Sunday, June 28, 2009
We all went to church today. The sermon was great. It was on James 3:13-16 and was about wisdom. Here's one thing Todd said, "Wisdom is not understanding all that is going on. Wisdom is making good decisions as life is thrown at you." I've been trying to understand the why's of everything that has happened. I still can't make sense of it. I know that I need to just continue on and focus on making good decisions now. Sometimes it's hard though. His sermon gave me some things to ponder and implement.
I can't tell you how palpable the relief is in this house. Things were so tense and uncertain before the procedure. We weren't sure if it would work or if we would be looking at an open heart surgery sometime in the near future. And there are always risks with any procedure. The kids were pretty wound up about it, especially Maddie. Greg was very concerned. It's just been so nice to have this issue behind us, and I've been feeling better emotionally since it's over. Greg has, too.
One thing I'm going to miss are the amazing meals my friends cooked, though. I can't, in good conscious, "milk" this anymore... sigh. My children are going to have higher expectations of me this week. Every night at the table, the kids had nice compliments to say about the food and the person/people who prepared it. My favorite/funny comment was from the Chlo, of course. She said, "Ms. Gaynell is da best cook in da evah." We got a bunch of groceries at the big W. Maybe I can win them back over with my "famous" spaghetti. That's the dish they all like the best of mine. My secret? Prego from a jar - pour into 1 pound cooked hamburger meat. I don't know what happened in my family. The good-cook gene was passed on to my brother instead of me. That is so not fair.
Thanks for all your prayers. Love you all, jc
Ok, I can't figure out how to rotate this image from my phone, but you can read the writing better this direction anyway. She was playing outside with Carter and Kirk without shoes on and her feet were black. Dianna (Kirk's mom, my friend) gave me the idea to do this to her feet. She giggled the whole time I was "writing" on her feet.
Here are the kids playing yesterday. Kirk dressed up, the girls put on their army shirts, and C-man just stayed in his regular clothes. The girls came into the kitchen with blue sparkly stuff under their eyes before they went outside. I asked Maddie what it was. Want to take a guess? Nailpolish. I let her know that taking it off would be stinky and the fumes might hurt their eyes and noses. Then I dismissed them outside - that was dealt with later. They played for quite a while and had fun. The polish came off without many complaints, but that will probably be the last time they decide to do that. It does look pretty cute, though.
Ok, the ice cream pics need an explanation. We've been to the big W and I did alot of shopping. The ice cream bars the kids have were free - I had some good coupons. The Starbucks ice cream I have - caramel macchiato - is yummy and was only around 45 cents from a coupon in last Sunday's paper. So, we sat outside this evening and had some ice cream. The "cool front" that came in left the temperature in the low 90's today, and after the 100+ weather the past several day, it felt pretty pleasant outside this evening. I just had to brag a little about my deals :)
Chloe continues to take care of her baby. She puts clothes on it in the morning and changes it's diaper and puts jammies on it at night. She talks baby talk to it and talks to us about it all the time. Sometimes baby is a girl and sometimes it's a boy. Baby is usually just baby, but sometimes its name changes. Baby has been in the hospital and was very sick, "but she got betta. She not die." She'll bring up the times that baby had the yellow thing in her nose (Mav had a yellow feeding tube in his nose). The other day she said, "My baby was all ova me in da bed last night." I think she's heard that line from me - she still sleeps with us sometimes. Here's a funny story about "baby" from a few weeks ago. We were at Walmart getting some groceries and baby had to go with us. Baby had clothes and a hat on and had to sit in the front of the cart I was pushing. I had some coupons and stuff sitting on baby's lap and baby was laying back and to the side with it's head kind of out of the cart. A woman walked by us on the toothpaste aisle and I saw her out of the corner of my eye. She did a double take and I heard her gasp. I looked up at her and she was looking at baby and then at me. I had to show her that baby wasn't real and explain that she has to go with us everywhere. We both got a good laugh out of it.
Wednesday, June 24, 2009
2-24-09: Greg carried Mav out of the hospital to the funeral home car wrapped in the silky blanket I always held him in. He felt so honored to be able to do that. He took this picture of him after he placed him in the carseat. He loves this picture and says it's the most peaceful he's seen him. I have a harder time looking at it. It just brings back all the preceeding moments to me. Either way you look at it, though, he is beautiful.
