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.

All about Anna

Turning the attention of this blog away from yours truly (as I continue "doing" daily life as it flies by, enjoying the joy in the journey along the way...), I was struck while out running yesterday with some of the awesome things about my beautiful Anna that I wanted to share with all of you.

First of all, she is the "middle child."  It is an obvious fact, a title that she acquired when we brought Lilly home some 2 1/2 years ago, but something that we don't often think about. It was brought up yesterday by her pediatric ENT doctor as he asked her about her siblings, and he commiserated with her (and I chimed in, too, as a middle child) as a fellow middle child.  It felt like the three of us were in a special "club" for those with an older and a younger sibling.  The term holds a certain connotation--for good reason.  In Anna's case, it is manifested in her being either considered "Jared's little sister" or "Lilly's big sister," and, truth be told, most of the time it is the latter. 

But Anna, on her own merits, is worth her own title.  Simply "Anna." 

Allow me to tell you some of the ways Anna has impressed me of late.

• She has managed a difficult school transition with very little fanfare.  With our most recent move, Jared has paved the way to High School, which has earned him a sense of accomplishment and a new level independence. Lilly has embarked on a new journey called kindergarten and kindergarteners naturally just steal the show.  But Anna's move here brought her from a school district where she had already completed the last year of elementary school (5th grade) to a new school district where her grade level is, once again, in elementary school (6th grade).  No excitement of graduating to a new level of education for my Anna this year.  Instead, she is top of the school, coming in on the last year of elementary school with lots of kids that have been together since kindergarten.  Not an easy transition.  Anna is quite social, but her interests are often different than other girls her age so true friendships don't always come easily for her.  She seems, however, to be doing really well and has a couple of new friends that she seems excited about. 

• She is learning to be others' focused.  This is something that it takes many of us years and years to learn.  Anna, however, made some big leaps in this area when we brought LIlly home from China, and continues to shine in this regard.  Most 6th graders don't have to worry about their kindergarten-aged siblings too much.  Anna, however, willingly continues to sit with the kindergarteners in the front of the school bus and help Lilly with her backpack almost every day, simply because she knows that Lilly needs and wants her help.  She did confide to me that sometimes she longs to sit in the back of the bus with the older kids, and I gave her the green light to do so, knowing that Lilly can and will adapt to not having her big sister by her side, but Anna continues on her own initiative to provide Lilly that extra measure of security during their rides to and from school.

• She is pressing on in her swimming, despite feeling like she doesn't quite fit in.  As I mentioned above, forming good friendships is not always easy for Anna, and this pre-teen stage makes it even more difficult, it seems.  With the swim team here, she has lamented more than once that she feels like none of the kids are interested in talking to her and they give her weird looks when she attempts to strike up conversation with them.  The one swimmer that she knows the best (they are in the same class at school and we carpool) approaches swimming and most things in general differently than Anna does, and so a close friendship is not looking likely.  Still, she does not complain when it's time to go to practice or a meet, and she truly sees the benefit in physical activity and wants to improve.
  
  
  
  
  
• She is learning to be more teachable and moldable.  This, again, is something that can take years to develop.  Anna will readily admit that it has been an area of struggle in her life.  By God's grace, however, we are seeing some progress in this area, and Anna understands the need for this trait.  She is learning to spend time quietly with God, looking to Him for her worth and her beauty.
• She is dealing with her hearing loss with grace and patience.  The issue first manifested itself to us back in February, just days before we headed to Philadelphia for Lilly's BIG surgery, just weeks before Nana got pneumonia and almost died, just a few months before Lilly's post op infection, and a few months before our big move.  All of these things caused some major delays in dealing with Anna's hearing loss.  We finally got started on having her hearing loss evaluated in Florida this summer, while LIlly was hospitalized with her infection.  The process takes time, and we are now, finally, getting close to having a hearing aid for her.  She has undergone at least 4 separate hearing tests and has been to at least 8 separate appointments so far as we're determining how best to treat it.  We have several more appointments to go, possibly some genetic testing.  Although she is eager to have her hearing aid and be able to hear, she is compensating for her unilateral hearing without much fanfare.
• She has been dealing with lengthy parental absences, showing growth in maturity.  Because of Lilly's many medical trips, Anna (and Jared) have been left with grandparents and/or friends on numerous occasions, sometimes for just a day or two, sometimes for a week or more at a time.  For Jared, who is older, this hasn't been too much of an issue.  For Anna, however, it is a difficult trial.  She doesn't like to have us away from home, she doesn't like the feeling that things are happening with her sister that she is not fully aware of or informed about.  She is learning to express her need for our communication while we're away and she is learning to be more self-reliant in a host of ways.

