Wednesday, July 9, 2014


I don't want to forget these things. I don't want to look back at their early years and wonder where it went.

It's going fast, friends. Really fast. The days are slow from time to time but the months and the years...yikes. Summer is here, and almost gone it feels. We're trying to live it up the best we can, and I don't want to forget it!

Here are a few tidbits since the last time I posted:

Both kids are taking swim lessons and loving* it! *That was a hard fought love from Gracie Mae, she really really hated it at first.  She didn't mind the swimming, but the male instructor? No, thank you! She has always had a problem with men.  From her infancy, she was fine with women but when a man would try to hold her other than Daddy, she'd get pretty upset about the whole thing.  Our first male pediatrician when we moved was a rough change on her and now this male swim instructor thing was quite the to-do. She screamed bloody murder for the entire first two classes. The.entire.class. I thought about getting her a female instructor instead, but then where's the growth in that? It was painful for those two weeks. She told me over and over that she didn't want to go see "Mr. Chet" again.  But we made it through, and with a little extra coaxing and the thought of her ice cream reward if she didn't cry, Grace made it through our last swim lesson without tears (ok, she cried at the very beginning but then sucked it up and moved forward. I'll take it!). She had to skip this week because of a recent 103 fever and some lovely diarrhea, so hopefully we haven't lost all of our momentum.  Although I'm pretty sure that child would do just about anything for ice cream...

There. I did it, Mom. Now take me to my reward!

It probably helps that I let her pick her toppings...there's some nasty combinations in that bowl of frozen yogurt...

The funny thing about it is that Grace swims like a little fish at home. She just wants to go back and forth and back and forth, no fear whatsoever in our pool.  A little too bold, honestly.  She inhales water on the regular but just keeps trucking...ha! Coming from an ex-swimmer, I'm a very proud mama.  I loved the stories my mom used to tell me of my early swimming days.  She taught me to swim herself and I was swimming across the pool by 18 months. All I wanted to do was go back and forth from one side to the other. I adored it.  I remember not wanting to go to swim practice when I was five years old, but oh how I loved to swim. It ended up as a pretty lucrative deal- paid for a pretty stellar college education. Not to say that I'm banking on my next little swimmer diva, but it's fun to see that she enjoys it as much as I did. I'm hoping it lasts- it's such a wonderful sport.

Caleb has also started lessons and it's been such a great experience for him! He absolutely hates being on his back in the pool and last summer taking him into the water at all was a hot mess. It was overly stimulating for him and he'd get so excited that he'd flap and rock too much in the pool- we could hardly hold him.  This summer, we wised up and got him a floaty so we don't have to have hands on him directly all the time- much safer for everyone involved. But we also wanted to try and improve the behaviors, teach him a different attitude about the water.  So we started the swim lessons and it's been amazing. He isn't exactly comfortable on his back yet, but he'll do it for short periods of time now.  He earned a blue "I Did My Best Today" ribbon yesterday at his lesson for blowing bubbles for the first time and almost climbing out of the pool on his own- a HUGE feat for a little man lacking coordination and muscle tone. He usually just opens his mouth when he goes underwater- creating quite the panic in this mama. He has documented swallowing issues and I worry that when he inhales the water, he doesn't cough it out. Have you heard of delayed drowning? Yeah, paranoia but it's real. So we haven't really been able to put his face in the water because he hasn't grasped the "blowing bubbles" or "closing your mouth and not inhaling water" concepts yet.  But yesterday he actually blew bubbles one time during his lesson and we all broke out into full blown applause for him! Hopefully it was the first step to actual water safety... :)

ps- I was always firmly against the "participation ribbon" idea when I first became a mother. Now look at me posting pictures of my son's "I did my best today" ribbon! Philosophies change as circumstances change amiright?

What else? Oh yes, the movie buff. We have an addict on our hands.  I felt so proud of the limited screen time the kids got before they were about two years old.  Too proud. I think I celebrated it a bit much with a down pour of Disney movies over the past six months. Now, my daughter won't stop asking for it. "I wanna watch a moooooobie!" Consequently, moobie could mean smoothie or movie- both things she has become incredibly fond of.  Luckily, she'll quickly let me know which moobie she wants to watch to avoid any confusion. She's particularly fond of Hercules and Tarzan right now. I'm now particularly opposed to both. There's only so many times I can try to gently tip toe around an explanation that the baby monkey was eaten by the cheetah... "What happened to the baby monkey, mommy???"

