Find us on Surprisingly Special

As of 2016, this blog, Pancakes in Bed, is no longer active. Please come find us at!!

Friday, January 31, 2014

Keeping it Together (in a 3-Ring Binder)

We had a medical appointment every week in January. Last week we had Henry's therapy evaluation the same day as his sleep study! This week we had Calvin's cardiology check up. In February and March we have upcoming appointments with: speech & language pathology (Calvin), ENT (Henry), neurology (Henry), and our pediatrician (Henry). I am waiting to hear back to schedule appointments with a feeding specialist (Henry), a physical therapist (Henry), nephrology (Calvin), and endocrinology (Calvin).

I know, right?

Keeping up with the scheduling is crazy. Keeping up with the info from all of our specialists is even more crazy. At every medical appointment, the doctor/nurse/therapist asks questions about the other specialists and past appointments. It's important for me to have information on hand about both boys' medical histories including their (long) list of doctors and scheduled appointments. It's way too much to keep straight in my brain!

To keep all this crap everything organized, I took the advice I read in the Special Needs Parent Handbook and I put together a binder.

I made one binder for both boys and I divided into these 5 sections:
1. Calendar & Contacts
2. Calvin Medical
3. Calvin Services
4. Henry Medical
5. Henry Services

Under Calendar & Contacts, I have:
- Calendar pages for the whole year so that I can easily jot down future appointments. James and I keep shared Google calendars for both boys, but it is nice to have a paper copy to look at and to keep with the rest of our paperwork. So I make sure to keep both the online and paper calendars updated. It's not that big of a deal, and it's handy to have both.
- Two pages of contact information. The first page lists caregivers and social workers: name, relationship or organization, and phone number. Since our boys have sooooo many doctors, the second page has spreadsheets of contact info for all our doctors: one table for Calvin's doctors and a second table for Henry's on the same page. The tables include each doctor's name, specialty, medical center affiliation, as well as the phone and fax numbers for their departments. Here's what a contact info sheet might look like  for a kid with fewer doctors than mine :)

Under the Medical tabs I keep:
- A copy of the test results indicating their diagnoses (22Q Deletion and Dup15q)
- A table listing important events in their medical histories along with date and location. This includes things like their births, procedures, surgery, tests and diagnoses.
- Immunization records
- Growth charts
- Prescription info
- Handouts from the doctors
- Blank paper for taking notes during appointments
- My own notes from past appointments

Under the Services tabs I keep/would keep*:
- Paperwork from/about our regional center
- Paperwork from/about insurance to cover therapy
- Notes from therapy evaluations
- Notes and handouts from therapists*
- Info about classes and groups that might be beneficial

*I say would keep because neither of the boys is currently receiving therapy.

Lastly, I have a pocket in the back that holds the boys' insurance cards and some sticky notes.

In the future, I can transfer papers from the binder into our family filing cabinet as they become outdated. It may eventually become necessary to have a binder for each kid (I hope not!). If I was keeping a binder for each kid, I might make a section for each specialty. Or do something like this:

1. Schedule & Calendar
2. Contacts
3. Medical History
4. Recent Appointments
5. Services (classes/groups/therapy)

The Binder is definitely helping me keep it all together - literally and figuratively :)

It keeps the sheer number of doctors and appointments from overwhelming me. It gives me a place to stick all the paperwork I don't know what to do with, but think I might need again. It has been so helpful at all our appointments since I put it together.

When I brought it to our first appointment with the new pediatrician, her secretary made a photocopy of the page with the spreadsheets of contact info for our doctors. They were impressed. The doctor even literally said that I was very impressive. Not that the binder was very impressive, but that I was. And I thought, thank God I at least look like I've got it together! But I felt really proud of myself. I'm proud of that dang binder! I feel like it is concrete evidence that I've got something together, even if I don't have everything together. And some days, that's a really nice reminder!

