitor symptoms. But if the symptoms – again, this is the unilateral redness we’ve been dealing with since the beginning of 2020 – persist, oncology/hematology may want a full work up with extensive imaging.

I find myself in this place so frequently, I feel. It *could* be this terrible, horrible, no-good, very-bad thing….but it’s likely not. It might just be this totally benign, uneventful, no-worries kind of thing.

It is part of the narrative that is our life. I will tell our story as long as I have breath – or dexterity.

And we will continue our journey. Together.

Unilateral Redness: A Diagnosis!

You may or may not remember our journey with a random new symptom Kiran started exhibiting in January of this year. It started with a phone call from the school nurse. Since then, with lots of documenting with pictures and circumstances, looking at every possible reason, and working our way through Kiran’s pediatrician, cardiologist, neurologist, endocrinologist….

Today, we finally saw the dermatologist and had a follow-up with his neurologist. And, after the resident asked questions and saw pictures and discussed with the dermatologist, the dermatologist came in and immediately said “I think I have a diagnosis!”

And it seems we do.

At first, I was relieved and excited to have an answer, a name, a diagnosis.

And then, I kinda realized….let’s just add to the list, right? It’s a bit overwhelming. A bit grief-inducing. And of course, with another diagnosis comes a path that must be journeyed.

Frey’s Syndrome.

It’s a rare neurological disorder. It may have to do with his underlying genetic condition, or it may have to do with nerve damage sustained near the parotid gland during one of his surgeries…or some other trauma. Though it is not a serious concern since the flushing has been happening less frequently in the past several months, we do have to have some imaging done to rule out any lesions/tumors/trauma. We will also have to do some blood work and urine analysis…so, things to look forward to.

Ultimately, since it doesn’t seem to be bothering him, and we haven’t been able to pinpoint a trigger (sometimes with Frey’s Syndrome, a specific food can trigger the reaction)…as long as imaging doesn’t have any surprises for us, it could just be a totally benign condition. Just something to live with and not worry about, unless it changes in some way.

That is the journey my brain is choosing to take tonight. The totally benign, no-need-to-worry, we-finally-have-an-answer journey.

Home Transition

“I need to hear I’m a good mom tonight.”

Two minutes later, I got a thoughtful text response. Not just a “You’re a good mom!” but an (albeit exaggerated) enthusiastic, specific response. With reasons.

This is why we make a good team.

Two weeks from yesterday, Kiran and I will be moving into our new home, the house Eric and I are buying together. We are going in as equal – but different – partners in every capacity, creatively: financially, emotionally, with an understanding of where our household upkeep strengths lie (He is good at cooking; I am good at cleaning).

A lot of fears have come up, for both of us. This is a big step, one that we are taking intentionally, after many many conversations over the last year. We are ready to be a family on a daily basis. In so many ways, we already have been, but certainly trying to do so in two separate households has its challenges.

Despite the worries, so many of our conversations in the last few weeks have brought me back to this: We are a good team. We know how to communicate well with one another. Not always. We have our fights during which we are not effective communicators. But we always come back to those topics later, when we are calm, and we are able to see where we got off track. I have never had a partner so good at taking personal responsibility, and I have no problem owning up to my many faults.

And when I just need a little boost, a little encouragement…he doesn’t roll his eyes or get frustrated with me; he doesn’t say “really?!? again!?!?”…he just responds. He just gives me the reassurance I need in that moment. Because of that, I’m not afraid to ask for it when I need it.

And so much of being Kiran’s mom is feeling like I am never enough. Like I am failing him somehow. So having someone alongside me to support me in caring for Kiran and build me up when I need it….

It will be a transition. I’ve started talking to Kiran about it, and I think he’s most excited that Pickle and Olive will be living with us (My cats, who have been living with Eric for about two and a half years now – bless his heart!).

I am excited for this. I am ready. And to have an accessible home for Kiran, especially after he weighed in at over 35 lbs at his appt Wed, is priceless. I can’t wait.