Archive for July, 2009
A few hours ago Ella received her final stem cell treatment and the last of her therapy. Don said her therapy session was the best one ever and she also slept through much of her stem cell treatment. Don said she sucked up the stem cells faster than any of the other ones and they were done in no time.
Tomorrow will be a day of rest and packing as they prepare to head back home:) It has been an amazing time for our family and we cannot wait to have Don and Ella back with us on Thursday!!!! The kids and I are looking forward to decorating things up a bit with a welcome home sign and balloons…..hmmmm hope Don isn’t reading this!
Ella really was showing off for us over the weekend and we were really excited to see how strong she is getting. She would lay on her tummy and with both arms totally straight she would lift her torso and head up and hold it there. It was great and she did it several times. Don said she sat on the orange couches for 2 hrs. the other night byherself and was just so happy. She is really building more stamina and in such a different enviroment, I can’t wait to see what she will do once she gets in her own home again!
Don took us all on another tour of the hospital and introduced us to some of the new stem cell family members. Our little Ollie friends were here Saturday and Sunday along with my parents so Hazel and Maddie were quite excited to talk to Ella and Don. Poor Hazel, Don gave her such a hard time about doing her hair for her when he arrives back home. You see, Don has learned to do piggy tails in Ella’s hair and does a very good job so he is thinking of setting up shop here:) Just kidding Hazel! Everyone on the other end of the computer were so happy to see all the kids gathered around the computer to see all of them. The kids would get so excited when Don would introduce us to someone they would all say hello and the persons name so you can imagine how loud it got with 5 kiddos waving and shouting hello……I think we were probably heard all over the hospital. It was great fun though.
Yesterday, a very good friend of mine and Don’s stopped by so all of us adults cracked open some Qingdao brewed beer. Yep, I found one six pack at Hy-Vee so I just had to get it. It was super good and fun for us to try what Don has been talking about. It was a good weekend spent with my family and friends and in a sense celebrating Don and Ella’s arrival in a few days.
Please focus your prayers the next few days on Don and Ella’s travel home. We pray for a safe trip to Chicago to pick them up and a safe trip back home and for Don and Ella to have a good and safe flight home. I cannot wait to hold both of them in my arms again!!
This may be my last posting before they get home so I want to thank you again for your love and support. To those of you who have had the kids and I over to your homes, those who have stopped in to say Hi, the ones who have called or emailed please know how much it was all appreciated. I have some wonderful friends out there……..you know who you are:) THANKS!
Thanks for keeping up with our journey and I cannot wait to post more exciting news as the next few months go on:) I will be posting some new pics soon so be looking for those as well.
Lots of Love,
Tanya
July 28th, 2009
It was a joyous morning as I learned that Don and Ella had received the care packages that I had sent. They received them at 2:00 yesterday afternoon so I was thrilled with that news. Don had fun sharing some of the goodies with the other stem cell families. Pop tarts, pretzels and microwave popcorn along with some chicken noodle soup were passed out. Aaah the things we take for granted!
Don and Ella once again ventured out in the heat to the Lotte Mart. Daily supplies were in need……juice for Ella, beer for Don, baby wipes. I tell Don that this is a typical shopping trip for him anyway when he hits the stores. LOL He had another hamburger ( lettuce tomato onion) and fries from across the street, they are very good he says and he was craving a hamburger ( Don’s fave!) I am thinking I will have the grill fired up every night here when he gets back.
When we last spoke Ella had completed her morning therapy and was taking a snack break ( she is so happy to have pudding again!) and then it was off to have her daily massage.
Don played the Wii the other night with the families from Ireland. He said he beat the one little gal by 16 points…….do you think she was going easy on him? 
He has been taking lots of pictures again, it will be fun to get to work on Ella’s special scrapbook all about her journey to China.
