Here’s To Troubles Being Less and Blessings Being More

December 31, 2017Leave a comment

There’s a period of time from around the week before Thanksgiving until the new year begins when I basically fall off the grid. It is not intentional. Between travel and family obligations and work and the cold weather and the early sunsets and prepping for Christmas and a dozen other things I could rattle off, I tend to turn my attention solely toward our little family and finishing out the year in a way that feels tidy and…well, finished. I like feeling as if the next year is beginning with a clean slate.

So, here are a few highlights to show what we have been up to for the past few months. Thank you for everyone who has been checking in here on the blog, on our new Facebook page, and of course in person everyday. We are so appreciative for everyone’s love and support throughout Oliver’s galactosemia journey.

We traveled to Richmond to visit our families over Thanksgiving and Oliver got to partake in some of my mom’s homemade Korean food. Fermented soy being moved to the occasional food list has been a really nice surprise this year. Sharing cultural memories through food with my mom and my son is an incredibly special thing!

My family as a whole has been really supportive and accommodating when it comes to meals with Oliver. With only a few modifications, we were able to make our entire Thanksgiving dinner dairy-free (for the second year in a row)! The only item that we made special for John, Oliver, and myself was the gravy. (I have not perfected this recipe enough for others to find it to be an acceptable substitute for the real deal.) My sister, Tammy, who has always baked all of the holiday pies for the family, goes out of her way each year to make multiple pies that are dairy-free (apple, cherry, pumpkin), as well as dairy-free oreo balls which are a Lucy family favorite! She even makes sure to pick up dairy-free whipped topping so we do not miss out on any of the experience!

Oliver loved every sticky-fingered second of it!

Speaking of sweets! While we were with family, we celebrated Oliver’s birthday a little early. My other sister, Maria, was able to make the trek from New York and brought a special birthday cake for Ollie! A beautiful and absolutely delicious pareve cake from a kosher bakery in Queens. “Pareve” food items are prepared in accordance with Jewish law and mean that they contain no meat or dairy. You can also find lots of products in the grocery store labeled as “pareve” or “parve” and are marked with a “U” which generally means they are safe for a galactosemia diet. However, I always (always!) check the ingredient labels to be absolutely certain.

Oliver had his last check-up with his doctors in Philadelphia on Halloween day. Hospital days are always a little stressful, although we’ve learned to manage the anxiety a lot better as time has gone on. We received his latest numbers while we were in the car driving down to Virginia. Ollie’s blood tests are not your run-of-the-mill tests, so it always takes a while to get the results. Our team has been really great about contacting us with the preliminary results as soon as they can so we do not have to wait for the formal results to be certified before we find out where we stand. We were very happy to find Ollie’s downward trend for his Gal-1-P continues. He is down just slightly to 7.55 which is always what we are hoping for. We continue to want to get him down below 5 but everyone, including us, are happy he continues to make progress. The blood draw at his last appointment was especially difficult. Oliver is now very aware of what is going on and does not bounce back as quickly after the poke. When he was younger, he seemed to forget about the needle almost as soon as it was over, but this time around Ollie would point to his arm and start crying a few times over the next few hours. “Ouchy.” It is gut-wrenching. I know he will eventually understand why these tests are so important and hospital days will continue to be days we ply him with treats and fun activities well into the future. Whatever it takes to make these days go a little easier for him and to ease whatever discomfort he is feeling.

On the ride back, we stopped at Trader Joe’s and started off the holiday festivities right with some of their Almond Nog. We drank it out of paper cups in the car. Definitely was a tasty little treat. Christmas is tough because, like many holidays, it revolves around food, and sweets, and traditions, and American delicacies seem to heavily include dairy products. We never want Oliver to miss out on any experiences if we can help it, so we continue to find ways to adapt, alter, modify, or out-and-out change whatever we need to so we can be sure we can create happy holiday memories and traditions and never feel left out.

Whether it be holiday parades where candy is being chucked at us from every direction, building gingerbread houses at school, or baking Christmas cookies for Santa, Oliver did it all this year! We are starting to explain certain things to him, even if he can’t quite grasp it all fully yet. “This candy has milk in it, so let’s have this other piece instead.” It helps us get in the habit of trying to educate him instead of just making choices for him. It is important for us that he understands the why as much as is age appropriate.

