So, I have lots to say, but not enough time to say it all..an update is needed though, it has been too long...I had a tough week last week, a number of things were setting me off and my kids started school so adjusting to that routine is big enough! I had some moments where friends said things to me that caught me off guard about Parker and Satan got the best of me. These friends didn't mean to hurt my feelings, so please if you are reading this don't apologize! Just hit me that some people now view us as "that family" with the "special needs" child. One of my new friends so lovingly and wisely pulled my head up and said, "Lara, stop living for yourself and measuring your self by the worlds standards, remember we are here to live for Christ." She was so right...the plans I have for myself, my kids are just that..MY plans. I am guilty of forgetting that I am to be a "stranger here on earth" and my journey is to find what plans Christ has for me. OUCH, hate that lesson. I am the first to admit I am selfish, my family knows it and so does my husband. He loves me despite all my shortcomings and for that I am SO grateful!!! Finally my precious Children's Minister posted this verse. "Cease striving and know that I am God." Psalm 46:10. This week has been MUCH better!
Busy week! 5 weeks post surgery! Yesterday we had an ENT appointment, all good news again! Parker has amazing ears, praise God! I talked to the audiologist and decided to decrease the frequency of his visits since we have had all great results (he has been going monthly)..we will follow up in December with the Dr as well as the audiologist. If there are issues we will call and go in immediately. One less Dr visit means a LOT around here!
Monday we went back to PT, the gym is empty at that time and while he wasn't technically "fully" released we needed an "outing." I realize how pathetic that sounds, therapy an outing? Yikes! She was amazed at how he'd changed in 4 weeks. We are working mostly on climbing up stairs and turning around to slide down backwards into the ball pit. We start back OT next week. I'm excited to see her again, Parker is doing great with his self-feeding. Check out our video! Pictures are of his latest, pulling up to stand on everything, but he loves the shower door the most! He is trying to climb the stairs at home, so needless to say he requires constant "eyes" all the time these days.
Today we had our follow up with the cardiologist. Another fantastic report! He is 20 lbs, vitals, pulse ox, xrays all excellent. He is off Lasix now and in one more week we will have all restrictions removed. We will be able to lift him under arms again (YEAH) and she even said "go live your life." So, while we will be tempted to venture out we will probably sit tight for a few more weeks. He has no leakage in the valve and the heart is a normal size. No swelling, no fluid. We talked more about the "bump" and I feel more at peace with it. Still isn't my favorite thing to touch or feel thru shirt, but she assumed me it is a cosmetic issue. Can't do any harm to it. Parker was his usually charming self, everyone is always taken with him and he knows it. He "works it" and flirts with the ladies. Quite the ladies man! We will see her again in 6 months and from there annually! She asked if I ever believed we'd be here a year ago and how did I feel? Thankful, joyful, relieved, in disbelief? Hard question to answer!!!
On another note, I will get on my soapbox about putting sunscreen on your kids. Taylor had a mole removed last Friday and while it was non-cancerous, it did have abnormal cells. So, he will have surgery (in office, lidocain, so he won't be put under) to remove all borders and be sure it is completely "clean." It was on his neck which is not my favorite place for a scar, but we are getting pretty good at scar management in this house!! Add an annual visit to our list of things to do for him to be "sunsafe."
Lots more to say, but not enough time. Praising God for his goodness!
"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!