Posts filed under 'onh'
We are continuing to be encouraged by Hallie’s improvements everyday.
Her vision has definitely improved and it seems like she is getting better at functionally using her vision. As some of you know, she has a “sweet spot.” This is her peripheral vision of her left eye. To look at something directly in front of her, she turns her head completely to the right. (see pics below)
Hallie loves to talk about colors and label different objects on what color she thinks they are. Her music therapist, Miss Amanda, quizzed Hallie on her colors by picking one out of two colored transparencies with light behind it. Hallie got 13 out of 15 right!! Recently at Hallie’s ophthalmologist appointment, her doctor compared her optic nerve photos before and after China. He said that her nerve in her left eye is larger than before and a slightly healthier color.
Another blessing that has resulted from the stem cell treatments, has been her growth hormone levels. Just to reiterate, part of Hallie’s condition is some pituatary gland hormone deficiencies. Before the stem cells, Hallie would have a growth hormone injection six days a week. Since the SCT we have decreased her injections while she is still improving on the growth chart. She is so tall now!!! Her bloodwork also shows that she has “normal” levels, even with the decreased injections .
We also want to take this opportunity to thank all of the people that continue to support us. There are so many people out there that are steadfast in asking for updates and praying for us. This means more to us than you will ever know!
God Bless,
Adam Kemp
Easter 2010
Notice how Hallie's head is tilted to put her tone block in her peripheral vision on her left side.
Playing "Alaphababy" on the computer. Again her head is turned. The screen is white and as she presses buttons, colors and lights pop up with a voice labeling the images. This is such a great game for little ones!
Hallie and Zach playing Alaphababy. Again, an example of Hallie intentionally turning her head to find her sweet spot. This is a new thing since stem cells.
May 21st, 2010
Hallie noticed the light from the fireplace.
Such a sweet heart!
"Elmo" watching Elmo on the computer. Notice how she's intentionally holding her head to see the screen peripherally.
Again, watching Elmo.
Hallie looking at a Mr. Llama
"Hello pretty girl in the mirror."
Last week Hallie had a three month post China opthamologist appointment. Dr. Robert King is her doc here in Denver. He works closely with her teachers at the Anchor Center (a preschool for the blind). There is an exam room right in this amazing school. Her vision teacher JC (25+ yrs of experience) and I met with Dr. King for Hallie’s exams. We are so blessed to have such an amazing team following Hallie.
Dr. King was hesitant to be overly excited about the results. He said that there was no improvement in her central vision, and so she remains at 20/1000. BUT her visual field has improved. This is consistant with what we’ve observed in her. When Hallie is “looking at” something her eyes look striaght ahead, and she is seeing things directly on the side of her head. (see pics above for examples.) Dr. King also said there was a slight change in the color of her optic nerve (more pink- like there was more blood going to the area). Again, he said that he didn’t want to be too optimistic. So we will continue to wait.
Our expectations going into this treatment and the outcome were that we’d love ANY improvement. We have seen that and will continue to pray for more. Hallie continues to talk about colors and lights all the time. She reaches an arms length away to feel the window when light is coming in, and asks to “look out the window” all the time. A few weeks ago I put a new lamp in our living room and Hallie noticed it. She was reaching up along the wall and said, “See that shiny mirror?” Hallie holds mirrors up to the side of her head to look at them peripherally all the time. She has identified objects visually (not consistently yet) but she has labled two different puppets, glow light up toys, a shiny pinwheel, a pink zebra pillow, a hand held mirror. She can identify these objects, but there is a lot of “coaching” to talk her into using her vision. She has to be in a state of concentration, and I tell her I want her to find something with her eyes first, then grab it or tell me what it is. It takes a lot of effort on her part. BUT we have not given up yet. She’s only had 3 months for these stem cells to work, and they will continue to do so for over a year more. SO we are hopeful and waiting. And even if she doesn’t gain any more vision, she can learn to use the amount she has so that she can navigate her world easier. (This sounds like a small thing, but can make a world of difference for a visually impaired person.)
