It’s been a rough couple days – so much happiness about the upcoming trip, but daily we’re hearing more eyeball updates from Ben that are scaring me. Besides the color changes he told me this morning that he’s seeing floating spots that are blurring his vision in his good eye. My stomach sinks every time he tells me new things… He’s having more accidents – he’s not able to see things to the sides of him so he’s knocking things over, breaking and spilling things, bumping himself on corners. It’s hard on him (he feels so bad about the tumbles) and hard on us (I’m increasingly scared about his safety.)
While there’s a possibility he could legally drive if his eyes did not change at all going forward, I have to admit that it’s not wise for him to try driving when he cannot at this point safely gauge a car’s speed well enough to even cross the street on foot. And realistically, his vision is deteriorating – it won’t stay stable. (And we’re still waiting for the final official eye report from the most recent visit – if his visual field is at 20 degrees he cannot drive.) Putting him behind the wheel I feel would be a danger to himself and others, so I am having to make peace with the reality that as things stand, he will not be able to drive. Which makes my heart ache…
Those were my two big goals – he could read print well enough to love reading (that it wouldn’t hurt/strain his eyes) and that he would be able to drive (for the independence that brings.) He won’t be able to drive. I know it’s not the end of the world, it will be okay. But wow… this really stinks. Continue reading “Happy and Sad News”
Background first – B’s eye doctor told him he needs to be really careful to NOT rub his eyes, he needs to be gentle on them.
We had tucked the kids into bed and B came back out and handed me a notebook with this message. Spelling and punctuation are as he wrote it.
MY BAD (I MEAN IT!!) THOUGHT!
1. I go to bed
2. I rub my eyes!
3. My retinas re(?)atach*
4. I don’t learn breiale**
5. I can’t see at all.
6. I DIE.
Bonus 7. I’m not able to go to Uneversal Studios.
* He asked us if the retinas may detach or reattach and which was bad, he just mixed this up.
** He meant braille.
Poor, sweet boy. We reassured him that rubbing his eyes would not make his retinas detach (or reattach!) and that we will help him learn braille and he’s NOT going to die from this and we will make sure he sees Harry Potter world at Universal Studios soon. It did make me giggle that Harry Potter world was his “Bonus” and ultimate worry. 🙂 But it also broke my heart.
(If you’ve NOT read Harry Potter then a brief explanation – Harry was the target of the evil bad guy but somehow managed to withstand the death curse thrown at him despite many others being killed by said bad guy. He became know as “The Boy Who Lived.”)
And this is repeat info for some of you but for those of you not familiar with Ben’s story – some background before the punchline. Apologies in advance – I censored a bit, but Ben’s story is not for the faint hearted.
I spent three months of my pregnancy being told I was going to lose Bennett. (In very kind and gentle terms, for the most part.) At 10 weeks we discovered I was miscarrying (again, we had just had our second miscarriage in July then got pregnant with Ben in August.) I was put on bedrest and I was already on progesterone supplements and we were sent to see the OB back up for my midwife then he sent us to the two perinatologists/high risk specialists. We also had a few other ER trips in there for complications (like, oh, my water breaking at 22 weeks) during which time poor freaked out ER doctors and OBs on call at the nearest hospital had to see our ultrasound and tell us we were losing our baby. (We reassured them we had been hearing that for months.) The perinatologist when he first saw my ultrasound called in his partner so they could be check it out – which is NOT comforting for a pregnant mom, let me tell you. They said it was the biggest subchorionic hematoma they had seen in the last decade of their practice. Woo-hoo! We aim to impress. Wiki Link (Essentially my placenta was not cooperating and instead of nourishing Ben it decided to partially detach and just bleed into my uterus, surrounding the amniotic sac. Not cool.) Continue reading “The Boy Who Lived”
We’ve been quiet here, I’m guessing no one is still following along but I needed a spot to document this wonderful and wild journey.
We’ve been pondering (a) where we should take Ben to see and experience things and (b) how to afford it. 🙂 He wants to see the Tardis in England, he’s a huge Dr. Who fan but alas, passports alone for a family are size will cost over $1000. (I still hope to make that happen someday!) It’s also tricky in that with my work I’m pretty much on call all the time – I have to plan vacations literally 9 to 10 months in advance and I’ve got babies on the schedule for next spring and summer already. I can’t just drop everything and go on a trip, but I don’t have more than week off call for months into 2014.
Stateside Ben’s big wish was to see Harry Potter world in Florida. (He also wants to see California, a waterfall, a mountain, snow, I should write up his whole list.) I did some preliminary research and saw tickets for the park would run our family about $1,000, it’s a 16+ hour drive (I am NOT that ambitious) and plane tickets were about $400 each (times 8!) Plus hotel, food, etc, etc. I felt so sad to tell him but I just didn’t see any way we could financially pull that off anytime soon. He said that’s okay – he would be happy with going to visit Legoland or Going Bonkers here in town. 🙂 He’s such a sweet kid… and he had no concept of the money involved, so we’ll be sure to get him to Legoland at some point, too!
We were running Kit to an eye exam and when we came home there was a letter on our door step. I wasn’t expecting anything so I opened it and read the letter – several times, because I couldn’t believe what I was reading and was in complete shock. I think I worried Kit when he saw me crying and saw the FedEx overnight package and wondered what bad news the letter held! Continue reading “The Adventure Begins”
Heidi and C worked up this little instructional video for her quick-rise ciabatta bread.
(By “her” I think he means the one I learned from him and Rebecca?? 🙂 )
4 cups flour (I do half wheat)
1 1/2 teaspoons salt
1/4 teaspoons yeast
2 c hot water
Mix all, cover and let sit 8 to 18 hours or somewhere in there.
If you want a same day dough, increase the yeast to 1 teaspoon then let rise at least 2 hours or until bubbly looking. It has a less intense flavor but is still delicious.
When you want to bake flour a cutting board (we use a flexible one from IKEA) and dump the dough onto it, patting into an approximate lump. Preheat oven to 500 degrees (I do 450 as our oven runs hot) with a dutch oven inside of it. When hot, dump the dough ball into the dutch oven and COVER it (this is important.) Cook about 20 minutes, uncover then cook until golden brown on top. Dump out, cool, slice and enjoy! Add some rosemary, garlic & cracked pepper if you want a fantastic savory bread.
Here’s the pan we got:
We bought the Lodge Logic 5-Quart Double Dutch Oven with Skillet Cover – it was comparable in price to others, it’s free shipping on Amazon AND the lid works as its own pan to make yummy, crusty cornbread. Or you can use it on the stove top for cooking, though I’ve not tried that yet because we have a cast iron skillet with longer handle. I like that it has the handles on the side vs. the top because it’s easier for me to grab and flip off when cooking ciabatta bread in a 450+ degree oven. We love it, and if we ever go camping we’ll be set for campfire cobbler. Though I did recently make a cobbler in this in the oven – a dump cake variation, it was delicious. Plus extra iron! I was told to cook in cast iron when pregnant and anemic, for all you expecting ladies.