Saturday, May 28, 2016


Overall Mia had been doing really well with recovery.  We've had a few hiccups with her IV's.  Her veins are very tiny and fragile, so she keeps losing her IV's and it's very hard for the nurses to find a new vein.  Last night it took 7 tries to replace her IV and her left hand, where the IV failed, swelled up like a pufferfish.  It's still a little swollen today, hoping there is no damage to the tissue.  They ended up injecting her 5 times with a medicine called Wydase, which is supposed to counteract and protect the tissue as it returns to normal.

Today the goal is to start liquids and walk some more.  Hopefully also get off the extra nasal oxygen completely.  Some of the time she does good, but then sometimes her blood oxygen levels dip down, especially when she is super relaxed and sleeping.  But, she hates the nasal oxygen and is constantly taking it off, I ended up sleeping with her and holding her hands so she couldn't tear it off.

Grandma, Daddy and Asher started driving home yesterday (change of plans) and now Mia and I will fly home when we are done.  Hoping that is less stressful on her travel wise.

Thanks for praying!

Thursday, May 26, 2016


We arrived in Colorado on Sunday evening and have completed multiple days of pre-op appointments.  Yesterday they admitted her prior to surgery.  She is having an abdominal surgery and needed to be squeaky clean for it.  As a result, she has had a lot of miralax running through her.  It has made her tummy "sad", her words.  She did throw up once, but seems to be doing well this morning.

Prayers today for:  complication free surgery
                               Minimal to none abdominal adhesions
                               Easy pain management after
                               Uncomplicated recovery

Thank you for praying!  Will try to update more later.

Friday, May 20, 2016

Going Going Going

Mia, Asher, Grandma Cheri and I head out tomorrow to Colorado.  Mia is having a procedure done at the Children's Hospital there to make our toileting process much easier.  We had seen this doctor years ago in Cincinnati and he has since moved to Colorado and we are as a result going there.  He's an expert in the field, to say the least, and with Mia not always being a typical case, we wanted to go and see him.  So, it will be a two day trek to get there and then a week of doctor appointments and surgery and then a two day trek back. 

We, as always, would so appreciate your prayers.  For a safe trip and a complication free surgery. 

Mia's collar bone is doing well and she appears to be healing well.  By the grace of God, she hasn't had anymore falls, but she is still having seizures.  Continue to be praying for her protection, we are so grateful for all of those prayers. 

Will update you after the surgery (which is on Thursday) and let you know how it went. 

Sunday, May 08, 2016

Happy Mother's Day!

It's hard to believe that 8ish years ago, I became a mom.  That doesn't really seem possible to me, yet our little bean is 8 years old!  When you are in the daily moment, it is definitely not easy and can seem like forever, but when you take a step back and look at it, time goes so quickly.  So, I try to enjoy this time, try to remember that it is a journey and not a destination and realize there will be bumps in the road.  Some days that is easier than others, but I am grateful for my munchkins.  They are very unique and so special to me.  I'm so glad that God entrusted them to us. 

Last week, Mia had a seizure and fell down and broke her collar bone.  Sigh.  Big Sigh.  I was in the other room and she'll sometimes giggle loudly after a seizure, so I heard her giggling and knew she had just had one.  I went to check on her and she had fallen in the living room on the carpet, so I thought, ok, this should be ok.  Well, after she came to, I got her up to walk around a bit to make sure everything was ok and she immediately started complaining about her shoulder.  I was hoping it was just bruised, but after a doctor visit and x-ray, it was definitely broken.  She's wearing a figure 8 brace now and will be in it for at least 6 weeks.  I'm going to call an orthopedic doctor in Bakersfield on Monday, just to see about getting her in for him to look at her x-ray and make sure the figure 8 brace is all she needs.  She broke her right collar bone, which is her dominant hand because of the left-sided weakness, her OT encouraged us to get a second opinion just to make sure because she uses this arm/hand for everything. 

If you think about it, please be praying for her healing.  Now we are especially aware when she is up and about because the thought of her falling again and rebreaking it is overwhelming.  Praying for protection and healing for our sweet Mia. 
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