Count of Chicks for Children

God's Plan For Us

This is our journey - God's incredible plan for our lives. When we followed the moving of the Holy Spirit, He opened the windows of Heaven and poured out upon us blessings we never dreamed of! Indescribable joy!

" For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Tuesday, January 31, 2012

We're HOME!!!! PRAISE the LORD

We're home!!!!!! The trip home went so much better than expected. She rested the entire hour and didn't mention pain until one minute from the house. She did so well after getting home, she told me she didn't need her pain medicine when it was due. Incredibly, she even sat up and ate supper (and ate WELL!!!!). It's been a hectic, but wonderful day. I'll post more tomorrow, but for now I'm going to sit with the family and enjoy being together. Thanks for all the prayers!!! It is obvious that many prayers were prayed! It is truly a miracle we are here at home!!!!

Monday, January 30, 2012

Almost HOME!!!!!!

Doesn't that luggage in the background look fantastic!!!!!!This morning, one of the surgeons came in and I asked what had to happen before we could go home. Basically we had done them all, so tomorrow we will all be together again!!! They will send her home with the medicine she is now taking (so glad we had gotten off the pain pump already), and will order some home therapy with a PT/OT. She won't be allowed to take a real bath for 3 more weeks, simply because the brace needs to be on anytime she is sitting or standing. At this point her back is still too unstable to be without it even for a short time. She is a little apprehensive about coming home, because she believes we won't be able to control her pain, but after talking a lot about it, I think she's getting more excited. The drive home is another matter, and I will talk to the nurses in the morning about what we can give her that will make the hour drive as easy as possible. She hates the brace and having it on that length of time is going to be a challenge. The brace shop didn't come by today like they were supposed to (not very happy about that), so the nurses said they'll start calling first thing in the morning to get them moving. Xiaoyun's brace had several areas that are too tight and are rubbing, causing a lot of pain.
We did have a treat today - Andrea came back again and gave us both another massage. It really helped Xiaoyun's neck, as well as mine ;-) . So sweet of her to come again and do that.
Xiaoyun and I had a long night, so I'll post more later!

Sunday, January 29, 2012

Turned a corner

What a difference a day makes! Yesterday, there were tears, begging, and pleading not to get her up. Today she has been up 5 times and walked twice around the floor. Not that she is liking the brace (at all!!!!), but we've turned a corner, I think. We're down to the PICC line (used to give meds, but no longer for the fluids and pain pump), and the leg compression at night. We've lost a lot of hardware in the last couple of days, and are actually wearing clothes now! Morphine is on the list if needed, but so far since the pain pump removal, she's not used it. We'll talk to the surgeon tomorrow to see what needs to happen before we can go home (doesn't that sound WONDERFUL!!!!!!). The last few days she been very unhappy, which I'd be too, and has said she just wants to go back to how she used to be. This afternoon, however, she perked up, watched movies with me, Virgil, Elli, and Enya, and ate a lot of popcorn. It was like a switch went off and she started smiling again. Glad to see that light in her eyes again!
My mom and Emily (our oldest daughter) stayed last night at the hospital, and for the first time in almost 4 weeks,Virgil and I were home at the same time. The girls were happy to have us both home and we were too (except for feeling guilty for not being at the hospital). We can't wait for all of us to be together again!!!!


To K, who mentioned advocating for a girl who will be aging out in the fall, please send me the info :-)
To those who have just sent Xiaoyun  cards - thank you and we look forward to receiving them!!!!!

Thanks to all who are praying for Tre!!!!!!!

To our friend who has adopted from Hefei - we also have an Anhui beauty (Fuyang)

Saturday, January 28, 2012

Perspective

I'll start by saying that last night around 11pm they had a room become available, so we are now back out of PICU. So thankful to be back in a room, however, yesterday things were put into a little better perspective for me. In the bed beside Xiaoyun on PICU was a little 4 yr old boy. While I've been whining about being in the PICU for a few days, I found out he has been in PICU for over 2 MONTHS!!!! He needs a lung transplant and won't be able to go home until insurance approves the transplant, gets on the donor list, then flies to St. Louis to have the transplant done. I can't imagine how difficult this is for his parents. They also have 2 other little ones and live in the same town as us - an hour away. His mom said that at first they had a lot of support, but as time goes by, support dwindles. I asked her if I could post his name so you all could remember him in your prayers. His name is Tre (pronounced like Trey), and is hooked up to so many machines that is breaks your heart. It was a good reminder to me about how much so many are suffering and how much I have to be thankful for!!!!

Xiaoyun got the brace on and got up out of bed this afternoon! She also got the drain tube removed, as well as the Foley, and the bandages on her back. They took her off the pain pump, and though she still has the PICC in, it is not being used except when they need to give her medicine. She walked a few steps (not willingly) for the first time in a week and a half. Unfortunately, the brace didn't fit quite right and rubbed her neck, which made her think it was choking her. They went ahead and took it off and had the orthotics department come in and adjust it again. Thankfully, he happened to be just down the street and was able to come and adjust it quickly. Getting up made her nauseous and wore her out. Some Zophran (?) and a nap is where we are at this point. We are so much closer to going home now!!!!!

