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))