Nicolaro

Yay! we made it.  We went down to Baltimore on Monday and received the good news that Paul is cleared to walk and weight-bear.  He will be able to do whatever he wants-- as tolerated.  He will still be out of gym and jumping is not allowed, but other than that he is good to go.  He will start off slow because his legs are wobbly and weak.  I am told he will get his strength back quickly, but we should take it slow.  His knee bends are 93 on his right and 75 on his left.  We are thrilled with those numbers.  His left leg has always seemed much tighter than the right for some reason.  This week was a good week for him to get back gradually, we had a half day on Tuesday and there will be no school Thursday and Friday.  This will really give him time to adjust to his new legs. He will use his walker and wheelchair throughout until he is stable and comfortable to walk alone.  He began PT today and will have PT 3xper week until the doctor is content with his progress to drop us down to 2 x per week.  Paul is overjoyed and understands this will be a slow process, but he is eager to get back to complete independence.  He does like me to cater to him and still enjoys a good foot rub, but who could blame him. He has a new excuse for getting his feet rubbed now that he is walking again.  Because he has been off his feet for so long(4 weeks now) his muscles have contracted, so now they need to be stretched out again. He is a little frustrated by his aching feet, but we assured him they will feel better the more he walks on them.  Thank you to everyone who has stuck with us through this ordeal.  We are truly grateful for your love, support and prayers.  Your messages mean a lot to us and Paul enjoys reading them.  Please know that you are all in our prayers too; we thank God every day for giving us such wonderful people in our lives. carepages.com - Paulinator

We are at the half way point of the final phase. It has been two weeks since Paul's removal and he is doing an awesome job. His wounds are healing really well and his spirits are great. I thought he might get depressed having to go back into the wheelchair full time but it is the opposite. Even the teachers at school said they thought he was happy before the removal, but now he seems like a new person. It is hard to describe. His legs look fantastic and he hasn't had any pain. He has been sleeping though the night this last week too. YAY for all of us.

We went to a wonderful Halloween party last night, given by our good friends the Genco's. Paul looks forward to this party all year. He wanted me to make his wheelchair into a tank. We think it turned out pretty good. Thanks to the Genco's for a great party, Paul danced the night away from his wheelchair.

His next appointment with Dr. Standard is on November 7th. We should get clearance to weight bear at that point. He is ready to go! His favorite thing to do now is cross his legs. He looks like MIke when he lays back, puts his hands behind his head and crosses his legs. I catch him admiring his new legs all the time. He also is extemely limber from all the PT I guess, he can put both of his legs behind his head. Wierd! Anyway, he is enjoying being able to roll around and sleep on his side, something he couldn't do for almost 7 months. He is also excited about wearing jeans. Funny how we forget about the little things in life.

We made it through removal! Paul had his removal surgery on Friday at 12:45. The surgery took 2 hours and he came out of anesthesia really well. He had some anxiety going into surgery, but all of the doctors and nurses were fantastic about helping him calm down. 4 of the doctors went to Rutgers, so when they saw Paul's "Paulinator" bear wearing a Rutger's shirt they had a good time with it. They also loved the "Perry the Platapus" Paul had with him too. They both(the stuffed animals) went into surgery with Paul. Dr. Standard came out and said all went well. Everything came out easily and the sites looked nice and clean.
We spent one night in the hospital and went back to the Ronald McDonald house for a couple of days. Paul really did not have much pain at all. He did not use any pain medication the first night and only used it a few times the next morning. They had him on a morphine pump which he could press when he needed. He didn't complain much. He said his sides were sore and of course he wanted his feet rubbed. That's all it took was a bunch of foot rubs and a little pain medication. Saturday we stayed in and relaxed. We sat outside for a few hours, the weather was beautiful. Sunday we took Paul to the aquarium and for a long walk around the Harbor area. Dr. Standard said we could go home as soon as Paul felt up to it, so we headed home today. (Monday, 3 days after surgery)
We had some PT in the hospital. It was very light exercises. Some heel slides, leg lifts and ankle exercises. She said to be as gentle as possible and not to push anything. As time goes on he will move more and more.  Paul will now spend the next 4 weeks in the wheel chair.  Dr. Standard said by the 4th week it is going to be hard to keep him down.( I pray he is right)By Christmas he should be running around.
Paul is happy to be home and in no rush to take the bandages off. His legs are all bandaged up, from heel to tush with gauze and ace bandages. The doctor said to wait for 3 or 4 days for everything to scab up and then remove the bandages. He said the guaze will be very bloody, but after we wash everything down we will be surprised at how small the holes are. I am really not looking forward to this. Paul hates the sight of blood. What he can see around the ace bandages grosses him out and he is terrified to take them off. I'll let you know how that goes.