The kids and I spent a wonderful day with friends in the Ollie and Richland area. There were three of us girls back in the neighborhood and we decided we were causing quite the commotion with all of us being home at once:) We were super excited to meet baby Brecken ( oh April what a sweetie!) and just have time to visit with all of you that we saw today. It gives me continued strength to have your support and to see your smiling faces:)
6 more days!!!!!!!!!!!!!!
Tanya
July 24th, 2009
Ella received stem cell treatment #5 a few hours ago and again everything went well. When Don and I last spoke she had finally called it a night a little after 10pm. They had gone to the commons area to visit with the Irish families who Don is really enjoying getting to know and she fell asleep.
Don had some real genuine chinese food yesterday for lunch from LA’s. It was hot and spicy beef rosita. He said it was very spicey and really good. It was white rice with beef and red peppers and a sauce on top with cheese. He still has not received the boxes I sent so am glad he is finding lots of good things to eat:) I have several people working on the matter so hopefully he will have the packages by the time he departs only to have to bring it all back with him…..how nice! This has been the only frustration through this whole journey so I guess we should not complain…..I am sure he will get them just not as quickly as we had hoped.
Don and Ella also had some KFC food. Don said it was pretty similar to here in the States. Ella had mashed potatoes and gravy and Don had spicey chicken legs and wings…..and yes they are small. I don’t think they super size anything:) Another thing we could learn from the chinese people!
A family from Maryland has arrived and the little gal is almost three and just like Ella. She has a VP Shunt like Ella, visually impaired and cannot speak or walk. So I look forward to getting to know them and continue to keep in contact with them about her progress. I pray that the stem cells work their magic for this little girl and all the other patients as well.
Ella continues to work hard in therapy. I believe she is a little sore from all the work as are a lot of the other kids. She showed off her sitting skills to the doctors yesterday as this is not something they work with her on in therapy so Don thought it was time they saw it for themselves. Don had to show the therapist how to get her to sit, apparently his way was not working and as a parent you just have to take control and show them. Don said she sat for a very long time on her own while he visited with the doctors, perhaps her longest time yet:)
I had the chance to say Hello to more nurses and cleaning staff the past few days. They are so very sweet and the kids get so excited when they see someone come in the room that they can talk to. I think the staff is just as excited to see us.
The countdown is on again only this time for Don and Ella to come home. It is hard to believe the mission is almost complete and we will be together again in just a few short days. Zoe has her Kindergarten physical the day Don and Ella head out of China and her and I will spend our special back to school day together after her appointment with lunch and shopping so I am hoping that will be a good distraction while they are in the air……probably not though. I can feel those butterflies starting to appear already as that worry sets in about the flight home.
Keep praying especially for a safe trip home! The kids and I are off to spend the day with the Dascher’s, the rain cancelled our plans for the park however I know the kids will make their own fun. So I will sign off for now.
Tanya
July 22nd, 2009
Don and Ella had a nice outing to Century Park over the weekend. It was a pretty good walk from the hospital, lots of parents pushing strollers! It is still hot there, unlike this cool July weather we are having here in Iowa. Don said there was a lot to see and that the whole group of stem cell families were a big spectacle in the park among the natives. They continue to swarm around all the little ones and talk to them. Some even try and take your child to hold them but Don is taking the “hands off my child” approach. You can look but don’t touch! I am sure this must be a bit frightening because Lord knows if someone did that here we would panic but that is apparently just their way. They are just very fascinated by Westerners.
