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We accomplished what we set out to do! We got Ella through the winter HEALTHY! This is the first winter in 3 years that Ella has not been terribly sick and/or hospitialized for an illness. We give the stem cells full credit for helping to boost Ella’s immune system. Ella has also been able to maintain her weight and even gain a couple of pounds throughout the winter! Again another first for Ella during the winter months! Thank you God! Also, no seizure activity. Yet another blessing.
We kept Ella pretty much in her little bubble aka our home during the winter venturing out only for her doctors appointments. The older kids practiced very good hand washing skills and changing out of their school clothes as soon as they returned home from school each day as to not bring home any nasty germs to their sister. We recently took a road trip to the Des Moines area and attended an art show(locally) where Blake and Zoe each had art work on display and Ella was such a happy and good little girl for us during both outings. It was nice to once again take in some activities as a family-not just doctor appointments.
Ella continues doing all of the things she had learned to do upon her arrival back home from receiving the stem cells. Her strenghth is still incredible and her hypertonia is gone. Not just toned down but all together gone. Her doctors are amazed by this change and how it has only become more and more noticable at every appointment. She chatters non stop and we just love this so much. A friend of mine was visiting this week and Ella turned to Tiffany and said,” I’m Ella!” really loud and smiled big. It was too cute and you could tell she was very proud of herself for letting herself be heard!
We will continue on with therapy probably after next month as Ella has a lot of checkups in April so will be busy with that.
A lot of people have been asking if we will go back to China for more stem cells. We cannot express enough what a pleasant experience this was for both Don and Ella. They were treated with every ounce of kindness that you can imagine and we know those stem cells have continued working their wonder in Ella however we are currently planning our summer vacation here in the States this year:) We look forward to some time all together and are checking into a couple of places that we are excited to spend time at.
Hello to all of the stem cell family! I love hearing from all of you and remember the offer stands for all of you to come to Iowa this summer!! We would have a blast!
Our Beike friend, Luca phoned us over the weekend. We appreciate him taking time to keep in contact and stay in touch with our family, it is always a joy.
Thank you all for your continued well wishes and prayers for our family especially Ella. Lots of Love! Tanya
March 25th, 2010
I am so behind once again on updating what little miss Ella has been up to! With the holiday season in full swing baking, shopping and wrapping gifts has consumed me:) We know it will be an awesome Christmas as we just are so happy with what Ella’s outcome from the stem cell tratment has been. We rejoice each day that the treatment was a success and that her and her wonderful daddy made it back home safe and sound to us. That is the best Christmas gift any of us could receive.
Ella’s new goal in therapy ( the goals are coming quickly as she keeps reaching them right away) was to stand up by the matted table that Andy works with her on using her hands to feel the support but to eventually learn it was OK to do this on her own and not need one of us behind her supporting her pelvis. Well she DID it!!! I have some great photos which I sent out to the stem cell family and by the way you guys made me cry by all of the wonderful and supportive emails you sent in response. (By the way…..is anyone thinking towards summer for a reunion????) Ella got very brave and took one hand off the sofa to play with a toy the other day so this is wonderful news. Her balance and strength is incredible, she wants to move all of the time. She is still rolling over all day long and making her walker go. She is very happy!!
We look forward to updating with more good news. Thank you for checking in on us, we love hearing from all of you and feel thankful to have each of you in our lives.
