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Tuesday, September 24, 2013

My Helper

I have a helper that loves to participate in chores, like unloading the dishwasher, wiping up spills, mopping and vacuuming the floor, watering the plants, and walking our Boston Terrier, Mobi.


video
Have a great week!

Tuesday, September 17, 2013

Thoughts a Year In

We are now over a year in from the diagnosis that changed our lives. In many aspects, life is exactly the same as it would have been if Belalu didn't have hypochondroplasia. Nevertheless, it's always in the back of my mind, but just as one facet of the many that make up who she is and how she'll face the world.

I am not afraid of different. I love that my daughter is different, and hope that my son will be, too, in his own way. I do not wish for either of them to have "an easy life." That does not mean I want their life to be hard, but I won't wish away the difficult moments. Easy does not make strong. Easy does not invoke contemplation and growth. Easy does not stir us to respond to challenges that compel us to shape our values and define who we are.

I cannot anticipate the challenges either of my children will face. I just try to prepare them to be morally and emotionally strong, compassionate and respectful to themselves and others, and to have integrity. To search for their passion and to value their place in the world. With these tools, I hope they will be able to face whatever challenges arise, and they will be better people for it.





Wednesday, September 4, 2013

Two Year Appointment

Belalu's stats from her two-year well visit. We'll be seeing Dr. Pauli in Madison next month.

Weight: 24lbs 4 oz; 20% on the AH chart
Height: 2' 6"; less than 3% on the AH chart
Head circumference: 20"; over 97% on the AH chart


Thursday, August 29, 2013

Two Years!

Recently Belalu turned two. This amazing girl of mine just gets sweeter and sweeter. She hasn't lost any of her determination, though. People who meet her, many of whom don't know her as anything other than an average toddler, tell me "you're not going to have to worry about this one." And those who do know that she is extra special, they reassure me that, well, we won't have to worry about her. I should clarify that I'm not going around telling people that I'm worried about her or anything- they just watch her for a while and then make their pronouncement without prompting.

This girl just projects confidence in herself and her capabilities. She figures things out. She gets where she wants to go, one way or another.

Her annual well visit was uneventful, as we hope they will be. She is progressing along her own curves. We celebrated her day as a family. The boys made her cupcakes while she napped, and then we ate them after dinner on the river.


It's been a busy, fun summer, so I've been absent on the web. But I didn't want to miss this occasion. Happy Birthday, sweet, gorgeous girl.

Friday, July 19, 2013

CSA 2013, Weeks Two and Three

My parents were visiting last week and then my computer crashed, so I was unable to report on weeks two and three of the CSA until now.

Week Two
For week two's box we got: Lovelock Head Lettuce, Spinach, Pea Vines, Radishes, Garlic Scapes, and Rainbow Swiss Chard. The lettuce, pea shoots, and radishes were used in salads with MB's* Asian salad dressing. This dressing is so good, I actually crave it! It made a nice complement to the sweet potato soup I made, also from MB* that also had some Asian food undertones (coconut milk, ginger, mint, cilantro). The potatoes came from the farmer's market, not the CSA.

The spinach went in a Spinach, feta and walnut lasagna, again, from MB*. I made this lasagna together with a more traditional pork/red sauce lasagna, thinking that I'd be the only one eating the veggie one. However, everyone had a little of both and really liked how they complemented each other.

The garlic scapes went together with last week's portion to make a pesto. MB* once again provided the recipe, where you combine scapes with almonds, parmesan cheese, olive oil, salt, and pepper. It is amazing. We've been spreading it on bread and also put it on some grilled chicken.

The chard I sauteed with garlic, cranberries, and sunflower seeds (yes, from MB*) like the week before, and my mom, who'd never had chard before, said she liked the combination of bitter, sweet, and crunchy.

Week Three
In week three's box we got: Garlic Scapes, Green Towers Romaine Lettuce, Lovelock Lettuce, Red Russian Kale, Pea Shoots

I immediately made another batch of the scape pesto to freeze. This stuff is soooooo good!

The lettuces and shoots went into salads. Honestly, the kale is still waiting to be used, but will be consumed tonight in the same Smitten Kitchen recipe as Week 1.

I kind of went crazy at the farmer's market last Saturday. There was finally tons of produce to be had (the season is so late this year). I bought tomatoes and basil to mix with mozzarella for Caprese salads; two baskets of snap peas, because Belalu and I ate one basket before even leaving the market; green beans; mint and cilantro; and 2 pounds of shelling peas. From the two kinds of peas and the mint I made a yummy cold mint pea soup. The basic inspiration was from MB* but I made some substitutions with ingredients I already had on hand. I had no lemons, but did have limes, so used lime juice instead and I had some coconut milk in the fridge from the other soup and used that instead of cream. It came out great, and is super refreshing for these scorching days we're in.

