Archive for August, 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