Tanya
December 15th, 2009
Can you all believe that I am updating again so soon!! I truly believe the stem cells have had a huge burst of energy within Ella this past week. I had been so amazed at the things Ella had done prior to my previous posting but this past week has been nothing short of astonishing! Ella has rolled over consistantly for a solid week and ALL day long. Everytime she rolls over she claps for herself, it is way too cute! She rarely just lays flat anymore, she gets up on her arms and holds her head up looking all around and does this for extended periods of time. It is so great to see. Also, she has been able to take steps forward in her walker since last Thursday. She gets hung up in the kitchen constantly and she lets me know when she is stuck. We are thinking hard wood floors are in our future so she can go more places:)
I am very happy to say that today was an awesome therapy session, she didn’t even get mad at Andy today. She was happy as could be and did all kinds of things for him. We were so proud of her and for remaining happy even while she worked so hard and we knew she was wearing down. Thank you Lord! What a great day again today, I feel so thankful and blessed. The stem cells are showing their power and doing what we prayed they would do. Ella has been healthy despite all the flu going around out there and each day we send up a prayer to keep her healthy so that the stem cells will continue to do good things. What a miracle we received in those stem cells:)
November 11th, 2009
Hi Everyone! It is with much excitement and joy that I bring you this latest update! Ella has had a remarkable past two weeks. She is now able to hold herself up in a crawling position! This has been her new therapists goal and within two weeks time she accomplished it:) Wow were we ever excited! I am sure that the people out in the waiting room wondered what in the world was going on in Ella’s room as we cheered for her. We were so excited and she was able to hold it for a few minutes which was simply amazing. We have chosen to do private physical therapy and her new therapist is focusing on transition moves to enable Ella to learn to get up and going on her own. It has been so incredible to see what she has learned in such a short time and how she anticipates the change in movement each time. He says that Ella has all the componets needed to move and he is determined that she will do these things we just have to continue putting her in these postions over and over again. This afternoon was a testament to what she is learning as she was all over the floor doing every kind of movement imaginable! And HAPPY, she is so happy when she is moving it must just feel so good to her to be able to do these new things. Again, I cannot say enough how much stronger Ella is……incredible! Her sitting just gets better and better and she can sit with her legs to the side as shown in one of the new pics at the top of the website page. She is so relaxed. Also, she is doing great standing in her walker even without shoes, totally flat footed and bouncing herself up and down and going backwards. I know it is just a matter of time before she really takes off in it!
Ella also is playing peek a boo and just thinks this is a hoot! She is making new sounds as well so everything is just really taking off for her. Her Ped. doc was so happy at her last check up to see how happy Ella was and how strong she is, she really remarked on just how strong she is and how her hypertonia has gone away. YEA! We also feel she is using her vision everyday, truly everyday I can see her really using her eyes. I believe she sees a lot more but just cannot fully express to us what she is seeing. She plays with my face a lot and really is more engaged with what is going on around her AND I have caught her looking at the tv and responding with laughter at Winnie the Pooh and Barney!! Again, YEA!
Ella turned four this past Thursday and what a truly joyous day it was. It was so emotional as we sang Happy Birthday to her and her twin sister, Addison thinking of the journey that little girl had been on this past summer and just having us all home and safe together to celebrate another year of Ella’s precious life. God has certainly watched over our family this past year and continues to carry us as our journey has not come to an end but only just begun with Ella.
I will look forward to updating again as Ella continues to amaze us. Thank you to those who still check in with us~we saw some of you this weekend ( Hello Helen and Hazel and Deb:) We love all the emails and postings on the website, your thoughts and prayers mean so much to our family.
Tanya
November 3rd, 2009
Ella’s strenghth today has been that of 5 kids! No kidding! She took my hand and pulled herself up into a standing position! It was incredible:) Even though she still needs us to help her into these positions the point is she is making that connection as to what her body is capable of doing. I can see each day that she understands what her new therapy is all about and she is so tolerant of all these new positions and wants to be up all the time. She would much rather be sitting up these days and interacting with us than laying on the floor. This new change is very exciting as it shows us she wants and knows that she can be more involved with what is going on around her. Her sitting skills have improved 100% since her trip to China. Her legs are out stretched in front of her and she is not so rounded in her sitting, she is sitting very straight most of the time. In PT we are working on her side line movement to get her to transition on her own into a sitting position. If we could accomplish this which our new PT says we WILL do! ( I love that guy:), what an amazing thing that would be. This is goal #1.
As far as Ella’s vision goes, I saw a huge improvement last week as I placed a book in front of her without saying anything to her and she began to focus, smile and then reach out and touch the pages. She did this a number of times and then I began telling her about what was on the pages. She really looks at our faces so much more now and looks right into our eyes. We have no doubt that she is using her vision a lot more than before.
