Khloe has gone with Karen and Grace to Hong Kong for treatment. She will be in Hong Kong for several months, and the treatment process is quite extensive, involving multiple doctors and an estimated 15-hour surgery. In addition to treating her bladder extrophy, she also needs treatment for a hip abnormality and possible treatment for an anal problem. We are so grateful to MedArt in Hong Kong for coordinating Khloe's treatment.

Here is the current schedule for her treatment over the next few weeks:

9.8.08: Meeting with Pediatric Urologist and Tests.
9.9.08: Meeting with Pediatric Surgeon.
9.10.08: Meeting with Pediatrician.
9.11.08: Meeting with Orthopedic Surgeon.
9.12.08: Meeting with Plastic Surgeon.
9.13.08 to 9.17.08: No appointments
9.18.08: Khloe is admitted to hospital for surgery.
9.19.08: Final surgery preparations.
9.20.08: Surgery Day!

Please check back frequently for updates on Khloe's progress!

September 8, 2008
We met with Dr. Ngan, the head surgeon and pediatric urologist on Khloe's case. We discussed the treatment plan over the next few weeks, and then took Khloe for blood work, x-rays, and CT scans. It was a busy first day!

All these appointments are exhausting.	Loves to chew on cloth.

September 9, 2008
Today we saw a pediatric surgeon. He gave us some good news about her anus; it may not need much treatment. The final decision will be made when all the doctors have a group consultation next Monday.

Dr. Peter Yip- pediatric surgeon

September 11, 2008
Today we met with the orthopedic surgeon. He said the surgery to correct Khloe's pelvic bone deformity is going to be very difficult. They can bring the pelvic bones together by cutting the tops and wiring them together until they have healed properly, but the main challenge he faces is that since the space he is working with is so small, it could be difficult to properly position all of her organs and her bladder. The orthopedic surgeon needs to consult with the urologist to decide a final course of treatment. Also, we are going back into the center of town today to meet with a cardiologist. Khloe's heart is slightly enlarged, and we need a cardiologist to evaluate the situation and decide whether or not there are any risks with her having surgery. Appointments, appointments, and more appointments! Today was a long day, but Khloe is a trooper. Please continue to pray that the doctors have wisdom and agreement about the best course of treatment. They are an amazing team, but it is still an incredibly difficult process with many competing factors, and determining what is best for Khloe isn't going to be easy.

Examination	Dr. Lee- orthopedic surgeon	Dr. Lee with Khloe

September 11, 2008 #2
The cardiology visit was interesting! Khloe is such a squirmy little girl that she had to be given some medication to make her sleep before they could do the sonogram. She didn't think it was time for a nap, so she fought and fought, but finally she drifted off to sleep and they were able to do the sonogram. The results show that she has fluid around her heart which made it appear to be enlarged on the x-rays. Most likely, this fluid is the result of a viral infection she had a couple of weeks ago. The plan is to redo the sonogram next Thursday before she is admitted to the hospital – they will make sure it hasn't worsened before doing surgery. Hopefully they'll find it has gone down!

	Taking medicine

September 12, 2008
Today we saw a plastic surgeon- Dr. Kenneth Hui. His role during surgery will be to find enough skin to be able to cover Khloe's bladder after it is properly placed. This is done by doing a Reverse Tram Flap. Skin from her upper belly will be cut in a flap and swung like a hinge to cover the bladder. If there is not enough skin from the Tram flap, skin grafts will need to be taken from her thighs to complete the closure.

Dr. Hui examining Khloe.	Dr. Hui & Khloe

September 13, 2008
Today was a down day and Khloe really needed it. She has been teething and all the appointments and teething caught up with her.
She began running a fever so it was good to be able to give her a chance to rest.

Drinking a bottle and wrapped in a cool cloth to bring down her fever.	Even with a fever she had a smile for us.

September 16, 2008
Today we went to the hospital to have Khloe's body cast pre-made.
After surgery, if everything goes well, she will need to remain in this cast for six weeks. Otherwise it will be longer.
Needless to say Khloe was not a happy camper through the process.

Form Khloe was laid on to make the body cast.	Preparing the initial sleeve.	Fitting it to her body.
Preparing the casting material.	Wrapping the gauze before the casting material.	Applying the casting material.
Not a happy camper.	Waiting till hardens.	Cutting off the cast.

