Mixed Emotions

Yesterday was Cale's much anticipated doctor's appointment.

We got up incredibly early so that we could compete with the rush-hour traffic and arrive on time. Both kids were roused with sleepy eyes and looks of, "why on earth are you disturbing me from my peaceful sleep at this hour?" I, too, probably looked the same way since I tossed and turned most of the night, wondering anxiously about our meeting with the doctor. I wasn't sure what to expect and for those of you reading that have kids, you understand that your children are the most important things in your world and the possibility of receiving bad news about one of them is simply unbearable.

We arrived at Seattle Children's Hospital on time and even a bit early. The sun was shining and my attitude was surprisingly positive and eerily calm. I had no worries. We walked through the doors, checked in, and began the ongoing event of waiting. I truly believe medical offices just shuffle you around from place to place to make you feel like something is actually happening, but really they're just moving you to a different place to wait. Cale's appointment was broken up into two different parts; the first segment was a meeting with an occupational/physical therapist that basically went through a series of tests to determine where Cale was developmentally. The second segment was the actual meeting with the doctor. Cale did amazing with the OT/PT and even surprised them with how much he was able to do. Alex and I, of course, puffed out our chests with what I'm sure was a "Yep, that's our son" kind of look. We were so proud. After that was finished we were transferred to a different place where we then waited for the doctor to see us. Waiting. Waiting. And more waiting. It was during this portion of the morning that I started to become anxious. What if she came in, took one look at our son, and told us that she'd seen hundreds of kids just like him and that the future for him was bleak? What if she was able to put a name to whatever condition Cale has, because then I would be forced to spend countless of hours on the internet researching credible or non-credible information, all the while giving myself an ulcer. What then? Thankfully Riley was crying and squirming all over the place that I was forced to focus my mind on her rather than run through all of the worst-case scenarios I had been dreaming up during the weeks prior to this day.

Our name was finally called.

The doctor's appearance surprised me. She was young, very attractive, and made eye contact with us which had not been the case with the two previous neurologists we have seen. She was seemingly normal and even had a 31-week preemie herself. She was my kind of gal and I instantly liked her. She asked us hundreds of questions about Cale's history, looked him over and played with him a bit, and then gave us her opinion. Gulp. She suggested that we submit to some sort of genetic test with an incredibly long name that I definitely cannot remember. We have had genetic testing done before but apparently there is a new one that can pick up even the slightest abnormalities in the genetic code. This test is anywhere from $1300 to $3000, depending on what your insurance is willing to pay. Another gulp. She said the chances of this test finding anything is probably less than 1% and so Alex and I are currently debating on whether or not we want to do it. She also said she didn't think he had a syndrome because there weren't any physical features that stood out on Cale. We kind of already knew that but it was good to get her confirmation. The only thing any doctor has been able to "diagnose" him with is cerebral palsy and so I asked her if she thought that's what he had. She said no. Her nurse then came in, handed us some paperwork, and gave us the option of coming back in a year even though the doctor didn't think it was necessary to see us again. All of that worry and anticipation for twenty minutes. Was it worth it? I'm not sure.

In summary, she wasn't able to tell us what Cale has. She doesn't think it's cerebral palsy or any sort of syndrome but she does recommend we seek out that genetic test. She believes Cale will continue to make gains and progress forward, which really was our best-case scenario and all that we could hope for. She didn't tell us his future was bleak or give us the news that he had a condition that would limit his quality of life. Overall she was very positive and I suppose we should feel very good about that. For some reason I'm left feeling like perhaps this was a waste of our time because we are leaving knowing nothing different from what we already knew. On the other hand, we made the appointment to have a different set of eyes look at our son and get an "nth" opinion, which we got. Mission accomplished. Cale truly is unique and there's no question in my mind that God made him exactly the way he should be. I love my little boy more than words could ever describe and there's nothing any doctor could ever say to change that. We joke that there's a different time zone called "Cale's Time" and I'm truly beginning to believe that it actually exists. Everything on his time..