Hope that Hallie would gain vision is the obvious reason for traveling all the way across the world for this procedure. But we have seen improvements in the not-so-obvious areas as well. We are thrilled with all of the unexpected gains she’s made developmentally. She has SO much more confidence in her exploring. She initiates exploring new places and walking around on her own (before she would be fine just sitting on the floor and rocking or would explore only if we motivated her to do so.) Her posture is much better, she has more physical stamina and she holds her head up like a sighted person. The last, and probably best improvement she’s experienced is the ability to self calm. This may sound like not that big of a deal, but she used to have a REALLY hard time in new/loud/chaotic places. Even at school she barely made it through a 1/2 hr session w/o needing a break in a cuddle swing or something else to help calm her. ALL of Hallie’s teachers can’t believe how much more “regulated” she is with her emotional/neurological self. They have said that that improvement alone is worth our efforts to China… b/c now Hallie has a much better opportunity to learn.
So with all of that being said, thank you again to everyone who has been praying for our sweet Hallie.. (who now likes to be called “Elmo” btw) We will continue to be hopeful for the next months… God is not done with His work in her…
To be continued…
Katie
February 5th, 2010
We made it home safe and sound. For the first few days my kids had perma-grins as they reunited with their old toys, books & surroundings.
Many people have asked how Hallie is doing since we’ve been home, so I thought we’d keep going with the blogs. Adam and I just had a long talk last night about what we think is different with her. This process of noticing the difference in a persons vision post stem cell therapy was described to us by an adult that had the treatment herself. She said the improvements are kind of like when you have been wearing glasses that were one prescription less than what you should have been wearing and then right when you put on your new glasses you see in a new & clearer way. You notice the slight change at first, but ten it becomes the norm. Well, that’s what we’ve noticed with Hallie. Slight changes that are becoming the norm.
There are three things we have noticed:
1. Hallie doesn’t walk into as many walls. Before stem cells Hallie would hardly ever notice a wall, table, or large object in front of her. She would walk straight into them and bump her head all the time. We started to notice in China that she would put her hand up a foot or two away from an approaching wall. Since we’ve been home she has continued to do the same thing. She gets close to the wall and turns her head with her left side facing the wall and puts her hand up. She’s still will bump into things but it just seems like she is navigating around much faster and more confidently.
2. Her eyes are more open and wander less. Hallie’s eyes have always wandered and have not always moved together. She also used to hold her eyes as if she was looking down with her eyes closed. We have noticed, as well as other people, that Hallie’s eyes move in sync with each other and are open wide more often.
3. Hallie is interested in colors and holds lighted toys to her eyes. Before SCT I would drill Hallie with colors and would talk about what things look like ALL the time. So the way I talk to her about her surroundings now is not much different after the treatmet. The thing that’s different is that she is interested and continues to talk about what we’ve described. She’ll repeat, “That chair is blue,” or “That’s a red balloon.” The other point is that before SCs Hallie would occasionally hold lighted toys up to her eyes. We would usually have to verbally prompt her for her to be interested. Now, post treatment Hallie discovers lighted toys on her own.
Thank you for reading and for your interest in our daughters improvements. It encourages us when other people notice changes in her, so don’t hesitate to leave a comment!
Love,
Katie
November 9th, 2009
I can only say that our stay here has gone much faster than anticipated. As our friends from the UK would say, “It’s been a lovely time.” We have loved meeting all the families from around the world and hearing their stories. We will miss hanging out in the common area of the VIP Ward. We will miss the amazing staff of Beike, the nurses, translators, drivers, doctors, etc. We will miss all the free time we have had as a family. We will miss the experiences we’ve had, but mostly we will miss the dear people we connected with here. This has been a once in a life time experience and we thank God that we’ve gotten to do it.
Thank you to all the people back home who have been faithfully following our adventure. We really feel very supported through your comments of encouragement. You are the reason we want to come home. (And because we are getting sick of the food. Adam is going crazy from not having any outlets like basketball and we can’t handle the smell of the water any longer). Truly though, THANK YOU.
