ON OUR WAY HOME!!!

Hello Everyone
Thank you so much for everyone that has taken an interest in Alex. She had really made us proud. We have just packed the last of stuff and are getting ready to have our final dinner in the apartment at Graz. We are looking forward to all the home cooked meals over the holiday's. We love you all and really have great hopes for the upcoming New Year. We feel so lucky to have family, friends and even strangers caring enough to check on our progress. We will keep the blog going once we get home. Many wishes for love, happiness and and a renewed sense of hope for all. Miracles and pages do turn. Love the DeYoung's

One More day to GO!!!

Hello all,
As you may know we decided to take a break from clinic yesterday and spend the day on our own. We had a nice lunch at an English Pub, Flan O'Brien's. It was nice because the menu was in English and the waitress spoke English as well. We returned to the hospital today for another great day. Alex actually has had her first day when she gained weight! This is terrific news because sometimes success is considered the children eating enough to maintain their weight. Yippee. I stayed behind today at the hospital and was able to have a very long conversation with the program director Professor Dr. Marguerite Dunitz-Scheer. It was so wonderful to have that time with her. I intend on helping her in the states with her quest to educate the public about the misuse and problems that parents have with total tube dependency in most children that have the tubes put in. I have a lot to tell everyone once we get home. Something funny though, I went to pay the bill at the hospital and the women who handles the billing had gone home. They were so laid back about the whole thing. They just said we'll send you a bill to the US. I thought to myself if that were a US hospital they would be sending someone home with us to make sure that they got paid. So different. We plan on leaving early Sunday Morning from Graz and should be arriving at around 8:30pm in West Palm Beach, it will be good to be home. Hope all is well with your holiday planning. Much Love the DeYoungs

Tuesday in Graz

Today we had another successful day in Graz. Alex continued to taste everything that was at play picnic and yesterday at lunch, she even licked my fish and chips soaked in vinegar. Although this seems very small, we have to remember where she came from. This is a tremendous milestone for her. We often take for granted that children are adventurous when it comes to food. Some are... unfortunately some are not. We continue to see progress. That comes in many forms. Licking different foods and not necessarily devouring everything is site is definitely progress. She use to not put anything in her mouth at all with the exception of her binky. Alex has done a good deal of work while she has been here and the work is just beginning for us as a family. We are looking forward to coming home. The food here is extremely expensive and with the exception of the pasteries and baked goods can not compare to home. We have had pizza several times and they put a raw egg in the middle to cook while it is in the oven. It honestly doesn't taste to bad but it is still not good home cooking. We have plans to skip the hospital tomorrow and do some shopping on our own. Then just 2 more days in the hospital and we should be on our way home. We hope to have a video about the program that was shown in England and this shows the staff and explains their approach perfectly. Will continue to keep everyone posted. Alex seems to have gotten to the point that the rest is up to her and we have learned as much from the program as we probably can and just need to continue the program at home. Look forward to speaking with everyone soon and advising them on the offering food situation once we get back to the states. It is important that we try to maintain the same philosopy at home as we are here. Take Care all. We love you

G-Tube is Gone!

Hello Everyone,



As of Friday afternoon Alex's g-tube was removed. We still have a bit of a mountain to climb in regards to her eating but is a big step not only for us but for her in a psychological standpoint. We and her team of doctors and therapists will continue to follow her very closely to all0w her to continue to develop her feeding abilities and to leave her feeding aversions behind.

Yesterday we rented a car to see the surrounding countryside, experience the culture of the area and to also alleviate some of the stresses associated with the program. The trip was absolutely beautiful and allowed both Michele and I to appreciate not only the surrounding area but the culture associated within Austria. At the suggestions of others we visited a small town, Bad Ausse(translate at your discretion)which is northeast of Graz and approximately 1.5-2 hrs away. Austrian's have been very helpful not only with the language translation but also with suggestions of things to see while we are here. The trip was absolultely beautiful and the kind of scenary was not obtainable anywhere but in this region. We took many photos and will share those with everyone not only now but also once we return. There is a noticeable "easy" disposition of the Austrian's which seems to avoid some of the stresses associated of the Americans and we have discussed this with one of the head of the dept's in the program within the hospital. Families, their possessions and properties are passed on from generation to generation and their families live together in home which are at time over 100 yrs old. Quite a difference from the U.S. where the average household stays anywhere from 5-7 yrs. Anyhow, we feel as if we have learned alot not only for Alex but also introspectively. We are missing home at this point quite a bit and are looking forward to returning.

