Sunday, December 27, 2009
2009 is a very special year to us, because we discovered "Cuevas Medek Therapy". WOW what a year! It seems only a few short months ago that we celebrated the coming of this new therapy. Austin is really enjoying his preschool class. His friends in his class are so great and watch over him and his needs. These kids are so great to watch at that young age with there care and compassion. Austin participated in his Christmas program for the first time this year. He enjoyed ringing the bell and making his own song up with his noises. With my parents in town we enjoyed a white Christmas up in Flagstaff with family. Austin and Zach enjoyed sled riding for the first time and were all giggles and smiles, except for one minor accident on the hill, but glad to report no injuries. Seeing Santa this year was quite challenging for Santa. When Austin was asked what he wanted for Christmas, big brother Zach helped him and said "Austin would like a Baby Einstein DVD and to learn how to walk." What a great big brother. Santa gave us a smile and a nod. Austin still amazes us everyday with his mobility, sounds, eye contact, appetite and participation with activities. He loves to wrestle with daddy and Zach. He's become quite good at scooting, hopping and pulling to stand. He experiments with free standing within arms reach of objects and can stand independently for 30 seconds to 2 minutes. The joy in his face is so awesome. Daddy is so great at the routine of therapy for 30 minutes everyday. We have all been so excited to these advancements and watch Austin discover so many new things. We are planning a trip to Montreal, Quebec next June to meet up with Ramon (Austin's miracle therapist) to work with him for two weeks. Ramon travels during Chile`s winter months. Ramon was so amazed to see Austin cruising the countertop. He loved it. What a whole new world for Austin and he knows it. We thank GOD everyday for leading us to Ramon` and giving us the motivation to work the exercises with Austin daily. Who knows...up next we will be blogging about Austin's first independent steps and first words. Hard work and prayer will get us there.
Friday, November 6, 2009
As Ms. Jamie was getting Austin ready for a bath, she captured the moment that we have been waiting for....... We are so happy for Austin and all his hard work. What a great end to the week.
Make a Smilebox greeting |
Thursday, October 15, 2009
Day #8. Another great day here in Santiago. Austin did great. Words from Ramon's mouth..."WOW". Ramon did some experimental exercises with Austin today and he completed 100 percent of them. We were so proud of Austin. Austin's left side of the brain decided to join in the exercises today and now Austin is doing great with both sides now. Whenever you think you can't go any farther take a look at Austin....what an inspiration he is and doesn't even realize it. He is ready for his freedom and it really shows more and more each day.
Make a Smilebox slideshow |
Wednesday, October 14, 2009
Tuesday, October 13, 2009
Day #7. I can't believe how fast the time is going. Straight from Ramon...."Awesome Austin had an Excellente Day". Our champ did it again. Ramon has discovered something very interesting about Austin. Austin definately doesn't have a movement or muscle problem, it definately comes from the brain. Basically all neurological. The brain can be trained with repetition. Austin is so amazing and he is working so hard. We went to the park today and played for a nice reward. What kid doesn't like the park? I will post some more videos later tonight, when things calm done around here. Keep the prayers coming
Monday, October 12, 2009
Day #6. Therapy went very good today. Ramon stated again that Austin has received the message. Ramon said that Austin definately is ready to walk. Now with constant repitition of these exercises we need to make his brain do the work. Tomorrow we will start the home program exercises, now comes the hard part for me....the teaching. I am eager to see Austin have more freedom. Ramon said that Austin is at a critical state. Today seemed to easy for Austin and he was having fun. I hope that each day becomes easier for him and that he and his brain will see what freedom that can enjoy. I am going to try to post a link of news program that Ramon taped in Canada. It explains CME therapy much better than I ever can. It is a great news clip, so I hope it works.
http://news.globaltv.com/search/Walking+Tall/1992004/story.html
http://news.globaltv.com/search/Walking+Tall/1992004/story.html
Friday, October 9, 2009
What a great day to end the week with. Austin suprised even Ramon with the great work that he did today. What a great feeling it gave all of us and a good going home present for daddy. Austin and his brain worked really hard today. I will post video's so everybody can enjoy it has much as we did. We keep moving forward, and the key seems to be, "have no expectations for Austin" What an amazing little boy. We are sad to say goodbye to Bill today, but know in one week, we will all be together as a family again. Bill leaves here knowing that Ramon has the hands of God and that Austin is achieving something new every day and getting closer and closer to freedom of his own. I'm sure Bill will miss all the Chilean's asking him if he is an actor or professional sports player. I sure found it amusing. Can't wait to post more great achievement from Awesome Austin. Hugs and Kisses to everyone.
Make a Smilebox slideshow |
Thursday, October 8, 2009
Day #3. Austin had a crabby morning, but the afternoon session was great. Ramon had a talk with Austin's brain about receiving messages, and after a 12 minute battle in the morning, Ramon won. Needless to say, it made the afternoon session go much smoother. I will post a video so everyone can see all the hard work Austin is putting into his therapy.
