A Much Needed Update

Is it summer yet?  As of today, I can officially say it is.  June tends to be a bit more chaotic because for the last two years I have been co-director of crafts at our church's VBS.  It's a fun job, but can be exhausting too.  Thankfully my co-director is AWESOME and I couldn't do it without her.  But, it just seems like everything revolves around making that happen in June. 

The kids had a blast at VBS.  It was just a great week for them and I love how excited they were about going.  We've listened to the music CD of VBS songs on repeat for the last month, so I was rather surprised when it came on in the car today and everyone still got excited.  Asher said, "this is my favorite." 

The kids have been doing swim lessons every day and I'm excited to report that both Calvin and Asher can swim!  How crazy is that?  Their teacher has them jumping in or sliding in and then swimming to the side on their own.  Neither of them can swim the length of the pool, and Calvin can definitely swim further than Asher, but I'm so impressed with how much they have improved.  Mia is right there too and while she readily tries and works on all the skills, she just has a tougher time getting it all together than the boys.  But, I think with enough practice, she too will get it. 

Speaking of Mia, she continues to be seizure free!  Praise God!  We have started to wean her off one of her meds very slowly.  We are being cautious, but realize also that she's probably on a bit too much medication as she gets really sleepy during the afternoon.  She is also completely healed from her surgery and doing really well. 

We are looking forward to relaxing over the next few weeks as we enjoy our first days of summer!

Home!

We made it home late on Thursday evening.  It was so nice to be able to fly home and not drive especially since we ended up staying longer than I anticipated. 

Mia is doing really well.  It always amazes me how quickly kids bounce back after surgery. 

Before her surgery date, we had to meet with several specialties to get her cleared for surgery because of her complicated history.  One of those was neurology because of her ongoing seizures.  They recommended that we increase one of her meds just a little bit to bridge us through surgery since the body is prone to more seizures during a surgery and recovery.  So the Tuesday before surgery, we increased the one med just a tiny bit for her AM dose.  Up through her surgery, she was still having daily seizures.  The day after her surgery she had 3 seizures.  But then, amazingly, they stopped.  We haven't had a seizure since last week Saturday.  There have been a few times when she zones and I wonder if it is an absence seizure, but they are very brief and it could just be exhaustion and recovery from her surgery.  We are hopeful that in the next few weeks we can determine, as she gets rested, if she indeed is seizure free.  Right now, we are just so grateful.  Every day without a seizure is a blessing.  Thank you, thank you, thank you God!!!

Recovery

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!

Surgery

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.

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.