I have always been cautious about things...I like to research and be assured things are "safe" before I do them. I also am highly competitive so "trying" things that I perceive I won't be the best at isn't really my style. I'm also a worrier. Not that any of this surprises anyone. It is a constant battle Satan plays with me, I know it, but still many times he gets the best of me. I decided after this last trip it might be worth reviewing a few things I am fearful of..
white water rafting..we went to Canada a few years back and I was part of a white water rafting experience. let's just say while I survived it wouldn't be the first thing I'd run back to do. Believe the guide when they tell you the water is arctic cold and will paralyze your throat if you swallow it. note to self, sit behind larger people as they block the wall of water that comes at you. Do not sit in front of boat, do not wear contact lenses even if you are blind like I am. I can check it off the bucket list though..
I hate boats. I get motion sickness and I can think of nothing worse than being stuck on a boat. The thought of a cruise terrifies me.
I also hate small spaces. I can convince myself that an elevator is too small sometimes.
I am afraid of heights. I'm OK flying since we fly so often, but I don't like watching from the window down, I usually draw the shade if i have a window seat.
I don't like riding jet skis behind my precious hubby at 60miles an hour on choppy water.
I love animals, but prefer to touch them at Sea World where they do not have their parts intact. In Cayman, the big thing is to go to Stingray Island and pet the stingrays. As you will see I did venture out and touch the stingrays, but the motivating factor was the anchored boat which was rocking so bad back and forth it was sickening. This was an experience like no other, these things come at you like sharks in the water. Frightening! The men seemed much braver for some reason, check out my hubby, the stingrays get excited and flop all over you...I had the guide hold the stingray. Yes, they feel like a squishy mushroom.
Snorkeling - we hadn't done this since our honeymoon 18 years ago. We started at the beach and the reefs and fish were amazing. At the beach all I could hear was my breathing, sounded like Darth Vader. Then out in open water which was even better. I learned that a lifejacket makes the experience so much better. I have new appreciation for the swimming skills my kids have. I learned that as much as I run and workout, I have no swimming skills.
But, there is value in conquering your fears. I am fearful of a lot with Parker and all my kids. What I learned was even though my heart was racing and so was my mind, "what happens if i get stung? what happens if I drown? worse, what happens if I die?" that as I continued to pray and repeat "God has not given me the spirit of fear, but of love, power, and a sound mind.." once I relaxed and completed the task it didn't seem so frightening. People always say the fear of the unknown is the worst. Once you have experienced something it doesn't seem so bad.
So, what is the point of all this? I guess it is a reminder for me, life was scary when we learned of Parker's dx and of course his heart surgery. Today while lots of things are unknown and still scary, I have learned that God's grace gets us through.
The fact that I posted pictures of me in a swimsuit is terrifying too, hoping everyone can see past that and the beauty of God's creation! XO
"Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won't lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” Matthew 11:29-30 (MSG)
Our favorite game...Parker LOVES to play "chase" with anyone whose up for the challenge. It can be pets or people, Parker isn't picky.. It started as crawling (round and round in circles all over the house) and has moved to push toys. The speed with which he goes is so fun to watch although radical on the hard woods, but we figure it helps with balance if nothing else. The pure joy and belly laughing that takes place during this time will cure any and all "ills." His therapist let us borrow one of her "walkers" she uses with him to practice at home. It is made so they don't have anything in front of them when walking, supposed to have arms resting on the siderails although you can see Parker uses it all different ways. I am sure I am violating one of the biggest ND "no-no's" here by using the walker some, but encouraging those feet to make steps has to count for something.
Mike and I just returned from a fantastic adult only trip to Grand Cayman. Snorkeling, swimming with stingrays, sun and fun. The last few months have had so many trips for us and we feel so blessed. This rest of this year may be long, we have gotten used to a few trips a month!
