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Two Iowa City trips in five days isn’t my idea of a good time.

But. Let’s start with the good news. Because Kiran has had this flushing symptom for going on two full years now, I was able to notice a trend. Both last year and this year, the flushing is practically non-existent during the summertime. Hematology/Oncology doctor said that if this was a neuroendocrine tumor, we wouldn’t see the symptoms go away, certainly not seasonally. We should be seeing the symptoms slowly increasing or new symptoms adding on.

This is what I had hoped she would say and how I expected the appointment to go. As long as Kiran’s labs come back within normal limits (from what we’ve seen from him – a couple things have been high), we no longer have to follow up with her. We can contact her if we start seeing other symptoms or the flushing escalates, but otherwise a rare thing happened today: We took a specialist off Kiran’s team! Hurray!

Of course, we may have added one on, but hopefully only for a season. We saw GI today, and Kiran was officially diagnosed with chronic common constipation, not because of a disease (that part is good anyhow). Different from the last GI doctor we consulted, this one told us Kiran will likely need to be on a maintenance dose of some form of stool softening medication for the rest of his life. He was prescribed something different than what we tried last time, at my request. This means there is a clean-out in our future, starting tomorrow.

I am really battling myself with this. I feel like I have let him down – I have worked so hard with diet and exercise and natural remedies to get this under control – and ultimately, it didn’t work. I don’t know why this hits me so much harder than when medicine was prescribed for his heart function or eye drops are prescribed for his vision needs…why do I take this one on as a personal failure? I don’t know, but I’m trying to work through it so I can let it go.

The important thing is I recognized that despite my most valiant efforts, what we were doing wasn’t working. It wasn’t solving Kiran’s digestive issues. And it’s going to be so important to get that remedied prior to all day school. And certainly for his comfort.

Despite good news, bad news, neutral news, these days are hard. They always take it out of both of us, and likely out of our supports as well. So tonight, we snuggle, and likely go to bed early!

Unique Little Man

Long day in Iowa City yesterday, with a Genetics appt in the morning and an eye appt in the afternoon. We were lucky that we had enough time to take a break in between and sit at a nearby park for lunch.

It had been two years since we saw genetics, and I was hopeful more research would be available by now. We were told Kiran’s specific gene misspelling was one of interest, but only one more study has come available in the last two years. I haven’t taken the time to sit down and read it yet, but it is a study published in 2019 with only one participant, a male from Korea. It may or may not be the same patient that is in the study published in 2017 with five participants, three of which have Kiran’s exact misspelling.

From what the doctors said, it doesn’t seem we have any new information to help us know what might be ahead for Kiran. With this new study, that means only 3 or 4 kids worldwide, besides Kiran, are known to have this genetic condition.

So here’s something exciting. The fellow asked if we would be open to having her write up a report on Kiran to be published, since he has a unique characteristic not reported by the others with this misspelling: the congenital heart defect. His dad and I agreed, so Kiran will officially be a part of this body of research (albeit small so far)…and what excites me most is some other family, likely in another country (since we know all three known kiddos are from countries not USA), might be able to sit down with their doctor in a year or two and have NEW INFORMATION AVAILABLE.

The doctors were pleased with Kiran’s developmental progress, and we will now see them in a year’s time.

The eye appointment was long. It always is with dilating drops and now the doctor always sends us to attempt to get good pictures of Kiran’s retina and optic nerve. Dr. felt everything looked good and was excited – and thinks Kiran will do well – with his upcoming eye gaze device trial. She was seeing good attention and tracking. The bummer news is she still isn’t pleased with how small his left pupil is, so we now have to do eye drops every day for another six months (as opposed to every other day these past six months).

Kiran was a trooper, as usual, but definitely wore out. All he wanted was to snuggle with mama when we got home last night, so snuggle we did. We have a couple more big appointment days coming up, too, and I am hoping all of our updates are as uneventful as this one!

Touched Out

I haven’t been writing as much lately, and I have noticed with social media in general, I have been sugar coating our journey. Reasons exist for this that I won’t share, but it isn’t a place I like to be. I like to be as real as I can be about the good, the bad, the successes, the fallbacks, the light, the dark – and I just don’t feel like I can provide that at the moment, so I tend to not write. For those who enjoy our journey and my honesty about it – I’m sorry. The time will come when I feel I can again, and I look forward to it more than anyone.

