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).