Make a Smilebox slideshow |
Tuesday, October 6, 2009
Day #2, Austin had another successful day. WOW! As difficult as it is to leave our lives back home and come all the way out to Chile, it has always been worth it. As I said coming out here to Bill, "I'm not sure if I can do this again", therapy starts and I see the amazing things that Austin does, and I say to myself "I know I can do it again, no matter what it takes." Austin started off with the morning session walking with very little assistance (a small wrap around his chest area) for 18 steps. 18 STEPS!!!!!!! Wohoo Austin!!! After doing other exercises as a "get to know where Austin is session" he was able to balance after many different aerial movements. Austin's brain has logged those previous messages and is moving on!!!! This afternoon, Austin was able to do many different balancing exercises with either a bilateral ankle hold, or one or the other or none. If you don't remember from last time, an ankle hold is Ramon's goal with each child, that to him means good things. Austin biggest success today was being able to balance on boards slanted all the way from one board high to five, all with the ankle hold or none at all, for up to about 2 minutes. Not an easy feat if you think of it, or even try it on your own. Perfect balance. Here's to another great day in Chile, and god willing great sessions tomorrow. Thanks for following Austin. Big Hugs!!!
Monday, October 5, 2009
Day #1, Awesome Austin is at it again. What a great first day Austin had. Ramon was quite impressed with how Austin was doing for the most part. Some things, well Austin just has a stubborn brain. I guess I'll take credit for that part. Overall a great two sessions. Austin was showing Ramon alot of his new walking skills and quite impressively I might add. I hope I don't jinx the therapy, but looks like we are going to have a great two weeks and hopefully come home farther ahead. We were really proud of Austin and I guess our therapy sessions at home with mom and dad cme have done some good. We are doing something right. Bill's reward.....NFL este noche. Yes, monday night football. We left him at Ruby Tuesdays to have a fun night. More blogging tomorrow.
Sunday, October 4, 2009
We have arrived in Chile safe and sound. We had two great flights, although long Austin did fantastic on both of them. Moved into our new place for the next two weeks that we are sharing with our friends from Arizona. All is going well so far. Weather is nice and cool. I'm actually cold for once and don't remember the last time I felt like an frozen pop than a melted one. We went grocery shopping today and stocked up on some essentials for our time here. The great benefit to shopping on Sundays....all the samples they give out including diapers, food and the one we liked best.....the shot of pisco sour, a type of alcohol here. Right as you grocery shop. We felt more like we were having a night out as a dj played 'brick house' and 'it's ladies night, oh what a night' than doing our shopping. Needless to say, that has been the entertainment for the day. We are going to get a good nights sleep for therapy tomorrow. Our first session will be at 11 am, same time as our east coast peeps, 8 am for all our west coast peeps. Hope all is well with everyone. Pray Austin has a successful two weeks. Hugs and Kisses to all!
Wednesday, September 30, 2009
Here we go, trip number 2 to Santiago. We are leaving Saturday October 3 and coming home on Saturday October 17. We are really looking forward to our trip. Austin has made alot of progress over that past 6 plus months. Hope he struts his stuff for Ramon. Watch for daily updates while we are there. Keep us in your thoughts and prayers. Especially Austin for all the hard work he has ahead of him.
Thursday, September 3, 2009
Austin is back in school and has had a wonderful two weeks so far. His teachers and therapists have commented on how well he is doing and how much he has changed since the end of last school year. This will be his last year of preschool, then he will move on to Kindergarten. Austin has been moving around alot more on his own, not quite cruising yet, but definately adapting to what his body his allowing him to do for himself. He has mastered standing up and getting his own sippy cup from a table, and has accomplished being able to stand and hold the cup and drink from it all on his own. We are still working on the setting it down nicely phase. He enjoys climbing on us and his brother and thinks it is so funny. He communicates still with no words but uses many more sounds like high pitches, groans, moans and crying. His eye contact has approved greatly and has turned into a better form of communication for him. He was introduced to a walker and a bronco walker that we now have at home. It has allowed him the freedom to move about more without us having to hold him up. With the bronco he his straped in, it has handle bars for him to hold and a seat when he gets tired (which Austin soon realized was there, and takes full advantage of). He manages to move himself back and forth and loves the walls! It is great to see him have some freedom. We are still working on his exercises from Chile. We are going back in October and will be there for two weeks this time. We are excited and nervous at the same time. We hope the therapist won't be dissapointed in us! Austin loves to take toys out of his toy bucket now and throw them all over the place one by one. It is nice to see him take interest in things like that. He seems to be eating much better lately and even eating snacks at school with the other kids. Sometimes it seems like he wants to eat every hour and a half. He has gained 3 pounds since January. I think it is all in height though!!!! Although Austin is making such great accomplishments it seems that we are stuck in time. I miss talking about his milestones like other moms, I miss not being able to have him run out to me with open arms after school like the other children, I miss him not asking for snacks or learning new words. It makes me sad sometimes that after 4 years, almost 5 now, I thought we would be so much further along. I am tremoundsly grateful for all of Austin's accomplishments but also extremely frusterated at the same time. Every day is a new day and I look more at what Austin has accomplished than not, but there is still that part of me that want's him to move and do like all the others.
