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.

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….

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.

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.

“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.

It is never what I think it is going to be. That has struck me a lot with life with Kiran. Even when I hold a lot of anxiety, it’s never about the right thing.

First, I have to say: This little boy amazes me. Four hours. FOUR hours, during which he had vitals, had an echo, had an ekg, had labs drawn, had doctors examining him … for four hours, he had a mask on his face. Well, several. I’ll have to count for sure but i think we went through 9-10. He’s such a rockstar.

Cardiology was all good news. Heart function looks great. I could get into details, but important thing is heart is stable. Dr R thinks it will be at least five years before we will need to be concerned about a valve replacement. Annual appt remains annual!

Endocrinology was all looking good too…except one possible concern that I am taking with a grain of salt until we see how this next year goes. This is where it’s never what I think it will be – I held no anxiety about this appt; I used it all up on his heart!

First of all, the nurse who did his intake at the very beginning, for whatever reason, didn’t get a height. I would usually ask about this, but I wasn’t on my A game as I had a lot on my mind going into these appts. (Gotta request K for echo, need to remember to ask Dr R about Covid vaccine, have to ask for lidocaine in the j-tip before labs are drawn….you know, the usual appt day stuff). Endo obviously wanted his height since hormones are what they look at, and the growth hormone – so growth stats – are important. So the nurse comes in, in the middle of his final appt, to get the height. It was around 11:30 at that point. We got up at 5:15 this morning and had been at the hospital since 8. Kiran was done. He didn’t want to put his head down on the table to get an accurate height, and the nurse sorta let him get away with it. I didn’t foresee that being an issue because I had no concerns about his growth, but I did make sure to let Dr K know that I don’t feel today’s height was accurate.

That is important, because his height is getting lower on the growth chart. His growth hormone lab result happened to come back during our appt, and it is within normal limits – which doesn’t necessarily mean he isn’t growth hormone deficient but is another piece of info to take into account.

I gave away the big reveal. His endocrinologist is concerned he may be growth hormone deficient. To remind you, the whole reason we see endo is preventative. Because he has a small optic nerve, that can affect pituitary gland and hormones so we want to keep an eye on them. That’s a simplified explanation. So we anticipate potential hormonal issues like this one.

Since the lab came back normal and the height is questionable, we are definitely at a wait and see place with this. What threw me a bit, too, is she said we can, if he has or develops a growth hormone deficiency, choose to treat it … or not.

In our case, we can opt to let Kiran grow according to his body’s natural ability, even if it means he is smaller than the average teen/adult. (Again – IF he has this deficiency – I hold great skepticism still). It would have no effect on how his organs develop or his body works – everything would develop proportionately – and it would make his cares more manageable in the home for the duration of his life. If we choose to treat, it’s a shot every day.

I am thankful to have this information in advance of any sort of definitive diagnosis regarding this, but I am not going to spend too much time dwelling on the decision until it’s one we actually have to make. I am glad to know we need to be watching his height chart, and I am glad to know what the process will look like to do more testing ….

But ultimately, I was just glad to be done with our long morning !!!

Kiran is sound asleep next to me, in the backseat, while I tube him his lunch. These days are not easy, but he amazes me every single time. I’m so lucky to be his caregiver, his advocate, his mama.

I don’t normally ask this, because I understand my choice to blog and share my thoughts and feelings widely opens it all up to be commented on, judged, encouraged, etc. But for this post, I don’t want any comments or reactions or anything.

My heart is heavy enough. I am writing this because I don’t want to explode. I’m not even advocating anymore – it’s too hard. It’s too heavy. I can’t carry the burden of others’ actions anymore, even though I have to live a life affected by them.

I have written many times about fear and choosing to not live in it. I am sick of people’s comments about fear when it comes to this pandemic. I am not taking the precautions I am taking out of fear – I am taking them out of deliberate, cautious, informed (medically informed, even, by the team of doctors Kiran has had his entire life) thought.

I don’t want to be doing this anymore.

I am tired of everyone arguing, and I am especially tired of everyone saying things like “You do you and I do me; no judgement; if you’re worried, stay home.”…as if their behavior doesn’t have an influence on community spread. As if there is no difference between 100 cases in Polk County in a 24 hour period and 10 cases.

I don’t want to be doing this anymore.

I am still heavily grieving the small, tiny return to normalcy…the step we were about to take in early July. Something so effing simple – Kiran was going to go back to in-person therapies at Childserve. He has four therapies a week – physical, occupational, speech, and feeding – it’s two afternoons. We have been doing them virtually, which means I have been hands-on-acting-therapist for months now. The numbers were finally low enough, steady enough, we knew more about this virus…we were going to take on that risk.

And then we started seeing the biggest numbers we’ve seen yet, and Kiran’s physician recommended that if Kiran was progressing with virtual therapies, we should continue that way to mitigate risk.

Because the spread affects our family’s ability to go out into the community. People still don’t seem to grasp that concept, and I’m tired of trying to educate. If it doesn’t directly affect you – if you’re not “living in fear” and you don’t have an immunocompromised person or person with underlying conditions that would make this virus severe/deathly – I’m just not sure you will grasp it if you haven’t already.

I don’t want to be doing this anymore.

We already live a life that is isolated in many ways. I grieve it all the time, but I have also done a damn good job of building a life for Kiran – a social life, a not-lived-in-fear life, a life out in the community – and that has been taken away. And I don’t know when it will be safe – and smart – for us to start taking steps toward that life again.

We were almost there. And it was taken away again.

It didn’t have to be this way for families like mine.

I grieve watching everyone return to normal. I admit my jealousy, my anger, my judgement – I own it all.

I don’t want to be doing this anymore.

How long will I? How long would you, if it meant protecting the person you love most in the entire world?

 

I have been thinking a lot more about bodily autonomy lately. As I have seen Kiran grow in leaps and bounds with his understanding – and even some body movement – I think it’s an important thing to be intentional about.

It has to be hard depending on others to provide mobility.

I was already really good about asking him for kisses and hugs. He doesn’t like to – or perhaps hasn’t quite figured it out yet – give kisses with his lips. But when I say “kiss, kiss” or “Can Mama have a kiss?”, he will bring his cheek to me for me to kiss it. “Big hug, big hug” is almost always something he’s happy to provide, and he is such a good hugger! But on the occasion he doesn’t wrap his arms around me, I let him have that choice. It’s important, maybe even MORE important for someone who can’t communicate to advocate for himself yet, that I strive to teach him this: His body is his.

What I have added in more recently, during diaper changes (when on the floor), I now ask him to lay back. “Can you lay down so Mama can change your diaper?” It takes him some time to process this request, but he has learned the meaning because months ago, we started a new bedtime routine. As soon as I lay him in bed, he gets up on his side and looks over his side railing. I wait patiently with his blanket and say “Let me know when you’re ready to be tucked in.” (This evolved from “Lay down so mama can tuck you in. You have to lay down.” etc) Some nights it takes a LOOOOOT of patience, but he always eventually complies. And I like that it gives him some control. So – back to diapers – this isn’t really a super negotiable thing – when it’s time to change him, it’s time. But I give him the option of voluntarily laying back, and I give him time to process the request and decide. This has been just in the last week or so, honestly (I am slow to think of these things sometimes, and I also have to consider where he’s at with his understanding and ability to control/move his body), but he is already getting it and complying most of the time. When he doesn’t, I just say “Mama has to lay you back so we can change your diaper” so he knows what’s about to happen with his body.

And I realize I need to be better about this all the time. I have always been in emotionally charged situations – at the doctor “This is what is going to happen” for instance – but I am less good about making it a part of daily life. So it’s a new and important goal of mine: Communicate MORE about what I am going to do with his body: where we are going, if I’m lifting him up or helping him walk, etc.

As hard as this has all been, this time home has been so good. For both of us.

There is a lot happening. I’m sure you’ve noticed the global and national and local (pandemic, Black Lives Matter movement, political divides, etc), but of course, there is always the personal as well.

And lately, it’s just been a lot.

I have been angry this last week. I try so hard to use my voice/text to educate and advocate and love, but I know when I am angry, that can get lost sometimes. I am trying to get myself back to a place of calm.

It is all just wearing on me, because, for my family, I am not seeing an end in sight. Not just the pandemic…the huge divide in this country…the personal life stuff that I just can’t seem to figure out how to solution effectively.

I’m. So. Tired.

Kiran continues to hang in there. He had a big week. He was able to hug Eric one time – the first time in over 90 days – before we went back to being physically distant due to catering jobs coming up that add risk. Nightly FaceTime before bed helps, but it isn’t the same, as so many who are still remaining apart from family know.

He had his first appointment since March – He and I went to the dentist on Wednesday. I had so much anxiety and dread going into this appointment for many reasons. The dentist isn’t fun for him in the best of times, only one parent was allowed to accompany him, and I have also not been out since this quarantine business started. It went so well, though. Shout out to his amazing dental office (reach out if anyone wants a recommendation for pediatric dentist office) for going above and beyond to accommodate us – and that was without me asking for any additional accommodations! They had so many protective plans in place in general, I felt safe keeping the appointment. And then they made me feel even more safe by immediately directing us to our own empty waiting room and waiting to take us back until the dental area was completely empty as well. Kiran and I were able to navigate how we need to approach the cleaning for future visits, and, though we were both hot and sweaty by the end of the appointment, Kiran got through it with all good news! He even (mostly) cooperated with his mask wearing when appropriate!

I thought maybe we would start doing some of his Childserve therapies in person in July, but now, watching the numbers go up and up and up, I’m not so sure that’s the right decision. He is so easygoing about whatever it is we are doing – although I can tell he misses the social aspects of life as-it-once-was – so I am definitely struggling in this way more than he is. Also, having to be hands-on therapist through video chat instruction – and being watched by his actual therapists all the way through – not the most fun thing ever.

I am seeing so much growth in him, actually, in most areas. (I would say feeding is the exception there, but we are also focused on some muscle exercises right now so I wouldn’t necessarily see the same kind of quantifiable progress.) I have been amazed and so very proud of him.

I guess that’s our update. Kiran is a rockstar. He has stayed healthy so far during these scary times, as has our entire household. He is taking things in stride and accepting our new-normal with far more ease than I am. I thought perhaps it would get better as the time went on … I’d find and settle into a rhythm and have more acceptance … but really, with each passing week, it’s harder and harder.

And always worth it.