Friday Fluff - N - Stuff

Just thought I would go over a few random things that are on my brain for the end of the week.

This Sunday, Jeremy and I will celebrate 12 years of marriage.  I can't believe it has been that long and yet sometimes it feels like it has been decades longer.  We have had some rough times as of late, but we are making it through, side by side.  We committed to each other, for better or worse, all those years ago and we meant it.  Little did we know what would lie in store for us down the road, but God blessed us with each other and that is how it will stay.  For better or worse.  God knew what He was doing when He put us together.  

I love you Jeremy, more now than ever before.  You are the greatest daddy to Marissa I could have ever hoped for and you still love me after everything we have been through.   Thank you for sticking it out with me, for better or worse.

Marissa and I have had a couple of big struggles lately.  First is the nap thing.  She is driving me over the edge on this one.  Every. Single. Day.  She just does not want to settle down and take a nap, at least not without a major fight.  She constantly moves to keep herself awake.  She plays.  She talks.  She moves some more.  I have to sit in the room with her until she falls asleep because, if I don't, she will stand up in her crib and NEVER go back down.  I have tested this and she has stood on her feet without even sitting down for two hours straight.  So I sit in the rocking chair in her room and at least she will lay down.  Then, she finally stops moving and lays perfectly still.  I can finally see my freedom.  She lays still for 5 minutes and then, like a cruel, sadistic prison warden who dangles the keys in front of a weary prisoner's face, she sits up and starts playing again.  Tricky tricky this little one is.  She goes through this cycle at least once, if not twice more and then either falls asleep for good or I give up on nap time, unhook her from her machines and leave her in her crib for some "quiet play time".  Which is actually more like "mommy needs to regain her sanity time".  I just spent two hours in this ritual.  And it's not like she doesn't need a nap.  Even with quiet time but no nap, she will get grumpy around 4:30 and be almost unbearable until it is bedtime.  I have tried every trick in the book.  From a little friend named Mr. Ben A. Dryl (I gave her a teaspoon just before nap time on Wed. just to get her back into the routine of taking a nap.  She would not nap on Mon and Tue.  Don't worry, I am not going to make drugging her a habit!) to driving around in a warm car, to soft music and cuddle time before putting her to bed.  I've tried it all.  I am hoping and praying that this is just a phase and she will get back into the habit of taking naps again soon. 

Our second big struggle is her trach cap.  In the last couple of days, she will not leave it on.  She is not bothered by it, quite the contrary.  She is doing very well with it and is even starting to cry better with it on.  She just knows it bugs us to no end when she takes it off and wings it across the room.  This kid has got a heckuva arm on her!!  Just last night, about 10 minutes before bedtime, she took it off and threw it with a great deal of force at the closet.  Jeremy and I both saw and heard it and it looked and sounded like it bounced off the closet doors and went under the bed.  It was not under the bed.  Or anywhere in the area of the bed.  Or anywhere else in the room.  15 minutes later, after emptying the closet and shaking all our shoes out, Jeremy finally found the cap in the back corner of the closet.  Then, he set the cap on the bed, about three feet from where she was sitting and went in the other room to get a diaper.  I was sitting on the bed with her, but obviously not paying close enough attention because she crawled over to the cap, picked it up off the bed and threw it across the room!!!  AAAGGGHHH!!  It wasn't even on her trach!!!

We have tried scolding her, putting her in time out and ignoring her and just putting it back on, which we know is the right approach.  But nothing works!!  I know she is just challenging us and seeing where her boundaries are and that ignoring her bad behavior and not rewarding her with the attention she wants is the right way, but damn she is aggravating!!  

Monday is Marissa's ENT appointment with Dr. E, Dr. P's replacement.  I think he is going to scope her through her stoma without her trach in place while she is awake and agitated so he can see if there is still some tracheomalacia present.  I am hoping he will also scope down through her nose with her trach in place and capped so she will show him what her airway is doing when she is capped and agitated.  I am not sure I am prepared for the results no matter which way it goes but we do need answers.  Dr. E tends to be a little more cautious than Dr. P, so my guess is that we will hear from him that she should not be decannulated until next year.  I should not jump to conclusions but I think this is my way of preparing myself.

I want to leave you for the weekend on an up note, so here are a few pictures from the last couple of weeks of our sweet and funny Rissa Roo: