We started with an ultra sound. Why? Because it is one of the tests that Dr. Li would like before seeing us. All of these tests are simply checking to make sure that her vomiting, nausea and stomach pain during her episodes is not due to something besides Cyclic Vomiting Syndrome. So, for example, during the ultra sound they measured her kidneys, took pictures of her spleen and bladder etc. I thought (when will I learn??) that this would be a very easy test for Ellie. Naively, I also thought it would last about 15 minutes. It was not and it did not. For whatever reason Ellie was not a fan of this test. She had to fast the night before and was probably hungry, tired, and her silly mom told her it would only last 15 minutes when really they took pictures for well over an hour. Oops. Also the first technician who brought us back did some "practice swipes" for a while before the actual technician came in and she was pushing too hard and my inner mommy bear almost came out to roar. |
| What would our life be like without the ipad? |
Then the next day was Ellie's sleep study. This was Ellie's 3rd sleep study. She had one when she was 2-years-old. That is how we found out she had sleep apnea. Before her surgery, which was just after her 2nd birthday, she had never slept for longer than 4 hours, she didn't have more than 10 words that she sometimes used (had never said "mama") and host of smaller issues. She had surgery to remove her tonsils and adenoids. After her surgery B and I were so blown away with the difference that we thought all was well. I'll never forget the nurse on the phone telling me that after her surgery she should not be waking up *at all* at night and if she was still waking then they would like her to come in for another sleep study. I turned it down. I didn't want to put her through any more. Oops.
About a year ago after seeing an allergist, a child psychologist who specializes in sleep and an ENT (because very rarely your adenoids can grow back), our regular pediatrician sent us to get another sleep study done. That test showed too much limb movement for a child of her age and (I just learned this recently when the wizard of sleep reviewed this particular study) on a scale of 1-10, Ellie's apnea was about 1.5. In that scale the interpreter of the sleep test will write that she has no apnea because that is such a tiny amount relatively speaking. But, the wizard of sleep says that's not good enough for a 6-year-old. A child should have zero, not 1.5. Even a bit of apnea in a child is a hint at why there is poor sleep. Anyway, the wizard of sleep wanted her to have another sleep study for various reasons.
Here are pics from sleep study number 3. None of it hurts, but it is very uncomfortable as you might imagine. There are a bundle of wires on your head, chest, legs and stomach, a tube in your nose, etc. Then you are supposed to sleep. Right.
Unfortunately, Ellie was a tiny bit congested on the day of her sleep study. I called the nurse and they said to come in anyway. But by the time she woke up the morning after the sleep study it was clear she had a nasty cold. We are really hoping that didn't mess up the test too much.
Cute side story: We were woken up in the hospital at 5:30am after falling asleep late. Ellie usually wakes at 7 and she had a cold. BUT, she was begging to go to school that day because "Q" and "U" were getting married. In case you didn't know, Q and U are often found together in words like QUACK and QUIET. The kindergarten was having a wedding with a reception and everyone was supposed to come to school in formal attire. So cute! Ellie did not want to miss it. So I let her go to school (after going home to scrub the stuff off her head). Here she is on the ride to school. Colin said, "Mommy, Ellie is crashed out."
The red t-shirts were for the "sufferers" and the rest of us wore blue. Some of the families and friends put team names on the back of their shirts. One team was "The Puking Pickles." My Dad and I had fun trying to think of our team name for next year. Who wants in?!?
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| Squinting E and her new CVS buddy. |
Thank goodness, Ellie made a friend! We were so excited. At first I thought she was much younger than Ellie but in fact she is just small and Ellie is just tall. She and Ellie had a blast and they are both kindergarteners. Her family lives in Wisconsin but we might try for a day trip sometime later in the year. Next year we will be inviting as many people as we can, but this year I wanted to just experience it and try to meet as many other parents and kids as we could. My parents came down for the walk which was amazing and wonderful. They helped with the kids so we were more able to meet and really talk to other parents. Their generosity and willingness to do just about anything for their kids and grandkids is remarkable, beautiful, amazing...
By Sunday our little family was EXHAUSTED. What a week!
Because I am already so long-winded, I did not include the part of last week that included some major health issues with Bella the Beagle...EXHAUSTED. So, when I got a phone message on Monday saying that Ellie's ultra sound results were in and they wanted to talk with me at "my earliest convenience" I almost lost my mind. I had just told myself (and all of facebook) that it was going to be a better week, a calmer week, a more productive week...a glass half full sort of a week. Ugh! When I finally got a hold of the nurse she said that the images of the bladder suggested there could be an infection or something of that sort. Something looked off. So, I scooped up Ellie from school (as well as the girls I babysit for and of course Colin was along for the ride) and we all went off to the doctor's office so Ellie could pee in a cup.
**Trying hard to maintain my goal of--glass half full--**
The urine results were normal and they sent all of those results up to Dr. Li's office.
Monday night Ellie had a hellish sleep. I don't know what was up with her but neither she or I slept much that night. EXHAUSTED. Then on Tuesday I picked up Ellie early from school and we all trekked into the city to see Dr. B, the sweet and sunshiny sleep dentist, to pick-up Ellie's retainers. Again, because I am either stupid or eternally hopeful, I thought this would be an easy-ish appointment. Ellie was excited to have retainers, I didn't think it would take long at all, etc, etc. Wrong, wrong, wrong. Ellie was scared and it sort of hurt to get them put in and adjusted and all of that. EXHAUSTED.
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| E realizing this might not be so great after all. |
Ellie has had a rough few days since then. She is getting used to the feel of the retainers which we are not supposed to take out at all. We can take them out once a day to clean them, that's it. As it turns out, this is not going to work for her. She is the pickiest, slowest eater I have ever known...and that is without retainers. Trying to eat with retainers has caused some serious stress for both she and I this week, so when she eats at home she will pop them out and set them on the table until she is done. I feel like we are totally breaking the rules, but I can only handle so much at one time. Ellie's weight continues to drop. She still isn't pooping with any sort of regularity (hasn't pooped for four days now) and so not eating just isn't a possibility right now. She also has a really hard time talking with them in, but that has improved quickly. Lotta drool!
This is the longest "update" yet. As usual it feels great to get it all out there--thanks for "listening" and loving us while we keep on keeping on!
GLASS HALF FULL--- Through all of the craziness of the last two weeks, Ellie hasn't had one episode. Now that is a full glass!
