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!
Subscribe To Our Blog
Posts
All Comments
Thursday, September 30, 2010
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.
We're hanging in there ok. Trying to remind ourselves that this should be a piece of cake compared to his last surgery.
Wednesday, September 29, 2010
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 |
_____________________________________________________________________
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.
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.
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.
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.
Sunday, September 26, 2010
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.
Tuesday, September 21, 2010
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.
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.
Sunday, September 5, 2010
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.
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.
Subscribe to:
Posts (Atom)