Pea of Sweetness

Our toddler's Sleep Study

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So last night our toddler had his sleep study. I know I’ve posted a few times about his sleep concerns. Some of them are related to his Sensory Processing Disorder, but because he does snore we knew it was best to make sure something physical wasn’t going on. He also has a GI appointment coming up for a swallow test due to choking while he drinks and gagging often. So, in my mind, I was thinking perhaps there is a relationship between the two. Of course, when you have children with an ABC of diagnoses it can be hard telling what is related, what is separate, what is co-morbid, etc. So it’s best to always get everything checked out and not assume anything until you know for sure!
I have to admit, I was REALLY nervous about the sleep study. I had already expressed my concerns about his SPD and how that may make things a little more difficult. When they told me everything they were going to hook up to him I was extremely nervous! He generally doesn’t even let doctors listen to his heart without having a meltdown! They can rarely ever even get his vitals most of the time! He does a little better when our other two kids are with him because it helps him to feel more comfortable, but obviously for the sleep study that wasn’t an option! I had so many people offering encouragement and saying how well their kids did, etc. I tried to let it put my mind at ease, but at the back of my mind I couldn’t help but wonder – do they have SPD? Will that really play a big role? Like or not I was going to find out!

Toddler Sleep Study
Getting Settled in for the Sleep Study
When we got there he had just taken a 15-20 minute nap in the car, so we were already set up for a difficult time! We got settled in and met his sleep tech, who was very sweet and understanding! I explained he has SPD and doesn’t do well with people touching him, etc., and she tried a few things to get him to respond, to which he just bulked at her. It was decided it would be best to wait until he was asleep! Surprisingly, he went to sleep quickly!  So, she and another tech came in to start hooking him up. As soon as the other tech touched his legs, though, he jumped up screaming and ripped everything off. :/ I wasn’t surprised because he is VERY sensitive to touch in certain areas, and his legs are definitely a sensitive area! So, it was decided to wait longer. Because of the disturbance, though, he got his “second wind” and was just absolutely wired! He was playing and running and making silly noises. Around 10pm it was decided they were going to go ahead and start the video recording so they can at least see that he is bouncing around – and because if you don’t get 6 hours of recording time they bill you instead of your insurance! EEK!
Somewhere between 10:30pm and 11pm ANOTHER tech decided she was going to step in and “help” our tech by doing it her way. It was AWFUL. At first she was talking nicely to him and trying to coerce him into putting the stickers on, but he just wasn’t having it. I tried to explain SPD, but I’m not sure she even listened. It got to where I actually had to hold him down while they put the things on his head. They opted to do a modified version meaning less wires on his head, none on his legs. It was so, so awful! He screamed and fought. I was already in pain when we went in there, so that was just absolutely exhausting to me both physically and emotionally. I kept telling myself, though, it will be worth it to get answers, so I kept comforting him through it. It was SO hard for me as the tech that doesn’t understand SPD is telling him “it doesn’t hurt” and “he’ll fall asleep soon, he’s giving up” because it just wasn’t true! Things that don’t hurt sensory normal people can be absolute TORTURE for those with SPD! As far as falling asleep, though, yeah, the more stimulated he gets – no matter how tired he is – the longer he will stay awake. Sure enough he was up until midnight after that! I felt so bad for him because he kept telling me he hurt and just wanted everything off. 🙁
Toddler Sleep Study
I was so glad that once he fell asleep he mostly stayed asleep. He would wake up often in a startle, which is normal for him, and I’d have to keep him from pulling on wires and particularly the tube in his nose. Needless to say, even though he did seem to sleep well, I got hardly any sleep AT ALL! Then somewhere around 4am he turned over and hard, which caused the box to fall on the floor, and it stopped working! I was so nervous! I was seriously thinking please let this not go to waste! Our tech was going to switch it out, but she was advised by the other one that had been “helping” to just leave it alone so they could watch him sleep through the video. I really felt bad about that answer, but I was hoping for the best! So then I couldn’t sleep because I was sick with worry that this would all be a waste! I was just having a really hard time with all of it.
Around 6am he finally got everything taken off. Again, our tech was gently removing everything, and the other one came in and pulled off everything quickly! I was still half asleep and I hear my poor little guy SCREAMING that he hurt! It was terrible!! Our tech apologized a million times when it was all said and done and said that is not how she likes to do things and she knew of my concerns and was very sorry for everything. I was just hugging our little guy and soothing him until he went back to sleep. I was heartbroken for him. As if it’s not hard enough for him as it is! He did go back to sleep, though, and slept until 9am, so he got a few hours of sleep without restrictions of wires and irritations of everything for which I was grateful!

Toddler sleep study

We finally got to see the doctor around 11am after many attempts from the nurses to take his oxygen levels again. They finally got one! You can’t blame him, though! He doesn’t like being touched anyway, but after his experience that night and morning he REALLY didn’t want to be touched! He even flipped out about ME touching him sometimes, and that isn’t like him AT ALL. He was ALL out of sorts. After speaking with the doctor I was informed he had 4 breathing “concerns” during which his Oxygen did drop – 93 at the lowest. BUT she felt she did not have enough data to make any specific determinations. My heart sank. My worst fear was that there wasn’t going to be enough after the machine had stopped working and that was confirmed! She did ask if midnight was his “usual” sleep time to which I explained it’s not totally uncommon for him to stay up that late, but it’s when he experiences a lot of stimulation like that.

