it's been a while

Well we haven't been here in a long time. We have let this blog linger for so long and we feel totally guilty about it. We have gotten a lot of email and there is no way we can answer all of it but they mostly all ask the same questions. How was it in China and did it do any good? Unfortunately the second question and the more important one is very difficult to answer. So much has happened with Tobin in the last 11 months that we are not sure which factors have had the most effect on his development. After the stem cell therapy we noticed very few immediate changes. In february Tobin had an EEG that showed that he could possibly have West Syndrome. He was put on medication at this time and over the next few months his EEG improved. In March we also began doing sleeping training and after rediscovering swaddling and taking away his pacifier, he began sleeping through the night. In time his mood, his ability to stay calm, his primal reflexes, his tone, and his "awakeness" have all greatly improved. We still have phases where he has trouble sleeping or where he is very tempermental, but all in all he has improved dramatically since last November. With all the different factors which could contribute to his improvements, we cannot say what effect the stem cells had on him. Once again it is just a question of time before any one has any solid evidence about whether stem cells can help people with cerebral palsy. We are not sure. Tobin is still motorically like a 1 month old. He cannot sit, roll, grab, talk. He tries very hard and has made slow progress. Every little thing counts! Time will tell how far he develops. Right now we live with him one day at a time and help to make his life as enjoyable as possible. He is a happy baby. I guess that's all that really matters in the end. We wish anyone who chooses to do stem cell treatments all the luck in the world but we cannot give any advice one way or another. Thanks to all again for the nice comments. Take care and peace!

Rob, Maiken and Tobin

Home!

Maiken says it was easier. Rob says it was harder. Tobin says "grrrlllre". Another 25 hour trip is over, and I'm sitting at my desk at my house and thinking maybe it was a dream. Travelling makes all experience seem ephemeral. When we were in China seemed like we were there for a year, and now that I'm here it seemed like it lasted a heartbeat. We have returned and all of a sudden it is winter in Berlin. We are extraordinarily lucky that Ute and Wiebke are here once again to rescue us upon our return. We arrived home to an immaculate house, a delicious Daal soup, birthday cake, and our giant, comfortable bed. Ute is taking great care of Tobin most of the time so we can chill out a bit. We are happy to be home. The feelings that our mission was not quite complete remains, but we are settling in here and it will soon just be a question in the back of our minds. At the airport we were greeted by a couple of cameras from some people we know who are attempting to sell our story as a documentary to a German television channel. They came with us home and even after such a long trip we were able to give a short interview. The general feeling from China that we expressed is that we are still not sure what the stem cells will do for Tobin, but we trust the people who gave us this chance. This was the biggest question we had before leaving. Is this just a big scam? Are people just trying to take advantage of desperate people by utilizing all the hype about stem cells? After meeting the doctors and nurses and patients at the Beike clinic, we came away with the feeling that they all sincerely believe in what hey are doing. Now we are sure that we did the right thing once and for all. Now we will see what it does for Tobin. Thanks once again to all who made the trip possible. We are sending lots of love to all who supported us and we felt you were all with us in spirit during our time in China. And good luck to all our fellow patients and parents and all those who give them their hope and support. With hope and determination, we will all carry on. Now carry on!

4th Stem cell injection and Last Day in Hangzhou

The bags are packed and our last day in Hangzhou is coming to an end. On Monday Tobin received his last stem cell treatment by infusion. It took them three tries to set the IV which was pretty stressful, but the rest of the treatment went smoothly, and that was that. I guess at this moment we are feeling a little bit empty. The treatments are over and we don't have much concrete to show for it. We haven't seen any improvements except maybe that Tobin is a little more elastic and is sleeping better than when we first arrived, but this may be due to the fact that the whole environment here is more relaxed than at home. He hasn't gone out too much here and there is not all the running around and hustle bustle that he experiences at home in Berlin. We experienced the same thing in Mallorca. He was just in a better mood and slept better when were there because we were all that much more relaxed. We shall see how he does when we arrive home. We are also looking forward to seeing what his therapist says. We have an appointment on Monday, but right now it is all a bit anti-climactic. We feel all in all that the doctors here make very little effort to evaluate the patients before and after the treatment. The physical therapist did evaluate him before and after but she could not explain very much and her assessment was summed up by saying Tobin's tone has gone down and he needs less support to sit by himself. This was kind of inadequate as far as we are concerned but I guess the doctors here expect you and your own doctors to do your own evaluation. The only thing they do here is the stem cell treatment and that's it. The doctors do say that we should wait three months to say whether the treatment had any positive effects which is more realistic than expecting any changes in the three weeks since we have been here. So now we just go home and see what happens...