She hasn't let go of her princess movies altogether, don't you worry.  She would rather live out those screen plays though, it seems. Did I mention I took her to get her first mani/pedi with mommy? She went for a girl's day with Nana, Aunt Cole, cousin Kate, and Mommy the first time and then I took her back a couple of months later. She was skeptical, but absolutely loved showing off her pretty nails afterward...a bit of a princess indeed.

She has also become acutely aware of her clothing and has an intense desire to dress herself in the same three dresses every single day.  No, not on a rotating basis. She'd like to wear all three dresses  Sometimes on top  of each other. Sometimes on a twenty minute rotating schedule. One, she calls her "Elsa dress". It's the blue dress she's wearing in the ice cream picture above. It's blue. So it's Elsa, obviously.  Then she has her "Anna dress" that is the same cut, from H&M (a gift from her uncles!!) but is pink with tiny butterflies all over it. I think I named it the Anna dress the first day she got it and it stuck. It stuck very, very firmly. Then there's the Cinderella dress.  Oh, the Cinderella dress. A point of contention. This was a hand-me-down from her cousin Kate and it has a flowy pink skirt attached to it so she likes to twirl in it. It's unfortunately a size 18 months...this is my two year old whom everyone thinks is four...  The dress has been vetoed completely at this point, but for some reason it continued to find it's way into her room- through laundry mishaps or storage adjustments. And the tantrums and meltdowns that would ensue if this sweet little girl caught a glimpse of that Cinderella dress were epic and dangerous. I think I may have burned it in a drunken fit a few weeks ago. We haven't had a tantrum like that since.
Not the infamous dresses, but some of her favorite dress-up clothes, which she would also be completely fine wearing all day every day.

Speaking of drunken fits- I'm leaving for Vegas today! B and I are getting away for a few days sans kiddo's!!! Oh man, I can't wait to drink without harsh consequences for a couple of days. Thanks Nana and Papa for this beautiful, beautiful gift. I promise I'll be a better mother and daughter when I return. At least for a few months weeks. Under promise, over deliver...fingers crossed.

Ok, a Caleb update. I think the last time I shared the PVL diagnosis as our most recent.  We have had a few more added since, of course. It's sort of a given that we get a new diagnosis every quarter or so around here. {sad face} I have to tell this story- I got a call on a Wednesday morning while I was at work a few weeks ago from CRS- the clinic that handles most of Caleb's specialties.  It was the genetics department and the message stated that they had finally received his Exome test results and the doctor would like to push our August appointment to a sooner date. Please call back asap to schedule. Um, whoa. We did this test back in December. I knew it would take about six months, but wasn't too worried about anything big coming back. Then one of my closest friends got her daughter's results back from the same test about a month before this phone call and it was bad. Very bad. And I spiraled. I was at work but as soon as I got that message I dropped everything to call back. They didn't answer. I called again and left a message. About twenty minutes later I decided that was long enough to wait for a returned call (ha) and called the clinic front office to find someone who was actually at their desk. I got someone who was empathetic and went on the hunt for me. I finally spoke to someone to schedule and they told me that she'd like to see Caleb, myself, and my husband as soon as possible- she likes to go over these results in person. I freaked out. Then she told me the next available was the following Thursday...over a week away. I sorta begged and pleaded for anything I could get over the phone. She proceeded to tell me that she can't read the report, it's too long and she's just a receptionist. Great.

So I waited a week. I slept about five hours that entire week.