Lastly, why we came… We came for a chance to give our daughter Hallie more vision. We came without expecting Hallie to have results right away. During our stay here there have been two people with ONH (Shannon, 40 and Lilli, 
both had improvements while they were here. They were also older and able to voice what those improvements were. They both took a VEP test that measures how much light is going from the optic nerve to the brain. Again, both had significant improvements while they were here. We had a VEP test done with Hallie before we came and will do another 6 months post op. (It’s harder to do with little ones that don’t sit still 
The small improvements that we see in Hallie will probably not be very noticeable to anyone that doesn’t know Hallie personally. But we are still hanging in the balance of hope and patience. Most ONH patients don’t see significant results until 3-6 months down the road, and then even up to 18 mo. post op have others seen more improvements. So this next year will be one filled with anticipation as we wait and learn what Hallie will see with her eyes. Adam and I came here knowing that we had to offer Hallie this opportunity. We have done that, and feel so confident that this was exactly the path God had planned for us. Whether or not there will be any HUGE changes in Hallie, we know that God has this little girl in the palm of his hands and will do amazing things through her life.
Colorado or bust!
love, Katie & co.
This is Carter's idea of helping pack. First, climb into the suitcase without my diaper on and pee inside it. Second, get my diaper on and continue to climb back into the suitcase every time my dad takes me out. Thank you to the Hulseys for letting us borrow the suitcase.
October 31st, 2009
Friday was another eventful day for us. We hired a driver that was a friend of one of the drivers here and it was just weird to have a man we didn’t know take us downtown. First, we were planning to go to this one art store to check out some of the calligraphy pieces that are famous here. But when we got there, we found out that is was an entire street of stores that sold traditional artwork, jade stone sculptures, and even big boulders. Katie and I have coined this “The Art District.” Needless to say, Katie was in absolute heaven. She could have spent an entire week going up and down the street, but I was really proud of her for holding back and staying on task. Next, we went to McDonald’s for lunch. The kids love the little play area there and we like having the American food. Lastly, and most important we went to Polar Ocean World. Carter and Hallie could not get enough. The animals, which included dolphins, turtles, sharks, etc., were amazing and would come right up to the glass. Carter insisted on yelling at the animals like they could understand what he was saying.
Saturday, was a pure packing day. When you are packing eight suitcases, a carry-on bag, and a backpack, you need all day to get it done. Here it is 8:11pm on Saturday and we still have some packing to do on Sunday.
Sunday, we are planning to have another prayer breakfast/church service. Alice, one of the translators who is also a Christian, is going to come and answer questions we have on the Christian culture in China. It will be wonderful to have an in depth conversation with her to get an insight into what it means to be a Christian in China. Besides this, we will be finishing some packing and preparing ourselves for the 18-hour trip back to America. The trip back is actually six hours less than the trip here, so that’s good. We are praying that everything will go as well as it did on the trip here, all things considered. Our kids were easier to take care of than we thought and the time actually seemed to pass as quickly as 24 hours of traveling can. So here is hoping for the same results tomorrow!
With love and God Bless,
Adam
Just saying hello to the little boy who is yelling at me in excitement.
Hallie and Carter checking out the sharks.
I took this photo of myself while getting eaten by Jaws!
We even went to a dolphin show!
Hallie with her mama
Hallie hanging out by the fish. We didn't notice her putting her face up to the glass as much, because it was pretty dark in there.
Another attempt at a family pic.
October 31st, 2009
First off, I would like to apologize for our inability to make this a daily blog. That being said, here is an update on the past five days:
Friday, was Hallie’s fifth stem cell treatment. My beautiful daughter and I are becoming really good at this whole process. Here it is. The nurses come in and it doesn’t take Hallie long to realize what is happening, the crying and body throwing commences. I proceed to lay on Hallie while holding her shoulders down with both of my hands. And when I say lay, I mean use most of my 230 lbs. in body weight to settle “The Fish Out of Water” thrusting. As you heard before, she refuses to calm down while she is getting poked. Therefore, I let her cry and continue to try to wiggle out of my grasp. After the IV is put in, I play a movie, give her the audio recorder filled with clips that she loves, or let her play with one of her favorite toys. It takes her a couple minutes to completely calm down, then I usually don’t even have to touch her and she will stay still for the rest of the 30-45 minute treatment.
