Cardiology Update

This morning went really well! We left early, around 730. That is pretty unusual for us to all be out of the house that early. O wasn't very excited to go to the doctors, even though he was reassured there were no pokeys at the appointment. He cried a bit but soon we were on our way.

We drove to the same level at the same parking garage and parked in the same row as usual. We have a whole routine. It's just easier that way. Even though we have more health issues that the normal family, I am always reminded of the families that have multiple appointments weekly. We have done our time too, but wow, our visits really have lessened. 

Owen watched monster trucks for his entire echo that lasted about 45 minutes. Sis was over the dark room after about 20 minutes, and she had eaten half a banana, barbara's cereal, and mama's milk. I spent most of the time walking her, putting her on my shoulders. O cooperated so well, repositioned himself just like the tech wanted. Owen said a few funny things at the appointment... The tech asked him to move so she could see his Fontan better. He said "What's a Fon- Pam?" reminded me of Step Brothers where Will Ferrell can't say the woman's name Pam and keeps saying Pan. She also asked O if  monster trucks were his favorite. His reply? "I could watch them all day. All day, son!" Oh my... Chris and I watched the show The New Girl and that is a quote from that show that we have said one too many times around Owen. All day, son! 

BP, height, weight check

Echo check

EKG check

Re-room check

O2 sat check

He was satting between 91-94 % and his fenestration is still open. That is the surgically placed 4mm slit placed to help his heart circulate blood especially short term post operatively. It is still open which means that if it doesn't close on it's own he needs to have it closed in a cardiac cath. The Riv is going to give it a year to close on it's own. 

Owen sang him some of his favorite songs, and he now calls O his "Jukebox King" (even though O thought he said "Jokebox king". Owen's choice songs for the day were "A Horse with no Name" and Barbara Ann. The Riv gave us his blessing on preschool (starting next week, ahhh!! It's only 2 3 hour days, but it is way way way out of our bubble of comfort. He will be without us for 6 hours per week with 10 other kids! AYAYA! He also mentioned that there are quite a few kids in the area who do not have any vaccinations so there is going to be that risk in any public situation. (whooping cough, flu, pneumonia are his biggest risks, anything that affects the lungs). The good aspect of the Fontan circulation is that if he was to become ill with a respiratory issue, oxygen would be helpful. Before, with just the Glenn circulation he wouldn't tolerate oxygen as it would put too much pressure on his system.

Another good bit of news.... No more lasix! We need to watch for swollen ankles and eye area, but we are back to our basic med of 1 baby aspirin daily. 

.....And we are planning on getting the g-tube out in October! 

....Weight looking great, at 50%th percentile and 36.5 lbs. He looks skinny but he is just right!

...He will need annual liver labs but not for another 6 months. The Fontan circulation/pressures can be hard on the other organs, mostly the liver. 

At the end of the appt The Riv asked us if we had any questions. We didn't, and he asked O if he had any. Owen took a moment, then bowed his head, and said "Dear God, thank you for all the wonderful doctors, the kindle, and everything else." What a goof! We were all cracking up, and at least he was kind enough to rate the docs before the kindle!

It is really refreshing to pop the bubble of protection we have been living in. We have avoided so many social situations to protect O, to keep him healthy. It has worked for the most part, especially this last year and around his surgery. Honestly we have become pretty crazy germ phobes with people germs (but not phobic with dirt, or pets, or home cleanliness, obviously!) It has been totally worth it and I wouldn't have done anything different. He still has gotten sick, but about half the amount of times as kids out in the world. Us merging into a more "normal" world where he is out and about among germs is such a great thing for him and us. It is a HUGE control aspect that we are learning to let go of, albeit slowly.... He still will wash his hands like crazy, but he will get to be a normal carefree kid more and more. And that really is the stuff that dreams are made of!!

Late summer garden

Yesterday I was thinking it had been awhile since I'd taken some garden pictures. The mornings have been amaZingly cool, flirting with the early fallish feel. Hands down Fall is my favorite season (trailed thisclose by spring). 

There is something to the change of season, the unpredictable temps, the foliage turning green again, and the layering of clothes that makes me crave the cool crisp air and a hot mug of tea or coffee. 

So I left the house for a few seconds, with Ara enjoying her lentils for breakfast and Owen playing the kindle for quiet time. (He has a yucky cold which he shared with sis and we are a weary bunch around here...)

Lo and behold an unwelcomed critter!!! A baby deer munching on my tomatoes, marigolds, strawberries, and nectarine tree! Darn it! 

Mama watching (encouraging? Proud?) I had noticed the back gate was open a few inches a few days ago and I made plans many times to close it... And, rare occurance, you'd never believe it, but I got distracted. I know. Never happens. 

Getting a little too big for those spots. I scared it out, shut the gate, checked on sis, and assessed the damage, then enjoyed a few more moments in the garden solo. 

