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Monday, April 28, 2014

Friends I'm Glad to Have (Now That I'm a Special Needs Mom)

I am gearing up for a very busy week. We've got a meeting with our case worker from Golden Gate Regional to talk about therapies and the boys' recent evaluations. Then Henry's got his first PT session and the swallow study and and OT appointment. And then mama needs a yoga class. For real.

As we navigate this whirlwind of parenting, we're lucky to have friends and family there to support and encourage us. And I've been thinking lately about the ways that our friends show that they're there for us.

In general, our friends act like our kids are normal. They talk to them like any other toddler or baby, play with them, hold them - until Henry starts screaming for me ;) They commiserate about the struggles we have in common. Nap time. Potty training. Car seats. Vegetables. They cheer on our kids when they hit milestones no matter when those milestones happen. They find experiences they can relate to. Last week when Calvin had to have blood drawn, I was worried about him being old enough to be scared and freak out, unlike when he was a less-aware little baby. My friend Allison was like "Oh I had to take my daughter to have blood drawn and it was a nightmare!" Some things are a nightmare for all parents! Maybe Allison's daughter has had one blood draw and Calvin has had half a dozen, but she can still relate.

This makes us feel accepted. It shows us we belong in the world of parents and families, even those with typical kiddos. And in many ways our boys are doing so well that I think it's easy to forget or overlook that there's anything different about them at all. I'm still not sure if the babysitters at the gym realize there's anything unusual about them.

And though it's nice to feel that we and our kids are accepted, though it's nice to be treated like any other normal family, James and I never forget that we're not really normal. And it can be very powerful for us to have our not-normalness validated.

So here are some examples of how our friends have been supportive of our not-normalness. I didn't name names, but these people may know who they are :) And I want to say that of course we also have super supportive family members, some of whom I've written about before, but for this one I really wanted to focus on friends.

The Friend Who Asks
This is a friend who remembers that my kids had a doctor appointment, and then texts me later that evening to ask how it went. So simple, but so thoughtful and meaningful! This is also the friend who asks questions about the boys' diagnoses and how they are doing because she cares about them. You might think that asking me about 22q or Dup15q would upset me, and ok, it might. But when a friend takes sincere interest, to me it says that they care.

The Friend Who Researches
After learning about Henry's diagnosis, one of my friends texted to ask the exact name of the syndrome. She said that she was upset for us and that research was her way of dealing with things. I was really touched. Another friend brought us a book she had come across about families dealing with all different types of exceptional children (Um, I still haven't cracked it open yet... but I appreciate it! And I will! I will start reading it I swear!) Reading about our kids' syndromes or about the experience of families like ours tells me that these friends feel its important to learn about what makes our family different (and special).

The Friend Who Brings Dinner
If you show up at my door with a casserole, I will be forever grateful. Getting dinner on the table can be the hardest part of my day, especially on days when we have appointments. One friend, upon learning about Henry's diagnosis, responded immediately with "I'm bringing you dinner!" So to this friend, THANK YOU! You are awesome.

The Friend Who Babysits
I can't always bring both kids to our appointments. For example, Henry's swallow study involves some radiation (x-ray) so I'm not allowed to bring Calvin at all. I definitely need a babysitter from time to time. But most of my friends have kids of their own and are generally too busy themselves to offer to watch one of mine. So when someone does babysit for me it really means a lot!

The Friend Who Listens
James and I often feel like we're the only people we can turn to when we're feeling upset about the boys. But we know we do have friends who have been there and would always be there to listen when we need them, if we feel like we're ready to talk.

The Friend Who's Been There
We don't know many other special needs parents in real life. But we do know a mom with a son that also has 22q, and a few other people whose kids have different kinds of special needs, like medical conditions, have reached out to us on the interweb because our story resonated with them. There have even been friends who reached out because they have other kinds of personal experiences that made them feel connected to us. These have been small, but very touching, interactions. It really is powerful to hear from someone who can say they've been where we are, know what it's like, and made it through.

