Emotional Needs

They tell new parents to narrate what you're doing whenever interacting with your new baby. Even though initially, they don't understand your words, eventually they will. And this constant narration serves a couple of purposes. It helps develop vocabulary, it helps them learn what is going to happen, and this helps them learn to trust you.

Over time, as it became apparent that Cyrus is likely to remain non verbal, I kind've let this habit slide. It's just hard when you don't get any response or social engagement. And part of me thinks, I should still keep up the practice because he probably does understand more than he is able to communicate that he does, and those benefits are still the same even if they are slower to develop. But interestingly enough, whenever we had company or were just in front of others I found myself narrating constantly! Every diaper change, what we're eating, that it's time for medicine, the expressions I see on his face, etc.

But why?!

Is it just like I'm trying to look like a "good" mom in front of others? Do I feel some compulsion to impress? I mean... maybe??? I definitely wouldn't discount it completely, and yet that explanation doesn't completely resonate.

During a hospital visit, after we had decided a treatment plan, the pediatrician turned to Cyrus and explained what they were going to do to him.

I told the doctor that he didn't really need to do this. That Cyrus didn't understand.

He gave me a soft sincere smile. "That's okay. I'm going to explain it to him anyway."

I felt immensely pleased at this response because this doctor saw Cyrus, recognized him as a person with thoughts and feelings, who deserved his respect.

I realized at some later point that same week, that when I was narrating in front of others it was a way to include Cyrus in the social interaction. I was doing it because I wanted our guests to see him! It was like I wasn't doing it to explain to Cyrus what was happening, but rather a way to give him a voice - to share his experiences with others.

And it works! Others will turn to him, ask follow up questions - engage with him more than when I don't do this.

But then, why don't I do it the rest of the time? When it's just the two of us? I still want him to be seen and included.

It's almost like I'm so used to serving as Cyrus's voice, that I forget he has one of his own.

That just because he cannot articulate his thoughts and feelings, doesn't mean he doesn't have them.

I was reflecting on our bedtime routine at one point. We go through the process, I lay him down in the crib, tuck the blanket around him, and walk away. On one particular evening, he immediately objected as I started to leave with one of his five distinct sounds that I think I can interpret.

I came back, put my hand on his chest, and told him it was time to sleep and time to dream. I stayed for just a moment, and he instantly calmed.

Huh!

It's almost like all he wanted was for me to say goodnight.

It was a good reminder. Cyrus may not always be able to articulate his wants and needs. But he is still human. A human with social and emotional needs. I'm trying to get better at learning how to meet them.

What happens when you brush a curly haired child's hair.

General Update: 

The last three weeks or so have been rough for Cyrus as previously mentioned. He had a cold a while back, and since that time his sinuses have not really cleared up completely. He seems to be struggling with intermittent congestion and it sounds like so much of the nasal discharge just gets caught in his throat. Kyle and I have both been experiencing a little mucus as well, and I can't help but wonder if there's something here in this hotel that we are all reacting to.

He had three doctor's visits this week with various specialists. First, a pulmonologist who confirmed that his lungs are clear (yay!), just that his sinuses have remained clogged. He saw no sign of infection and recommended we get a suction machine to help him clear things out when he is not able to do it himself. He also concluded that Cyrus's sleep apnea has diminished so much according to his last sleep study, that he no longer needs oxygen at night!

Then we met with GI to discuss volume intolerance. They suggested that Cyrus needs more water more often, and that perhaps his current formula has too much fiber in it, which is slowing it down through his digestive track, and when we try to feed him more he gets backed up. The water should help, and we are also considering changing to a different formula. Of course, the sample the dietician sent us home with does not actually appear to be lactose free, so I've been trying to reach them about this, but haven't heard back yet. I'm happy to say though, that just with the additional water we have been able to titrate his daily food intake from 700 calories a day to about 825 without any single vomiting, or even spitting up, incidents over the last three days. Our goal is to get him in the 900-1000 calorie range. But we're going slowly (don't want to get kicked out of school again for vomiting).

And finally, we met with the surgery team to check out how well Cyrus is healing from his surgery this past July. We were also supposed to learn how to change his g-tube button, but since we accidentally ripped it out a week ago, we apparently are now considered experts that already know how to do this. They cauterized his granulated tissue for a fourth time, and with the help of some steroid cream we seem to be keeping the granulation mostly under control. They gave us some extra g-tube buttons and syringes since we don't have access to our other extra supplies that we left at home  thinking we'd only be in this hotel for a week or two. Ha! We're now starting out week six! Hopefully, we'll get to go home on October 20th.

Meanwhile, we going to get out of this space and spend the weekend with friends who like, live in houses. Maybe make some gluten free cookies that this pregnant lady has been craving for weeks!

We probably should find time for a hair cut at some point...

Up For Promotion

We are super excited to announce that Cyrus is up for a promotion this coming spring as he will transform from an only child to an older brother.

After learning we were expecting, we have had the opportunity to explore yet a new side of the medical field - this time genetic testing of an embryo! I participated in a CVS (chorionic villus sampling) procedure. This involves collecting a sample of the placenta after it is formed. The placenta shares the same DNA as the baby, so this sample can then be used to test for specific disorders or chromosomal abnormalities without as much risk to the embryo. And they use an Ultrasound to pilot their instruments, so you get to watch it all as it's being done! (I'm clearly a sucker for cool imaging techniques if my last two posts haven't already made that obvious enough!)

