For the past 6 months, there was much unrest in our family. The cause for the divide? Elmo vs. Signing Time.
As you know, dear reader, Bertrand loves Elmo. And, despite my best efforts, he despises Baby Signing Time and Signing Time.
Victoria, however, loves Signing Time. And, you don't have to be Sherlock Holmes to guess which show she hates instead.
Matthew and I would regularly deal with tears when one show was on over another. We even went so far as to repurpose an old iPhone to play Signing Time episodes for Victoria while Bertrand would watch Elmo on his iPad.
(First world problems, I know.)
That all changed with Sesame Street Live this past weekend. Victoria is now a Sesame Street fan!
Bertrand couldn't be happier. :)
I, on the other hand, will miss Rachel and Signing Time. *sniff sniff* Here's hoping it's just a phase--for the both of them. ;)
Victoria loves Titi Karen and R! R is one of her best friends.
Today we went to visit a preschool for Victoria. Oddly enough, this is the preschool I'd looked at for Bertrand aaages ago when we first moved to Utah.
The school is still fantastic. (Victoria is now on the waiting list.) But, the experience was surreal.
Victoria didn't hesitate to start playing with the teacher and other kids. Despite some uncharacteristic shyness, she loved it.
Bertrand could barely sit on his own the first time he was there. Even now he can barely sit on his own.
It was weird to feel time fast forwarding for one child, but frozen for the other.
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Later at lunch with friends, Victoria had the time of her life playing with her best friend, R.
R is a little boy Bertrand's age, and I am constantly amazed by how sweet, kind and nurturing he is with Victoria.
It's a little bittersweet at times, since I wish Bertrand could play with her like that. I can see how much his attention means to Victoria.
I am grateful that we have good friends like R to fill Victoria's desire for friendship AND to take the intense little sister heat off Bertrand. :)
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We're recovering from our colds.
Next week once Bertrand is stabilized, we will adjust his medication as per discussion with his (new) neurologist. We'll be tweaking his lamictal and depakote dosage and timing. Our aim is to increase seizure control while minimizing cognitive impact.
I had a good laugh sharing details of Victoria's birth story with a friend the other day. So, in honor of her 17 month birthday today, here is Victoria's birth story. Feel free to giggle as well. :)
Newborn Victoria. Tiny but tough.
Victoria was born after just over 2 hours of labor. Over an hour of that was all pushing.
Matthew didn't understand my urgency in leaving the house. (Let me pack my power cord. Where is the camera? I want to shower first...) Labor with Bertrand was 15.5 hours, so Matt thought he would have time to kill.
But, within 30 minutes of arriving at the hospital I was past 10cm and Victoria was on her way.
(My water exploded on the admitting nurse as she was taking my vitals, and she was soaked from the waist down.)
What we didn't discover until almost an hour later at delivery, was that she was in the posterior position (hence the back labor pains and my subsequent fractured coccyx) and her umbilical cord was wrapped twice around her neck. The shortened cord was acting as a bungee, sucking her back after every push.
Regardless, Victoria made it out. She was born a little "unicorn", her skull shaped into a massive spike. She was also born with 3 skin tags on her right ear.
Within hours, her skull was reforming before our eyes. The skin tags, however, were very much there.
When Matthew took Victoria back with the nurse and pediatrician for her first bath, I immediately started googling "ear skin tags" on my phone. Search results returned possible hearing loss, kidney malformations, and mental retardation. I kid you not.
I mentally checked each off:
Hearing loss - Not a problem. I know some sign language and already have a connection with Utah School for the deaf and blind.
Kidney malformations - Not a problem. I know a great renal specialist here, a good surgeon, and plenty of moms of kids with renal issues.
Mental retardation - Not a problem. I have some experience with cognitive and physical delays. ;)
Phew! I was totally relieved! I knew we could handle these things.
Matthew walks back in with Victoria--sporting a little black string tied around one of her ear tags. He cheerfully informs me that the pediatrician gave Victoria a clean bill of health. Ear tags (and even extra fingers) are totally common. She just needs a simple plastic surgery when she is 6 months-old to remove 2 of the tags. The 3rd tied skin tag will fall off on it's own.
Wha?!?!
And then Matthew's mom walks in and, upon seeing Victoria, the proud grandma tells us, "I had the same skin tags on the same ear!"
Now that's when I started to freak out. My daughter could actually be normal?! I have NO IDEA what to do!
Haha! As it turns out, we're figuring things out just fine. ;)
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6 month-old baby Victoria. Perfection in pumpkin form.
We took Victoria to see the plastic surgeon when she was a few weeks old. We scheduled a date for surgery shortly after her 6-month birthday.
But then a few weeks before her 6 month birthday, we cancelled it.
Later in life, when she's old enough to make the choice herself, we'll support her if she choses to undergo the surgery.
But right now, whenever we look at Victoria, all we see is perfection.
The last few weeks, Victoria has been obsessed with a video of Bertrand's first hippotherapy session.
Almost every morning, she will scale out of her crib like a ninja (Yes, the crib is on the lowest setting and there are no bumpers, she's just ridiculous. I promise we've tried everything.), she'll run over to Bertrand's bed, climb into bed with him, snatch his iPad from the charger on the bookshelf, and we'll wake up to the sounds of this video--on repeat.
(It's cute, but trust me, the music gets old.)
We'll walk in to find both kids watching together. You can ask Victoria where Buddy is in the video and she'll point to him on the horse. Sometimes she'll clarify, making the baby sign, that it is baby Buddy.
