Longest in a long time

 

Braska had some kind of weird night. It started yesterday afternoon.  She napped ok at Auntie Rachel’s while I was taking care of some things there.  Then she woke and seemed “off” or not herself.  She had a GREAT day at school yesterday, by all accounts, doing really well with feeding therapy (yay!) and classroom.

We came home about 6 p.m. and she spent the evening very agitated. She didn’t want anything we offered. She acted exceptionally fidgety and had the sad, pouty face a lot.  She would flop on the floor, roll around and whine, then get up and take a few steps before flopping again.  When we would try to hold her, she’d squirm and then slide down off our laps. Everything we asked her about received a “No, not yet,” response with a very pathetic tone.  A few times she was knocking her head against the cabinet in the kitchen while I was there, and then the stove.  She only did this a few times, but I didn’t care for it one bit.

At one point, I was able to distract her with the sight words flashcards that she loves, and she seemed to kind of normalize for a few minutes, but then she returned to the highly agitated state.  She didn’t seem to be in pain, per se, but she was clearly very uncomfortable. 

We tried to put her to bed, but she thrashed around in her bed and would not settle down.  She didn’t cry, but grunted, sort of.  She didn’t grind her teeth, which I found odd, because that is almost constant when she’s tired and not feeling well. After about two hours, I got her up and rocked her, thinking I could help her calm down.  She went to sleep after I had held her pretty snugly and fought her fidgets.  (We do occasionally have to do this, hold her tightly and kind of assist her with turning off for the evening.  I’m sure it’s a sensory thing as well, but it’s usually easily dealt with and over for the night.) She gave up and went to sleep, but as soon as I laid her down, she was awake and upset again.  This happened several times. 

I took her into to my bed, thinking I could lay with her next to me and hold her tight to go to sleep, then she could just stay there instead of being moved.  Unfortunately, that means I do not sleep.  Even when she is sleeping well.  I just hear every breath and sound and wake with all of them.

But she did not sleep well even in our bed.  I tried every kind of pressure on her, including wedging her between me and a very heavy feather pillow.  It was clearly a sensory issue, in my opinion. It was like she could not stand being in her own skin.  She just could not get a moment’s reprieve from whatever was bothering her.  She would sleep for about 15 minutes, and then wake thrashing again for the next 30.  Then more sleep for 15 minutes, and on and on it went.  We even gave her a small dose of melatonin and it did not help one bit.

Several times I tried to take her pulse to see if her heart was racing.  But I literally couldn’t get her to be still long enough to get it.  Her respirations were definitely faster than usual, but not rough or labored.  It was really bizarre. And it just kept on.

I curled up at the end of my side of the bed and tried to sleep, but it just wasn’t gonna happen.  I did get a few little spots of 15 or 30 minutes at a time…not nearly enough.

About 3 a.m., I changed her diaper while she was thrashing and already awake.  (She’s been overflowing diapers at night lately…can’t have that in our bed!) She went back to sleep after some more tight rocking, but it only lasted about 30 minutes. 

She slept a little longer with shorter bouts of agitation as the morning went on.  And when M got up at 6 a.m. to get ready for work, I slipped into his side of the bed to try to sleep.  She woke about 7:30 a.m. and seems ok.  I can’t imagine how that’s possible.  I’m debating whether or not to take her to school.  Can she possibly be worth anything with so little real sleep? 

I feel completely run over.  And it’s a busy day full of must-do items.  I actually have a scared feeling when I consider getting through the whole day.  Strange.

And it bothers me that I have no idea what was going on.   What in the world would cause a reaction like that?  She had no red dye yesterday, which is slightly like what I would have expected with this reaction.  But it’s still different.  I just don’t know what it was.  And it honestly makes me afraid that it will happen again. 

I hope it was a strange one-time occurrence.

Anyone have any thoughts??

Sit and stay sans dog

Braska's sick. If you're up to date on her blog, you probably got the message.

I don't know how people do it that have lots of sicknesses and issues that mess with the kid's sleep patterns! The norm for this kiddo of mine is that we have the night-night routine, p-jammies, kisses to Daddy, thank you prayers for all our blessings, and then I simply put her in bed and she's still and out within minutes. That's how it's been every night since she was about 2 months. Sure, there was the period in there between 2 and 3 months when we still had to do feedings at night via the NG, but she didn't wake up for those. We've been sleeping peacefully through the night at our house since immediately after surgery at 3 months. I know that's a HUGE blessing and not the norm, from what I hear, but I like it alot.

Last night I put her down in the normal manner here at the in-laws' place, in her pack n'play that she always sleeps in here. She went down and went to sleep. About 30 minutes later, she's crying. Now, I admit this has happened maybe 5 or 6 times randomly over the last year, but it's quick, she's easily calmed, and back to sleep she goes. Last night, it wasn't so easy. She went back down, but then was up again in another 15 minutes and then 15 after that. At one point she had a messy diaper, which is very weird at night--plus she'd already gone once and that's above average in a day--so I wondered about it, but she went back down. The next time, I just calmed her, then picked her up and held her while she went back to sleep. From that time on, she slept on me when she slept. I tried to put her down a few times when I thought she was good and out, but she woke immediately and squirmed around strangely so I picked her up again so as not to wake the grandparents.

