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Monday, March 31, 2014

From Poop To Cameras...

Sometimes this life of ours just makes me laugh. And want to punch myself in the face out of frustration. How can nothing go smoothly? How can nothing be easy?

Here's an example. A couple weeks ago, I was getting ready to take Ella in for her overnight sleep study. I was packing our bag, getting her ready, all the while staying calm and not letting my nerves show so that Ella would see it was nothing to worry about and Ben would see it would be ok that I was gone for the night. At one point he said he didn't want me to go because what if something happened to me overnight or I died? I laughed and said "Ben! I will be at the hospital!! I'll be safer than any of you!!" That made him smile.

So I'm getting ready. Things are crazy. The kids are crazy and there's just chaos everywhere. Then I let the dog in from being outside and see that he has poop stuck in his long hair. Poop everywhere. Some still in his tushy, and most just all over his fur everywhere. 

Seriously? Right now, you need to pull this, Ollie?

So I held Ollie butt-first in the sink while Alex worked to free the dog from his poop explosion. We were basicly successful. But I was all wet and poopy, so in the little time we had left at home, I had to add a shower and change of clothes to my To Do List. Thanks Ollie. Really needed that.

Last week Ella had an eye exam as part of her preparation for entering Kindergarten in the Fall. The doctor dilated her eyes and we putzed around for a very long time in the waiting room. When the doctor looked into Ella's eyes, she sat there looking for a really long time. I started to worry. 

The doctor said that the nerves in Ella's eyes are asymmetrical and some are thicker than others. She asked about our family's eye history. She asked about glaucoma. I started to worry more. Something in the back of my memory jingled, and I told the doctor I've heard her say this before, but I can't remember which kid it was that she said it about. She said she'd look at the boys' charts and see if any of them have this problem too.

The doctor called me later and told me none of the boys have the same issue that Ella does. While we were on the phone, I said I think I remember her saying this about Ella's eyes a couple years ago. She said she hadn't had Ella's full chart at the exam, so she looked at it. Sure enough, it was Ella who had this same issue two years ago at her last eye exam. The doctor said this made her feel better, but that Ella should still come back in two years for another exam. We may need to take baseline measurements, she said. 

I asked my normal Mommy Triage Question: What should I watch for that would indicate there is some kind of problem with Ella's eyes? The doctor disappointed me by saying there is nothing I will notice that would tell me there is a problem. I hate that. I hate heart and eye and brain problems because I can't see the changes with my eyes and I don't know when something is wrong. I can't control it and I don't like it. 

The doctor also said Ella's eye issues could be from her prematurity. All three boys escaped any long-term effects on their eyes from being born so early. I guess we had to have one that would have eye issues.

So now there's that to add to my Kid Bible of symptoms, diagnoses, exam results, etc. Plus the fact that we found out after Ella's sleep study that she's allergic to latex. 

At what point does a Mama's brain become just plain overcrowded and refuse to remember any more information about her kids?

Ben has an old camera that my dad picked up at a garage sale for me a couple years ago. Ben loves this camera. He takes it outside all the time and takes pictures of nature. Birds. Fences. Whatever. He wanted to bring the camera, in its big bulky case, with us to Florida on our Spring Break trip last week. For weeks before the trip he talked about it. For weeks I strongly discouraged it. The day of the trip, he dug in his heels and said he MUST TAKE THE CAMERA. So we talked about how he would be responsible for it the entire trip. No one else was going to carry it in airports. No one else was going to do anything with it. It would be Ben's responsibility, and Ben's alone. He agreed to all my terms. So into the luggage pile the camera went.

He didn't use it once on our trip. 

But he did responsibly cart it through airports and into taxis and out of taxis and on elevators, without complaining. So all went well. 

Until the plane ride home. 

I don't know who put that stupid camera in the overhead bin, but one of us did. And then one of us forgot to get it back out at the end of the flight. I didn't realize it was missing until we had all our luggage from baggage claim, and I felt something was missing. I realized with total DREAD that it was Ben's camera that was missing. This kind of thing can completely obliterate any sense of normal functioning Ben might be feeling. He can melt down in the blink of an eye if there is something like this to spark his devastation. 

I told Ben we had forgotten his camera. Long story short, the camera was located on the plane, brought to Lost and Found, Grandpa drove back to the airport the next day to get it, and brought it to Ben the day after that. Problem solved. But Ben was still completely devastated. The camera wasn't in his possession NOW. It was out of sight, which means the problem was not solved. It didn't matter that Ben would have his camera back in two days, thanks to Grandpa and a flight attendant. So boy oh boy did we have a tough ride home from the airport after that. 

Sometimes Mommy just can't fix things. Sometimes Life trumps Mommy. I hate that. 

There are so many times when I just have to laugh about this crazy life. It's definitely interesting, and makes for a good story. Someday. A long time after the wave of rages and disappointments and stress has receded. 

Sleep Study

Ella recently had a sleep study. It was our first experience with a sleep study, despite the fact that all our kids have sleep problems. I think I should have gotten the boys sleep studies, but at the time we didn't look at that as an option. The medication they take allows them to all get a restful night's sleep, so we felt the problem was, at least temporarily, solved. 

