Monday, May 26, 2014

Well, that was easy.

Our little 14 month old, Miles, had his 9 month post open heart surgery cardiology appointment.

From start to finish, the appointment was 3 and a half hours. They take forever, but that is okay.
We check in, we head to floor 3 which is cardiology, fill out some update papers and wait. M is all over the waiting room and so excited to be running free. We get our little beeper and it goes off about 5 minutes after we sit down.

Start off in triage, where they do weight/height/pulse ox/blood pressure. Sometimes they do a mini EKG. We got to skip that this time. Then we head off to the exam room.

After the exam room, we head off to ECHO! Whoop! The tech asks if we want to strap his arms down and we deny that. She asks if we need to wrap them, we say maybe, but let's start off with not. We just plopped him down and pulled out our little bag of goodies to keep him busy.

ECHO starts and so far, so good. Lots of red & blue on the screen, you can see all four chambers, and that is as far as my expertise goes. Yup. I can't read ultrasounds well. Hence the reason why we never found out our babies' genders.

After a super long ECHO and all the toy "freshness" worn out, it is complete. Now we move back to the exam room and wait. And wait. And wait. Our cardiologist has to read the report and watch it just prior to coming in to speak with us.

Miles is climbing the walls, the chairs, under the table, under the desk, opens everything and scrapes his legs from falling over a million times. I never bring enough stuff to keep him busy.

Anyways, the card comes in and we chat. We get our questions sort of answered (we still see cyanosis and he sweats too much still). The answer is essentially that he will probably always do that since his heart is repaired and not 100% perfect. We can accept that and since we have a pulse ox at home--I'm cool with it. After the chat, he tells us to come back in a year! A YEAR!!! We get a full year before we have to return. This is HUGE in the heart world.

This is a quote from a mom on one of my heart boards~
"One of the surgical team explained it to us in terms of sewing. When you repair a shirt, patching the hole "fixes" it, but the very act of sewing on the patch also damages the shirt. You create stress points where the needle goes in and out and where the thread tugs on the cloth. You may say this is "as good as new", but it isn't because you have more risk later on. Risk from both the original hole and the repair work. Chances are good you'll never have problems, but you still have to watch out for it. Our son is doing very well, but a repair is not a cure. He will have to see a cardiologist for life."

Next up for me is to order his medical records. In full. Including the nurses reports.  I'm just in the part of our journey where I am ready to read about my son's battle with CHD.

Thursday, May 22, 2014

Our 2014 Summer Wish List

Our family makes one of these every year and we actually do most of the items on there except for summer 2013. We pretty much were in a health-safety bubble to keep baby M from getting ill before his first (and hopefully only) open heart surgery. He got the "OKAY" clearance from his cardiologist to start living life a bit more. We are grateful and very appreciative of this opportunity and chance at a somewhat normal life.

We aren't going to get to do ALL of these this summer, but we are going to attempt as many as possible. If it doesn't feel like a good idea, we'll scrap it. If it is a great idea, we'll go for it. I'm not a glutton for punishment, nor a complete crazy mom. I love the idea of a slow summer, but the reality is that I have 4 boys that can't be cooped up all day. Well, I could, but that means they would be behind a screen for a huge portion of the day and I don't really like that idea. Some are trips, some are at home activities, some are wishes, but they are all fun. The three older boys came up with many of them and I added a few in.  I bet you will be able to tell which ones are from me:) All the activities are designed for the Dallas/Fort Worth area.