Some times are harder than others. Have you ever tried to explain to a two-year-old why he can’t have a beautifully frosted snowman sugar cookie? And it keeps us on our A-game to always make sure we have an alternative available for him, whether it be at school or with friends. Which reminds me…our Ollie has the absolute BEST teachers around! They go out of their way to make sure that he is always safe when it comes to what he’s eating at school and are constantly keeping me up-to-date on current goings on so I know when another child’s parents are planning birthday treats and whether Oliver will be able to participate. It makes a big difference knowing we are not in this alone and they are helping make Oliver’s experiences the best possible!

We are ringing in the New Year at home, in our PJs, and O has been in bed since 8pm. Not the most exciting celebration night I’ve ever rung in, but we are so unbelievably happy to have another year of a healthy little boy under our belts. This time two years ago we were exhausted new parents who were running largely off of caffeine and anxiety and could not look confidently into the future to know better times were ahead. Fast forward to today and we are starting to feel a little more secure and a lot more confident…but still heavily caffeinated.

So from our family to yours, we are wishing you a very prosperous, joyous 2018! May it be filled with love and laughter!

Lucky Number 7(.88)

April 27, 2017Leave a comment

Now that Oliver is a little older and the doctors are satisfied that we have been properly restricting his diet, as well as his numbers trending downward, we have safely moved into only needing to head to Philadelphia a couple times per year. It’s both exciting and terrifying, like walking a tightrope without a net. Or maybe, with an invisible net that you know is there but do not have the comfort of seeing for the reassurance it provides.

Oliver’s last appointment was in early April and the day went swimmingly. Even though the visits are predictable, John and I both still get knots in our stomachs as the date approaches, and are on pins and needles the day of until we finally make it into that exam room. His team continues to be encouraged by his physical development and with his diet and our efforts as a family.

And then, of course, there is the blood draw. With age comes awareness so, as he gets older, we are never quite sure how he will react to the needle. But this kid of ours took it like a real champ this time around. (It helped that the phlebotomist this time was sooooo good; some people really have found their perfect calling!) He made his arm into a little muscle and watched the needle go in. And just as the needle was coming out and he was feeling the little sting and it seemed like he might cry, he caught sight of the Elmo band-aid and all was forgiven!

He may not cry when they poke him, but he wanted those balloons to come live with us.

Maybe the universe caught wind of the fact that waiting 4-6 weeks after his appointment for his lab results is almost more than we can bear, his results only took one week this time around. Huzzah!

7.88

That’s his Gal-1-P. 7.88. Have you ever seen a number quite as beautiful? As I’ve mentioned before, we are aiming for below 7 (below 5 would be absolutely amazing) and at his last appointment, his number had crept up a little bit. We were anxious and a little discouraged to say the least. But this time, down down down it went.

We still know this number is not the be-all, end-all, but it has become this emblem. An emblem of all of our work — the reading, the research, the long talks, the tears, the fears, the anxiety, the explanations, the trips to the doctor, the endless food labels, the fundraising, the awareness-raising, and the second-guessing (and third-guessing, and fourth-guessing). So, when we see it heading in the right direction, it’s impossible not to feel like all of that *stuff* has been worth it. Of course, the opposite is true, too. When his number went the opposite direction last time, it was hard not to process that as a complete and utter failure on our parts. But if I’ve learned nothing else over the past year and a half, it is not to dwell on the negative. No good will come of it.

Knowing there are no guarantees or even predicting how things will continue to go, we will just be over here basking in the glow of 7.88 until he goes back to CHOP in October.

Passing the time, waiting to see the doctor...

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February 26, 2017Leave a comment

Hello all of you glorious humans! You may have noticed I’ve been on a bit of a hiatus for the past few months. I knew heading into the holidays, we wanted to spend time focusing on enjoying family time, creating new traditions and memories, and catching up with friends, which meant taking as much of a break from the regular push-pull of life (including this site) as possible. Add to that scheduled break both John and I starting new gigs (surprise!) and bing-bam-boom…Happy February!

Here’s what you may have missed in Ollie’s world while we were away:

In early December, Oliver had his one-year check up with his metabolism specialists in Philadelphia. The appointment was one year and one day from his N/IICU discharge. Over the last year, Oliver has been in to see his doctors a half-dozen times and each time has been a measure of the progress he is making both developmentally and in terms of his numbers, specifically Galactose-1-Phosphate (Gal-1-P) and galactitol.*

Discharge day in 2015

One year later!

The appointment, which marked one full year of Oliver living with galactosemia, went really well. He’s showing proper weight and height gains, his physical development is right on track, and so far there hasn’t been anything to point to other complications. As always, the visit included a trip to the lab for a blood draw (awful as always, but that’s a post for another day) and should have included a urine collection. Unfortunately, we had made the appointment for late in the day and Oliver’s bladder, no matter how much we pumped it full of formula and water, just would not cooperate before the lab needed to close.

