TL;DR - Yasmeen had a positive outcome, from a minimally invasive procedure - removal of adenoids and insertion of ear tubes. She’s on the mend and all is well.

That’s really all that matters, but somehow I’m trying to analyze the process and dissect if what she went through for this to happen will become par for the course?

Some context…

Yasmeen, like many Achon kids needs to receive MRIs somewhat regularly. Now because she’s still a toddler sitting still for the 20 odd minutes to take an MRI is nearly impossible, that means general anesthetic. On two prior occasions we’ve had to cancel MRIs at Stanford Children’s Hospital, Lucile Packard due to lack of beds. The first attempt, we were onsite at 630am, checked in and waited for an hour before they broke the news. The second time, they at least had the good sense to call before we left our house.

When we arrived onsite for her adenoid removal, we were expecting more of the same. While things went down a bit differently, they were still the same. We checked in and were taken to surgery intake, in short order. A member of neurosurgery staff also came by to consult us on the game plan for a follow appointment MRI which be dictated by the success of the surgery.

After registration we were lead to the Pre/Post Op recovery room. And we waited, then waited, and waited some more. To the tune of about 3+ hours. The staff informed us of: 1.) A general lack of beds in PICU, recovery and “floor” beds (for general stay) and 2.) a previous surgery with our ENT taking longer than expected. Frustrating but I always wonder if 1.) this is par for the course for any non-trauma, low-acuity procedure and 2.) of all the folks at the facility, who is likely in far more dire straights than my daughter. As any parent will tell you, the reflex reaction is “my child first” (at least that’s what goes through my head). But after a few breaths and a little perspective things come back into focus.

The procedure itself took no more than 45 minutes and she came out of anesthetic a little more pissed off than usual, but after a few hours mommy and daddy were able to get her settled down.

Unfortunately, I left around 7:30pm that same day to pick up our son, Cameron from Obachan’s (grandma in Japanese) house in order to get him to bed and off to school the next day. Nabila wasn’t able to get into a floor room until about 9pm that day, having spent again a few more extra hours in recovery than planned. At some point she’ll need to contribute to the post as those hours would’ve been great to as part of the story.

The next morning, they both came home.

Fast forward a few weeks (mainly because I’m lazy with posting) and her breathing is markedly improved. More consistent breathing through her nose, deeper breaths and better sleep on the CPAP (worthy of another post down the road). But one nagging thing that is just now starting to resolve…a sinus infection. Again, minor in the grand scheme, but after two rounds of antibiotics it’s just now starting to clear up. And the only big question that remains for Yasmeen: is it simply due to a long side effect with recovery from a surgery, or will her sinus issues (now sans adenoids) become improved or exacerbated with their removal.

The upshot is that she’s a much happier little girl now that just keeps keepin on. Here’s a gratuitous shot from Halloween to demonstrate (Michael Jackson - Beat It and Billie Jean)

What a short, amazing trip it’s been.

What the heck happened to “Pin-the-tail-on-the-Donkey”, three-legged races, water balloon tosses, pizza, ice cream and cake at children’s birthday parties? Now the effort has become a serious affair worthy of planners, planning and some serious resource allocation. We’re talking Billy Madison IRL. Maybe I missed the memo.

Rant over…A party is a celebration. It’s a gathering of those close to you that want to participate in what’s been given, won, acheived or accomplished. As we get older, we somehow lose sight of that and it takes a child to help us remember. Not just in their celebrations, but our own.

This lovely little girl with a personality that’s already coming through… Toothy grins, chest snuggles, constant peek-a-boos, and clapping ovations. She gives more than she receives in spades. And for that, why not an epic party?!?!

Yasmeen has been able to stave off several procedures (adnoids, eartubes, MRIs) due to myriad reasons over the past few weeks. And while she likely knows they’re coming in her own little way…

She’s still unfazed, still happy, still celebrating. And it’s for that reason alone that a big party was what this party girl needed.

Family-arizing Ourselves

Our third and final day at the conference was really about connecting families. What’s most unfortunate is that while I remember vividly meeting the Spencers, Bernals, McGanns Freys and a host of other families in between sessions what’s important for me (I think) is to start understanding how this a support network and how, over the years of raising a child with Achondroplasia, that will mean a great deal.

The most obvious manifestation of this was during the parents discussions held mid-week. When we first sat down, before introductions were even made, the first question that was posed who has the youngest child with dwarfism here? For better or worse - winner, winner - we raised our hand. And sure enough Yasmeen was indeed the youngest child represented. A lovely token of Yasmeen and our attendance was a lovely gift (the Teddy Bear has found a permanent place next to her crib)

But while the surface level question was about “who’s the youngest”, the deeper meaning was to surface how early a family and individual is able to leverage the support network that’s made available to them. The Support Network. That’s something I suppose I should already been accusted to. After all, there’s a Social Network, Professional Network and now a standard term, Care Network. But up to now, while I was familiar with term Support Network, it never has really extended beyond family. Now Family, Friends, Physicians, Conversations, Acquiantenances, Encounters, and even Facebook all exist within our Support Network. Whatever comes our way, we’ll have outlets, empathy/sympathy and advice to find our way. And Thank goodness for that Teddy Bear. It’s now a daily and tangible reminder of the Support Network.

As I strive to make this blog more meaningful to those that read it, I’ll try to find deeper meaning in my musings. To date, I’ve delivered ”just the facts” and that’s not really what writing is about, it’s about conveying a message and telling a story. It’s important to set the context for all that happens from here on out, but rest assured…

Our story is just beginning.