Monday, January 27, 2014

Sensory Balloons

In my past life, I was an elementary school teacher. I didn't do much work in preschool classrooms, but I did a little and I even got a tiny bit of experience in a Montessori preschool. There were so many hard things about being a teacher, but I loved it and I hope I get to return to it one day. The weird thing is, I don't really miss it - but not for reasons you might expect! I don't miss teaching, because I haven't really given it up! I've got a whole new teaching gig cut out for me with the best two little learners I could ask for!

Calvin is at an amazing age (maybe all the ages are amazing??) where he is learning things quickly and eager to explore and I am super excited about putting together some learning activities for him. I have in mind lots of sensory and fine motor skill types of activities, similar to the DIY baby toys I posted a few months ago. So here's a DIY sensory activity I managed to get photos of today.

Sensory Balloons
- Balloons (I used all the same color so the textures would be the distinguishing difference.)
- Funnel
- Fillers: I used rice, black beans, millet, and sand. You could also try lentils, beads, baby powder, even liquids like hair gel, shaving cream, or just water... though that may be a whole other sensory experience ;)

Fill 'em up, tie 'em up, and you're all set! The idea is that kids can experience different textures and weights by squeezing and squishing the balloons. Experiences with different textures helps promote sensory integration. The more kids use their senses, the better they become at sensory processing. Here's a better explanation on why sensory play is important.

I was so excited to make these for Calvin! Fun! Activities! Funtivities! Yay!

And this is how excited Calvin was about the sensory balloons...

Yes, with a look of disgust he chucked them across the table.

So we made a game of chucking them into the wooden tray. #whynot #justgowithit

Maybe they'll grow on him? #smh

Thursday, January 23, 2014

Henry's Sleep Study

It was every bit as bad as I was expecting. I'm just glad it wasn't worse.

Why did he even need a sleep study? His ENT said he might have sleep apnea because he snores and because it's common in people with hypotonia. As much as I didn't want to do the study, I couldn't deny that it might provide important information about Henry. As much as I don't want him to have sleep apnea, if he does, it'll be better to find out soon.

You can probably imagine about how much fun a sleep study on an infant might be. On top of that, Henry is fussier in the evenings than most babies probably are. Definitely more than Calvin ever was. Bedtime has always been super hard for Henry. He has been a great sleeper for the most part, but falling asleep that first time in the evening is hard for him. But the real problem is that out of nowhere, the night before the study, Henry became a terrible sleeper! Could be a growth spurt or a cognitive leap or just terrible timing, but the night before the study my little guy who would ordinarily sleep 4 or 5 hour stretches was waking up every 1-2 hours. So I'm thinking, "Great. This sleep study is going to be a disaster."

It wasn't a total disaster. But the bad experience started even before we arrived at the sleep lab. Henry started crying as soon as the car left the garage and proceeded to wail the entire hour long drive. The drive could have been slightly less than an hour, but I got lost because like an idiot I didn't realize my lane was becoming "exit only" and I got forced off at the wrong exit. #facepalm

When we finally made it to the pediatric sleep lab, at least we weren't late because I'd left really early. The lab tech who worked with us, I think her name was Adriana, was very sweet and friendly, so that was a blessing (although she still got irritated later on in the evening... I'll get to that). There was a long hallway lined with small rooms for sleeping. There were also bathrooms, a kitchen, and the control room. Adriana showed us to our room and showed me how to raise and lower the sides of the crib. She told me to get Henry dressed for bed. The room had a hospital crib - the tall kind. The room also had a chair that unfolded into a very uncomfortable bed, a small desk, a TV, a sink, and table full of wires and small monitors. Adriana went to help another family check in. There were three babies in the lab that night. When she came back, she started attaching the wires to Henry.

One wire attached to his foot to monitor his oxygen levels. 3 or 4 attached to his shins to check for restless legs syndrome. 3 more on his abdomen and chest... can't remember exactly what those were for! Heart rate? CO2 levels? Sorry. Anyway, she put his pajamas on over these wires and pulled them into a bundle behind his head. I was thinking, "oh, that's not so bad!" She wasn't finished.