September 17, 2008
The Plastic Surgeon we saw last Friday is not going to be able to participate in Khloe's surgery on the 20th, so today we visited a new plastic surgeon. Dr. Ming is happy to join the team, and he was able to give us his treatment plan. His first plan is to use skin from her stomach to cover the area. If there isn't enough skin to cover the full area, he will need to do some skin grafts. He plans to take these from the scalp. He will not cut so deeply as to damage the hair follicles, so her hair will grow back out and cover the scar. We learned today that skin from the scalp used as a graft tends to heal more quickly than skin from other parts of the body! Khloe continues to be an incredible little patient! She's a joy to be around, and all the doctors and nurses have thoroughly enjoyed getting to know her.

Dr. Ming	Measuring the deformity.

September 18, 2008
Today we are headed back for another appointment with the cardiologist. After the last ultrasound revealed fluid around her heart, they wanted to do a follow-up ultrasound to ensure it hasn't worsened. We hope they find the fluid has gone down! If everything goes smoothly, Khloe is scheduled to be admitted to the hospital at 7:00 p.m. tonight. Karen will stay in the hospital with Khloe the first night and most of the day Friday. Grace will join them on Friday and spend Friday night in the hospital with Khloe. We aren't going to leave her side until the surgery begins!

September 20, 2008
The surgery was an incredible success! Khloe's surgery took only 10 hours instead of 15. The head surgeon was so excited. He said the surgery went much better than they could have ever hoped. Every step went perfectly, and he said it was the best job they have ever done. The orthopedic surgeon was able to get her pelvic bones to come together perfectly so that the plastic surgeons were able to do a complete closure with no skin grafts needed at all. (We were worried about what they would do if they didn't have enough skin for the skin grafts, and she didn't need them at all!) Also, that full body cast they made last week is no longer needed. This is a complete miracle, as they did not think it would be even a remote possibility that they could complete the treatment in such a way as to avoid using the whole body cast – it hadn't been mentioned as a feasible possibility. Since they were able to put pins in her pelvic bones, which they didn't expect to be able to do, she only has the lower half of the cast. They then wrap her up to keep her hip stationary. However, since it isn't the full cast, it allows for more touch and a little more freedom. Khloe looked great and even gave us a smile when we saw her in the recovery room.

Khloe in her hospital bed.	It's hard work getting an IV.	Surgery day.
headed to the surgery room.	Left- anesthesiologist right - Dr. Ngan.JPG	off to surgery.

September 21, 2008
Khloe continues to do well. Two of her doctors stopped by to see her today, and they are pleased with her progress. Her body functions are working well, and she has begun to drink formula again. Blood work showed her hemoglobin was low, so they decided to do a blood transfusion. Dr. Ngan said that these cases usually have no bladder control. Time will tell! We're hoping there is no leakage and that we'll have another miracle that gives her bladder control. Today, Khloe has been a bit uncomfortable at times, but they have done a good job controlling her pain. Anyone would be uncomfortable in a partial body cast!

	blood transfusion	taking her pressure and temperature.

September 23, 2008
Though a Category 8 Typhoon hit Hong Kong today, we are safe and sound. Khloe had a great night Monday night. She slept for 6 solid hours, which she really needed. The previous night had been very rough; she didn't sleep much at all. She had been in some pain, and she had problems with her IV. But, they were able to address both of those issues Monday night, so she slept much more deeply Monday night. She continues to improve each day, and though a storm is raging outside, she is kept in perfect peace.

October 6, 2008
Khloe continues to improve. She has been so much happier since her IV has been removed. Now she can move both hands- and she is making up for lost time.
It is funny to see her with both arms waving and her feet going at the same time.
Since Grace and I had to return to Beijing we hired two nannies to care for her in the hospital. They have been doing a wonderful job.
Khloe continues to steal hearts with her wonderful smile and everyone, nannies, nurses and visitors have all fallen in love with her.
Basically she is getting spoiled- I feel sorry for our nannies when she returns. :-)
Karen Brenneman

Khloe loves to move.	What's that ball on my head?	Blowing Bubbles

October 7, 2008
I went to see Khloe two times last week. The lady, Ms Yeung, who is the caretaker is a very kind lady and she is very fond of Khloe. I am sure she will try her best to look after her. She said that Khloe is a very active child and she only takes short naps during the day. Khloe often tried to lift up her neck to move her body but because of the body cast she could not move much. She also lifts her hands to indicate she wants to be picked up but that could not be done either. She has to be content with us talking and patting her on her chest. She is growing some new teeth and she likes to eat the teething biscuits. I got her some baby food and a finger brush to brush her teeth and some edible toothpaste to facilitate cleaning. Another lady who is a patient of mine also visits Khloe a couple of times and brought her some toys and things that she needs. Khloe actually has more toys than she can play with.