Friday, January 27, 2012

Thought it best to post now, because once I switch with Virgil and get home, I'm pretty sure I'm going to crash. They came in to check to make sure brace was a good fit, and Xiaoyun got very unhappy very quickly. He ended up not even trying the back part on, since he knew he needed adjustments on the front. One of Xiaoyun's doctors came in in the midst of all this, and changed her orders to give her another days rest before putting on brace and starting therapy. She was relieved and so was I! I must say, this is the worst mood she's been in since getting here that I can remember. She hasn't been friendly with anyone who's come through and hasn't wanted to talk or even let them do blood pressure. I think she's had enough and being in a noisier environment just makes it worse. I completely understand because even I, who's just fine, am weary and uncomfortable. So many surgeries in such a short time Please pray for strength for her and a restful night sleep for her and Virgil (who she keeps asking for over and over). He'll be here soon and that might cheer her up.

And We Wait

What  we hoped would happen last night now probably won't even happen today - there are no rooms, and I know there are at least 10 kids in the ER waiting for a room, so we're now hoping to have a room by tomorrow. The surgeon came in and looked at the incision area. It is dry as a bone, so all is well there. She still has a drain tube in and they want to leave that until tomorrow. The surgeon brought me the leftover instrumentation from her rods. I'll post a picture of these once we have the camera fixed (stopped working yesterday). The rods are smaller than I had thought they would be. I believe we will be having them made into some jewelry at some point after we get home. The side incision site from last week is looking great. I can't believe how well her little body is healing after each incision! Later today, after she gets her brace, physical therapy and occupational therapy will come and help her get out of bed. We'd love extra prayers for today, since rolling over on her side hurts, much less trying to sit up and then stand. I'm sure the brace will also be painful since the drain tube is still in, and the incision site is very tender.

Thursday, January 26, 2012

What a Sweetheart!

Xiaoyun had been asleep for a couple of hours after the pain of the brace molding. She finally woke up and asked for orange sherbet. I went to get it, and when I came back she was trying to tell the nurse something. She was saying she wanted a room. I told the nurse what she was saying, and she said there are 4 kids waiting for a room and they aren't sure when she'll get one. Once she told Xiaoyun this, Xiaoyun looks at her and says 'You need to get my Mama a new chair. She can't sleep in that chair - it is broken" (the chair is broken, and Virgil spent a very uncomfortable night in it last night). Can you believe it? Here she has been through so much pain, and she's worried that I won't have a good place to sleep tonight!!!!!!!! WOW!!!!

Brace Molding

Yesterday's post said they made the mold for her brace while in surgery (which is what we were told would happen), but unfortunately they did not do that. They came in earlier to make one, and once they realized her back is not flat, they left and came back later with some help. It was a rough 30 - 40 minutes, to say the very least. They laid a cloth over her and used the fiberglass - like they use to make a cast - to make a mold of her front. That was painful, because they had to smooth it all down, which included the area where she had had the chest tube and the anterior/side incision. Then it really got ugly. They had to flip her over on her stomach (with her begging and crying for them not to), and make a mold of the back. I can not begin to imagine how much it hurt to have them touching the incision area on the back. It broke my heart not to be able to do anything about the pain. She had to lay that way until the fiberglass had dried and then the process of flipping her back over. She is sleeping now, thankfully. We are still waiting to get into a room again. The paperwork is complete, but right now all the beds are full. It will be good to get to a room. She is in a bed beside a little one and it is pretty noisy at times. They will have her brace ready tomorrow and then they will be getting her up. I know that will be very difficult, but necessary to begin the process of getting her well enough to go home.


Yes, Pam, she loves anything crafty, and loves to read, but she isn't reading English yet - still simplified Chinese (though we're working on the English :-) ! )

Wednesday, January 25, 2012

Xiaoyun's address

Would love to get mail from those of you who have asked!!!
Evelyn (Xiaoyun) Willoughby
c/o Kosair's Children's Hospital
231 E. Chestnut Street
Louisville, KY 40202

Room number will change,but they are good about finding us :-)

From those who have already sent messages - THANK YOU!! They mean so much!!!

Another Successful Surgery

Praise God!!! She's finished her fourth and final surgery! It didn't go as smoothly as they would have liked, but overall it went well. They put what the surgeon calls 'hooks' in the left side on T1 and T3, and also some hooks in the L1-3 level.When they tried to put a rod in however, the area around the hook at the T3 level crumbled. They were able to put a hook at T5, and ended up using two rods on the left side. That way they were able to adjust the rods as they went and once everything looked good they fixed the rods together permanently. Unfortunately, on the right side they were unable to put a rod in at all. Her spine is turned 180* on that side, and in order to put a rod in they would have had to cut through all the muscles in that area. Since her body already has a tendency to hunch forward on that side, the muscles (that would never be as strong again after being cut) would not have kept her as upright as she needed. Because of that she will still have some compression of the lungs on that side, but it will be better since her diaphragm has more space now. The ribs on the other side he described as now being spaced apart verses almost touching each other, so that lung has really been opened up. He estimates that she is now somewhere between 65* and 75* curvature (she was at 150*!!!). They made the mold for her brace while still in surgery, and it should be ready in 2-3 days. She can't walk until she gets the brace, but will be able to sit up. Once home, she will have to wear the brace all the time except when she is in the bed. She should need it for somewhere from 3-6 months depending on how she fuses. I'm fairly confident she will not be happy with the brace, because it will come up to her chin in the front (since the top left fusion area wasn't as strong, they need to make sure she keeps her neck upright while the bones are fusing.)
Prayers tonight for her pain and for rest for both her and Virgil. Our goal is to be out of PICU as soon as possible and back on a floor. Thank you so very much for all the prayers that continue to be prayed on her behalf!!!

