Tubes, ABR, STARband and Interesting Issues

She will still stick her tongue out if you ask enough times!
Sleeping in her STARband. She took yesterday off due to her tubes being placed in her ears. The schedule today is to wear it 2 hours and then off 1 hour and not wear it at bedtime to sleep.

Yesterday went well, except for having to be up by 4:00 am! We arrived at the hospital at 5:57 am and were immediately called back to what would be Alayna's prep/recovery room. The nurses took her stats and went over the surgical consent while the anesthesiologist discussed his plan. They took her at 7:20 am and she was back with us by 9:00 am. The tubes only took about 10 minutes to place. The ABR hearing test took the most time. Unfortunately, it was inconclusive (again!) because she had a lot of fluid that had to be drained from her left ear. We will have it repeated again in 3 weeks on January 30th. The ENT put "T" tubes in her ears. It isn't the standard straight tube. It actually looks like a T and is supposed to help them stay in longer. She has small ear canals, but not the smallest that he has ever seen. I had to ask! The great thing is that if she does get an ear infection we will notice by seeing drainage from her ear and it can be treated by a high concentrated ear drop and not an oral antibiotic. She won't have the pain and pressure that go along with it either.

I keep watching her response to noise and sound now that she has the tubes in place. I may be dreaming, but it seems like she hears better. I obviously don't know this for sure, but her musical VTech toys are sure catching her interest more. We'll just have to see!

Today begins the process of wearing the STARband helmet. We took yesterday off because of the procedure. By Tuesday, she will be hearing it 23 hours of the day, only taking it off for an hour for bath time. We will need to watch her head at that time and check for any red spots where the helmet may be rubbing too much. This is going to be a challenge with all of her hair. If the spot doesn't fade within 45 minutes then we will need to call the doctor and have them look at her. They will make the necessary adjustments on the helmet as her head changes and molds. I imagine it is somewhat like braces on kids teeth. They constantly change and need adjustments.

I did join another Yahoo support group that deals with positional plagiocephaly. I know that I will gain lots of knowledge from these people. It has so many members. This has become quite an issue for some kids due to the "back to sleep" campaign to reduce SIDS.

My 1p36 Support Group was having some interesting conversations lately. I'd like to fill you in on a few of the issues. One was on STIM's, short for self-stimulating behaviors. Some of the kids tend to bite their fingers and hands or flap their hands for whatever reason. It has been noted that many of our 1p36 kids enjoy opening and closing doors, drawers, and books, turning lights on and off, and sometimes rocking themselves as a soothing technique. Each child is unique, but I found this interesting. I do notice that when I feed Alayna she often takes her left foot and moves it back and forth. We'll have to see if Alayna does any of these things or develops her own unique behavior. Just something to put in a file in the back of my mind!

Another topic was on tears. A parent of a 10 month old asked if any of our children produced tears. I guess I hadn't really thought about that and neither did they until the pediatrician asked them. And I can say that I've never noticed Alayna actually having a tear "falling" or "rolling" down her face. But Alayna rarely cries. When she has cried in the past her eyes may have gotten moist, but not teary. Alayna only cries if she is really hurt or something is really wrong. This seems to be a trait of our 1p36 kids. Alayna tends to whine and fuss when something isn't right, but not cry. I think many of our kids are very low key and show little to no emotion. Now some of the parents of the older kids said "Yes, they do produce tears." Maybe it is also a delayed thing. We'll just have to watch Alayna and revisit this topic again. It is really interesting to me.