It occurred to me, based on the amount of hair Bertrand had in the video (not much, like his sister), that he was about 16 months-old at the time it was taken--the same age as Victoria right now.
Wow. What completely different 16 month experiences for each child--AND for us as parents.
I went back and read the blog posts for that month of April 2009 and cried. It was heartrending.
There were many "firsts" that month. Yes, it was a first for hippotherapy. It was also the first time we took Bertrand to Duke University, and the first time we directly heard from a doctor that Bertrand's case was basically hopeless.
And here we are 3.5 years later. In some sense not much has changed--Bertrand's condition was recently reconfirmed as untreatable and fatal. And yet things are totally different.
For one, I'm a lot more tired and older. :) But now clearly words like "brain damage", "surgery", and "fatal" don't phase me as much, if at all. Heck, more than words--broken bones, hospital stays, travel across the country to see specialists, attempting to do the impossible--it's just what we do.
We deal. Maybe it's still denial ;) but I prefer to think we've finally reached a kind of peace. We're comfortable with doing what we can rather than obsessing about what we can't.
Maybe it's finally having a diagnosis? Certainly Bertrand's fighting spirit can be credited. I also credit a certain spunky little sister.
Often I feel like Victoria (perhaps like many 2nd kids?) is given the short shrift. She certainly doesn't get to ride horses, go to musikgarten, get a dozen one-on-one therapy sessions a month, or even get the same one-on-one time with her parents that Bertrand did.
But somehow Victoria, the tiny force of nature, is doing just fine. And, Bertrand? He's doing fine too. Both kids are making their mark on the world in their own way. And, this mama is proud of them both, now and always. :)
Today, Bertrand began another 3 week session at Now I Can. He'd lost a bit of ground after his surgery, but luckily he didn't lose as much as we thought. He is pumped and ready to work hard!
In other news, Victoria apparently inherited car sickness on an epic scale. She vomited 5 times on the hour long drive down to Provo and (just) once on the way back. The next three weeks will be "fun".
The past three and a half weeks since Victoria was born have flown by! Learning to balance the needs of two children has felt akin to barely keeping my head above water. As we get a better handle on parenting two kids, I hope to get back to posting on the blog more. Until then, here are some pictures of Bertrand and Victoria snuggling together! It's amazing how much they already love each other. :)
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DANCE, DANCE, DANCE!
Bertrand is currently at the dress rehearsal for his dance recital on Saturday, May 14! If anyone is attending his dance performance on Saturday morning, please let me know! We'll be hosting a simple celebratory brunch at our house and hope you can join us. :)
Bertrand's little sister, Victoria Elizabeth, was born a week ago on April 14th at 12:56AM. She weighed 6 lbs. 7 oz. and measured 18.5 inches long.
At her first well baby check-up yesterday, she already weighed 6 lbs. 11 oz. and measured 19.2 inches long! Proving that her nickname of "Piranha Baby" is well deserved. ;)
She also goes by the name "Little Miss Sunshine". Just hours after being born, she was smiling and hasn't stopped since. :) She is calm, alert, and cheerful.
Her last and most embarrassing nickname is "Princess Poopy Pants". This one is pretty self-explanatory. :)
We feel so fortunate to have TWO beautiful, wonderful children in our lives!
The lap space may be getting tight but there will always be room for Bertrand!
Medication Update:
While Bertrand's depakote levels were barely in effective range at their trough, his lamictal level was 9 at trough with an effective range of 3-14. This means we can't raise his lamictal.
Bertrand's depakote was raised to 375mg (125mg AM, 250mg PM) and resulted in a night owl! The medication is supposed to make him sleepy, but fewer seizures make him more conscious and interactive. Once the level evens-out in his blood, this should resolve.
Bertrand will get his all of his blood levels (including medications, liver, vitamin D, carnatine and others) drawn in another 1-2 weeks. There is concern for his increasing liver values.
He will then have another blood draw on May 17th after seeing his neurologist. She says that depending on his seizure & liver activity, we will consider raising Bertrand's keppra next.
Baby Watch:
Regular readers of this blog know that Bertrand's little sister is due today! Plenty of signs indicate that she will be joining us soon. We will keep you all posted. :)
This scene greeted me picking-up Bertrand from preschool on Monday.
Is there any wonder why he is sick AGAIN?
Bertrand missed his physical therapy session and dance class today because he has a cold. He has a stuffy nose, slight fever, and clearly feels out of sorts. This has him yodeling to be held non-stop.
When Bertrand would finally fall asleep, which allowed me to put him down, I was scurrying to get administrative items done before our big April deadline. No, not April 15th (although I worked on our taxes too). I'm talking about April 8th: our daughter's estimated due date!
It feels good to have my desk almost clear, inbox almost empty, baby items prepped, and Bertrand's follow-up appointments set! I almost feel ready!
PS - I was amused (and touched) to walk into this scene as I got out of my shower last night:
It seems that Daddy was doing some last minute studying for the big day! When I questioned him on what he read, he claimed to have "only skimmed it", but proceeded to correct me on ALL labor related topics for the rest of the night. Uh huh. :)
Bertrand's expression upon hearing "it's a girl". Priceless. :)
Last week was eventful! My father came to visit us and was a keynote speaker at the Spectrum Academy's Autism Conference. Bertrand had his IEP evaluation and qualification meeting. (Everyone from the Salt Lake school district was great and, not surprisingly, Bertrand qualified.) Lastly, we learned that Bertrand will be a big brother to a SISTER due April 8th! Bertrand was a bit unimpressed by the ultrasound (see picture below) as his sister came no where close to resembling his favorite red monster, but mom and dad couldn't be happier. :)
