Friday, July 2, 2010

what a day












































Yesterday was a crap day. Davy girl had a heart echo, it showed that her left artery is starting to thin. Once again things could be worse, but it would be nice to not have any of this at all. So for now things don't change that much. Just some more echos and they might put a balloon in her artery. The PDA and VSD are the same, not bigger not smaller. We are still shooting to fix everything at about 12 months. After our lovely cardio appointment I strolled on down to Davy's GI 's office. I needed to raise some heck. Davy has been out of one of her meds for a couple of days and not one person from that office can return a phone call. Seriously I even broke down crying on one message. So I walked in and demanded to be heard(take that GI!) 2 hours later........ I got Davy's prescription. By this point Davy was due to eat...so another traffic filled drive home on the 57 freeway with a crying baby. All I could think about was how nice it would be to take a hot bath and read why Jake broke up with Vienna.
I got home, fed Davy, tended to my other offspring and our electricity goes out. In fact over half our town 's electricity went out. I didn't think much of it at first, but then I realized joey doesn't have much battery life and Davy needs to start her all night continuous feed in a half an hour(time flies huh). OK, now what. Do we need to set up camp at my sisters house,buy a generator? Luckily after 30 minutes it came back on. But, wow it made me realize that I need to have an emergency plan....like now. I can't wait for disaster to strike. Scott and I definitely have to get some sort of game plan. Anyone have advice on how to be prepared for emergencies when you have a baby with special needs? I would love to hear some advice.
I will say my day ended on a good note. I saw a certain movie about a certain vampire with a bunch of lovely ladies.
Nothing like drowning your sorrows in a tub of popcorn and Diet coke.


P.s In case your wondering about Davys clothes. I've been revamping some of my boys old shirts to make them lady like for Davy. What do you think?


24 comments:

Amberly said...

I'm sorry about your bummer of a day. I had a crap day too, but it was nothing like yours. and I'm loving the clothes, her onsie is completely adorable.

Georgia said...

I'm sorry you had a crappy day Ruth. Keeping ya in my prayers.

Davy's clothes are darling.....very lady like : )

Petie said...

Love the "vamping up of the boy's t-shirts". The brown and gold look adorable on her. Kudos to you for straightening out the GI doctors. Do they learn "the not calling back" in med/nursing school? It use to drive me crazy. Happy 4th.

Reagan said...

i was just thinking about how cute that little gray and yellow number is on her! good job.

i got a sweet surprise today from you. you are the nicest! can't wait for the pip to watch it. thanks again!

rookie cookie said...

Oh yeah. What would you do in a disaster? You are definitely going to need a generator. Even if you never use it, knowing you have it will be comforting, like a warm blanket. Or a tub of popcorn and a diet coke. Take your pick.

Ethan takes a medication that is highly regulated and his doctor can't prescribe any extra than what Ethan needs each month, even in case of a disaster. It makes us so nervous to think about a natural disaster that would prevent him from getting medication. Maybe part of your emergency plan can be a stash of medication?

Damaris said...

I think her clothes looks awesome. Good job. I hope your weekend is better than your today.

Aboo10 said...

I think she always looks beautiful! And beautifully dressed. You too.

Aaron & Nicki Gregg said...

I just started reading your blog and I love it! Thank you so much for sharing your story with us. You asked us what we thought of your onsie additions and I want to say it was the first thing I noticed (after Davy...she is so adorable). I love, love, love the yellow roses on the brown onsie. You are one talented mama. I hope you get that bath and find out about Jake and Vienna. Take care.
Nicki
Portland, Oregon

shellybellylarson said...

I have a child with special needs.... this is what you need to do...go to your local fire department ...tell them about Davy, take medical info stating that she is on continuous feeding & has to have electricity at all times...they should have a form for you to fill out. If/when the power is out for more than say an hour or so, they will bring a generator.Also...in the event that there is ever a fire at your house ...God forbid...they will be aware that there is a special needs child that resides there.