Settling in

After the whirlwind first evening at the conference, it was nice to get our “sea legs” coming into day two. We were able to get registered easily and connect with several California families, and share our stories.

After a quick lunch, Nabila and I decided to divide and conquer several of the medical sessions. Beyond the medical and informational sessions, it’s impressive the amount of content, activity and expertise we’ve found at the event.

It also is bringing me to a realization (that will be later confirmed): We’re spoiled in the San Francisco Bay Area, when it comes to medical expertise.

Just Breathe

The sessions I attended were on Breathing and Hearing. Both lead by a Doctor from Children’s Hospital Oakland, Dr. Richard Kerbavaz. In both sessions you got a sense of his manner and experience with patients. It was interesting to hear about the commonalities in the application of CPAP (Continuous Positive Airway Pressure) to assist in breathing and it was a consistent theme from infants all the way to adults. We’ll be starting Yasmeen on CPAP in the coming weeks. More to come on this topic.

I Hear You

In the session related to hearing, the only consistent theme I could gather was “Tubes” in that to assist in draining of fuild to ensure that fluid caused hearing loss could be prevented or at least lessened. This feedback was timely in that we’ll also be doing a hearing test with Yassie at Lucile Packard. And the fact that she’s been congested for the past month, well, we shall see…

Breaking Radio Silence

It’s been entirely too long since I’ve updated this blog. And while this comment is entirely and unequivocally overused as a cop out. I’m realizing I’ve done a great diservice to not only my family, but to the Father’s out there who may go through the same experiences.

More on this in a later post, after LPA Conference 2014, after all that’s what this post is about

Welcome!

There’s many level to that word as it relates to the LPA Conference. Bear in mind, that the only time either my wife or I have ever attended something of similar scale it was for Tech Conferences. So we were a bit overwhelmed.

When we arrived onsite, many conference attendes gave us the kind words and a smile. And shame on us for not being more forward and introducing ourselves…and asking how to find registration. Instead we tried to process and do what most people do, figure it out. This included a few flights up/down elevators and escalators (now mind you, Yasmeen still requires a stroller) from the first floor, to the fourth, to the second, back to the first. Only to discover that registration was indeed on the 4th, and that it closes at 7pm. It’s now 7:02.

Luckily while looking at the Day’s speakers agenda we bumped into Corey Spencer. His wife, Leslie writes a lovely blog - www.dreambiglittleone.com that I highly recommend. Corey gave us some quick evening pointers and we were able to attend Leslie’s talk that evening.

We also ran into a few friendly faces from www.lpabayarea.org who gave use some great advice - eat something. By now it was around 9pm and the last thing we ate was ~11:30am.

Saving the best for last, the number of friendly faces, smiles, “Hi’s” and generally open conversation we got from folks was amazing. It doesn’t hurt that Yasmeen is quite possibly the smiliest (yes that’s now a word), happiest and generally the most easy going baby around. Every one loved the kickname Yaz even though mom isn’t sold on it. And we left every conversation feeling all the better for coming down for the conference.

Granted, we’re noobs. This is in fact our first rodeo. Who knows what else to expect over the coming days. But if I could give advice to anyone on the fence for next year, as non-noobs…

Welcome!!! You are amongst friends.

Yasmeen is Born

On September 25th, 2013 our amazing daughter, Yasmeen Kumi Gyger was born. From the moment she was born we knew there was something special about her. And after now, what is almost four months later we know…Achondroplasia

What does that mean?

Reality, I don’t think has quite set in yet for us. Ultimately it means she’ll be a little person but we’re still trying to process the full implications of that.

The Road thus far

Luckily we’re in close proximity to Stanford and Lucile Packard Children’s Hospital (LPCH). It’s a great facility but I always have mixed emotions when it comes to teaching hospitals. While you can, in some instances, get world-class care providers. Other times, you get “students” and many of them, at once trying to use your child as a learning exercise. And while, I’m all for the growth and advancement of medicine, I’d like my family to contribute one care-provider at a time, and not four-at-a-go. But I digress.

The Laundry List

So far here’s a quick laundry list of the Care Providers we’ve amassed in the, oh two or so months we’ve been actively visiting LPCH:

1. Genetic Counselor - To aid, navigate and generally help us on our journey.
2. Genetic Specialist - An M.D. that specializes in Genetic Diseases & Syndromes
3. Gastrointerologist - All things Digestive since Yasmeen was vomitting and aspirating in the really early days
4. Radiologist - For X-Rays and MRI pictures
5. Anesthesiologist - Because MRIs on infants require full anesthetic
6. Occupational Therapist - Because her aspirating (swallowing down her wind pipe) needs to be rectified with proper feeding technique
7. Neurosurgeon - As there was a risk she developed either/both craniosynostosis or hydrocephalus. Luckily both were negative thanks to the MRI
8. ENT - Because her breathing, since the day she was born has been shallow and labored with constant congestion
9. Any the list goes on for as yet scheduled providers…
10. Physical Therapist - To check her spinal and extremity development
11. Sleep Specialist - to correlater her breathing with potential sleep apnea

The Road Ahead

Short answer, who knows. But we love our baby girl, we’ll find our new normal. And keep on keepin’ on. I’ll do my best to chronicle things here. And generally be more active in blogging. While I’m a published author, I’m not a blogger by any stretch, so we’ll see how this goes.

Stay tuned.

/b

Now that I’m a published author, it’s time for me to get serious about blogging. More to come from me on the book, the industry and what I’m working on. Right now I’m just trying to get Octopress set up the way I like.

Stay tuned!