Monday, February 29, 2016

Well, that didn't go as planned!

You know the phrase about "best laid plans"....hmmmm.  Well, Saturday night Serenity ended up heading to the hospital via ambulance.  She had a constant/continuous cough and her heart rate was going crazy on the monitor.  At first it looked like she would come home on Sunday, but now it has hit that yucky "indefinite" stage.  She is on oxygen and even with that, she is only stating in the low 90s.  They have determined it is the HMV virus (which is very much like RSV) but that is a tough thing for a kiddo on a trach.  She will not head home until her stats are in the mid 90s without oxygen.  She does not feel "sick" - so this is a bit of a challenge for Handsome in keeping her busy.  They cannot walk the hospital halls as they normally do because she is contagious. :(

This also meant that the big "round table" appointments were cancelled today.  I had a grown up temper tantrum over this until I reminded myself of God's unending faithfulness to us.....He has a reason.  I will trust it. 

Will keep you posted - please keep Serenity in your prayers.

Saturday, February 27, 2016

The next prayer requests...

Yesterday was amazing!  Serenity's reactions to the hearing aids were so precious.  We had timed "sprints" in them yesterday as it is very overwhelming for her to hear EVERYTHING at once.  Even the printer printing was a new sound for her. 

We realized after talking with the wonderful audiologist that we should have been color coding the pieces of equipment as it is a pretty sure thing that Jillian will need hearing aids and glasses - and also a big possibility that Lucy and Peter could have glasses/hearing aids as well.  Each kiddo is assigned a color - but we chose pink hearing aids for Serenity when her color is actually purple.  Not an earth-shattering mistake, but one I wish I could go back and redo.  Her ear molds will have to be remade as she grows, so we will switch then, but in the meantime we also ordered new glasses in pink as well - might as well run with it. (NOTE to parents with kiddos with Apert or DS, Miraflex now makes a pair of glasses with a built up nose bridge to stay on those little tiny noses...especially kiddos from China with tiny noses. :)  It is only in one frame style, more rectangular than oval, which is not my favorite, but hoping they will expand in the future.)

So the next prayer request is for this next Monday.  We have calling it the massive "round table" meeting day for Hope, Serenity, and Jillian.  Yes, I cringe at the thought of taking all three for an ALL day appointment - Jillian and Serenity in their exuberance and wiggly bodies and Hope with her overwhelmed freak outs.  Hmmm, fun....not.  But we have a number of questions on each kiddo. 

For Hope, we want to find out if there is a "window" of time in which her facial surgery would need to be done.  It sounds like the surgery could very well negatively affect her vision (not to mention taking a HUGE step back in her healing and adjusting to her life outside of the abuse/neglect of her orphanage).  So as parents, we have a tough decision - do the surgery to "fix" the face and possibly ruin her vision or leave the face and keep the vision.  Her face is absolutely beautiful to us - but it does draw some very negative reactions, especially from children.  Right now, she is pretty cocooned (and happy about it) at home.  But if she begins to go out more, I do think she is cognitively aware enough to realize that people are reacting to her.  In a perfect world, she would be loved and accepted just as she is - but that is not where we are at - so what is the best choice for our child?  A true "rock and a hard place" - so we want to get the input of the doctors about our options. 

For Serenity, I just need to verify that after her last pinky is released at the end of March that she will be surgery/procedure free for a few years.  I think she needs to have the time to focus on learning and growing cognitively - but surgeries always set us back a bit.  At the end of the 2-3 year time period, she will have her most complicated surgery yet - moving her mid-face forward.  When that is done, there is a real possibility that her trach can be removed - one step closer to just being a "plain-girl" (a term used by our then 4 year old to describe "typical" children).

For Jillian, I am desperate to get the surgery to release her thumbs on the calendar.  This girl is SO intelligent.  Not just mommy-pride here (especially since I have nothing to do with it!) - she is amazing.  The thumbs are so critical to the next steps in learning.  We also need to find out if a front-vault expansion is in the near future.   This surgery is important to protecting the eyes of kiddos with Aperts - but Jillian's forehead actually does a pretty good job of this already - so not sure what is in store.  I need to know for my mental "organization" and for my prayer list.

If you could pray for a relatively easy appointment (ha, ha) and for good interaction with the doctors, I would so appreciate it.  We are still praying that the virus skips Grace so she can have her surgery on March 7th....

Thank you all so much for all your love and support!

Friday, February 26, 2016

Update! Tears for this Mama

A little rough quality, but beautiful!

Prayer please...

Today, we FINALLY get Serenity's hearing aids.  I cannot tell you how much I have prayed for these to make a miraculous difference in her ability to learn, speak, and behavior.  Please pray that God would do this if it is His perfect plan - and if it is not, that I will rejoice, knowing He is a loving Father and has a perfect reason for that.  I also ask for prayers for wisdom for Handsome and I in knowing how to best teach her and help her grow.  I will update this post when I get home today...

Please also pray for Grace.  Her surgery for rods (for scoliosis) is in a little more than a week - but we have a nasty virus making the rounds here.  Please pray for protection for her so that we can go forward as planned.

We are still waiting for LOA/LSC for our Lucy and Peter - hopefully within the next two weeks.  It has been just over 6 months since Lucy went back to China.  I need my beautiful girl home in my arms.  I also need to be holding my new son - learning his joys and challenges. 

Thank you, my precious friends.

Until He comes - to Him be all honor, glory, and praise...

Thursday, February 11, 2016

Love the waiting...

No, actually I don't.  With every adoption and pregnancy, a point hits that I just don't think I can stand the wait anymore.  With pregnancies, it hits about 32 weeks - 2 months before baby comes!  With each adoption, it is a little different - but one thing that is sure to trigger it is the government offices in the other country being closed.....I am happy that the Chinese people enjoy their new year's celebrations and if I wasn't waiting for our LOA/LSC - I would find it awesome that everything closes down for two weeks and many people return to their hometowns to celebrate.  This year?  I am working at being happy for them, I really am. :)  But, oh, I want to know when I will hold my Lucy girl again.  I want to know when I will get some more information and updated pictures for Peter.  Tonight, the wait just seems too long....

Jillian is doing fabulous after her surgery.  She is one tough little kiddo.  Her skull looks beautifully shaped and expanded and other than having to be still while I work at keeping the incision clean, she is back to normal. didn't help with the crankiness...that seems to be a character flaw, not due to pain.  My other over-the-top smart kiddo is also a very cranky maybe crankiness and high intelligence are linked?  She is too smart for my own good, that is for sure.

We had to delay Grace's surgery to the first part of March due to a cold and fever.  Please be praying she is healthy for the next scheduled date - I really want this one over with.  She has a very difficult time in the hospital and having her routine changed.  How I love that beautiful girl!

As I said, we are waiting (not so) patiently for China's offices to reopen.  I am praying for a quick LOA/LSC after that.  We are still waiting and praying for God's provision for the last $9700 we need to finish this adoption.  We will see where we are at after filing income taxes.  I am praying for May travel - but it would take God moving on our behalf at this time.

Thank you to all who pray for us and check back regularly for our "updates" soon as I have a true update, I will post it. :)

Until He comes....