Big hugs and thanks and love to all our friends. Thanks for putting up with us, being there for us, and having fun with us. I hope that in some way we are able to do the same for you :)

Friday, April 25, 2014

Two Little Too Little Boys

We had a double header doctor appointment with our pediatrician on Monday. We doubled up Calvin's 2 year check up with Henry's 9 month check up. Neither of them gained any weight since their last check ups (Henry since beginning of March, Calvin since January). Their height growth was minimal. This is a problem. We are having Calvin's growth hormone checked again to see if that could be causing his plateau. It always seems to me like he's eating enough... he goes through picky phases, but it sounds like that is normal. Guess it's back to sneaking coconut oil into his meals. We'll see if his growth hormone level is still normal.

For Henry, it's a little complicated. He enjoys eating, but he's only able to eat small amounts at each meal.  He is spitting up or throwing up almost everyday and I'm about at my wits' end over it. It could be his reflux, so, as I've been instructed by our GI doctor and our OT, I am working with his Prevacid dosage to see if it will help. Sometimes it happens mid-meal and it looks like the food was just too thick and came right back up. His OT said it's possible that his hypotonia is causing slowness in his esophagus and making it hard for him to digest thicker purees. So I also have to be really careful about the consistency of his food.  He has a swallow study next week in which they will use an x-ray video to see how his mouth/throat/esophagus are functioning while he eats and drinks.

He still drinks formula, and had been drinking 24 cal/oz formula (normal formula is about 20 cal/oz) since December. It helped for a while, but now it looks like it's not enough because he still just isn't taking in the volume that he needs. I swear I'm feeding him as much as I feel like I can. But I am constantly worried that if I overfeed him he will vomit. And if he's refusing to drink I can't force him. We met with a nutritionist about a month ago and she encouraged me to add oils to his baby food. So I've been fattening up his purees with olive oil, coconut oil, and butter. I was hopeful that it would have made a difference, but per Monday's check up it hasn't helped so far. So his pediatrician told me to up the formula to 27cal/oz.

I have been through this over and over again with both boys. The baby is not gaining weight. So we dive into trial and error with ways of feeding and amounts to feed and what to feed. And it feels as though it all falls on me, the exhausted mama, feeling like a failure because - wasn't it my job to make these babies grow? Isn't that kind of my only job? And clearly I'm not doing it very well.

Our pediatrician told me not to be so hard on myself. She said we don't know what their limitations are because of their genetic syndromes. She is actually the first doctor to immediately consider their genetics before their diets when it came to not gaining weight. All our other doctors have immediately responded with more formula, more food, more fats, more calories. And of course that is the way to make a kid gain weight. But our doctor responded by suggesting a growth hormone check and a swallow study. And then later she said to go ahead and up the calories of the formula. But she wanted to first try to find out what they are even capable of in terms of growing and eating. And it was nice for once to not have the doctor's response feel like they are saying, You're not doing enough. Do more. Instead she seemed to be saying, You are trying and it's not working. We'll find out why not.

Deep breath and another laundry load of pukey pajamas and pee pee pants.

Tuesday, April 22, 2014

Henry's First Easter

Some-bunny just celebrated his first Easter!
After a beautiful Easter weekend, I am feeling very blessed indeed. This month has been so busy with Calvin's birthday and Easter that it has left James and me feeling a little crazed, but it has been a lot of fun.

On Saturday, we did a simple little egg hunt, just the four of us. Golden Gate Park is full of little grassy nooks and crannies and we found the perfect little sunny spot over near the tulip garden.

Calvin loved egg hunting!

This sweet sleepy boy took a nap in the shade. Big brother shared some eggs with him.

One of his eggs had bubbles inside. Guess the Easter bunny knows toddlers love bubbles!

After he found his eggs and explored his goodies, Calvin wanted to throw them all over the grass and collect them again! And again! And again. And again. Until we convinced him it was time for lunch.

We walked over to Park Chalet for a picnic with wait service :)
That's a beet salad with some very colorful beets. Calvin still entertained by those eggs!

On Easter Sunday we went to a church we have been visiting lately and it was a very nice service. They even had a little egg hunt in the sanctuary for the kids after church so Calvin got to hunt for eggs again! After church my cousins came over for lunch and Calvin and Henry got to check out their Easter baskets. They each got a Beatrix Potter book (The Tale of Peter Rabbit, and The Tale of Mrs. Tittlemouse) and a sippy cup that looks like a little green Mason jar. 

Happy Easter and Happy Spring from our family to yours!

Thursday, April 17, 2014


Now that Calvin is officially two years old, I no longer have 2 under 2! Everything will suddenly be easier, right? Ha ha.