Kiran has been struggling with something respiratory this week. He came home with it Monday morning, mild fever and all. No fever or sneezes since Monday, but he is still coughing a lot, stuffy, low energy…high neediness.

Kiran has never been someone who has required a lot in the way of physical touch. I mean – he LOVES his hugs now (and so does anyone getting them!) but as an infant, he honestly didn’t even want to be touched if he was upset. He wanted to throw his tantrum and just be left to do it. He does seek out comfort by way of physical touch more now that he’s older, but I don’t feel he’s very needy in this area.

Except when he’s not feeling well. And I have noticed it even more so this illness. He’s been pretty uncomfortable, and he really hates the coughing fits. He makes small little vocalizations that about break my heart, and even if I just leave for a few moments to use the restroom, he inevitably has a coughing fit and cries out for me. He has wanted someone with him, close, and he’s been insistent with the hugs/snuggles, not letting go.

Honestly, at this point, I am touched out. I’m overwhelmed. Thankfully, he is feeling quite a bit better today and is playing – and I’m washing germs out of all our sheets and blankets and resetting a few things. But it’s been a hard week. I’m behind where I should be with my class, one of the harder classes I’ve taken made even harder because it’s compressed into half the time.

The worry also takes it out of a person. We did consult his pediatrician on Tuesday and determined there was no reason to give him a Covid test at this point – we are simply cancelling all activities, following health guidelines, etc. With the fever going away after one day (and never being above 100.7) and no issues with breathing (which I have been watching like a hawk), it didn’t seem necessary. With his history of pneumonia, I have been watching and waiting for any downhill indications – fever returning or breathing becoming more labored – and for that reason, he has spent all week sleeping in his travel bed on the floor right next to our bed. I am hopeful tonight will be his first night back in his room since his wake-ups from coughing last night were minimal.

Self-care for me today is a shower and this blog – just writing to get it out there. I’m tired. It’s been a week.

I am thankful he’s managed this illness like a champ, and we could rest and recover at home. I am thankful I was able to slow down and provide comfort when he needed it this week. I am thankful I have learned to not completely overwhelm myself and let some things go for now – I will have to work my buns off, but I will catch up with school. This, too, shall pass. And it will be okay. Kiran can do hard things, and I can, too. As always, we journey together, and I am so beyond thankful for that.

God’s Hand

Hitting a deer on the freeway never seems like a good start to a story. Then again, most really cool stories tend to have deep valleys involved. I have decided there are bits and pieces of this story that aren’t really mine to share so publicly, so this won’t have every peak and valley and interesting tidbit – but I am sure that this is a story I will animatedly tell for many years to come. I am not always good at seeing God’s hand at work in my life, and I struggle – often – believing He is actually playing an active role. But I see it here.

And after the last week and a half I’ve had, I needed to see it.

Insurance company totaled my car, my beloved years-later-dream car. I wasn’t surprised to hear it, but I was really upset. Now we had this added stressor. When you need to play car seat musical chairs and have a vehicle that can safely transport a boy and his wheelchair, it’s not easy. The rental car was tiny. Thankfully, we only had to trek with the wheelchair once this week, because I had to take the seat off and put it in the front seat next to me, fold up the rest of the chair, AND take one wheel off to fit it in the tiny trunk space.

First peak – Insurance valued my car at a much higher price than I anticipated. Since I only had one payment left (that is a valley – sigh – one payment and I would have been done with car payments for awhile), we now had a substantial amount to put down on a new vehicle.

Eric came to me and said “What if I sell my motorcycle?” I met him with a firm “no” and many reasons, but he generally doesn’t listen to me when it comes to stuff like that. Some of this is his story, and he had reasons and had been thinking of selling for awhile (I’m still somewhat skeptical on this). A very long story short, he had a buyer at the house the next day willing to pay his asking price. There is a really touching and small world kind of story connected with this motorcycle buyer, but in an effort to preserve privacy all the way around, I will just say it revolved around another kiddo with a congenital heart defect.

At this point, pieces are falling into place. It is feeling meant to be.

And then we visit a Toyota dealership.

You see, we knew our next vehicle was going to be a (preferably new) Toyota Sienna. They are one of the top rated minivans and one of the most often modified for accessibility. We had a whole plan to work toward this that didn’t involve a deer.

