Monthly Update… a month late…
It’s been too long since updates again so here I go. Sabrina is walking all over the place. Nothing is safe anymore. We have her new hearing aids and have not had a problem with them since they arrived and yesterday she got new ear molds. As you can guess a growing child will outgrow ear molds on a regular basis. They have been lasting a few months and then new ones need to be made. Once they start getting too small we have a product called oto-firm that keeps them from feeding back till the new molds are made. The oto-firm is a cream that fills the gap between mold and ear.
We have reached one of our least favorite times of babies lives. She has started hollering when she wants something. The problem is, no one knows what she wants. At this point in communications learning, her brother would at least grunt and point. She just hollers till you get it right. While we are way in communication skills we are making progress. Shes not doing too badly for someone who has only been hearing for a few months now.
We are over 16 months out from her birth, about 14 months out of the hospital and we have no complications from the CDH. Near as we can tell, other than the external scars, her insides are working exactly as they are suppose to work. We have some issues we are still working with physical and occupational therapy plus the weekly time with the teacher from CID but these are all peripheralissues. These are issues from being in the NICU, issues from the surgery (large incision through a large section of chest muscle) and her hearing is a side effect of the machines and drugs that saved her life though we do not know specifically which machines or drugs may have done it. But for us, no other CDH issues have appeared. We go in to see the geneticist at the Children’s Hospital at the end of March to make sure there are no other hidden issues. Till then everything is peaceful (except for the hollering) and normal (for us).
Next weekend CID is having a parents seminar day. A few morning sessions and then an afternoon session/panel with past students/graduates from the school. Should be interesting. We have been a bit short on guidance and what to expect in the future. Hopefully this will provide some insight.
Doug is still four. He runs, he yells, he crashes, bangs, throws, rips, shreds, hides, tunnels, all in the living room… did I mention he yells. We have been back to the doctor for his breathing/coughing/sleeping and we are hopeful that what he has is not asthma. The doctor thinks it might be just a seasonal infection. We will keep going with the inhaler and see what happens once spring/summer set in.
Other than that, my websites have been migrated again. I started off running my own web server out of the basement… it was a bad idea. It was fun, but far too much work. Then I moved to a small hosting company run by a guy who really knew what he was doing. Then someone offered him a pile of cash and bought him out. That someone isn’t as impressive. So I have moved to a mainstream large hosting company. The link seems a tiny bit slower but it should not been noticeableunless you are running tests like I was to compare the two. So now I am with hostgator.com. Sabrina’s pictures are back up and I hope to add some new pictures this weekend. I have upgraded Doug’s site from my HTML to a gallery program. I am going to add more pictures of him and I have set up a section to upload some of the pictures he has taken with his Fisher-Price digital camera as well. Things look good with the new site so far, hopefully it stays that way.
grandma N said,
February 20th, 2009 at 1:06 pm
I am glad to read your posting. Sabrina is going to be a pistol, I think. She has so much energy, and is so cheerful that I can hardly believe how sick that little chick was when she was born. If Douglas can keep ahead of her—that may be the question.
We miss all of you when we are home and you are in St. L., but that makes us appreciate each other when we see you.
BTW–were the cookies good that were in the freezer? And, I am bringing down a meal of “pecan crusted salmon with honey mustard glaze” when we come down next time. (Maybe if we keep bribing you with food, we can visit)
Love to all.
Mom N.
Jenn M said,
February 22nd, 2009 at 1:54 am
Glad to hear all is well! Sabrina sounds like a little sprite! Can’t wait to see pictures!
Elizabeth said,
February 22nd, 2009 at 10:00 pm
Great blog! I hope you’ll consider adding it to the aggregator at Deaf Village (www.deafvillage.com) — we’d love to have you as part of our community!
Amy said,
March 3rd, 2009 at 11:47 am
So glad to read the update. Sabrina was one of the first CDH babies I followed obsessively. I learned so much from her and from what you shared with all of us. I’m glad she is doing so well! They truly are amazing.