She's in Surgery

Here is a pic right before they wheeled Xiaoyun back for her final surgery. As you can see, she's quite the trooper and was smiling until the medicine went to work. It was a restless night for us all. Probably a combination of anticipation, and little ones in the rooms on each side of us that were not happy most of the night.
Dr. Johnson gave us the rundown. Please forgive me for giving a very simplified version of what he said - I have a copy of the technical terminology and will post that later- but for now here is the gist of it: They will go in and remove temporary rods (going through the same incision as two weeks ago - posterior) and halo (YEAH!); she will have a CT that will give a 3-D image of where they are and what they want to do; they bring in 'Navigation System' which will guide the doctors and also do some of the surgery, since her vertebrae are so tiny. This system is very precise, but also slow, so things will take longer.; build her backbone from T2-L3; do more CT with 3-D imaging as they go along; and put in permanent rods. She will be hooked up to a neuromonitoring system, that watches muscles twitches, etc. to make sure neurologically they do no damage.
This is the most delicate of the surgeries and the longest (because of the down time waiting for the CT scans). Please continue those prayers!

Tuesday, January 24, 2012

Gift From Addison Jo Blair Foundation

This is a picture of Xiaoyun as she checked out a gift basket given to her by the Addison Jo Blair Foundation last night. Addison Jo was a little girl from our hometown who fought a brave battle with cancer. Her parents started this foundation to honor her memory. As we realized who the gift was from, it was all I could do not to start crying (which would not have been the best thing for Xiaoyun prior to surgery). We had prayed for this little one and her family, not so very long ago. Addison Jo continues to bless others with these gifts that bring a smile to a child's face. Thank you Blair family!!!!!!

Almost at the finish line

Xiaoyun was playing a game and didn't realize her Mamaw had just arrived from Alabama!
We are coming  to the end of the surgeries. Tomorrow around 8 am, Xiaoyun's 4th and final surgery will begin. Her Mamaw came in today to stay for a couple of weeks, which makes logistics so much easier with Elli and Enya. Xiaoyun had another furry visitor today that, from what I've heard, shared many kisses with Xiaoyun. She also had several human visitors, and cards and messages from around the states and even Spain! (And yes, friend in Australia, she'd love a message from Australia!!!) She got one from Singapore yesterday! It will probably be later into the evening tomorrow before I am able to update after surgery (unless there is a big gap between when the surgeon talks with us and she gets to PICU, in which case, I'll post sooner). Thankfully they treated for the UTI and that will not be an issue with the surgery. I continue to be amazed at her resiliency! Truly she is a miracle - when I think of what has happened in the last year and how God orchestrated all this, it just awes me!!! Thank you in advance for extra prayers in the next few days!!!

Monday, January 23, 2012

Xin Nian Kuai Le - Happy Chinese New Year!!

It is late, so I'll give just a brief update. Xiaoyun had a good day today. She and I were both blessed to get a massage from a sweet girl who wanted to be a blessing - and it was a blessing that we both enjoyed! Xiaoyun enjoyed having those little hands and feet pampered, and my shoulders felt better than they have since we started our hospital stay. Thank you Andrea!!! The art therapists came in and helped her make a crown to wear once her 'crown' (halo) is removed on Wednesday. In true Xiaoyun style, it is 'blingy', to say the least. She had several visitors today, and got a scrapbook that we will start filling up with pictures and cards once she gets through the next surgery. It will be good motivation to get up out of bed and sit in a chair. They did discover she has a UTI, and she received medication a few minutes ago that will hopefully take care of it. I'm thankful it was caught before we were any closer to surgery - we'd sure hate to have to delay it for any reason. Virgil, Elli and Enya came up this evening so we could rotate out, and we all celebrated Chinese New Year by eating the Chinese food brought to us yesterday. We will have a belated New Year celebration once Xiaoyun is home from the hospital.

Our Chinese New Year Celebration

Here is a photo of our Chinese New Year ;-) Elli and LiLi (Enya) were really getting into the stir fry! Xiaoyun is wearing her special glasses, so she can see all the action.

Questions/ Answers for posters

-Xiaoyun means little cloud and is pronounced sh (as in ship) ow (as in cow) yeen
-Aus, I can't figure out to email you (not very computer literate)
-Next surgery is Wednesday morning (final surgery - yeah!!) and will begin around 8 am and will last most of the day. A lot of that is down time. They will do a bit, then do a CT and check progress, and also use a machine that is very exact and does part of the procedure for the surgeons (can't think of the name of that right now and will post that later).
At this point we do not know what her final curvature will be, nor how many inches she will gain.
They will have her up walking the 3rd day and we'll be able to measure her then (we are excited about that :-)  !)
The rods they will put in are permanent and are designed to keep her back stable until the vertebrae fuse together. She will not be able to bend where the fusion is done, so bending will take place from waist down.
She will have a brace molded to her body after surgery, that she will wear for 3-6 months after surgery.
- Leonor and Juan, we haven't received card yet, but are looking forward to it!!!
-Thanks to all who have shared her video and all who have sent cards and well wishes (along with lots of goodies!!!!)

Sunday, January 22, 2012

Another Sunday Down

Emily, LiLi, Zak, and Elli
Xiaoyun's decorated halo (courtesy of big brother zak)
PICC line is working again!! So glad whatever the problem was, resolved itself so they didn't have to go in and redo that PICC. Her brother Zak, had to go back to Minnesota this afternoon, but we were all really glad to have the weekend with him. They got in quite a few movies and he decorated her halo.  Her food intake has been pretty good today. Her great Aunt Estell brought her a lot of Chinese food for supper, and we'll enjoy it again tomorrow to help us celebrate Chinese New Year (Happy Chinese New Year, John, if you are reading this!!!! Girl's were excited to get your message! They are doing so well! ) . Xiaoyun has been blessed with prayers and good wishes from around the world. We are truly thankful for each one!

