"look at all the presents"

"Oh My God... It's Spiderman"

Christmas Day!!!

WOWW!!! What a great morning... The boys slept until 7:30! It's a Christmas MIRACLE! The only reason Andrew got up was because Matthew was up in our room with a fever. He was just miserable. I got up to get him some tylenol and as he sat in the chair in the kitchen he was falling asleep... he obviously did not feel well at all.

Sean woke up Andrew and whispered to him that Santa had came and he hopped out of bed and flew into the living room... His eyes were HUGE. He just could not believe how many present Santa had brought. There is a video of him on the Picasa Web Album showing his commentary on the presents... very cute, check it out. It's labeled “that's a lot of presents!”

Matthew was not feeling well so he was not as excited.. poor little guy. But Andrew was extremely excited! He was very patient about waiting until we got our coffee before tearing into his gifts. After opening about 20 packages with just clothes, it was obvious that he was getting disappointed. Then came the good stuff. He got lots of spiderman and cars toys. But he was getting anxious that he would not get his most wished for gift... then we came to the end of the presents. It was the "best for last" gift. You HAVE to check out the video of his reaction.... it was a Black Spiderman costume. He literally SCREAMED he was so excited. It was the best reaction that I have EVER seen! So that was his Favortie gift.
The boys also loved that we got them the Leapster Max with gift certificates that their Aunt Wendy & Uncle Jeff sent. That was a huge hit too. We weren't sure if Andrew would "get" the concept of the games or if he could navigate the controls, but it's clear that his fine motor and cognitive skills have improved so much that it seemed much easier for him to play. We also got the "cars" game for it. We're so glad that it is something that he is interested in. Something that can grow with him as he learns more. He'll be able to use it until 5th grade because there are games all the way up to that age.

The rest of the day consisted of trying to clean up, organize and put together all of the toys. In all, it was a GREAT Christmas, even for us... I (or WE, I should say) got a new laptop, so now hopefully it will be easier to update the blogs more often. Sean got his new Golf Bag, which he needed so badly. And we both got a variety of little gifts and the Pottery Barn "Daily System" for our much needed organization.

We hope you all had a Merry Christmas and have a Happy new Year. And be sure to check out Matthew's blog to see his Christmas experience. http://roarslikealion.blogspot.com
Here is a direct link to the Picasa web album http://picasaweb.google.com/thefavilles/Christmas2007

PS... We will be starting the "Faville Family Blog" soon to post our Family blog. This will be more "daily" than Andrew & Matthew's blogs. We will be using the boys blogs for more personal posts for them. The family blog will be more of a daily journal. We'll keep you posted on the progress.

Christmas Eve.

Christmas Eve was spent finishing up last minute wrapping and trying to get the boys to take a nap... that didn't go so well. They were just so excited about Christmas. We went to "Nana & Grandpa's" house for dinner of a special carrot, raising & celery stick salad, Gazpacho soup, King Crab legs, twice baked potato and Andrew's favorite.... Filet Mignon. The boys finished eating and we opened gifts. Andrew & Matthew go a nice big indoor bounce castle that will be perfect in helping to get Andrew jumping and help build his muscles. when he opened it he thought it was a pool! lol. They also got a variety of cool toys and clothes.

Then we came home to meet up with his Uncle Jay, Aunt Liz, Grandma & Pop Pop, and their cousins Kamden & Killyan. It was such a great night. The boys were so tired by the end of present openings. They got LOTs of fun things and had so much fun with the family playing with some of their toys. Uncle Jay & Aunt Liz got Andrew a Star Wars Light Saber which Andrew enjoys weilding around. This is great for his upper body strength and flexibility. Grandma & Pop pop got him lots of fun toys and some clothes.

After opening gifts, Andrew wanted to go to bed so he wanted to place the cookies and milk out for Santa and remembered that Santa told them that they had to pick up their toys and clothes so he would not trip over them... Andrew remembered this and tried to clean up his room before getting so tired that he just HAD to go to bed.

Wow, What a wonderful Christmas...

We had an Awesome Christmas!!! It was a bit stressful leading up to Christmas, but the end result was worth all the work. We had two HUGE snowstorms the days leading into christmas which made it difficult for all the last minute shopping. The first storm dropped about a foot of snow. The second storm total was about 18 inches!! The boys loved making snow angels, climbing on the snow mountains and building snowmen and snow forts. There was too much snow to even go snow sledding! They got new shovels to help shovel the snow and enjoyed every minute of it!

You will notice a new slideshow to the right of the page showcasing a new web photo album that we've created with for you to view. You can click on the photos to enlarge them which will bring you to a new window where you can toggle through the photos using the arrows at the top of that page. You can order prints and gifts from the website also. If you have any trouble with it, let us know.

Andrew was SOOO into Christmas this year and the magic of Santa! The boys even got letters from Santa that were personalized to them. They got some Magic Reindeer food for them to sprinkle in the front yard so that Santa's reindeer would see it and it would make them come to our house in a flash! They were VERY into this and had a great time distributing the "food" in the front yard. The sparkles in the food shined bright in the snow and sun.

So busy....

So things with the holidays have been so hectic!! We had a wonderful thanksgiving and are anxious for Christmas to arrive. Andrew is excited for christmas and keeps asking when Santa will be here. It is going to be a great christmas this year since he is so involved with the coming of it. He's been helping to wrap presents and sharpen his fine motor skills using scissors and tape and using his new folding skills to wrap. He's also been doing a GREAT job with his writing skills lately. We owe his teachers and therapists a huge amount of praise for the work they have done with Andrew this year. We were a little reluctant at accepting a new OT and SEIT teacher this year and him starting in a new preschool class this year, but it has proved to be a good change for all of us. His teacher, Pam & Stacy are diligent at following through with his therapy and are encouraging him more and more to do a good job at his work. Andrew is really enjoying his writing exercises now that he knows he can do it. He's able to write his whole name with minimal assistance. Even though we are concerned about his writing habits, we are told that he should outgrow his patterns. He tends to write his letters from bottom to top and right to left rather than top to bottom and left to right. It kinda makes me wonder if he will decide to be left handed. Most of the time he uses his right hand mostly to write, but sometimes tends to eat with his left and the way he starts of his walking makes me think he is left handed, but we wonder if it is because of his weakness in certain muscles.
We are also so grateful for Michelle, his new OT, for the new perspective she has on Andrew's treatment therapy sessions. Although we dearly miss Marybeth and so does Andrew (Talks about her all the time), we are happy to see that Andrew has accepted Michelle and listens to her well. She has some new exercise that she uses on Andrew and it is a fresh start this year. I think he was due for a change as he was getting too lax with Marybeth and had some meltdowns with her... knowing her too well I think and trying to manipulate her too much. Andrew tends to want to call the shots. We miss Marybeth and enjoy hearing from her now and then. She is genuinely interested in the progress of her previous cases.
We are also very happy with Andrew's new SEIT who is a Special Education Itinerant Teacher who comes to Andrew's class a few times a week to help increase his congnitive skills and learning skills. Andrew has made major improvements this year and being able to curb his frustrations and try a little harder to succeed. He's now able to complete more tasks in one sitting without having to be prompted constantly.
He is also still working with an aide that has been a tremendous help with keeping him on track with dressing and encouraging him to be more independent. We've noticed a huge improvement in his listening skills and his ability to be more independent with helping himself rather than relying on an adult to do things for him. Now that he is able to put his shoes on & off by himself, put on his own coat and other clothes, zip them himself etc, it makes things easier than you will ever know. He now enjoys choosing his own clothes to wear in the morning AND likes to choose ours too! lol.