In case you didn’t know, everyone’s buying a car right now and because of some chip that goes into all/most vehicles, there is a car shortage. Toyota apparently hasn’t had the chip shortage problem, but now their inventory is very low because everyone’s been buying a Toyota. The dealership literally had 9 new cars on their lot, none of them Siennas. In fact, every Sienna on the pipeline coming in was either already sold or a very expensive model that was far beyond our price range.

Our best bet? Build one. Sounds fun, right?

It would mean we would have to wait two to three months for our vehicle. Valley time.

Now, we had gone to the closest Toyota dealership first, to try and see a Sienna in person, but my amazing financial planner (Seriously, I’ll give you her info) had strongly recommended another client of hers who works in financing at the Toyota dealership in Ames. I figured it wouldn’t hurt to reach out and see if anything was different up there – and I’d rather use someone I have a connection to and is recommended if we are waiting that long anyway.

Same story. No inventory. She connected me to a salesperson she trusts up there, and he gave me a call. We talked about kinda what we were looking for – model, color, etc – and made an appointment for 9 am this morning to pre-order/build our Sienna and get that process started.

Yesterday, right before 2 pm, I get texts from both the financial person and the salesperson within two minutes of each other. And a voicemail from the salesperson. I call back.

You’re never going to believe this. This van is in my driveway right now, and I am still in shock.

I’m going to stop right here and say this: I keep thinking about how my greatest peak in this story was someone else’s valley. And I can only stop and hope and pray that their valley is leading them to the vehicle they are meant to have.

Someone had financing fall through on the same color, same model, exact Toyota Sienna we wanted.

The cypress green is apparently not a popular color – people are crazy because it was the color I fell in love with and absolutely wanted. The fact that this car came in and was that color (the salesperson said about 1 in 200 are that color) AND the less expensive model we were after….

And things just fell into place. We were able to purchase a brand new van, that we will be modifying for Kiran’s needs in the next year or two, and drive it home today. Because Kiran is with his dad, I haven’t been able to test this yet, but I am about 98% sure the wheelchair AND pacer will fit in the back without needing to take anything apart. There are so many amazing safety features and Toyota is actually big on mobility for all and will have some great options – and even financial help – when we are ready to modify. This will be our vehicle for the next 20 years or more, Lord willing.

And just like that, we have exactly what we need and much sooner than we planned.

And just like that, I am reminded if something is meant to happen, it is going to happen. And the valleys don’t make sense a lot of the time until you see where they nudge you. The path always seems to open up in life – granted, it is far too often a path full of fallen branches and thorns and difficult terrain that will leave bruises and scars – but that path also leads to places where the sun breaks through and the water sparkles.

I’m going to keep on with the journey, and I’m thankful to be doing it with those who are truly meant to be in my life. Today is a good day.

Dear Deer

Kiran had an appointment last Wednesday with his orthopedic doctor in Iowa City. Feet are looking good, and it was an uneventful trip …

Until it wasn’t.

My dad drove us – this is our usual routine – and on the way home, we hit a deer on the freeway.

We are all okay. I have replayed every alternative scenario in my head at least one thousand times since it occurred, and there are so many ways we could have really been not okay. Thankfully, it was an adolescent deer and the way we hit didn’t cause much jarring inside the car at all. Thankfully, my dad is an outstanding driver who was aware of our surroundings and knew it was safe to brake but not to swerve, so no other vehicles were involved in the collision. He was also able to expertly guide the car to the side of the freeway before the engine gave out.

I am beyond thankful that we are all okay. I am thankful we were able to be safely rescued off the side of the freeway, and the car got towed back to town. I am thankful I have good insurance.

I am so bad at allowing myself to be upset, though. And I’m trying to remind myself I can both be so thankful and also so overwhelmed and bummed at a sucky situation.

My car is almost certainly totaled, according to the auto body shop. I haven’t gotten final word from my insurance company on that yet, but my guess is, with its age and mileage, they will follow the fact it hit the “total threshold” as it was put to me.

As with everything else lately, we had a solid plan in place on the timing of our next vehicle purchase. A solid financial plan that I felt comfortable with and good about. And now I have been thrown into a situation where I have to move quickly and make a decision now.