I love the hairy lil stem of the sunny flower, so happy!

My crazy awesome jack and the beanstalk worthy pole beans with very tall climbers and very little output.

Reaching for more support.

Collections of marigolds and sunflower seeds, projects done minutes/moments at a time.

Withered artichoke, bloomed and dried. 

Yellow squash with about 5 on it

Crisp cucumbers have made many a marinated salad. 

Good luck this year with my heirlooms, getting 2 almost apple sized ones daily. The other night I made a cauliflower crust tomato basil pizza... So tasty!

Zinnias are just so happy. I love ones like this where the petals are opening up, so fresh the petals, unfurling new beauty! Wish I felt this way in the morning. Ha! 

Today has been filled with a lot of Kleenex, fluids, hugs, and attempted rest. Sis's energy is pretty decent even with a fever over 100. But she is crashed on me right now, poor babe. Last night was exceptionally rough, Ara wouldn't fall asleep in her crib so she was in bed with us, figuring out what a sore throat/ post nasal drip felt like. O was in our room thurs/fri nights up coughing, needing help with boogs. She (oh the irony!!) slept great those nights, only up one time one night and 2 times the other. She's finally getting a break from teething/ or was resting up/fighting the bug already. Last night was one for the books, sadly. Chris got me a fitbit flex for my birthday, it has been really fun to track my exercise. You can also track your sleeping/ restlessness. A normal night the last week (keep in mind this logs waking up out of bed at least 3 times) averages about 15 times awake/restless. It tracks this based off of movements. Last night was 30 times restless/awake. I think I'm not going to log that for awhile. Makes me feel a little crazier!!

 At least we got snuggles in, it was sweet to snuggle in between the coughs and sneezes. We are never in a shortage of those. 

Prayers all get better. I'm the last one to get hit, or avoid it. O also has a cardiology appt this week then starts preschool next week, ah!!!!

Bodega birthday

After our camping trip last month we decided to go again. We musta been delirious as Ara barely slept that trip... But we gotta keep doing things!

The drive to bodega took quite a while... About 4 hrs with a quick pit stop in Vallejo. Chris's solution at one point was to jokingly put on his ear protection, ha!

We had hoped to drop the trailer off, then head to visit Evan and his parents in Santa Rosa. This was a special treat for our camping trip! And it kept taking a bit longer, we were getting more excited to see them. I thought I knew my directions and ended up steering us off course... 20 minutes... Out & 20 minutes back. Darn!!  

We made it though, and enjoyed checking out their home and of course catching up with our sweet friends. 

O and Evan picked up like no time had passed. 

Evan is doing so well, cancer free! He has some side effects from his treatment but he is really thriving!

Kiddos hanging around the trailer.

Our camp spot for the first 2 nights on the marina. Forgot wood!

Forgot cream too, but there was a coffee house a 20 minute walk away. The only thing I can walk to in 20 minutes around home is the mailbox so I was sure glad I forgot the cream! 

Seal & seagull watching 

Lookin like home!

Beach time

Happy sand face

Jogging buddy- enjoyed a great 4 miler with my girl on my birthday!

Sweeties

Succulent collection off of the roadhouse coffee shop

Cup o tea or coffee ya really can't go wrong!

More beautiful succulents out front of a walkable restaurant. We really debated ordering to go as the menu was right up our alley_- corn soup, heirloom tomato salad, fresh fish for me, and locally raised chicken for Chris... But I was somehow organized and cooked and froze 3 meals for us to enjoy. I didn't want to be chopping and washing the whole time. It really turned out nicely and I'm going to do it again if possible. And we will go out to dinner just us sometime soon:). 

The birds cafe was new(er). Great patio and view of the bay and our camp site.

I thought worker bees never rested?

Pier walk

Sleep at night girl then you wouldn't catnap through the day... Actually I thought she was growing out of falling asleep on me so I was tickled she did a few times on the trip!

The train! My gal pal Joy gave it to O for his first birthday and he still loves it! Ara is taking off on it all over the place! 

In order to stay our 3rd nite we needed to move spots. This one was awesome too! Can't beat 45$/ nite for on the water. 

We bought wood and had a nice campfire with popcorn, vino, and sunflower seeds. 

O was waiting for the surprise... Popcorn!

Such a happy kid. My wish was for sleep this year- I was greedy and wished for 10-8am. Ara slept 9-12 then 1230-530 then into 830!! She had a great time playing with Evan too and musta been tuckered out!

Of course the sleep wish is silly. But it was so nice! It was one of the few time ever I was out of bed before her!

So blessed to have my sweet fam together to celebrate getting a little older. I'm loving having the trailer, it's some work but a lot to gain. Chris and I were in bed around 930 at night each night, half because we were tired and half because Owen was alseep on one end of the trailer and ara was on the opposite end. We would whisper our conversations on the bench in the middle of the trailer. Kinda romantic;).

