Wow! I can't believe it's been nearly a month since I updated this site! I guess no news is good news, right??
Actually the past month has been relatively good. Peyton's physical and occupational therapies are progressing well. She still has a very long road ahead of her, but those of you who haven't seen her in the past several months would really see a huge difference. She still is not sitting unsupported. Her head is still not 100% stable. However, she's really improving her strength. She is tolerating being on her stomach so much more. She will raise her head while on her stomach, and stay in that position for some time now. When she's on her back, she will sometimes raise her head and lift her feet off the ground at the same time, and then roll to the side.
We have not yet seen the gastroenterologist regarding Peyton's feeding/swallowing issues, but that is scheduled for this Thursday. That said, we need to reschedule. Once again, Peyton is having a really rough time with those "chalazions" (sty-like bumps) in her eyelids. Her left eye is particularly bothered by them. I took her to her ophthalmologist last week and I don't think she was thrilled that they weren't taken care of by the other ophthalmologist when he did her eye exam under anesthetic back in October. To his defense, they were not actively flaring up at that time, and I could see where he would not have done anything. Peyton is having surgery on Friday to remove several of these bumps. This is surgery #13, general anesthetic #17.
Peyton's left hearing aid suffered an untimely demise yesterday. We'd gone to church, then out to lunch, then home again before going to have Santa pictures done at the mall. When we were getting ready to leave the house for the mall, I noticed her hearing aid wasn't in her ear. She does pull them out from time to time, so the search was on. When we failed to find it in the house, outside the house, or in the car, we got back in the car and went to the restaurant parking lot where we searched around the vicinity of where we had parked. Peyton had been in her stroller in the restaurant, and we thought it was possible she threw it overboard while in the restaurant (thought not likely) or she pulled it out or it fell out and it was in the stroller, unknown to us, at the time Ron collapsed it and threw it in the back end of the car.
We didn't see anything immediately by where we'd parked, so Ron ran in to the restaurant. He began asking the owner and they looked around our table. A lady popped up and said "Did you lose a hearing aid?" Ron excitedly said he had. She said, "I found it!" Well, thank God! He asked her where it was and she said she saw it in the parking lot and put it on the hood of our car. He asked what she meant, so she took him out to the parking lot, saw our car and said, "Oh, I guess it wasn't your car and they left." The lady left and Ron began a one-hour search of the entire parking lot and exits to the main road. The restaurant is in a large strip mall so it was not just a small single-business parking lot. Did I mention it was starting to rain?? Electronic devices don't tend to do well in water, so I was SO hopeless at this point that we'd get it back in working order.
Well, the search did eventually end with the discovery of the hearing aid. It was on the main road (which is an extremely busy 6 lane main thoroughfare. Just as you'd suspect, it apparently flew off the hood as the vehicle turned the corner. The only thing salvageable about the hearing aid is the custom-fitted ear mold that goes inside her ear. The actual hearing aid is dead. Smashed.
Bad Sarah says, what kind of idiot leaves a hearing aid on the hood of a car??? Why was the hearing aid not brought to the restaurant or the one business that was open near where we'd parked....especially if it was looking like it might rain??? How did she assume it even belonged to that car? And how did she think they'd even SEE a tiny hearing aid on the hood of their car. I don't normally check the hood of my car when I get into it, so why would this person?? Granted, what kind of idiot doesn't check the stroller for a hearing aid before collapsing it and throwing it back in the car. Of course, you don't expect that to happen, so that was an honest mistake on our part. This lady probably really meant well, but if she only knew our current stress and frustration level with our life-situation, she might have thought differently about what to do with the hearing aid.
The day was not great yesterday and the dark sky as it threatened rain was truly representative of how we feel much of the time. Although, normally it feels like we live under a black cloud - not an entire black sky!! :)
I have to say, though, as I sat in the car crying in frustration while Ron braved the weather and searched high and low til he found that hearing aid, I prayed. Now, I don't normally hear voices...but I kept hearing "Have faith. Have faith." The more frustrated I got, the louder that voice got. When I saw Ron out at the road bending over, and picking something up I was SO filled with hope. The tears stopped and I felt calm - well, relatively calm considering. I thought, could it be??? Have faith. Yes, it could! Now, it truly would have been wonderous if the hearing aid came back unscathed. The good news is that the hearing aids are insured with a one-time loss/damage replacement for minimal cost. Considering the pair cost over $3,000.00 (which thankfully was covered by my insurance 100%), I'm not going to sweat the $125 replacement cost for one hearing aid. I'm going to duct tape them to her head though. And just when I'm thinking, well, so much for "have faith" - the hearing aid is beyond repair - the ear mold was not damaged at all. It is salvageable. That alone is worth a lot to us. I'm pretty sure we can order the hearing aid, the audiologist would have to set it, and we'd pick it up. If we had to get new ear molds, that would be another visit someplace to have the impression done and then a wait til they came in which may or may not coincide with the arrival of the hearing aid. At least we've got the ear mold ready to go for when the hearing aid comes in. In the meantime, Peyton can't hear.
Through all this, I was reminded of a line in the closing song at the mass we'd just been to. I was singing along just fine, as I really liked that song. However, when it got to the verse "the blind will see, the deaf will hear", I could no longer sing as I started to cry then and there. I'm thinking to myself...when. When will she see??? When will she hear??? Well, I guess she won't be hearing out of one ear for however long it takes to get this new hearing aid. I guess it all goes back to "Have Faith!"
It's Monday. It's the start of a new week. Hopefully things will be brighter. Hey, at the end of the day yesterday, we got a great Santa picture which I had to share on this site as my welcome page picture. It's the fourth year we've had the opportunity to take kids to see Santa and it's been the same Santa every year. He is truly "Santa". He is THE best Santa I've ever seen. I said to Ron on the way there after the hearing aid incident that I just didn't know what I'd do if it wasn't the same guy! The line was short, the kids did great, and it was such a treat to see the joy the experience brought to Moira. Between Santa and the 8+ foot tall reindeer parading through the mall, she was a real joy to watch.
I'll keep you updated after Peyton's surgery. I'm sure it will go well. It's relatively minor compared to all she's been through.