We also had our regular meeting with one of Oliver’s dietitians while we were there. We are finally (FINALLY!) making the move away from his soy formula and towards dairy-free milk like a big boy! We had been making a gradual, and pretty passive, shift toward weaning but now that we have an official green light, it’s both exciting and petrifying. His soy formula has always felt like the tether that was keeping him safe at dock. In my mind, it was also the thing keeping his numbers trending downward. Now, it feels like we are starting to drift out to sea and it is hard to feel at ease with the change.

Fast forward a few weeks (well, more like 6 to 8 weeks) and we received Oliver’s Gal-1-P result. To our surprise, it went up. Not a large increase, and not enough for his doctor to be alarmed, but it is still so disappointing. His numbers have been going down beautifully since his diagnosis…until now.

To give you a frame of reference, we are told that the Gal-1-P in a person without galactosemia should be less than 1. When Oliver was admitted to the N/IICU a year ago, his was higher than 130. As a galactosemia patient, Oliver’s doctor would be happy if his Gal-1-P gets down to less than 5 and remains there throughout his life. His most recent Gal-1-P prior to December was 9.6 (so close!); it was 10.33 at his December appointment.

Oliver’s Gal-1-P 2015-2016

It went up and we haven’t even gotten it below the ideal baseline yet.

It’s hard not to panic when you see the results for your child – once so beautifully trending downward – start on what appears to be an uptick. It’s hard not to feel as though you are failing him somehow. That you must have done something wrong, read the labels of his food incorrectly, given him something that he shouldn’t have. Familiar feelings of panic can start to bubble up and bring you back to that very lonely and sad place you once were earlier in diagnosis.

But then, hopefully, you will have a helpful, gracious doctor to bring you back to the present. Even though I know his doctor would have called with a follow-up if he had been concerned with Ollie’s numbers, I couldn’t help myself from calling his office. Thankfully he returned my call the same day, heading into the evening, sparing me from a restless night of worry and what-if’s. He reassured me that this isn’t out of the ordinary and reminded me that there is a standard deviation with the Gal-1-P (i.e. an acceptable error rate) of 1 or 2, so that this number alone isn’t a cause for alarm. He also reminded me that a small change like this is less concerning than a huge upswing that might alert us to something wrong and that, given Oliver’s very high number at diagnosis, he’s been very happy with his progress and trends so far. And, perhaps most importantly, he reminded me it’s always okay to ring him when I’m concerned, he’s happy to answer my questions (even if it’s for the millionth time; my words not his), and that Oliver is a healthy, happy kid.

We hung up and I proceeded to cry (shocking, I know), mostly from relief but a little bit because when you feel vulnerable and scared and someone is kind to you and reminds you, with some authority on the matter, that your kid is fine, it can be hard not to cry from a combination of happiness and gratitude.

Then, in January, Oliver was due for a check-up with the pediatric ophthalmologist. One of the more common conditions that can arise in children with galactosemia is cataracts. This was Oliver’s third eye exam since birth (once in the N/IICU and another at around 2 months old). I am happy to report his eyes are still clear.

Passing the time, waiting to see the doctor…

This also happened to be the first big doctor’s visit that I did not attend with Oliver. As mentioned above, John and I both started new jobs this year and we have needed to do a little more divide-and-conquering to make sure Oliver’s needs are being met. I was a little nervous to hear how Oliver would handle the dilation drops now that he has arms that can certainly take a swing at you and legs that can land a pretty good kick out of protest. John was happy to report that he took the drops and examination like the champ that he is.

Even though his eyes are still clear, we’ll continue to monitor him annually or sooner if we have reason to suspect anything with his eyes has started to change. We also managed to get a urine sample to the lab on that trip, so we are awaiting his galactitol result.

So, long story short: We’ve made it through a year! And so far, so good.

I’ll be back to providing updates semi-regularly now that the dust on the new year has settled!

Thanks for checking in!

*Of course, these two numbers aren’t the only two that matter and there are a host of other tests, measurements, etc. run each time he goes, but these are the two, at least at this point, that we are the most concerned with keeping in check.

Oliver's Rare Adventure

Navigating Galactosemia

Tag: gal-1-p

Here’s To Troubles Being Less and Blessings Being More

Lucky Number 7(.88)

We Now Continue With Our Regularly Scheduled Programming