When I was pregnant with Henry, I did a little interweb searching for blogs about having closely-spaced siblings ("Irish twins," depending on your definition). I was looking for advice on how to manage caring for two very little littles. Even before we knew that they would both have special needs we knew we were in for a challenge.

This post is about things that help/helped. My two littles aren't like typical closely spaced sibs. It will be much longer before they are both walking and talking. But I think a lot of our experiences are relatable. I'm not saying I'm in any position to give out advice. But maybe there is another mama out there trying to carry her 13-month-old alongside a 7 month baby bump and looking to read about how someone else survived :)

1. I set up a "baby station" in the living room.
For the first few months after Henry was born I kept our Pack N Play set up with the infant hammock in the living room. In it I kept a stack of diapers for both boys, wipes, and a burp cloth. Henry was not the kind of baby who would chill there happily by himself but it gave me a safe place to put him down where big brother couldn't poke him if I needed my hands free to do something. It also served as a 2nd diaper changing station and Henry could take naps in there.

2. I embraced "Babywearing."

Dear Ergo, Ring Sling, and Boba Wrap... what would I do without you?? I didn't bother with the snap-in infant seat on the stroller for Henry, I just wore him in one of the carriers and put Calvin in the umbrella stroller. Now he's big enough for the seats in our double stroller, so I use it sometimes for the two of them, but the Ergo + umbrella stroller is still really handy. And at the grocery store, Calvin rides in the cart seat and Henry rides in the Ergo. Most stores here don't have those double shopping carts and Henry couldn't sit in one anyway!

I also wear Henry around the house when he is fussy, but I need to do things (laundry, dishes... etc.).

At the playground the Ergo is a must because Calvin loves running around the play structure and climbing and sliding, and though I don't like to get all helicopter-y, he's a teeny guy and he still needs a spotter and maybe someone to play with and show his proud smile to. I can't just leave Henry in the stroller on the sidelines (for one thing, he would probably cry his face off), so Henry stays nestled in the Ergo while I follow Calvin around.

3. I try to be early so we won't be late.
This was especially helpful for those first few ventures out into the world when I didn't have a grasp of exactly what it would entail to make it out the door with both kids and all our stuff. So if we were going out in the morning, I would just start getting ready as soon as we were up. I'd get them dressed during those first diaper changes. I'd start packing the diaper bag as soon as I had my hands free. We'd get in the car as soon as we were ready, and since they were waking up at like 6am, even if it took us 2 hours to accomplish getting dressed, fed, and packed, we were still out the door by 8! Which meant I could make it to gym classes or play dates at 9 or 10. And when we arrived early, we'd just relax. Have a snack. Calvin would play or we'd walk around, depending on the destination.

I do this less now, and as a result we are late more often! I needed to remind myself of this one! It is also nice to do outings just by myself with the boys because then we're not trying to coordinate schedules with anyone else and no one is depending on us to be on time.

4. I joined a gym with a daycare.
A friend of mine talked me into it and I'm so glad I listened to her. I will say that, as with any child care option, it makes a difference if you like the babysitters. I have had only good experiences with the women who work at my gym daycare and they genuinely seem happy to see my kids when we roll in, so I feel very lucky and I feel totally fine leaving them there for a couple of hours while I work out and shower.

That's right! I get to shower without Calvin standing outside peeking into the curtain, and without worrying that Henry is crying in his crib. A yoga class and a shower in peace while someone else takes care of my children. #yesplease #itsthelittlethings

5. I found kid-friendly places where I could bring both boys.
Sorry Calvin... no more Gymboree or swim lessons... until you're 3 and you can take the regular class instead of the "Mommy and Me" class. If I can't bring baby brother, we're just not doing it.

So we got memberships to the California Academy of Sciences and the Bay Area Discovery Museum, both places with interesting things to see and learn about as well as toddler play spaces where both boys can play. We go to the zoo where they can both enjoy seeing the animals. We go to the playground, even though Henry isn't big enough for playground play. Believe me, he's more than happy to be snuggled up in the Ergo enjoying the ride. We visit friends' houses. We go to kid-friendly restaurants.

Getting out of the house keeps us all from being bored and gives the boys a chance for some learning experiences and social interaction outside of our little apartment bubble. Also I get to see grown ups :) It's definitely worth the effort it takes to make it out the door.

