Monday, April 22, 2013

11:45--She is finally asleep!

That was 11:45am this morning.  I'm not sure what is happening with Annalise.  I only wish I knew.  This week, she has had her ups and downs.  On Monday, she went to the dentist and did a fantastic job!  Such a big girl.

After the dentist, we made a stop by the pediatricians office to get a weight check.   Luckily she is holding on to that 3% curve by a thread!  The doctor did say that we may want to supplement her feedings with some pediasure.  She already gets 2 a day.  Even that drives me crazy because although she is getting the calories, I know it is not healthy for her.  The doctor is having us get a feeding evaluation and a swallow study done.  Then we will decide from there what direction to go.

Other than a little bit of allergy issues and some irritability, Annalise had a couple of really good days the beginning of this week.  By Thursday morning, I was almost thinking that maybe I had jumped to conclusions too fast and hoped that maybe we would just see a small regression and she would be fine now.  The roller coaster ride this disease takes us on is so hard.  I remember it vividly in the first few months with Bryce.  One moment he was doing well...we had hope, next moment he had lost another milestone.  Back and forth, sometimes multiple times within the same day.

Anyway, Annalise had a few good days and then Friday hit.  She was back to being super clingy, super irritable, etc.  Not horrible, but obviously something was just not right.

Saturday came.  I spent the morning in Tucson at a conference with Marsha Dunn Klein and then headed over to my niece's baptism on the way home.  When I got home, Annalise grabbed a hold of me and would not go to anyone else.  She was fussy and just seemed irritated.  It's hard to explain, but this irritation/frustration/whatever it is that they go through is different than say a normal 3 year old tantrum or irritability or even the way a child acts when they are sick.  I don't even know how to explain how, but it is different and I have learned to recognize it as that.  She will go from happy and having fun to angry and crying in a matter of seconds and usually for no real apparent reason.

We all headed over to the park to celebrate my niece's special day with my brother and his family.  Annalise settled a little while we were there, ate a few bites of food, had fun going down the slide with Dad and rolling the ball with her cousins.

 Eliza, Maisey, Annalise, and William

She even let Grandma hold her for a few minutes!

Then we came home.  She seemed okay, still a little irritable, but overall okay.  She played for a bit and then I gave her a bath and put her to bed.  About an hour and a half later I checked on her as I was heading to bed myself.  She was fine. By the time I got across the house to my room, I heard her cough and then heard a strange sound.  I went in and she had thrown up.  Now when I say she threw up, it isn't like regular "I have the flu" throw up.  It is hard to explain, but it is different, clear, mucusy, foamy, thick when Bryce and Annalise have their episodes.  (I've seen it with Spencer a couple of times as well, but we are not even going there right now.)  She threw up like this 3-4 more times, slept on my lap for a few minutes and then woke up. This was about 10:30.  She did not go back to sleep for the rest of the night.  Seriously, wide awake all night long.

I held her, we watched a movie, I rocked her, everything trying to help her fall back to sleep.  She didn't.  By this point, she wasn't fussy or anything, in fact she seemed very happy.  She just wasn't falling asleep.  She wanted to play the iPad and I was having a hard time staying awake, so I finally decided to just let her sit next to me and play while I slept for a bit on the couch.  That kind of worked.  I was able to sleep in between times of her waking me telling me all about the game she was playing or asking me for something.  I gave her water throughout the night hoping to keep her hydrated.  Luckily she kept it all down, but she never did fall asleep.  All night long!  Not until 11:45 this morning!  Crazy.

She then slept until 5pm when John woke her up.  She was irritable and clingy on and off all evening and fell back to sleep about 9:00 tonight.  She is still asleep now, so hopefully she will have a better night tonight.  I just wish I knew what was happening in her little body right now.

I dread tomorrow because I will be away from her all day.  As much as she does not want to leave my side right now, I do not want to be away from her for even a second.  I will be having Mohs surgery for a spot of skin cancer on my nose in the morning and then her brother, Jacob, is getting his cast off.  It will be hard to be away from her, but luckily she will be in good hands with some of her favorite people.  I am so thankful for our helpers!  

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