Ella has developed a new little laugh which I shall call her “Revenge of the Nerds” laugh. Now for my younger followers (Hazel,etc..) I am sure you have no idea what on earth I am referring to so you will just have to wait and hear it for yourself. I was cracking up last night listening to her and apparently she has been a big hit down in the commons area with her entertaining new little skills:) She makes herself laugh this crazy little laugh and then throws her head back and just cracks up at herself! Don also says that she is now making funny little faces and she is very aware of what she is doing and again thinks she is very funny. (I think Blake is rubbing off on her!) So, just some more new little things going on with Ella. She continues to make her legs go like crazy when we tell her to run although her leg movement has always been very strong but I am noticing that she is really making them go on demand. She wants to please:)
Ella will get her next stem cell treatment on Wednesday so please say another little prayer for her that they take hold and do their magic. It will be such an exciting year as we watch those stem cells take over and see what they can do for Ella. It will be very important to keep Ella very healthy, fever free, lots of good/healthy food and tons of therapy over the course of the next year and of course beyond but while those stem cells are still maturing we need to be extra careful. I have already started shopping online for a bubble to house her in during cold and flu season! LOL
Thanks again for the continued words of support! I saw so many people in my hometown over the weekend and I loved talking to all of you. You offered so many kind words and it really meant a lot. Thank you!
I get overly excited when talking about Ella and stem cells but I can tell that you all care so much and really want to hear all about her journey. I am so proud of my brave little girl. She has been through so much in her short little life thus far than what most people experiance in a lifetime and yet she continues to smile that beautiful smile and warm our hearts.
Lots of Love to all of you!
Tanya
July 21st, 2009
Stem Cell Treatment #4 is complete and again everything went well. Ella gets her port put in while she is in her room then goes to the stem cell room for her cells along with the sodium chloride to help with the itching from the steroid that goes in ahead of the stem cells. Don said the last treatment took an hour and 40 min. because she gets an extra IV bag to help with that nasty itching. No fever once again so that means those cells get to do their thing and will continue to grow and help Ella in every way:) It is hard to believe that she only has two more treatments and then they will be on their way back home!
There was a birthday celebration for one of the moms last night so everyone enjoyed cake in the commons. Don said Ella really liked the cake! On Sunday Don and Ella are joining some others and making a trip to Century Park so that should be a good outing for them.
They don’t have the whole weekend off as Ella is having therapy on Saturday morning because she had Friday off. She better lavish those days off in China because I cannot wait to get my hands on her and start our therapy routine once she gets back home, so I don’t think she will be getting any full days off as the neurologist stresses the importance of lots and lots of therapy to help those stem cells continue to grow. As soon as she gets home ( the very next day) we are taking her to get re-fitted for her AFO’s as she has outgrown the current ones and they help her so much in standing that it is important we get new ones to continue on with her standing therapy.
So that is it for now. Until next time, have a great weekend!
Tanya
July 18th, 2009
I am a day behind on posting our latest “jump for joy” good news report so here goes……
Don Skyped me the other evening as he was awaiting the neurologist from downtown to arrive. I was able to listen in as he examined Ella with his team in tow. Again, wonderful people and just so very sweet. I love how they all wave and smile at me and say hello. I feel so much a part of everything even though I am 6000 miles away!
After examining Ella the doc concluded that she is getting stronger and that her muscle tone is getting better!!! Yippee! He believes with continued therapy both while they remain in China and when she returns home, those stem cells will just keep doing their thing and she will continue to make progress:) Again, just more awesome news for us to celebrate and Ella has three more stem cell treatments to go!
Don and Ella went with a group of the stem cell family members for a walk to the lighted park the night before. He said Ella did wonderful and was very good the whole time. The lighted things were getting torn down but he said he did get some pictures of the outing.
Don also had his first cheeseburger and fries courtesy of the Louisiana girls:) They were at the Lotte Mart and picked it up for him….thanks you guys! I just think it is fabulous how everyone helps each other out. I know how good it makes me feel here at home knowing Don and Ella have all the other families to lean on so I can only imagine the feeling it gives those that are actually there going through this together.
We are a little over half way through on our journey…..it is going by rather quickly. Of course it does help that we video call three times a day:)
Thanks for the continued prayers,
Tanya
July 17th, 2009
Ella had her third stem cell treatment on Monday. Once again, she got through it with flying colors. I am so proud of my brave little girl. I can only imagine what an adjustment this has all been for her and she is really handling it well. Of course it really helps that everyone is so nice and talks so sweet to her.
