Well, the day finally arrived that we were able to travel down to Madison, WI to have a sleep study done for Taleigha (on Monday 12/12/11). It was quite the adventure, to say the least. It was a difficult day, but nothing that I didn't anticipate. Taleigha was a little trooper, I must say, but I didn't really expect anything else in that regard either. When we got there, it was right to business. We were taken into a "suite" at the clinic and the tech started hooking Taleigha up to all of the probes that were needed for the study. It seemed as though there were a million of those things. Taleigha did great during this process. Probably better than I, myself, would have even done. She had the hardest time with the breathing sensor that needed to be placed just below her nose (like an oxygen tube would be placed). She did not like that at all. We couldn't get her to keep it on, so we waited decided that we would just wait until she was in a deep sleep and try to put it back on then.
After Taleigha was done getting prepped for the night, it was time to try and tuck her in. It was so hard for me to see her at this point. I knew that she wasn't getting hurt and that she was safe, but when she looked at me with fear in her eyes, I had a hard time holding myself together. Daddy and I gave her kisses, and had to walk out of the room. I just couldn't help but feel for her at that moment. She's little, and she didn't understand what all of those probes were that were stuck all over her body... she was in a weird place / room, and she had to be left alone until she fell asleep. She was scared. I was feeling horrible. Once I was outside of her room, I had to let myself cry. I knew that this is what we had to do, but I just wanted to somehow make Taleigha realize that she was safe and ok, but I couldn't.
Taleigha had a rough night that night, and with as much as I hated that, I was also very relieved that they were able to capture the kind of issues we face on a nightly basis. I was awake all night, praying that we would finally get some answers as to why Taleigha might be having so many struggles while trying to sleep. I prayed and I prayed. When Taleigha did wake during the night, she realized that we had taped that breathing sensor under her nose while she was asleep, and she ended up ripping it off. We tried everything we could to try and distract her from the sensor that we repeatedly tried to place back on her face, but nothing had worked. Eventually, we had to make the decision to brace her arms so that she couldn't bend them. This prevented the inevitable ripping of the sensor off of her face. Again, it was so hard for us to see her so upset. But, it was for the best. She was able to fall back asleep, and the night eventually turned to morning.
In the morning, we praised Taleigha for doing such a great job! Like I stated before, she was definitely my little trooper. She was so happy to get all of the probes removed. She ate breakfast, got cleaned up, and it was off for home! Then, it was the waiting game. A game that I know all too well. We had to wait for the results of the study.
We received a phone call a few days later from Taleigha's pediatrician. He stated that he had gotten the report back from the specialist and that there was nothing wrong with Taleigha "medically" that would be causing her sleeping problems (ex: heart problems, sleep apnea etc.), but that it was clear that she was dealing with some kind of sleep disturbances and was not able to get restful sleep. The specialist had recommended some Behavioral Therapy and possible medication. Her pediatrician had suggested that we contact the Developmental Pediatrician out of Madison that has worked with Taleigha so that that doctor could explain in more detail the results and what they mean. I put a call in to that doctor and am currently waiting on a call back from her.
At this point in time, I don't know what behavioral therapy consists of, how it will help Taleigha in the sleep department, or what it even means. I guess you could say, that I still feel just as lost as I did before the sleep study happened. I am hoping that we will get more answers once we can finally talk to the specialist. We have talked previously about the possibility of Taleigha needing medication to sleep, but felt that it was necessary to rule out any possible "medical" issues, which we have now done. Although I am still quite leery about taking that step, I guess at some point, I will have to put some faith in doctors and believe that they wouldn't ask me to do anything that wasn't safe for my child. It's definitely not something I am 100% comfortable in, but need to just do some research and maybe make a decision on this when the time comes.
I know that God is helping me and guiding me,
so I need to give it all to Him.
Sleeping problems...one of the "joys" of CDC. My 3 year old daughter Violet(who has CDC) has been going to a Behavior Therapist for the past couple of months. One of the topics has been sleep. We started with skipping her nap and putting her to bed at 7:00. It worked a couple of days but then she was back to her normal of waking up at around 3 in the morning. Then we put her on 5 mg of liquid melatonin (natural, over the counter). That didn't really work b/c Violet doesn't have a problem going to sleep, it is staying asleep. So now we are putting her down for a nap at 12, and then keeping her up until 9-10 at night, and giving her the melatonin right before bed. Knock on wood, it has been working. She is waking up at a more "normal" time (is 6 normal?:) She still occasionally wakes up in the middle of the night, but it is a lot better than before. Another thing he recommended was let her "cry it out", which I try to do, but with two other sleep kids in the house, I can't do it for long for fear of her waking them up.
ReplyDeleteWhen she is old enough to swallow a pill, they make time release capsules of melatonin.
Good luck to you!
Hi "Crazy Incognito"! Thank you for your comment. I have come to realize that the sleeping problems definitely are one of the joys of CDC! haha. We have tried melatonin with Taleigha... for quite a while actually, with no effect. She too, has the problem staying asleep. She's a little angel going to bed. She usually goes to bed right now between 7 and 8, by her own choice. That is when she grabs her blankie and is ready to snuggle and go to sleep. She doesn't take a nap during the day, because she pretty much refuses. But to be honest, it's almost easier for her not to nap, because she'll sleep for her half an hour and then wake screaming, just as she does at night... and it takes hours sometimes to get her to calm down and get back to her happy little self. We have tried to cry it out method as well, with as painful as that is for me... but that doesn't seem to do anything either. She could scream for hours! Literally. And I agree, it's easier to say, "oh, just let her cry it out", but when there's another child in the home that is trying to sleep, you don't want to have it interrupt. It's just a very difficult problem. I feel like I'm running on empty every single day because of these sleeping challenges!! It's tough. How long can one person go with such little sleep!! I'm hoping things will get better... someday! Thank You!!! :))
ReplyDeleteMy next step is to get a water bed for her... my CDC "mentor" got one for her son and says it worked wonders.
ReplyDeleteHang in there! And get a good coffee maker!