When it rains, it pours, and so many other things occurred at the end of last week that has made life just feel completely overwhelming. I am beyond tired.

But. Moving forward with a new vehicle for Kiran’s ever-developing needs isn’t such a bad thing. Now that he is using his pacer, it will be nice to have a vehicle that fits both the pacer and his wheelchair without having to take the wheelchair all the way apart. As for everything else, well, I just have to keep moving forward for Kiran.

Every decision I make, in every situation, with every person, is made with Kiran in mind. I will continue to keep his best interest at the forefront as we find a path forward.

This, too, shall pass.

But it still all sucks.

Daily Progression and Communication

This past year has been challenging. I will never, ever sugarcoat that reality or pretend otherwise. I look back, and I wonder how I am still standing.

But.

Having a front row seat this past year is something I would never trade. Not for anything. Seeing Kiran’s daily progress has been exciting. I have witnessed so many aha moments and so many tiny steps toward understanding.

He has grown in leaps and bounds with his vocabulary understanding. He was a rockstar this morning during his session with his teacher, identifying five common objects in pictures (We have been working on wheelchair, book, ball, glasses, and cup) with no prompts and on the first try…and his new picture (walker) only took one prompt before he got it! He is working on a lot more vocabulary with his SLP from Childserve, too, and is making progress identifying certain toys, animals, and articles of clothing.

And of course, the biggest, most obvious goal he achieved is independent motion in his pacer. I still can’t believe he’s walking, and I am so amazed with how well he is doing! He is starting to show signs of fatigue and frustration with it at times, but I know we will build up excitement and endurance with summer activities and practice.

Today, we had a virtual meeting with his school SLP, AAC person from the area education agency, and his Childserve SLP. We are officially moving forward attempting to get an eye gaze communication device for him to trial. This is where everything being virtual for over a year might just pay off! Everyone has noticed how much more attentive he is to the screen and how much better he is getting at shifting his attention with his gaze. This device will look similar to an ipad and has cameras that will calibrate to his eye placement and movements, and he will be able to choose a message or object by looking at it. We will start with cause and effect games – For example, by looking at this monkey, he will play the drums. His cause and effect understanding has gotten so much stronger, too, so I am optimistic about this new direction.

I am also overwhelmed. Communication has been one of the most emotional and frustrating journeys with Kiran. We are definitely seeing a lot of progress with his switches and more intentional communication – and certainly more of a desire at times to make choices and tell us what he wants – but it’s been a long time coming. And all of these different choices – the technology, the vocabulary, the system, the mounting – holy cow.

It makes me excited, though. I’m excited to learn about it as Kiran’s mom, to help him with his specific equipment and needs. I’m excited to learn about it as a grad student, as I am able to hone in on my interests as a future SLP myself. And it makes me excited to keep learning as a student clinician and as a therapist someday. I look forward to being able to help a parent down the line who feels as overwhelmed as I do about it right now. And I think I will be uniquely equipped to do so.

This whole life journey continues to take me by surprise, and I never once envisioned being anywhere near where I am right now, in any area. But despite everything that’s hard, I can honestly say this: Overall, I am happy. I am blessed beyond measure. And I wouldn’t change a thing, because I wouldn’t want to see the chain reaction that change might cause.

It’s a long road ahead, but we journey together. Here come some new adventures!

Bubble Stretch

I am down for the count today, and it is giving me a taste of how hard it’s going to be to let go. This has been a year. Covid started just months after I started taking serious steps to let go and get Kiran out into the community – and into others’ care.

Now, he has been in my care for the majority of the time for over a year. And I am having to learn to let go again. To trust others with his care.

He kept looking for me this morning, while Eric gave him his breakfast. It’s going to be an adjustment for him, too. And now, he’s on a walk with his Nana so Eric can mow, and I can continue to rest.

Similar to that newborn, brought into this world during flu/cold season, with a serious unrepaired heart defect, I am so good at placing the bubble around him. It is my strength. Protecting him comes easily to me.

But where I grow? That’s where the bubble gets stretched and expanded and eventually, popped. It’s the harder work of helping him achieve his own place in this world – his own community, friends, personhood.

And because it’s harder, I think it’s more rewarding. I know we will get back there, to a place where we are both comfortable not being physically next to one another all the time.

It’s important work. Both the protecting and the nudging. We’ve got this.

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.