I “met” two of the doctors on a Skype call the other night. They happened to come into the room before her stem cell treatment and visit with Don about any changes he had noticed.They were so nice and said Hello to me and waved. Don and I have talked about it several times and are in agreement that the treatment from hospital personel in Qingdao is by far better than what we get here. They want to do everything to make your child comfortable and happy. It seems like they really take the time, it is not so rushed like everything here. And, I can guarantee if Don would have put a computer in the faces of a neurologist at UIHC they would not have been friendly about it. I wonder if we can convince the neurologist in China to take a job in Iowa City?!? I expect Don and Ella both will miss this treatment once they return home and we have to go back to how things are done here.
Don and Ella continue to enjoy visiting with the other families. They have met some people from Ireland. If only those orange couches could talk……..the stories they would tell:) They continue to only venture over to the Lotte Mart, Don just doesn’t want to chance Ella catching something. One kiddo ended up with a stomach virus and was put on bed rest for two days and another with an ear infection. We are always pretty cautious with Ella even here in the States and Don especially does not want her getting sick while they are gone. Like Don keeps saying, he is there to get those stem cells for Ella and that is the goal. We will explore China together on the travel channel:) ha
A grand opening was held for the new KFC across the street. If you checked out the new pics you will see this. Don said they shot off fireworks in celebration of it. We have heard fireworks twice while talking to him and Ella and once were able to see them even though it was morning.
I have lots of great pictures of the families that Don and Ella are spending time with. I love hearing from them via email or posts they make to our blog. I just feel like I really know them as well and look forward to staying in touch with all of them. The newest member of the stem cell family is a mother and her daughter from Wisconsin. Don said the little gal is very much like Ella and it is nice to speak with her mother. There is a certain comfort you find within yourself when you find a parent of a special needs child that knows what you go through on a daily basis.
Don reports that everyone there has seen some results from the stem cell treatments which is just so exciting. I am waiting on that phone call from Don where he tells us that Ella has done something HUGE but I am very thankful for the little changes that have occured. We have talked about the fact that those stem cells could be doing awesome things as we speak, we just don’t see all the wonder they are doing just yet. Don did say that Ella rubs her eyes a lot and I have noticed this when talking to them and a lot of the older kids who are there for treatment for vision say their eyes itch like crazy, but this is a good thing. So perhaps this is happening to Ella, she just can’t say. She continues to make new sounds and does this sweet little singing. The one la-la-la she does, Zoe is super excited about because it goes along to a New Kids on the Block song…..what can I say my girl’s have great taste:) So, little changes turn into big changes and we have faith that those cells are taking over and performing their magic, our magic just may take until Ella gets home to be seen.
So some of you have been wondering what the kids and I are up to these days besides talking to Don and Ella on Skype:) Well, the kids keep me busy with their social lives! Blake had a friend invite him to one of the local fairs last week so the girls and I went along with them and had a good time. Today, Zoe has a friend coming over and on Saturday she has a birthday party to go to. She is very excited about all this. On the weekends, Ollie Gpa&Gma visit and provide lots of entertainment. The kids love swimming with Grandpa and love having him build a fire at night for marshmallows. His fire building skills are a bit better than mine so it takes him no time to get one going and for it to stay lit…..I am still mastering this:) We will get together with our wonderful friends the Moeller’s on Wednesday and we are really looking forward to that. Most days are spent here at home, swimming and just playing. For those of you who have called,emailed or stopped by we appreciate it so much. I apologize for not returning all the emails, my focus is on the blog so that is about all I get done as far as computer time. Please know that I do read each and every one of them though:) For those of you who have said to tell Don and Ella Hello, I make sure to do this each evening when we talk. Our friends who have been with us and given us unconditional support throughout this process we will never forget what you have done for us. When lots of people were skeptical or didn’t think Don and Ella should go alone ( see Don has already met other families who chose the same path:) you were the ones who never judged or criticized us…..you just gave us your friendship and complete and total support for what we had chosen for our family. THANK YOU!!!! You are true friends!