Thursday, June 25, 2009
I apologize for being a blogging slacker. We are happy to report that Austin has been keeping us busy in great ways!!! Where to start.....Austin has been doing some great things over the past month or so. First of all he really likes to play with big brother Zach now. It brings tears to my eyes sometimes, because it makes me so happy to finally see that. We have waited a long time for this, and so has Zach. He gets so excited when they wrestle around together and Austin will let Zach help him stand. It is so fun to watch. Zach even tolerates Austin banging on him mostly in a playful manner. We continue to do therapy on a daily basis with Austin in one way or another. Austin really enjoys when we get his green therapy mat out. He hops over to it and does a four point stand. We take it that he understands what is happening and that he is ready for business. The exercises are challenging for all of us, but we manage to get through them with a group effort. Austin is taking steps, some really good, others very wide and all over the place. But......he is taking steps mostly with a two hand hold. He likes to pull to stand all day long, and cruise the corner of the couches from one to the other. He likes to get his sippy cup off the table and stand up and hold it with a two hand hold and drink from it. What a major accomplishment for him, and he knows it with that big smile and blue eyes. He has become so playful it is actually fun and exhausting at the same time. Austin is in extended school year (ESY) for one month this summer and is really doing good. He goes for one and a half hours Monday-Thursday at a special needs school. His teacher is the same teacher he has throughout the school year. He loves the adaptive playground and actually gets really mad when they put him back in his chair. He seems to enjoy the smaller class size and even eats his snack every day there and drinks his juice. I guess this is where reality has sunk in...Austin's needs are truly met at this special needs school. No more denial for me, time to face the hard truth. Austin has become more verbal and loves to make different sounds. He really seems to understand me when I make monkey sounds. I can't figure that one out, but it really gets his attention. His big baby blues just stare at me. Austin's eating is a little more consistent. He still needs to gain more weight, but for now he is eating a little more than usual. We are still planning on going back to Chile in October. I hope to go then to share an apartment with my friend Beth and her daughter Mia from Phoenix. Time seems to be going by so fast for us. I can't believe it is already going to be July. Austin had some genetic testing done and all the results came back normal. They tested him for Rhett's syndrome, P ten gene and a chromosal analogy. All chromosomes are intact and no deletions noted. That's all good to know, now back to the drawing board. We will see her again in October. I will try to get some video of Austin walking so all can see with your own eyes. Keep praying for Austin and his daily journey. It's working. More later.
Tuesday, May 12, 2009
Tuesday, April 7, 2009
Finally we are back into the groove of things. It took Austin a whole week, but I believe he is finally back into his routine. His class and teachers were so excited to see him back. Austin's physical therapist here in Arizona noticed a difference in Austin at therapy this past Monday. In a positive way. She was able to work with the OT in his session on Monday and did some exercises with Austin that she wouldn't have thought of a month ago. Austin did quite well, and everyone was happy.
Bill did some "home program" exercises with Austin on Saturday and said that Austin was laughing through them. We haven't quite started our routine yet, but are slowly "getting with the program!" We ordered his equipment and hopefully will have it next week. Most of Austin's therapist's noticed some good changes in Austin from physical to better eye contact and better communication skills. We have noticed at home that Austin has a desire to want to eat more!!! About time. Hope it continues. If any of you bloggers out there can direct me how to put pictures on Austin's website, I would be so grateful. I would like to put them in a slideshow format if possible!!! Thank you again to everyone for making Austin's trip possible. We are so fortunate to have all of you in our lives.
Bill did some "home program" exercises with Austin on Saturday and said that Austin was laughing through them. We haven't quite started our routine yet, but are slowly "getting with the program!" We ordered his equipment and hopefully will have it next week. Most of Austin's therapist's noticed some good changes in Austin from physical to better eye contact and better communication skills. We have noticed at home that Austin has a desire to want to eat more!!! About time. Hope it continues. If any of you bloggers out there can direct me how to put pictures on Austin's website, I would be so grateful. I would like to put them in a slideshow format if possible!!! Thank you again to everyone for making Austin's trip possible. We are so fortunate to have all of you in our lives.
Thursday, March 26, 2009
Days 18 & 19 of therapy. Lots of learning to do, and after this, looks like Bill can earn his CME certificates one and two. He is doing very well with the exercises with Austin. Very impressive. Ramone stated today that the time he has spent with Austin has gone by very fast. He said that Austin is not quite ready to be walking yet, but his brain is receiving the signals, and with every day he will get closer and closer. He sees great improvement in Austin since we first arrived three and a half weeks ago and he says we will see more and more over the next few weeks. This has been such a great experience for us. We have learned so many new things about this wonderful type of therapy called CME and the potential that Austin and his brain truely have. We have experienced such a neat culture and made some great friends while here. The future is going to be so great for the Benschneider Family with Austin's new found abilities. We are tentatively scheduling our next session for Austin in Chile for October 2009, this time however, we will only be staying two weeks instead of four. This is not the end of Austin's journey, just the beginning. I will continue to blog and keep updates going and hopefully get some videos on here (one day!). Thank you so much to everyone for their love, support, prayers and encouragement, It has made our trip a great success. We will be leaving for home on Saturday the 28th at 11 pm at night. We will get to LA on Sunday morning at 0740. Looking forward to being home again and seeing Zach.