Tomorrow morning we leave at 6:30am for the Shanghai airport and will arrive in Berlin at about 10pm. We will post some pictures of the last couple of days after we get home. Wish us a good trip and see you in Berlin!

3rd Treatment

Just wanted to let everyone know that the third injection went very well yesterday. Tobin was downstairs in the operating room for about an hour which was a little longer than expected, but when the nurses finally brought him upstairs he was just laying in bed happily sucking on his pacifier. Unfortunately he didn't take a nap after the treatment so he was really cranky until he finally had a short scream session at 8pm. He was then in a good mood and was able to eat something and then go to sleep. The night was then relatively quiet after that. We were lucky because our Oregonian friends were up half the night with their son. We know how that feels though... We will write more soon. MRT

Excursions...

Well, we have made it out of the hospital a couple of times now. A couple times to downtown Hangzhou for Maiken and one time to the nearby lake Xiang. All in all downtown Hangzhou is nice, especially the area around West Lake. For the last couple of years the neighborhood and the city in general has really boomed, and you can see it in all the fancy restaurants and boutiques that have been built on the lake in the past seven years or so. We have posted a few of the best photos on our Flickr site.

The rest of the time we spend in the hospital or in its general proximity. Tobin goes in for his third treatment tomorrow. We are much more relaxed this time around since the first spinal went so smoothly. We will let you know how it goes.

On a side note, a spinal cord injury patient is staying two doors down from us and I got a chance to talk to him today. His name is Gabi Iordache from Romania and he is here for his third time. He had an accident diving into a river about twelve years ago after which he was paralyzed from the neck down. The doctors said it was permanent but after a lot of operations and therapy the feeling in his torso returned and he was able to raise his arms to shoulder level. Two years ago he started the stem cell therapy and he has seen some remarkable results. We have all been really motivated and inspired after hearing his story. He and his parents are really remarkable and their fight to rehabilitate Gabi gives us a lot of hope.You can read the full story here. It has been a really positive experience for us to talk to other people who are facing some hard circumstances with a real fighting spirit, some in very similar situations to ourselves. This maybe another key to why people who come here start to see such improvements. We can only hope that Tobin soaks up the positive vibes... see you tomorrow.

2. Stammzellbehandlung am Freitag, den 9.November

Familie Rohdenburg-Ramirez hat gute Stimmung! Das Baby hat seine 2. Stammzellbehandlung, dieses mal über das Rückenmark injiziert, mit Bravour hinter sich gebracht. Nachdem Tobin eine kurze Mittagspause gehalten hat, haben wir zusammen mit anderen Eltern aufgeregt auf dem Flur auf die Zellen gewartet. Das Flugzeug, das die Zellen frisch aus einem anderen Krankenhaus einfliegt, hatte aber leider Verspätung. Vielleicht auch zum Glück, so hatten wir genug Zeit uns mit der Situation mehr anfreunden und unsere Aufregung kam nur noch kurz einmal hoch, als Tobin mit seinem behandelnden Arzt Michael im OP verschwand, wo er eine Vollnarkose bekam. Nach 30min Wartezeit machten wir uns wieder mit dem Fahrstuhl auf den weg von der 20. Etage in die 3. Etage, wo der OP ist. Nur leider hielt der Fahrstuhl auf jeder Etage und als wir es endlich geschafft hatten, trafen wir nur noch einen Arzt ohne Tobin an. Der ist parallel zu uns mit einem anderen Fahrstuhl hochgefahren worden. TYPISCH ROB & MAIKEN! Als auch wir endlich bei unserem Sohn im Zimmer angekommen waren, hatte sich schon eine Schwester liebvoll um ihn gekümmert und nuckelte zufrieden an seinem Schnuller. Die nächsten 2 Stunden verbrachte er dann schlafen neben Rob im Bett, anschließend bekam er was zu trinken und war quitschvergnügt. Jetzt heiß es noch ihn bei Laune zu halten, bis er seine 6 Stunden im Liegen verbracht hat. Damit hat Tobin seinen Rekord im Liegen ohne hochgenommen zu werden gebrochen!
Für alle die es interessiert: Tobin muss flach liegen und darf nicht seinen Kopf anheben damit sich in seinem Kopf aufgrund der zusätzlich injizierten Flüssigkeit kein Druck aufbaut, er keine Kopfschmerzen bekommt und sich nicht übergeben muss.