So, time is running out and I've got to run, but I'll try to update again before christmas. Christmas cards will be out as soon as our photos come back. Be on the lookout... Also, be sure to check out Matthew's website too! http://roarslikealion.blogspot.com

Halloween Party

Andrew & Matthew at Karate

New Blog....

So if you look to the right you will see the link to Matthew's Website. We have set it up so that you can now see what Matthew's been up to. Stay tuned for our "Family Site" for news and info on what we are ALL up to these days. Andrew's site will become strictly for Health Info and progress. If you'd like to read our thoughts and what we've been up to, we will try to post on the "family Site" more regularly on the "Life of the Favilles"... I'm sure it will be quite boring, but some may get a kick out of it. It will include little sayings that the kids make, little things they do and all of the other things that we'd like to blog on. It's too hard to keep a book at home with all this stuff and what better way for all of you to keep in touch with us at your own leisure without having to get an email.

Thank you all for your interest. See you there!

By The Way...

If you missed some posts, you can always scroll down to the bottom and click on "Older Posts" or look on right side bar to see the archived posts.

Andrew & Matthew Take Karate....

So, taking Dr. Park's advice, we decided to take Andrew to his first Karate class. We agreed that Matthew could benefit from a martial arts class also to help with his attention skills and for discipline.

The class is for toddlers starting out in the art of Karate and as they increase their ablities, they move to a different class. It is a half hour class and the boys ABSOLUTELY LOVED it!!

Andrew took to the class like it was his job. He followed along with the instructions pretty well, only lagging behind because he could not do the moves as quickly as the other children. There was even a classmate of Andrew's in the class, Catherine, so that was a bit of motivation for him also. They set up an obstacle course that they chidlren had to go through and Andrew did very well.

The best thing is that he wants to go again next week... so we will see how he does in the next few weeks before we enroll him full time on a weekly basis. The class is pretty expensive, so we want to make sure that it is something that he really wants to do. We want him to WANT to do this so that it will be therapy for him that he does not realize that he is doing actual "therapy". After he is enrolled, he will get his own Gie (sp?) (or robe with a belt) to wear that has a cute little dragon on the back. The Dojo is the only one in the area and the Masters are very highly regarded in the community for teaching children respect, self confidence, discipline and highering their education and at the same time will help to motivate and strenghten our chidlren without the use of encouraging violence. It is such a misconception that karate or other martial arts will encourge fighting etc, but it is actually the opposite. These places, if you go to the right one, will only help to better our children all around. It is a fact that children who participate in the martial arts are more focused and do better in school. So it is another advantage and reason for us to enrool the boys.

Matthew was a little too young for the class right now so we may wait until next year to enroll him, but Andrew seemed to really take to it. We may just get him swimming or skating lessons at this time to help him blow off some energy at the end of the week.

So I am in the process of uploading some photos and videos and will have it for you all to view, hopefully by tonight.

I have to leave to bring Matthew to Vermont to see an ENT to check to see if he needs his tonsils and adenoids out due to his severe snoring and breathing problems (stuffiness, runny nose and heavy breathing)
We'll update on that, hopefully I can start up Matthews blog soon too.

Sorry so long...

Sorry this update is so late....
As many of you know, we did finally make it home. Due to the weather we were unable to fulfill our middle leg of our flights on Angel Flight home on Tuesday. The East coast was expecting some pretty severe storms and the pilots were uneasy about the safety of flying through those storms. So in the end we booked our flight home and we ended up having to rent a car to get the rest of the way home. All went very smoothly and Andrew, again, LOVED the experience of flying and going to the BIG airport on the big planes. He had fun playing with the pillows provided on the plane and was making everyone laugh.

We are just amazed at the coordination of these Angel flights and for them to give us the opportunity to take Andrew to a much needed appointment. These people deserve much recognition and we Thank Everyone who was involved!!

Andrew's Angel Flight Slideshow

Album of Angel Flight to St. Louis

Photobucket Album

Andrew talks about his flying experience

Andrew's Appointment went well...

We went to Andrew's appointment this morning and everything went very well. Dr. Park met with us for quite a while and reviewed his files. He told us that it did not look like Andrew would need to have any heel cord lengthening surgeries!! What a relief. He told us we were doing a great job with therapy and keeping his range of motion up through therapy and stretching. His left leg still has only a 18 degree range which they said was fine since they did not really want any more since it would make him crouch and fall forward on that leg more. His right leg was about a 20 degree range which is considered normal~ Even though he is still walking on his toes, Dr. Park is not concerned. As long as he keeps that range of motion and keeps his heel cords stretched he will be fine. He said his hips looked fine at this point and that his pronation of his feet is keeping up fine. The polywog inserts are doing a great job of keeping his arch up. We're hoping that he will continue with this and never have to have any surgeries.

Dr. Park and his staff are amazing. We cannot believe the progress that Andrew has had in the last 4 months! Dr. Park was happy with Andrew's progress and told us to lay off the concerns about him walking on his toes. As he grows, and gains weight and gets older, he will become more aware of this walking and will eventually walk more normal. He kept reminding us that he is only 4 and that any 4 year old will do the oposite of what he is told, so he just told us to be patient and just continue the therapy and be sure to stretch him EVERY day. That is the most important thing at this point. Otherwise he is happy with his progress. He even told us that it would be a good time to enroll him in some sports like soccer, or taekwondo or karate. Even basketball or other running and jumping sports would be fine and that the younger he starts and the more he runs and jumps, the better he will be. We were shocked to hear that since we hadnt considered it, but he told us that at this age, he will be just fine if he cannot keep up and being in a competitive sport will only help motivate him. He also suggested swimming lessons since the water is wonderful therapy. Since his aquatic therapy was not working out too well since he did not like the therapist manipulating him and holding him in the water, we all think that swimming lessons would be the way to go. Also, much cheaper than therapy. So we plan to look into these things when we get home. With winter coming, we thought it would be a good idea to get him involved in something soon to keep him active through the winter months. With the snow and cold, outdoor play will be limited really soon.

So we are pleased to say at this point, there will be no return to St. Louis for quite some time unless something comes up that we are concerned about. Dr. Park told us that his line of communication is always open and that any time we have any questions or concerns, to feel free to call him with anything at all. At this point, Dr. Park is releasing him from his care until we need him again!

I think that is all.

Now we just have to figure out how we are getting home. We've got a few flight options but Angel flight has not gotten our last 2 legs of the flight filled yet. Our first pilot will take us to Indiana but from there, we have no clue yet. We will hopefully find out in a few hours where we stand. We may just end up flying commercially tomorrow morning or we will see how far the first leg pilot can get us and go from there. Either way, it is still a blessing to have had the generosity of the Angel Flight pilots for our trip out here. It really will ease the burden of the cost of round trip air travel.

We'll keep you all up to date. I will upload the photos now and a video of Andrew when we landed after his thrid flight and relaxing comfortably for a bit in the Spirit of St. Louis FBO... enjoying fresh coffee and cocoa and freshly baked cookies!

We're Here...

