Next Steps.

Praise the Lord, the school week has had a great start.  Lilly re-entered the classroom scene with a little bit of anxiety yesterday, but is right back in the swing of things (including today's "friendship feast" between little kindergarten pilgrims and indians).  After a good weekend of swim meets, Anna has been doing well with occasional doses of anti-nausea medication.  For both girls, we are looking ahead and more specific steps.

After discussions with Dr. Campbell today, Lilly is scheduled for another surgery to address her infection on 27 December.  As the antibiotic has done its work over the past few days, we have noticed a small collection of fluid under one of her scars corresponding to the remaining upper part of her left VEPTR device: a little clue.  Dr. C had removed the lower portion of that same device in September, suspicious that the bacteria were there.  Now we are pretty certain the remaining bacteria are harbored on that upper portion that is still in place.  We are thankful to have seen that little clue a few days ago--we e-mailed a photo of it to Dr. C--and are hopeful this may be, Lord willing, the last surgery to address her infection before we get back on track with regular expansion surgeries. 

After discussions with Anna's ENT today, we are increasingly considering the possibility that Anna has Ménière's Disease, an inner ear disorder that affects hearing and balance.  We will also undergo some genetic testing that could point to other causes of her hearing loss.  The ENT is recommending a low sodium diet to attempt to alleviate the symptoms of dizziness and nausea that she has suffered recently, which could be caused by fluid imbalances in her inner ear.  Tomorrow Anna goes back to receive her hearing aid, and is very excited about the prospect of having bilateral hearing again. Stay tuned for photos.

So now I get to design family meals that will a) be high in calories and enable Lilly to gain weight rapidly and b) be low in sodium for Anna's sake.  I think we'll start after Thanksgiving!

We have much for which to be thankful. 

Health Updates on my Girls...Fitting Together Puzzle Pieces

Last week was quite a week. 

I was blessed to be able to attend a women's retreat with ladies from our new church home--Chantilly Bible Church--and it was wonderful to get away, get to know some new friends, enjoy crisp fall weather, and hear some teaching from the Word. 

Everything was great...until the text message I received from Tom on Sunday morning, in response to my text to him asking "Are you guys getting ready to go to church?"

His reply: "No.  Lilly had fevers last night. We're staying home."

Gulp.  My heart sank.  Backing up a few days:  Lilly had finished her last round of antibiotics on Tuesday the 15th, just 5 days prior to the fevers beginning. 

"Please Lord, let it be viral.  Please Lord, let it not be the infection still lingering." 

We dosed her with tylenol and motrin round the clock to keep the increasingly higher fevers at bay.  Her pain levels began to increase in all the usual places to the point where we were back on oxycodone and valium to manage it. 

While I was home nursing Lilly, the school nurse called midday Monday to let me know Anna had come to her office feeling nauseous.  This news almost made me feel relieved, thinking that Lilly might also be fighting a viral stomach bug.  After all, she had wretched a litle bit Monday morning after taking some medicine.  Never before have I so wanted my child to show sings of the stomach flu.

So, Anna joined us at home that Monday with one of the bizarre "stomach bugs" that she tends to get now and then.  I say they are bizarre because they do not follow the normal pattern of a 24-hour bug.  Rather than feeling absolutely miserable for 24 hours, having no appetite, and basically keeping nothing down, she feels ill once every 6-8 hours or so, but has an appetite in between and seems pretty normal otherwise.  It's just that pesky throwing up every now and then that means she can't go to school. 

So, as Lilly continued to fever and suffer from pain (with no signs of any other illness...no nausea, no upper respiratory syptoms, no issues with digestion or urination), Anna was home with us for the next 2 days of school.  By Thursday, I thought she was ready to try again and sent her to school.  That was the same day Tom had made arrangements for Lilly to get in for some lab work and chest x-rays to figure out what was going on with her.  So, while I was at Ft. Belvoir's hospital with Lilly, I got another call from Anna's school nurse to let me know she was back in her office, complaining again of nausea.  Tom had to leave work early to go pick up Anna.  Meanwhile, Lilly and I picked up our new prescription of oral antibiotics, the blood work showing that her white counts and other markers for bacterial infection were highly elevated.

Back home again with both my girls on Thursday afternoon, I started connecting some dots with Anna's mystery illnesses.

The last time she suffered from this illness was back in February when Nana was staying with Jared and Anna while Lilly, Tom and I were in Philly for Lilly's initial VEPTR placement surgery.  This was when Anna had also first begun to complain that she had weird "static" and "morse code" noises in her left ear and had trouble hearing out of it.  At the time, I had written off the weird ear issues as just part of whatever her weird viral stomach issues had been and thought it would pass.  The stomach issues did, the tinnitis in the ear did not.

