Tears but no blood

I should have done a little reading on what patch testing is before today's appointment as then I wouldn't have been worried that Ian's back might get bloody again this morning. There aren't any needles involved in patch testing. Ian's back somewhat looks like the pictures this woman posted of her son only they used a LOT more tape on Ian. Even though it wasn't painful today, he still screamed the whole time. First of all, I had to lift up his shirt. This alone is pure torture according to Ian. Trust me. I go through this a few times a day. He absolutely HATES to have his clothing taken off. It sounds like it's the end of the world by how he screams when I undress him. Karen suggested a few weeks ago that I take off Ian's pjs while he's still in the crib, and that has helped with the first diaper change. He clutches his pjs and screams as he doesn't want them to come off. Anyhow having his back exposed was hard enough for him, and then they were attaching things to him, writing on his back with a pen, etc. He screamed and writhed as if he was in sheer pain the whole time. I am to remove the patches and tape around noon on Sunday. I'll do it after we get home from church. I am to darken any of the pen markings that have faded, circle any red spots, and take a photo of his back. The allergist will examine his back on Monday. The results of patch testing are to be read at 48 and 72 hours. Some clinics have you come to the doctor's office for both readings. This clinic has you take a picture at 48 hours and come in at 72 hours.

Considering the process took less than 10 minutes, I have no idea why they only do it once a month, especially as in October they were already scheduling 2 months in advance due to being booked up. I don't get it. Sometimes I think doctor's offices get into a mentality of "this is how we do things" instead of stopping and thinking what is best for the patients and being more flexible. This is not the only instance something has happened that has led me to that conclusion. Well it will be interesting to see how many red spots he has on Sunday. As I don't have the "key," I won't have any idea which foods he's showing a reaction to. It's all so confusing as the first GI did want the patch testing done, but the first allergist didn't believe it to be accurate. This second allergist does believe it's useful for treating EE. I have no idea who is right. I just hope we accurately diagnose what he is and is not allergic to.

There were also a LOT of tears this evening. I had seen an advertisement for a live nativity drive-thru at a church about 6 miles from our house. I thought the kids would enjoy that. Was I ever wrong! Well I think they would have enjoyed it if we didn't have to wait for 50 minutes in line in the church's driveway before going through the 10 minute drive-thru. Ian screamed through the entire drive-thru as well as our drive home. Nadia was also crying at the end of our trip home. I didn't have ANY notion it would take so long. I was thinking we'd be home by 7:45, which is when we start putting the kids to bed, but we didn't actually get home until 8:25. I have no desire to do another drive-thru any time soon!

The happiest moment of the day was at the mall this afternoon. I wanted to use two JCP coupons (I paid $7.59 which represented a savings of $34.41) while getting Paul's car's oil changed and tires rotated at Sears. Nadia and I enjoyed a treat at DQ while Ian "rode" some rides (no money involved). Between Sears, DQ, and JCP, I spent less than $16 at the mall today thanks to using lots of coupons. Not bad, eh? The highlight of our trip was how many people enjoyed hearing Ian sing "Frosty the Snowman" at the top of his little lungs. People were actually seeking him out in Hallmark. People said they could hear a young child singing and asked me if it was my son. Yep! Some shoppers were encouraging others to come our way and "hear the little boy singing Frosty." He actually had a crowd around him at one point. What a cutie. Nadia loves to sing, but I think Ian has more musical talent than Nadia, at this point in time anyhow.

Moments like that are especially endearing to me because sometimes I get comments regarding him which hurt really badly. On our way home from the hospital this morning, I stopped at a Weis to buy rice drink, as the store I go to in our town doesn't carry it. Ian was driving one of those little cars that are attached to some shopping carts and an older woman said to me "what a mean face - your boy is really mad." He actually was totally content. He wasn't mad at all. I have to tell you I literally felt physical pain over that comment, because it brought back so many flashbacks of when my brother used to get those comments All The Time. My heart used to hurt so badly for my brother when he was little. I remember him hiding his face in my skirt so people wouldn't stare and make comments. If a person has a definite disability (such as Down Syndrome or something like that), then generally at least adults don't say anything. It's so hard in situations like this when people who "know better" don't realize they're hurting your feelings because they honestly just think the person is mad and don't realize that's just how they look. That's what used to frustrate me with my brother. I'd think, well of course children are just going to blurt stuff out, but you expect adults to be more polite. I have a feeling my emotional response to these comments directed toward Ian are much stronger than they would have been if I hadn't gone through what I did with my brother when he was little (I'm almost 12 years older than my brother). This happens very rarely with Ian, thankfully. We endured these comments far more frequently with my brother. The adage from Bambi seems to apply here as well, "If you can't say something nice, don't say anything at all."

I asked Karen (OT) yesterday what I could do differently with Ian so that we could make progress. I told her that the only improvements I could think of over the past 6 months were #1 that he rarely bats the spoon with his hand (I used to have to hold his face and hands and now I only hold his head) and #2 now he's up to 30 bites a meal (was at 18 bites a meal 6 months ago). How much he fusses or screams at a meal varies from day to day. His tolerance of texture has regressed lately. Her response was that she didn't have any advice for me other than that she thinks Ian needs the intensive feeding program at Hershey. This involves being in a hospital ALL day five days a week for 3-6 weeks. They do 5-10 feeding sessions a day. They will also do toilet training if requested. Hershey is almost 2 hours away from our home so we couldn't make that 4 hour commute every day for that many weeks. She said we could stay at the Ronald McDonald House, but if we really went that route we'd stay with Paul's parents (who live 45 minutes from Hershey) or one of my friend's houses or something like that. I left a message with the psychologist, who is the head of the feeding team, to get his input, but he didn't call me back. I'm going to email him. It would be a big imposition for myself, Nadia, and Ian, especially if we are also undergoing IVF at the same time. In the long run it might be totally worth it. The last time Karen voiced this opinion, Keith (psychologist) disagreed. We shall see what he says this time around.

Speaking of ivf, I tried to pick up my meds today. The nurse I spoke with two weeks ago said she'd call them in so I could pick them up on Dec 9th. They didn't do that, and the ivf nurse wasn't in today. I'll be calling her first thing on Monday morning in the hopes they'll be ready for me to pick up after Ian's appointments. Nadia stayed home with Paul today since Paul was able to work from home this week. On Monday he'll be at PSU so I made arrangements for her to stay at someone else's house (a woman from Bible study who also has a 1 year old and 3 year old) during Ian's appointments. I've learned the hard way that it's not ideal to have two little ones in a doctor's exam room for an extended period of time.