So we made it hear safely. Our first leg pilot met us at our airport at 8:30am this morning and was ready to take us to our first stop in Buffalo. He had a beautiful plane with nice leather seats and had a co-pilot with him. We all got to wear headsets to hear the pilot and the air traffic control. The amazing people at Angel Flights Northeast sent a care package for Andrew at the airport!! So thoughtful. The box contained two mr potato head angel flight stuffed animals that donned a pilots outfit. There was a story time bear to snuggle with an also a spiderman action figure for him to play with. Andrew had a great time playing with them on all legs of his flight. What a great idea on the part of Angel flights who partner with Hasbro to provide children with toys and gifts on their flights.

So we made it to our fist destination in Buffalo without any problems except that the wind was against us the whole way. Otherwise it was a great flight. Andrew loved being on the plane and even said at one point "why isn't he flying anymore". The flight was so smooth that it didnt even feel like we were flying. Andrew said also "why isnt he going fast?" So little did he know that we were cruising right along. For about a 2 1/2 hour flight.

Our second pilot met us there with his single engine plane. A tall man that was also an experience pilot with many years under his wing! He did all the safety checks and described everything to us in his small 4 seat plane. This flight would turn out to be the longest. With the wind against us we were only traveling about 80 mph!! We had 300 miles to go. Still the flight was nice. It was a beautiful day for flying with not a cloud in sight. THEN about 2 hours into the flight, Andrew decided that he had to "go #2"!!! He just didnt understand that we just can't pull over at a rest stop. AND of course there was no bathroom on the plane. The plane was also tight quarters, so letting him just go was not an option... Anyone who knows Andrew, you just cannot let that happen!! We would have all passed out! SOOO, the exceptionally nice pilot told us that we could land at another small flight line that he could use the bathroom at. OF COURSE, by the time we got there and inside the bathroom, Andrew says "well, I tried, but now I dont have to go anymore"!!!! Typical 4 year old. He tried 2x and we explained to him that if we get back on the plane that there was no way we could stop again... Not to mention that the landing at that tiny flightline was not smooth. The wind was whipping and it was quite the choppy landing with the turbulance.
So we got back on the plane and finished out the rest of our 1 hr. & 1/2 flight. Andrew fell asleep about 10 minutes into that and slept for the whole 1hr & 1/2.
Our landing in Portland Indiana was pretty rough too with the crosswinds, but we made there safely.

Our third pilot was there to meet us but allowed us to make some calls and stretch our legs. He was going to take us the rest of the way to St. Louis. Again, he was a very generous man. He even made up all kinds of sandwiches, drinks, apples and goodies for the way there. It was very nice of him knowing that we had already had a full day of flying in. He had a small single prop plane also that was like a 1960's plane. Although with many updates like a navigation system etc.
Andrew was still a perfect angel and could not wait to get on the plane again! Amazing that it was his first time flying and he couldn't get enough of it.

Our pilot took us smoothly to St. Louis, with barely a bump! We landed perfectly fine in St. Louis and we had mentioned to him that we would have to make transportation arrangements when we landed to get to our hotel... since it was sunday we could not get a rental car. Our hotel in st. Louis was about 30 minutes away so we just planned to take a cab. The pilot offered to take us to the hotel. He lives here locally and said he thought it be best that he take us instead of a cab. He wanted to make sure that we got all the way to the hotel safely. Even though he though that flying was MUCH safer than driving, but flying us to the hospital was not an option LOL~~ So after he parked his plane and tied it down for the night, he packed our bags into his car while we went to the FBO building to have a short break. This FBO was NOTHING like the others we were at. They had everything from gourmet cappuccino to fresh baked cookies right out of the oven. Very comfortable. So we sipped on cappuccino and cocoa and took off for our hotel.

Andrew was so excited to get to the hotel. He was such a great little boy today! He says he cant wait to get on the plane again!... we'll see what he says on Tuesday.

So we're all checked into our hotel and just had dinner... we're calling it a night and trying to get some rest. I'll try to post pictures tommorow of Andrew on the plane.

His appointment with Dr. Park is at 7:30 am and he has physical therapy afterward... so we should have and update for you tommorrow on what Dr. Park Says.

Good night!!

And We're Off....

Thanks to the wonderful people of Angel Flights, we are off to St. Louis this morning!! The amazing coordination of their staff and volunteers have arranged for us to fly free of charge from here to St. Louis. It will be a 3 leg flight there and then 3 leg flight back. Our pilot will meet us at the local airport FBO at 9am for departure on our private plane which will take us to Buffalo, NY. Our second pilot will meet us there to take us on his private plane to Portland, Indiana. There we will me a third pilot who will take us to the Spirit of St. Louis Airport in Missouri!

We are limited with our baggage and there are weight restrictions in order to go. There is much coordination to be done to make these flights happen and all of the pilots are volunteers. Their huge hearts are a blessing to us and to all others who have the need for air travel. We thank them for their efforts and time.

We'll update you all when we get to St. Louis and let you know how it went. This will be Andrew's first time flying, so it should be interesting!

Love to all!!!

YEAH, another step closer...

So, It's been raining so I can't get a video, but just wanted to let you all know that We are SOOO proud of Andrew!! He was able to take the 2 big concrete steps in front of our house ALL BY HIMSELF!! Without any assistance!!!

Here's what happened....
On Friday, Like always, I let the boys out of the car which was parked in the garage. They always like to race to the front door to ring the doorbell... of course Matthew always wins unless Andrew distracts him with something or pushes him down. So Matthew was helping me to bring in their backpacks from school while Andrew headed to the door. Next thing you know he starts yelling "yeah I did it, Mommy I did it all by myself" and I thought he was talking about that he could finally reach the doorbell without climbing onto my flower pots. So I looked around the corner of the garage and he was descending the stairs in his own way, sort of crawing down them. Then he stood in front of the first step and said "watch me mommy, watch me" and he tried to take the step and did not lift his leg high enough and tripped onto the step. So I said "well try again, if you did it the first time, you can do it again". So he stood back up and was determined to show me he could do it. I stood back at the end of the sidewalk so that he could not reach for me and he DID IT, He took those 2 big steps without holding anything or anybody. We dont even have a hand rail on those steps and there is NOTHING for him to hold on to. Before he would sort of just crawl up the steps on his hands and feet and make it to the door. But it's been wet out and getting colder and I think he's realizing that if he could step up the steps, that he wouldnt get cold and wet! Things just keep getting better. It's one less thing that I need to worry about. I'm sure it will take some time, but at least he is trying and starting to take some more initiative to try things on his own without having to have an adult present.

I really feel like a lot of his delays are due to a confidence issue. I think that as soon as he gets the confidence to do something, he can do it. We try to motivate him with everything from, his favorite "Yoodles" (How he purposely says noodles) to ice cream, the park to the zoo! But sometimes it just takes some time for him to realize that he CAN do it if he tries. Most times he realizes by accident that he can do something. But I guess it doesnt matter how he gets there, as long as he does and even if he doesn't, we will love him just the same! I love his slower paced life. I love that he could sit with me for hours just talking. I love that he is so smart. I love that he is so genuine. I love *well not completely* Love it when he can be the big negotiator... makes me laugh every time. I love how he can wrap anyone around his finger by simply flashing his eyelashes on his big brown eyes and look at you sideways out of the corner of them with that missing tooth smile. It doesnt matter really if he never plays football or runs track... He'll still be that same amazing little boy.

