I am officially a slacker!! I haven't updated this in over a month- and yet there has been so much that's happened for all of us!
Unfortunately, Grace is sick AGAIN! We had a tiny cold at the end of November, but it's back again. We saw Pulmonology last week about it. They're not too worried (Grace has asthma & BPD), the mucus is clear, and she doesn't seem too lethargic because of it all. Unfortunately for us, Grace can't cough or blow her nose, so we're in constant puke-fest... I think I've gone through 3 shirts already today and it's barely 9 am.... ah, the life. :)
Christmas is OBSCENE this year! Grace is just barely 1, yet the tree is filled, and overflowing with gifts for her. I think we'll have almost enough toys to play with only 1 every day of the year (not quite, but you get the idea...) We were invited to a "heart kids" party at the Athertons. What a wonderful way to meet other heart moms and kiddos! We had a blast, and enjoyed chatting with many familiar faces, and new ones too! Grace was a bit unsure of Santa, but he was so calm with her- such a blessing! We found out after the photos, that Santa was the same Santa that saw her last year. Basically, Grace was too sick with NEC to be photographed with Santa last Christmas. My primary nurse was upset that Grace didn't get any pictures, and asked Santa (a nurse at the hospital) to come back especially for Grace. I have the best photos of him in a red polo shirt, taking pictures with my newborn Gracie in a stocking. So sweet! To realize it was the same Santa- that was amazing! He met our Grace at a time we weren't sure she'd make it. I think he was just as surprised at her health and growth as we have been. Grace was spoiled at the party too! A full stocking of toys and bubbles, a snow hat, candy... the list goes on and on!
The snow hat is going to come in handy. We're taking our first family plane ride this coming week, leaving December 30th. We'll be flying to Milwaukee, Wisconsin to see my dad, step-mom, siblings and all of their children. I haven't been "home" in over 9 years, so it's about time! I'm looking forward to Grace meeting her cousins and spending some time with Papa & Grandma. Of course, I'm expecting more spoiling to continue... :)
Grace is finally sitting up all on her own- completely unsupported! She can play for hours just sitting up. It's wonderful! We're working on crawling still. She doesn't LOVE tummy time, probably because of the G tube, but she allows us to place her in the crawl position. She just doesn't know what to do from that point. :) She looks more and more like a toddler every day, I'm amazed. It truly is going by WAY too fast.
Grace is still on the viagra for her heart pressures. We'll know soon if it's enough or not. We see Cardiac on the 30th, minutes before leaving for the airport. Her asthma is under control. Knock on wood, we haven't had to use her rescue inhaler or her prednisilone. GI... well, that's a WHOLE 'nother story. She's still puking, but the rinitidine and prevacid don't seem to be making that big a difference. I refuse to do the fundlipication (spelling?) where they wrap a portion of her stomach around her esophagus to prevent her from puking... EVER. That might be great for some kids, but I don't think Grace will be a puker forever. It seems like with her G tube and then when her heart has higher pressures or is working harder, she'll puke. Hopefully it's a temporary problem until she grows taller- stretching the length between stomach and esophagus. Speaking of tall- Grace is 2 feet 4 inches!! Can you believe it?!? That's almost half my height! She's 17 pounds and growing, so we're getting there.
I find myself thinking about the future lots these days. I have a lot of worries about staying here in Arizona long-term. We came here for a job relocation, with a 5 year plan. Neither of us work for the company any longer, and it's been exactly 5 years. I have some friends that work in the school systems (names not mentioned to protect the innocent) who have jokingly/not so jokingly told me to move before Grace gets to kindergarten. The schools here- well, let's just say they're not exactly blue ribbon. Also, the heat! Gosh, the heat! Her poor heart- I can only imagine that playing hard with her friends will be tiring, but adding the heat to that combination... Yowzers! Maybe I'm irrational, but I watch the news and they label Phoenix as the #1 kidnapping place in the entire US. If that's not every parents worst nightmare, what is? It's very frustrating... Felix and I loved how we grew up, and we want to give Grace that same opportunity. Unfortunately, they are VERY different upbringings! I grew up outside of San Francisco, spending most weekends at a museum, or China town, or the theatre. I want my daughter to have cultural opportunities- there is a serious lack of that here in Phoenix. Felix grew up in Jackson Hole, Wyoming. He wants the small town feel for Grace. One where the neighbors know each other, the town goes to the high school football games... I get that. So, can't we leave in a suburb of a major city? One would say, you are.. now. You live in Surprise, a suburb of Phoenix. Yes, true. But, Surprise is the same home after the same home- with no character, history, and bad schools. And Phoenix, not exactly the most cultural place I've been to. Then I start to worry about heart transplant. Apparently, Grace may need to be a candidate here in the next 15 years. Yes, I know that's a long time, but I'd rather be prepared for the worst. Grace has been ANYTHING but normal throughout all of her hospitalizations... Sadly, we owe WAY too much on our home. And, honestly, I can't see us recouping a good portion of it in the next 20 years. So, we either rent it out, and eat the rest each month, or we short sale and walk away, or we stay put, and keep thinking... What to do, what to do?
I keep reading about the best cardiac facilities in the US, and Phx Children's is NEVER on the list. Granted, it's a small hospital, and will probably be on the list at sometime in the future with the major expansion, but it's still not a transplant center. So, we've looked at Seattle (too rainy), Salt Lake City, Denver, Milwaukee, Ann Arbor, Los Angeles (too Los Angeles), San Francisco (too expensive!), Houston (too wet and humid, and well, Houston!), Nashville, Altanta (too, I don't know, HOT!), Raleigh, Boston (too much snow!).... UGH!
Anyways, that's a day in the life of us. We're crazy, busy, boring, tired, energetic, loving, annoyed. :) A day in the life...