Tuesday, June 23, 2009
Dovie and I turned the corner to the waiting room at the hospital and were greeted by Maddie's ear to ear smile. She was so very happy and ran straight at us yelling and jumping up and down exclaiming "It worked! "It worked!". Needless to say everyone was relived and happy at the same time. I have no fancy medical terms for what actually took place (I'll leave that to the experts)....but I can report that "IT WORKED!). Juli was was recuperating and in great spirits when I left the hospital around 3. They were about to move her to her own hospital room were she will likely be at least until tomorrow.
I know that the family thanks you so much for all your prayers and covets your continued prayers as Jules recoups. I did not get to see Juli and Greg before the operation but I am guessing it was pretty bittersweet to be in the same place they said goodbye to their baby boy Maverick only 4 months ago....especially in light of the circumstances that brought them there. After all, had it not been for precious baby Maverick...Juli might not have learned of her heart issues.
I'll keep you updated as I hear more!
Monday, June 22, 2009
We took this pic yesterday at Greg's sister's house. This is Greg's dad. We saw my dad in the early afternoon and his later in the afternoon. We went to the cemetery to Mav's grave after we left from seeing Greg's family. Father's Day wasn't easy for any of us - especially Greg. We're thankful to have both our dad's still here and they are wonderful, but there was still a void. There always will be.
My mom and Brown came into Shawnee yesterday evening. They're staying here for a few days due to the procedure. It's tomorrow @ Children's. I'm hoping all will go well. It should start around 10:30 - if the procedure before me is on time. You know how hospital time works. It could be 3:00pm before I go in - we'll see. I'll have someone update the blog when it's finished. If it works, I'll spend the night at Presby tower. If not, I'll be home in the evening. I'm a bit apprehensive about all this. I'm not really worried about anything going wrong, but I'm nervous about going back into Children's. I haven't been back since Mav died. One of my Mediflight friends now works in the cath lab at Children's, so it will be nice to have someone I know well there.
When my dad came over on Sunday he asked about the procedure and how it worked. I started to explain it and Greg said, "Why don't you pull up a video on the computer?" Brilliant idea. Dad said it helped him understand it a lot better. I'm posting a link below for anyone else who's curious how it works. I may not have the exact same device, but the concept is the same.
Well, enough for now. I need to go pack my bag. Say some extra prayers. Love you all, jc
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julesclarko has shared a video with you on YouTube:
Here's the youtube link for the video.
A detailed account of an intricate pediatric cardiology procedure successfully performed at MassGeneral hospital for Children.
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Thursday, June 18, 2009
I finally uploaded the pictures. As you can see, the kids had a great time last weekend. That's about all we did was swim and sit out by the pool. They had movies after dark on a big outdoor screen that we watched as well.
Monday, June 15, 2009
We all got out of town this weekend and went to a town in SE Oklahoma called Durant. Greg found a hotel online that is associated with a casino there and it had a wonderful pool. It's only a two hour drive from here and we have friends in Durant, so it was a nice quick trip and we were able to see some friends we haven't seen in awhile.
This pic is of Greg and the kids in front of a place you would never go without a recommendation. Seriously, as you can see, it doesn't look like the best place to eat. My grandparents used to live at Lake Texoma (by Durant) and we would frequent Windy's when we went to visit them. They have great catfish. The ambiance is a bit to be desired, though. We encountered a rather round man with a very loud burp at a table close-by. Maddie said it made her lose her appetite and took her food back to the hotel in a to-go box. It was pretty disgusting. Anyway, the fish was still as good as ever and I love the green tomato relish - I think it's a southern thing.
Most of the time we stayed at the hotel pool and took in some sun. Those pics are on the camera, so I'll post them tomorrow. We really had a good time. I wasn't quite ready to come home.
Not much else new going on. My procedure is still scheduled for next week. We met with Dr. Sperrazza last week and he seemed pretty positive about the procedure. He's going to try the Amplatzer device and the Helex if needed. Hopefully one of them will work. He answered all my questions, and we feel pretty good about it. Dr. Ward will be in on the procedure as well - I'm glad.
I'll write more tomorrow. I'm going to try to get to bed somewhat early tonight. Love you all, jc
Sunday, June 14, 2009
Monday, June 8, 2009
Just an FYI - if any of you living in the Shawnee area have old shoes lying around that your kiddos have outgrown, the Hope House needs them. My friend, Dovie, took some things by there today and they said they really need shoes. They have been filled to capacity this summer. For you all not from Shawnee, the Hope House is a temporary place for kids to stay when they're taken into custody due to parental issues. They're there until they're placed into foster care. If you need more info, just let me know.
