Thursday, January 13, 2011
Heading home!
Tomorrow we have an x-ray and then see the doctor at 10:00 and then we get to go HOME! This visit has been a wonderful experience in almost every way. We got lots of answers and some solutions. Jia is doing really well with her treatment. We have met many new friends who share the same condition as Jia and now have people we can talk to and ask questions when things aren't going so well. I am so thankful to God that we found our way here. He has blessed us in so many ways!
Monday, January 10, 2011
More X-Rays
Today Jia had another abdomen x-ray. She has become a pro at them. She knows where to go and that mommy has to wear a special apron before they take a picture of her tummy. We then met with the urologist. We waited over 1 1/2 hours before we saw him. It was hard but considering all of the appointments we've had, it wasn't too bad. He said that Jia's bladder function is unknown and we won't know for sure until after her surgery.
We went to the Children's Museum afterwards and it was incredible! If the snow doesn't keep us in we will probably go back there on Wednesday and Thursday and I will take my camera this time.
Please pray the snow doesn't keep us from coming home on Friday!
We went to the Children's Museum afterwards and it was incredible! If the snow doesn't keep us in we will probably go back there on Wednesday and Thursday and I will take my camera this time.
Please pray the snow doesn't keep us from coming home on Friday!
Sunday, January 9, 2011
The Weekend
Friday morning Kirk and I attended a lecture by THE doctor on Jia's condition. He was also the doctor who did her exam on Thursday. She has the worst case scenario for kids with her condition. We were prepared for that, knew that might be the situation. She will have bathroom issues her entire life. However, they can be managed.
She also had to have blood drawn, that was rough but we had a great nurse who drew three tubes in about 30 minutes. Because of what they found in the exam on Thursday she didn't have to go to some of the urology appointments that were scheduled. That was a nice break. We met the doctor again also. He just expanded upon what he had told us on Thursday.
Saturday we went to the Creation Museum, a one-of-a-kind Biblically based museum. It was impressive, but didn't thrill the kids. I'm glad we went but would like to have spend more time. Luckily, we will be in Cincinnati ALOT over the next 10 years so I'm sure I can get back there. We also went to one of the largest supermarkets in the U.S, Jungle Jim's. It was neat and we found some of the girls favorite cookies from China there!
Today, the boys and Kirk headed home to beat the snow that is coming. They arrived safely and are thrilled to be missing school tomorrow. We've had about 2 inches here but it has been really cold. I hope it doesn't snow so much that we can't get home on Friday!
Thank you for all the prayers!
She also had to have blood drawn, that was rough but we had a great nurse who drew three tubes in about 30 minutes. Because of what they found in the exam on Thursday she didn't have to go to some of the urology appointments that were scheduled. That was a nice break. We met the doctor again also. He just expanded upon what he had told us on Thursday.
Saturday we went to the Creation Museum, a one-of-a-kind Biblically based museum. It was impressive, but didn't thrill the kids. I'm glad we went but would like to have spend more time. Luckily, we will be in Cincinnati ALOT over the next 10 years so I'm sure I can get back there. We also went to one of the largest supermarkets in the U.S, Jungle Jim's. It was neat and we found some of the girls favorite cookies from China there!
Today, the boys and Kirk headed home to beat the snow that is coming. They arrived safely and are thrilled to be missing school tomorrow. We've had about 2 inches here but it has been really cold. I hope it doesn't snow so much that we can't get home on Friday!
Thank you for all the prayers!
Thursday, January 6, 2011
Day 3 of Tests
Today Jia was scheduled for exploratory surgery at 6:30 a.m. They called last night to tell us it had been moved to 9:30 a.m. We arrived at 9:30 went through the pre-op stuff and didn't go back until 12:30. Jia was wonderful. She whined before we went over that she was hungry and thirsty but didn't complain much at all after that. Again, the staff was incredible. They gave her baby doll a hospital bracelet like Jia's and even put a bandage on her baby's wrist that looked like the IV Jia had when she woke up. Jia got a little upset when she had to breathe in the gas but was asleep within 10 seconds. It's soooo hard to watch your little girl be put to sleep like that.