*Minnesota's Bounty: The Farmer's Market Cookbook by Beth Dooley


Tuesday, July 16, 2013

Our Story: The First NIne Months

After ten days in the NICU, Belalu had stabilized enough for us to finally go home. She had been put on Phenobarbital when they first realized she was having seizures, but still had two more after that, so they changed her to Keppra. That seemed to work. The Dr. wanted her to be seizure-free for three or four days before we could be released, so those additional seizures were devastating for more than one reason. Of course it was horrifying to see her turning blue and nerve wracking to hear the machines she was hooked up to suddenly go off in their shrill, heart-stopping tone; but it also meant that our countdown clock was re-started, and our family had to face more days apart while our day-to-day normality was put on hold for what seemed like an indefinite period of time.

It did indeed end, however, and we gladly left the hospital and the NICU to head home and start our "new normal." The medication made Belalu sleepy, so I was grateful that at least all that juggling of newborn and toddler was easier at first than I had anticipated. I should clarify that it was the first drug that really knocked her out- in the NICU she slept almost all the time, and even when awake, was pretty limp. I know newborns sleep a lot, but this was extreme. The nurses would try to wake her up for a feeding, and had a hard time of it. She would eat and immediately fall back asleep. Nevertheless, thankfully, we had no problems nursing and she never had to take supplements. It took some time to get the Pheno out of her system, and while the Keppra was better, she still was a pretty sleepy baby for the first three months. I was very concerned about how this medicine was affecting her brain development, but got little info from the Dr.'s, who assured me that it wouldn't. I have to admit I was not convinced. While in the NICU, we'd have these team meetings with all the Dr's studying our case, and when I had asked about the effects of the medicine on her development, the neurologist told me that it wouldn't have a negative impact. "Pheno is an imperfect drug, but it's the one we're most familiar with, so that's why we're using it." I asked him why it was imperfect- what were the side effects, and he didn't really give me an answer. Once we switched to Keppra, he told me that it was the Pheno that was making her so sleepy and limp. I still don't know why he didn't tell me that when I asked, and it made me distrust his explanations a bit. So, I continued to worry about her brain development in the subsequent months, especially since we had been told that there was a chance that the seizure-induced apnea that had caused her to turn blue could have affected her brain, too.

With E I was fairly laid-back about his development. I read up on the month-to-month milestones, and loved watching him reach them, but didn't worry if he was ever behind in some, because I knew he had his individual growth pattern and trusted that he would reach them eventually, which he did. With Belalu, though, we were constantly vigilant about her development, still not sure if the seizures were behind us or if they were indicative of something more serious that was still to be revealed. At two months, the neurologist determined that she could be weaned off Keppra. More anxiety as we waited to see if the seizures would return and relief when it appeared they wouldn't. At four months, we joyously kicked the infernal monitor out of our house for good. Its constant false alarms made us so indifferent to them that if any real emergency happened, I wondered if we'd even notice right away. I was convinced that Belalu was a normal, healthy little girl and the neonatal seizures were just some bizarre occurrence that would be left to marvel at when she graduated college and went on to do whatever amazing thing she was destined to do in the world.

Then, we watched a video of Essie at her age sitting in the bouncy chair, effortlessly reaching for the little velcro toy hanging down in front of him. And we realized that Belalu was unable to do it. At first I thought it was cognitive, but then J understood that it was physical. She couldn't reach out her arms at all. They were almost always bent at the elbows and tucked into her body. I immediately called the birth-to-three program to set up an evaluation. Since she was in the NICU she automatically qualified, but I hadn't believed it necessary at first. They confirmed that this was not normal and were concerned that she held her hands in fists all the time, too. We began to work on encouraging her to stretch out her arms to reach for things and to open her hands more.

By six months, she had made great progress, although her arms could not straighten out all the way. The PT thought that she was holding her arms in like that to help stabilize her balance to compensate for the low tone in her abdomen. At Belalu's well visit the pediatrician noted some concern that her growth seemed to have slowed down. She said that if it didn't pick up by the next appointment, we'd be referred to a specialist. I asked what it could indicate, and she said it could be a problem with her endocrine system. I didn't give it a lot of consideration, however, because I was convinced that everything was fine and in my ignorance, this didn't sound like it was related to the seizures or her arms.

Three more months went by, and all was well as far as I was concerned. And then we had the nine-month well check. I'll leave that one for it's own post.

Monday, July 8, 2013

Riding Bikes

A week after he turned four, E started riding his bike. We then lowered the balance bike for Belalu, and while I thought that it was too tall for her, we actually could lower it a little more. However, she still needs help because her tippie toes just reach the ground, so when she really wants to move, she goes back to the Tiny Trike. All of our bikes have been getting a lot of use this summer.