Which, by the way, Andrew has decided that he now wants to play soccer... he's never been able to kick a ball before but ever since he decided to wear my knee high black socks to school under his shorts with a running jacket on, he thinks he is a soccer player. He tells us his friend Bryn at school plays soccer and that he wants to play too. (We think he just likes to wear the socks) So now he is determined to learn how to kick a ball. He's never been interested in "ball" games before, but now he is. So, fine by me. If he wants to play, he can play, whether he CAN kick the ball or not. I guess he could just be a goalie and probably a great one at that. Although I would RATHER see him play a "non-contact" sport like golf or swimming or just a great artist, painter or "teacher's Pet". But I guess we all want certain things for our children and we're trying really hard not to push our "wishes & dreams" on the boys. Sean would love to raise a "tiger woods" but I would rather raise a "Monet" or a "Beetoven", but I have a feeling that we'll probably have neither. I'm sure that one day the boys will have their own views on what they want to be and where they want to go in this life and no matter what we say, they will end up doing what they want. I feel there is nothing wrong with a little encouraging to help them find that inner skill or trait, but when it comes right down to it, they will find their own way and will be who they want to be... the wonderful individuals that they are!

So that's it for today... Stay tuned for more by the end of the week. Hopefully the rain will let up for me to grab a clip of Andrew going up the stairs alone. I am also planning on starting a blog for Matthew also. I feel like his part in our lives is just as important as Andrews. He is an amazing boy and if I dont get this stuff down in writing, I am afraid that one day I may forget all the funny things he says and does. The crazy things he says and does and the Horrible things he says and does!! lol. He's our wild child and we would love to share his life with you all. The good, the bad, and the ugly (or dirty, snotty, scratched up, bruised up little boy that he is) He's definitely all boy! Look out ladies, He's a lady's man! lol.

It's The Little Things That Mean So Much....

Just a little note to tell you all about something that is so exciting... It may be nothing to the ordinary person, but to us, this is BIG!!

Last night while standing in the driveway talking to a neighbor, Andrew was hanging on my legs and wanted me to pick him up. Being that he should not be picked up and held to often, for one, he is getting too big, but two, he tends to hang on me for support and we're trying to break that habit.

So anyway, I held his hands as he stood in front of me and decided that he wanted to JUMP up into my arms like Matthew does. Andrew knows that when I do have to pick him up that we tell him that he needs to lift his legs up to help us get him up. This is the only way that I will pick him up. So he was trying to JUMP with BOTH legs. He was bending BOTH knees together and actually pushing off and came off the ground WITHOUT any help from me except lightly holding his hands. Even though it was helping him with balance, he otherwise, did ALL the work by HIMSELF!!! This is HUUUUGGGE!!!!

We have never seen him actually come OFF the ground with BOTH feet together before without us actually lifting him up.

I know it may seem like a little and common feat for everyone else, but this is very exciting. He even thought it was fun and kept doing it over and over again as we cheered him on and he was trying to show off for the neighbor! We'll try to get a video clip of it to share.

ok...

Hopefully you can all see the video. If not you can follow the link to Photobucket by clicking on the link

Anyway.
We had a great weekend visiting Apple Jack's Orchard this weekend on saturday and the boys had fun in the Hay Maze, watching the bees make honey, Feeding the goats, Riding the tractor ride to the pumpkin patch to pick a pumpkin. They had a blast going out into the orchard and picking their own apples... eating most of them before we got to pay for them. They learned the correct way to pick an apple without damaging the tree stems.

After we went to the campground that their Grandma & Pop Pop were camping and even got to go swimming in the lake... This Indian summer is Great! It was a beautiful day and the water was unbelievably warm... although it was on a sandbar and the water was only about a foot or two deep for a LONG way out. they got to make smores and then zonked out in the car on the way home.

Today he had fun playing with 2 new friends in the neighborhood, both named Brady. They played all afternoon.


So we are excited about going back to St. Louis to see what dr. Park has to say about Andrew's progress and have LOTS of paperwork and tests to have done. He has to have new xrays of his hip, spine and legs before going back so that Dr. Park can review them. We're not looking forward to the expense of this trip, but it's just something that we have to do.

We're trying to get a semi-straight flight out there and trying to get a good price since airline tickets are so expensive. It is just such a long trip to have to go there for a day. He will also be having physical therapy there while out there and they will make a video of his progress again to compare the old with the new.

Lets try this

Oops

I just realized that the video's are not playing. So I will post a new video.

Long Overdue....

So sorry that we have not updated everyone on Andrew lately... We seem to have hit a plateau for a while. Things have been so hectic around here and we've been out and about just about every chance we have. We barely have time to catch our breath! So Andrew has started off the new Preschool year. We're excited and nervous that next year he will be starting Kindergarten! My how time flies! He has a new classroom, new teachers, *some previous ones too) and a few new members of the therapy team. He is now getting less speech which is great... He has a new OT and Andrew loves her~ I think it was time for a change, although we LOVED Maribeth, I think Andrew needed a new approach... He was getting too smart with Maribeth. Now he has Michelle, who he really seems to like and she will take over his service coordination also. He still has Meghan for his PT and we are hoping and praying that this will not change! Meaghan has been a TREMENDOUS source of information, advice, ideas and strength for us. Andrew listens to her and he cannot play his "games" on her! She stands her ground and makes him work really hard and we love that! He is still receiving Speech one day a week with Candy and she's commented on how his skills have improved over the summer without her seeing him. His processing is still a bit delayed with brings us to our next team member.... Added to his team is a SEIT, Jessica who will come to his classroom 3x a week for an hour to help him sharpen his skills to be prepared for Kindergarten and hopefully help him to catch up with the class. He was borderline for this service for quite a while and now they felt it necessary to help him stay on track and progress quicker. His attention skills are a bit lacking and his fine and gross motor delays are having their effect on his "reading/writing" skills. Andrew does a lot of guessing with the answers when asked to identify a letter or number, but you put him in front of the computer, and boy can he identify just fine on his own! Strange. So we're hoping that she can help him to progress to be able to keep up with the class. He still has his 1:1 aides to help him in the morning and afternoon. Problem is that he tends to lean on them a bit for comfort instead of playing with the other children. His social skills have GREATLY imporved over the last 6 months especially since his surgery. It's strange how much more comfortable he is to jump in with the rough and tumble play sometimes. Especially he & Matthew... they are constantly pushing and tumbling around... sometimes playful, most times not!! Now that he has more strength and balance he is having an easier time holding his own when fighting over something with Matthew! (It's actually quite funny to watch them tug each other around when fighting over a toy LOL) We step in when needed if things get out of hand. Otherwise he is doing quite well. He just got over a bout of sickness... strep throat again and a sinus cold. We had a bit of a scare at the ER with a misdiagnosed blood test. At the ER when he was really sick, they did some blood work to check his white count and to see if he was dehydrated enough to supplement with IV, they saw that his glucose had risen to 263 and they told us that it was VERY abnormal and that most likely and indication of diabetes! We did not sleep at all just thinking that he may not be able to eat and enjoy the things that he really loves, like Pasta, poptarts, granola bars, cereals etc. We'd literally have to clear out our pantry and cabinets of about 90% of our food! So we followed up with the pediatrician the next morning who reassured us that the test was inacurate considering that he was agitated, anxious, sick etc and that it is quite normal for children's sugar to go up at a time like that. After Andrew finishes his RIGHT antibiotics for the strep (Since they prescribed him a med that does nothing for strep) They will follow up with a urine test to see if he is spilling sugar into his urine. If not, they will consider him fine. If he does spill sugar, they will investigate further. But his ped said that considering his growth patterns and without a family history of diabetes, the chance of him having it is very slim. We'll see what happens. So we've been doing a lot of traveling and a lot of things around the house. We've finally got our fence installed in our back yard for the boys. Now they can happily play outdoors without our fear of them escaping the yard to the road or one of the neighbors houses... Once, Matthew left the yard and helped himself to the neigbor's kitchen!!! Talk about freaking out!! So now they can play in the yard while I watch them from the window in the kitchen and make dinner instead of having to drag them in the house every time I need to go to the bathroom or get the phone. We visited my brother and sister-in-law and nephews labor day weekend. It was a nice get together and we all had a great time. We did lots of fun things and the boys will be talking about it for quite some time. They had a BLAST at Six Flags, they loved visiting where uncle Jeremy works at the airport in DC. They LOVED playing with their cousin Kasey. They said they want to move there to be closer! so cute. They got to ride the Metro and we enjoyed the zoo there. It was a very tiring time, but was a lot of fun. So Andrew has his follow-up appointment at St Louis Children's with Dr. Park on October 22nd to see how he has progressed. Andrew's PT had called his office and spoke to Joan about why Andrew has started to walk on his toes a bit again. especially when he is tired. It makes sense that he is tired and will go to his toes, but from what Joan told us that it is Normal and that hopefully as he grows stronger and heavier that the weight will bear down on his ankles and help him to keep his feet flat. As long as he keeps his range of motion, that is great, which he is. We know that it will take some time for him to get flat footed more regularly, but it's so hard to see. We're glad that the SDR at least has taken care of the spasticity and the his IS able to put his feet flat. We're hoping that a growth spurt will not ruin the looseness that he has at this point. We know that he did just go through a growth spurt since none of his pants fit, but has still not gained much weight. So we will keep you all updated. In the meantime, enjoy some photos and videos of our trip to Maryland.