Tuesday, March 24, 2009
Days 16 and 17 of therapy. Let me start off first by saying that are weekend was very nice although Austin picked up the "dreaded" cold somewhere, and in our last week here, we now are dealing with that!! Bill arrived on Sunday and it is so great to have him here with us. It would be so nice to have Zach too, but we are very happy to be so fortunate to be able to have Bill join us. We decided to do a winery tour on Sunday, but we forgot to ask Austin how he felt about that, and low and behold he let us know his thought when we arrived there. It was a nice scenic car ride there, and so beautiful when we got there, but Austin was having nothing to do with it. Cried non stop from the minute we got there, to the exact minute we left and entered the car that had been waiting for us. It was a nice tour for me, since Bill was such a great husband and let me do the tour while he sat with Austin trying to enteratain him for an hour and a half. I did bring him out a glass of wine everytime we were given one, and then at the end we were able to eat some cheese and have a glass of wine together, as we tuned out Austin (knowing it was hopeless at this point), and let everyone else find a way to deal with it on their own.
Therapy on Monday was okay but again, a very crabby morning for Austin. After the first session that Bill saw, he became a believer in the CME and had a very good first impression. Today we started learning our home program routine and will learn more and more everyday this week to prepare us for at home. Ramone is making a video for us and writing out each exercise so we won't become overwhelmed. When I asked him when would he like to see us back he said, five to eight months after we leave. If Austin would complete some of the exercises befor five months (that is master them) then we need to send him a video and he will give us some new exercises over the phone. Such a great guy he is, and the confidence he has in us. I hope we don't let him or Austin down.
We went on a city tour today and saw some great sights and had a great day. Austin enjoyed this outing, maybe it was the ride on the double decker bus with the fresh air that he liked. Have another therpay this afternoon, then dinner with our friends from Canada. Will fill you in more tomorrow.
Therapy on Monday was okay but again, a very crabby morning for Austin. After the first session that Bill saw, he became a believer in the CME and had a very good first impression. Today we started learning our home program routine and will learn more and more everyday this week to prepare us for at home. Ramone is making a video for us and writing out each exercise so we won't become overwhelmed. When I asked him when would he like to see us back he said, five to eight months after we leave. If Austin would complete some of the exercises befor five months (that is master them) then we need to send him a video and he will give us some new exercises over the phone. Such a great guy he is, and the confidence he has in us. I hope we don't let him or Austin down.
We went on a city tour today and saw some great sights and had a great day. Austin enjoyed this outing, maybe it was the ride on the double decker bus with the fresh air that he liked. Have another therpay this afternoon, then dinner with our friends from Canada. Will fill you in more tomorrow.
Friday, March 20, 2009
Days 14 and 15. Austin has been doing great, Yesterday he stood for 600 numbers on his own, which is equivalent to about 5 minutes. Way to go Austin!!! I am a bit behind in my blogging, but for good reason. We have been out celebrating with our new friends here in Chile, so party time for Erika and Austin. We can't have all work and no play!!!! It has been well deserved for both of us. It is so nice to have a cocktail hour. Austin ended the week on a good note and did well in all his therapies the past few couple of days. We are looking forward to Bill coming and joining us on Sunday, yes Sunday!!! We are so excited, well, I know I am. Time seems to be flying now and just think....after three weeks, we are now down to our last week. The next month at home will be just as important to continue with the therapy that Austin's brain has been shown. We plan on having a very busy month, then hopefully if will just get easier and easier for all of us. Wishing a good weekend to all.
Wednesday, March 18, 2009
Day 13. Well either I was really tired yesterday or getting old and senile, but I can't remember how last nights session was.....sorry. It must have just been "okay."
Today started off rough this morning for therapy. After the first session, Ramon's words were......"I hope we have a better afternoon session", not something I was hoping to hear. Austin faught so hard this morning with Ramon. He actually was fighting against him. Ramon's response to that was...."In my 39 years of working, I have never had someone fight me this hard, especially someone with so much potential." He also told me not to worry, he thinks out loud and he wants to explain things to me, but this only makes him think harder, and now needs to figure out how to overcome the power Austin is giving. Session two went very well...who would of thought after Austin fell asleep literally 5 minutes before the therapy session was to start. He was sleeping when I took him in. Ramone did a little acupuncture technique on Austin and instantly Austin was wide awake. How cool to see. Austin then had a great session. He did so good and cooperated very well. No fighting from the brain this time or Austin. I was so glad to see that since Ramon's thumb was hurting him so bad, and Austin was going to be his last client for the day. Glad to see Austin and his brain are considerate of others. The story of the day. More later.
Today started off rough this morning for therapy. After the first session, Ramon's words were......"I hope we have a better afternoon session", not something I was hoping to hear. Austin faught so hard this morning with Ramon. He actually was fighting against him. Ramon's response to that was...."In my 39 years of working, I have never had someone fight me this hard, especially someone with so much potential." He also told me not to worry, he thinks out loud and he wants to explain things to me, but this only makes him think harder, and now needs to figure out how to overcome the power Austin is giving. Session two went very well...who would of thought after Austin fell asleep literally 5 minutes before the therapy session was to start. He was sleeping when I took him in. Ramone did a little acupuncture technique on Austin and instantly Austin was wide awake. How cool to see. Austin then had a great session. He did so good and cooperated very well. No fighting from the brain this time or Austin. I was so glad to see that since Ramon's thumb was hurting him so bad, and Austin was going to be his last client for the day. Glad to see Austin and his brain are considerate of others. The story of the day. More later.
