Category: Moving Forward

Here’s To Troubles Being Less and Blessings Being More

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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.

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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!

IMG_4021 2My 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!

IMG_4098Speaking 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.

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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.

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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.

 

IMG_3832Whether 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!

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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!

Talking the Talk

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There is very little about galactosemia that allows our family to act proactively. I almost entirely feel like we are living life on the defensive, constantly combatting anything that might encroach on Oliver’s ability to live a happy, healthy life. On the defensive about what he eats and what the ingredients are. On the defensive against (mostly) well-meaning adults who offer him foods and treats without checking with mom and dad first (think: grocery store sample-giver-outers and Great-Aunt Bertha who thinks every kid needs a cupcake in his life). On the defensive against companies who change ingredients in their products with little to no fanfare or acknowledgment just as we’ve gotten comfortable and added them to our regular rotation. And on the defensive against other young children who don’t understand that, no, Oliver can’t have that cookie you want to share with him (or suppress the urge to lay hands on them when they teasingly wave an ice cream cone in front of him to be “funny”).

Really his visits to all of the doctors and dietitians are more observational than anything else and I would say do not even rise to the level of defense, never mind offense. If we are being honest with ourselves, we (meaning John and myself) along with the medical professionals, are really just monitoring all of his systems, his numbers, and any signs of what developmental or medical hurdles might be on the horizon. Even if we provide Oliver with what we think is a perfectly restricted diet, that is absolutely no guarantee he will not still have some difficulties in the future and there is nothing we can do to prevent them. Individuals with galactosemia may still develop neurological conditions or movement disorders or speech/language issues or learning disabilities or any number of the other complications that have been linked to galactosemia. All we can do is watch, wait, and, if we are lucky, implement appropriate interventions that may or may not help.

I write all of this so someone on the outside of our situation might be able to understand why we would contact our local agency responsible for early intervention services when Oliver was only seven months old and why we would have him evaluated before he even turned nine months old. Despite not showing any development delays at that point, we jumped at any opportunity to be proactive given the circumstances.

We are fortunate to live in a county in Pennsylvania that offers free early intervention evaluations and, if your child qualifies, free intervention services. This is offered at the county-level from birth to age three, and then by the local Intermediate Unit, which provides certain services, including interventions, to area schools, until the age of five. These early intervention programs bring together parents, practitioners, and others to help provide support and services to families with disabilities and developmental delays. Children are evaluated for physical development, including vision and hearing, cognitive development, communication, social and emotional development, and adaptive development, which includes the ability to complete everyday tasks of living, like getting dressed or feeding oneself.

Working on identifying animals by name and by sound

Working on identifying animals by name and by sound

So our little Ollie was evaluated once when he was not quite nine months old and then again last month at 19 months. At his first evaluation, he scored within normal range under every category and the evaluator provided us with further information on what we could keep an eye out for in the future and also simple ways we could aid in Oliver’s development, particularly with learning language. At that point, we were offered the option of entering into an early intervention tracking program where the county would follow-up periodically with us to see if more evaluation would be needed and we would have the ability to contact the coordinator with any questions or issues as they come. Again, in the name of proactivity, we opted to remain in the tracking program.

Prior to Oliver’s most recent evaluation, John and I were becoming increasingly concerned about his development, specifically his language skills. The standards for what is considered normal for an 18 or 19 month old vary depending on the source you reference. According to the Centers for Disease Control, an 18 month old should be able to say “several single words.” Compare that to a source like, What to Expect the Second Year, which is more specific, stating that most toddlers 15 to 18 months old can say “10-plus words…[s]ome gifted gabbers may be able to use 20 to 30 words” and warns of a language explosion from 18 to 24 months, where children have anywhere from 50 to 200 words by age two (p. 258). Such a range of what is considered “normal” can make it nearly impossible for a parent to objectively evaluate how their child’s speech and language skills are progressing, particularly if those parents are already hyper-aware of the possibility there could be issues in store for their child.