Having Fun At The Beach

Photobucket Album

Hello all...

It has been a while... I plan to post a video tonight of Andrew's Walking. He is doing well since he started Aquatherapy. He is getting frustrated with the therapist since she is trying to get him comfortable on his back in the water since she plans to do lots of exercises on his back. But in his mind he thinks that it is play time. So we have some plans to spice things up a bit for him at his next session. It has been really difficult lately to see him back on his toes again. It is the constant reminding him to put his feet heel to toe. and of course he is frustrated with us by telling him all of the time also. But it seems that fatigue sets in in the afternoon and of course he is not really motivated first thing in the morning. So when we see him the most on weekdays (morning and evening) because he is at school all day, it seems like that he is having a setback, but in actuality we see a difference on the weekend when he is with us all day.

Otherwise he is doing well. We notice that he is much stronger and has better balance and things get better little by little every day. Of course, since his IS doing more strenuous activities during the day, he seems to get really tired in the evenings.... BUT it doesnt help that he just lays in bed and doesnt fall right off to sleep. He rests for a long time before dozing off.

Here are some pictures of the boys at the beach and I'll post more photos and video later.

7 and a half weeks....

Well, we are past the 6 week mark and Andrew is doing great. He's been getting a little mad a people for telling him to walk heel to toe, but we keep telling him that if he would just do it on his own, that everyone will stop telling him to. Even the 3-5 yr old children at school are telling him also. Kids that age are so cute when they like to participate in people's care.

So Andrew started his first Aquatic Therapy session last week but did not get into the pool yet. Today they will put him in the pool and we'll see how it goes. His new therapist there would love to see him 2x a week, but we only have 13 visits left under our insurance. After the 13 we will have to pay out of pocket. So we may try to stretch it out until we go back to St. Louis Children's in October and then go from there. We're trying to find a way to get the insurance company to cover more but it is pretty much set in stone. So we're looking for a way around that.

We celebrated Matthew's 3rd birthday this weekend and the boys had a BLAST. Our back yard was basically a fun park. We had a HUGE bounce house, big blow up waterslide, a blow up pool under the playset slide, the playset of course, and another kiddie pool, balloons, games and of course, cake and ice cream. There were about 35-40 people there and about 18 of them were kids under 5!! WOW what a party. Needless to say, the boys zonked out by 7:00. Andrew did REALLY well in the bounce house. I would love it if we could afford to get him something like that for therapy and also for Matthew to burn off some energy!! lol. It's funny to want one child to burn off energy and another to gain some energy and strength!! It's like one extreme to the next.

But anyway, we're hoping the Aquatic Therapy will help with Andrew's sensory issues also since he's developed some different sensory issues in the past 6 months or so. Some seem to have gotten better, while others seem to have cropped up and are unbearable. I'll post more about that later and see if anyone has any suggestions for us.

Well, it's time for me to go pick up Andrew for his 4:00 therapy. Hopefully I can post some photos again soon.

Andrew 4 weeks Post-Op SDR Outdoors Walking

4 Weeks Post Op...

I know it has been a few weeks since we've given an update, but things have been still hectic. Last week Andrew came down with Strep throat and had to be home from school. You would have never known he was sick if he didn't have the fever. It took him a while to get back into the routine of going back to preschool/daycare, but things seem to be going smoother. He has a new 1:1 aide now and a new OT. He has also been placed in another classroom with all new students and teachers, so it has been quite the transition back to school. We were not anticipating all of the changes and only found out about them when he returned. Although he truly misses his aide Megan, he seems to be adjusting nicely to his "girlfriend" as he calls her. We are finally able to start getting him to wear his shoe inserts to help his collapsing arch in his feet, so hopefully this will help with his feet turning in and prevent further surgery in the future.

He has been doing amazing with his walking and his PT commented how he is starting to use a nice heel strike when prompted. He seems to have most of his strength back and seems to have better balance while standing still. Before he would teeter totter to keep his balance by forward and back stepping to keep from falling. Now he can stand with both feet planted in one place! He does still need reminders to stand tall. He seems to forget that he can easily straighten his knees while standing and tends to do the same when walking. We're trying to teach him how to use his full leg extension while walking along with trying to remind him to walk heel to toe. He tends to be walking toe to heel but with reminders you can see him concentrate on placing his heel first with his toes raised. Sometimes he will over exagerate his step and concentrate so hard on doing it right that he will trip, but he is trying so hard. To the average person all of this comes naturally and now it has to be taught to him.

Otherwise he is doing GREAT. We feel that we made the right decision and that we have lost nothing from the surgery and have only gained some ground. Our biggest fear was that he would lose the ability to walk because of losing the high tone that he previously used to walk. But he seems to be adjusting well and we can only go forward from here. It is with much relief to see him doing so well and Matthew only adds to the joy with how helpful he is with motivating Andrew and helping him when he needs it.

Also, we are wondering if it is a coincidence that his language has picked up since the surgery?!? He seems so much more confident and sure of himself especially when speaking to you in conversation. He is using more "grown up" terms and phrases that he never used to. It is so enjoyable to talk about his day. He seems much less frustrated when talking to you and is even more able to pay attention and process what you are saying to him also. He seems to be much more calm than before and recovers more easily from his frustrations. Hopefully this continues, but in some ways it's not so good since he is much better at pleading his case to us... the lawyer/salesman/politician (no offense to anyone) kicks in and he starts to manipulate us into going "HIS way" in a more convincing way than before.... Makes it harder to make him see things OUR way.