The change in schedule messed up her kidney ultrasound that was scheduled for 1:00. I talked to them and they actually had an ultrasound tech come up and do the ultrasound in the recovery room so that we could leave immediately after she was fully awake. I cannot say how impressed I am with them here. They work together to do what is best for the child. If they had not done that we would've had to get her dressed, go to another department, check-in, wait to be called back, and then wait for the technician. This way I held her while she was still groggy and they did the whole thing in about 10 minutes.
After the surgery, we met with the doctors and got not-so-great news. Jia will have to have a pretty major surgery in the next few months. We will probably wait until the summer. She will be in the hospital for a minimum of 11 days. They will do a lot of internal work that will correct a lot of what the surgeons in China did. This will not correct everything but will help her systems to work better. During that time in the hospital she will not have anything to eat or drink by mouth, only through a tube. YUCK--that is not going to be fun.
On a much happier note, my mom and boys arrived today! They came a day early to avoid the snow that may come tomorrow. I am thankful they made it safely and the girls were so excited to see them. Now, we just have to get them back home on Monday when they are calling for more snow!
The change in schedule messed up her kidney ultrasound that was scheduled for 1:00. I talked to them and they actually had an ultrasound tech come up and do the ultrasound in the recovery room so that we could leave immediately after she was fully awake. I cannot say how impressed I am with them here. They work together to do what is best for the child. If they had not done that we would've had to get her dressed, go to another department, check-in, wait to be called back, and then wait for the technician. This way I held her while she was still groggy and they did the whole thing in about 10 minutes.
After the surgery, we met with the doctors and got not-so-great news. Jia will have to have a pretty major surgery in the next few months. We will probably wait until the summer. She will be in the hospital for a minimum of 11 days. They will do a lot of internal work that will correct a lot of what the surgeons in China did. This will not correct everything but will help her systems to work better. During that time in the hospital she will not have anything to eat or drink by mouth, only through a tube. YUCK--that is not going to be fun.
On a much happier note, my mom and boys arrived today! They came a day early to avoid the snow that may come tomorrow. I am thankful they made it safely and the girls were so excited to see them. Now, we just have to get them back home on Monday when they are calling for more snow!
Wednesday, January 5, 2011
Day 2 of Testing
Today we had to leave our hotel by 7:00 so it was a little hectic. They called us right back to radiology and they were awesome! They let Lillie Mei come back so that both Kirk and I could be with Jia. They provide a service called "Child Life". Their job is to do nothing except make the patient comfortable. She played games with Jia, brought in toys, brought in a DVD player, talked to her about what was going to happen, etc. I have never seen anything like it. They even brought someone in to sit in the room with Lillie Mei so we wouldn't be distracted. Lillie Mei was fine with it since she could see us. Lillie Mei even got to push the button that took the X-rays. Even with all of that, Jia had a hard time with the contrast enema, who wouldn't. She got pretty upset but calmed down quickly. We hope that is the hardest test of the week.
We were out of there by 9:15 and decided to head to the aquarium. The girls loved all the fish and it was almost empty so it was a nice trip. About 2:00 they called from Ronald McDonald House and said they had a room for us. We quickly packed up at the hotel and headed over. I cannot express how amazed I am by this place. When we arrived we were taken to a conference room to go over the rules and procedures, etc. They gave the girls a bag full of surprises, teddy bears, blankets, crayons, Little Pet Shop toys, etc. They were thrilled.
It is a humbling experience to be served in this capacity. We are asked for a $25 donation per night but no one is turned away if you cannot pay. Groups come in and prepare meals every day. The refrigerator and pantry and stocked for us to use. They have movies to check out, games to check out, a playground, a game room, a playroom, etc. They also provide activities for the kids, the girls got "manicures" tonight.
I met one family who has been here for a month and Kirk met one who has been here since October and expects to be here for a year. I cannot imagine how these families would make it without this place. It is unbelievable. You know how you have always seen that box at McDonald's that you can drop your change into? I will never look at it the same and I challenge everyone to drop in a few coins at each visit, it is an amazing place.
