I just could not help it

I couldn't help but take pics of her. She just melts my heart!

 

  See that chipped tooth on the bottom row? She grinds her teeth so bad that she chipped it. Not sure what to do with the grinding issue. She wouldn't tolerate a mouth guard or anything.

 

 

First pic:  The arms behind her head. That's her signature pose. It keeps her hands "safe" from touching anything.

Second pic:  Love her pirate grin!

 

First pic:  Her second signature pose. Loves to rest her head on her arm.  I swear I didn't put lipstick on her, she just has naturally very pink lips.

Second pic:  She just wanted to show off her pink cowboy boots and the fact that she can sit without a chest strap on to keep her up. Still a little slouched over, but she's working on the strength in her back.

 

sleep study results #4

   I got a call today on Sadie's sleep study test results.  The good news:   She is on the right amount of oxygen at night to keep her oxygen saturation from dropping.  She is going to continue to wear 0.5L of O2 via nasal cannula. This way her organs and cells are getting the proper amount of oxygen they need to stay healthy.  The bad news:  Even though Sadie sleeps between 10-14 hrs every night, she really isn't sleeping. Her apnea is so bad that she is constantly waking herself up to take a breath.  Which means she is never really going into that deep REM sleep that you need to fully feel rested. 
   The tech that called me to give the results was a little clueless. No offence to her, but since she really didn't know what we were looking for and about these episodes, she really couldn't answer my questions very well.  She told me "yep, Sadie has central apnea still and 0.5L of 02 will work great for her and keep her oxygen from dropping when she sleeps" (Well great lady, but that's not really the reason that we had this test done). I explained about these episodes and we were trying to see how much sleep she was actually getting a night.  Silence...
   Finally she starts reading the results to me.  In the 10 hrs of total sleep that Sadie had that night only 64 min was the REM sleep. To me that sounds terrible. So I ask "how many min of REM sleep does a toddler need"? She can't answer that question.  "Could the lack of sleep cause such a long periods of time where she could be so unresponsive"? Again, no answer.  I said "where does she fall on the sleep scale good, ok, bad, ugly"?  She says "well I'm no expert, but I would say really ugly".  "Great!  So what is our next step"?  "Sadie will just follow up with the sleep Dr in August".  What?! that's 5 months away?!  I said "there is no sooner appt and wait a minute, we have never seen a sleep Dr before". She replied "oh, I'm confused then.  Can you hold"?  (rolling my eyes)  Finally, she got back on the phone and says "They want to you to follow up with a sleep Dr".  "Ok so when can I get her in for an appt"?  "I'll have to call you back, we don't have an appt set up for her". I asked "what is this appt in August that you were talking about".  "That was an appt that you cancelled and rescheduled for last week".  AHHHH!! I was ready to pull my hair out at the end of the conversation.

 

 

   What did I get from this conversation?  My child sleeps like crap, there is nothing that can be done at the moment besides to continue oxygen, and we need to add another specialist to our list of Dr's.  I have a list of questions to ask and no appt to ask them.  Hopefully, they will call me at the beginning of this week with an appt for sometime soon.  My child needs as much good sleep as she can get so she can have energy and a clear mind to work on all these new things that we want her to do.  Oh, and I forgot to ask if we could get an apnea monitor. AHHH! There goes more of my hair.

Another Sleep study

Yep, here we are again.  Sleep study #4. 

   This past Tuesday Sadie saw the pulmonologist. I told her about these "episodes" and about everything that we have done so far.  I told her about the EEG results and how the neurologist suggested that Sadie see her again in regards to the apnea.  She agreed that it could definitely be a sleeping issue, so she ordered an "urgent" sleep study.  She was not thrilled that we had not gone to the ER for these episodes and told me if there is a next time I really need to take her to the ER no matter what.  I explained why I didn't take her, she understood, but... still really wants me to take her next time.  Hopefully, there will not be a next time.

   So two days later, here I am sitting in the hospital, watching the monitors.  I really hate watching monitors!  But how do I not watch them?  They are right there, blinking there lights at me saying "hey, look at me".  Stupid monitors.  All they make me do is stress and realize how bad her apnea really is.  I think I have decided though, after sitting her for half the night watching these stupid monitors and listening to her breathing (or shall I say lack of breathing) I am going to ask for an apnea monitor.  My biggest fear is that one of these times she will not arouse to take another breath.  The thought just makes me sick to my stomach. Honestly, not sure why we don't have one already.  So if nothing else comes from this test, at least the realization that she needs a monitor did.