Yesterday when I was there, Ms Yeung told me that the doc has removed three of the four catheters inserted into her bladder.There is still one attachment and I can see some traces of blood . She must have felt pain and she was a bit cranky . Maybe because of this, Ms Yeung can now pick up Khloe from the bed and cuddle her and Khloe is really liking this. She touches the face of Ms Yeung to show her affection. Looks that some kind of bonding is already taking place between the two which is good. Ms Yeung told me that Khloe will cry when she leaves to go home in the night.

Khloe is recovering and learning some baby talk. Maybe she will learn Cantonese first!
Dr. Eilly Lau

October 14, 2008
Khloe is doing very well. All catheters have been removed and she is voiding from below. Her hips are healing as expected. I think she voids intermittently, although I expect she will not be perfect. Her long term potential of continence is reasonable.

She caught a cold from one of the visitors. She has a slight wheeze. Otherwise she is fine.

She will stay in hospital till her discharge which should be around 4 weeks later. I think she has a good time despite being in hospital. She is happy with her nannies who seem to be doing a great job.

We will let you know when she is about to be discharged.
Dr. John Ngan

October 23, 2008
Khloe 's orthopaedic surgeon said that she can probably remove her plaster cast after this week. They x-rayed her and saw the wound was healing well; but Dr Ngan suggested that she should have the cast on for two weeks more to play safe. I am trying to find out if she needs any follow up physiotherapy. She had all her bladder catheters removed over 10 days ago and now she can play with others more freely as she does not need to be attached to the bed. She is quite a charmer and the nurses like playing with her.

Khloe had some fever on Sunday and today they found out that she has an urethra infection and after culture they found quite a nasty bug. (This is pretty typical and her surgeon said this shows her bladder is beginning to function) They have put her on oral antibiotics now and may consider intra-venous route if the oral route is not effective. Today Ms Yeung (her nanny) told me that Khloe's fever is gone.

Looks like that it will be another month before Khloe can go back to BJ. Meanwhile, I'll watch over her and give you some update when appropriate.
Dr. Lau

November 4, 2008
Khloe is doing extremely well. Her recovery might seem very simple and expected to a bystander. But the smooth recovery that she enjoys is not routine even to big centers in US and is due to careful preparation and execution from all medics. As in most complex cases, we are happy with a comprehensive care plan understanding that we have to allow a lot of flexibility.

We are not done with her. We need to answer all questions to our satifaction before we can discuss them with you with proper sense. Otherwise we do not have answers for you. We understand our responsibility to you and Khloe and want to return a child to you that is healthy or at least one that we can manage from distance.

We are sorting out her bacteriuria, a common ocurrence in a proper exstrophy closure as these children do not know how to urinate and they typically have reflux. She does not have a fever at this point. Her CRP is fluctuating. However, we do not want to return a child who is coming down with a febrile infection especially before we can properly assess her ureterocele, which I told you about in my last report to you. Her cast was removed on Saturday. We now have a chance to assess her right renal unit properly. She will receive a repeat ultrasound and a MAG3 renogram tomorrow to confirm that it is not an obstructive system (which by inferrence, should not be as there was no preexisting hydro)

If everything is well, she may be able to leave in 7-10 days. But I will tell you the first day I know.

By this weekend, she can be allowed to have some outside activities with the nanny who has been caring for her in last 5 weeks. .

Do not worry about all these. We can talk when you return to pick her up so that you will understand. I will help you take care of her.

Dr. Ngan

November 13, 2008
Khloe is finally home. On November 10th I returned to Hong Kong to pick up Khloe.

We were able to have a going dinner to thank friends who helped make this surgery possible for Khloe. It was especially hard for her nannies to say goodbye to her and many tears were shed.

Checking out of the hospital we had to watch and make sure the nurses didn't hide her. :>) Khloe had made a lot of friends and everyone was sorry to see her leave. But in Beijing everyone was happy to have her back and to see how well she looks.

Physically Khloe continues to improve. Her bladder is already beginning to hold urine. Her hips are also doing well and are beginning to mold around her bladder. Something that does not happen!

We would like to thank each one who helped make this life change possible for Khloe.

Blessings,

Karen Brenneman

Khloe & friends	Khloe & her nurses	Khloe - making more friends
Khloe & her night nanny	Khloe & her day nanny