We pray that Ella remains healthy this winter so that she continues to be strong so she can support herself with her sitting and such. Please keep those prayers coming~ we continue to feel them working their power everyday in our lives. Thanks for all the emails and other messages we continue to receive, we love hearing from each of you and knowing you are still cheering for our sweet little girl. GO STEM CELLS!!!!
Until next time,
Tanya
September 30th, 2009
Sorry it has been so long since I last updated this blog. With Blake and Zoe back to school, dance class starting back up for Zoe and working on various things for Ella it has been a busy time.
Ella continues to do very well and is still enjoying being in her swing outside which still amazes me each day. She loves it and I have let her go a little bit higher in it……she loves this and giggles so hard however it scares me but I stand right in front of her to be able to intervene if needed:) One of her favorite pastimes is sitting on the couch. I believe her love of this stems from spending so much time with her Daddy and stem cell family on those orange sofas in China:) It is so nice to see her sit there like such a big girl with her legs placed out in front of her so relaxed. We were at a friends home on Sunday and she sat on their sofa and just had a wonderful time showing off all she could do. It was great seeing her relaxed and comfortable out of her own enviroment. She continues to work on her sitting and getting away from using those hands for support. I encourage her with toys hoping she will eventually realize she can support herself which she has for little bits of time without using her left hand for added support.
She recently had all of her post China follow ups with all the docs in Iowa City and they were all very happy with the changes they were seeing. Especially happy and interested was her orthopedic doctor who I just adore. He was so happy and they came to the conclusion that Ella may not really need her AFO braces that she wears on her legs since her hypertonia has improved and she is strong on her legs without them. We just bought new ones for her so I am still putting them on her for various activities however I like how she performs without them too:) Her othopedic doctor has always been convinced that Ella will do well it is just a matter of time for her to put everything together. We have also decided to start private physical therapy which we will begin next week locally. We are excited to get started with the new therapist and see what happens.
I have been busy speaking with some other families who are thinking of making the trip to China and I really enjoy being able to help them by answering questions and sharing our experience.
That is about it for now. Thanks to those who continue to check in with us and for those who have visited us, we enjoy it! To our stem cell family, we love hearing from each of you and yes, I owe several of you personal emails not just a blog update……you will hear from me soon:) Hope you are all doing well, we think of you each and every day:)
Tanya
September 10th, 2009
I am happy to report that we continue to see many more changes with Ella. Today especially has been a wonderful day for her and for the other children and myself as we marvel in her progress!
Ella has spent the afternoon rolling constantly from side to side…..almost going over numerous times and pulling herself up. She is so happy and we can tell enjoying her new moving skills. She has been tracking more objects and Zoe has been making all sorts of things for Ella to look at today, it has been wonderful. Blake starting yelling this morning as he found Ella up on her legs, tummy and all off the ground trying to crawl! WOW!
Ella really has increased stamina and strength. Her movement has increased so much, it is so exciting. One of the most wonderful developments since Ella returned home is that she can sit in her little swing. This is not something Ella had done since she was an infant due to her hypertonia. Being able to put her in her swing and see the big smile on her face and listen to her laugh is more than I could have asked for right there. It brings tears to my eyes…..tears of happiness of course.
Now, one thing I do want to mention is that Ella is not suddenly doing certain things, it is just that people didn’t realize she could do these things before. For instance, Ella has always been able to hold her head up very well. The thing is when in a large group she has a tendency to tuck her head down into our shoulder as she is scared of all the noise, etc…Some of our visitors have commented on her holding her head up, I just want to let people know this is not something new for Ella. I do believe she is becoming a little more social and not so scared of strangers now. Also, Ella has been a ble to tripod sit for a very long time now and also hold her head up while on her tummy. So while these may be things some people are seeing for the first time themselves, it is something we have enjoyed watching Ella do for a very long time.
Like I said the main things we are seeing is increased movement. Ella moves in many different ways now then before. Her overall strength is just amazing. She chatters in different ways too, loads of new sounds and she said Blake yesterday! We are very happy with all the new progress Ella has made, it is incredible.
