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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Corn Maze at Rulfs Orchard

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Great Family weekend...

We had a great time with the family this weekend. Saturday we decided to have a special day for Matthew in light of all the attention Andrew's been getting these days. We thought we'd give him the ability to decide our day on Saturday. He had a great soccer game to start off with. He scored a goal in the first 2 minutes of the game against a team that has some great players. His team won 5-2. They did a great job of passing and dribbling. So proud of them and we really enjoy the watching soccer. After the game Matthew wanted to go to the corn maze and pumpkin patch to pick out some pumpkins to decorate. The boys got lost in the maze and of course we had to go in to get them. We continued the maze with them and spent over 45 minutes trying to find our way. We finally all gave up and sneaked through the corn to find the exit. Matthew picked a few large pumpkins and we got some fresh baked sugar donuts from Rulf's orchard. Mmm, mmmm.

When we got home Matthew wanted to decorate for Halloween. It's a bit earlier than we'd like, but it was his day so we got the boxes down and started to decorate. Matthew thought we should have a few more things and convinced Daddy to make a trip to the store with him to get this moving giant spider he's been asking for since last year. So along with some grave stones, skeletons, ghosts and spiders, we've got some decorating done. Hopefully the pumpkins will last until Halloween. We even picked up a few mums for the front stoop with some gourds.

We're only a few days away from our trip and we've got all our bags packed. It's a good thing we started packing because we were missing the video camera charger and some paperwork that never got filled out completely. So now we are all set to go. Time for a good night sleep for everyone.

We are one week away from Andrew's Surgery....

As promised, although it was weeks ago, I am providing a link to the description of the surgery Andrew will be having. CLICK HERE
It explains the procedure but Andrew will be having this surgery at St. Louis Children's Hospital. The same hospital where he had his Selective Dorsal Rhizotomy (SDR). His neurosurgeon there is who referred us to the Orthopedic doctor who will be doing this surgery too.
Andrew will be having a Selective Percutaneous Myofascial Lengthening, (SPML). The reason for this is that even though he had SDR when he was 3, Andrew still continues to have tight tendons in his legs. Mostly the left. He walks on his toes and tends to fall a lot more lately as well as using a crouched gait because his tendons are so tight. We've had him wearing AFO braces on his legs and have increased his PT and it does not seem to be helping at this time. Even though the spasticity was eliminated with the SDR, children with Cerebral Palsy still have tightness which only stretching and surgery can help. It was inevitable that he would need this lengthening surgery but since Andrew recovered and did so well after his SDR that we were hopeful to one of the few who's child would not need the lengthening surgery.
We will be leaving next Tuesday for St. Louis and hope to have an easy flight without delays or problems. He will be seeing Dr. Park the next day after we arrive for a follow-up Neurosurgery visit as well as Physical Therapy, assessments, xrays and whatever other tests he'll need pre-op. We then meet with Dr. Dobbs for his Orthopedic Surgery appointment. They will explain the procedure in detail and let us know what to expect during and after surgery. Andrew's surgery is scheduled for the following day on the 30th. He'll be staying in the hospital and we hope all goes well and we should be able to leave by Friday.
Our anxiety levels are rising as the date is near, but Andrew is hopeful that this will give him a chance at a better life. One where he won't have to use the leg braces anymore. One where he won't have as much PT. He really wants to play basketball and wants to try wrestling, so he's hoping this will give him that chance. As parents we always want the best for our children and right now, we feel like this is the best we can do for now. We can at least try to provide him with the chance to be like the other 7 year old boys.
We'll keep you all updated on his progress. We'll also be getting ready to post before and after video and pictures which will also be on Andrew's blog too. We'll post links and updates as soon as we have anything.
Thank you all for your support.

YAY...

For any of you who may have seen our Facebook pages or our Box on the top of our blog.... We've all been voting daily for the Hannah's Hope Fund for GAN to win a Pepsi Refresh Project Grant of $250,000 and we're all so excited that they won! It's a national contest where entrants send in an application to win set amounts of money. If your application gets accepted, the nation gets to vote for their favorite idea... And they won! If you want to read more about Hannah and her illness visit www.hannahshopefund.org.
We had another proud parent moment last Saturday when Matthew decided he wanted to do the Run For Jon. (www.runforjon.org to find out more about this event). The kids fun run was suppose to be a 1 mile run but ended up shorter. So Matthew decided he wanted to do the 2.5 mile run after the fun run. I agreed to run with him. I was amazed at this 6 year old's ability to keep up with adults in the 2.5 mile trek through the apple orchards. He completed the race with a huge smile as event organizers and participants who recognized him from other kids fun runs, cheered for him as he came to the finish line and ahead of two other runners (of course I was one of them :) He was the youngest runner to compete in the event and the other youngest child was 10!