 At 2:45 pm Dr Standard emerged from the OR and let us know everything went perfectly!  Paul is in Recovery and did well.  All the hardware has been removed.  We will add further updates when time permits.  Thank you for all your prayers - Mike and Lucy.

One more day before removal.  We head out today for Baltimore.  Please keep Paul in your prayers tomorrow.  His surgery is scheduled for 8:30.We will be in the hospital overnight and then back to the Ronald McDonald House for a few days.  As soon as he is feeling up to it we will be heading home.  He has to keep his bandages on for at least 3 days, then I  am the lucky one that gets to remove all the bandages and see his nice new long legs.  He will be non-weight bearing for 4 weeks at which point we see Dr. Standard again and will hopefully get the go ahead to walk.

 Thank you all for your prayers. *With God all things are possible*

We are on a single digit count down.  9 days left.  We can't even imagine it.  The fixators have become so much of our lives, it is hard to believe the time is here for removal.  We can't wait to see Paul's new legs without the fixators.  

This weekend we stayed at the Ronald McDonald House  for one night and were able to see our good friends Dona, Hannah, Milton and Jabez.  It was like a little reunion.  Paul was happy to see them and they all fell right back into their routine at the house.

On Monday, we had our final visit before surgery. After a 4 hour wait in the office, we finally saw Dr. Standard and he said Paul looks great.  His bones have healed nicely and he is ready for removal.  He said his hip extensions were a little tight (most liiely because of sitting ALL day at school)and would like us to work on that for the next two weeks so that he doesn't have to do a release of the hip muscles.  He said Paul is right on the borderline of needing it, so if we could help it, we want to stretch that muscle out as much as we can before surgery.  He will decide the day of surgery if he needs it or not.  This means Paul will have to lay on his belly and stretch his leg back to extend the hip.  We have a few other exercises to do too. It is very common to require a hip release, but we will do our best to keep from having it.

Paul has still not received proper seating  at school.  We are doing our best, with the help of his aide,to keep him comfortable during school.  The school is suppose to order him a chair.  It seems that the process of helping a child in need is so long that they by the time you get the help, you may not need it anymore.  Mike and I have been trying to get things to move faster, it has become a full time job.Today they told me it might be another 2 weeks before they even order it.  The chair then takes 4 to 6 weeks for delivery. Right now he is in a chair with his feet on a crate!  In the entire school district there is not one chair that is suitable to help my son.  I am suppose to hear back today from the supervisor who will approve the order of the chair.

We are set for Removal on October 7, 2011. The procedure takes about 2 and half hours. Paul will stay in the hospital just overnight and then we will head to the RMH. Dr. Standard said Paul should be feeling good in just a day or so. After the first week he should be able to stand to transfer. and then 3 more weeks from there he will be up and ready to go.  Dr. Standard said it could take up to 6 months for total recovery.

 
Thank you all for your prayers.  keep them coming, we are almost through this first arduous journey. Thanks for hanging in there with us.

Paul went for a visit on Thursday August 25th.  We recieved great news. Dr. Standard said Paul's bones look great and he wants to schedule removal for October.  We will go back in 4 weeks for a check up and if all looks good---REMOVAL!!!!  We aslo scheduled a PT evaluation, they also said Paul lookes fantastic and were very pleased with how far he has come.  He was so excited to see everyone.  Sunni and Kim were there, Moshe was on vacationa and Travis went back to Grad school in California.  Paul was disappointed that he didn't get to see them, but was proud of himself for being able to walk into therapy.  He even did a little dance for them! 

He is doing very well in therapy at home and Dr. Standard said we can go down to 3x per week!  That will be so great once school starts, I was stressing about getting to therapy every day after school.  At least he will have somewhat of a break.  After removal he will have to be nonweightbearing for 4 weeks, which means back to the wheelchair.  He is not going to be happy about that , but at least he will not have his fixators on.  That is the last phase.  He will have a rod put in his femur for strength to ensure no fractures or breaks.  That will stay in his femurs until he is ready for the next surgery or they bother him down the road. 

