Vote For Hannah's Hope for the Nov. Pepsi Refresh Project!

We're at it again...

We're helping Hannah's Hope Fund by telling everyone we know to vote for them for the chance to win a Pepsi Refresh $250,000 grant. Tell everyone you know and it will help them to get one step closer to finding treatments and possibly a cure for GAN. To learn more about this organization you can visit www.hannahshopefund.org. To vote for Hannah's Hope Fund in the Pepsi Refresh Project, visit http://www.refresheverything.com/hannahshope or click on the widget on our page.

Hannah is an adorable little girl living with Giant Axonal Neuropathy (GAN), a rare genetic disorder that slowly takes away one's ability to walk, use one's hands, speak, swallow and is terminal. We know too well the difficulties a neurological impairment brings to the quality of life for a person. Hannah's story is alike but also much different than ours since Hannah's disorder is life threatening and in order to help her, we need to support the Hannah's Hope Fund.

You can also help by going to http://www.refresheverything.com/hannahshope and looking to the right of the page to retrieve the code for a widget that you can add to your outgoing email signature, blog or website. The more people you reach, the better the chance we have of saving Hannah!

It's Autumn!!

Our fall days have been filled with seasonal fun! The boys are enjoying all of the falling leaves and festivities of  apple orchards, picking out pumpkins, decorating for Halloween and trick or treating.  Matthew finished out his soccer season with a bang. He scored lots of goals this season and can't wait to play again next year. They offer indoor soccer here but who can get their kids there by 4pm all the way across town 2 nights a week?  Not this mom! Andrew just started boy scouts tonight and can't wait to go and see all of the fun things boy scouts do. They are both doing well in school, but we'll know for sure mid-November at Parent-Teacher conferences.
Andrew continues to progress after his surgery very nicely. Since he only had the left leg done at this time, we're working just as hard on his right leg, which continues to show signs of toe walking. We're really hoping that with the increase in PT that it will correct itself like the doctor hoped. The PTs are starting to really work on strengthening and balance as well as his walking gait. He walks much different than before surgery, so he's basically learning to walk all over again. We've tried him out without his AFOs for the last 2 days at school and he seems to be doing well, but exhausted by the end of the day. His Neurosurgeon, Dr. Park, wants Andrew to ditch those braces as soon as possible, and now that we are a month post-op, I think its' time to start him weaning off them. He still has therapy 4 days a week (ughh, exhausting with all this running these kids around). It's been quite frustrating with his outpatient PT since somehow his sessions keep getting cancelled! I think we may move him to a different clinic... but the therapy when he does get it, is very good. He is making a lot of progress and now just started running again! He seems much quicker and is also having an easier time going alternating feet upstairs too. Now he just has to train his brain to lead with his left foot. It's been such a habit for so long, it's difficult to break.  So you'll all have to watch the new videos we posted on YouTube with Andrew running from house to house on Halloween! It was such a relief not to have the wagon to get him from house to house this year! The boys went to every house on the block and Andrew did a great job keeping up with the group. Only a few times did they have to wait up for him! The videos are a bit dark, but be sure to watch them in HD so they are clearer. We're planning on getting some more post-op videos together soon. I'd like to do a monthly video now. He's just been progressing so quickly that we can't keep up!

 

Visit www.youtube.com/thefavilles for more videos!

We had a great Halloween this year. The boys both dressed up as zombies and Sean & I actually got dressed up to go out on Saturday night to a costume party. We've never gone out on Halloween. We dressed up as Snooki & Pauly D from the Jersey Shore. We had a great time and got lots of compliments on our costumes. We laughed all night long.
Speaking of Jersey Shore... we sneaked a trip down to New Jersey to surprise my cousin Wendy for her 40th birthday for the night and had an amazing dinner at Moonstruck in Asbury Park, NJ. Great food, great service and lots of fun. If you ever get to Asbury Park, you've got to go eat there! We had to keep it a secret from the kids so they wouldn't be mad that they couldn't come. They love going to Jersey to visit family. It was a bit exhausting to drive the 6+ hours there, dinner & drinks all night long and then 6+ hour drive back all in a matter of 24 hours... but it was worth it.

Sean & Mel outside Moonstruck - Asbury Park, NJ

The weather is starting to turn crisp and we finally gave in and turned on the heat! We've had a little bit of snow that didn't stick, but it's still snow! We've officially retired the bikes & pool toys for the summer and have to get the sleds and shovels warmed up for winter. Take down the Halloween decorations, only to put the Christmas ones up. We have our family photo session on Sunday on location and pray that it's not too cold. It could make for a miserable day.

Andrew's Zombie costume

Matthew's rockstar zombie constume

Matthew's rockstar zombie constume

Matthew, their cousin Killyan & Andrew

Cousin Kamden, Matthew & Andrew with the spooky skeleton

We're home...