On Saturday, we took the kids swimming in the morning and went to a souvenir shop in the afternoon. Besides that, it was another lounge day.
Sunday was a very big and inspiring day for us. About two weeks ago, Katie and I were praying about asking God to have a Christian family come to the hospital. A week later the Broadhursts arrived. We quickly started to get to know Jennifer (the patient with a spinal cord injury) and her sister Becky. It did not take long for us to figure out each other’s faith in God. So Saturday night, Jennifer and the Kemps organized a prayer breakfast/church service in the common area for all the stem cell patients. Katie and Jennifer put together a lesson on prayer and produced flyers, and I got the food and handed out the flyers. The next morning, six families out of estimated 11 english-speaking families showed up! We did some quick introductions, heard Jennifer’s prayer lesson, played some music, and Katie and I shared some scripture. During this whole time, you could tell people were walking by listening and wondering what was going on. It was very encouraging to fellowship with these six families, one of which are not even church goers. To bring God to the forefront of this hospital was an amazing opportunity and experience for Katie and I. I am sure Katie will have more to add to this, but maybe not.
After our prayer breakfast, we hired a driver and went downtown. Our first stop was Mary’s Market, the American import grocery store, for one last comfort food purchasing. Next, we went to “The Diner,” which was American food restaurant. This food was not that great and was another example of the Chinese version of American food. After lunch, we realized that May 4th square was right by the diner. May 4th Square was were the sailing competition was held for the 2008 olympics. We made our way down, got mobbed by all the people wanting to see our kids, took some pictures, and headed back to the car. Our last stop was the Ge-Mo market. This is another huge market were you can by pretty much anything you want to. I like these market because you barter. After all this, we were completely spent, but were happy that we had such a fulfilling day.
Monday we…, we…. What did we do? It is Tuesday night when I am writing this and Katie and I could not remember what we did yesterday. So that is just a testament to how scatter brained and busy we are doing this whole China thing with our two kids.
On Tuesday, I went to a different souvenir store, by myself. My amazing wife gave the kids a bath, so I could have some “no kid” time. I love her. After that, we went to the park that has become infamous in this blog. We rented another paddle boat and then the kids got ride these two little mechanical cars. On our way back to the hospital, we stopped by the mall to do a little more souvenir shopping.
So, there you are. You are now updated on what we have been doing the past 5 days. Except for Monday of course.
Wednesday is Hallie’s sixth and final stem cell treatment!
Adam
P.S. We will return to the good ole’ U.S. of A. on Sunday.
Fish at the supermarket- seafood is huge here.
Here is one of the 'VIP ward' cleaning ladies.. she's in love with Carter!
Outside Pizza Hut... A sign with lights.
Lit sign
Here is the loading into Charlie the driver's car.. for our day downtown.
May 4th Square- these are some ladies dressed up for a dancing show.. Hallie loved feeling their dresses. She kept saying to them, "You're bea-tiful!"
This is at Ge-Mo. Hallie started playing and soon after a small audience formed to watch this blonde beauty preform!
Carter helping push the water jug.
Carter loves getting his temperature taken. Every time he's by the nurse's station he point to his ear in anticipation!
On the boat ride again.. Carter's sleepy.
Attempt at a family pic!
The kids went on these rides 4x! They are missing parks back home.
October 27th, 2009
I wrote a previous blog about how I thought Hallie could see fish in the aquarium at Lotte Mart. I video taped her that day and as I reviewed the clips I noticed her eyes really have changed from the treatments. They move together and hold their gaze toward the fish. On our website we added two videos. On the second one, Hallie was walking along the tanks and she paused, put her face up to the glass and said, “It’s blue.” and after, “I see with my eyes, it’s blue!” I know this seems like something small, but we are so encouraged b/c I know pre-stem cells she would not have paid as much attention to the tanks (except maybe noticing the lights and then would have gotten bored). We hung out looking at the fish for about 20 minutes. I wish I could upload the video on this blog, but it the file was too big, SO:
Go to our website, www.hopeforhallie.com for the videos. Click on the link “Ni-Hao China” on the left.