Cheers to 31!

Peepers

 Meet Peepers! Peeps is our newest addition to the pack. The lazy gals still are only producing 1 egg sometimes skipping a day, especially with the recent stress of an additional hen. I have been wanting to write about our new hen but I wanted to wait until she was safely integrated into the flock.

The condensed-long-story-short version is that we inherited a pet chick from the Aubins who wanted to have a chick but not raise the hen. Lily & Wynt took great care of Peeps but they grow fast, poop a lot, and stink! And, they were meant to roam not hang out in a cage. So here we are!

If you've had chickens before you know that pecking order is for real! After weeks of introducing/exposing Peeps to the other hens I can rest (mostly) assured that she is safe closed in the coop at night. That's not to say that she isn't the lowest in the order, nor that she doesn't get put into her place frequently, but she has tolerated the initiation pretty well.

She was staying in a separate coop apartment for about a month, separate water & separate food to maintain, plus she would try to escape/peck at me when I was feeding or watering her. I AM SO GLAD she is in with the others... she still escapes into the field almost every day, but when I walk down to the coop to lock it in the evening, Peepers comes sprinting to me. She is quite friendly although she does peck at my wedding ring & shoes.

The chickens love having a larger yard to enjoy, as we had a smaller yard for so long to protect them. I think along the way we decided that the risk of losing one is worth the daily enjoyment of them being free range. They get out all day, ~5 days per week. Dust baths, scrounging, and prancing around is what they do. Owen and I watched them for 20 minutes straight yesterday, it was such great entertainment.

Court took this silly pic of me moving Peeps from the field into the coop for the night.

A kid who eats

 Although O has been off his feeding tube for 2 years now (!!) he still struggles with gags and textures of different foods. He also is hesitant to try new foods.

Ara is a different story! She has enjoyed eating from the start, and doesn't turn anything away. I have combined a few methods of feeding, following mostly Ruth Yaron's book Super Baby Food, Dr. Green's Color In (as in White foods- out!), and some infant led weaning methods.

Also, our pediatrician shared right off the bat that the "old school" method of feeding was also out, that being thinned rice cereal first, then veggies, then fruits, all being bland and liquidy. I only did a week or two of straight purees, and then she preferred very soft little chunks.

 Dipping a raw carrot in mashed carrots

 She almost ALWAYS feeds herself left handed.

 Eggs or tofu, I can't tell...

 This was her first egg yolk from our chickens, I remember as it was outside on a beautiful morn.

 Lil lefty has always fed herself. She will eat from us feeding her but likes to be independent.

 plums and kale

 pureed greens over garden potatoes

 Garden peas steamed up. These 4 oz canning jars are her food jars. I bought 12 and they are amazing for travel, a quick nook in the micro, or freezing. LOVE them!

 Fresh plum off our tree.

 Plum chunks and raw oats sprinkled on for ease of picking up and a little more fuel.

 lotsa egg yolks and greens!

 Watermelon and potatoes

 Green cauliflower, pureed chard, and babara's brown rice puffs.

 Chugging some almond milk

 Green cauliflower is so great!

 Ara helped me eat 10 peaches in 3 days.

Beets!

My main feeding goals are for her to eat the same foods that we do, have a great variety of foods, and enjoy trying new foods. So far she meets all of those foods. I think the most important one is that she eats how we eat, and vice versa. I cooked her cauliflower, I had it for dinner too. She ate beets, I ate beets, I had lentils, she had lentils, and so on.

I think we all should eat more like how babies eat, or at least how Arabelle eats! Whole foods, very little if any packaged foods (the only ones I can think of are Barbara's brand cold cereal for a quick & clean snack).

Here is her food list of foods she has tried, and therefore liked! This is pretty much in order...
mama's milk
avocado
sweet potatoes
pears
apricots
prunes
whole milk yogurt (not very much or often)
brown rice grain
millet
oats
mango
papaya
winter squash
banana
cherries
tofu
cottage cheese
egg yolk
asparagus
artichoke
green beans
carrots
summer squash
potatoes
peas
grapes
peach
almonds
almond milk (homemade)
brewer's yeast
apple
cantaloupe
honeydew
kiwi
plums
watermelon
broccoli
fig
wheat germ (a few times)
lentils
mung beans
hemp seeds
cauliflower
beets
kale
turnips
parsley
chia seeds
blueberry
whole grain pasta (one night she wouldn't take any breast milk from bottle from Nana so she got Spaghetti noodles! Of course she loved them! That was her only time so far)
quinoa

Spices:
oregano
cumin
cinnamon
nutmeg
cardemom
chili powder
cilantro

She will eat 1/4 cup usually of any given food, possibly up to 1/2 cup depending on the meal.
Pretty sure that sums it up for now. I feel so blessed to have such a good eater. I know it can change but I am loving every minute of it. If you want to eat healthier, go off of this food list!! RD approved:).