It will be a total therapy day tomorrow and stem cell again on Friday…..keep saying those prayers!
Tanya
July 15th, 2009
Everything continues to go well for Ella and Don in China. Ella is getting more settled in with her therapy rountine and is doing well with it. She continues to use the stander twice a day, even though it is very different from her stander here at home she is getting use to it now. She gets worked hard in therapy which is great!
Don is seeing more little changes or blessings as I am calling them with Ella. He is noticing that her pupils are enlarged for good portions of the day. Ella’s pupils have always been very tiny and with the second stem cell treatment he is seeing that this has changed. Not sure what this could mean, but am excited that it is yet another little difference:)
Don enjoyed his first Qingdao beer last night. In celebration of it being Friday night he went to the hospital store and bought a Qingdao bottle of beer. He said it was a 20 ounce bottle that cost him less than 50 cents in US currency. How crazy is that?! And how funny that you can purchase beer within the hospital…..now why have we American’s not thought of that one??? He said it tasted very similar to Busch Light, he really liked it.
Today is Saturday there already so when we last video called Ella had just finished her breakfast and she was getting ready for her bath. They were then going to go to the Lotte Mart and try to find some nail clippers ( I forgot to pack that item) among other things. Don has been able to find Gatorade there and a good brand of juice for Ella. After that he thought they may check out the couple of parks that are close by. One is lit up just beautifully at night, it reminds me of Disney’s It’s A Small World or something along the lines of what you would see in Holland perhaps??? I told him to make sure he took the camera along to get more pics for me:) He holds the laptop up to the window most days so we can see what is going on outside their window and check out the weather.
So today and tomorrow are their days off so they will just do some relaxing and meet with some of the newbies that have moved into the ward:) I look forward to hearing all about the new families.
Don is still awaiting the arrival of our care boxes. They are held up in customs but hopefully today they will get them. Fedex called me yesterday for another number to call the hospital and they faxed them a list of what I had sent. The translator had to take it to Don and have him explain what the items were and then she had to write it down in Chinese and fax back to them. They have no idea what Pop Tarts, Breakfast bars/granola bars, anything like that is so they actually had not torn into the boxes they just didn’t understand what I had put on the list and needed assistance. Hopefully all is well now and they will be enjoying their goodies very soon:)
Don really does like the pizza there and is on his third variety of it. The last he tried was BBQ Chicken and he said it was really good. I hear they have hamburgers next door at a little place in the Lotte Mart so maybe he can grab one of those too.
Until Next Post,
Tanya
July 11th, 2009
After only one stem cell treatment, the docs are saying Ella is doing fantastic and they say she is improving!!!!! WOW! Don said when the team last came in to evaluate Ella the head Neurologist said they are noticing changes in her Hypertonia ( this is what causes Ella to have tightness in her limbs). I am so excited at this noticable change that the doctors are seeing because I strongly believe if her Hypertonia is helped it can only mean bigger and better things for Ella in her ability to improve her motor skills:) Only time will tell.
She received her second dose of stem cells yesterday at 4pm and all went well again. When Don called this morning ( bedtime for them) she was resting peacefully. The only thing that the parents are all reporting on is the kids are experiancing an itching sensation when the stem cells first start flowing into the kids system and this is due to a med they put in ahead of time to open up the veins to allow the stem cells to move through better. So the first 10 minutes Ella doesn’t like it but after that she is good.