So the results – I guess you could say inconclusive. UGH! The follow up? A day time sleep study next week! Double UGH! We will be calling them tomorrow voicing all of our concerns about our experience and about our concerns of having him go through something like that again! If they truly think it’s his adenoids and/or tonsils (this was mentioned) then we could follow up with ENT or even talk to the GI about it for the swallow test. I just don’t want to can’t put him through that again if we can get answers another way or even if there is enough data for a referral to a specialist that may be able to give us answers! So, I suppose I will have an update after we speak with them, but as of now we’re scheduled to have the sleep study during the day next week! Please keep our little guy in your prayers!

Catching Up… Again

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I feel like I was finally catching up on things when we went out of town for a few days. We had such a great trip visiting family and friends it was hard to come back! I was able to post my Fishing Fridays because I had great reception at my Grandparents’ Lake House, but once we got to my Mother In-Law’s house, my reception was in and out. The internet stuff wasn’t going so well for me! So I ended up not being able to do much! Now we’re home again, and already loaded with doctor appointments and other things, but I’m going to work hard to catch up again! I haven’t been sleeping well the past few nights, which doesn’t help! I think it’s a combination of nerves knowing my husband’s Medical Retirement from the military is getting closer to the end and planning what we’ll do and where we’ll be moving after. We looked at houses while we were over in the Houston area as well, so I think that made it feel more “real.” Are we really going to be “settling” soon? We may end up having to rent for a little bit until we can get the VA loan, so it still won’t exactly feel like “settling,” so I do hope we’re able to pull some things together to make buying a house a possibility sooner! Even before my husband was in the military we moved at least once a year – sometimes more! Even though we were at his last duty station for 3 years we lived in 3 different homes! The longest we have ever lived in the same house/apartment/duplex is one year and a few months. Moving is EXHAUSTING – especially when you have kids and pets! I know many people in the military that do DITY moves (you move yourself), and we had to do that twice, and I don’t know how people can do that for every move! Sure, we had a few issues when the military moved us, and it was still somewhat exhausting, but SO much easier!! I know for sure if we could go straight to buying a home that would be such an amazing blessing!!
Well, I’m off to the littlest guy’s sleep study consult! It’s been a long time coming, right? haha I’m still curious how the actual sleep study will be done since he basically can’t fall asleep most of the time without nursing. I’m definitely curious what they will discover and I pray there will actually be an answer to his sleep concerns and he will begin to sleep well! Not only for my sake (because after 2 1/2 years of getting up every 2-3 hours I’m exhausted) but also for his because I think he will feel so much better, will be able to handle his sensory concerns better, will start to speak better, etc. I think everything will improve if he gets better sleep! We’ll see how it all goes!

sleepy toddler
See how sleepy he looks? This poor guy needs more sleep!

Operation toddler sleeping in his room Update

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Well, since I’m blogging at 1am my time you can probably guess that we aren’t “there” yet with getting our toddler to sleep in his own room – or for longer periods of time. I do feel like we’ve made some progress but I also feel like we’ve had some regression. When it is bed time now he usually does go to his room to go to sleep – with my help. This is definitely progress because before I started this he wasn’t sleeping in his room AT ALL. The fact that he knows this is his room and this is where he should sleep is a huge step for which I’m extremely thankful!

Unfortunately, though, I don’t feel like I can say we’ve totally reclaimed our bed. When he was sick he was waking more often and I just got too tired to keep getting up and going back to his room with him to get him back to sleep. I just ended up letting him sleep in our bed. I know that’s the wrong answer, but I think you have to be the situation to truly understand how tired I was and how sick he was. I still initially put him to sleep in his room, though, so I didn’t let the routine go to waste! Shortly after I got sick (it’s still lingering actually), so again he was sleeping in our bed more once he would wake. I was so run down I didn’t even want to nurse him back to sleep, so he actually started cuddling with my husband to fall asleep! I am hoping this doesn’t become a new habit because I’m not even sure how we would address that one! It’s all so complex that sometimes I do get frustrated by it, and I often feel I can’t talk about it for fear of what people would say or advice they would give because they don’t understand Sensory Processing Disorder and, in turn, they don’t understand him! I’ve noticed a lot lately I have a weakness for worrying about what others think! It’s definitely something I’m praying about a lot and working on!
As far as the not staying asleep issue we have a referral for a sleep study. More than likely it’s due to the SPD but you never know, so I think it’s wise to rule out other things. He will be having a swallow study soon as well to see if we can find answers as to why he chokes and gags so often. That could also be related to the SPD but because he also has trouble speaking (his speech is often nasal, and he has a severe articulation delay) there might be other things going on. So, I’m praying we get some answers so we know how to best help him! He’s been doing great in Speech Therapy and is progressing a bit slowly in his Occupational Therapy but progressing nonetheless! I am confident being proactive about getting him help will be so beneficial that I’ll look back on this one day and say I hardly remember it! 🙂