Hello everyone! With the birth of Daniel and the amount of time I've spend on the phone updating people about us, I thought I'd start a blog again to try to save some time. I tried it out when Lily was born and didn't get too far, but I'm going to try again. Will try to make updates about Daniel and Lily (and Joe and I too, sometimes) on a regular basis.
What's going on recently:
- We called ECI (Early Childhood Intervention) yesterday to get started on getting therapy for Daniel. They should call us by the end of the week to schedule an intake appointment.
- I did some research about Special Needs Trusts. People have been asking me about opening savings accounts or 529 accounts for Daniel. I have been advised that this is not a good idea because any assets in Daniel's name could keep him from getting benefits from the government should he need them later in life. A way "around" this (its complicated) is the special needs trust. You can read more about it here: http://www.nsnn.com/frequently.htm . Not sure when we will start things rolling to do this, but we'll keep you informed.
- Daniel has his follow up cardiologist appointment late in the month. When he was born he had an electrocardiogram and the doctor found three small holes in his heart. Two of them are small enough the doctor was pretty certain they would close on their own. The third is borderline. It is 4mm and between the two upper chambers. I think this defect is called an ASD but I am still learning the lingo. Anyway, it is about 50/50 whether this one will close on its own. If it doesn't he can get surgery for it later in his life.
- Nursing is going ok. As of Friday Daniel was up to 8lbs2oz from a birth weight of 7lbs9oz. The pediatrician says that babies with DS do gain weight a little slower. He also had a bad cold last week and was not eating well, so he is catching up a bit. He is a very sleepy baby and honestly nursing him is pretty frustrating, but I am going to keep going as long as possible because I know it is very good for him. He has a good latch, he is just very hard to wake up. Imagine forcing someone to wake up every two hours during the day! It gets old.
- Lily is doing okay. She loves her little brother so very much, but she is also stressed. She has been having night terrors pretty much nightly. Luckily no potty regression. I'm thinking this is still pretty normal for a toddler with a new sibling.
- I have started contacting other moms of kids with DS in the community and it has been really just so nice to talk to women who have been where I am and who "get it."
Some good news:
- Daniel has been rolling over consistently tummy to back starting the day before he turned two weeks old. We have video of it! And we try to give him the opportunity to do this a few times a day. This is pretty huge for a baby with DS. We are trying to be quietly excited for him because we know it doesn't necessarily "mean anything," but we hope it is a good sign.
-Yesterday he started purposefully reaching for toys, but he hasn't been able to grasp them for more than a few seconds. He is figuring out his hands though!! Another hopefully good sign.
I think that is it for now. I will probably have another update by the end of the week.