Hello Everybody!

Thank you for visiting our website. I know, I know it has been a while for some updates but here they are.

Where do I start! I guess you know already that we moved from Warwick to Fair Lawn , New Jersey. It is about 35 minutes from Manhattan - close enough for Fred to be able to commute and far enough to be living in a more rural area. We love the new house it has everything we need for our growing family. No there is no new little one on the way but as you already saw we have Natasha - Theo's Au Pair living with us so we needed room for her.

So at the beginning of the summer moving was on the agenda. Right after the move we decided to leave the country to visit family and friends in Germany and France. Theo has not met anybody except his grandparents so it was time to go. Thank god Theo is a great traveler and had no problem with the flights.

We spend time in Germany , went to the wedding of our friend Francois , went to Paris and enjoyed ourselves. We had a great time.

Back in the US lots of boxes waited for us and we only had 3 days to get ready for Natasha's arrival. We think it was a shock for her to come to the US- first flight- first time away from home. Her new life would start and she would soon make new friends.

We are still far from being settled in the new house and Theo's agenda is fuller then ever.

On September 8th Theo started school / kindergarten at the children's Therapy Center in Fair Lawn. The reason we actually moved to Fair Lawn. It is a great school and Theo gets a lot of attention and all the help he needs. He is going 2 hours twice a week. I am able to stay with him there and be his assistant at this point in time. We love it there!

Theo had very rough two weeks - he suffered from reflux which was incredibly painful for him.

The cuddliest boy on this planet did not want to cuddle anymore - we knew something was up!

He never cried that much, crunched and shacked. It was very scary! Thanks to our fantastic pediatrician who was able to diagnose it - instead of speculations for seizures - Theo got the right treatment and is on his way to recovery. He is still very sleepy or better again! We had to stop all treatments (hyperbaric, Nitro, Supplements and early intervention) until he feels better. He is getting there just in time for the inauguration. What a time in history! Time for change!

For me the brightest lights of Christmas aren't the ones that plug in or twinkle.

They are the people who remind me, just by being themselves, to hope more and worry less....

to slow down and feel the wonder every chance I get....

and to say yes to joy,

no matter when, where, or how it comes.

by Keely Chace

We are so thankful this Christmas that Theo is home, growing and going his own path. It has been a challenge to be in a place of acceptance without giving up hope. We learned to surround ourselves with people who belief in miracles and our son. Every day he does something new or better then the day before. What a fighter this little guy.

He taught us that there is no point in worrying about the future but rather stay present and take one day at a time. One can not predict life and what a waist of energy to contemplate on what if....You will never know if you children, even the healthy once- turn out OK. You can only give your all, love them for who they are and be there when they need you.

Another realization this year was that things come to you when you need them and are ready for them- sometimes introduced a second time because we  did not quite listen the first time.

We knew from the beginning that Theo had trouble regulating his temperature. We kept our house at 85 degrees, dressed him up and checked if he felt warm. That was not enough. Theo can not create heat by himself so we have to provide it for him. That lesson hit home run about two weeks ago when he felt OK to the touch but his core temperature was 93.5 degrees. WHOW - who would have thought. Now we check his core temperature every two hours and heat him up with heating pads/ dryer warmed blankets etc. and guess what happened....

The sleepy kid woke up- so much more active, alert and voicing his needs. What a difference. The Therapist think we exchanged the kid!

It is a journey and we are hear to learn and grow.

We wish you all a wonderful holiday season filled with love, joy and happiness.

Love                 The Stells

Theo is turning one today. He is already such a big boy and we feel so blessed to have him in our life's.

I was quite scared of this day - reliving the memories of his birth and the trauma we experienced right after. I had a hard time to imagine a day of celebration but I had to work on it. There is no point reliving the past, making it my present but rather staying in the moment, enjoying this little soul and embracing the progress he makes on a daily basis. We are so grateful for everything, even the experiences we  had to go through. We learned so much in this year about life, ourselves and of course all the medical aspects of Theo's condition.

We were able to stay in a place of hope and positive thinking, which we believe got Theo were he is today. Healthy, eating, growing and just such a sweet young man. We are just discovering his sense of humor and I tell you he can be funny!

For Thanksgiving we are grateful for many things- our family, life itself, our love for each other and the love and support we experience from all of you- Thank You!

Theo as our Pumpkin.

As you just read Theo started another Therapy program.

The Anat Baniel method for Children based on Feldenkrais. We read a lot about it on the blogs for brain insured children and we are giving it a try. This method is supposed to "teach" the child own movement and use their bodies better. It is a very gentle approach- no crying involved with is already fantastic.