I signed Parker up for preschool last week, we are thinking 2 days a week at the church preschool starting in the fall might do everyone some good. I had to swallow my pride, they want to put him in a class with kids about 6months or so younger. My initial reaction to this is always "NO," but he is so small everyone worries about him getting hurt. So, for now, I will pray for peace about it and pray that over the summer he has some kind of amazing growth spurt. HA! For some reason this seems like admitting "failure" if that makes sense? Clearly he's behind (he's not walking for goodness sake and he's 20months!), but it just seems more "real" if that makes sense when school starts coming. I know we have years to fight this fight, but I was hoping it wouldn't start this soon. But, I know God has a plan and I have to trust in him!
seriously overdue update coming..life is on fast forward (what else is new?) most importantly we just returned from Disneyworld!! Parker was a magnet to any and all people and Disney characters. He enjoyed the trip so much and was so taken with the characters! We took 1200 pictures, we will spare you most of them, LOL. He's been to WDW 2x's in his less than 2 years of life. WOW!!!
Now, the medical updates..
Chicago Endo visit was good, got snow even although this last few days in TX have felt like Chicago! results are back..Parker's thyroid meds were too high, suppressed his thyroid, so we have cut the dosage and are retesting in 6 weeks. These kiddos are really delicate, we had no idea the dose was too high. Best advice, lesson learned here..ask around 50mcg is too high for a baby..when the PA took the history at the endo's office she was taken back by high the dose was. She assumed we were on 37.5mcg or 25mcg, said 50 seemed very high, didn't want to throw him into hyperthyroid..gee, she was right. Praise God we had that appointment, we shudder to think how long we would have gone if we didn't have that appt. At least we had only had too much meds for 8 weeks.
He is dx as FTT (failure to thrive), but the Dr. said he really looks great. Not emaciated and his skin "ripples" so the lack of weight gain in 6 months while annoying didn't concern the endo too much. He has grown in height and head circumference, so that was good. He's fallen to the 5-6% though on the growth curve and has fallen off in weight totally. So, what does this mean? Well, we had a bone scan done to determine his bone age too. His is 12m (and he's 20m) so it is an indicator of growth hormone deficiency. We did the IGF1 test as well and he's very low normal. We will give this another 5 months to follow growth and then go back. From there we may do the 4 hour growth test which is very difficult on the little ones. Ultimately we aren't worried about how tall he will be, but we do worry about internal organ growth and function if he is deficient.
Cardiologist visit - 6months post surgery - fantastic report! Repair is perfect, no leakage to speak of and we get a reprieve until next FEBRUARY!!! Can we get a HOORAY!! One less Dr. visit is always a bonus. She really was amazed at how well he was doing, wanted to know what we were doing differently. I told her she was just saying that and she said, "no, you don't see what I see." Reminds me how blessed we truly are with Parker!
Still working on walking, no more big steps, but we've been in a stroller at WDW so I'm going to say that was a bit of a hindrance for practice!
New words: eat, open, even a "hi grandpa" Parker is now saying MOOO for the cow, quack quack for the duck and will sing "row row" when we sing row row the boat.
All for now, homework to catch up on since we had snow day Friday and time to prepare for Mallory's big birthday tomorrow (she's 9)! We celebrated at WDW, we had cupcakes and singing at every meal, LOL
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.Jeremiah 29:11 Our unexpected journey with Down syndrome, babies with heart conditions, T21, and AVSD.
Lara, 40 year old wife to Michael (married 17 years, best years of my life)! Mom to 4 wonderful kids! Taylor, 11, Mallory, 8, Madeline, 6, and Parker born 5/23/09. We found out after delivery Parker has Down syndrome and a complete AVSD. He was scheduled to have open heart surgery at 4-6months, but God intervened! His surgery was postponed until July 2010 and God healed his VSD hole in the process. So, on July 20, 2010, Parker had open heart surgery to repair his transitional AV canal defect. He was in ICU for less than 24hours and home in 72 hours. We never looked back! I own an Executive Search Firm focused on Accounting/Financial placement (used to work in Big 4). Actively involved in my kids activites and school; all are competitive swimmers and son Taylor plays tournament baseball. Girls do tumbling as well. Avid runner and boot camp fanatic. Used to be a competitive figure skater growing up. LOVE to shop, ebay/etsy crazed, addicted to Starbucks non-fat lattes, a child of the KING, thankful that we are saved by faith and grace!