So that is it for now... We've uploaded another more recent video and I will try to post it after this. Hopefully I can get some more up by the end of the week.

Enjoy!

4 Weeks Post-Op SDR Video

Andrew's First "New" steps!!! 2 Weeks Post Op SDR

Andrew's Videos

Photobucket Album

Guess Not...

Well lets try this then....
Here is the link to our Photobucket account.. Here you will find some videos. I have to do a clip of a "before SDR" video. I've go to get my old analog camcorder hooked up to the pc again to make some clips. Be on the lookout. It will be a nice comparison.

Just click on the link below and it should bring you to an album of videos and some old photos of the boys... To view a video, just click on the image and it will start to play.... Enjoy....



http://smg.photobucket.com/albums/v653/thefavilles/

Happy 4th of July!!!

What a relaxing day we all had today... Andrew was walking all over the place today... indoors AND outdoors without ANY assistance! We are just ecstatic that he is doing so well... it's almost like he never had surgery and that he just decided to walk better. It's really strange... Like things are already back to normal only BETTER! It's unbelievable unless you see it. And if you knew how Andrew walked before surgery you would never know he was the same little boy that struggled just to stand in one place. He would wobble back and forth on his toes just to try to stand. Now he can stand flat footed without rocking back and forth to stay balanced. We've uploaded some videos to share FINALLY. It has taken quite a while to get them up, lets see if this will work.

[URL=http://smg.photobucket.com/albums/v653/thefavilles/?action=view&current=MOV00740.flv][IMG]http://img.photobucket.com/albums/v653/thefavilles/th_MOV00740.jpg[/IMG][/URL]

So Andrew had his first day back to school yesterday!! He had a GREAT day. I was expecting him to fall apart when I picked him but surprisingly he was so chipper! No tears or whining at all last night... not your typical Andrew. With his sensory processing disorder he has trouble with transitions and chaotic situations and he has been handling himself so maturely. He started in a new preschool class yesterday with all new teachers, some different students, and even a new 1:1 aide and still had a great day. The teachers told us that he did very well getting around on his own be either sidestepping or holding someone's hand. He did well down the long hallway to the cafeteria and outdoors only to take a break here and there to rest along the wall.

He started back with his regular PT yesterday also. Meaghan said that he did wonderful with following directions and participating willfully in his PT. Of course, she brought Matthew along for some motivation. But otherwise she said they worked really well together and he had a great session! She was please with his progression and we only hope that he can be walking on his own very soon. We're so anxious now after seeing that he is progressing so quickly. We were not expecting him to be getting around on his own at all yet, so this comes with much relief!

When he got home yesterday he had a big package waiting for him that he could not wait to open. We told him who it was from and he literally tore the box apart. (you know who you are & Andrew Thanks you all so much!!!) He tore through the contents and didn't want to do anything but explore the gifts. He was so talkative and spoke so clearly and grown up... we almost hated to put him to bed since he was so enjoyable to be with. No whining or crying at all last night. We commented on how even though we only had little ceasars pizza bread for dinner, that we actually had one of the most enjoyable dinners we've had in.... we don't even know when! The boys were so polite and everyone sat throughout dinner. The boys didn't demand this and that and we were not jumping up every minute to get something for someone or chasing someone to sit back down. The boys told us about their day and took turns talking nicely. They didn't argue or fight once last night!

But anyway, we'll see how he does in therapy and school today. May be a whole nother story.

Happy July 4th Everyone!

We're home....

Sorry it has taken so long, but with getting settled home again and helping Andrew get around has been a lot of work.

We got home all in one piece after a really long drive. Andrew was pretty uncomfortable in his car seat and didn't want to take his meds. We ended up stopping at a drug store frantically looking for something to mix his meds with. We came across some liquid candy, but not paying attention, it was sour apple.... Big mistake. It was horrible!!! We just did everything possible to make him comfortable with pillows and blankets. We made many stops on the way home to get out, stretch and try to rest.

As soon as we got home, Andrew got busy cruising around the house. Although he was walking before surgery, he now has to learn to walk all over again. He's crawling as his main means of travel or by holding someone's hand. We've sold all the toddler push toys we had, so he needs lots of help getting around. He still gets stiff here and there, but has made an amazing improvement since the time we left the hospital. We are shocked at how fast he is bouncing back.

He started his therapy again here at home on Tuesday and was motivated to work hard. Although the therapy program he is getting may not be the best for him at this point since we are doing all the same things at home. This is his fill in therapist. He will be back on with his regular therapist SOON!! So we talked about the alternate therapist doing cranio sacral therapy or Mayofascial release therapy instead since he will be getting the more intense physical therapy from his regular therapist and at home. We're thankful it is summertime since he is much more active outdoors.

He even climbed his climbing wall on his jungle gym playset and went down the slide by himself. All he needed was a little guidance on where to put his feet since he was OVER correcting on lifitng his legs. Before he would struggle to get his foot to the next step on the climbing wall. Now he over steps and misses. It will take some time for him to get used to his new flexibilty.

Andrew made his first trip to the McDonald's playplace today! I was a little nervous about the strength it would take him to climb to the top to be able to come down the slide, but surprisingly he went right up the platform, through the tunnels and down the slide, all by himself!!! It took him a bit longer to pull himself up onto each platform level, but he did it by himself. Needless to say he was a bit tired and wanted to go home and take a nap after.

His new favorite movie is the Fantastic 4.... He loves to pretend he is "The Rock Guy" as he calls him. He pretends he is him and showed me today how he can jump. He was holding onto the couch and had his feet on a bean bag chair. He then started hopping up and down with BOTH legs at the SAME time. Before the SDR surgery, he could only lift one leg at a time and his left leg rarely cleared the floor. Today, both legs completely cleared the floor and were together the whole time. he was so proud of himself.

He's finally getting the hang of the idea that he can place his feet flat now. He needs lots of reminders and a lot of confidence building that he can do things on his own. He seems a bit apprehensive about letting go out of the fear of falling. The other day he fell on his behind and said it hurt his back... so he is a bit afraid of falling.

At therapy today he worked on side stepping which he could barely do before, now he can side step holding hands with minimal straining. He also worked on going from sit to stand, squat to stand and high kneeling and half kneeling. He did really well and desereved the trip to McDonalds. He still fatigues pretty quickly and after resting has some stiffness in his back and slight pain... but after he gets up and moving he is just fine. We've been getting by with tylenol here and there for the pain. He still tells me that his ankles and legs feel like there is bugs in them, he says. So he is still having some muscle spasms which seem to be subsiding. If we just ignore it or do some deep pressure massage, and change the subject he seems to be just fine.

But, it is late and time to get some rest.... Another therapy filled day before the weekend.

I'm in the process of posting some more photos, so check back tomorrow possibly... if I can fit it in the day

We are off....

Andrew is being released today from the hospital. He is so excited to go home! and so are we. He had a GREAT therapy session yesterday afternoon and this morining. Yesterday the therapist got him up into a standing position. We have many photos and videos to post and as soon as we can, we will.