When we initially reached out to the coordinator to set up Oliver’s evaluation, we had to tally up his current language skills to give the speech therapist a greater sense of where he was. We filled out the evaluation form approximately three weeks prior to his actual evaluation date. At that point, his approximate language skills were as follows:

  • Words independently spoken: 6
  • Words he would say if prompted or if asked to repeat: 16
  • Words we were working on but had not mastered yet: 3
  • Words he understands and can identify visually but cannot say: 13

We were especially concerned that he was only independently verbalizing those six words and did not seem to be moving forward at all. For example, if we walked by a flower or an apple, he would point and say the word without prompting. Try as we might, we just could not seem to expand his independent vocabulary. Just to give you an idea of what a difference three weeks can make, by the time we actually met with the speech therapist for his evaluation, the list of words he was using on his own had nearly doubled. That is a huge stride in a short period of time!

Again he was evaluated in all of the categories and, fortunately, he once again has scored within the typical range in each. We are not able to rule out anything entirely, but it does set our minds at ease, if only temporarily, to have a professional evaluator confirm he has no delays in these areas at this time. She also confirmed that children who have speech delays might require many more repetitions of a word before it “sticks” than a child who has no delays. The speech therapist told us to continue doing what we are doing concerning his language development but also provided a few practical suggestions as we move forward:

  • Put items of desire (food or toys) in a bag so he needs to ask for the item or ask for
  • Increase expectations-once he knows the word, expect him to say it
  • Pair words/sounds with actions
  • Have him attempt a word about three times
  • If it sounds like he said a word, acknowledge him to continue to encourage language
  • Repeat single words such as up, up, up
  • Set up the environment so he needs to ask (ie such as putting on a plate little pieces of food to ask for more)
  • Try to get him to say the word before giving it to him
  • Give choices of two to have him ask for it
  • Continue to model sounds and words
  • Predictable movements/sounds such as 1-2-3 Go! Allow him to finish it.
  • Focus on one or two words per week
  • Continue to encourage not allowing for the pacifier

I would be lying if I said our minds are set completely at ease after this evaluation. Sure, it helps, but that relief will begin to give way to doubt soon enough. For now, we are going to continue to work with Oliver as much as we can, while still making the learning process fun and with as little stress for him as possible. Our vow continues to be to view every word, every physical milestone, and every new “first” as cause to celebrate and rejoice! Some certainly may be hard-won, but those victories will be all the sweeter in the end.

 

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

We Now Continue With Our Regularly Scheduled Programming

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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

Discharge day in 2015

One year later!

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

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...

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.

 

A Thousand Times, Thank You

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Today seems like the most appropriate opportunity to express our undying gratitude to everyone who contributed to our Team CHOP fundraiser for galactosemia research. Thanks to all of you, we exceeded our $1,000 goal! I cannot think of a better way to honor Oliver’s first birthday than by raising this money.

I have a secret to share with all of you: I am terrible at asking for help in my personal life. Even if I am truly in need of rescuing, I tend to feel burdensome and vulnerable (two things I have a really difficult time with). Most of the time, I would rather just carry the burden of whatever I am facing by myself, or by leaning on John. I think it stems from a fear of rejection or a fear of appearing weak to others (I suppose that’s for me and my therapist to sort out though).

By way of example, John and I had decided to board our dogs at their favorite kennel starting the day before my due date last year and had expected to pick them up some time the following week, in hopes that Oliver would make his debut and we would have a little time to get settled in with our newest addition before adding two wild beasts to the mix. A week tops, we thought. But Ollie came a couple of days later than expected and then we found ourselves in Philadelphia so we needed to extend their stay. We knew they wouldn’t mind since they consider it a home-away-from-home and more akin to doggy paradise than a kennel. But I knew they would be running low on food very soon and we didn’t know when we’d be back in town to drop some off. I agonized over what to do and finally, despite my feelings on the matter, we asked our very dear, sweet friends, Erin and Ethan*, if they would mind dropping some by. I am pretty certain my text to Erin contained repetitions of the phrases “I’m so sorry to bother you” and “I promise I’ll reimburse you for the food as soon as I can” and “If you can’t, I totally understand.” Did I mention how bad I am at asking for help?