Enjoy,
Katie
October 26th, 2009
Today is Friday already, and we don’t know where the week went! On Monday Hallie had her 4th treatment. She had to be poked twice, bur other than that all went smoothly. There have been subtle changes that are really hard to explain, but that we have noticed. She says the phrase, “See with my eyes,” more often than before we came. Today I took Hallie to the Lotte Mart (kind of like Wal-mart) and we went to look at the fish. Hallie stood at the fish tanks and put her eyes right up next to the glass and talked about seeing with her eyes. Obviously it’s hard to know WHAT she is seeing, but she is noticing something. The fish were bright orange and the tank was lit up, so it’s very likely that she WAS seeing.
So I will go through our week and tell you all about the adventures we had. Like I said, Monday was treatment day. Tuesday we went to the ‘outdoor market’ which was quite an experience! (see below) Hallie was a little fussy b/c of the immense smell and b/c she had to stay in the stroller the whole time we walked around (the ground was not the most cleanliest of places.) Wednesday we went shopping at the Mall that is across the street from the hospital and to the famous park we have talked about many times on here. Hallie loved discovering the statues this time; feeling the face, hands, hair, etc.
Playing discovery.
Amusement park in the Mall
Thursday was the best day! We went to the Yellow Sea shore. The view was exquisite. The drive along the water was beautiful with the fall trees changing colors. I’m so glad I didn’t miss fall! Ginko trees that are everywhere are turning yellow and there are a few other trees changing to reds and oranges. We made our way down to the beach where we dug our toes in the sand and played in the water. Hallie & Carter loved getting dirty and wet. Carter raked the sand with his hands and managed to eat only one handful. Hallie LOVED the water and the waves made her giddy. She would walk into the sea and then her and Adam would anticipate the next tumbling wave together.. oh it made her come alive! It was a beautiful day, but not warm enough for swimsuits so we just waded in the water. After getting cleaned off we went downtown to Qingdao and ate at McDonalds (which was an American treat for sure!) Adam went to a 3 story electronic store where he died and went to electronic heaven. He got Wii games for less than a dollar and some gifts for PSP players. ( I will get pictures from the beach uploaded later..)
But for now, here are some pictures from everyday life… enjoy!
Carter, Hallie & friend Lilli
Jaoquim- beautiful boy!
Hallie and Jasmine (her massage therapist). Hallie is trying on a headband for electrowave therapy... which she hasn't done yet. But the headband is the 1st step of the process
Carter, the next Dr. Tony
Street vendor making squid & vegetable stir fry
Handsome Husband
Our kids, playing under the table... it's one of Hallie's favorite hang out spots.
"Special Red Blankie" is taken everywhere we go.. thank you Grandma Mary!
Goodbye for now.
Katie
October 23rd, 2009
Hello! How are you? this may be a greeting that we use in America. Here the translation is “Hello, have you had lunch?”
For the last 20 days we’ve been living in a completely different culture. We’re dedicating this blog to inform you all about what we’ve experienced in this new world (while still being respectful to their culture).
First, everyone here is very kind and warmhearted. All the staff- from nurses to drivers, even doctors play with our kids. Family is huge here, as is respect. Women dress very modestly and everyone is a healthy looking thin (I’ve seen maybe 2 overweight people total). They walk or bike everywhere!
The food is probably the most notable shock factor. We went to the ‘outdoor market’ two days ago. Lining the sidewalk are people selling anything from dried seafood to cooked dog heads. There was a cage of chickens and ducks that buyers pick out right there, they chop its head off, and take it home for dinner that night. The smell is indescribable… especially in the seafood section. Everything is layed out in the open where bugs and flies can linger. There are all kinds of fish, octopus, squid, clams, eels, catfish, bottom sucker fish (i don’t know what they’re called) and many other tentacle type seafood that is scary. At the supermarket there is a huge aquarium where you can pick out the live fish you want to buy (not as a pet, but as lunch.) All the meat is laid bare and out in the open on ice, where it is self serve. Even though they eat EVERYTHING from chicken feet to rodent testicles, they do eat a ton of fresh produce. Street vendors sell roasted tomatoes on a stick and sweet potatoes instead of the hotdog stands you see in america. So very little is processed here. One more thing I love.. the tea is amazing and so fresh! At the market they sell huge barrels of tea leaves and dried flowers/herbs so you can create your own blend. So cool!
