Tuesday, October 7, 2014

The days are racing by...

I can't believe it has been over two months from my last update!  Time is just racing by...

Where to even start?

Serenity....I think this girl is giving the medical community gray hairs!  After the stay in the hospital, the bad oxygen rates, etc., it was decided that a sleep study had to be done to help prioritize what needed to be done first on her huge list of medical to-dos.  Wow...the results were pretty conclusive.  She stops breathing 94 times per hour.  I cannot even wrap my head around this.  I know how hard she struggles to breathe all night long, but WOW!

This led to the trach being now the only thing left on the table of options....but then that set off a whole new struggle to determine what and when.   Then, as all of that was being discussed in the medical "round table" of experts, we went to the optomologist.  I need to stop thinking that anything will be simple and easy with my little pixy-girl.  They found that the pressure of the skull on the brain is causing a massive amount of pressure on her optic nerves - which will lead to blindness if left untreated.   Oh, and she has horrific vision on top of that!

That result caused the situation to go from serious to critical.  But it still was a can of worms as to what to work on.  It turns out that if a child has been oxygen deprived, as Serenity has at night, when they "fix" that (through the trach), it can cause the brain to swell....and she has no room for that to happen.  So, to make a long medical go-around short, it has been decided to do the trach AND the skull expansion at the same time.  WOW, again.

The surgery was put on the fast track and we were scheduled for October 1st.  I was still trying to grasp hold of the situation emotionally....but then Serenity got a really bad cough/cold/runny nose and that was the end of the Oct 1st date!  Now it has been rescheduled for Nov 7th - a much harder time of the year for us.  This is planned to be a 4-5 week stay in the hospital - so after Thanksgiving.  Ugh.  Handsome is in the retail world, so that is really tough timing.  But we always come back to God being Sovereign.  This is all within His perfect plan.  The plan may include stretching our faith and our family ~ but in the end there will be glory to His Name.

So emotionally, where am I with all of this?  That is probably more complicated than the doctors trying to come up with a good plan of treatment.  I want her to be healthy and free of the struggles to breathe and the pressure on her brain!  I want to see how her life will change - dramatically or not?  I want her to grow and thrive and enjoy life.  But a trach?  Ugh, that hurts the heart.  Something else to mark her as "different".  It will also most likely change or completely take away her precious little voice.  We were told that some kids learn to speak "around" the trach (with a trach, the air doesn't reach the vocal cords, so there is no sound) but it is a very different sound.  Some kids can learn to function with a speaking valve - one that only lets air in, and not out, so the air does have to move past the vocal chords.  But only some kids can handle this and it still changes their voice.  Serenity has the sweetest little "HI!"....well, not "little", she is VERY loud...but it is precious.  It is hard to think of that being gone.  Right now, the doctors are saying she will have the trach for at least 3-4 years, until they do the mid-face expansion several years from now.  I haven't thought as much about the skull expansion ...other than I am very happy the will not shave her head.  They will just shave a small strip that can be covered up the the other longer hair,  I am so thankful for that.

While all of the coordinating for the surgeries is going on, Serenity failed another hearing test.  Oh, my goodness!  The poor girl!  So among all the other things, she needs to be put to sleep and have a thorough hearing test done via brain probe.  This will tell them what type of hearing aid that she will need.  So many, many things!

But I am so grateful she is here! I am so thankful that the doctors can fix each thing one by one.  I praise God with an overflowing heart full of thanks.  What will life be like for her without the constant pressure on the brain?  When she can see with glasses and hear with hearing aids?  When she can breathe and sleep soundly?  She can do so much even with such huge limitations...my kids laugh that she will have super powers by the time they are done!

So please pray with me for Serenity.  Please pray for health before the surgery and for skill for the surgeons.  Pray for peace and comfort for her as there is really no way to explain any of this in a way she would understand.  Pray for Handsome and I as we try to balance all that needs to be done.  Pray I can learn to care for the trach quickly so she can come home faster.  Pray, pray, pray!

Hmmm...what about everyone else?  Those who are schooling are moving along in their studies.  My mom is keeping Smiley, The Prince, The Professor, Romeo, and Snip very busy.  The oldest, The Helper, The Warrior, and The Testy Chef are busy with online classes.  The Boss and I are working on preschool. 

Grace is recovering well from her hip surgery.  She had another round of Botox to release her tight muscles today - looking forward to some good months of stretching her muscles.  We are still praying that her scoliosis is holding steady and not getting worse.

Hope...my dear girl.  We had a really, really tough stretch where she completely reverted back to where she was at when we got her from the orphanage.  She stopped moving completely and was continually hitting her head with her fists and her toys.  It was really, really hard - and honestly, frustrating.  I don't know what brought it on.  Thankfully, we have now come out of it again after about 8 weeks or so.  She is scooting on her bottom again and interacting with toys.  She still has such a long way to go...but again, I am just thankful she is here.  That I can hold her close and dream big things for her.  I can praise God for her and pray He heals her in His perfect plan.

My time is gone again (as Mimi is trying to suck on the computer).  Before I go though, I want to introduce you to little Rudy:

This little pumpkin is in a large Asian country.  He is 3 years old and has Down Syndrome.  He has captured two of my kids' hearts.  Snip and The Professor pray for him and donate to his account through Reese's Rainbow.  In fact, the entire $53 in his account is all from the two of them.  I am not sure what about him has drawn them - so I am assuming it is the Lord touching them for some reason that I cannot see yet.

Every year, Reese's Rainbow does an "Angel Tree" - encouraging people to donate to the accounts of little ones with Down Syndrome.  The money in the accounts are given to the families that choose to adopt them.  An average adoption costs $26K - $30K - this is a lot of money for just about anyone.  Because my kids love little "Rudy" so much, we have signed up to be his Angel Tree Warriors.  We will work to raise $1000 in donations between November 1st and Dec 31st.  But more than money, I want to encourage people to pray for him.  Pray that a family sees him and falls in love - that they are willing to do whatever necessary to redeem this little boy - to give him a hope, a future, and a family.  Pray big things for this precious little man....

Until He comes ~ we will praise Him.