Over his pajamas, she added two elastic belts to monitor his breathing and there were wires attached to both of these. Then she started to attach wires to his head with this white, goopy, paste and gauze. She did a few, then had to go help another family. I thought again, "Ok, still not too bad..." She still wasn't finished!

At this point, I was thinking it wasn't too bad.... But I had no idea how many more wires were coming!

Henry was totally in a good mood as he was having the wires attached! 
Adriana came back and added more wires to his head Then she started on his face. The wires attached to his face with little foam sticky pads. There were wires to check eye movement and jaw movement, there was a "snore mic," and one of those little nose things with the two tubes that go up your nostrils (I'm pretty sure that is the technical name for that thing).

As Adriana started putting things on his face, Henry started getting irritated. Who could blame him?!
This still isn't all the wires, BTW.

I actually didn't get a good pic of Henry with all of the wires attached because he started getting fussy. But, you get the idea.Once Adriana turned the lights off and left, I fed Henry a bottle and he actually calmed down and went to sleep pretty quickly (whew!). I was praying that he'd stay asleep for a few hours, but it just wasn't meant to be. After about an hour he woke up and he. was. pissed. 

Adriana had told me I could stretch the wires out and sit down on the fold out bed with Henry, but I didn't want to mess with them because there were so many! So I would stand and hold him and give him the bottle or pacifier, and he'd calm down and fall asleep, but every time I put him back down in the crib he'd start screaming again. This went on for about an hour. I was starting to despair. I was thinking we were going to have to bail out completely and do it all over again another night. I was getting worried that even if we did stay, he might not sleep at all and they wouldn't get enough readings and we'd have to do it all over again. And I was feeling so sorry for my poor little Henry! He looked so uncomfortable and upset.

I noticed that a wire had come unstuck and I was worried about it (I didn't want anything to go wrong that might make them ask us to do the whole study over again!) so I went to the control room, which was right across the hall, to ask Adriana if it needed to be replaced. Here's where she got irritated. She came back to the room with me and exasperatedly told me that he was sweating off the goop holding his head wires on and that she really needed him to calm down before she could re-attach anything. I could have gotten irritated with her for being irritated, but I didn't. I managed to stay calm and she helped me move the bundles of wires so I could sit on the fold out bed with him. It took more time, but eventually he did go back to sleep and I was able to put him down. Adriana came back and re-attached the wires that had come off. 

That was the only major cry-fest of the night. He still woke up every 1-2 hours as he had the night before, but it wasn't toooooo hard to get him back to sleep. I managed to sleep in short stretches in-between soothing him. The study was supposed to end at 6am. Henry woke up at 5:40 and Adriana told us we could go ahead and go. She said they got some good readings and that it was ok that it was broken up instead of longer stretches of sleep. Henry was smiley and content as Adriana removed all the wires. After she was finished, Henry still had those round stickers stuck to his legs and torso. His face was sticky from the sticky pads holding the wires on and his hair was full of that white goop. My poor little guy. He seemed happy, though, and he didn't cry during the drive home. 

I'm just glad it's over! I know we'll likely have to do it again one day, but I'm not going to think about that right now. This one is over at least, and we'll hear the results when we see the ENT for our follow up. 

Wait, He Can Do That?? - Henry Wellness Update

The docs tell me he is small for his age... He looks so big to me!
Henry had his 6 month check up last week and met his new pediatrician. We loved our previous pediatrician but because of a change in insurance we had to find a new one. I like her so far. She has big shoes to fill. Since this was our first appointment with the new doc and since Henry's medical history is already complicated, the appointment was kind of a mess of us going back and forth making sure we were both up to date on everything with Henry's specialists. Henry is still gaining weight, but not fast enough to back off the 24 Kcal/oz formula so no change there. He's got a follow up with GI  in the next couple of months to check about his reflux. He's got a follow up with ENT to discuss the sleep study (which is a whole other story... at the time of his 6 month check up he had a sleep study scheduled to check for sleep apnea). Plus, he's got referrals to see a neurologist (to talk about the possibility of seizures), and a feeding specialist.