Alex is currently eating, although limited amounts and varieties but progress continues. While we have been in the program the staff has shared with us correspondence with families which have been in the program. One of the families which was from the U.S. has a child which left from the program eating only chocolate but has since broadened their appetite and has gained weight over the last several weeks-SUCCESS!!. This was a breath of fresh air to Michele and I and has solidified our devotion to this program and it's ability to achieve results.

Many thanks to everyone for their prayers and continued support for all of us. We will keep everyone notified of the continuing process and wish everyone the best. Hope all is well with everyone and look forward to speaking with you and wishing you a Happy Holidays, Merry Christmas to all and Happy New Year!! Lots of Love! Tim, Michele and Alex.

Sorry for the delay in Posting

Hello All,
Today is Weds and I aplogize for not posting sooner over the past few days. Tim came down with a sort of stomach virus that kept him down for the past 2 days. Today he is feeling better but still taking it easy. Alex has been going up and down with regards to eating. Somedays have been better than others. The directors have maintained that this is very normal. They really understand the children and the way that they view food. They are very adamant that we not try to overly encourage Alex to eat but just to provide food for her when she is ready. This is very hard work for the children. The speak very frankly with the children here and they really do understand everything that is going on. They realize that they are here in the program to eat. They all have an internal battle going on. They want to eat but view it as they are giving in if they do. Yesterday, I made toast at the apartment before we left for the hospital. She held on to that piece of toast through 2 train changes and a ten minute walk to the hospital. I asked the PT why she did that and not take any to eat. She said very simply that she knows that she needs food but is still not ready to give in just yet. This is the purpose of the entire program. It is very structured but in an unstructured way. This is about re-training Alex that she is not in control of her surroundings anymore. Many of these children were sick when they were younger and because of their medical conditions they have learned very early how to manipulate those around them to get what they want. It is very hard for them to accept boundaries and not have everyone jump when they ask. Alex is still very strongly trying to maintain her independenance when it comes to her physical therapy. Ava is the PT here and is awesome. She had Alex figured out the minute that she took one look at her. She said this is a very nice, very confident child. Boy does that hit the nail on the head. Alex is not short on knowing what she wants and figuring out the best way to get it. Up until know that meant crying, or kissing us or whatever she had to do. Now we are excercising our role as parents and not jumping when she says so. This is very confusing for her. But, she is behaving better in restaurants and seems to be learning that she has to wait for certain things. Eventually this should translate in to eating food. We have been trying to do some sight seeing. Yesterday, Alex and I and our new friends Reinhold, Bate' and their daughter Moana took a very long walk through the woods yesterday. We sat by a very pretty lake and saw ducks walking across the ice. It was a welcome break from the hosptial as Alex had a pretty rough day yesterday. It has been very up and down, just when we think she is never going to eat she picks up something and suprises us. This is as much training for us as it is for her. For example, there is a child here that was weaned from the tube last Easter. The mother did not follow the hands off approach with regards to the childs eating and the child slipped right back in to her old habits and is back here for re-training. The directors are a husband and a wife that specialize in childrens eating habits. Anywhere from not eating to anorexia and bulimia. The BIGGEST contribution they say that contributes to childrens eating refusal is pressure by the parents to cajole, or convince or bride the child to eat. They believe that it makes the children go in the exact opposite way. It makes sense, this is definately a way that a child can aggravate and push the parents buttons. Sorry to go on and on. Overall, we are doing well and appreciate all the posts and well wishes. Friday we will go out to see the Advent lights at night for Alex's birthday. I will try to locate some party hats for the children to take pictures at playpicinic also. If I can find them, I will post the pictures. Love to all.