We're fast approaching the first day of school. The boys are excited to get back into a routine and are excited to be back with their friends after an eventful summer. Pool time is limited in these cool early September days. We think it's almost time to close it up for the season but we're hopeful to get a few more days in. Matthew is looking forward to his first soccer game next weekend. Andrew decided he didn't want to play after the first practice since he has a hard time keeping up with the other children. He asked if he could do wrestling instead. But with his surgery coming up in a few weeks we don't know what the future holds for him as far as his recovery goes. As much as we'd love to see him enjoying a sport he may be good at, we're also leery of what's to come after surgery.
As far as his surgery goes, we've spoken to the neurosurgeon and the Orthopedic surgeons in St. Louis and they are both pretty confident that this lengthening surgery will be a success. Andrew has been explained the procedure and we've given him the choice of whether he wants to go through with it or not. He's chosen to go ahead with surgery and he's not the least bit nervous about it. It's amazing that a boy who's been poked, prodded, cut, and been through hell, is not apprehensive about this surgery or doctors & hospitals at all. More on the surgery to come. Maybe this week we can post about what the surgery entails and what it's all about and what the expected outcome will be. But for now, We're going to try to enjoy our Labor Day weekend, our vacation and our little mini-vacation away just the two of us. We're taking a short trip to Lake Placid and Lake George. Going to do some kayaking, taking in the beautiful sights of the Adirondacks and maybe even a little shopping to celebrate our 9 year anniversary.

It's been a crazy week...

We had an extremely busy work week and we're looking forward to the weekend. This may be the last farewell to summer with temps in the 80s all weekend... it's been 70s for 2 weeks. So we're looking forward to the warm weather. Hoping to get some more of the deck stained. Sean's playing in a golf tournament on Saturday and the Run For Jon is Saturday too. 

And if you're wondering what all the "voting" is about... We're asking everyone to vote for the Hannah's Hope Fund. If you'd like more information please let us know. Her website is www.hannahshopefund.org. A friend of ours' little girl Hannah was diagnosed with Giant Axonal Neuropathy (GAN). GAN patients lose the ability to speak and swallow and become quadriplegics and die in their 20's. We're directing everyone to Pepsi Refresh Project (click here) to vote for Hannah.  Hannah's Hope Fund is hoping to win a $250,000 grant to help with their clinical trial to help treat GAN and hopefully find a cure for this disease. There's only 5 days left to vote and Hannah is in 4th place and need to be in 1st or 2nd to qualify for the grant. With all your help, we can help them do it! It costs you nothing but a few minutes of your time. You can Text* 101885 to Pepsi (73774) as well as adding the facebook application.

We said goodbye to the boys' nanny today. She was an amazing nanny and we're sad to see her go, but she's left for college to get a degree in elementary education. I'm confident that she'll make a great teacher some day. She took a lot of stress off us this summer and I'm going to miss her. The boys were asking after she left "when is Miss Ari coming back?" And I had to explain that she is going far away and she won't be here anymore. I don't think they understood what it meant until it clicked with Matthew and he ran out the door after her. So sweet. They plan to write her letters and share pictures and we hope she'll be home on break soon to visit and hoping she considers being the boys' nanny again next summer. Which brought us to a deep conversation on what it means to "Miss" someone. I explained the best I possibly could about what "miss you" means. Andrew said "I think it means when someone leaves and I think about them a lot and it makes me sad that I don't see them anymore"... He said it's like when he thinks about all the fun he had with Miss Samantha & Miss Rebecca (Their cousins). We went to visit them in NJ and see their Great Gram & Pop. Andrew said he misses them and it makes him sad he can't see them more and that they live so far away. We had a great time in Jersey and hope to be able to go back soon. It's hard living so far away from family.

On another note... Andrew had an eye doctor appointment today and the eye doctor said that he still does not see "3D"... (there goes Sean's idea for a new tv) BUT his vision has improved and he no longer needs to wear glasses all the time. He only needs them for reading now! YAY! But now I'm sure we'll have many more lost pairs of glasses since he'll be taking them on & off as needed. I wish the dollar store made reading glasses for kids too! But it's encouraging that he only needs them for reading. They won't consider bifocals because of his balance and gait issues. Bifocals can throw off your balance. He still has some problems with visual perception, his depth of field and peripheral vision. But not having to wear glasses all the time is an improvement. I love his new Sketchers glasses. They are very cool and stylish and now I wish he could wear them all the time. He definitely looks more grown up with them on.

guess we need a photo update...

I just realized that I need to update our blog header photos! wow those are old. I guess I will wjavascript:void(0)hen I find some time

2010 Sand Sculpture Competition

Looks like summer is coming to an end...

Although we've had a wonderful fun filled summer, it seems as though it may be coming to an end. The boys still enjoy the pool just about every day, but the sun is getting lower in the sky and daylight hours are starting to lessen. The cool evenings and the cold rain, even for a day, really lowers the pool temperature. Too cold for me. The boys don't seem to mind so they'll get another month out of it.