6. We bought cloth diapers with adjustable sizing.

Though potty-training Calvin has not been a walk in the park, I am glad to be using (and washing!) half as many diapers! For $$ reasons, we chose to buy cloth diapers which we wash ourselves, though we use disposables for night time and outings. I bought a boat load of Bumgenius diapers used on Craigslist and refurbished them myself.  Since both boys could wear the same diapers, it didn't matter which diaper I grabbed, I just snapped it to fit whichever tushie needed diapering. We didn't have to sort the diapers.

7. I shop online.
I would love to be the kind of person who gets out there and supports small, local businesses consistently and maybe I can be that person one day, but for now I need Amazon Prime! I do run errands with the  boys, but since each outing is kind of a big deal, I'm not going to just run to Babies R Us for one specific item. If they don't have it at our usual stops, then I'm going to go ahead and let Amazon Prime bring it to me in 2 days rather than planning a trip to an extra store.

Also, Amazon's "subscribe and save" program has been great for buying wipes and disposable diapers. We have a delivery scheduled for every other month so our supply of diapers and wipes just shows up without me having to remember that we're running out.

8. I made The Binder.

This one is more about having special needs kids. I use a binder to keep track of all their appointments, therapies, and medical notes.

9. We do "toy rotation."
Here's an article that I used to help me wrap my head around how to do toy rotation.

There are a few reasons that I like organizing our toys this way.
- Calvin really does more focused play when he has fewer options.
- The mess of toys on the floor is bad enough with a limited number of toys. If we had all our toys in the room.... OMG.
- It makes old toys feel like new when they get brought out after being out of sight for a few weeks.
- I can pull out a "new" toy as a Hail Mary if I need to keep Calvin entertained and he's bored with what he's got and I don't want to resort to #10.

10. I sometimes let Calvin watch TV. 
I wouldn't recommend this one, but I'll admit to it.  I generally keep it to one episode of either Mickey Mouse Clubhouse or Sesame Street a couple of days per week. Most often I play the TV card to get Calvin to stay in the living room and stop throwing toys into Henry's crib while I am trying to put him down for a nap. Sometimes it's because it's late afternoon and we're all tired and cranky and we all just need to chill out before dinner (read: I need to chill out before I can manage to get dinner on the table.) I know that TV is not a healthy solution, so please read on to #11.

11. I go for stroller walks.

This is actually my new solution for the late afternoon crankies: I put them in the stroller and go for a walk. Canky Calvin gets to rest, cranky Henry gets to nap, and cranky Mama gets to walk it off.

Another mama once said to me "If they're strapped in their car seats, even if they're crying, you know they're not hurting themselves so just drive!" She was talking about going for drives to regain her own sanity when her littles were making her crazy. Stroller, or stroller + baby carrier, can do the same kind of trick.

12. I try to get them to nap at the same time at least once a day.
It doesn't always work out. But once Henry's naps emerged as a pattern I could kind of control what times to put him down. So I do my best to make it so that Henry's middle nap overlaps with Calvin's only nap. Even half an hour of peace when both my children are asleep and I am alone can be glorious. I love them. But a mama needs a break.

13. I take help where I can get it.

Calvin and Henry's grandparents are on the opposite coast, as are all their aunts and uncles. But we are lucky to have some awesome cousins and friends nearby who are happy to help us out.

My cousin Hartley lives right upstairs, so some days he will just drop in after work to say hi to the kids and see if I need a hand. He'll play with Calvin or hold Henry while I cook dinner, he will even feed Calvin dinner so I can take care of Henry and he will even help with bedtime if James isn't home yet! That is a huge deal for me. Hartley also babysits once a month so James and I can have a date night.

Another cousin, Pam, lives down the street, and our good friends Ben and Rachel live around the corner. Pam and Rachel are sometimes free to watch Calvin during the day, so if Henry has a doctor appointment I can sometimes leave Calvin with one of them so he doesn't have to be bored and stuck in his stroller at the doctor's office. This is also a big help! And it was especially a big deal when Henry's appointments were getting very stressful and upsetting regarding his diagnosis with Dup15q.

