Hey there! I haven't been writing much lately. I had started using Blogging as a therapy of sorts and think I just got through a really tough patch and then didn't need to write as much. So, now I need to get back to my original purpose of the blog and just keep all of our friends and family up to date!
First of all, we are doing well. We have really turned a corner as a family. We now see that Nate is just another part of our family and we are cherishing him. He has mastered the art of melting our hearts with that full face smile of his and we love it! I can honestly say I don't have sadness over him anymore. Yes, I have times of frustration or just feeling overwhelmed with all that needs to be done for him, but sadness is not part of that. I see that we have a very unique opportunity to see life through a very different perspective than most. I see that our child's special need is not nearly as challenging as so many others out there. Okay, if I'm really honest, I do have moments when I look at other families and wish for a second that I could have the typical life....but, does typical mean great? Has having Nate made us stop and evaluate what life is really all about? Yes, I think it has. And I think, from what I hear, that we will continue to slow down and appreciate the little things in life.
So, on to the update about Nate:
We have been using a hearing aid with Nate for a couple of months now. At first, it seemed very cumbersome, with it giving feedback every time he turned his head or rolled. But, with the help of the Hannah Anderson "Pilot" hat, we have worked our way up to 6+ hours each day. They seem to help, but we still know it could be better. These hearing aids are set at very conservative levels since we still don't know his exact hearing loss.
We went to the ENT Doctor last week and she was able to finally see in Nate's left ear canal. She got quite a bit of wax out and then could see to the drum. She does not think Nate has any fluid in his ears, so we will not be getting tubes at this point. Now that we know he doesn't need tubes, we are cleared to go in for another sedated hearing test. This is scheduled for 1pm on Nov 20th. After that, we should know his true hearing levels and be able to get the aids adjusted accordingly.
We went in last week for Nate's 2nd echocardiogram. There is a valve in the heart that is open in utero and is supposed to close at birth. When we went in at 6 weeks, it hadn't closed, so they asked us to come back. It still hasn't closed, but it does not appear to be affecting the heart. Our cardiologist does not feel it is necessary to perform the procedure to close the valve at this time. We will go back when Nate is 3 and see how it looks then.
We're working on this. We FINALLY had a county speech and feeding therapist come out to the house (after a 2 month wait!) last week. I just felt at such a loss on how to feed Nate since his tongue just pushes everything out. She gave me some great exercises and tips, so I feel much more empowered now.
Nate continues on his slow, steady path. He is rolling all around, transferring his weight while on his tummy, reaching for toys, holding his bottle (at times), pivoting on his tummy, doing a little bit of prop sitting and holding his head up very well. Nate has an opposite challenge than most babies with Down syndrome. Most have very week muscles on their front side (flexors) and stronger on the back (extensors). So, this means Nate loves to lie on his back and stick his feet in his mouth and roll around. But, it means it's very challenging for him to sit up straight. We have started using kinesiology tape, which we tape in a certain position on his back so that if he slouches it gives him a reminder to lengthen his spine and sit up. This seems to be helping, but I'm imagining we have a few more months before he will be able to sit up on his own. In the meantime, I'm just enjoying this elongated "baby" time - don't we all always say the baby phase goes too fast with our typical children? This is my chance to truly appreciate it!
This is the one area Nate is not lacking! Nate is extremely social. He has excellent eye contact and always wants to be around others. He is magnetic!
Okay, I think that sums it up for now!
Thanks for reading!