As you've probably heard already, we got home safely.
On Friday (1 day post-op) Andrew went to Physical Therapy at the hospital. He woke up this morning and was not in hardly any pain. He slept well too aside from some leg twitching throughout the night. We arrived a PT and unfortunately Dr. Dobbs was unable to meet us at PT and we couldn't wait until later to see him since we had to catch a flight home. His session went well and the therapist was able to get Andrew to put weight on his legs and got some stretching in. It was hard to get him to try to take steps. He told us after that it was "complicated" to get his feet working right and said they felt funny. (strange to him but normal for us). It's going to take some time to get him stretched out and on a better walking pattern. 7 years of toe walking is a hard habit to break.
So our flight home was pretty uneventful. We had to again take a train to the airport and two different flights to get home then a 2 1/2 hour drive & a stop to pick up Matthew at his grandparents house. Needless to say, we were exhausted!
The next morning we all went off to Matthew's soccer game (which they won, yay) and then came home to do some more exercises with Andrew. We came up with the idea to have him push around our large suitcase that has 4 swivel wheels on it. It was great to see him take a few steps on his own. We stretched him gradually all day and had him wearing his tension leg braces that force his foot and heel cord to stretch at a resting position. He didn't complain at all.
By Sunday he was ready to play with his friends, so we had lots of company and it really motivated him to get moving instead of sitting on the couch moping all day. By the end of the day he was able to take some unassisted steps.
So today was his first day back to school and he was really scared to go. He asked lots of questions about how he was going to get around school and what happens at gym and recess. So we went to school to drop him off (I was prepared to stay for the day) and he was determined to walk across the entire school all the way to his classroom (the furthest from the entrance to school) He did great! Little shuffling steps, but he did it holding my hand the whole way. His face lit up when just about every single child he passed in the hall welcomed him back to school. We knew right away that he would get more than enough help to make it comfortably through the day. His teacher assured us that he would be fine. We met with his PT to give her the scoop on what to expect on his first few PT sessions. Of course today was also "gym day". So the gym teacher adapted his gym time accordingly and Andrew was able to play on the scooter chairs in class.
So by the end of the day when I went to go pick Andrew up, he was actually walking completely independent! Slow, but steady and the best part was that his heels were DOWN and his feet were FLAT! Now we just have to work on strengthening those heel cords, gastocs and hamstrings and at the same time keep them stretched out. Then we'll work on his form.
We're are excited but it makes me sad to hear Andrew say "I wish I never had this surgery now". But when I ask him why he says that and he says "Because now I can't play with my friends today"... But I've assured him that it is just a matter of time he will be back to running down to his friends' houses and he'll be happy he had the surgery.
Take a look at some of the videos we've uploaded to www.youtube.com/thefavilles
We uploaded some before and after videos and will continue to track his progress. Subscribe to our YouTube channel so you won't miss any videos. You'll get an email any time we add a video.
Since I was off work today and didn't have to spend the day at Andrew's school, I started "Project Organize"!! I took 4 hours today to sort and dump papers, file bills & receipts, put away 2 school years of the boys work for keepsakes and feel good about how clean my kitchen and their bedrooms are becoming. Day 2 tomorrow and hoping I can take another chunk out of the mess and clutter around here.

(below is the first video in the series in the progress of Andrew from Pre-Op to recovery. Visit our YouTube channel to see more videos... www.youtube.com/thefavilles)

End to a busy day...

We were updating via iPhone earlier today and the rest of the day way pretty busy, so we are just getting around to updating now. No news is good news! Andrew's surgery went great today. They took him in to surgery around 11am. Surgery itself was only about a half hour long. The surgeon called us to let us know Andrew was in recovery and doing well. The did the lengthening on just the left side and only on his heel cord. There's a small incision just above his ankle.
This little warrior didn't even cry once! Not at ALL! I have no idea how he does all this and has absolutely no fear of doctors or hospitals. It only took him a few minutes in recovery to be sent to his room. He did great coming out of anesthesia without any problems. He did develop a rash a few hours afterward but it passed quickly. We think it could have been something they gave him or simply a heat rash. Besides that, it was pretty smooth. Andrew was able to keep everything down and enjoyed his popsicle and juice. So well, they allowed us to come back to the hotel for the night since it's attached to the hospital. Andrew was feeling well and wanted to go for a little tour of St. Louis. (in the wheelchair of course). So we walked a few blocks to see the shops and fountains. Andrew enjoyed getting outdoors today in the beautiful weather. He was still not back to normal but was willing to eat so we decided to keep it simple and get him some mac & cheese. Something that will be easy on the stomach. And if you know how Andrew eats, you'll know he's not 100% when he doesn't even finish it and has the ability to sit through our dinner without asking for anything to eat and not wanting ice cream or cookies. We headed back to the room and he's zonked out as I type this. He does not like his meds so tomorrow when we go back to meet with the surgeon and Physical Therapist, we'll have to be sure they can give us some more flavoring or we're going to have a hard time getting him to take it. Otherwise, everything went wonderful and the staff at St. Louis Children's hospital was, as always, amazing! Truly worth the trip just for the friendly staff and community. Even throughout the city, everyone is so pleasant & helpful. I've never been anywhere where the people were so friendly!
So we can take a little breath now and we'll head back to the hospital in the morning to see how Andrew's doing and for some more assessments and physical therapy & so the surgeon can check on him.
Pictures to come soon through Shutterfly. They'll be added to the previous "St. Louis..." album.
Thank you all again for the wonderful support & good wishes for Andrew. It means a lot to us to have such wonderful caring, loving family and friends!

