Monday, April 26, 2010

memory lane

orion and i went to packard the other day to pick up his meds. i go about once a month, but the last 6 months or so, visitors under age 16 have not been allowed in (due to swine flu). we usually just go in, grab our stuff, then head out. since they have lifted that rule, we were able to go check out the train, one of orion's favorite things to see there.

a lot of memories came back to me that day. i have walked those halls so many times in my pajamas and socks with backback in tow of a change of clothes and toiletries to get showered/dressed in the parents' lounge. or sitting outside in front of the water fountain in the garden just to get a breath of fresh air or to cry by myself. time is going by so fast and i know we will be doing this again in no time.

in march of 2008, we were told orion's artificial valve will last 5-10 years. two years have already gone by, so now we are down to 3-8 years. i can't imagine him being a big kid and going through surgery. i wonder what the technology will be like then.

orion has an echo in a few weeks. we always pray things have been unchanged. when we look at him now, we don't see any "problems". he still gets winded easily (about 30 minutes of active play) and when he is sick or cold, his face turns a little bluer. we haven't experienced anything serious like we did when he was an infant. these days, he is pretty much living the life of a typical preschooler :)

speaking of typical preschooler! i signed him up for a gymnastics class, thinking he would be ok by now. flu season is over, hopefully he will get something good out of a physical class. well, he got a cold from it! 30 minutes of being in an indoor gym and he's been sick for almost a week. he was doing pretty good the last few weeks being illness-free, but i guess he is just not ready for indoor group activities. we missed a trip to socal for a wedding since orion was sick, and we are also missing his second class of gymnastics. his pediatrician's gonna kill me :) she suggested i sign him up for an art or music class in the summer, i guess i did this too soon.

this also makes me question if he will be ready for preschool. WHO KNOWS. i wonder if i should just try it anyway? he has got to get his little body ready to tackle all the illnesses that will be in regular school right? i guess this is why a lot of parents homeschool their heart babies.

does anyone out there have suggestions on preparing their special needs kids for school???

Tuesday, April 20, 2010

Heart Homies

This is a repost from Moriah's blog. Reading it brought back a lot of feelings of fear, hope, and love.

Recently, we've had several of our heart friends going through some trials or those who will be facing them soon (i.e. upcoming surgeries). I thought I would share who they are so that you could love on them, pray, and/or support them in any way you like...just as you have done for us. "Blog world" is such a special community, being a place where we can all come together and rally behind one another.

Reagan Williams - will be having major open heart surgery


Miracle Mason - just had a heart transplant but is now facing complications
Photobucket

Callie Carver - just had a major open heart surgery and is in recovery


Owen Simmons - will be listed for a heart transplant
Owen's Button

Callie Stapp - will be having major open heart surgery


All these families (with the exception of Mason because he was there after us) are those who we spent time with at LPCH and the Ronald McDonald House. Each of these children have flown or driven with their families from across the country just to be at LPCH. They are away from family and friends, and the comfort of being close to home. We are praying for their strength, peace, and comfort as well as guidance and wisdom for their nurses and doctors in the CVICU...

Please feel free to list any more children in the comment section who might be in need of prayer and support right now too.
Lots of love,
the Nelsons

Tuesday, April 13, 2010

she & him

orion and i can't stop listening to this album!!!

the best yet the worst

i'm talking about where we live. our apt complex is made up of five separate buildings. i like our building the best because it is very small and has a nice large courtyard that makes you feel like you're living in a home with a front yard. it doesn't feel like a dorm hall and the majority of people that live in this building are families with young kids or working professionals (i.e. no noisy students!).

our building is the worst because its foundation is literally rotten. i've seen it. the wood is BLACK. mold. nasty. they started construction last year to investigate. they took out pieces of the wall to test materials. that itself was already noisy, messy, but bearable.

last month, we got a letter posted on our front door stating construction will begin in april and will last until august. residents will NOT have access to our building monday through friday, 830-430pm. it also states if we are staying home due to a medical condition and must exit our home at some point in the day, we would have to call the leasing office to schedule an appointment so a safe pathway can be made.

are you kidding me???!!!???!!!

it is so obvious that if it is so unsafe to be home during construction, they should not even be doing construction in the first place while there are tenants! there is really no option to move to another building since all the units are occupied, and with the price we are paying, it is not worth looking at moving since it is so expensive out there.

at the same time, it could be jeopardizing our health. think of all the dust, chemicals, toxins that will be airborne. obviously, if we stay home, i will be keeping all the windows shut, but that doesn't mean it will not enter our home. also consider the noise! how could orion ever nap? if we were to leave for the day, we'd have to leave before 830 and not come home until 430. where is he supposed to nap? am i supposed to pack breakfast, lunch, snacks, medicine, change of clothes, etc etc etc etc?

construction begins this monday. orion's gymnastics class also begins monday at 1030. bo's mom is coming that sunday before. monday is going to be an interesting day of wandering around town!

if the construction seems unbearable, we will consider moving. we had already started looking at renting a house after we received this letter, but we wanted to wait it out and see how bad this construction will be. let's hope it isn't miserable and orion and i will survive being stuck at home for the whole summer! i suppose i can look at this way: i can potty train him knowing we won't be going anywhere :)

Wednesday, April 07, 2010

bo's feeling better

after seeing his rheumatologist and treating his sickness as a flare, he's gotten so much better. his CT scan came back clear and with his new dosage of meds, he is feeling back to normal. he says it was probably pleural effusion. but we are all glad he is feeling better and getting back to his normal routine. he is just following up with the doctor again in a month and hopefully he is back on track.

he has been pretty busy with work (what else is new?) but even more so since he does not have help with his regular freelance work. i've been looking into preschools for orion so when he is there, i can help out with work. we shall see....

orion won't stop growing!



he is getting so tall. i just bought some new clothes for him because he is finally outgrowing his 3Ts! he's filling into his size 6 converses now, so i bought a couple new pairs of shoes to wear when he can't fit into his red cons anymore. i also bought a 4T hoodie and a couple 5T jackets. his current clothes are getting short on him, though the rest of him fit fine in it. he's growing!! we are so happy. last weight check he was at 25 lbs and something oz. the oz seem to fluctuate since he's been going through sickness spats, but overall at a good weight and almost making it on the charts!

he is still eating pretty good. though he is not a breakfast person, he is getting some good meals in him like brown rice, pastas, chicken, pork, tofu, and soups. he is definitely a fruit guy and goes through boxes of blueberries per sitting. i've just recently started buying the giant $10 box of berries just to make it through a few days! he is also trying new vegetables. he typically only eats it if it's all mixed up in soup, but lately he's been adventurous enough to try raw carrot sticks. he loves picking out vegetables at the market but isn't ready to try them when we get home. at least he is semi-interested :)

lately it's been really tough getting him to sit at the table and just have a meal! since he stopped sitting in a high chair about a year ago, he just runs all over the place and i'm following him around with a bowl and spoon trying to feed him. after months of this, it's really tiring and annoying to chase him around (though i am happy to see his little legs working and being so active)! but seriously, i can't really complain about anything, orion has been growing so well and learning so many new things and physically doing amazing. it's exactly what we like to see!