Anna with Nana...

Walking to the bus stop with Grammy just before
we left with Lilly for CHOP

• She grows more beautiful by the day, inside and out.  Yes, she's growing up on me.  It is hard to buy clothes for her, as she is sort of in between girls sizes and junior's sizes, but when shopping for an outfit for her to wear to her cousin, Tanya's wedding,  I realized how physically grown up looking she is getting.  And, because of her character development, her outer beauty is matched by her more important inner beauty.  She is not afraid to stand for what she believes in, and she has her own definite sense of style.  She is not afraid to stand out from the crowd, something that will serve her well as the teen years come hurtling our way.

I will leave it at that.  I am thankful I get to be Anna's mom, and am eager to see the plans God has for this strong, spunky, independent, verbal, thoughtful young woman.

And for your viewing pleasure, here are some pics of Anna (and various other folks!) taken recently--most of them at our niece Tanya's October 22 beautiful beach wedding in New Jersey.  (The rest of those photos are on facebook...what a wonderful day!)

Our family.  Anna is a little bit of a "mini-me"...or so I've been told.

Having fun with Tom on the dance floor.

Sharing her daddy for the father-daughter dance.

Taking time to dance with Lilly (though she confided to me

later that she "prefers to dance alone" which she did for most of the reception.)

Keeping it Real: On My Way Back from the Valley...I Pray

Even though I have been posting here fairly regularly to keep friends and family up to date on our lives, our move, Lilly's health, and our upcoming adoption, truth be told I haven't really felt quite like myself for awhile.  This blog is not really about me, Amy, as much as it is about our family life--the momentous, the miraculous, and the mundane.  But since I'm the author, the tone of what appears here is determined by me.

And, you see, I haven't felt much like "me" lately.  Now, every time we move, there is this period of time during which life just seems not quite *right*. During this time, I feel like I am in an altered world where I carry on with the activities of daily life, but I am not quite myself, my emotions can really oscillate, and I generally feel sad and alone.   The length of time can range from just a few weeks to a few months...and even when it seems like I am hitting my stride for the first time post-move, there can still be days that throw me back off of my feet even up until a year later. 

Don't misunderstand me; moving can be very fun and exciting.  I honestly love the Air Force lifestyle and look at every move as an adventure and a chance to meet people I otherwise might never have met, see places I might otherwise never have seen, and allow God to teach me new things and use me in new ways.  I have loved every single place we have lived.  I have dear friends that still live in each of those places and feel extremely blessed to have other friends around the globe with whom I have stayed in touch through many military moves. 

But the "alone-ness" of moving can wear me down.  Moving always forces me to re-evaluate myself, my priorities, my involvement in various activities, my schedule.  As we look for a new church home, it forces us to truly discern what the most important aspects of church life and doctrine are to us.  As we choose extracurricular activities for the kids, it forces us to balance our time, our energy, our finances, their preferences, their gifts.  All of this, by definition, takes place in the midst of feeling disconnected and isolated. 

This particular move was the culmination of many months of intense activity, excitement, and change for all of us.  If you have been following my blog, you know that 2011 has truly been an intense year for us.  Many, many momentous things for us this year, some fun and exciting, some hard and unwelcome: 

• February: major surgery for Lilly at CHOP
• February/March: Decision to adopt again (yay!)
• April: Boston Marathon for Amy (yay!)
• May: another surgery for Lilly
• June: Lilly's surprise infection and hospitalization
• June: Discovery of hearing loss in Anna
• July: THE MOVE
• July/August: recurrent infection for Lilly
• September: beginning of a new school year, high school for Jared, 6th grade for Anna, kindergarten for Lilly.
• September: another surgery and hospitalization for Lilly at CHOP

All of the emotion leading up to this move seemed more intense than usual.  It is never easy to say goodbye to the friends we have made.  God has graciously given us amazing friends every place we have lived.  The friends to whom we were saying goodbye in Florida, however, were friends who had supported and loved us through our adoption of Lilly, through her big surgery in February, and through her hospitalizations this summer.  Saying goodbye was hard. 