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Andrew - Surgery St. Louis

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We're waiting....

We arrived at the surgical waiting room at 8:30 this morning. We met with the surgeons and doctors who'll be taking care of Andrew today. He also met with the child care team who explained the surgery and had pics of the OR for Andrew to see and know what to expect. They gave him a little something to calm his nerves which has made him a little loopy. He seemed fine and not afraid at all. They just took him in to the OR at 11am. Now we're just waiting to hear him come put of surgery to recovery. He's a brave boy! We'll let you know when he's out of recovery which they say could be as little as an hour up to a few hours depending on what they encounter during the surgery and whether they need to do more than expected.
We're hanging in there ok. Trying to remind ourselves that this should be a piece of cake compared to his last surgery.

Surgery tomorrow...

Sean & Andrew at St. Louis Children's Hospital Center for Cerebral Palsy Spasticity

Just to let everyone know that surgery is scheduled for 8:30 am (9:30 Eastern time). Andrew is just sad he can't have breakfast tomorrow. We had a nice dinner at Applebees to end a busy day. After all his appointments today Andrew wanted to go to the St. Louis zoo, so we decided to have a little fun while we were here and bring him to the zoo. His favorite part was the penguins. The weather is beautiful out here... warm & in the high 70s.
Dr. Dobbs said surgery is only an hour long. As long as surgery goes smooth and he comes out of anesthesia well, we should be able to leave the hospital that day. Thankfully since he is not having the multiple surgeries they initially though he was having, we shouldn't have to stay in the hospital overnight. The doctor said that most children do very well and have minimal side effects or pain, so there is no reason he would have to be admitted. Another bit of good news! Now we hope that everything goes smooth tomorrow.

Andrew hanging out on the rooftop gardens at the hospital (

Take a virtual tour - click here)

Sean & I taken by Andrew on the rooftop garden at St. Louis Children's

Rooftop garden at St. Louis Children's

Rooftop garden at St. Louis Children's

St. Louis Zoo

St. Louis Zoo

The penguins at St. Louis Zoo, Andrew's Favorite

The penguins at St. Louis Zoo, Andrew's Favorite

Andrew on the carousel - St. Louis Zoo

Sean letting Andrew's wheelchair take off down the ramp - St. Louis Zoo

Snakes at the St. Louis Zoo

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Everything went well today...

Andrew's appointment with the Physical Therapy team went really well. They did his evaluation and measurements and we're excited to hear that his range of motion is the same on his right leg & ankle as it was in October 2007. His left leg has actually improved a bit which was a surprise since it is the leg that he will be having the surgery on. But it has not improved enough to dismiss the lengthening surgery.
We met with Dr. Park later in the day and he was optimistic that Andrew will recover quite well from the lengthening surgery. He was pleased with his progress but stressed that an increase in physical therapy and stretching is best for his progress. He also agrees with Dr. Dobbs in having just the PERCS on the left leg and to leave the right alone at this time. They both feel that doing just the left leg will trigger his right side to correct itself. Which is all great news. His hamstrings are tight but not to the point of needing them lengthened at this time. His heel cords are the ones causing all of the walking problems that he has. Dr. Park is confident that after this surgery and with continued PT and stretching that Andrew will be able to walk more normal. He will have no more falling, no more crouching and less foot dragging. He should also be able to walk with a better heel strike which will improve his posture and balance. He's pushing Andrew to do more physical activities like soccer, karate, basketball etc. The more exercise the better. He is stressing that more running is the best exercise for him. He was pleased to hear that Andrew ran the half mile fun run this summer and is very proud of him. He was positive that the Selective Dorsal Rhizotomy surgery he had almost 4 years ago had a huge impact on his Cerebral Palsy. So much that he said that Andrew would never have been able to run in that race at all if it weren't for the SDR. He really wants Andrew to throw away his leg braces after he's healed from surgery. We see that the braces are having an impact on his running and walking abilities even though it is helping to stretch him out. We all HATE the braces so we're all excited to hear this.
We're so thankful to have such a great neurosurgeon working for Andrew and always keeping him in his best interest.

So far so good...

We met with Dr. Dobbs, the orthopedic surgeon doing Andrew's surgery. He still has Physical Therapy and has to meet with Dr. Park the neurosurgeon, but D. Dobbs had some promising news for us. He tells us Andrew will be getting the PERCS tendon lengthening in his left leg only and only one out of the three areas!! This means a shorter surgery, quicker recovery and minimal pain! We're both releaved but still nervous about how soon he'll have to come back for more. The doctor tells us that there is still the possibility that he will need more in the future but right now he says he can get great results with minimal surgery.
More updates later when we see Neuro & PT.

We're Here

We arrived in St. Louis with no problems. Our flights were all on time and we even got here 30 minutes early. Checked in to the hotel and took Andrew for ice cream.
As of right now we are waiting to be seen by the Orthopedic Surgeon at St. Louis Childrens Hospital. We will update as soon as we are done here.

September 2010

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