We get to the appointment and my heart was racing. She came into the room and started asking about Caleb's development and how he's doing. Then she asked about when we're putting him in school. School? I'm waiting to hear whether or not my kid has some sort of disorder that in my fears could change our entire futures and your asking about school? So I had to ask her- what were the results from the test?  "Oh, well, they aren't very conclusive..." Wait, WHAT? Why am I here? Why did my husband need to get out of a critical meeting to also be here? Why couldn't you tell me that when I scheduled the appointment??? She went on to tell us that Caleb's results showed two mutations. One he inherited from me, one from B.  The one from B is recessive and I don't have the mutation so Caleb is just a carrier. It causes intellectual disability, but it shouldn't be the thing that explains everything since it's recessive (unless some other gene of mine that they're unaware of is interacting in a way they're unaware of...basically inconclusive). The other is a bit trickier.  Caleb has a genetic mutation they've never seen before.  His MAP7D2 gene has a mutation- it's an x chromosome mutation, and he inherited it from me. I don't know much about this, but I know that because I have two x chromosomes, I could shut it off. Because he's male and only has one, it may be impacting him. It may be the cause of everything. Or it could be the cause of none of this. There's no way to know. They've never seen it. Of course, the test has only been made available in the last two years, so the sample size is about 7000 people, not huge. There's a chance that they'll see it more as more people get the test done. They will be following Caleb and will let us know if the mutation pops up anywhere else. For now, it doesn't help us much at all. It's good to know, I guess...

What else with little man? Oh, he's getting eye surgery on the 29th of this month. His eyes both started drifting outward several months ago and we are working with one of the best pediatric ophthalmologists in the area. He's been on eye drops to blur his "stronger" left eye (we tried to patch it at first...ha, that was a fun exercise) for about four months and the right eye is getting a bit stronger so we're going to go ahead with the surgery to cut the muscles around the right eye and re-align it with the left. It's an outpatient procedure but we have to put him under general anesthesia so he can't move. I always hate when we have to put him under, but it's been fine every time so hopefully this goes the same. The problem with this surgery is that it's attempting to fix a problem externally that's rooted within Caleb's brain. So we will likely have to repeat the order to avoid a loss of his vision. If his eyes drift, his brain will attempt to shut one or both of them off because it can't process the images. So we need to keep the eyes straight to avoid that from happening (that's a very high level explanation of what our doctor said...I'm just trying to keep up over here...).

One more little hiccup. We spent a night in the ER a couple of weeks ago because one evening I was changing Caleb's diaper and noticed his right testicle was about four times its normal size. Yikes!! I called B over to see and he told me to call the doctor immediately. Haha, it was actually pretty alarming to hear that from B. He's the "wait and see" guy. So when I got ahold of the on-call doc they sent us to the ER because that sort of thing could be very bad. Luckily it wasn't anything bad, just a hydrocele sac. I hadn't ever noticed it before, so no idea where it came from but it's just a painless sac of fluid surrounding that testicle. Unfortunately, Caleb had to sit through an hour long ultrasound of his scrotum at about 1:00 in the morning to figure that out...but such is life. We have an appointment with the urologist next week to make sure we don't need to remove it, fingers crossed.

Ok, I'm about 45 minutes late getting in the shower to get this vacay started! Wish my parents luck watching the littles for the next few days, hopefully Grace's fever goes down and Caleb doesn't pick up whatever she had (that would be a miracle from God if he somehow avoids getting this...and Lord, I'll take all the miracles you want to send our way... :)

 Wait! Just remembered- I haven't told you about Disneyland, have I???  Ok, it was amazing and made me cry and still does whenever I think about it. I want to live there. ...well maybe not live there. But you get it. I'll write a whole post about it. So many good, good things. :)

Friday, February 7, 2014

And then I blinked.

Our babies are over two years old!

What? How is that possible? Can I call them babies still? Don’t answer that.

I am so beyond irritated with myself for not keeping up the blogging this past year, but I’m also trying to be a bit gentle with myself seeing as it’s been a whirlwind of emotions and baggage and fear and thrill and yeah, I was getting by but not with a whole lot of stability. Most of my down time was spent trying to get my mind off of it. Pinterest has become way, way too big in my life.

I’ve turned a corner. I’m feeling more control, more stability. Normal is becoming more normal for me now, my old visions are fading and acceptance, and even happiness, are back in my frame of reference. Breathing isn’t so hard, crying isn’t so frequent, and laughter can be heard often. It’s so much better.

So where are we?

The littles turned two at the end of October and spent their day at the zoo and playing with Mommy and Daddy. We had a birthday party and other kids came to celebrate and our house was filled with lots of people praising me for my dessert table and my color theme and showering gifts onto two very disinterested toddlers. We drank wine and beer and allowed juice boxes and cake upon cake for our two year olds. Then B and I left them with a babysitter and went to a Halloween party dressed in togas. It was great!

