Great news and not so great news

As some of you heard earlier today, we had successful MRI.  The fluid pooling in her spine is completely gone, and her back and brain look great.  The pressure is off her her neck area, and the rest of her back is "normal," for her anyway.  Dr. Swift was very pleased.  He did mention wanting an X-ray on her spine soon just to check out the curvature.  She's curving to her left more and more as she grows so he just wants a better look at that.

So the not so great news...the sleep study results.  I thought for sure they would be inconclusive as Zoe had a semi-sleepless night during the study, but they did find that Zoe has obstructive sleep apnea.  From what I am learning, there are two types of sleep apnea, central and obstructive.  Central sleep apnea is a condition in which your brain stops sending signals to the muscles that control breathing, causing you to actually stop breathing temporarily.  Obstructive sleep apnea is a condition in which the airflow pauses or decreases during breathing while you are asleep because the airway has become narrow, blocked, or floppy.

If you didn't already know, Zoe is quite the snorer.  We have to turn the monitor down to the softest volume at night and turn it away from our bed because we hear her so loudly...I'm sure she would love that I'm sharing this with the WORLD right now :)  Common problems are sleepiness and low energy during the day, unrestful nights (waking up groggy), and Dr. Swift suggests her low oxygen levels during the night may be an indication of her heart working overtime.  There are several reasons why anyone might have this type of sleep apnea, but he suspects that she either has really large tonsils (that's an easy fix, right?!) or perhaps she has a very weak or floppy throat.  There's also a procedure for that.  He's instructed us to see an ENT to get that fixed.

We have known about her throat for awhile now and how desensitized it has become.  The surgeries have helped, but not completely corrected the lack of feeling in her throat.  Throughout her feeding therapy sessions, she has become a safer eater, but her issues are not completely resolved.  Obviously, we know she's two and she's gonna be grumpy and irritated and irrational a lot of the time, but I would like to think that some of her "emotions" and "firey" attitude could be contributed to not sleeping well.  Ever.  Of course I'm sure Jay would disagree and say she's just my daughter.....hahaha

Anyway, let us know if you have any amazing or not so amazing ENTs you would recommend or not recommend :)  We have zero experience with that.

Sorry if this was TMI...

Grateful

I just wanted to brag for a moment on my sweet husband, Jay. I am so grateful for him in my life. The same guy that "forgot" to get my number the day we met was the same guy that proposed just a short 8 months later. He's the same guy who never went to a choir concert in his life until me. (Since then, he's been to more rehearsals, musicals, concerts, and musical venues than he ever anticipated.) He's the same guy who rode on many a school bus...be it a field trip to CiCi's pizza or whatever concert we were headed to.  He's the same person that has always stood up to me and other people when something is not right. He's the same guy that made me buy 3 pregnancy tests and take them ALL the day we found out I was pregnant with Zoe. He's the same man who laid there right beside me and wept with me when we received the disturbing news of Zoe's diagnosis.  The same guy who promised me "you're stuck with me" when we were told the divorce rate of special needs parents was 80%.  The same person who has literally stuck with me through the ups and downs, the highs and lows, and the good and the bad. And he has loved me unconditionally throughout my crazy career transformations. He's the same guy who makes the effort to get home early enough for dinner time with Zoe so that she can eat dinner with her whole family...just to turn around and go back to work after her bath.  Again, I just wanted to brag on him and give thanks FOR him. I couldn't have gone through the last 6 years without him.

We are also grateful for you. All of you who pray for us, love on our sweet Zoe, and help out when we need a break.

We need your thoughts and prayers...Zoe is undergoing an MRI early Monday morning.  Standard follow up procedure from her laminectomy back in September.  Unfortunately (but actually fortunately), we've always discovered the need for another surgery when we have an MRI.  We are hoping for a good (aka boring) report Monday. Love you all and have a fantastic Sunday!