Tuesday, March 17, 2009
Days 11 and 12 of therapy. I apologize for the late blogging, but Austin and I are so tired. Therapy has been going well. Nothing really great to report, but Austin is still cooperating very well. Austin had the opportunity to have therapy with a student who is doing her cme level three from Brazil yesterday. I was excited for a couple of reasons.....1. I wanted to see how Austin would respond to someone other than Ramone and 2. I wanted to see how difficult it was going to be for me to do the therapy. Right from the start, Austin gave the poor student a hard time. As I was feeling sorry for her, I started to feel worried for myself....if she was having such a difficult time, what is going to happen for me? Ramone ended up taking over for her, who's going to do that for me? Bill and I make a great team and together we will be able to do it. I know we will. Hope to post some pictures soon and maybe even a video clip of Austin working hard. Just need to find the energy to figure it out. Off to session two in about 1 1/2 hours, will let everyone know how it went.
Saturday, March 14, 2009
Day 10 of therapy, a day late. Austin's intensive therapy sure lives up to it's name. I feel the intensity for him. Last day of week two went really well. One of the first exercises Austin did on the second session of the day, amazed us all even Ramone. To make a long story short and without the video to show it, Ramone put Austin in a standing position after performing a cool in the air twist with him. When Austin extended his body in the air (a reflex babies have at the age of about 9 months) he then set Austin on his feet. Austin performed a 500 count stand independently. Five hundred counts in this therapy amount to about four minutes time. It was a record for both Ramone and Austin. Austin's brain is remembering things. What a great accomplishment.
As a treat for Austin and I, we were invited to dinner by another parent and Ramone's daughter. What a great evening, well for the most part. The company was great, Austin on the other hand had a complete break down the whole time in the restaurant. Thank god the parent that we went with had been at this place a million times since she lived in the hotel for 10 months and they knew her and her daughter very well. The staff was very sympathetic to my situation, I on the other hand was about to die. I had ZERO control over Austin at that time. I did not come prepared for dinner out, which was my problem. If I would have brought the DVD player, (our babysitter)we probally would have been fine. I've learned a lesson....never travel without it!!!! Having a spare pacifier might have helped to, since Austin completely chewed through the one he had in his fit of rage. Everyone understood but me. Although I had some issues with Austin, it overall was a nice dinner (eating with one hand and pushing the stroller back and forth with the other). The company was great and I made some new friends, who by the way are great resources of information and they speak American.
Austin and I are going with some friends new and old out and about today, wtih dinner later tonight (dvd player charged, and the extra stinky binky in the bag). Tomorrow our usual routine of Starbucks and people watching at the mall. Hope everyone has a great weekend.
As a treat for Austin and I, we were invited to dinner by another parent and Ramone's daughter. What a great evening, well for the most part. The company was great, Austin on the other hand had a complete break down the whole time in the restaurant. Thank god the parent that we went with had been at this place a million times since she lived in the hotel for 10 months and they knew her and her daughter very well. The staff was very sympathetic to my situation, I on the other hand was about to die. I had ZERO control over Austin at that time. I did not come prepared for dinner out, which was my problem. If I would have brought the DVD player, (our babysitter)we probally would have been fine. I've learned a lesson....never travel without it!!!! Having a spare pacifier might have helped to, since Austin completely chewed through the one he had in his fit of rage. Everyone understood but me. Although I had some issues with Austin, it overall was a nice dinner (eating with one hand and pushing the stroller back and forth with the other). The company was great and I made some new friends, who by the way are great resources of information and they speak American.
Austin and I are going with some friends new and old out and about today, wtih dinner later tonight (dvd player charged, and the extra stinky binky in the bag). Tomorrow our usual routine of Starbucks and people watching at the mall. Hope everyone has a great weekend.
Thursday, March 12, 2009
Day 9 of therapy. Wow already day 9, where has the time gone. We are almost done with our second week here. Austin had a good day today. This morning he had an obstacle he had to go through, and all I can say is what a fun thing to watch. Austins goal was to step into each box, one foot at a time of course. They were lined up 2 side by side in a row of three. From what I understand it is an autonomatic response that every child has by the age of I think 9 months. Austin did it, stepped in all six boxes in sequence on his OWN! It was so exciting to watch his little legs and feet do all that walking on their own. I wanted to see it over and over again. That was the highlight of my day. There were alot of balance exercises today that he did, but none as exciting as the boxes. I hope to show it on his blog when I figure out how to download it.
We ventured to the grocery store again today. Not sure what it is, but when we go in there, security follows me around for the first 5 minutes, then at check out there is always, always, always one standing at the end of the check out. Not sure if I should look at it as extra security for us or big insecurity on there part. Now that Austin can do more maybe he looks big, bad and dangerous.
Looking forward to what the last day of week two brings for Austin.
We ventured to the grocery store again today. Not sure what it is, but when we go in there, security follows me around for the first 5 minutes, then at check out there is always, always, always one standing at the end of the check out. Not sure if I should look at it as extra security for us or big insecurity on there part. Now that Austin can do more maybe he looks big, bad and dangerous.