I love her onsie...she looks beautiful !

hope this info helps !

shame on the GI doc/nurse for not getting your refill for so long ! Get your "mama fight" on...I'm sure you will be needing it again & again. Do y'all have any type of support groups in your area ? We attended Special Kids for years and it was a lifesaver !

big hugs...hang in there !

The Mortons said...

LOVE the flowers with the brown onsie. looks fab!

Lynda Halliger-Otvos said...

A generator has been a calming device for me for many years. It sits under the kitchen sink and looks so pretty, all red and shiny. We have a Honda EU2000 that cost less than a thousand dollars brand new and emanates peace of mind.

Upthread is a comment about your local fire dept-excellent idea if such a thing is available-wow that'd be perfect!

kristyn said...

Love the onesie and love that Jake and Vienna's shenanigans are the perfect way for you to unwind too.

As for the generator thing, you should talk to B. Berrett-- he might know a little something about emergency preparedness (and tent city scenarios).

Nicole said...

That little outfit is super adorable - even better to know it is a boy hand-me-down.

kimmomofeight said...

Davy's t-shirt is perfect (I actually thought that before I read that you made it; once I read that I was even more impressed...way to go :) stylish, environmentally perfect, frugal, and cuter than heck).

The GI office deserves a kick in the ass (ahem).

brooke said...

i LOVE that outfit. even before i read your comment about revamping. ADORABLE.

michelle said...

I am glad you got a reward at the end of that day! Love the darling clothes!

Jill Whyde Gibson said...

We have a special needs child and my dad fashioned a generator to our breaker box. Her entire room, plus our furnace blower (gas furnace, electric blower), and fridge all get power in the event of a power outage. The problem we saw with the fire department plan was if the outtage was part of a larger major emergency that required their attention. Just something to think about. It is great piece of mind.

Elizabeth Plock said...

My son was fed on a joey also through out the night. I had syringes ready incase we lost power. Generators are great too, but still need a back up if that quits on you! Wake up calls are always great reminders. And I think the stashing of meds is great-check expiration dates. Go mom, go!

Jocelyn said...

I found your blog thru Cjane!

I am all for preparedness. I would get a generator if you can. Check into the 3 way generator, 3 way you can use gasoline, propane and natural gas. Gasoline only stores well for 3 months then it starts to break down and is not as effective. Natural gas you can get plumbed into your home and you can use the natural gas that heats your home (if you get natural gas) Propane is always good! It never breaks down. No matter what you do, when you do get a generator, make sure you pay to have an electrician come in and put the electrical box in properly. If not and you try to rig something up and don't do it properly, you could be held responsible for any injuries/deaths. Our stake just did a huge preparedness fair in October.

I LOVE miss Davy's clothes! Way to recycle. She is such a princess. My daughter loves coming to your blog and looking at "the princess"

LAURA :) said...

i am amazed that you find time to make the cutest things for her.... high five on being proactive with those doctors.... keep the strength... ox :)

Stephanie said...

Your daughter is beautiful and I LOVE that onesie. My baby is a boy but I am still curious how you did that. (maybe there's one in MY future!) :)

Ma said...

Hey, you and I are leading parallel lives in a lot of ways.....our princess babies are surrounded by loving brothers (my Lily happens to have four big brothers) AND they both have had clefts....Lily had her cleft palate repaired a few times now...and they both have big special needs.....
Hugs, Sister...welcome to our little sorority called “Sisters in Chaos”.....it is a bumpy ride, but the scenery is great and heartbreaking....and great...and heartbreaking...and the best.
Hugs to you after your crappy day...I am beginning to think God really meant for all of the chocolate in the world to belong to us special needs mamas....I’m just sayin’......

Keiauni said...

The clothes are so CUTE, Ruth:)
Davy looks like a princess!
Sorry about the CRAP day!
I just wanted to say how proud it makes me, to hear how you advocate for your daughter.
YOU are AMAZING:)

Courtney said...

This family has a daughter with special needs (she needs breathing assistance and lots of other things):
www.gwendolynstrong.com

They managed to make an almost x-country RV trip with her! I'm sure they have posts about their preparations!