So, as you know if you have been keeping up with us, we have traveled a long road of evaluating Anna's hearing which will culminate in getting her first hearing aid this week (she is SO excited, BTW).  There hasn't been any other episodes of the "bizarre stomach bug" until now.  But there have been recent episodes of dizziness/vertigo, which also required her to come home from school. 

By now, you are probably all wondering why it has taken me so long to connect the dots....

I believe that Anna's bizarre stomach bugs are not at all infectious.  I now believe they are simply another aspect to her inner ear issues, triggering the nausea center of her brain.  Researching unilateral hearing loss in children, I have discovered that often times other symptoms can include dizziness and nausea.  We tried giving her some dramamine at night Thursday night and some Robine Friday morning before school (both anti-emitics that help with motion sickness), and she felt great.  Confirmation.

I hope to discuss this theory with her ENT when we see him this week. 

Lilly, meanwhile, has been on her antibiotics again now for 3 days and has been fever free for over 36 hours now.  Again, confirmation that the infection is still here.  She is still having some pain, especially at night, but hopefully that will also soon subside.

So, both Anna's and Lilly's puzzles are getting pieced together.  I am thankful for answers, even though, in Lilly's case, it raises more difficult questions. 

What to do next?

We hope to consult with Dr. Campbell this week to get his take and discuss some possible solutions to the lingering staphoreous infection.  I won't even begin to discuss what my mama's brain starts to list as possible treatment options...I only pretend to have medical knowledge because I'm married to a doc.  But I have enough knowledge only to be dangerous and/or cause myself worry.  So I won't go there with you.

This morning, I am hopeful that both of my girls will be back to school (Lilly, of course, having missed the entire week last week, is nervous about re-entry) and our lives will have some semblance of routine again, at least for a few days until Thanksgiving break. 

Thanks for sticking with me on this long post.  It was probably written more for me that for you...it helps me to process our crazy lives when I write it all out!

Moving Forward

Just a quick update to let you all know that we have, finally, received our Virginia child abuse clearances.  Our homestudy update has been finalized, reviewed by CCAI, and our supplement 3 paperwork is on its way to the USCIS lockbox as I type.  A few days from now, CCAI will file our I800 paperwork to USCIS so that our I800 approval process can run parallel to the supplement 3 processing (as I understand it). 

Our best guess is that we'll be traveling sometime around February of next year.  Not soon enough!  Especially after receiving this new photo of Isabel taken by a family who just returned home with their little boy, who was also at Luoyang Children's Welfare Institute.

I just want to hug this little girl and kiss those cute cheeks!  Lilly says she looks like she needs lots of hugs.  I am thankful for the holidays around the corner which are always a huge time warp and will be a divine distraction from the wait.

On a separate note, we are *hoping* we are moving forward on the post op infection front with Lilly....but as she is currently under the weather with fevers and some pain (having just finished her last round of antibiotics last week--5 months after this all started), we are praying that the infection is not recurring.  Because Anna has also come home from school today with nausea and sore throat, we are hopeful Lilly is simply fighting a virus...please pray with us that this is the case.

LOA! LOA! LOA!

Just a very quick post to announce that we received our LOA on Tuesday.  It is the final approval from China to adopt Isabel, basically seeking our confirmation that "why, yes we do want to adopt this sweet little girl!"  After a flurry of paperwork, it is signed and on its way back to CCAI to be forwarded on to China.  This is wonderful news, and a huge step forward in the process. 

Unfortunately for us, however, we cannot move on to the next step until our homestudy update is finalized.  And it cannot be finalized until our Virginia child abuse clearances come through; the current backlog means that they will still be a few more days in coming, even though it's been over 3 weeks since we submitted them.

Once it is finalized, we can submit it along with our supplement 3 filing to the US Citizenship and Immigration Service (USCIS).

And THEN, we can proceed with the next big step, which is to submit our I-800 paperwork to USCIS for our final immigration approval to bring Isabel home.

Once the I-800 paperwork is submitted, we are looking at travel in the following 11-15 weeks or so   (after we receive our Travel Approval (TA) and Consulate Appointment (CA) date.)

Soooo...all that to simply say: it's looking like we could travel sometime around late January or early February 2012. 

Thank God we have the holidays just around the corner to divert our minds from the wait.  If only she could have been here to share them with us this year.  But we trust that the timing is in God's hands, and we pray that she is receiving nurture and love and care while she waits.