Looking forward to what the last day of week two brings for Austin.
Wednesday, March 11, 2009
Day 8. Well had to wake Austin up yet again for that early therapy apppointment. Didn't make for a good start. Ramone doesn't understand why Austin's brain has received the messages, but in week two is still not wanting to use them to walk. All his exercises are good/great, however when it comes to putting them all together to do the walking more independently it's just not clicking. He said he is not worried, just puzzled, and will make him think harder how to correct it. Again....Austin is a mystery. Words we are all to familiar with. Starting next week we will have a 10:15 start time, so maybe that will make a difference with a better/longer nights sleep. Ramone agrees and says it's worth a try. Good afternoon. Austin was in great spirits, still very mad with exercises but good mood. Worked hard and actually did an exercise that he moved his legs in a walking motion on his own. It was great to see.
Tuesday, March 10, 2009
Day 7 of therapy. What a great morning session. Austin worked even harder this morning being mad. Austin was able to step up onto blocks from the mat with just the ankle hold and then step off the other side in the same way, and then stand freely without any hold at all. WOW is exactly what Ramone had to say. His responses this morning were quicker than other days. Hope we have a great afternoon session too. Austin had a great afternoon session. Ramone did many new exercises with Austin, and Austin suprised him on every one. Great potential in there, showing it more and more every day. Would have never thought with the restless, short night we had that the day would turn out to be so fabulous.
Monday, March 9, 2009
Day six of therapy. Well, I have to say, last night was the first normal night we had since we arrived last Saturday. With that said. Austin had a good day at therapy today. Ramone was very happy with Austin's walking today and the way the brain remembered things, however not so happy with the response the brain is making to get up to do the walking. I guess one out of two aren't so bad. Austin had a great afternoon session, and was able to walk across the entire room, with just the ankle hold. Excellente!!! Hopefully in the near future will be the one hand hold, then obstacles for walking. Go Austin, Go Austin, Go, Go, Go Austin. Ramone knows the brain is receiving the message, now it just needs to accept it and keep moving forward.
Sunday, March 8, 2009
The weekend is almost over, and tomorrow starts week two of therapy. I hope we have a great week like last, if not better. It may not be starting off too well. I was playing with Austin, and I pulled a muscle in my back. Thank god I brought the medicine I've been given before for back problems. Lets hope it kicks in fast. We had a great weekend. Our friend Oula took Austin and I with her and her son to visit some of her friends here. What a great experience. We were welcomed with open arms. It was nice to get out and experience some of Santiago. Today Austin and I went to starbucks, and then to the park. It was a beautiful day, but a little warm. Nice breeze though. We are looking forward to another week of therapy and more progress. Will keep everyone posted. Thank you for following our journey!
Friday, March 6, 2009
Day 5: Excellente week, as Ramone said after our last session today. Wish Austin and I felt that way. It has been a very long week for us, but have to agree with Ramone that it was a very productive week in the therapy department. Austin and I are homesick and both miss the comforts of our own home, and of course our family, friends and routines. We know that this is a small sacrifice we need to make for the next month so Austin will have a chance at a new life. It is worth it!! Austin worked alot on balancing exercises today and was so scared he would shake at times, but his brain was accepting the input and putting his body to work. I wanted to cry and chant a cheer for Austin all at the same time. We hope to do some sight seeing tomorrow with anther family that stays at the same B & B as us. We are excited to do something other than therapy. What a nice break. First week done and doing well.
Thursday, March 5, 2009
Day 4: Well it was a good/bad day for Austin and I. I beleive we are sleep deprived, hence Austin's fussiness. I hope it is that and not the beginning of an ear infection or something like that. Although I was assured by my friend Oula here that the doctors are very good if I have to take him. Lets hope it doesn't come down to that. Austin was very mad again at therapy, but him and his brain cooperated their best. Ramone said he is happy/satisfied with 75 percent of the exercises Austin did today. He said he is sending Austin's brain the messages and it is up to the brain to accept them or not! I'm rooting for the acceptance part personally. Austin did alot of exercises today with just the ankles being held, and sometimes only one needing to be held. Yeah!! That is very exciting. Ramone beleives that if the child can cooperate with just an ankle hold, the brain is doing 100 percent of the work which means... the ability to be able to walk on his own. Yeah Austin!!! Keep going. You can do it! The cheer of the day when we are at therapy. We went to the park today and walked around. Austin wanted nothing to do with sitting on the grass, so we walked and watched the soccer players and the boys riding their BMX bikes on their ramps. When we came back with went with our friends to a new mall to look around. That is our adventure for today.