Today at therapy, it was an hour and a half session before we left and he did AWESOME!!! He was crawling all over the place with limited pain and was doing unbelievable behind a push cart walking by himself with minimal assistance. The PT basically only had to hold his hips into position! We are going to be on the road all day and night so we will update again when we get home.

Love to everyone!

He's up and moving!!!!

Andrew had a great afternoon yesterday. They started his in bed therapy yesterday, basically just showing us how to position him more comfortably. Then in the later afternoon they showed us how to transfer him to his wheelchair so that we could finally take him out of his room! AHHH freedom. He's off all pain meds through IV and is completely disconected from all IVs and monitors. He is taking the occasional tylenol w/codene for pain and had his Valum last night before bed to prevent the nighttime muscle spasms.

This morning he was able to get out of bed to go to the Therapy Gym, which is unbelievable! He was not very cooperative after the first half hour, but he was able to get into crawling position on his own and was able to bear some weight on his legs.

Two funny comments from Andrew.... Yesterday while I was helping him to get dressed, while rubbing his thighs he said "Mommy, my legs are soft" and I said "Well yes, that's the whole idea behind all this" and he said "well I want them hard again".... That's how much of a difference there is that quickly... there is no longer any tightness in his hamstrings and he is able to place his feet flat by himself.

This morning as I was helping him to roll over he was wimpering and the nurse asked him where it hurt and he said, "Well, I don't think my legs are supposed to move like that, something is wrong!" LOL... Since he has no more tightness, he thinks his legs are not working right! He keeps saying, "My legs are broken mommy".

So, the doctors were right on how quick you would see a difference!

Anyway, he is in therapy now, and the family resource room is closing, so I will try to update more tonight at the hotel.

Thank you all for thinking of us and praying for us.

:) xoxoxo

June 21st...

So Andrew had a great night last night. They weaned him off his Phentinol (sp?) for pain. He is now only taking tylenol and Valum (Sp?) for the muscle spasms. He seems much more comfortable today than yesterday. It's so hard to believe how fast kids bounce back. He has his urination back and is doing great with that, which is awesome since he could have developed incontinece after surgery! So we are happy with that. He is fighting us every step of the way to get out of bed! He was brought up to the 12th floor neurology unit last night and is much more comfortable there than the PICU. He is able to be inclined to 30 degrees in bed which helps him be a bit more comfortable, but for him it's not enough. He ate many popsicles last night and started breakfast this morning. Daddy asked him if he wanted bacon & eggs, cereal, oatmeal, fruit, or a bagel and he said "Yes"! lol. So they just brought everything and he ate really well! He actually had 2 bowls of cereal before lunch even though we told him lunch was on the way. He ate his soup, pineapples, yogurt and juice and loved it! Matthew was able to come and spend time in his room. They were so cute together, like they had been apart forever! Andrew cried when Grandma wanted to bring Matthew to the rooftop garden. They were having a clown parade and a horticulture therapy event. Matthew got to plant flowers and plants and painted a flower pot for Andrew with a plant in it.

So, Dr. Park came to visit this morning and was VERY pleased with Andrew's movement and motivation to get out of bed. He said most children are in a bit more uncomfortable and usually Andrew is not well with pain... So that sounds good. He will be able to get out of bed in the morning and will start his first Therapy session at 9:30am and again at 1:30pm.

He is much more comfortable today and more alert not being on the pain medicine, but still a bit sleepy. He slept really well last night until 5am when I tried to help him pee and forgot to take the cover off the urinal and soaked him! Poor kid... Dumb Mommy! so we had to get him changed and then he was up for the morning.

Here is a link to some more photos from today on the Kodak Easy share website... if you have trouble let us know. http://www.kodakgallery.com/I.jsp?c=uhdvt31.1ojwlh2d&x=1&y=-cv3qag

We'll post more tomorrow. Hope you are all enjoying this blog. It's so much easier to update from here. If you know anyone that wants it, forward it to them please.

And thank you all again for the "get well wishes" for Andrew. It has really cheered him up!

Sorry for the delay...

I'm sure you are all itching for an update and we're sorry it has taken so long.... but as you can imagine it was a rough day AND night last night. Andrew's surgery was a total of about 5 hours with the anethstesia, positioning and closing of the incision. He was taken in at about 12:30. The doctor called us with an update about an hour later to let us know that they had started. We waited anxiously for another update. They updated us another hour later to let us know that they were done the one side and were ready to start on the other. He was stable the entire time without any problems. They called us at about 4:00 to let us know that he was on his way to recovery. We saw him in recovery while he was still sedated and he looked great! The swelling that they told us to expect in his face from positioning was very minimal. He just looked like he was sleeping. He was transferred to the PICU and has a WONDERFUL team of doctors and nurses. The hospital is AMAZING... these people really love what they do. They are so accomodating and generous around here, except for a few of the off beat patient family members who are very uncoureous and rude, we've had exceptional accomodations.

They were assessing Andrew all night to be sure that he was comfortable and on a good pain regimine. Dr. Park does not like the children to be in any discomfort whatsoever which is a relief! He had a moment after coming out of his anethstesia yesterday but mostly because he wanted to get up and get out of there and go home! He complained of back pain and wanted his IV out, so they kept him a bit more sedated last night. He was running a fever last night which they said is normal for most surgeries, especially on the spinal cord. It's the body's normal reaction. He did well during the night but each time he woke, he wanted to just get out of there. Hours after he was there they assessed his movement which was all right on target. He was definitely able to move well since he was trying to sit up all night and was kicking at the nurses for trying to keep him laying down, so there are no signs of paralysis, no spinal fluid leaks and no pnemonia from the breathing tube... So all is well!

This morning Dr. Park came to see us. He is happy with Andrew's rectivity to stimulation. Andrew is complaining of pain in his legs, but Dr. Park assured us that it is normal and that it is not pain but more of an oversensitivity and muscle spasms. They are giving him meds to control it, but it is all expected. We were told that it will wear of in time.

They are currently in the process of transferring him from the PICU to the 12th floor In-Patient unit. He is doing REALLY well and they feel it is time for him to move. They will start his physical therapy in the morning as soon as he is able to eat and drink. They will take out his IV possibly tonight to see how he does on oral meds. He will be taken off sedation and put on tylenol with Codene for pain... which is what we are told all he will need for pain, but if he does not tolerate the spasms with just that, then they can use alternative medicines to relieve the discomfort.

We will give you another update as soon as possible, but we wanted to let you all know that he is doing just fine. As for us, we are tired... To be expected. Maybe tonight we can get some rest. There is a HUGE cafeteria and a BEAUTIFUL rooftop garden and fountains VERY soothing and relaxing. They have parents lounges with sleeping areas and any amenities that you could imagine. They provide you with everything. You really dont even need to leave the hospital~ Well needed!!

Matthew is being an Angel!! I know, hard to believe, but he is! Grandma, Grandpa & Nana are taking him to run off some steam today... I'm sure he will be ready to burst at any moment. lol.
So anyway, if you visit http://www.stlouischildrens.org/home/giftsgreetings/tabid/74/Default.aspx you can send us messages that the staff will pass along to us and put in Andrew's mailbox. We plan to make a scrapbook of everything, so be sure to drop him a line!

Hopefully we can update tonight.

The photos above are before and after surgery.