Oh, the other thing someone asked me about was Ella seeing light. This is not something new either. Ella has always been able to see light. The only thing we are noticing is increased sensitivity to the sun and the flourescent lights at the hospital drive her nuts. She rubs her eyes all the time which we have been told is a good sign the stem cells are working:) Again, all good things!
I plan on typing up a patient experience story to share on the stem cells china website and I look forward to getting that done. We have been contacted by other families thinking of making the journey and we are happy to be able to help them on their way. We continue to keep in touch with many of the stem cell family members although only a couple of families are left in China. We are so happy to hear when another family has made it back to their homes safe and are reunited with their loved ones.
Our contact person from Beike, Luca, called me the other morning and I was so excited to hear from him! He was not in China when Don and Ella were there so they were not able to meet him but he was so very helpful throughout our whole process of planning the trip. Whenever I would worry about something I would send an email to Luca and he would put my mind to ease. I would be worked up and then tell Don that my best friend Luca calmed me:) So it was so nice to hear from him and to have him check on Don and Ella and make sure they had a safe trip home and to see how Ella was doing.
I will continue to update as Ella continues to do exciting things!
Tanya
August 18th, 2009
It has been such a good day here with Ella. I sit here typing this positively amazed at what she has accomplished today. Her strength is amazing! She was in her stroller this morning and she started to slide down and she was able to pull herself back up into the position she wanted. This has never happened before! She kept pushing down with both feet against the foot of the stroller and sitting herself up really tall and straight. I yelled for the other kids to look so that I had someone to back me up on this:) They were so excited. She is just holding herself up so much more than before AND she is doing so good with her therapy! The little smartie participates fully after only a couple of reps with her arm and leg excercises and she giggles and smiles the whole time. She takes my hand and moves my hand in the direction she is to go, it is so cool. I believe she is finally getting back on Iowa time. She slept longer last night and is just now napping at 2pm so am hoping she will take a shorter nap today and be ready for dinner time with the family and more of a normal bedtime tonight but today has been much better schedule wise. Another note…..the silly faces just keep coming especially at meal time! It really is hilarious and some of the new laughing is just hysterical! I tell her to open wide and she bugs her eyes out and bobs her head forward and opens her mouth huge and then laughs. What a character! She is also using her right hand all of the time even to reach out and grab toys, etc…it is much more relaxed.
I wanted to take some space on this update to thank some very special people………..
To everyone at Beike for all of your hardwork and research. You give families like ours hope. Thank you for providing Ella with these amazing stem cells and also thank you for answering all of our questions prior to our decision to come to China and also for all of the help with travel plans,etc…We cannot possibly say thank you enough!
To the doctors, nurses, translators, therapists and other staff at Chengyang People’s Hospital in Qingdao. You were super! Thank you for taking such good care of Ella during her treatment. The nurses went above and beyond to make sure Ella was comfortable. You were so kind and your care will never be forgotten. Thank you for helping Don and explaining everything so clearly to him. Also, thank you for the transportation to and from the airport and the help in tracking down Ella and Don’s care package:)
To our new beloved stem cell family. I cannot express to you enough how much your support and care meant to me during Ella and Don’s time in Qingdao. Even though I have not personally met any of you I feel so close to each one of you through Don’s stories, “meeting” you via Skype and now by emailing back and forth. No one clearly understands what a personal journey this is to China unless they have gone through it themselves. We now have this amazing circle of friends who know what it means each day to have a child with special needs or a loved one trying to overcome some type of struggle. We can now lean on each other even after this journey to China has come to an end and know that we will always be friends. We wish all of you wonderful results and continued blessings. I am counting on the stem cell reunion…….and please know that you always have a place in Iowa now to come to:)
To the wonderful people of China. I can’t count the amount of times that Don shared with me a wonderful, touching story of someone coming up to him commenting on how beautiful Ella is. You were so kind and sweet. You saw our beautiful little girl, not a disability. You treated her with compassion and respect. I love my country, don’t get me wrong however everyday here people only see a child struggling with a disability not just a beautiful, loving child. If I could change one thing among our society it would be for people to be kinder to those with special needs, they are human and have feelings just like you and I. Sometimes just a smile means the world. Also, don’t forget….just because someone cannot communicate fully with words does not mean that they don’t understand. Nothing frustrates me more than Ella being ignored even among those who see her often because she does understand everything and if people don’t communicate with her she will never know their voices or be comfortable with them. She is a smart little cookie, please remember.