Saturday, January 21, 2012

Xiaoyun had a busy day today. She had to have three chest x rays (which are painful) and got the chest tube removed (Yeah!). The PICC line issue was never resolved. She is still using the IV in the other arm and waiting for the IV team to determine if the PICC is still good. The x ray of the PICC showed no infiltration, and they are going to try just putting fluids in it again to see what will happen. By this evening she will be back up to her full 18 pounds of traction. She is quite happy to leave it on at all times, which is a good thing, since that will help determine how straight she ends up being in the end. Her incision down the back is looking great and seems to be healing nicely (though if I understand correctly, they go in the same incision again for the last surgery). She's eating well and all in all doing very well considering all that she's been through the last few weeks.

Friday, January 20, 2012

Change of Plans

Xiaoyun (with special glasses on) and Zak
So the slumber party was not meant to be. Xiaoyun had had a good afternoon, enjoying being with Zak and eating a bit. One of the child life specialist's had procured for her the one and only pair of special glasses in the hospital that allowed her to watch the tv while looking straight up at the ceiling. She was having a blast with those glasses and we were having a fun time, when all of the sudden she started telling me that under her arm felt swollen. I didn't think much about it, since it was around the area of her incision, and didn't look abnormal to me. A few minutes passed, and she started complaining about that area hurting and being hot. She looked at me and said "Mama, I'm not strong" I didn't know what she was talking about, but she went on to say that she was going to cry. Oh My Heart!!!! I quickly assured her that strong people cry and it was fine to let it out. The nurse came in and thought perhaps her PICC line had been infiltrated (leaking out). An x ray was ordered, and all her meds/fluids moved to her other arm where a backup IV was located. By then she was really hurting and the x ray made it much worse. They gave her some more medicine and once the fluids had been out of her PICC line for a bit, she settled down and started feeling better.Virgil walked into the midst of the chaos, and plans were changed and he stayed with Xiaoyun and Zak.  The x ray showed no infiltration, but they're not sure what is going on yet. The IV team will come in the morning and decide what to do. Hopefully she will not have to have another IV started tonight, but I'm afraid with all the stuff going into that one vein, it might blow. Please continue to keep her in your prayers!!!!
Xiaoyun rested better last night, though I could hear the pain pump being pushed fairly often. Early this morning they came in to do an xray and it didn't come out clear enough, so they came back in to do it again. Sliding that hard film under her back was very uncomfortable, and since then she's had a hard time resting. She had said over and over that her pain pump wasn't working, so they finally increased the amount of meds and now she's finally sleeping. She will be on her back until the next surgery, because her back is now unstable with all they did this previous surgery. The surgeons continue to be pleased, and this morning the other surgeon came in and mentioned how much everybody in the hospital thinks of Xiaoyun. Even in the midst of the pain, she continues to say thank you when someone comes in.
Her older brother, Zak, should have just landed at the Louisville airport a few minutes ago. He flew in from Minnesota just to be with her for this weekend. He and Emily (our 19 year old daughter) are planning on staying with Xiaoyun tonight and having movie and popcorn, if she's feeling like it. The secretary on the floor heard they were having a 'slumber party' and brought in bags of popcorn for them this morning. We continue to be blessed by all those who we come into contact with here at Kaosairs!!!
I've included pictures of PICU (where she goes after surgery each time), and of the view from her new room. It's hard to see, but she was trying to give a little smile in the pic.

Thursday, January 19, 2012

Prayers Answered!

Thank you all for the prayers! Xiaoyun and Virgil were able to rest some last night, despite being in a very loud area. Xiaoyun's only request, besides saying more pain medicine, was to be in her old room. She has such a hard time resting when there is a lot of commotion. When the surgeon came in this morning, that was what she asked him, and he was happy to oblige!!!!! We were so surprised, since we figured we'd be in PICU for several days, given the type of surgery she had had. I guess the doctor could also see how agitated she was with all the noise. We finally got to a room around 7 this evening and she's been resting since we got here. It surprised me the difference in her just getting into a peaceful area. The surgeon is very happy with how she is doing. He said in the 30 years he's been a surgeon, she's been the best patient he has had - every surgery going better than expected. Praise God for that!!!!! She's even eaten some solid food today, which is a huge improvement over last time. Will post more in the am.

Wednesday, January 18, 2012

3rd surgery complete/ much pain

Xiaoyun's 3rd surgery went well according to her surgeon. He was pleased with the amount of movement she had. They were able to remove 6 discs (they were hoping to remove 5), a wedge piece of two vertebrae, and a rib. The rib will be 'banked' until the next surgery, at which time it will be ground up and used to help fuse the vertebrae together. I'm not sure if the wedge of vertebrae was also saved for that purpose. She had to have a unit of blood, along with what they called 'cell saver', where they take the blood she loses during surgery, put it through a machine and then put back into her. She has a chest tube that we hope to have out in 2 days. We knew this surgery would be bad, but what I didn't realize is that they say this incision is considered more painful than if she'd had to be cut open for open heart surgery. She got to PICU around 3pm, and has been in quite a bit of pain since then. She has to lie flat for the first 4 hours and that is so uncomfortable for her. She kept begging for a pillow over and over again.
This is Virgil's night to stay with her, and since we didn't get much sleep last night, he sent me on home to try and rest before my long day/night tomorrow. Unfortunately, PICU is full, so she is in the open bay area, which will make it even more difficult for her to rest. As I am leaving, in the midst of all her pain, she says " Love you Mama, be careful driving home" Needless to say, I could barely see to get to the elevators because I was crying so hard. These surgeries are ripping my heart out, but also showing what a brave, incredible girl we have been blessed to have in our family! PLEASE say extra prayers for Xiaoyun tonight and in the next few days. They will be difficult ones for her.

