The last couple of weeks have been busy as we prepare for Christmas. We completed our shopping tonight (we think). Tomorrow is dedicated to baking desserts, then wrapping gifts. Saturday is our annual Christmas Eve celebration with family, then xmas day :) I said to Carl the other day, "Isn't there something magical about watching Christmas through the eyes of a child." He agreed.
Josiah went to the MD on Tuesday for his official 2-month check up. On our last appt (11/17), he weighed 7.10oz. Tuesday, he weighed 9.14oz. That's a 20oz weight gain in about 4 weeks. The MD actually said he was "pleased" with the weight gain (we laughed previously as he's a bit of an alarmist, at times). He's gaining sufficiently and he's primarily breastfed. That's great news.
The MD did detect a heart murmur. We're not really concerned about it. While pregnant, they discovered that Josiah had a hole in his heart (a VSD). Matter-of-fact, that was one of the first "red flags" to the DS. A few weeks later, the hole had disappeared. Just to be certain, we made an appt at the advanced fetal care center @ the Children's Hospital. They spent about 2 hours examining Josiah's heart (in-utero). They confirmed the absence of a hole. They said that a tiny pinhole could still be possible, even though they couldn't see one. The continued by saying that pinholes generally cause no problems and, more often than not, close over time. The day Josiah was born, they detected a heart murmur. However, 2 days later (upon discharge) the murmur was seemingly gone. This was the first time the murmur could be heard again, since his birth. We immediately connected with a cardiologist at Children's. Josiah has an appt in January with cardiology. We're already relieved due to the extensive examination he had while inutero. We believe it can be no more than a pinhole. It's just one more professional to be included on our growing team :)
On Wednesday, the EI PT came out to see Josiah. She's confirmed he definitely has low tone, but primarily in the neck & trunk. His arms and legs are good. So, she will see him monthly (for now). The EI worker will start seeing him weekly and, she too, will work to improve his muscle tone. PT has assured us that she can increase to weekly visits, if they become warranted. Josiah is a strong little boy....he'll get there :)
We are so blessed to have the team of professionals we have. We love each and every one of them. This is an amazing journey. Next month we'll meet the cardiologist & schedule Josiah's new baby visit at the DS clinic. In the meanwhile, xmas is in three days....a four year old, a two year old, and 10-week old Josiah - it doesn't get any better than this.
Happy Holidays to all!
Welcome. I was inspired to write this blog while pregnant with my son, Josiah. At 18 weeks gestation, Josiah was diagnosed with Down Syndrome. He had open heart surgery at 3 months and has had RSV twice. He is now 21 months old. He and his two older brothers amaze us everyday. Josiah was not a mistake, nor is he a regret. He is a miracle and the light of our lives. We share with you this beautiful life we have been blessed with.
Friday, December 23, 2011
MD visit and PT introduction
Labels:
breastfed,
cardiologist,
christmas eve,
down syndrome,
DS,
EI,
heart defect,
heart murmur,
holidays,
MD,
PT,
Trisomy 21,
VSD
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