Wednesday, November 18, 2009


Okay, I am officially the world's greatest slacker! This blog hasn't been updated in FOREVER! I find less and less time to do things (chores, shopping, reading, surfing the net) so I just do nothing when we're home. :)

We are in the midst of a very packed schedule, filled with therapy and appointments. As you know, Grace's 1st birthday is right around the corner, so all of those random specialists we saw in the NICU want to follow up with her..... that means we get to see the eye doctor, the geneticist, the neuro doc... such great times! Add to that the normal cardiac follow ups, GI and nutrition follow ups, pulmonology follow ups, developmental pediatric appts, pediatrician appts, etc. and we're exhausted! But wait, there's more!! We also have home physical therapy on Mondays, speech therapy downtown on Tuesdays, physical therapy @ Tbird Hospital and speech therapy at home on Wednesdays, Early Intervention at home on Thursdays, and occupational therapy @ Phx Children's on Fridays. But wait, there's even more!! Admit it, at this point you're super jealous and wish you could be me, right? right? Now Phoenix Children's is wanting to do intensive speech/feed therapy... wait for it.... 3, yes three!! times per week. Eventually I may just give up personal hygiene all together, and just become "that" mom. What a schedule!! It's sad that my fantasies these days consist of playing hooky from appointments or sleeping.

Okay, I'm off that soap box. Grace's cardiac follow-up didn't go as well as we hoped. It could have been so much worse, but it means we'll be followed each month again, instead of every 3 or 6 months. The pressures are still really elevated on the right side of her heart, causing the heart to grow only on that side. Instead of one "color" of blood on the EKHO, you can see the blood shunting back into the arteries, because the pressure won't allow proper blood flow. Grace is officially on Viagra now. Crazy, right? Apparently Viagra's original use was for heart problems. I wonder how they found that well known "side effect"?!?

Grace is able to tolerate food being around her! She's been found playing with food, even tasting it. This is progress for us! I hope to be off the G tube by age 2. We'll see! She's really progressing in physical therapy too. Grace can sit on her own, as long as her hands are planted on the ground in front of her. Grace can also hold herself in the crawl position, but can't quite seem to get herself in the position... still, progress! I'll take progress. :)

New Moon comes in 1 day!!! I'm such a geek for that series, but my friend Blair puts me to shame. She knows every nuance of the series, book, actors, etc. We're going to the midnight showing here in Surprise, hoping to meet Kiowa (the wolf pack member) and winning some cool prizes. We decorated our own t-shirts. They're actually really cute, and don't seem all that cheesy. I can hardly wait!! Not sure I can stay up until 3 am, but I'll make every darn effort.

Grace's birthday invitations turned out so stinkin' cute! I embossed silver snowflakes on white card stock, then placed that on silver card stock, with a silvery-purple background. An adorable quote completed the invitation, of course! I've got a lollipop tree, a photo tree, a cocoa bar, time capsule.... I'm excited! Unfortunately, we've only got 1 RSVP! Oh well, if nothing else we'll stay germ-free and celebrate with our tiny family. I wanted to invite all of the other heart moms that I know, Owen's mom, Gabriella's mom, Scarlett's mom, and Ivana's mom, but I didn't want to spread any scary germs to them, or put them at risk. So, instead we're keeping it low-key, and if only 1 person shows up, so be it!

Felix and I have decided to be wild and crazy and take Grace to Disneyland over Thanksgiving. We haven't been in over 11 years (it was our first out of town trip together), so we're looking forward to it. I know she won't remember ANY of it, but the smiles and photos will be enough for us. I plan on carrying a jumbo hand sanitizer with me, and clorox wipes. Am I a freak, or what?!? I'll be sure to post pictures as soon as we get back. Hopefully we'll see some family while we're down there too.

Roxi is recovering from surgery... she was diagnosed with cancer. :( Roxi hated having the cone on her head, but she's a good pup and managed to handle it. She even let me take her stitches out! Good girl, Roxi!

I can't think of much else that is going on in our lifes- there's probably a ton I'm missing, but it's early, I'm tired, and I have to get Grace ready for therapies. Happy Turkey day to all of our friends and family! God Bless!!

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  1. You are so funny!! We started out the same as you.. therapies ALL week and Doctor's appointments around the clock. Thankfully, we have it slimmed down to Cardiology and Shots once a month. As far as therapies go.. you will get SO burned out. Over time I have let some of the therapies dwindle and Owen is SO much happier to just work with me at home. I'll email you about therapies today.

    Anyway... LOVE that you are going to Disney! We went last Dec and I got a pass to go to the handicapped entrance (since O. had O2). Let them know of Grace's condition and they should give you a pass. It gives you more time to get on the ride, avoid the germy lines and you can sanitize the ride too!

  2. We are still on the uphill of therapies. It started calm, 3 times a week at Banner. Now we are changing it all around to be similar to yours. Some home, some at Banner, some at PCH, evals for audio devices, etc etc etc. Big hugs. I was 'that mom' Tuesday and her speech therapist pointed out that I had no makeup on. NOT the best moment of my week!

    We will be at New Moon tomorrow night too, but in Gilbert! SO excited to get out! Then Paul and I are going again late Saturday night. The only time we get a date, and only because we LIVE with my mom now. LOL!

    Disneyland just installed sanitizers everywhere! I was SO excited to hear that! So on top of your big bottle, they will be everywhere too! LOL Check out my Disney planning blog. I'm obsessed.

    Thanks for the update! Cant wait to hang out sometime!!!

  3. I loved your update...I can totally relate on the crazy schedule and I told you tonight, I have turned down some therapies because we just can't take it. You need some down time too...and so do the kiddos.

    Have a super fun time at Disneyland and report every small thing back to me so I can plan for whenever we choose to go!

    Love ya!