Thank you all for your prayers and thoughts of us... they are greatly appreciated!
BTW, I am still working on being able to upload video to you all. These computers are protected from FTP and dont connect fast enough to upload to a storage site. But we'll keep trying.

Thank you all again.

Andrew's Consultation....

Ok, well before we had Andrew's consultation... yesterday we visited the St. Louis Zoo... Which we had a Wonderful time at. Although the weather is quite steamy here, we all enjoyed all the animals. Andrew & Matthew especially enjoyed the Primates area... The apes and gorillas loved them too. One gorilla made it well known that it was HIS territory by thumping his chest and banging the glass where they were kept to let Andrew & Matthew know. They even got to watch a little baby and it's mother give kisses & hugs to each other. Andrew REALLY loved the penguin and puffin area... there were a few that looked like Happy Feet and Andrew said that he can't wait to dance like "Happy Feet"!!!

So we went to Andrew's consultation today and met with a physical therapist first after watching a video slideshow of the surgery. The PT told us that they were downgrading Andrew to wearing "Polywogs" shoe inserts for a while rather than the AFO braces that he has been wearing. They feel that he is using them to lean on when walking & standing. We're hoping the surgery will eliminate the braces altogether. The PT was reassuring that his recovery will be quick since he has great range of motion and strenght and the surgery will only help him to increase that strength over time.

After the PT meeting we met with Dr. Park, the Neurosurgeon... He was very happy to see Andrew and is pretty confident that the surgery will benefit him. He told us that basically all of our hopes for the outcome of the surgery are not too far away. He gave us much needed info about the surgery and recovery which has helped put our minds at ease. He really told us that he would not tell us that he could benefit from the surgery if he was not sure that Andrew WOULD. It will definitely be a long road to get Andrew strengthened but we are prepared for the work. Dr. Park explained to us what to expect during and after the surgery. He told us that the surgery may not FIX his pronated ankles but will reduce his chances of having to have orthopedic surgery. He said there is about a 20% chance that he will have to have the surgery but that it would not be until he is at least 11 or 12 years old. The hip dispasia will hopefully also correct itself over time and therapy. He told us that it is common for children with CP or other kids that walk at a later age, have hip problems with displasia because of the weight that should be upon the hip at an earlier age to help to develop the bone more normally. But over time, Andrew may be just fine in that are as he starts to bear more weight onto his legs post-op.

So, overall, everything is going as planned. We will be at the Hospital with Andrew at 11am. His surgery will be started at 12pm and he is not expected to be out of surgery into the Pediatric ICU until about 4pm. We will keep you all updated when we have time.

Oh and after his appt. today we visited the St. Louis Arch. The boys had a BLAST there. We got to go up inside this monstrous structure in a sort of space ship pod that is inside the arch. Andrew LOVED the ride up... Matthew was not so confident... I think he was picking up on Sean's uneasyness of the height. This thing was huge. We took lots of photos, but we've attached a few to get you started... I am trying to upload the rest to to a webpage. Be back tomorrow.... And thank you all for the Well wishes.

If you would like to send Andrew an email or pics or something you can send it to drewmatt@charter.net That is Andrew & Matthew's email address.

We're Here....

We've arrived all in one piece to St. Louis. We got to our hotel at about 12pm today. It was a pretty uneventful car ride. The boys were great in the car. We stopped in Carmel, Indiana to visit Sean's cousin Linda & Brian and their children. While we were there we went to a splash park where the boys could unwind and splash in the water. It was a refreshing way to cool off in the hot weather and they ran off some energy while we were there. We got to their house at about 2pm and had dinner with them and left at about 8:30 to a hotel. We all got some well needed sleep! We left there and traveled the 2 1/2 hours to the hotel... which is Right in the heart of St. Louis. We got to pass the arch and we are planning on going out to get some dinner as soon as Sandy & Lester get settled in. Their plane arrived ok and we are just waiting for them to get to the hotel.

Here's a pick of Andrew & his friend Brady before we left on Friday, at his end of the year picnic at school. I've also posted a pic of Andrew & Matthew at the splash park. I will post more later tonight. I'm having FTP trouble.

we're leaving tonight...

We are planning on being on the road by 7pm. Wish us luck.

And the video, I could not get it to play within the blog. So you will have to click on the link to get it to play. You also have to have a Quicktime Player to view it. It is a free plug-in that MOST people have anyway. If you have trouble, let us know.

We'll let you know when we get there and what's next.

Here is an attempt to post a video of Andrew from Last December. He was singing a song called "Malti" from Dan Zanes & Friends. Some of you may have seen this already, but we wanted to post a "before" video to see if this will work. So sorry if this doesnt work and we'll try again later. if not here is a link to it
http://webpages.charter.net/thefavilles/andrewsinging1.MOV

Our first post in the progress of Andrew through the Selective Dorsal Rhizotomy Procedure (SDR).

Andrew was born at 29 weeks. 11 weeks premature for no apparent reason. As a result he suffers from Mild Diplegic Cerebral Palsy. He has been in Physical Therapy for almost 3 years and started with Occupational Therapy about 2 1/2 years ago to help with his fine motor delays and Sensory Processing and has been seeing a Speech Therapist for a year. He started preschool last fall and seems to be progressing quite well and seems to enjoy his classmates and teachers. Andrew has a wonderful team of therapists, doctors, teachers and support staff. He has made huge progress since his diagnosis and therapy regimen started. Andrew was delayed in his gross motor skills which prompted a Neurologist to examine him and in turn an MRI was done. The MRI was consistent with the Neurologists diagnosis of Cerebral Palsy. Andrew did not start to walk and take steps until after the age of 2. Since then he has progressed nicely, but not enough for him to be able to climb stairs independently or be able to run, jump and skip as his peers do. He has a difficult time on uneven ground and tires very easily with much walking.

Andrew underwent 2 rounds of botox at Shriner's Hospital. The Botox treatments were like a miracle. But after much research it has been found to be damaging to the muscle tissue since the Botox actually paralyzes the muscles to release the spasticity. Then with having to be casted for 2-3 weeks after each round of injections and the back and forth followups for injections, casting and cast removal.... the Botox only lasts about 3 months. After about of month of appointments surrounding the Botox treatments, he really was only getting 2 good months of "good walking" out of it. Since Botox is only temporary, we wanted a longer term procedure to help him achieve his goals. The only other options that we could find that would benefit him at this point are a Baclofen Pump or a Heel Cord Release. The pump is not permanent and has many side effects including fatigue, which he does not need! and the Heel Cord Release is actually cutting into muscle that can cause future muscle damage and most likely will have to be repeated. This surgery also would not be done until the age of 8... which is too long to wait for help for him.

So after a year of research we decided to see what the Neurologist thought of the Selective Dorsal Rhizotomy. He thought that Andrew would be a good candidate. So we began the application process with The St. Louis Children's hospital and after review, Dr. Park there thought that Andrew would be an excellent candidate for the surgery. It took us about a year to decide to go through with it. He was accepted for surgery and now we are on our way to St. Louis!

The initial review of Andrew is on June 18th and the Surgery will take place on June 19th.
We will keep you all updated with his progress so check back often. This is the best way we know to keep everyone up to date. We hope to keep a video library of his progress along with pictures and other information.

If you would like to read more information on this procedure, please visit http://www.stlouischildrens.org/tabid/89/itemid/1539/Cerebral-Palsy-Spasticity--Selective-Dorsal-Rhiz.aspx