Tuesday, January 17, 2012

Gearing up for Surgery #3

It's a shame that when you start feeling much better, you have to start all over again, but that is where we're about to be. The surgery is slotted for 9 am tomorrow. Today, except for a while this morning, has been a good day. She's able to get out of bed fairly easily on her own, and walked her loop around the floor pretty quickly. The child life therapist helped her create some jewelry today from a kit some sweet people brought her yesterday. She received quite a few cheer cards and mail today and loved it all!!!! We'll be sporting some Hello Kitty fingernails as soon as we're allowed to, thanks to JunFen ;-). Her older sister is trying to talk her out of a really cute purse and some jewelry two other sweethearts sent her. The outpouring of love continues to amaze and humble me. We are so blessed! She also had a furry visitor again today. As you can see by the photo, she loves animals! To top the day off, her Aunt Tonya brought her some Chinese food with the special sauce that she loves. I'm glad today has been a good one, since I know how hard the next few will be.

Xiaoyun making her crafts
Xiaoyun checking out our sleeping arrangements
Xiaoyun and her fun visitor
The world's largest balloon
*The excitement keeps coming! The 'balloon angels' as they are called, just came in with an armload of balloons and asked Xiaoyun which one she wanted. No kidding, when she saw the balloons she started screaming and laughing!!! She picked the biggest balloon they had and just thinks that's the coolest thing in the world LOL!

Monday, January 16, 2012

Xiaoyun had a restless night - couldn't get comfortable and complained about her back itching. She had what looked like a blister next to her incision that was bothering her, and at some point through the night it finally broke open. The doctors seem to think it was a reaction to some tape used during the surgery, but aren't sure. We had about one solid 1 1/2 hours sleep and the rest was intermittent. This morning the surgeon came by and said all looked well for the next surgery on Wednesday. It is an anterior cut that is on the right side. They will remove another rib and vertebrae/discs. I asked him how many, and his reply was "As many as we can get our hands on - probably about five." He thinks the surgery will be shorter than the last one, and we're praying she bounces back quicker than the last one. It will be such a relief when we can finally get the halo/traction off of her, though that won't happen until the final surgery. The physical therapist came and had her walk a loop around the floor this morning - probably about 200 yards, and we did the same stroll again this afternoon. She did have one really rough spell early afternoon, but once I got her up in the wheelchair and distracted, she calmed down (thank goodness!). The child life therapist came by to have Xiaoyun paint a paper hot air balloon and make origami cranes late this afternoon, and that was very enjoyable to Xiaoyun. The therapist hung them from her ceiling and it appears as though we have a flock of cranes flying overhead. By the time Baba got there for the evening, she was doing much better and moving freely (though slowly) on her own - such a difference than just a couple of days ago!

*BTW - if you sent Xiaoyun a cheer card the last few days, she didn't receive them. They had a glitch with their computer and lost some messages. If you wouldn't mind to resend them, she'd really love to get them!!!

nortonhealthcare.com  - click on Cheer Cards, and put Evelyn Willoughby (not sure if just Xiaoyun Willoughby would get to her. Thanks so much!

Sunday, January 15, 2012

Baba and his baby
Getting out of bed alone for 1st time since 2nd surgery. So glad to see that smile again!!!!

What an Improvement!!!!

Today has been so much better! Xiaoyun is actually walking to the bathroom, and even managed to walk down the hallway. She sat up for a couple of hours in her wheelchair, and has eaten quite a bit more food than she has in days. Her pain pump and IV are gone (still has PICC line, but not using it). We actually got to laughing about something, until it hurt her too much to laugh! The surgeon still is planning on Wednesday surgery. Besides removing some vertebrae and discs, they are also going to remove another rib. This will be an anterior cut. She's sitting up right now reading Diary of a Wimpy Kid (in Simplified Chinese), which is a far cry from where we were just two days ago. Praise the Lord for answered prayers!!!

Saturday, January 14, 2012

Xiaoyun made some good progress today. She got out of bed to sit in her wheelchair for a while, and walked to the bathroom twice today!!! She also ate a bit of her lunch and 20 bites of supper (we now have to count every bite and every ounce going into her, since she went so long without eating a bite). She's back up to her 18 pounds of traction - think about that for a minute - 18 pounds of weight pulling on her head, with an incision going down her back that is 12 inches long (all on a girl who is 46 inches tall and 46 pounds!!!) It is incredible what she is going through. Praise God for answering prayers!!!
I went up for the afternoon and came home to be with the other girls tonight. When I got home, I find out Elli had just finished getting the blood cleaned off her. She fell getting off the chair and caught the corner of the chair. Elli didn't say much about it, and it wasn't until Emily realized there was blood getting on her that they realized what had happened. She had a cut on her head about 1 1/2 inches long. Elli didn't start crying until she realized that there was blood running down her face. I cleaned her up some more, and fortunately it doesn't appear deep, though I'll keep an eye on her tonight. Not sure how much more excitement we can stand around here!