I still can't believe this guy is six months old. How can six months have gone by already??

I think it's easy to forget how old Henry is since he seems like a younger baby in a lot of ways. But the last couple of months, he has shown a lot of exciting development. In December, he started being able to actually grab his hanging toys and now he can pull them too! He can reach out and accept a toy and bring it to his mouth. This month he started rolling over more. Now he rolls from front to back almost every time he is put down for tummy time.

This week, Henry had an evaluation with our local Regional Center. At this type of evaluation, a nurse (Rosie) evaluates the baby for different areas of development (social, cognitive, motor... probably others?) and determines whether some type of therapy would be beneficial. Rosie is the same nurse who came to see Calvin last year for the same type of eval. She is wonderful :) 

Rosie reassured us that Henry's hypotonia is not as severe as it could be and that he shows the potential to make great progress with the right kind of care from us. It was actually a big reality check for me: Henry is still a healthy 6 month old baby! Henry can make progress if we help him! Henry can do more than we may think!

For starters, Rosie told me to stop cradling Henry like a little baby all the time. That was a wake-up call for me! What? Henry isn't a little helpless baby?? I'm supposed to hold him upright?? Rosie also told us to let Henry spend some time sitting in the high chair (it was actually Rosie who encouraged us to get this high chair a year ago... she said the hook on seat we had for Calvin didn't give enough support for building trunk muscles). Another wake-up call. Wait, he can do that?? 

Yep, he can do that. 
She also showed us how to have Henry do some baby sit-ups by holding his hands and guiding him slowly from lying on his back to sitting up, and then back down again. She said that physical therapy might be good for Henry (yes, please!!) so our Regional Center case worker is going to find a therapist (PT) for Henry.

Rosie's advice makes me feel reassured and empowered - like I can do something to help him besides comfort him and worry about him and make a zillion doctor appointments. The worrying doesn't help him anyway! I'm looking forward to working with a PT. I hope it doesn't take too long to get this therapy arranged. For now, it is nice to have a starting point, not to mention renewed hope.

Friday, January 17, 2014

Mug Muffins

Almost all the recipes I've posted are for breakfast... maybe I should learn to cook something for dinner that's worth sharing?? Anyway, it makes sense. I mean the blog is named after a breakfast food and breakfast is my favorite meal! So here's another one :)

I've been wanting to write a food post on these for a while, but I kept waiting until I made the perfect mug muffin that was nicely shaped and had a lovely and aesthetically pleasing distribution of fruit and oats. That never happened, so here go some imperfect photos of some imperfect muffins. Take my word for it that they taste yummy. Or better yet, make one for yourself!

We go through breakfast phases around here. For several weeks we ate these every morning. Then it was fried eggs. Then James started taking yogurt/fruit/granola in a mason jar to eat on the train and we started giving Calvin yogurt/fruit/cheerios and I stopped eating breakfast altogether. I think it's time to revive the mug muffins.

What I like about these is that not only are they quick and easy, you can pack them with great healthy grains and with an egg in each, they are also packed with protein.

Calvin's Blueberry Mug Muffin

Mama's Apple Cinnamon Mug Muffin

Here's how I make them:

The basic ingredients:
1/2 cup Rolled or quick oats
1/4 cup Fresh or frozen fruit
1 Egg
2 Tbsp Milk, any type
1 Tbsp Honey, agave syrup, or maple syrup

Optional add-ins:
Ground flax seeds
Chia seeds
Coconut oil
1-2 drops vanilla extract
Other spices

Put all the ingredients, plus any add-ins you desire, into a mug, mix well and microwave for about 90 seconds, until it looks firm but shiny. Dump it out onto a plate. If it falls apart, put it back in the mug and back in the microwave. If it doesn't fall apart, let it cool and enjoy! I cut Calvin's into pieces so it's easier for him to eat by himself.

- The microwave time depends on your microwave. Mine is a wimp and it takes like 2 1/2 minutes.
- The amounts depend on how big your mug is. You can tell from the pics that I made Calvin's in a smaller mug. I just eyeball the measurements. You just want to have more oats than fruit or it might fall apart, and enough oats to keep it from being too eggy.
- If you use banana as your fruit, you don't really need to add sweetener.