Wednesday, March 4, 2009
Day three of therapy.....Austin had a very hard day, he never cried but he had alot of frusteration and anger at therapy, he did many new exercises today, and wasn't quite sure that he liked a single one of them. It was apparent that Austin's little brain wasn't sure what to do, whether to accept the exercises or fight against them. Ramone has a way with him and thank god for the gift he has to work with children and their immature brains. We ate dinner outside tonight, a real healthy meal of McDonalds. Thanks to my friend Beth who came here, she passed on some good advice. It was very easy to order, numero uno with coca cola light!!!! At least I'll be eating. We sat outside by the fountains and Austin really enjoyed watching the water going up and down. It is so fun to watch him smile and laugh at such simple things. Our living arrangements have become a little better. We got a big comforter for Austin and now he can sit on the floor and climb onto the bed. It's the little things that make the bigger picture so much better. So hopefully he will tire himself out so he goes to bed earlier than between 11pm and 2am. I realized today that every where I go and they are playing music, whether in the grocery stores or past houses, the music is American music. It is so funny watching them move to this music and sing it, and then if you try to talk to them in English they don't understand! That's our adventure for today.
Tuesday, March 3, 2009
It was another big day for Austin, day two of therapy. Austin's first session went well. He cried alot more than the others but worked through it with great success. On his second session of the day, Austin was all smiles when he saw Ramone!!! Ramone started off with a very difficult exercise where he had Austin standing on boxes, but the boxes where turned where it was just the narrow sides and Austin had to balance himself with just his ankles held, however Ramone said that is like standing on his own. He was very, very impressed how long Austin was able to do it. It was to the count of 300 where I think Ramone calculates that at 150 seconds. Another one of Austin's exercises was to be able to step out of a box using one foot a time. On the first attempt Austin was successful, by the third repetition, Austin was doing it in seconds. Austin had alot of challenges this evening but proved yet one more time that his brain is smart,and it is catching on. Austin truly is working on his own and his responses are not just autonomic, well some still are, but what progress we have made in two days. Every session gets more exciting!!!! It's so nice to see Austin cooperate and not just cry for a whole session of therapy!!! He doesn't even need to be put on a swing! Again at the end Ramone commented on what a great session Austin had, and how he has such great potential.
Monday, March 2, 2009
Austin had his second session with Ramone this evening, and all I can say is WOW. Austin didn't cry, but did fuss and whine some, but did very well. He was even woken up from his nap that he took on the way to the office, and he still cooperated. Seems like Ramone does exercises in sets of three. By the third set Austin has mastered it. He is doing it with his vestibular system and making Austin's brain do the work. Austin has a really smart brain, wish he could have been made to use his brain like this a long time ago. Austin was able to stand on his own for over one minute tonight. That is much better than the 18 seconds we have had at home. All I can do is smile so big when I see Austin working. It is amazing the potential he has and the talent Ramone has to bring it out. On another note....who would have ever thought that I would have a hard time finding something to eat? Not me. However the language barrier is really taking it's toll. I might actually lose that weight I've been talking about for so long. We are doing well. After seeing how well Austin does I anticipate the next session. We'll keep you posted.
Austin had his first therapy session this am. Was actually his evaluation. First let me say that Ramone is everything plus more that all the other moms say. His energy is amazing. Austin actually showed off pretty well for Ramone. Ramone said that Austin has great potential. Austin is going to have to work really hard, but it will all be worth it. This trip is worth everything that we (and everybody else who helped us)worked hard for. I know great things are going to come out of it. Austin actually walked with a one hand hold for about 4 steps. He didn't like it by any means, he felt very unsure of himself, but he did it. Can't wait to update later with more good news.
Sunday, March 1, 2009
Austin and I ventured out on our own today. What a great day we had. We started off at the park which was so beautiful. We were surrouded by the Andes mountains and lots of families playing with their children. it was a nice day out probally around 85 degrees with a light breeze. After that we ventured to the mall and walked around. Payed for my first transaction in pesos today. I thought I did very well. I was so proud of myself. I ordered by Te verde frappachino. The cashier then asked me where I was from, when I told her she said "Grand Canyon". I guess I need to work on the accent part. It must have given it away I wasn't from Chile. Went to Tony Roma's for my dinner and saw an English menu, thought I was in luck. When I went to order nobody there knew English. Go figure. Pointing was my savior!!! We start therapy tomorrow at 7:45. I'm very excited and I think Austin is going to love to be able to move around in a bigger area again. I think I'm getting a hang of this Chile thing, and I hope it keeps getting better.
Saturday, February 28, 2009
We made it to Santiago. Our flight actally went really well considering the extra DVD battery I brought was supposed to last 8 hours and it only lasted 4, and the benadryl I gave Austin finally kicked in the last hour and a half of the eleven hour flight. The crew was very helpful with helping me on and off the airplane. We got into the airport and had to get our visa. Well, that turned into huge mess. To make a long story short had to be escorted by police through the airport in order to try to pay for my visa. Credit cards weren't working and silly me thought I whould exchange my money before leaving the states for peso's and they wanted american money in Chile. Right outside of the airport was quite interesting.....lots of shacks with broken roofs, burning garbage and lots of packs of dogs. Once we got to the B & B the owner was very nice. Austin and I are in a room shuffle at the moment, won't be in our permanent room till Monday, needless to stay when Bill arrives we will be switching to a new home away from home. Much closer to the clinic and something bigger to fit the three of us. Went exploring With Oula and her son Yussef today. We took a walk to the Marriott to see where Ramon's office was, walked around the mall and the huge area of resteraunts surrounding it. Got to see a Home Depot, Mcdonalds, Ruby Tuesday, TGI Fridays, Tony Roma's just to name a few. Not doing very well on the whole language thing, hopefully it will come with time. That about sums up our first day here. Looking forward to Monday to start therapy, and really looking forward to March 22 when Bill comes in.