  1. Devour an ice cream cone from Beth Marie's
  2. Go to the Dallas Zoo with our zoo pass and take the DART train in
  3. Build a sandcastle on the Isle du Bois at Lake Ray Roberts
  4. Have a round of golf AND rent a golf cart at Texas Woman's University's golf course
  5. Paint rocks for the courtyard
  6. Make homemade bubble solution and see who can make the biggest bubbles
  7. Make confetti eggs and smash them on each other at the park
  8. Make homemade lemonade
  9. Join the summer reading program at North Branch
  10. Join the Recycled summer reading program
  11. Finish the library program and go to the waterpark if they have that reward option
  12. Plant sunflower seeds
  13. Go on a scavenger hunt
  14. Take a night walk
  15. Make a hide-a-way in the bushes
  16. Pick a topic or activity from SCISTARTER and make it happen
  17. Visit Goat Man's Bridge but don't tell the kids the legend behind it.
  18. Walk over a $2.5 million  bridge
  19. Watch the airplanes take off and land at Founders' Plaza at DFW International Airport
  20. Make homemade ice cream
  21. Go peach picking
  22. Create an original oil panting
  23. Catch a fish
  24. Try ten different parks
  25. Go to the Dallas Arboretum in August (when there is a huge discount)
  26. Fireworks-go see and buy sparklers
  27. Enjoy a treat from Atomic Candy
  28. Listen to Twilight Tunes with a picnic dinner
  29. Color the boys' hair with temporary color or Kool-Aid
  30. Hit up happy hour at Sonic for a half price slushie
  31. Make s'mores over the fire pit
  32. Have a pajama day
  33. Be in the Yankee Doodle 4th of July parade (promote CHD awareness)
  34. Donate Day! (the big toy sort and donate them to an organization)
  35. Put together a puzzle
  36. Sew a tooth fairy tooth holder bag or a pillowcase for each boy
  37. ONE Screen Day (unlimited computer, t.v., Wii, or DSi) and Mom can't say turn it off until dinnertime
  38. ONE Screen FREE Day (no screens at all--even for Mom)
  39. Feed the stingray sharks
  40. Make treats for our local firefighter station
  41. Make treats for Daddy to take to work for the police station
  42. Have a movie day or night
  43. Go bowling
  44. Feed the ducks cracked corn (but not bread)
  45. Fly a kite
  46. Watch a sunset at the lake
  47. Watch a sunrise ** not to follow watch a sunset**
  48. Bring back the roller skating memories
  49. Go backyard camping (or if we are brave, lakeside camping)
  50. Write a letter to a friend **an actual handwritten letter with a stamp**
  51. Walk the dogs
  52. Have a "be afraid" dinner night where mom picks weird and crazy foods to eat.
  53. Make a pool noodle marble run
  54. Dye eggs since we never do it at Easter
  55. Tie Dye a t-shirt
  56. Eat a watermelon and have a seed spitting contest
  57. Make homemade milk shakes
  58. Make popsicles to eat
  59. Make ice chalk
  60. Skip rocks
  61. Take family pictures
  62. Make a dough-handprint design and bake it
  63. Have a recycled art project
  64. Play Bocce ball
  65. Destroy and remove the old playground set in the backyard *I think it can be scrap recycled*
  66. Go on a day trip without saying where we are going
  67. Have a water balloon fight
  68. Make something out of paper maiche
  69. Attempt to geo cache a hidden treasure
  70. Go to the Geometric Art Museum in Dallas
  71. Try to go to Fantasy Landing
  72. Attempt to go to Fountain Palace
  73. Use our free ticket to the Perot Museum and take the DART train in
  74. Check out Klyde Warren Park
  75. Buy a I "heart" Denton bumper sticker
  76. Go to the Denton Community Market
  77. Make a watermelon cake
  78. Visit the botanical garden in Grapevine
  79. Champion's Days try to attend at least one
  80. Sew 3 Christmas stockings **already have the stockings, but need to actually sew them**
  81. Celebrate Miles' 1st Heart-iversary 8/22
  82. Celebrate 20 years of marriage to my love
  83. Make a school scrapbook album for boys 2, 3, and 4 (similar to boy 1's)
  84. Finalize school registration for boys 1 and 2
  85. Buy school supplies for preschool, 2nd grade, and 8th grade!
And, sorry that there isn't a super cute photo to go along with the post. Blogger wouldn't let me upload anything tonight.