The milestones of this new school year also have made this move more intense:  Jared beginning high school (weren't we just yesterday doing MOMS club play dates at the park??) and Lilly starting kindergarten have made for an emotionally intense sandwich for me.

Tom's new position in this place--and the ambiguities of his role and responsibilties, without the joys for him of seeing patients yet--has also been a big adjustment for him--and hence for us.

Finally, my regular regimen of intense athletic training, which has often been the mainstay of my mental health, has been disrupted in this place--during the summer by the lack of any kind of routine or rhythm, and--now that school has started--by Jared's early morning schedule for high school.  In this place I am no longer teaching fitness classes; spinning in my basement without anyone there expecting a great workout or looking for motivation just isn't as much fun and it takes a lot more self-discpline.  I have no races on my calendar to give me that extra motivation to overcome grogginess for that 4am long run in the darkness.

And, so, I have felt a little "off."

But now, the good news.  I am on my way back. Back to myself, in a whole new way.

Yes, indeed.  I believe I have come through the valley, and am re-discovering joy amidst our new routines, our new relationships, and our new roles in this new place.

• I am re-learning to rest in the Lord and lean hard on Him for my purpose (to bring him glory and to enjoy Him) each day.  I am re-prioritizing my early morning quiet time, which is a glorious chance to soak up God's word and put my day ahead into perspective with prayer.
• I am realizing that it is "ok" to not be female athlete of the year for awhile (even though I am milling around a few possibilities for marathons and triathlons for next year).  As long as I'm being honest and transparent, I'll say it.  It is even ok to be a couple of pounds heavier than I prefer, and I don't need to beat myself up over it.
• I am learning new habits and organizational strategies to make my days purposeful and productive--which always feels better than sitting around on facebook.
• We have found a new church home--and not only is it a place where the truth is preached and solid teaching is available for each of us, but God has seen fit to allow us to be a part of a congregation with an embedded Chinese congregation.  How cool for Lilly (and Isabel, soon!) and the rest of us! 

Even though I know there will still be ups and downs, I feel fresh and renewed for what lies ahead.  Surely, there is only more excitement and challenge to come.
 

Chilling at the Philadelphia Ronald McDonald House...Home Soon!

After a long day of pretty much just sitting around and waiting for final lab results, prescriptions, and discharge orders yesterday, we were finally on our way our of the parking garage at CHOP around 6pm last night. Dr. Campbell came by late in the afternoon (he is SUCH a nice man!!) and felt that she should spend one night locally before we headed home just to make sure she was doing well. ALl of her blood work looked improved and the cultures from her tissue samples were still showing non growth of anything bad. He said "you have your work cut out for you..." meaning in the realm of her very low body weight. He wants us to work really hard on increasing her caloric intake so that she can "put some meat on her bones" before he attempts to re-insert the portion of the device that he removed. He is thinking that, as long as she has gained significant weight, he would like to try again in about 3 months to reinsert it.

Of course, my first thought was "Hmmmmmm, I wonder if that will be before or after we get Isabel, or will it be smack in the same time frame as when we'll be traveling??" Life is indeed complicated and full, but somehow I can rest knowing that in the Lord, all things are possible.

So we spent last night chilling at the Ronald McDonald House (I never cease to be amazed by what an awesome place this is!) and Lord willing today we will be on the road toward home, collecting Anna from my brother's house near Baltimore, and re-joining Jared who had a long day of band competitions yesterday and didn't even get home until 11:30pm last night. He may still be sleeping when new arrive.

As we return home, I am praying for wisdom to know when LIlly is physically ready to go back to school (regardless of how she feels about returning to school) and praying that we can now settle back into fall routines and avoid any imminent hospitalizations. (though we hope to get our referral soon for Anna to see an ENT who can implant her BAHA hearing aid).

Anyway, I cannot wait to be reunited with my big kids! Homeward bound!

Praise the Lord!