These are gluten-free, soy-free, and can easily be dairy-free if you use almond milk.

Wednesday, January 15, 2014


I stole a quote from a very dear friend of mine, Julie Kempler, and turned it into a hashtag. #ilikehashtags #ithinktheyarefunny And yeah, all right, maybe not every single thing has to be amazing this year (amazing diaper change? amazing zillionth load of laundry?), but I am an optimist and I like a nice, cheerful, catchphrase. So #yesplease, #onlyamazingthingsin2014!

2013 was a big one. We celebrated Calvin's first birthday and dealt with James' second motorcycle accident. We celebrated Henry's birth and coped with his diagnosis of Dup15q. James completed his PhD and got a new job. James and I both turned 30. The celebrations far outweighed the challenges, but they were very big celebrations and very big challenges.

We've got a lot on the horizon for 2014. We want to get Henry any support he may need to help with his development. Calvin will likely start speech therapy, and may be starting preschool in the fall! We've got plans to do some home-improving so that we can move into the bigger space upstairs. And we hope to do more camping trips and hikes and other family fun outings! Trying to wrap my head around all our hopes, dreams, plans, and goals for this year is pretty overwhelming. I've got my share of worry and fear about the things that will be hard. But in an effort to let go of worries and hold on to hopes, I'm starting a couple of new New Year's traditions to give myself concrete ways to focus on gratitude and optimism. Because #onlyamazingthingsin2014!

My awesome cousin Beverly shared this "Magic Moments Jar" that she made for her family. The idea is that each day you write down nice/funny/special things that happened on slips of paper and add them to the jar. Then at the end of the year you can go back through them and remember all those magic moments.
To make hers, Beverly bought a candle lantern and some sparkly label paper and letters/numbers.

Inspired by this idea, I made a journal version with the same intention: to record special moments throughout the year and look back on them in the future. I decided to put a quote on the cover to serve as a title. The words I chose come from a quote attributed to Mother Teresa:

"Not all of us can do great things. But we can do small things with great love." 

I love this quote because it makes me think that small things done with love and positive intentions can add up to something great. So maybe we can all do great things after all. It reminds me that all the small things I do all day matter, and that even big scary goals can be achieved by doing one small thing at a time. 

This is a brown paper Moleskine decorated with washi tape (I <3 washi tape!).
My hope is that the journal will help me record moments that are clearly magical and force me to search for magic moments even on days that feel blah or worse. Like yesterday when James' train broke down and he had to do a project meeting by phone and I got to the boys' joint doctor appointment without the Ergo and had to lug the big bucket car seat to carry Henry and then I caught the virus Calvin had... Not a good day! Not even a blah day! But it also happened to be the day that Henry first pulled his hanging elephant toy with enough strength to make it play music. And my cousin Hartley was kind enough to stop by and check on us when he found out I was sick. See? Magic moments. 

In an effort to deal with my new role as a mom of special needs kids, I have been seeking out some self help books for parents like me. (Any recommendations??) I've just started reading More than a Mom by Heather Fawcett and Amy Baskin. This inspired me to sit down and start writing some lists (I love writing lists. It's weird. I could keep a journal of nothing but lists of things). I wanted to write lists of goals and dreams... maybe ones from before I had kids that I might like to revive, maybe new ones related to this new phase of my life. I wanted to write lists of things I am good at and things I enjoy, things that are important to me... things that create my identity. I wanted to write lists of things or people from which/whom I can draw strength or lean on for support. So I sat down to start working on this and I began with headings, titles, for these lists. And then the titles started to rhyme. And then they evolved into a poem. And then I thought maybe other people might like a poem like this to start the new year by collecting their thoughts about self and dreams and support.

So here is my New Year's poem, and keep in mind that each line is meant to be the title for a list.