Go to www.Anatbanielmethod.com or www.feldenkraislearningcenter.com (for NY) to learn more!

Theo is doing excelent at pushing himself up on his tummy and he already did his first steps with mommy's help. Such a good boy.

Talk to you soon,

Sonja

Our trip to Florida was great. We had the weekend to digest the info from the family hope center and finally have some family time. Nice walks at the beach, tub time with Theo and just hang out! No Therapies, schedules or anything to do. We loved it (for a day ).

On Monday we met Dr Hammesfahr. We were not sure what to expect and were pleasantly surprised on how friendly his staff was, how much time he spend with us and that he was planning to DO something about Theo's condition. NOT JUST WAIT AND SEE !!!!

After an examination and an ultrasound of his blood vessels of the head we started the treatment. We came to see him every day for a week and were send home with an exact dose of the medication, which is just a cream on his food.  We are eager to see some change.

Theo loved the weather in Florida and tried to convince us to move there. But once we told him about Hurricanes he agreed to come back to NY. Good Boy!

We are glad to be back home and started to set up his Therapy area to make it easier for mommy to do the exercises with Theo.

We are doing well and are excited to have Monique and Andre come from France next week. Theo is getting a little rusty with his French!

Talk to you soon,

Love Sonja

PS Zoe has a new boyfriend : Aussie Blue, handsome young man. She lived with him while we were inn Florida. And Hudson is still on his honeymoon with Lilly in Manhattan- he will be back on Sunday - extended his stay! We have spoiled kids that's for sure!

Sorry it took me so long to write an update. Life after China has been exciting. Catching up with bills - cleaning the house - improving Warwick further and before I forget - playing with Theo who is more awake and takes up ALL my time. Yes he is getting finally in a better awake / sleep schedule versus only sleep like he used to the last 9 month.

We were so excited to finally have an evaluation at the Family Hope Center in PA. A place which looks at his abilities versus disabilities like the rest of the medical community.

They tested his reflexes, movement, response to lights, sounds and smells, body coordination , nutrition, and many more. It took a whole day with different professional who all took their time and listened to us. It was great. Then the final diagnoses : severe bilateral brain insury. his cronological age of 10 month was matched to his neurological age of 1.41 month. Which means Theo is delayed in many aspects, he can't see, does not process sounds well, does not smell a thing.

Now the GOOD NEWS:  They created an intense program with us to wake up his senses and get him to interact with the world and hopefully enjoy it!

We are going to stimulate his vision, make him smell a lot of things and not all are pleasant. try this out- put some rotten veggies in a jar and let them sit. open the jar and take a deep breath in- it knocks you of your feet. Theo did not even twitch whereas mommy was ready to use the bathroom.

In addition plenty of sounds and touch stimulation's as well as crawling ramp, hyperbaric oxygen and a CO2O2 treatment. And I almost forgot coordination training for 2 hours a day to get the crawling idea. We need 6 volunteers a day (it requires 4 people each session to do it). If you read this and you live close buy- please spread the word that volunteers are needed for 1 hour at 9-10 AM and 7-8 PM. THank you!

After our heads were spinning and we came back from PA we had to change the luggage and pack for sunny Florida. Here we are going to meet a Neurologist who works with stroke victims and brain injuries and has had amazing results. Lets pick his brain to see if there is more we can do for Theo.

We just came back from lunch and I am always amazed on how people think it is so great that Theo sleeps so well- "he is such a good sleeper" - yes he is and that has been our problem. But hopefully he will get stronger and stay awake longer.

We are very hopeful that one day this little fellow will be seeing this world and  I am waiting for the words: Mommy look!

Thank you all for checking on Theo and having him in your prayers. He is an amazing young man and we can't wait on how he is going to be when he is a big boy. We definitely have a journey ahead of us and we would fly to the moon if we have to.  Our Hope is strong and we are dedicted to get him "AWAKE".

Love

Sonja, Frederic and Theodore

After a lot of time to think in China we came to the decision that it is the best to sell our house in Warwick, NY. Keep your fingers crossed that it will be a quick and good sell.

We really thought that Theo would be able to have his own memories in this house and run through the grass, build that tree house, relax in the hammock. Life changed and so have our plans. We still believe it is for the better and something really great will present itself.

Theo is doing OK. He is back to being more sleepy and very quiet- he seems to take the world in as an observer- not as a participant. We hope that will change.

Talk to you soon,

Sonja, Frederic and Theo