To my sweet little Ella. Thank you for being such a good girl for Daddy and for being so brave and strong throughout your journey to China. I am so very proud of you and you are my light. My world changed the day you were placed in my arms, you have taught me so much and opened my world to so much more than I ever thought possible. I am a stronger person because of you and I will move mountains to give you everything possible so you may have a full and wonderful life. You stay strong and we are going to work hard to help those stem cells grow!
To my amazing husband Don. I won’t get too mushy:) Thank you for going on this amazing journey half way around the world with our daughter all in the name of stem cells. You are the best father and husband and you amaze me everyday by your strong character and sincere kindness to others. I know you helped other families in China by being such a good listener and giving advice when needed, I am proud of you. You are the best!
Please keep checking this blog for more updates on Ella’s progress!
God Bless,
Tanya
P.S. A big oops for omitting a name earlier…..to Katie Corkern thank you thank you thank you! You held my hand all the way from Louisiana to Iowa throughout the planning of this trip. I could not have done it without you! I wish you and Connor and the rest of your family all the best. You have a friend for life in Iowa!
August 6th, 2009
Sorry for keeping you all in suspense for so many days now, I have been enjoying having my whole family together again and have not taken time to update. It has been such a relaxing and wonderful weekend just hanging out here at home.
We arrived home from Chicago at 2am Friday morning. It took a total of 31 hrs. for Don and Ella to make it back home to Iowa. Their plane was delayed in Shanghai by several hours due to weather so they did not land in Chicago until 7:49pm Thursday night. It was a long day of waiting for that plane to arrive. I must have checked that board a hundred times and would be so excited when they would gain time. They ended up in a holding tank over Janesville Wisconsin for awhile before they could land in O’Hare so I had to be paitent. Seeing the word LANDED come across the board was so sweet and I was seriously jumping up and down in the middle of the airport. We had met a gentleman from Chicago who was waiting for his niece to arrive and he was giggling at me when I was getting so excited. It was so awesome to see Don and Ella again…..yes I know we saw them 3 times a day via Skype but getting to hug and kiss them was just THE BEST!!!!!
The ride home was great! Ella laughed and carried on all the way home. Don said she was super on the plane again…..plane travel seems to agree with our little gal. We stopped in DeKalb IL to refuel…both the Yukon and some tummies:) Ella enjoyed a Mcflurry from McDonalds and we were on our way. She was still wanting to play when we got home….still on China time. So around 4 am she decided to sleep for a little bit. Don and I were on an adrenaline rush so stayed up talking and just watching Ella.
I am already amazed at the changes I am seeing in Ella. She is stronger, chattering more and moving in different ways. She is making all kinds of funny new faces and sounds and when we put her in her walker on Saturday she could stand in it without her braces or shoes. Totally straight with full weight on her legs…..wonderful. She also seems to be using her vision more. I got her to follow my finger and her cup on Friday during lunch and we were very excited about that! She was in her stander today again without the use of her braces but with her new tennis shoes on from China. We took her outside in her stander and she was loving the fresh Iowa air.
It has been a wonderful homecoming and we can’t wait to watch Ella as the stem cells mature to see what they can do for her. I wanted to thank our neighbors the Moeller’s for the nice welcome home sign for Don and Ella-that was so nice of you! The kids spent the day at Gpa and Gma Bentler’s along with their aunt and a few cousins and they made signs to put along our drive way and on the garage door so it was fun to read those as we pulled in the drive. The kids and I had made a sign and put some balloons by the door that morning before we left and they were so excited for Daddy and Ella to see them:) They also made some side walk chalk creations on the drive so they had lots of fun preparing for their Daddy and sister’s return.
I will continue to update on Ella’s progress. Please continue to keep her in your prayers.
Love,
Tanya
August 3rd, 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
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