I will try to post pictures later.
We were out of there by 9:15 and decided to head to the aquarium. The girls loved all the fish and it was almost empty so it was a nice trip. About 2:00 they called from Ronald McDonald House and said they had a room for us. We quickly packed up at the hotel and headed over. I cannot express how amazed I am by this place. When we arrived we were taken to a conference room to go over the rules and procedures, etc. They gave the girls a bag full of surprises, teddy bears, blankets, crayons, Little Pet Shop toys, etc. They were thrilled.
It is a humbling experience to be served in this capacity. We are asked for a $25 donation per night but no one is turned away if you cannot pay. Groups come in and prepare meals every day. The refrigerator and pantry and stocked for us to use. They have movies to check out, games to check out, a playground, a game room, a playroom, etc. They also provide activities for the kids, the girls got "manicures" tonight.
I met one family who has been here for a month and Kirk met one who has been here since October and expects to be here for a year. I cannot imagine how these families would make it without this place. It is unbelievable. You know how you have always seen that box at McDonald's that you can drop your change into? I will never look at it the same and I challenge everyone to drop in a few coins at each visit, it is an amazing place.
I will try to post pictures later.
Tuesday, January 4, 2011
MRI is Done!
Jia did great today. Kirk went back with her and I waited with Lillie Mei. They put her "to sleep" with the gas beore they used any needles so she did fine. It took over 2 hours before they called us back to get her. She was extremely "loopy" but is slowly recovering. She keeps telling me she wants to go back to the doctor! We were super impressed with everyone at the hospital. Their customer service was excellent. We won't get in at The Ronald McDonald House tonight, maybe tomorrow. We won't know any results until we meet with the doctor on Friday. Thanks for all of the prayers!
Monday, January 3, 2011
We're in Cincinnati
I'm having China flashbacks. I'm sitting in a hotel room with the girls in the bed across from me while updating the blog. While, I don't want to go to back to China anytime soon I would gladly leave this minute if it would keep Jia from going through all of the tests she is getting ready to endure.
We are staying in a hotel until a room becomes available at the Ronald McDonald House which is just across the street from the hospital. Jia will be an outpatient the entire time we are here so the proximity will be nice.
Here is our itinerary
-Tuesday, Jan. 4- MRI under sedation at 11:00
-Wednesday, Jan. 5-X-rays at 8:30; Contrast Enema immediately following that
-Thrusday, Jan. 6- Exam under Anesthesia t 6:30; Kidney Ultrasound at 1:00
-Friday, Jan. 7- We attend a lecture by her doctor at 8:00
Lab Work at 10:00
Urology cath. at 10:30
X-Ray at 12:45
More urology stuff at 1:00
Visit with the doctor at 1:30
-Based on our visit with the doctor, they will start trying different methods of "emptying" for the next week. Every morning she will have an x-ray to see what happened and they will adjust the formula we are using. We will visit with the doctor again on Friday the 14th before heading home.
Please keep us all in your prayers. Jia has a great fear of doctors. I will try to keep you all posted.
We are staying in a hotel until a room becomes available at the Ronald McDonald House which is just across the street from the hospital. Jia will be an outpatient the entire time we are here so the proximity will be nice.
Here is our itinerary
-Tuesday, Jan. 4- MRI under sedation at 11:00
-Wednesday, Jan. 5-X-rays at 8:30; Contrast Enema immediately following that
-Thrusday, Jan. 6- Exam under Anesthesia t 6:30; Kidney Ultrasound at 1:00
-Friday, Jan. 7- We attend a lecture by her doctor at 8:00
Lab Work at 10:00
Urology cath. at 10:30
X-Ray at 12:45
More urology stuff at 1:00
Visit with the doctor at 1:30
-Based on our visit with the doctor, they will start trying different methods of "emptying" for the next week. Every morning she will have an x-ray to see what happened and they will adjust the formula we are using. We will visit with the doctor again on Friday the 14th before heading home.
Please keep us all in your prayers. Jia has a great fear of doctors. I will try to keep you all posted.
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