Matthew completed just about every week at the fun runs at the local park. He did really well and was sad to see it end. Andrew did his first 1/2 mile run a few weeks ago and did a great job! We were so proud of him for completing the whole race and even came in ahead of 2 other children! Talk about so proud it brought tears to our eyes. The same week, Matthew completed his first 1 mile run with a time of 10:40! And that was in 85 degree weather. He'll be competing in the Run For Jon this weekend. He's definitely a natural and wants better running shoes.
Matthew will be starting up Soccer this fall. His first practice is tomorrow. He's so excited since we were unable to register in time last year.
The boys also entered the Sand Sculpture Contest at our beach and came in 2nd place for their age group by building Yankee Stadium! they won $20! They're so creative. here's the link to the photo gallery from the Press-Republican website... CLICK HERE

We've only just begun school shopping this year. Our stores are limited for boy's school clothes and Andrew won't wear anything but dress pants and button down shirts and they have to be wrinkle free. Walmart & Target are just not cutting it.
On another note, our Nanny (Arihanna) that we hired this summer has worked out amazingly! Not only does she entertain the boys all day, but she brings them everywhere they need to go, makes sure they clean their rooms, make their beds, brush their teeth and to top it all off, she does homework time with them to keep them on track for the coming school year! Unfortunately she's leaving us on Thursday to continue her college education and she'll be too far to watch the boys after school. We're going to miss her so much. I've had an extremely reduced stress summer... last year was going to be the death of me. This summer, she was able to bring Andrew to all his therapy appointments, was there on time every time! She had them at the library once a week, brought them to the beach, out to the movies, lunch... I could go on forever at how much less stressful she made our summer. Here's hoping she will be back next summer.
As for Sean & I, busy as usual. We're getting ready to plan our trip to St. Louis for Andrew's Surgery at the end of September. We'll post more details on the surgery when we get all of the information. We've spoken the the neurosurgeon and the Orthopedic surgeon and we're pretty hopeful this will be the answer to Andrew's toe walking! ((Fingers crossed))

School Portraits

Click on the image to see the boys grow through their school portraits.

Catching up...

Photo taken at Six Flags June 2010

It seems as though the months have flown by since we've updated our family blog. You may be anxious to hear how Matthew's first year of school went in kindergarten or how Andrew did in first grade... Well, there just isn't enough room to include it all or you'd be reading for hours. So lets just say it was a pretty uneventful school year. Matthew adjusted well to Kindergarten and looks forward to first grade in the fall. Of course he made lots of friends and did well in school. Andrew, again did well in first grade despite our fears of the higher expectations. He continues to receive PT, OT, Speech and all his other support staff regularly help him each day.
Now that summer is here, we've hired a nanny who is working out really well! The boys are happy to be home for the summer and we're happy to have the stress taking off of bringing Andrew to therapy everyday during the summer and bringing the boys to camp etc. She's been really great at helping the boys really learn this summer by doing homework time, library time and daily outings like blueberry picking and the park. We've also installed a pool this year!! Our greatest purchase to date for entertaining. Not only do the boys love the pool, but we do too and it gave us a big excuse to finally replace our failing deck. Now we've got a great place to sit, relax and entertain with no worries of the whole thing collapsing. We were lucky to have an acquaintance of Sean's give us their pool that they didn't want, so we were able to finally afford it. Andrew's physical therapist for the summer is starting aquatic therapy on Wednesday so this should be interesting but hopefully successful.
Sean and I continue to work hard and the summer has been filled with fun outings. We went camping in June/July, which was beautiful weather the whole time. We took the boys on a surprise trip to Six Flags and Lake George on the last day of school. We surprise them by bringing them to dinner, stayed in a hotel with a waterslide and surprised them with the theme park & waterpark the next day. Their faces were priceless.
Sean competed in the Plattsburgh Half Marathon this past April and did great for his first time. He seems to be a natural runner. Sean & I competed in the Lake Placid Half Marathon and ran together the whole way. It was quite the challenge and hope to be able to go again next year. We both have been running a lot and feel great about staying healthy. We also competed in the Boilermaker 15k in Utica which was a huge race through Utica that ends at a brewery! It was an amazing race along with about 14,000 other entrants in 80+ degree heat. And a few other smaller local 5k races.
Matthew has been happily competing in the local fun runs and has gotten quite competitive about his running. He won his first race a few weeks ago and we're so proud of him. He also did great playing his first season of coach pitch baseball. Andrew was unable to continue his Hippotherapy this summer but we hope to be able to get him in and riding the horses real soon. Andrew is happy enough to cheer us all on... although we can tell that sometimes he feels left out. It's difficult to find activities to get him into with is disability.
So we've been pretty busy lately and apologize to all of you who follow our family's blog... We'll try to update more frequently... Especially since we are looking down the road at Andrew having another surgery in September. We'll update more as the information comes to us. The blogs were a great way to update you all on his progress and recovery during his last surgery, so we'll be sure to keep this up and running again.