In case anyone out there wants to actually use this, here's the poem again with a bit of an explanation for each line:

Big dreams that are worth pursuing... 
Large scale goals and dreams, maybe old ones to revive or new ones to be brave about. For me, fixing up the house is a big dream. Going back to work one day (not this year!) as a literacy specialist is another one.

Little dreams that are worth doing...
These would be like smaller goals, not quite as grand, but things that are still important to you. For me this includes things like adding more crafts and recipes to the blog and taking the boys on more family outings and trips.

Strengths and talents to take pride in...
I'm not always good at being confident in my own skills, so I really wanted to take a look at what I think I am good at.

Friends and family to confide in...
This is just a reminder of who you know is there for you when you need them. It's a way to feel gratitude for those people and to remind yourself that you are not alone.

Heavy things to leave behind...
This is kind of a downer, but for me it helps to think about the things that are weighing me down in order to let them go. I have to feel the weight before I can really understand why it is so heavy and why I need to let it go. These are really vulnerable things, but I'll share one. I worry about what other people will think of me as a mom. There are so many different ways to do things as a parent, I fear that others will think my ways of doing things are wrong. This worry makes me feel guilt and shame even when no one has actually said or done anything to me. It's totally self-inflicted. It is just a manifestation of me questioning my own parenting. In order for me to trust my own instincts and choices as a mom I really have to move away from the idea that I need to please other parents.

Heartfelt hopes to keep in mind...
This is a place to think about those hazy dreams and wishes that you can't exactly pave a way toward achieving, but that you hope and pray for all the same. These are the things that lift you up and help you set positive intentions in your actions. For me they are things like the hope that Calvin will love preschool and that his classmates and teachers will love him. And the hope that people who interact with Henry will appreciate his specialness.

Things that bring me joy and cheer...
I am happy to report that this is by far the longest list I made. And I think it is important to really think about what makes me happy. Just like the list of friends to count on, it is a way to feel gratitude for each thing on the list and to remind myself to look for these things every day and find ways to cultivate them. Here are a few from my long list: Henry's smile and Calvin's toothy grin, going fun places as a family, getting together with our friends to play board games, and of course my morning coffee! (And late morning coffee... and afternoon coffee... Ha ha just kidding! Or am I??)

Ready for a bright new year!
It felt a little cheesy when it turned into a poem, but I do think that writing these things down helped me envision good things for the coming year and focus on the positive and hopeful instead of focusing on the uncertain. I really need that right now!

The year is only two weeks old, and I hope that yours is off to a good start :) So #cheers! And #happynewyear! And #onlyamazingthingsin2014!

Wednesday, January 8, 2014


Henry was a surprise baby. When I got pregnant with Henry, we were just starting to open up to friends and family about Calvin's diagnosis of 22Q deletion syndrome. As my pregnancy progressed, big brother Calvin progressed too. I've written updates on all his doctor's appointments, his milestones - always on the late end of normal, but still within the range. As I prepared for the new baby, I hoped/prayed/expected/assumed that he would be the "normal" one. That this new baby brother would be big and strong and have the expected number of chromosomes and genes. I even worried that being so close in age, he might actually surpass Calvin in his development. I prepared myself for the possibility that baby brother would be taller and stronger than Calvin... that they might end up in the same grade if Calvin wasn't ready to start Kindergarten on time...  that baby brother might be the one helping Calvin learn to talk instead of the other way around.

Henry was born big and healthy. He appeared to be doing fine with breastfeeding. Everything seemed as expected.

But after a few weeks, Henry's pediatrician told us he wasn't gaining enough weight. I promised to work with a lactation consultant to make sure breastfeeding was successful, and the pediatrician agreed but also asked to run some blood tests. I don't remember what all the tests were for, but I know one was a genetic screening. Although Calvin has a genetic anomaly, it is just that: an anomaly. James and I have been tested and neither of us has 22Q deletion. So it wasn't even really possible that Calvin's diagnosis had anything to do with Henry. The doctor said she wanted to do the genetic screen because slow weight gain without any other medical problems (like a heart murmur, or trouble breathing... etc.) was a red flag for her. 