Erste Stammzellinjektion, Stem Cell Infusion #1

Am 05.11.2007 um 15:00 Uhr bekam Tobin in Xiaoshan District, Hangzhou, China im Krankenhaus seine erste Injektion Stammzellen über die Vene. Die ganze Prozedur verlief mehr oder weniger ohne Zwischenfälle. Nach einer langen Mittagspause kamen 2 Krankenschwestern und legten Tobin seinen Zugang. Dies hat leider zu lange gedauert und Tobin hat von seinen Stimmbändern ordentlich gebrauch gemacht. Ob es an den langsamen Schwestern oder am zappeligen Tobin lag? Wohl an beiden. Anschließend sind wir in den „Infusionsraum“ umgezogen. Dort saß schon der 1 1/2 Jahr alte Christopher mit seiner Mutter und schaute Video auf einem kleinen DVD Spieler. Auch er hat beim Zuganglegen ordentlich gebrüllt. Ich bin mir ziemlich sicher, dass die kleinen Jungs nicht nur weinen, weil das Stechen weh tut, sondern es gefällt ihnen einfach nicht festgehalten zu werden. Verständlich!
Über die Infusion bekam er Kochsalzlösung, Stammzelle eingelegt in Plasma und Nervenwachstumfaktor (NGF), und ein Antiallergikum falls es doch zu einer Immunreaktion kommen sollte. Nach ca. 20 min war der Spuk dann vorbei! Die möglichen Nebenwirkungen wie Kopfschmerzen, Erbrechen, Fieber sind bei Tobin zum Glück nicht auf getreten, er war wohn ein bisschen blass aber ansonsten OK. Den nächsten Tag über war er glücklich und vergnügt. Seine zweite Injektion wird er am Freitag, den 10. November bekommen, und zwar diesmal als Rückenmarkinjektion. Wollen wir hoffen dass auch diese Prozedur reibungslos abläuft: 6 Stunden vorher keine Nahrungsaufnahme, Vollnarkose für ca. 3 min, Liegen für weitere 6 Stunden, erste Flüssigkeit Aufnahme nach 2 Stunden. Wenn wir das Heil hinter uns gebracht haben darf ein freies Wochenende kommen!!!!!!
Trotz der ganzen Umstände müssen wir sagen, dass es uns gut geht. Unsere Wäsche wird gewaschen, wenn wir wollen bekommen wir mittags und abends essen geliefert, unser Zimmer wird jeden Tag geputzt, eine der Putzfrauen bringt uns immer ein leckeres chinesisches Frühstück mit, wir halten eine gepflegte Mittagspause, Rob´s Akupunkturarzt und Tobin´s Physiotherapeut (eine ganz süße, kleine Chinesin) kommen aufs Zimmer und wir haben einfach gerade keine großen Verpflichtungen. Uns gefällt das!!

On the 5th of November at 3PM Tobin received his first stem cell infusion in the hospital in Xiaoshan district, Hangzhou, China. The whole procedure went by without incident. After a long nap, two nurses appeared and applied the IV. This took a little bit too long and Tobin was able to exercise his singing voice. Was it the fault of the slow nurses or the wiggly Tobin? Probably both. We then moved to the infusion room where 18 month old Christopher and his mom and dad were watching a video on their mini DVD player while Christopher received his last of five injections on this his second trip to China. He also screamed pretty loud when they applied the IV. I’m pretty sure that these two boys don’t cry because it hurts to get stuck with the needle, they just don’t like it when someone holds them still. Very understandable! The infusion contains at first sodium chloride solution, then an antiallergy medicine in case an allergy arises from the plasma, nerve growth factor, and the stem cells in plasma. After about twenty minutes it was over! The possible side effects, headaches, fever, nausea, did not occur in Tobin’s case. He was a little pale but otherwise o.k.. The next day he was in a good mood. His second treatment will be on Friday the 10th, but this time the cells will be injected into his spinal fluid. We’re hoping that this will also go over smoothly even though it involves: 6 hours before no food, general anesthesia for as long as it takes to do the injection, he has to lie flat for six hours after, and no liquids until 2 hours after. After this we will have earned our free weekend!

Besides these challenges we are pretty happy here. We have someone washing our clothes, when we want our lunch and dinner are delivered to our room, our room is cleaned everyday, the cleaning lady brought us delicious steamed meat buns for breakfast (good for Rob!), we take naps everyday, Rob is getting accupuncture for his various climbing related ailments and Tobin gets physical therapy from his cute little therapist everyday direct in our room, and we just don’t have that much to do. We like it!!