Lest it seem as though all I do is complain, I do want to take a minute and say how grateful I am:
For God's peace, and grace and strength
For the prayers of so many
For an incredible staff of people at Kosair's Hospital who are taking such good care of us all
For those who have fixed food
For those special people who are watching the girls everyday for us
For every email, Cheer Card, gift, handmade card, text message, phone call and love sent to Xiaoyun from all over the country
For the incredible strength and love of my husband and Xiaoyun's Baba
For the sweet prayers Elli and LiLi pray all day long for 'Xiaoyun and Baba and Mama'
For Em's help with the girls
For Xiaoyun's brothers, sisters, and family (and so many friends!!) that care so much
For so many more things that will have to wait for another day :-)

God is GOOD!!!!!!!

Thanks for those prayers!!

Sorry I didn't post last night. By the time I got home from the hospital and put Elli and Enya to bed, I had reached my limit and went to bed myself. Xiaoyun did get up twice yesterday - not by choice. She begged and cried to not be moved, which is difficult for a Mama who knows it has to be done. The second time she was up, she walked a few steps (with a lot of assistance) to have her standing xray done. Once we left there, we were able to go straight to the new floor (YEAH! The people in PICU are great, but it is a busy, noisy place, which makes it difficult for her to rest). It was a productive day - drain tube removed, dressing changed, sponge bath and teeth brushed, stood up twice, and moved rooms. Needless to say, by the time Virgil got there last night and I left, she had spiraled into crying and was not able to get comfortable. She was up to 13 pounds of traction before I left last night, so I'm guessing we are now at 15 pounds. Virgil said she (they) had a long night and the pain really kept her agitated. She did finally eat some jello yesterday afternoon, but I fully expected the feeding tube to be put in this morning. About 2 am, however, Virgil had a talk with her and told her if she didn't start eating what would happen. She asked "What's a feeding tube?". He told her and immediately she said she wanted some chips ;-). Since then she's eaten chips, part of breakfast, and I believe another jello. She also ordered stir fry for lunch. The doctors said this morning they want her up in her chair twice a day and walking a little today. I'll post more this evening!

Friday, January 13, 2012

Prayers Please!

Xiaoyun is feeling rough right now. Moving her causes quite a bit of pain. The therapist comes in around 2 this afternoon and will get her up and walk with her, which we know will hurt. If you have a moment around that time, we'd love all the prayers we can get!!! Also, they said if she didn't start eating and getting enough nutrients in today they will be placing a feeding tube down her nose. I was able to get her to eat maybe 2 ounces of chicken noodle soup a few minutes ago, which is the first food she's had since the night before surgery.

Thursday, January 12, 2012

Xiaoyun is resting well right now. This morning she was in quite a bit of pain, so they decided not to get her up or do the chest x-ray (since it is a standing x-ray). All that will happen in the morning, so hopefully she'll get a good rest tonight. Her blood pressure has been low, so they are backing off her pain medicine some. She's also running a 101.5 fever, that they're keeping an eye on. They feel once she gets moving tomorrow, that will go away. She did talk with me a bit (though she can only whisper right now) and we opened get well cards from all around the country. Those did bring a tiny smile to her face. She's back up to 7 pounds of traction and that will increase by a pound every 4 hours. If she isn't eating by tomorrow they will have to start some IV nutrition through her PICC line. She had some more nausea earlier today, but none this afternoon, so hopefully that is passing.
Virgil and I continue to rotate nights home with the girls (except the night prior to surgery when we both stayed up here). I can't begin to tell you how hard it is being an hour away from Xiaoyun when I'm with the other girls, or being away from the other ones when I'm up here at the hospital. It breaks my heart to have to say goodbye to my girls everyday. I'm so thankful for family and friends who take such good care of the girls while I'm away, but still it is hard. My heart goes out to those families who deal with long term health issues with their children. While the hello kisses are so sweet, those goodbye kisses just about do me in. I'm so grateful that we already have two of the surgeries behind us and that there is a light at the end of this tunnel. I'm even more grateful God is carrying each of us through this and doing it in such a mighty way! He continues to work miracles!!!!! Continued thanks for all your prayers!!!!!

Sweet Sleep

Virgil said Xiaoyun slept through most of the night, which is a praise! Today will be a different story, I'm sure, because the therapists will be coming in to get her moving some, and they want her to start walking. One of the doctors came by this morning and said she could grow quite a bit - some because of the procedure, but even after it is complete they said she'll continue to grow some. They said she has a lot of flexibility (which is incredible considering her curvature). The surgeon hasn't been in yet, so I'll update more later.
Prayers for today: they start her back on her traction, she has to start walking, and for the chest xray (to make sure there are still no tears in the pleura).

*Someone had asked about nutrition - they have found a high protein/ calorie juice drink that she will drink, she really likes the ice cream, and they found a stir fry she really likes (though not on the menu they made her one with everything in it she thought sounded good) They are trying to stay ahead of any nausea, which will make a big difference with the appetite. Today we'll start trying to entice her with any and everything, since the pain med will keep her from having much appetite.