Friday, June 5, 2009
Here's a picture of Maddie showing off the clean fridge "Vanna style." That was our excitement for the day.Monday, Carter had a baseball game and if I can just brag a little, he had two home-runs! Here's the little guy at the game. If you notice, his hair is now short. He wanted to get it cut. He looks very handsome with it short, but I miss the long hair. I think it's just a "mom thing."
Wednesday Maddie went with a friend to a thrift store to find some cool stuff for the theme nights at Falls Creek (church camp). Carter had a friend over and Chloe followed them around. Wednesday night Sonic had free rootbeer floats, so that's where we went. The pic is of the kids enjoying them - Greg and I did, too!
Maddie leaves for camp week after next if she doesn't change her mind. She has been very hesitant about going because my procedure is the week after she gets back. She's scared something will happen to me and she'll wish she would've spent more time with me. I think it's horrible that a twelve-year-old even has thoughts like that. What do we tell her? We've told her that things should go well; however, there are always risks to any procedure. She knows that her great-grandmother coded (went into cardiac arrest) during a "routine" heart cath the month before Maverick was born. They got her back and she's fine now, but with that and Maverick as a reference point, I can see why she's concerned. I've told her I want her to enjoy her summer. If she wants to go, then she should go. If she wants to stay home, that's fine, too.
Back to Wednesday, it was a strange day for me. It was the first day since Mav passed away that I didn't cry. I know it probably sounds weird, but it makes me tear up just thinking about it. As I've become connected with the blog world of other heart moms, I've come to realize that even if he had sailed through the first surgery without any problems that wouldn't have been a guarantee of a long happy life. One sweet heart boy died last week at two years old. He awoke in the night and didn't feel well and passed away at the hospital. Another little heart warrior who was seven lost his battle recently from complications of PLE (protein-losing enteropathy - one of the complications Mav had). With congenital heart defects, you don't have any guarantees. Really, with life in general, you don't have any guarantees. My heart and prayers go out for those families. I know how tremendous their losses are.
We got the results back from Greg's stress test, and everything looks good. That is a big relief. He's in OKC tonight at a sleep lab getting set-up for CPAP. He has sleep apnea that was found at his sleep study on Sunday night. Hopefully he'll feel like a new man when he comes home tomorrow after sleeping with the CPAP. He's been so tired lately, but we're thankful his back hasn't been bothering him much.
Yesterday morning we went to the "Summer Movie" deal in Bricktown - i.e. cheap movies for kids during the summer. Last night we went to the musical, "Oliver" at Shawnee Little Theater. It was great. The kids loved it. We know several of the people in it. Our friend, Amy, and her sons, Logan and Caleb, did a wonderful job. Amy even did a perfect cartwheel. We had to "whoop" for her after it.
After we got home last night, Carter ran into the kitchen yelling, "HEY, SHE JUST BIT MY LIPSTICK!" I just cracked up. Just what a momma wants to hear from her son. He got some new flavored chapstick and Chloe found it. Sure enough, there were bite marks on it, and she still had the evidence in her mouth. Carter was not happy.
Here's a funny Chloe story. She was laying in our bed the other night and I was scratching her legs. She likes to be gently scratched when she's going to sleep. I usually scratch her back or tummy, but I was reading and her legs were easier to reach. She said, "Mom, wook, I have spwinkles." She pointed to her legs. I told her those weren't sprinkles, they were goose bumps. She looked at me and tilted her head to the side and repeated, "Goose Bumps" like she was letting those words really sink in. While this conversation was taking place, her goose bumps went away. When she realized it she said, "Do it again!" I did and then she asked, "What they called?" I thought it was so cute.
I've been thinking about NP school this week and am trying to decide how to do it. They offer a full-time program and a part-time program. They do not recommend the full-time program if you are working at all or if you have any other obligations. I think my family might count as the latter. I don't want to miss out on everything for a little over a year. So, I've sent the school an email asking if someone who has finished the full-time schedule would contact me. I think it might be helpful to ask someone who's been through it what their thoughts are. We will see what kind of response I get. I'm looking forward to school - no matter which way.
Well, enough for now. I'm going to bed. Love you all, jc