And a cool bonus of participating in genetic testing was we got to find out the gender a whole month earlier than most expecting mothers. Cyrus is apparently going to have a little sister! Her name will be Eliana Kylie. Like, Cyrus, Eliana refers to the sunlight and we hope she will be another source of light in our lives. She is expected to join us in March. And she apparently won the genetic game of roulette in that she is not even a carrier of his disorder even though both mom and dad are.

We are incredibly excited to be growing our family, but also a tad nervous. Cyrus has stretched us and challenged us in a multitude of ways - introducing us to a world that we didn't know existed before he came into our lives. A world that involves developing various nursing and physical therapist skills, learning lift and carry techniques of fire fighters, navigating bureaucratic mazes, and writing grant proposals every other month. He introduced us to a world of wheelchair accessibility and the amazingness of medical technology.

But he has also spoiled us in that, in between he's pretty happy and calm. He is incredibly chill, and he doesn't throw emotionally violent tantrums. Nor does he really get into anything unless we leave things on the floor where he can roll over to it and accidentally grab it or get tangled.

And now, we may end up with quite a willful and mobile child. We are very aware that for awhile we will essentially be caring for two cognitive babies at once, one of which will be way too heavy! We may need to actually learn how to child proof our apartment (if we ever get to move back into said apartment!) and learn to manage an infant or toddler's emotions! And that van, that I've been talking about for over a year that would make are lives so much easier, now feels much more like a necessity! (Not that this fact makes our insurance company any more reasonable...)

Oh, and if I want this girl to inherit Cyrus's crib, I have to figure out where he can safely sleep. There are these beautiful safe beds that are designed exactly for his needs. You can even supposedly get your medical insurance to pay for them... if you get a prescription, write a letter of medical necessity, and get recommendations from a half a dozen specialists to establish medical need of every feature of said bed... (please excuse me while I run screaming in the other direction!)

But our long term stay in this hotel has at least shown us that Cyrus can be moved into his own room and sleep okay with some precautions, though there may be a rocky transition involving sleep strikes. Perhaps we'll try to do this over a school holiday.

Cyrus's attitude towards other children has always seemed to make him more engaged and aware of the world around him. We've seen this with his cousins, play dates, and with his peers at school And I am so excited for this to be a more regular thing!

And if I'm totally honest, even though I know better than anyone that there are no guarantees, I'm also excited for the chance to raise a child that is neuro-typical and perhaps not medically complicated. I'm excited to have that totally different experience. I'm also thrilled at how I know Cyrus will touch her life, grant her the opportunity to learn a patience and compassion that I have witnessed in some of my students when they have grown up in similar environments and situations.

And of course, I don't want to put any burdens or pressures on her (especially before she is even born!), but I am also excited for there to be another person in this world who cares about him.

I'm just excited that our family is growing! And that Cyrus's medical complexities were not the death of my dream to have more children.

General Update:
To clarify our living situation, our apartment complex had to "temporarily evict" us from the premises due to an emergency plumbing project underneath the building. They are paying for us to stay in an extended living two bedroom suite. The room is nice, wheelchair accessible, and they allow for pets! We have a little kitchenette. Of course, we miss our own space, and every day we discover a thing or three that we should have brought with us.

The cats took only a few days to adjust. Honestly, Cyrus seemed to take longer. The first night he managed to fall out of the bed (we don't have a crib here) despite my pillow barricade. He didn't even cry! I was so upset. He was fine - no broken bones or obvious injuries. We pushed the bed to the corner of the room and upped our pillow barricades even further. Despite our efforts, he absolutely refused to sleep at all for our first three nights here. But since then, has finally seemed to settle and that's just his room now. We've had no incidents falling out of the bed since.

Medically for him, life continues to be an adventure. He's has now had to get his g-tube site cauterized on three separate occasions due to excessive build up of granulated tissue. (It looks gross. I will spare you).

He appeared to initially handle his bolus feeds very well, but has since developed some volume intolerance. This just means if we feed him too much, he will vomit. Vomiting is never any fun, but the other challenge is he's not allowed to head back to school for 48 hours if he has vomited! And well... he's not actually sick in this case, so this has been frustrating. I also stress constantly that he's no longer getting enough food. Any time we try to creep over 700 calories we have had issues. Whereas, for the first month after surgery he was having no problem with 1000 calories a day.

And in the last two weeks he's had a case of a ring worm rash, two colds that kept causing him to miss more school, and this past weekend he appeared to develop an eye infection requiring antibiotic drops. His delightfully happy mood that was mentioned in the last post, has unfortunately not made quite as strong an appearance in the last few weeks, but I'm excited to report we've started to see glimpses of the happy Cyrus again.

Seizures are on the rise still with 3-5 seizures per day at the moment. And we added so many new specialists to Cyrus's care team, that our doctors finally recommended us for Complex Care! This a management team, that basically communicates and coordinates between all our specialists, so that you - the lay person parent - don't have to be as good at that yourself. I think this will be a good thing!

We also have wonderful friends who have asked unexpectedly to throw us a baby shower (You know I haven't had any time to think about it at all!). I think they know how frantic the last few months have been and are eager to support us through the next few hectic ones in any small way. If you would like to support us welcoming Elli into our family this coming March, here's a link to our Baby Registry that I created for them. Amazon has added a cool feature since the last time I did this, where you can "contribute" to an item to make it much easier for many people to split the cost of a more expensive thing. Super cool!

He might be excited too... 

She's a squirmy little thing! Seventeen weeks (about 4 months).