We don't have a nanny, and I choose not to put them in daycare (except for a couple hours at the gym a couple days a week). I always wanted to be a stay-at-home-mom. I love it and I'm so grateful to be doing it! But a mama needs help once in a while, so I am glad to have these important people who love my kids and are there to throw me a rope. Thank you! Thank you! Thank you!

It's crazy and it's hard, and it's only the beginning! But there's also plenty of fun and joy and love. And I know it's only the beginning of those things too.

Tuesday, April 15, 2014

Hip Hop Hooray! Birthday Party Day!

I know. I go a little birthday crazy. Birthdays are a big deal in my book! So even though we had already celebrated Calvin's birthday with a special trip to the zoo, we also had a party the following weekend for Calvin and his friends. We had the party at an indoor play space down the peninsula called Hop'n'Play. It was awesome. The kids love this play space. Lots of stuff to climb up, jump on, and slide down... plus this awesome balloon room with fans blowing balloons all around while the toddlers run around screaming with joy.

Calvin in the balloon room back in January on his first visit to Hop'n'Play
Having the party here made party planning so easy for James and me. Hop'n'Play had the party room set up and decorated for us and all we had to do was get catering delivered and bring cupcakes and favors. Done, done, and done.

Calvin pretty much had the place to himself for a while!

Calvin and Lydia shared a birthday smooch!

Baby brother Henry brought his own chair.

These little guys are getting so big! All sitting at the table and feeding themselves lunch! 

More birthday cupcakes! With little labels made by mama.

Bubbles for party favors... "Thanks for popping by!"

Happy birthday dear Calvin, Haaaaapy birthdaaay to yooooou!

He may have had some help blowing out the candle...

...but he didn't need any help eating his cupcake!

"Whaaat? No cupcake for me?"

"Sooooo, what's the status on seconds?"

Oh my sweet little cupcake monster. I love that guy so much!

Turning Two at the Zoo

Calvin loves animals. His favorite toys are his animal figures and his stuffies and he absolutely loves going to aquariums and, of course, the zoo! So what better place to bring him on his birthday than the zoo??

While I got his birthday breakfast ready, Calvin played with his birthday presents without even realizing they were presents! Apparently my animal habitat gift wrap was entertaining enough. 

I needed a brilliant idea for making my usual brown paper gift wrap extra special and exciting for Calvin's birthday presents. Washi tape felt wishy washy. I wanted something more interesting. So I channeled my inner cut-paper collage artist and turned the wrapped gifts into backdrops for these animal figures he already had!

How much fun to have presents you can play with while they're still wrapped! I saved the wrapping after he opened them. I might mount the backdrops on cardboard or something so he can keep playing with them. 

After he enjoyed his beary adorable pancake, we broke the news that we were going to meet his friends at the zoo.

I used banana slices and dried blueberries to make this bear pancake!

He was So Excited all morning. He was signing nonstop giraffe, lion, penguin, zebra, tiger, monkey, friends, Autumn, go, car, elephant, bird, rhino... over and over and over! Yes, yes! We're going to see those things and our friends! Yes, Autumn is coming! Yes, we're going in the car! Now please please please put your foot in your pant leg! That's about how the morning went. 

It was sunny and warm at our house, so I excitedly dressed the boys in adorable shorts outfits and then had a minor nervous breakdown when we got to the zoo and it was foggy and chilly. I should have known! Visitors please note! It is almost always foggy and chilly at the San Francisco zoo no matter what the weather is anywhere else! So we dug up some sweatpants from the car and borrowed a sweater and blanket from our friends and made do. Not that the birthday boy cared! He was just thrilled to be there seeing all his favorite animals.

Hobbes? Is that you?

Watching some adorable monkeys. Oh and the zoo monkeys too. 
Zoo lunch for the birthday boy! Got the inspiration for the giraffe from Swanky Baby.

Calvin's favorite part of the zoo! It's my favorite too. 

Calvin was signing "zebra."

We went home for nap time and then the birthday boy got to open his presents. 

Wearing his new Mickey Mouse hoodie from Granny Anne and playing with his new work bench.
That evening, we met up with some of our cousins at SOMA Streatfood park, which is a food truck park. Calvin dug into his pork bao (a little Chinese sandwich), but he was really excited about his animal cracker cupcakes! 

Calvin picked the tiger! How appropriate ;) 

And birthday fun was had by all! More celebrating to come later that week at Calvin's Hop 'n' Play party...!