Wednesday, January 11, 2012

Successful Surgery Number 2

Sorry it has taken me all day to post this. It's been a long day. Xiaoyun finally got to PICU around 2:30 this afternoon. The pleura has remained intact  (so far), so no chest tube was needed. She did, however, need a unit of blood when all was said and done. From what we can tell, it appears she has about a twelve inch incision down her back. Of course, it is bandaged up, so we'll probably know more about that tomorrow. The surgeon said her spine is turned almost completely around at one point from where it should be.They removed parts of four ribs (which the surgeon said will grow back to some extent), and put in the rods. They were very encouraged after opening her up to see what a difference the traction and temporary rods were making, especially in her lower back. She goes for another chest xray tomorrow to see if there were any tears. They want her up walking some tomorrow and they begin her traction again in the morning (they gave her a break today). They'll start her back at 5 pounds and then gradually build back up to 18 pounds just in time for another surgery next Wednesday.
Speaking of next Wednesday, the surgeon was really stressing the fact she shouldn't do any more pain medicine than is absolutely necessary after tomorrow, because it will cut her appetite down, which in turn may cause her to heal slowly from this surgery (which would mean having to postpone the next surgery). We'd appreciate prayers for a good appetite and minimal amounts of pain so she can avoid the medicine.
More to follow in the morning when I can think a little clearer!

One week and two surgeries down!!! Praise God!!!!!!!!

She's in surgery

Xiaoyun went back for her surgery around 7:15 am. Thanks to a great nurse, who was right there with her pain medicine every two hours, and all the prayers, we all slept last night. It was the best night sleep we've had since getting here. She was doing fine this morning when she went back, and graced us with one last smile before they wheeled her back. The surgeon said it could take 3 - 6 hours, and they had no way of knowing until they start the procedure. Since they are putting in a temporary rod, they will drop her traction weight down to 5 pounds after surgery and then slowly build back up. When they go in to remove the ribs, they said there is a chance that the pleura (?), the paper thin outer covering of the lungs, may tear. It that happens they will have to put in a chest tube. He said where they cut the ribs there could be rough end that could tear the tissue after the surgery is over. If that is the case, she will start having difficulty breathing, and they will need to insert a chest tube at that time. He said that may happen even 3 days after surgery. Just something to watch for. Will update more as we get updates. Thank you all for the prayers!!!
Xiaoyun, last night (Day 7) playing with Baba's glasses

Tuesday, January 10, 2012

Another Long Night

Virgil and Xiaoyun had another long night (we seem to be getting into a pattern here!). It wasn't until at least 3 am before she went to sleep (or Virgil) She couldn't get comfortable and even though they changed her position numerous times, it didn't seem to help. At a little after 4 am she tried to talk Virgil into taking a walk around the floor. She was trying to get off the traction ;-) . Unfortunately for her, they want her to be on as much as posible in preparation for the sugery. The xray showed that the traction is really helping the lower back in particular. She went in for a PICC line this morning around 9:30.  Dr. Johnson talked with Virgil this morning, and said they will be removing 5 or 6 ribs (the info yesterday was from an assistant and I'm not sure if they were looking at the wrong part of the file or if they changed their minds after seeing the xray) and inserting the temporary rods at 7:30 tomorrow morning. This is a posterior cut and we're not sure how long the incision will be. Hopefully we will all be able to get some rest tonight, because I'm not sure how much we'll be getting for a while after the surgery.

Monday, January 9, 2012

Xiaoyun had two of the friendliest visitors ever today! We loved her smile so much we had to share! She's still getting queasy at times, but they are doing a good job of managing that and the pain. We actually got an hour nap this morning (thanks to phenergen!!!). They came in and took an xray while in traction, but no word yet on how that looked. They also got her an air mattress just a few minutes ago, so we're hoping that will help with the back pain.
Tulips from her cousin Mandy
Xiaoyun also received some cards from families around the country whom we've never met. We are united with these families, however, by the special bond of adoption. I'm going to bring a map up tomorrow and we'll start marking off all the different states she receives messages from. I must confess, just reading these cards choked me up and it was all I could do not to start bawling!!! So many people showering our sweet daughter with love!!!!!!! We thank you all!!!

Sunday, January 8, 2012

Rough Night/ Good Day

Xiaoyun and Virgil had a long night. She's now up to 18 pounds of traction and it was causing muscle spasms. The most sleep they got at any given time was about 30 minutes They started her on muscle relaxers this morning and that has made a world of difference. She has been hours now without pain medicine and it's been about 7 hours since she got the muscle relaxer. She has walked the floor several times and had quite a few visitors today. We took a tour of the ICU, where she will be after the surgery on Wednesday. She likes her room here in this area, and is not happy she'll have to relocate for a while. I don't think she'll even be aware of which she room she has once the surgery is over :-( . She goes for xrays tomorrow to see how the traction is working. I've took a picture (below) of her bed with traction on so you can have some idea of her setup. Also, she posed in front of her wall covered with messages sent to the hospital for her. I'll update more after xrays tomorrow!!!

Saturday, January 7, 2012

4th Day Down

They say a picture is worth a thousand words, so here is how Xiaoyun is feeling:
Mama winning at Trouble

Baba getting a hearty laugh out of Xiaoyun - a beautiful sound!

Today was the best day so far. She is up to 16 pounds (maybe 17lbs. by the time I finish writing this). The only problem today was a little nausea. The smell of the food seemed to bother her. They are concerned she is not getting enough nutrients and are trying to find some sort of supplement drink she can tolerate. She can tolerate oreo cookies however  ;-) !!! She took several strolls around the floor and moved her head quite a bit more while in traction. Thank you all for continued prayers - they are working!!!!

