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!