I finally convinced the pediatrician that there is something wrong with the way Ella sleeps, or doesn't sleep. Something abnormal and weird. She has pretty crazy twitches while she sleeps. She can't get to sleep. She can't stay asleep. Sometimes she is up at 3 am-- for the DAY! It's not that she's trying to be pesky. She tries so hard to fall back to sleep but she just can't sometimes. She's chronically fatigued. She is frequently irritable and tearful and clingy and anxious- things that weren't part of her personality before. Her sensory issues are magnified and troublesome to her. We need some help. Everything I've tried isn't working.

There have been amazing things we've tried along the way. Ella hasn't slept well for several years, so we've tried a LOT of things. Our OT has given us such incredible things to try. We've done energy work with Ella. I've tried using essential oils. She still gets brushed, which helps her overall mood a lot. We do baths in Himalayan pink bath salts, which are supposed to help clear negative energy. We do tapping, or EFT. Of course we have a bedtime routine. And we've used a weighted blanket. We've tried so many things. Nothing helps.

I'm always honest with my kids about doctor's appointments. They know that if they ask if something will hurt, I will tell them the truth. Sometimes I want to just lie and say "Nope! Nothing will hurt!" as I'm trying to wrangle eight little arms into coats and herd eight little legs out the door and four little butts into carseats. I know if I lie things would go smoother, at least until we get to the doctor's office. I know if I lie, I won't have to stuff a hysterical child, or four, into the car and make them promise they will not unbuckle themselves while en route to the dreaded appointment. But I made myself and my kids a promise- that I will be honest with them about appointments and pain. They all have so many appointments of so many kinds, I feel like it's only fair to them to give them honesty so they know what will happen at any given appointment.

So Ella asked if anything would hurt at this sleep study appointment. I looked her in the eyes, and I told her nothing will hurt. They will stick silly wires all over you, and then the two of us get to have a Girl's Sleepover at a special hotel room. It'll be weird, but nothing will hurt. 

Even though Ella is young, she knows I tell her the truth. So she believed me. As the technicians were putting sticky stuff and wires all over little Ella, I could see the struggle in her eyes. She was scared, but she believed me that nothing would hurt her. She didn't cry even once! I was so amazed and proud of her.

Sticking all those wires to her was quite an ordeal, and by the time they were done it was almost 10pm. Ella was tired. She laid down and the techs talked to us from behind their magic wall. We had a tech who was training and her supervisor. The tech who was training told Ella she was going to give her some directions to follow. The tech said "Look to the left without moving your head." Uh, she's four. Maybe some 4-year-olds could easily do what the tech said, but at 10 pm when you're freaked out and tired, and the stranger behind the wall is talking really fast and you're in a weird hotel room, that's too much to process. So I translated for Ella. "Don't move your head, and move just your eyeballs to look at the door" I said. The training tech said she had never had a patient this young, and that was a little bit obvious. The crazy thing was she never got the hang of talking to a little one. I think that tech needs a little more training. 

After the techs left us alone, we read a couple books and Ella fell asleep in no time. She did everything normally, which I was glad of. She jerked her limbs. She twitched like crazy. She woke up during the night. She fell back to sleep.

At 5am, the training tech came in and said loudly "Good morning! Can I turn on this light?" And she flipped the switch to turn on the fluorescent overhead lights. I covered Ella's eyes so she wouldn't be blinded. The supervisor came in and exclaimed "What are you doing? Are you trying to kill them??" He flipped off the horrible lights and turned on a lamp. Sheesh. A little more training is definitely needed. They took all the wires off Ella and we were on our way. We stopped for a donut on the way home. We deserved it. Ella was tired but I was EXHAUSTED. I didn't sleep much, worrying about Ella all night.

The day after the sleep study, Ella's skin started erupting. Everywhere she had had a wire stuck to her with adhesive, she broke out in an angry, ferocious red rash. All over her sweet little face. Her chin, neck, back, behind her ears. It was horrible. I tried all my Mommy Tricks to make her feel better but nothing worked. After a couple days of that misery, I took her to the pediatrician who said she has contact dermatitis. I said yeah, I know. I Googled it. We got stronger meds. I called the sleep clinic to see if they have latex in their adhesives, to find out whether Ella is allergic to that. Sure enough, there is latex in the adhesives. Ella is allergic to the adhesive on bandaids, but I hadn't even thought she would be allergic to all adhesives. I felt so badly for her. I'll have to remember this so it doesn't happen again. One kid with a latex allergy- check. One more thing for Mama to remember.

We met with the doctor last week to get the results of the study. The doctor said Ella had a good sleep study, and that her sleep is normal. What?!? I was so shocked, I didn't even argue with her. How can it possibly be normal? So our next step is to meet with the pediatric behavioral sleep doctor to figure out what else we can do to help Ella sleep. I know some of her problems at night have to do with her separation anxiety, but really, all that twitching cannot be normal. 

The adventure continues...