Grace is singing and dancing in almost every moment of the day. She wants to be heard desperately and exercises her independence at every chance she gets. She loves dogs and torments our poor cat with incessant chasing and sweet, sweet hugs when she can get her hands on her. She is obsessed with the idea of school buses and every single member of her family and anyone else who has a name in her mind riding one with her to undetermined locations. She sings her ABC’s all day long, skipping that elusive “mno” portion to get right to the all important P. She counts to ten without messing up now, but I loved her mixed up 3, 4, 7, 9, 5 better than this new correct version. She shakes her booty likea champion and can elicit a chuckle from any poor innocent bystander who happens to be within my view when I feel like showing someone the most recent video of her mad dance skills. She adores her cousins Kate and Everett and talks about her Aunts and Uncles and Grandparents whenever given the chance…
 “Grace, the phone is ringing- who is it?”

“Papa!...Hewoo Papa!”

“What’s he talking about?”

“Nana! Date! Errett! B! Cole!” (Nana, Kate, Everett, Uncle B, Aunt Nicole)

“Oh, do you want to go see them?”

“Yes. And Tayen tum too!” (Yes, and Caleb will come too!)

She loves her brother. Whenever I ask if she wants to go somewhere with me, she always asks if “Tayen” can come too. Why she still calls Caleb Tayen, I’m not sure. But I’m not changing it anytime soon, I’ll tell you that much. This time is all too quickly passing.

She brings him his sippy cup whenever she thinks he might want a drink. She finds a toy she thinks he might like if he’s throwing a tantrum. She pats his head if he’s crying. And she tells him she loves him every night before bed, even without a response in return. She is my role model, and I am certain beyond question that my children are going to change the world.

Our little man has an army of love, from his twin sister’s ever present tolerance and thoughtfulness to his miracle working ABA therapist, affectionately called his BFF. If you asked me 9 months ago if I felt like we had the support we needed, I would have started crying. I was fighting a losing battle against our Early Intervention program to get Caleb adequate therapy. I was on multiple wait lists for specialists, therapists, and evaluations. I was spiraling out of control. My depression had taken hold of my hope for the future and my ability to see beyond the crumbling pieces in front of me. Sure, I had good moments and good days. I could hold it together some of the time. Then I would think about life. 

Caleb had his first seizure at 8 months and his first MRI a day later. He got his first official diagnosis, Cerebral Palsy, at 10 months and then was approved for long term care before his first birthday. He was diagnosed with Autism at 19 months and started ABA therapies by 21 months. He got his Neuromuscular Scoliosis diagnosis at 25 months and just got his most recent diagnosis of Peri-ventricular leukomalacia (PVL) last week at 27 months. He had his second MRI in January and it confirmed loss of white matter volume, thin corpus callosum, and delayed myelination. They think he may have had a brain injury in utero around 24-28 weeks, but there is no way of knowing. He has no scarring, just the white matter loss/PVL.

Nine months ago, that report would have been another reason to crumble. Today, that report is full of answers and hope and optimism. Caleb had a CP diagnosis for unknown reasons. Cerebral Palsy is a bucket diagnosis for brain damage that causes motor dysfunction. Caleb had some brain abnormality, and absolutely had the motor dysfunction, but what was the damage. Usually there’s a brain injury. Usually there was trauma. Having a more clear picture that something happened isn’t a sad story for me
anymore. It’s a piece to the beautiful puzzle of Caleb. My boy who will change the world. He also has delayed myelination. DELAYED! That’s such a wonderful word in my world. Developmental delay is very different from developmental disability. We have assumed developmental disability for a while now, and I've come to terms with that, too. But the possibility that some of it is Delay is full of optimism and hope. His neurologist actually said that he can pick up some of these delayed skills, he just needs time. No guarantees what it will look like for Caleb- we might find that what is now classified as delayed myelination is in fact defective myelination, but for now there is no reason to assume he can’t develop. And he’s proving that every day.

