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.
Showing posts with label holidays. Show all posts
Showing posts with label holidays. Show all posts
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
Tuesday, December 13, 2011
2-months old
Has it really been 2 months since Josiah was born??? This is an amazing journey we are on. I'm loving every minute of it.
Josiah had his first EI visit and he did very well. He is a social little boy and likes the EI worker. At this point, they simply monitor his movements, etc. He's turning his head in both directions (favoring the right, slightly). He tolerates laying on both sides. He brings his hands up to his mouth. Even on his side, he is able to bring his hands to mid-line and then to his mouth. He is alert and enjoys looking around his environment. He recognizes voices and searches for those he knows. His eyes are big and bright :) No delays evident, as of yet. The EI professional has requested a PT and RN consult. This is not due to any concerns, per se. Rather, they want to assure that a whole team is in place in the event they are needed.
I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol). Carl & I were recently introduced to a local group of parents. They have a page on FB & we recently joined. What an amazing group of people. There are approximately 130 members. They are all local and they are all raising a child with DS. They have get-togethers once per month & special annual events. We look forward to attending our first get-together & getting to know our new friends.
With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic. We'll likely schedule that for January. His first clinic appt is scheduled for June. At that time, he'll meet with their team of specialists. They will monitor him approx. every 8 months until the age of 18. What an amazing time & place we live in. I thank God everyday that Josiah has such wonderful supports. I know he will truly blossom into an incredible young man, just like his two brothers.
Josiah's older brothers are great. James just turned two & cherishes every moment he is afforded to kiss his baby brother. James will say, "Hi, baby!" We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby. James would love to fling him on the floor and play with him....hence the constant supervision :) Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went. He's doing very well in preschool & adores his baby brother(s). Jesse knows that Josiah has DS but it matters not. Josiah is his brother - nothing more, nothing less.
Oh yeah, I almost forgot to mention the best thing. Yesterday, Josiah turned 2 months old & he smiled at me. I mean a real ear-to-ear smile. My heart melted! As my friend said, "he turned 2 months old but you got the best present." She's absolutely right!
God knew what he was doing when he sent us Jesse, James, and Josiah. They are wonderful children & we couldn't ask for more. If I had to go back and do it all over again.....I wouldn't change a thing <3
Josiah had his first EI visit and he did very well. He is a social little boy and likes the EI worker. At this point, they simply monitor his movements, etc. He's turning his head in both directions (favoring the right, slightly). He tolerates laying on both sides. He brings his hands up to his mouth. Even on his side, he is able to bring his hands to mid-line and then to his mouth. He is alert and enjoys looking around his environment. He recognizes voices and searches for those he knows. His eyes are big and bright :) No delays evident, as of yet. The EI professional has requested a PT and RN consult. This is not due to any concerns, per se. Rather, they want to assure that a whole team is in place in the event they are needed.
I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol). Carl & I were recently introduced to a local group of parents. They have a page on FB & we recently joined. What an amazing group of people. There are approximately 130 members. They are all local and they are all raising a child with DS. They have get-togethers once per month & special annual events. We look forward to attending our first get-together & getting to know our new friends.
With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic. We'll likely schedule that for January. His first clinic appt is scheduled for June. At that time, he'll meet with their team of specialists. They will monitor him approx. every 8 months until the age of 18. What an amazing time & place we live in. I thank God everyday that Josiah has such wonderful supports. I know he will truly blossom into an incredible young man, just like his two brothers.
Josiah's older brothers are great. James just turned two & cherishes every moment he is afforded to kiss his baby brother. James will say, "Hi, baby!" We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby. James would love to fling him on the floor and play with him....hence the constant supervision :) Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went. He's doing very well in preschool & adores his baby brother(s). Jesse knows that Josiah has DS but it matters not. Josiah is his brother - nothing more, nothing less.
Oh yeah, I almost forgot to mention the best thing. Yesterday, Josiah turned 2 months old & he smiled at me. I mean a real ear-to-ear smile. My heart melted! As my friend said, "he turned 2 months old but you got the best present." She's absolutely right!
God knew what he was doing when he sent us Jesse, James, and Josiah. They are wonderful children & we couldn't ask for more. If I had to go back and do it all over again.....I wouldn't change a thing <3
Labels:
Children's Hospital,
down syndrome,
down syndrome clinic,
DS,
EI,
facebook,
fb,
holidays,
journey,
nurse,
physical therapy,
PT,
rn,
Trisomy 21
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