Thursday, February 26, 2009
Well, it's 0300 in the morning and big surprise.....I can't sleep. My nerves have got the best of me. My stomach is in knots. We leave tomorrow for Los Angeles and on Friday Austin and I take off for our journey to Santiago. I have so many emotions now. I am very excited, nervous and scared all at the same time. How can that be? I know this is going to be a great experience and that Austin will gain so much from it, and me too, so why am I so scared? To distract myself, I've been looking through some old papers that I have lying around. I found a poem that often describes our lives and I thought I would share it. It is called Welcome to Holland by Emily Pearl Kingsley.
"I am often asked to describe an experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this":
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo "David", the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland" you say? "What do you mean Holland? I signed up for Italy!, All my life I've dreamed of going to Italy."
"But there has been a change in the flight plan. They've landed in Holland, and there you much stay."
The important thing is that they haven't taken you to a horrible, filthy place, full of famine and disease. It's just a different place. So you must buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a little while, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, every go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
This poem is so true. If it hadn't been for Austin, we may never have met some of the wonderful people in our lives that we have now, we may never have gotten the chance to go to another country, like Chile, we may not have experienced the bonding we have as a family, and we would have not had the chance to meet and raise such an inspirational, hard working child like Austin. And Zach is special too in his own ways. He has learned many different things that many six year olds probably don't know. He is a great helper, understanding and caring big brother and son.
I feel many people can relate to this poem in many ways, not just families with a disabled child. It can put a new perspective of the way we think of things. I know it did for Bill and I.
I'll let everyone know when we arrive in Chile. Thanks for all your support. We are very blessed to have such special people in our lives.
"I am often asked to describe an experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this":
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo "David", the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland" you say? "What do you mean Holland? I signed up for Italy!, All my life I've dreamed of going to Italy."
"But there has been a change in the flight plan. They've landed in Holland, and there you much stay."
The important thing is that they haven't taken you to a horrible, filthy place, full of famine and disease. It's just a different place. So you must buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a little while, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, every go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
This poem is so true. If it hadn't been for Austin, we may never have met some of the wonderful people in our lives that we have now, we may never have gotten the chance to go to another country, like Chile, we may not have experienced the bonding we have as a family, and we would have not had the chance to meet and raise such an inspirational, hard working child like Austin. And Zach is special too in his own ways. He has learned many different things that many six year olds probably don't know. He is a great helper, understanding and caring big brother and son.
I feel many people can relate to this poem in many ways, not just families with a disabled child. It can put a new perspective of the way we think of things. I know it did for Bill and I.
I'll let everyone know when we arrive in Chile. Thanks for all your support. We are very blessed to have such special people in our lives.
Tuesday, February 24, 2009
We have been blessed with so many families and organizations helping us to fiance Austin's trip to Santiago. A big Thank you to the Long Family, Joi and Sheila who helped set up fund raisers through Asian American Karate. Thank you to all the dojo family and friends who helped contribute to the cause. We are so lucky to be part of such a great dojo and have these wonderful families in our lives.
We are looking forward to going to Chile. We will be leaving Thursday February 26 to drive out to Los Angeles, and on Friday we will depart for our 11 hour plane ride to Santiago. Please keep us in your thoughts and prayers. I will update everyone once we arrive and then periodically there after.
Monday, February 23, 2009
My family held a fund raiser in Cleveland this past weekend. As a surprise, Zach and I flew in. I'll never forget the look on my mom's face when she opened the front door and saw us standing there, kind of like the look Zach had walking outside to the car and feeling the cold air!!!! What an incredible night we had. We cannot say thank you enough to everyone who helped put the fund raiser together, from collection of donations to countless hours of organization. Thank you to family, friends and friends of friends for their support and gracious donations throughout the night. We hope everyone had a great time. We are looking forward to our upcoming journey to Santiago.
Tuesday, January 20, 2009
We met with Austin's geneticist today. What a wonderful doctor she is. You can really tell the compassion she has for her job and how dear she holds Austin's well being to heart. We like how she said to us....."when we find his diagnosis." What a great team Austin has. We went over his MRI results. There was no abnormalities of the brain. There was a small arachnoid cyst found by his cerebellum, which may or may not play a role in balance problems for Austin. It has been there since his last MRI with no changes. So........back to the drawing board. Austin will undergo a new set of blood tests here in the next couple of weeks to test for different genetic disorders. Are fingers are crossed.
Sunday, January 18, 2009
We had a fundraiser for Austin today at Vistancia Golf course. Where do I begin.....First of all the weather was fantastic, probably around 74 degrees, the turn out was awesome. We had a very successful event for Austin. A special thanks to Vistancia, Shane, Joey and Joe for all there efforts to put this together. We would also like to thank everyone that came out to participate, donated and sponsored holes. We are so lucky to have so many wonderful friends and family. Congratulations to all the winners and we hope you had a wonderful day. Thank you for all the support.
Bill, Erika, Zach and Austin
Bill, Erika, Zach and Austin
Subscribe to:
Posts (Atom)