What a difference 6 years make. Morgan's last sleep study was right after she turned 2 years old. It was her third one in her 24 months of life. When Morgan was born 8 years ago, I didn't know about blogging or have the support of more than 200 friends on facebook who also had a child with Down syndrome. But I did have books on Down syndrome. Books that focused on the potential health problems associated with Down syndrome. I wanted to do everything that I could for Morgan and wasn't sure what I was supposed to be doing differently with her. I kept waiting for her Early Intervention specialist to let me in on the secrets of parenting a child with Down syndrome. They kept telling me the same thing. Treat her just like you did your other children. Sing to her. Rock her to sleep. Feed her. Love her. Read to her. Play with her. Remember she is just a baby. I now know they were right on with their advice. But a lot of those first years were focused on other things. Heart surgery. Tube feedings to help her gain weight. Physical therapy. Speech therapy. Occupational therapy. Doctor appointments. Waiting for milestones. I would do it differently if I could do it all over again. I wouldn't have worried so much about gross motor development and physical therapy. And I wouldn't have assumed she was going to have every possible health complication associated with Down syndrome. I remember one time when my mom was rubbing her back and I kindly mentioned to her, "my book says that most babies with Down syndrome don't enjoy being tickled. It's too much of a sensory overload." She quit tickling her back after my not-so-subtle hint. I have now learned to let Morgan tell me the things she does and doesn't enjoy. And it just so happens that one of her favorite things is having her back tickled.
Among many of the possible health problems listed in my book was sleep apnea. The medical authorities in the book suggested a sleep study by the child's first birthday. I think that was right around the time Morgan had her first one. She screamed and screamed for at least 4 hours and then finally fell asleep. Unable to breathe out of her congested, snotty nose as a result of crying for so long. I don't remember the specifics of the results from that study but I do remember she was de-satting a little bit and holding her breath at various times during her sleep. They also mentioned she wasn't getting enough rem sleep and staying in too deep of a sleep for too long. Um, yeah, she was just a little exhausted after screaming for 4 hours with restraints on her arms and not being able to suck her thumb. They suggested a follow up sleep study in a year.
We went back and had a similar experience. She screamed for a few hours and I decided I was going to take her home. I went and told the tech and they got a sleeping pill ordered for her. She finally fell asleep. Her results showed mild to moderate sleep apnea but her oxygen levels were borderline which meant she didn't need oxygen or cpap. They recommended having her tonsils and adenoids removed and then a follow up sleep study.
She had the surgery the next month. I love this picture! This is in the exam room while we were waiting for the doctor to come and take her into surgery. Gavin decided to try out some of the equipment and Morgan not appreciating being his student.
The follow up sleep study went much better. They gave us a prescription for a sleeping pill that she took before we left for the hospital. They got her all set up and she fell asleep pretty fast. The results showed mild sleep apnea with improvement after the T&A with a recommendation of annual sleep studies.
So like an obedient, compliant parent, we took her right back for her annual sleep study. 6 years later. I just kept putting it off, not wanting to do it again. And it didn't help knowing that it's an expensive procedure. But it just seemed like it was the right time to do it again this year.
I didn't say anything to Morgan about it until a few hours before we were going. She was not happy about going to the hospital. I promised her there would be no pokes, no owies, no shots, just stickers. About 15 minutes later she said, "Guess what, guys? I'm not sick. No hospital today!" We checked into the hospital at 8 pm. They let her pick out a few movies to watch while she fell asleep.
Excited to be able to watch Barbie Nutcracker and Shrek 2 in the comforts of her new bed. She started asking for food. Your child has been in the hospital too much when they know they get to order food from their bed. Unfortunately for Morgan, food service to your room is not part of the sleep study program.
She didn't want the techs to touch her with their soap. She's heard those reassuring words too often. "Just a little cold wipe to clean your skin" only to be poked for an IV or blood draw seconds later. We soon learned the only way those leads and stickers were going to get on her legs was if she did it. It kept her busy and distracted enough that she didn't even seem to notice the tech covering her head in leads.
Another improvement since the last time we did the sleep study-- an iphone to distract her while they got her all hooked up.
All ready for bed!
She did so well. We ate some fries. Watched Barbie. Told her a few bedtime stories and off to sleep. The techs came in every few hours to adjust stuff and woke us up but other than that there were no complaints. They came in at 5 in the morning and told us it was time to wake up and go home. Then a lady came in the room and poked Morgan's finger for a carbon dioxide level. I felt so bad after I had promised her no pokes. She took it well and was excited to go home and go back to sleep in our big bed.
Now just waiting and hoping for good news.
Updated post after several comments about their doctor not ever suggesting a sleep study for their child so their child must not need one.