Turns out she was right to do that test because the results came back showing that Henry has a tiny extra piece of chromosome 15 in most of his cells. That little extra piece was in 65% of the cells in the blood sample they tested. A little extra piece of chromosome 15 can mean a few different things, so more information was needed. Another blood test that had to be sent to the Mayo Clinic. A few weeks later, those results were in, but it was another few weeks before we could get an appointment with the genetics department to have the results explained to us. 

Those weeks in between the first test result and the appointment with the genetics doctors were very hard. We had this surprising and frightening news, and we were waiting for someone to be able to tell us what it meant. We kept it mostly to ourselves because didn't want to share what we were going through without more information. To add to the difficulty of that time, the weight gain and feeding trouble continued. We struggled to make breastfeeding work, but in the end I had to let it go - again - and resort to formula feeding for my own sanity and for Henry's health. 

When we finally were able to talk to the geneticists, they were able to tell us more about the test results (and clarify some things we'd read while doing our own Googling). If the little extra piece of chromosome 15 comes from paternal DNA, it usually has no effect. Henry's comes from maternal DNA. The doctors said the egg that formed Henry may have had the little extra piece, even if no other cells in my body have it. That is a possible explanation for how Henry ended up with this little extra piece, but it is not certain. When the extra piece of chromosome 15 comes from the mother, there are several possible effects and a range in how severe each effect may be. Possible effects include: slow weight gain (check), hypotonia - low muscle tone (check), some facial features including a button nose and epicanthic folds on the corners of the eyes (check and check), delayed motor skills (check), delayed language, intellectual disability, autism, and seizures. This genetic condition is called 15q duplication syndrome or Dup15q. 

There is a website,, with more information including family stories that paint a picture of life for some kids with this genetic syndrome. Honestly, when I read the family stories I kind of broke down. Although there is a spectrum, lots of kids with Dup15q don't walk until they are 2 or 3, or talk until they are 6 or 7. They likely have some degree of intellectual disability. 

We really don't know what this will mean for Henry. Just like Calvin, he will show us what his development will be. 

It was very painful to receive this diagnosis for Henry. It still hurts. I wanted so much for Henry to be blessed with normalcy. I feel guilty even admitting that because I don't want to sound as if I am ungrateful for the blessing that Henry is, just as he is. But it was so unbelieveable, unimaginable, that it would happen to us again. How could we, two normal, healthy, relatively young adults have two babies with genetic disorders? Why us? Why our babies? Why both of them?? 

It's tempting to want things to be fair. To want to believe that there's some balancing element that will make life fair for Calvin and Henry. But I don't think it is fair. Or will be fair. This idea of fairness or unfairness is something I have to let go of. The question of why is also something I have to let go of. Holding on to those things is like holding a grudge. It will only hurt me and hold me back. But the choice to let go is one I will have to make over and over again.

I try not to worry about the future. I choose to let go of my desire to agonize through every worst-case scenario. I stop myself. But in the back of my mind there will always be fear for Henry and Calvin's future. Especially Henry. I know all mothers worry and fear for their children. But not all of them have doctors reading them laundry lists of all the hardships their children are likely to face. I know I'm not the only one. I know there are other moms like me who know what I mean when I say it's not the same.

When Calvin learned to crawl, I breathed a huge sigh of relief. With every milestone he hit, a weight was lifted from my shoulders. He shows me every day that he is learning and growing. He shows me that he is all right. He is not quite like a typically developing 21-month-old, but he is funny and clever and curious and determined and thriving and happy. 

One day, Henry will learn to crawl. He'll hit his milestones in his own time and show us all that he is all right. I think it will take him much longer than Calvin. With his hypotonia, he still has some trouble holding up his head and he is nowhere near able to sit up on his own. He can roll over, but he rarely does it. He scoots a little bit on his belly and usually ends up turning in a circle :) 

Henry's smile lights up the room. And the way he smiles at me like he is so happy to see me brings me so much joy and for that moment all the fears and worries I have are forgotten. Nobody smiles at me like Henry does. I think no one in the world is as happy to see me as he is. And I am so thankful for that sweet, reassuring smile. Right now it is his way of telling me that he is all right. 