  See that 5? That is how many times a minute she is breathing.  That's not right. A child between 3-6 yrs old should breath between 22 and 34 bpm. Sadie generally stays around 9, but tonight she continually keeps dropping to 5.  *sigh*

 

EEG results

  Well today we went to the neurologist to get the EEG results.  The good news is that they are NOT seizures that she is having.  WooHoo!! I couldn't be happier about that.  However, that leads us back to the original question, what are these episodes!?
   After the neurologist gave me the news that they are not seizures that she is having, he continues on to tell me that what the EEG showed was slow brain waves (which is expected with her brain abnormalities).  Her very first EEG showed this also, so that was no surprise to me.  He then continued on to say that it also showed that she was not sleeping.  Her central apnea is so severe that she keeps waking up to take a breath.  She is never going into that deep REM sleep.  So he is guessing that these episodes that she is having are just from extreme exhaustion.  His suggestion?  Go see her pulmonologist and tell them the results of the EEG and see what they have to say.  So guess what my next phone call is going to be and probably our next appt? Yep, the pulmonologist.  Pretty sure I feel like I am chasing my tail, but come hell or high water, I will figure out these episodes!  She is worth the chase.

24 hr EEG

  Last night we had our 24 hr EEG.  Of course she had no episodes. That would make this diagnosis way too easy and NOTHING is easy when it comes to Sadie.  I think we can all agree on that at this point in her life.  But that is what is making life interesting and keeping me on my toes.  Must love her!
   Keeping her entertained was not exactly the easiest.  I had to bring all of her lights and fish aquarium (not her real one, haha), and fans, and ipad, and spinney wheel thing.  I'm pretty sure that the EEG techs thought we were moving in.  But what was I supposed to do?  It's not like she was going to lay there and watch movies all day.
  It all worked out fine.  Hopefully they will call me soon and give me some results.  Not sure if I really want them to say that "yes,she is having seizures", but at the same time at least that would give us answers as to what these episodes are that she is having.
   Only time will tell.

The appointments begin

  These episodes! What are they? What is causing them?  After her first episode and these small, multi episodes of extreme sleepiness we just so happened to have an appointment with the endocrinologist.  Perfect timing.  We only see her once a year to check all of Sadie's hormones.  With all the midline brain abnormalities that she has, they want to continue to check her hormones yearly because the midline contains many glands that could be effected and cause her issues.  Thus far, all her hormones are at the correct level.
  With all this sleepiness, maybe her thyroid level is screwed up? At her appt the Dr and I discussed these episodes and she said yes, maybe it's hormones.  She checked Sadie out and everything checked out good.  She then ordered some labs.  After the appt we had the blood drawn.  I expected a fight and a multi poke event.  However, Sadie cooperated perfectly and they got her on the first poke.  Hallelujah!
  A few days later we got the call saying that all her hormones are at the correct level and whatever these episodes are they have nothing to do with hormones.  Perfect, good news!  But now what? Where do I go next?  The endocrinologist suggested going to the neurologist.
  A few days later Chloe happened to have a Dr's appt for her 7 yr check up and so after Chloe was checked out, I brought up all these episodes that have been going on with little Miss Sadie.  She said they sounded like seizures and suggested we see the neurologist also. 
  The next day I called and left a msg for her neurologist telling him about these episodes and to see if we could move up her Dr's appt.  He called back and said that he wanted her to have an EEG to check for seizures.  I said I agree but I think that whatever is happening is happening in her sleep so I wanted to get an EEG in her sleep.  He agreed and we decided to do a 24hr EEG.  We shall see what that brings.

Did she really just say that?

   Saturday morning my husband and I are laying in bed hoping to fall back to sleep cause it's our one and only day to sleep in when we here "mom, dad, Sadie's awake" threw the baby monitor.  Aubrie's sweet little voice coming threw the speaker.  I giggled, my husband covered his head with the pillow and groaned.
"Mom, Sadie is awake and needs to be changed", pause
"hello? do you hear me"? pause
"Sadie mom will here soon. I'll read you a book until she comes" She then precedes to read her a story.
She then says to Sadie "I'll call mom again"
"MOM! I know you are listening to me, come change Sadie, her diaper is wet".
Aubrie then proceeds to play and talk with Sadie for about 5 more minutes or so and then I hear
"Mom and Dad, Sadie needs to be changed.  I am advocating for her.  Get up and come change her".
My husband and I just looked at each other and laughed. My husband then says to me "where in the world did she learn that. I said "apparently, she listens closer to me then I think".
  Reluctantly I climb out of bed and make my way upstairs.  Aubrie says "it's about time, mom". I said "yeah, yeah, yeah. Where did you learn the word advocate"?
"I don't know."
"Do you know what it means"?
"Yes"
"What"?
"It means being Sadie's voice and telling people what to do".
I just laughed.
  She's close, but I think I better explain it a little better.  But seriously, what 5 yr old talks about advocating for her little sister?  That is why I think that God knew what he was doing when he gave Sadie two of the best sisters ever.