Anyway, this is just my long-winded way of telling you all that it was not and is not easy for John and I to ask for your help in our cause but we are so very glad we did. We still cannot believe how amazingly generous and thoughtful each of you has been! I do not know if I could say thank you enough times to adequately cover just how thankful we are, but I promise I’ll spend my lifetime trying to!

Most of all, we are just so grateful to have ALL of you in our lives. To know that Oliver has a tribe of such amazing people in his corner is more than we could ever ask for. It warms our hearts to no end. You are all kind, loving, wonderful people! Thank you, thank you, thank you! A thousand times, thank you.

Happy Thanksgiving and thank you for giving the Lucy family that more much to be thankful for this year!

*Just a little note about our friends, Erin and Ethan: they are two of the most giving, kind and loving people we could ask to have in our lives. A blessing, truly. And I feel 100 percent confident in saying our hesitation in asking for help had nothing to do with us thinking they would be unwilling to help us out  and everything to do with our own neuroses 🙂

Strangers No More

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It’s the night before the big race and I’ve had the overwhelming feeling all day that the universe is trying to remind me just how good and decent people can be.

Irish greeting, literally "a hundred thousand welcomes"

Irish greeting, literally “a hundred thousand welcomes”

Take this talisman. It’s hanging on the front door of my lodgings for the evening. I had never heard the phrase before, but recognized it as probably Gaelic and when I looked it up I see the literal translation is “a hundred thousand welcomes” and it is, in fact, a common Irish greeting. After the day I have been having today, it seems evermore meaningful.

When we originally planned this trip to Philadelphia, John and Ollie were supposed to be joining me so we had booked a hotel near the start/finish of the course to make life easy. We booked months in advance and it was still ridiculously expensive. We could have booked something further way, but the added headache of finding parking and navigating closed roads hardly seemed worth it. We even contemplated getting up super early and driving in from Harrisburg the morning of but, again, that seemed like a logistical nightmare. So when we finally decided a few weeks from race day that it would be too much to schlep poor little O to the race to hang out all day just to catch a glimpse of me for a few seconds on the course, we started to reevaluate. It’s one thing to justify the expense of the hotel when all three of us needed a place to stay, but now that it would just be me flying solo, it gave me pause. Don’t get me wrong, the idea of having  a large comfy bed all to myself for the night in a luxury hotel sounded fantastic, but it just seemed like  a little too much. So I decided to go with an Airbnb rental instead. Renting a room in someone’s home, rather than their full apartment or house, would get me close to the start line without breaking the bank. Double win.

I was a little apprehensive about it but I knew in the end I was only really going to need a place to lay my head for the night and the race starts at 7:30am so I would be out the door so early that even if it ended up being the worst experience of my life, it would only be brief. To my surprise, my host, Bill, has been absolutely amazing. Accommodating, easy-going, kind, and helpful. Truly everything you ever wanted in an Airbnb host. And the thing is, I would have showered him with all of this lavish praise even before  he did the most amazing thing ever.

When I got here, we started chatting about my plan for the morning (he already knew I was running), other times I had been in the city, etc. I mentioned that my most recent Philadelphia outings have been to CHOP where Oliver sees his doctors and then we started talking about my #TeamCHOP fundraising efforts and galactosemia in general. I didn’t think much of it more than just making conversation. But before he left for dinner, he came by my room and handed me most of what I paid to stay here and insisted I put it towards our fundraising efforts. He said when his daughter was born, she spent some time at CHOP and it is a place that means a lot to him as well. I tried to tell him it was absolutely not necessary. And then I cried. I cried a lot, you guys. How could I not? How could a completely out-of-the-blue act of generosity and kindness from a person who I had just met not reduce me to tears?

It’s a reminder that goodness is out there and shows itself when it can. Sometimes in little ways, and sometimes, like now, in the biggest and best ways. I’m going to carry this feeling with me into tomorrow where, with any lucky, I won’t need the little emergency car to come scrape me off the pavement and scoop me into the cart. Wish us luck!