I feel like there is more to say, but that's enough for now. I waited to write about Henry's diagnosis because I have been having a hard time coping with it and I just wasn't ready to write about it. It is still hard, but I felt that it was time to share because it is such a relevant part of our life. 

Sunday, January 5, 2014

Merry Christmas and Happy New Year!

Henry's First Christmas!
Those "Baby's First Christmas" jammies were also worn by me, my brother Alex, and Calvin.

It was a very special Christmas at our house this year because it was baby Henry's very first Christmas, and for big brother Calvin it was his first Christmas at home and his first Christmas being old enough to start understanding (or at least learning words - ok, signs -  for) our Christmas traditions. It was really exciting for me, getting to teach Calvin the story of Christ's birth through books and hymns and a little creche with plastic pieces for him to play with. It was also fun reading him books about Santa and bringing him and Henry to meet "Santa" for the first time.

Granny and Grandpa (my parents) arrived with Uncle Alex the on Christmas Eve Eve. And Christmas Eve was, of course, spent in preparations for Christmas Day. Granny and Grandpa took Lola to midnight mass on Christmas Eve, but James and I didn't brave the crowded church with the babies (we learned our lesson last Easter!), especially at midnight! Calvin slept fitfully all night as if he was really anticipating the excitement of the next day. And he was up early Christmas morning (slightly grumpy for lack of sleep) to see the treasures Santa had brought!

Good morning, Henry! It's Christmas!

Post-demolition... Calvin explores the pieces of the block city and train track he has dismantled.

"Oh IIIIII'm gonna open your present, Calvin!"

It's Elephant and Piggie! (Our favorite Mo Willems book characters.)

Rrrring ding ding ding ding da ding da ding! 

Enjoying an Elephant and Piggie book with Elephant and Piggie!

I tried to make almond flour scones for breakfast, but I forgot to add the honey! No wonder they were so salty... oops! At least we had other things to eat instead... and actually everyone ate the scones anyway! Later in the afternoon, our cousins came over and joined us for a Christmas dinner featuring James' fried turkey! 

Abbie helps Calvin look for presents in his stocking.

But Henry, you look so cute in the antlers!!

Granny and Lola

Grandpa and Granny
 My cousins Dennis and Beverly brought the gift of the day: 49ers beanies for all!

Go Niners! Represent!

It's always so much fun to hang out with all my cousins! After all the eating, gift-giving, and of course the big family photo, we played some of the games that people had gotten as gifts. 

We spent the rest of the week hanging out with my parents and my brother and his girlfriend, Erin, who joined us the day after Christmas. Grandpa had to go home to Georgia on the 29th so that he could work on New Year's Eve, but Granny, Alex, and Erin stayed through New Year's. 

For NYE, some of my cousins came over again and we had another big party in our little apartment! 

Happy New Year, Lola! Happy New Year, Henry!

Pam and I get photo bombed... thanks Ramiro.

Erin and Alex

Happy New Year, my sweet 2013 baby! Your birth year is over, but everything for you is just beginning!

Seems to be a trend in our family photos these days...
Babies not looking or not smiling, and mom and dad laughing it off! 

Me (I got a hair cut!), my mom and my brother

Granny Anne and Ate Pam
 It's a Filipino superstition tradition to wear polka dots on New Year's Eve and New Year's Day for good luck in the coming year. So my mom got everybody polka dot socks for Christmas. Good luck and happiness for all in the coming year!
Polka dot socks all around!  Even the babies wore theirs! (My cousin Phoebe left hers at home...)

2013 went by so fast! Henry is about to be 6 months old and I just can't believe it! Even more mind blowing is how soon Calvin is going to turn two! I feel like since we became parents life has become such a whirlwind! I can hardly keep up! And here we go diving into another year of this crazy adventure of marriage and parenthood... ready or not... Happy New Year!