Caleb is walking. My little boy is walking! He stopped using his walker all together a couple of months ago and now he can walk unassisted for over 100 steps at a time! He just started standing still unassisted this week and he stood for two straight minutes yesterday, while grabbing food from his therapist and feeding himself; a HUGE milestone to check off the list for our amazing son. He climbs up the stairs and pinches cheerios with two fingers to put in his mouth. He can fit the cylinder into the shape sorter almost every time and is getting pretty good at the triangle and square. He pushes buttons with two fingers and sometimes even just his pointer finger to turn toys on and to use his speech device to speak to us. He differentiates between two different buttons on his device most of the time and makes choices between two separate foods he wants to eat. He matches like 3-D items about 70% of the time and can hold a crayon to draw a vertical line and “color” for a few seconds at a time. He gives the most incredible hugs and will plant his closed mouth right onto your face for epic 30 second kisses if you ask for it in just the right way. He waves hello and goodbye and greets every.single.person he meets with a speed crawl/walk straight toward them and then a shake-you-to-your-core gaze straight into your soul. Of course, immediately followed by a huge smile and possibly a massive hug or a pounce right into your lap. Love.

Of course, I still have realistic expectations. I don't think Caleb will start brushing his own teeth in the next year, and I know we will struggle with getting Caleb to interact appropriately with his peers for a while, but who knows what five years from now looks like! 

I would spend hours thinking about ten years from now, twenty years. I would fixate on that "he won't be able to make it without me" phrase over and over and over. I would lose myself wondering who would take care of him, how he would survive, what he would think of his life.  Those thoughts aren't gone. There's not a piece of me that is sure Caleb will ever live on his own.  But there's a piece of me that wonders if he might now. A piece is actually optimistic about true joy in his life, and all of me is aware of the amazing impact he can have on us...on all of us.  If he chooses to. And I think he will.

Caleb is very special, in so many senses of that word. I have yet to meet anyone with all of Caleb's diagnoses. There isn't a story out there that I can follow along or learn from, one that matches my son.  At first that was daunting and lonely. Now it's liberating and almost exciting. We're writing the book with Caleb, and he's exceeding so many expectations every single day.

I've also been very blessed with doctors who don't box Caleb into a bleak prognosis. Optimism follows wherever he goes.  The least optimistic thing we've dealt with is his neuromuscular scoliosis = a probable spinal fusion in his future and possible lung complications along the road.  But we found an option right now to give us that hope and that optimism we were lacking, and I'm grabbing on with both hands- something I would have hid from a few months ago. I didn't want hope, I was sure it would only crush me. Now I look for it, as much as realistically possible.  :)

So there it is.  Our story isn't easy. It isn't fairytales and rainbows- but who's is all the time? I know that I'll need this space to vent about the frustrating times, the down right impossible times, and even the depressing times. We have those, sometimes a lot.  Sometimes it really feels like too much, and I'm not going to hide that. I've come to a good place, I think I've gotten through the grief cycle for the third time now and I'm optimistic that it's enough, and I'm ready. So I also need it now to shine those hopeful moments and those amazing miracles that we get to see so often. I hope you'll stick around- even if I can't come back as frequently as before. We are still here, and I think we might just change the world. Aren't you excited??

Their 24 month photo shoot! I loved it!



Birthday waffles!

We hung balloons over each of their doors for their birthday- the loved it!
Amazed to say this is a thing of the past. I can't believe it.

Grace picked a pumpkin at the patch for every one in the family, including two for her favorite- the cat.

Out of order...but their birthday zoo trip!


Whenever Grace is crying in timeout, Caleb crawls up to her to check on her.  Sometimes he'll throw in an extra hair pull or face scratch, but usually he just wants to make sure she's ok... ;)

Halloween! The Tortoise and the Hare! :)

Every time we go to the park, Caleb goes right for the swing saying "Wa" which means Wee or Swing! He could swing all day long.

Caleb's first attempt sitting in an actual chair with no straps AND drinking from a real straw! Champion of the world!

We don't usually do fast food, I swear. ;)

Gingerbread house!

This is how we watch football in our house.

Caleb has a swing in the play room, but Grace shares it with him sometimes.

Grace after exploring a giant bottle of vaseline. Lovely.

Grace's first tricycle!