Where I've been hiding

Wow, July came faster than I expected. Earlier I shared some of the fun that we have been having so far this summer, but lets be honest, it's not always all fun and games around here.

Sissy continues to be our little medical mystery. A couple months ago we noticed a big change in her night time and day time sleeping patterns. She was waking several times during the night and only sleeping for 30 minutes at a time during naps. She also began snoring some, which was also discussed at her IEP meeting in May. After some online research and checking with my "Special Needs Mommy Network" I thought she may need to have her tonsils/adenoids checked. We met with the ENT that placed her bilateral tubes (March 2010) and he felt that Sissy's snoring was due to her low muscle tone and did not feel there was any cause for concern, recheck in 3 months. That didn't sit well with me, because there is never a simple answer to anything Sissy is doing. So, I spoke to her pediatrician and he suggested that we consult with a pediatric sleep disorder doctor here in town.

We met with the only doctor that practices pediatric sleep medicine in our entire state and he offered us some suggestions on how to improve Sissy's sleeping habits, asked us to fill out a sleep log for the next four weeks, and ordered an overnight Sleep Study at the hospital to see what was going on with Sissy while she sleeps. The sleep doctor was very helpful and understanding, just another reason why he was added to our "Dream Team" of doctors (we really have been very lucky with referrals, again we love our pediatrician). He even consulted with our neurologist to add an EEG to the Sleep Study. Go Team Sissy!

The sleep log was very helpful for us, and you know how much I love a chart to follow! The hardest part of the sleep doctor's advice to follow was what to do when Sissy did wake in the middle of the night...let her cry it out so she can learn to sooth herself back to sleep. What??? Sissy does not cry often, but when she does it breaks my heart in a million pieces. To hear her "cry it out", especially at 3:00 am, would be one of the hardest things I've done so far with her. And remember, she has been through A LOT! We don't just let her cry for hours (although it feels like that some nights) but we are no longer taking her out of her crib when she wakes up. We come into her room, give her a little reassurance, tuck her back in and walk out of her room. We do this several times, at different time intervals, until she falls back to sleep (or in her case, gives up).Surprisingly, it only took us about a week to get her to sleep from 8:00 pm to 6:30 am 4 consecutive nights! Woo Hoo, good sleep all around makes a much happier family!

The biggest change we noticed (besides the extra sleep and decrease in bags under my eyes) was Sissy became more alert during the day and began showing improvement in her muscle coordination. Sleep = Progress, duh! She has also been babbling non-stop, it's so fun to watch her "talk" to her friends at school. Here is a video of Sissy pulling herself up to sit, her newest accomplishment!

Sleep Study Sissy and I arrived at the Sleep Lab at the hospital for her 8:00 appointment right on time (I'm almost always 5 minutes late for everything lately). We were greeted by the technician, Maggie, and my nerves were immediately calmed. She was great, took extra care in explaining what was going to happen, and Sissy showed her approval of Maggie by grabbing her hand and not letting go. Sissy has had 2 EEGs previously (one at 2 days old and one last November, 18 months old). The Sleep Study leads were much easier to put in place than the EEG leads, but obviously Sissy was comfortable enough to fall right to sleep...

Sissy fell asleep while the tech was placing the leads on her head

Once the leads were in place (I didn't get a picture, but imagine a cluster of tangled wires attached to your child's head on one end and a box on the other) Sissy woke up, MAD! She started pulling at the sensors on her face and the poor tech must have come in 5 or 6 times to re-tape Sissy's little hands. She is quite the wiggle worm, I think I will add Escape Artist to her list of career possibilities. I slept long enough to feel like I just fell asleep, when Maggie came back in the room and said we could go home. It was 5:30am, ugh! Maggie removed all of the leads and sensors from Sissy, handed me some Joy dish soap to wash the goop out of Sissy's hair, and said we were good to go when we were ready. **You read that right Moms, Joy dish soap was able to get ALL of the goop out of Sissy's hair with out leaving it coarse or sticky!**

Results So, fast forward to a week and a half later and we are back in the sleep doctor's office receiving the results from the test. Obstructive Sleep Apnea, not exactly what we were hoping to hear, but like every other report we have received in the last two years, we ask what's next and move forward. The study showed that Sissy's snoring is related to a collapse or blockage of her airway while sleeping, and she is having on average 10 apnea episodes an hour during sleep (moderate range, severe being more than 15 episodes per hour). Common causes could be enlarged tonsils or adenoids and/or low muscle tone. We were referred to another ENT to discuss removing her tonsils and/or adenoids. If they decide to remove them, she will have another sleep study two months after the surgery to see if that fixed the apnea problems. We will worry (out loud anyways) about what is next if she continues to show signs of apnea during the second study.

Apparently my camera lens needs cleaning, but the smile is still pretty darn cute

This face makes all the tests, worry, and trials worth it. For now, it is two steps forward...praying there are no steps back.