She gets her temp taken every 4 hrs. each and every day so they really want to make sure all is well. Don even gets his checked! We watched her get her temp taken yesterday while we were on Skype. Speaking of watching things…..Don took the kids and I on a tour of the hospital last night before we went to bed. It was awesome! It was daytime their of course so everything was very bright and clear. We “met” lots of the family members as they sat in the common area and said hello to everyone from the translators and nurses to the cleaning lady who was cleaning Don and Ella’s room. Blake was on a mission to meet Kyle who we have kept up with on his website but Don couldn’t hunt him down so maybe next time:) They just hooked up a Wii there so Blake thinks him and Kyle need to talk Wii for awhile:) Blake even used the Chinese word for Hello which is Ne haw ( pronounced Knee -how) and much to his suprise the lady said Hello and not Ne haw back to him, he was confused. We had a good chuckle over that!! Everyone was so sweet and it just seemed so funny to be waving and saying hello to everyone all the way in China. Ya know, one thing I just cannot figure out……how is it I can see my husband and daughter perfectly clear via Skype all the way in China from Iowa yet since this ridiculous switch over to digital tv I rarely have clear tv????? Bizzare isn’t it? Who can I talk to about this! HA
Ella will be back on her therapy schedule today. Pt, stander, massage, lunch break and stander again in the afternoon. She has not taken any naps the past few days so sleeps all night long.
I continue to hear all about the wonderful families who keep Don and Ella company when we are not chatting together. We are going to have wonderful new friends from all over, how exciting. So far Don and Ella have only gone to the Lotte Mart. Don said a lot of people have had problems with their allergies so they don’t venture out much either, others just run to the Lotte Mart and get what they need and come back so they always have someone to visit with throughout the day. I am hoping Don and Ella take a day and go to the beach, I have heard good things about it and maybe the air would be good for them. They always have someone they can travel with as far as some of the other families so maybe they will do that sometime.
Their packages should be delivered to them tonight so it will be a fiesta! Maybe all the families can get together and have a junk food feast to go along with their Budweiser:)
Tanya
July 9th, 2009
Things continue to go very well for Don and Ella in China. Don has customized Ella’s therapy to his liking and Ella is warming up to PT Tom more:) She does PT each morning and then uses the stander each afternoon. Don has discontinued EWT at least for now and has switched to Chinese Massage which Ella really likes. By the time all her therapy is done in the morning it is lunch time and then it is back at it by afternoon.
The rest of the day is usually spent in the common area visiting with the other families. I really enjoying hearing all about them when I talk with Don and he took some pictures of all of them so it is nice to see everyone he speaks of. We look forward to staying in touch with these families even after the China experiance is over.
Don took Ella shoe shopping and bought her the cutest little pair of Nike tennis shoes. She was wearing them yesterday when we did a video call. When we told her we loved her new shoes, she smiled big and started kicking her feet as if to show them off. Don said it was very interesting trying to tell the people at the store what size he needed. After a few attempts they figured it out:) I told him if he can go shoe shopping for Ella in China without a translator then he can do anything!! PT Tom was very impressed with her new shoes and they will work out great for her in the stander.
Yesterday we enjoyed a video call while Ella ate breakfast. She gobbled her oatmeal down and loved having the kids sing and talk to her. I am so thankful to have Skype as we use it at least twice a day and is just our life line right now. We use it for video and regular phone calls. It works great! The doctors came in to evaluate Ella while we were chatting and Don reported later that everything checked out just fine so she is ready for Stem Cell Treatment #2 tomorrow!!!! YEA! More “Smart Cells” ( I borrowed your phrase Katie C.-I love it!)
Don and Ella also attended a prayer service on Sunday morning with the other US families. It was a way to share your stories about your journey to China and really just offer and show support for each other. I thought it was just wonderful. I know that I have said it before, however I really cannot say enough how thankful I am that everyone is there supporting and looking out for one another.
I got the boxes of goodies shipped over yesterday so Don and Ella should have it by Thursday as long as there is not a delay in customs. I believe it will be Christmas in July when those boxes arrive at the hospital:)
Thanks for keeping our family in your prayers!
Until next time,
Tanya
July 8th, 2009
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