A bit about Xiaoyun

I had someone ask a little info about Xiaoyun. She turned 14 yrs. old, 15 minutes after we arrived back in Louisville from China (May 2011). She's from the province of Guizhou. Xiaoyun has a 150 degree S curvature of her spine that had never been treated. Her lungs are very compromised (she has 33% lung function). She is getting a series of four surgeries in the next 6 weeks or so to correct the spine as much as possible and give her lungs room to expand.

Friday, January 6, 2012

Xiaoyun's day 3 went fairly well. It seemed like a constant day of adjusting traction so she could get into a comfortable position. Once we hit that 15 lbs. it really started to bother her neck and back. At supper time she told me her leg had fallen asleep, which sent me quickly to find the nurse. The surgeon had told us to watch for two things - her eyes not tracking properly and any odd sensations in her legs. The doctor had them remove a pound and once that happened the tingling went away. They put the weight back on last night before bed, and I think she is going to be able to tolerate it. 5 more pound to go. I still find it incredible that they can put 20 pounds of weights attached to the skull of a child who only weighs 46 pounds! Her appetite is better and I think we're over the nausea for now.
Xiaoyun had a visitor yesterday - Coach Strong, the U of L football coach. He had some other people from the college with him, and they were visiting the kids on Xiaoyun's floor. He was very friendly, stayed several minutes to talk with Xiaoyun, and then gave her a little bear dressed as a U of L cheerleader.
Xiaoyun also got a gift from a hospital donor - an American Girl Doll (her first) complete with her own wheelchair! Xiaoyun couldn't stop smiling :-) Right after that, a package arrived from her friend Mia (and her family) that had a bear dressed in a complete scrub outfit (Emily, our older daughter who's in nursing school, is planning on taking that from Xiaoyun when she's not looking- LOL).
The art therapist came in and they painted butterflies and dragonflies that they will be making into a mobile in the morning, and will hang from the ceiling above her bed.
We're pretty sure if Xiaoyun could get the nurses to bring her her pain medicine every hour instead of two hours, she'd never leave the hospital!!!!!!
Princess Xiaoyun wearing her crown and sitting on her throne.

Quick update

All is going well. Xiaoyun rested as much as you can rest in a hospital when you are having weight added to your traction through the night. She is up to 14 pounds and it is now starting to bother her neck. If you can imagine having 4 screws inserted into your skull, attached to a metal ring, that is attached to a rope/pulley, that is attached to 14 pounds of weights, you can probably understand why she is in pain. It makes me hurt just looking at it!!!! I will post more later today - I think I am still in a haze myself right now ;-)

Thursday, January 5, 2012

Update on Day 2

Xiaoyun is doing better today, though still having some problems with nausea. Right now she is sleeping peacefully beside me, thanks to pain medicine and nausea medicine. She now has 11 pounds of traction on her and it is very uncomfortable for her. The surgeon came by today and said he'd like for her to get up to 20 pounds of traction. She and Virgil took a tour of the floor with a special wheelchair and once she wakes up, she and I are going to try and get up and explore the floor we are on. Everyone has been so kind, and this hospital truly caters to the kids - from the nurses (we've had two wonderful ones so far) to the volunteers. They brought Xiaoyun an email that someone sent (thank you Mihelic family!) - the hospital has a link on their site so you can send messages and they print them out and bring them to the room. It is a huge blessing to be in a place that has Xiaoyun's best interest at heart and desire to make her as comfortable and engaged as possible. Tomorrow she will have an art therapist come in to do crafts with her if she is feeling up to it. We thank you all for your continued prayers!!!

Day 2

I came home last night and Virgil stayed with Xiaoyun. After I left, Xiaoyun started running a fever, but thankfully it is now gone. The update I just received was that she did fairly well through the night. They actually got a solid two hours sleep from 4-6 am. She tried to eat a bite of breakfast, but said that chewing hurt her head (because of halo). Jello seems to be her only food at this point. Hopefully she can get up moving more today and get a bit more adjusted to her new 'crown'.

*The reason I came home (actually two reasons) would be Elli and Enya. we decided to try to give them as much normalcy as possible while their sister is an hour away in a hospital for 6 weeks. Since both of the girls are still in that attachment/ bonding stage, we felt it best to at least have a part of their normal routine everyday. I will say, however, leaving the hospital last night was SO difficult, and had Virgil not been pushing me out the door I'm not sure I could have left. Elli and Enya have been so sweet, and I've heard them stop and pray with each other several times for their 'Xiaoyun jiejie (big sister)'.

Wednesday, January 4, 2012

Xiaoyun's surgery

Xiaoyun's first surgery went well. They were able to place the halo using only the 'I don't care what you do to me' medicine, and it went very quickly. Unfortunately, nausea has been a problem since she got into her room and both nausea meds they've given her have proven somewhat unsuccessful. They had to start giving her some fluids via IV and right now she's sleeping peacefully. They have started her out with 5 pounds of traction and will increase a pound every few hours. The goal is 10 - 12 pounds.
A major praise is that Xiaoyun gave her life to the Lord last night!!!!!!! She also told us she wasn't scared because she knew God was taking care of her, people were praying for her, and Baba and Mama would be right here with her.
We are at the beginning of a long six week hospital stay. The goal is 4 surgeries to happen during that time. The second surgery will be to remove ribs that have grown up into her spine and to insert temporary rods. They think that may take place next Wednesday. Xiaoyun's curvature is 150* and her lung function is only 33% so every surgery carries a great deal of risk. They do hope to bring her curvature down to 80* and give the lungs room to expand.
We thank each of you for your prayers and concern! It has been a long day, so I'll post more tomorrow :-)