So there I was, in the middle of the night, propped up in bed holding a lightly sleeping, very restless little girl. As long as I stayed very still, she did alright for 30 to 40 minutes at a time, and in a few of those, I think I dozed off, but I am famous for waking at every movement of hers, even when she's in the next room. You can see how that might make sleeping in this situation difficult. Unfortunately, I'd enjoyed a few too many Caffeine Free Diet Cokes last evening, so I had to get up twice to use the bathroom while not setting her down. I'm so glad it was pitch black, because seeing the whole things would have been disturbing for me, I think. But she managed to stay calm, even though she woke up, as long as she was plastered up against me. What a multitasker I have become!

I decided to try to give her a little bit of warm food in her tube at about 4am, thinking it might settle her and help her calm down. That whole transition resulted in a screaming fit that brought Grandma out to check on us. I was debating taking Braska to the ER at that point, as her fever was definitely the highest I'd ever known of, even though our silly thermometer that I carry wasn't working right. She was hot, that was obvious. Grandma C graciously offered to sit up with her and hold her while she slept so I could try to get a bit of sleep. I do NOT function well at all on no sleep, and although I was afraid I wouldn't be able to turn off my brain, I decided to try to sleep and let her sleep to see if things improved with a little more time. Of course I'd forgotten to bring the Tylenol along for her. Figures.

This morning I sat up quick at 7 am, a little surprised I'd slept, but feeling a little better. Braska had slept the whole time on Grandma, and though she still felt warm, it didn't seem as high. I jumped in the shower and dashed up to Walgreens to pick up some Pedialyte and Tylenol for her. I gave her a dose and she's been sleeping still ever since. I hope she can just sleep it off, but I don't like this at all. It just feels so helpless. I don't like not knowing what exactly needs to be done to fix things. I know in the grand scheme of things, this isn't the end of the world, but it's no fun, that's for sure.

Think back. Move forward. It's time.

Today I was catching up on my DVR recordings...I set it for lots of stuff, but don't have time to watch so much of it. Something most people close to me know--I'm kind of a "church nerd," you might say. I like good sermons. I love going to hear great speakers challenge people. And I like listening to Christian talk radio...it's one of my favorite things about going back to St. Louis for visits and appointments...I always get to hear something that I really needed at that exact moment. I like listening to speakers who tell me things that challenge me and help me grow.

One of the guys that I listen to alot is Dr. David Jeremiah. I don't agree with every little thing he says or philosophy that he holds, but he often deals with things in a manner that makes very clear which areas of my life that I need to evaluate and improve. His style of presentation is very straightforward, which is what I like. Some people like a happy comfortable sermon or topic, but I prefer the ones that step on my toes and make me take a hard look at myself. (I have not always liked this style, and it's still a little interesting to me that I do now. I think it's because I've seen how the heartbreaking can bring about the beautiful.)

So I've got my DVR set to tape Turning Point with Dr. Jeremiah each Sunday morning, but I usually don't get to see them until they are many weeks old. The last couple of days, though, I've made a point to try to catch up on them while I'm pumping or feeding the poonchin. There have been several great messages in the ones I've gone through: One about the example that Joseph's life shows us in how difficult circumstances are used by God to prepare for ministry to others and victorious outcomes. It was a good one. I needed that one.

This message I've just finished was called "Think back...Move forward... It's time." It's from the 9/11 memorial, where Dr. Jeremiah recently visited. But I agree with him that it's a fitting thought for everyone. Thinking back and remembering is important, even if painful, in that it reminds us of how far we've come and what we've endured. Yet we cannot live there, in the past, regardless of what it looks like. We must move forward. And now is the time to do it.

Thinking back is not always on bad times. Sometimes it is in dwelling on a very good period that makes us discontented with our current circumstance. It is not only the painful past that must be left in the past, but the glory days, although appreciated and enjoyed, must also remain where they live. Many of the most difficult moments in my life stemmed from one's inability to let go of a fantasy from many years past and deal with the reality of today. Most of us loved being 19 and free, able to do whatever we want. But to be angry about the loss of that perceived freedom to the detriment of the blessings that are being allowed to pass by unnoticed in the present...this is a tragedy of the saddest kind. Move forward, it's time.

For me, this is paramount to my survival and my sanity. I could dwell on the disappointment of my daughter's Down syndrome diagnosis and all that will mean, or I can enjoy her for who she is...exactly who she was meant to be...and be blessed by her joy, her charming smile, her adorable giggles, and the irresistable cuddles. There will be trials, but we keep moving forward.

I have endured more heartache than I would have ever believed was possible. I have a horrible habit of spending too much time thinking back, hurting through the painful moments all over again. Why did it happen? How could I have stopped it? Why didn't I see it every time? What did I not see that I don't want to miss the next time? What if there is a "next time"? How can I possibly recover? Will I ever trust again? Will I ever be able to function normally? Dr. Jeremiah had two points that spoke clearly to me...It's right to think back, but not right to GO back. It's right to look back, but not right to linger. Looking back, I can praise God for bringing me this far, but I must not linger there. I must move forward. Life may never be the same, and it may even be worse before it's better, but I know that HE will see me through. He simply asks me to move forward, trusting Him. The rest will fall into place according to His plan, the BEST plan.