Sleep...the Never Ending Challenge

After Maizie recovered from her pyloric stenosis surgery at the age of two months I thought everything would become "normal" for her. That she would be a healthy little baby from then on.

One of our many hints that Maizie's health was 'off' came around the age of eleven months. Maizie was unable to fall asleep. Once she finally did fall asleep her slumber never lasted more than an hour before she would be up again. Either full of energy or crying her blood curdling screams that nothing could calm. These screaming sessions lasted from fifteen minutes to a couple hours straight. It was pure torture to watch her scream and not be able to help her. Nothing we did calmed her.
Joe and I began arguing over who was getting up with Maizie in the night. We argued over who was with her more during the day to hear the ongoing screams. Schedules were made to try and share the challenge of trying to help Maizie sleep. We tried having her sleep in bed with us, we took turns sleeping on the floor beside her crib, various music was played, lighting adjusted and the list goes on. Eventually nothing was working and our arguing intensified. There was really no fair way to share her amazingly erratic sleep schedule so we made a drastic decision. A pact was made that we would both get up with Maizie. Together. Every single time.

Of course I still became upset on occasion since I was with Maizie all day. Maizie rarely napped but had long screaming bouts. Once Joe began traveling we had to alter our deal. Getting up together worked for her first four years or so. Eventually long bouts of insomnia had to be divided up. Joe took four hours and then I took four hours. When he traveled I struggled and napped a lot once he came home.

When Maizie was doing well she was a complete joy to be with. I patiently waited for these moments or sometimes string of days to happen and was determined to be present whenever it seemed like Maizie was present with me. It was as if she was suddenly there with me and noticing me and everything was made wonderful again.

Every time Maizie was "well" I thought the difficult periods of time were gone...forever.

Time would pass and I would watch other moms with their kids and ask questions like this?

So...your baby takes naps? How long does he sleep for? Does he ever wake up and scream for hours? Does your baby throw up a lot? Is it hard to get your babies attention on some days? How do you seem so awake and with it when I am so tired with just one baby?

Eventually, I stopped asking the questions because the looks, advice and comments I got in return were too painful. It became evident that my friends were not experiencing what I was with Maizie.

There was never a moment where we had any answers in regards to sleeping and Maizie. Over the years she has had two sleep studies and neither showed anything worth while. It was not until Maizie was three years old and was unable to sleep for three days straight that the doctor's took notice.
Over time Maizie has begun to sleep better. She slept through the night for the first time when she was eight years old. Up until then she would wake up from about one in the morning and stay awake until about four and then sleep until six and stay awake all day. During this time we tried many ways to get her to sleep but eventually we stopped and just let her do what she needed to do during these hours. Sometimes she would color, play or watch cartoons. I remember baking and cleaning the house at three in the morning just to stay awake.

At three o'clock this morning I came downstairs to find Maizie sitting in her favorite chair. She had eaten an entire bag of beef jerky and three Slim Jims. The smell of the meat about sent me over the edge. Both of these foods are not allowed on her migraine diet. We allow them sparingly. I removed all the wrappers, covered her up all cozy like and encouraged her to sleep. She always says, "I am waiting for it!" I feel like I am always waiting too.

I imagine as an infant these long screaming bouts were due to the CVS? A correct diagnosis may have made everything different. And yet, with the diagnosis of CVS, Autism and her extra chromosome 6 we still find ourselves doubting. Are we missing something? Sunday was a really long day. Maizie was in intense pain all day. Monday was a bit better and today was okay as well. She seems tired though. I remember her like this as a baby. Sickness followed by a few days of not really being present in the moment. She is tired. I asked her how she was feeling this morning and she said,"Stop asking me that! You might make me worry and then it will happen." These ongoing bouts of CVS take their toll and insomnia does nothing to help.

When an infant/toddler/preschooler is screaming and in ongoing pain there is a reason for that pain. If someone is telling you it is your imagination or your child is just being stubborn or manipluting...run...run far away and don't look back. Go to the next professional and if they don't listen move on to the next. Never hesitate to fire a doctor, therapist or counselor if they are not taking your child's pain or situation seriously. People will talk about you, say you are paranoid or obsessed. Let them.

Moving At A Snails Pace with Cyclical Vomiting Syndrome

Last night I threw some lettuce and carrots in for our snails and found myself staring at them for over an hour and a half. Either I really am that tired, there was nothing on television, or my little friends were helping me relax. I had no idea time was passing. I found myself saying things out loud like, "Oh...my...God! That is so weird." "What the hell is that?"

Just when I was starting to adjust to Maizie being out of the cyclical vomiting cycle it hit again. Last week she had one day where it hit. Yesterday it happened in the morning but she seemed fine by one in the afternoon. I had a meeting at church and Chloe was wanting to have Maizie over to play so I was happy to oblige. Susie is feeling a bit better after her surgery and was certain she was able to watch Maizie. About forty minutes after I left Susie called and told me Maizie was sweating, out of it and in a lot of pain. Big sigh. Two episodes in a day was not a good sign. I always leave Maizie with her Kytril and Zofran. Susie is great with Maizie. She gave her the medications and assured me it was okay to finish the meeting.
When I returned Maizie was perking up. Chloe was about at her witts end having to wait for so long to play with Maizie. Finally, the girls played. I enjoyed pizza and hanging out with Tim and Susie. With Joe off in California it was so nice to visit with friends. I was beyond surprised when I looked at the clock and saw it was almost eight at night when we left. When the CVS strikes everything slows down to a snails pace. This morning I was hopeful when we reached ten and there was no sign of the CVS monster. Within minutes of feeling this hope Maizie looked at me and said, "I am sorry to say this. My belly hurts." Sigh.

The pain Maizie had today was intense. I called the neurologist and she increased her Topamax by starting a morning dose. Yes, we are still trying the Topamax. It seems that we are having some success with it since she is not vomiting as much with the spells and they have been less frequent. I really don't know for sure if it is the medication helping.

By four o'clock today Maizie began feeling better and wanted to leave the house. We headed off to the dog park. It feels as if Maizie and me are moving in slow motion. We get a little bit ahead and make it to the surface...enjoy some deep and wonderful breaths and then fall back to the bottom again. It reminds me of the snails slowly making their way around the tank. At the top they take in air and without notice they quickly float to the bottom again. But, I will say they do so with beauty and grace. And so we try to do the same.

“In philosophy if you aren't moving at a snail's pace you aren't moving at all.”
Iris Murdoch (British Novelist and Philosopher, 1919-1999)

"Time sometimes flies like a bird, sometimes crawls like a snail; but a man is happiest when he does not even notice whether it passes swiftly or slowly."
Ivan Turgenev (Russian author, 1818-1883)