I'm glad it's over and perhaps one of these days I will truly be at peace with not knowing the why or the reason for why Cale is the way he is.

Seattle

We are in Seattle now and have been for the past three days. (I might have mentioned this in an earlier post but my mommy brain makes me forget things every now and then.) We are scheduled to meet with a "pediatric developmental specialist" that has been referred to us by several other parents who have children with special needs. The medical community in Missoula, albeit supportive and sympathetic, has not provided us with any answers concerning Cale's diagnosis. This is both a blessing and quite frustrating. It is a blessing because we don't have a diagnosis that gives us a future full of hardship and grief, because for now we still have hope that one day Cale could very well turn out to be "normal". On the other hand, it is frustrating because we have no way of predicting where he will be in ten, twenty, or even five years. I suppose this point is somewhat void considering no one is able to predict anything about the future, but it would provide a lot of comfort to both Alex and me if we even had a vague idea. To be honest, I haven't given this doctor appointment a lot of thought and now that we are less than 24 hours away I am getting a bit nervous. I'm nervous because this doctor might give us a diagnosis. What then? Maybe it's better not to know. Or what if she tells us that what we've been doing so far has been all wrong? I'm trying really hard not to let my mind wander but the paths of worry are pretty well traveled in my brain.

On another front, Alex's mom lives here and so that's who we've been staying with. We've had TONS of fun since we got here but I'll write more about that later. Please send a prayer our way as we seek out more answers tomorrow!

THANK YOU!

Changes

I've always viewed change as a good thing. I think change creates opportunities that we might not have discovered otherwise. Change opens doors. Change is one of the reasons why Alex and I are such a great fit; he squirms at the thought and I crave it. Together we keep one another in balance.

However, Riley is opening my eyes to change that I am less inclined to greet with open arms. She has developed an attitude that surpasses the nickname "drama queen". She's happy go-lucky one minute and then screaming at the top of her lungs the next. Cale's water cup is apparently far better than hers, therefore she feels the need to throw hers clear across the room to make it apparent to me that it is no good. I may also have the first child to attend kindergarten naked because I would rather send her off with no clothes on than wrestle her to the floor trying to get her dressed. Diapering is much of the same so I can only pray that she is potty-trained by age one. Oh, and hats - just forget about those! I also wasn't aware that the sign for not wanting to eat was flailing one's arms at mach speed in hopes to knock the spoon and all of the food on it towards the four surrounding walls. Perhaps then I might understand that she's full. I've also learned the universal sign for getting something you want is screaming until your face turns blue. Literally. Maybe when she passes out from lack of oxygen she'll think of something less dramatic, such as pointing. Riley has also adopted a new bodily gesture for letting me know she's not happy. She has mastered the stomping of her foot which partly cracks me up because it reminds me of my sister and her daughter, and the other half makes me want to say, "seriously, already?".

My sweet, innocent little girl is rapidly changing into someone I don't always like. I blame Eve for not listening to God and Adam for showing poor leadership. I still love her with all of my being and during her sweet moments my heart still melts, but the tantrum-throwing toddler stage is quickly approaching and this time it's me squirming at the thought of the change that has yet to come.

In other, better, news, Cale is experiencing some change himself. He has shown a complete desire to be up and mobile like everyone else. Crawling is no longer sufficient and I think he finally has enough motivation to get walking very soon. He can now stand up on his own, maintain his balance, and take a step! This is monumental!!! He's been taking two to three steps when we help him get going but this time he's figured out how to do it from his very own steam. God continues to amaze me by showing me that He has no limits for my little guy. I truly believe there are no boundaries and each day I'm reminded of how thankful I need to be in how far God has brought Cale. The work He has done with my son is indeed a miracle.

Changes, both good and bad, are a part of life. I suppose I should just be thankful that today, and only today, everyone I love is healthy and on this earth. Who knows what tomorrow could bring.