Tuesday, November 24, 2009

Christmas and 1st Birthday Photos

Just procrastinating on packing.... I did Thanksgiving today and I am BEAT! I've been cooking since yesterday morning. Our day went from having 11 people, to just the 3 of us. It was a surprise, but because of sick people and germs, neccessary. It was actually very quaint. :)

Tomorrow is the House of Mouse! I'm starting to feel icky myself, so I've taken 6 Vitamin C pills, Zycam and going to bed in the hour.... let's hope that will keep the germs at bay!

Here's our photos from tonight- enjoy!

Happy Thanksgiving to all of you! Enjoy your families, and your blessings, and be safe!


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Sunday, November 22, 2009

Emotional Ups & Downs

Like most other heart moms that I know, my days are filled with emotional ups and downs. Most of the time I am able to remain fairly immune to it, only truly breaking down or getting overly ecstatic when the situation warrants it. Maybe this week was different?

Had a really hard time at PT @ Phx Children's. Our therapist is very sweet and did a wonderful job, but she mentioned she was fairly concerned about Grace's plagiocephely (flat head). This wasn't the first time we'd heard someone mention this- most agree that it's because of her multiple heart surgeries and prolonged hospital stays (NICU, PICU, etc.) that require her to be lying down. No one ever mentioned that they were overly concerned, most mentioned that they expected it would go away over time, with her spending more time in a seated position. However, the PT wasn't convinced. The PT advised me that I really should consider a DOC band- basically a helmet that Grace would wear for 23 hours a day, probably for 6 months. She reccomended that I call her pediatrician ASAP for a referral to Cranio-Tech @ Phx Children's and get her in. She explained that her sense of balance would be off, as her head is over the front of her spine entirely, and she would never fit into a standard bike helmet. Now, I'm pretty darn good about keeping my emotions in check until I get a chance to process the information. The car ride home was BRUTAL! I was bawling hysterically. I called the doctor for the referral, and my family, and my spouse. I can't explain this without sounding crass- so bare with me... Grace has been through a lot this year, yes? And you can imagine the questions that I get practically every day? They used to ask me if she was going to live, or if she was smart, now it's "Is she feeding on her own yet?" "Is she sitting up yet?" "She's walking, right?" UGHH!!! Enough!! I HATE, HATE, HATE those questions!! I know it's not my fault, but it makes me feel like an incompetent mother, like I'd prefer my kid just sit in a chair for the rest of her life. My mom tries to remind me that these people typically mean well, but that they don't have the experiences we've had, aka a heart baby. So, when I thought of one more thing- a very visual thing, the helmet, I lost it. I couldn't imagine keeping my poor little one in this helmet for 23 hours a day- sleeping, eating, etc. But, if it was going to help her, I was going to do it. Thankfully, my hubby asked me to call the pediatrician for a consult and referral. Turns out, the DOC band is typically most beneficial in 6 months and younger children- Grace is a year in 8 days! Also, the DOC band is PURELY cosmetic- there is not a true need for it, so long as no part of Grace's skull is pushing on any nerves (it's not). So, all those tears- unneccesary. Although, it is nice to get a good cry in every so often. I don't usually allow myself to really process my experiences. It's odd because people always comment how strong I am, but maybe it's really because I'm in denial? How's that for mentally healthy? HA!

Anyways, the rest of the week was WAY better. New Moon!! Woo-Woo! We had a fabulous time. We decorated my van (calling it the New Moon-ie Van), met Embry Call (Kiowa Gordon), won a trivia contest, got free loot, and saw the inside of a Embry's limo. After all that, we got to see the movie! The movie was much better than I expected, especially since the 1st was so terrible. I had a genuinely GREAT time, but was super exhausted the next morning. Life was rough that Friday.

Saturday evening we decorated for Christmas. Yes, it's early, but, we lost all of December, January and February of last year- living at Phx Children's. This year, we're having extra Christmas and loving it! Grace was even able to help put up some of the ornaments- she's such a big girl!

I can't believe she's going to be a year!! I have taken some time this week to look back on our year- she went from a 3 pound baby, to a big girl who has 2 teeth, can stay in the crawling position, and who laughs uncontrollably! I love her!!

Her birthday stuff is almost done- I'm excited to celebrate our year. It's been the best year of my life, but also the scariest- one I would never want to do over again, but if it meant receiving my blessing again, I'd sign up in a heartbeat.

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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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