One thing that I have appreciated in this Eastern culture is talking to the doctors. Their mindset is much different than in the West. They look at the whole body rather than just the symptom. We have experienced stomach sickness and the kids have had a cold the last few days. The doctors prescribed herbs from the pharmacy and gave us a lot of practical advise like having the kids breath fresh air in the morning sunshine to specific food to eat. They also have been very encouraging about Hallie. A team of doctors or her main doctor visits her everyday to answer questions and examine her. A few times Dr. Tony (her main dr.) has noticed her pupils dilating. They are still sluggish, but the other day I even noticed them dilate a little. The room was dark when he shined the light in her eyes, but it was exciting for me b/c I’ve never seen Hallie’s pupils dilate.
Back to the culture shock. We learned very early on that it is not rude to stare here. We are glared down and pointed at everywhere we go. Sometimes its hard to push the stroller if a crowd has formed around our celebrity kids. Other pre-potty trained kids here don’t wear diapers.. (i think to cut down on waste). They have little slits in their pants and go anywhere that is convenient (even the grocery store floor, or the middle of the walk way). There are always janitors mopping the floors, so it doesnt’ stay on the floor for too long, but still!!!!!
Signing off for now, I have to get the kids in bed. Adam has been wrestling and entertaining now for some time.
love,
Katie
Seafood Market with a Wonderful Smell!
Chicken or Duck Tonight? Just order, they chop its head off, and you have really fresh chicken or duck at your table!
Lost in Translation. Don't drive your vehicle onto the park grounds!
October 22nd, 2009
On Friday:
We “hired” one of the drivers, Sam, that is employed by Beike (the stem cell company) to take us downtown since it was a free day. A free day is when Hallie has no treatments, acupressure, or doctors visits. The first thing we did downtown is go to “Mary’s Market,” which is an American import grocery store. We were craving actual American food, not the Chinese version of American food, so we went “hog wild” and bought enough groceries that I had to go to an ATM to get more cash. Next, we drove to a beautiful boardwalk that is along the ocean in this great area. We got the kids out of the stroller and let them play in the sand a little bit, where we even found seashells! Of course, during this whole time we had probably ten spectators watching our every move. It was a great day and the breeze from the ocean was so refreshing.
BEAUTIFUL!
Board walk
Playing in the sand
On Saturday:
We had lunch at the Food Court in the huge shopping mall that is right across the street from the hospital. We did some shopping and then made our way to the park. Carter slept about half of the time we were at the park so it was nice to have both parents focus on Hallie for awhile. All in all, Hallie rode the carousel 4 times, the airplane ride 3 times, and the train ride once. We had so much fun at the park that Katie got a little motion sick. After the park, we went to the Holiday Inn to rest. On our way in, we had to stop for the greeter girls to drool and kiss all over Carter once again.
Train ride
Airplane ride
The ladies man
On Sunday:
It was our day of rest. We had breakfast with Hallie’s friend Lili and her family at the Holiday Inn. They leave to go back home on Monday afternoon, so we had to have one last opportunity to hang out. We are sad to see them go, but we are already trying to plan a time we can get Hallie and Lili, the soul mates, back together again. We took the afternoon to lay around and do nothing, but we did take the kids swimming before dinner.
To see pictures, go to our website, www.hopeforhallie.com. Click on “Ni-Hao China” on the left and follow the links.
We have realized Hallie is noticing walls and tables that are in front of her more frequently. She still runs into some, but she usually puts her hand out right before she hits them now. Before we came, she very rarely would notice them enough to put her hand out.
Thanks again for the support and encouragement,
Adam and Katie
October 18th, 2009
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