End of our First Week in Graz

Hello All,
We have finished our first week and Graz and since Monday, Alex has only had 2 feeds via g-tube. The idea is to keep her healthy but still hungry. Many children actually go backwards with feeding before they proceed forward. She ate more at home orally than she is now. They say that this is because she knows that she is here to eat. Where at home, she would graze because she knew she could count also on the tube feedings. Since she has been here we have told her on the doctors advice that the tube does not work in Austria. They speak very directly with the children here and it makes sense. Anyone that knows Alex knows that she does not miss anything and understands all that you tell her. She is testing us in a way to see how far she can get. She is having trouble still understanding the she is not the boss. This is all part of the process. We have met a very nice couple from Germany who we are going to be getting together with. There daughter has a very complex syndrome known as Trisomy 18, she is missing her 18th chromosome. The government of Germany did not want to pay for the program because the statistics for the survival of this disease are very very rare beyond the second birthday. This child though is really beautiful and they have done a great job with her. She is 17 months old and still looks very much like a small infant. The german goverment told them that she would die anyway yet still she is here. We have it easy compared to them and their daughter has had the tube removed for one week and is still maintaing her weight. Yesterday we had a very nice afternoon going to the Advent Market in a very very nice part of town known as Hauptplatz. It is the main are where the town hall is located. They served hot wine and beer on every street corner. We needed a little English fix so we had lunch at an Irish Pub called Flan O'Briens. The buildings are just amazing. The architecture is breathtaking. We have learned that during WWII Austria was under the control of Nazi Germany. Although it was controlled by the German's the area was never bombed so the buildings were unaffected by the bombings. Currently, the law states that a mandatory jail sentence will be imposed for any person from here for abroad showing support of the Nazi German regime. We are fascinated by everything that we have seen. We also feel fortunate to be able to learn so much about other countries just by watching CNN Europe. In many ways Austria still is a bit of a culture shock. They are very very conscious about waste. For example today, I went to do a load of laundry at the home of the people who own the apartment that we are staying at and they did not have a dryer. So remember the old days when putting on your jeans was like putting on cardboard? Well that is what we can look forward to. I spent the morning doing laundry in the bathroom sink and hanging it on a drying rack. All part of the adventure. We start back on Monday with the program will write more then. Keep the emails coming. People have said that they are having trouble posting. I have made it so that you do not have to have a username and password, I hope this helps. Until tomorrow, keep the emails coming we love hearing from family and friends. All our love Tim, Michele and Alex

Day 4 at Graz

Hello,
Today we had our fourth day at the feeding clinic. Still no tube feeds yet and Alex grazes a little throughout the day. She is acting like she still has a ton of energy and has not really let this whole thing slow her down much. We went to a beautiful part of Graz today. We did not bring camera but will go back there and take many pictures. We found an authentic italian restaurant today where we had a great lunch. I think they put a egg in the middle of the pizza, it look kind of strange but it was delicious. We are learning more and more about local customs every day and have found a german translation dictionary which has helped out a lot. She looks forward to the train ride and walking around the city every day. Today we took Ernie and Elmo to play picinic. They have set up Alex alone in a room to start out. It seems like all the other children with there parents has become a little overwhelming for her so they are letting her ease in to the situation. Nothing here is about force eating is up to her and only her. They have a stricter philosophy though with what the child is offered to eat. Again, the believe if she is hungry enough she will find something that she finds agreeable to eat. The city of Graz is famous for is Advent markets during the holiday's. There is a big one on Sunday which we will probably go to. They really do sell chestnuts roasting on an open fire here. In fact we can get them at the train station where we get off the tram to go to the hospital. Will post more pictures. Thank you to everyone for all the words of support and encouragement. Love to all.. Tim, Michele and Tuni