He has had a few infections since I last wrote, but the antibiotics take care of it within a few days.  The doctor assures me that he can be on these antibiotics practically the entire time and it will not harm him.  I pray he is right.  That has been the major issue that we have dealt with.   We begin the count down until removal.  

Have a good school year everyone.

Paul's therapy is going well.  Thank you to all of you who are hanging in through this long and difficult process.  This week Paul did really well with his measurements.  His knees are looking much better and he did get to 60 degrees on his right knee, with a good bend from his therapist.  His left leg seems to be tighter but Katie did get it to bend to 58!  This is a big jump from last week when he was at 52(Left) and 58(right knee).  His left leg has been having some issues.  His top right femur pin developed a blister like thing between the pins.  The PA said it might be a granuloma (tissue pushing out from inside).  We put him on an antibiotic two weeks ago for that, but it did not go down.  He also has quite a bit of discharge from the same pinsite.  We do not know if the two are related.  The drainage is clear,honey color, but is enough to soak the guaze by the end of the day.  This Friday the area became so painful he could not continue therapy.  I spoke with Allyson the PA who relayed the information back to Dr. Standard.  We decided to try a stronger antibiotic (bactrim).  He has been on that for 6 days now and we definitely see an improvement.  The blister type thing has also gone down, so I am thinking it was related to the infection.  The drainage is still there, but it has also lessened.  Other than that, he has been doing really well.  The antibiotics work quickly (when they work) so he feels better within two days.  His walking is improving and his spirits are great.  He has become so much more independent.  He is able to get on and off the chair, walk around the house, and use the bathroom independently.  He is really starting to see the benefits of the entire ordeal.  We were at a friend's house (the Genco's) the other day and he was able to see the  trays of food on the counter.  He was so happy to be able to look and choose what he wanted.  It is the daily things that we don't even think about that make this journey worth it.

We wish everyone a great school year.  Those of you who are off to college we wish you all the best!  We love you.

Another week down.  Paul seems to have developed what the doctor calls a granuloma on a pinsite close to his ankle.  It basically is soft tissue rising up through the pinsite area.  It is caused by all the new movement in his ankles.  It is painful, so we did not finish PT on Friday.  Saturday we decided to do most of his exercises in the pool so he wouldn't have to put pressure on the ankle.   We started yet another round of antibiotics to be on the safe side, it may or may not be an infection.  He is still walking around well and is happy most of the time. The therapists started him on a step, so he is going up and down one small step.  He even took some steps without his walker!  His knee bends reached 50 degrees last Monday.  That was great news, we hope to continue with greater range of motion each week, hopefully gaining 5 degrees a week.  When we reach 70 we will be able to cut back on  the PT schedule to 3 days per week. Happy birthday to Samantha, MIchael and Nico who had birthdays this month. 

Paul has been home for two weeks and he has been working hard to get his range of motion back.  THe new physical therapy is wonderful and all the girls are great.  Paul likes them all.  He will continue to go 5 days a week until he gets 70 percent range of motion back in his knees.  He has good range in his ankles and hips, but the knees are slow to come back.  On Friday he received a new posterior walker and LOVES it.  He feels free and independent and refuses to go in the wheelchair now. YAY.  He is walking all over the house!  He has been swimming a lot, so he is getting pool therapy also.  Pin care has improved too.  We have had a busy few weeks since we have been home.  We arrived home on the 29th of June and left for vacation on the 30th.  We came back on the 10th of July and started PT here on the 11th.  PT takes up the majority of our day, by the time we get home and washed up it is mid afternoon.  We are so happy to be home, depression is no longer an issue. Paul missed everyone and is excited to be back and show everyone how far he has come.  He continues to amaze me.

We are vacationing at Ocean Isle Beach in North Carolina.  We make this trip every year to meet with my side of the family.  The weather has been absolutely perfect as it seems to be here every year.

Paul is walking more each day.  It is a big struggle for him and he fights with us each time we make him walk for a few minutes.  He is under the impression that if he just waits everything will heal fine.  We explained the importance of putting weight on his bones as they heal and the importance of using his legs as much as possible.

We got him to put his feet in the ocean one day.  He enjoyed the experience but the beach was a little windy so he was very worried about all the sand.  He eventually went back in the beach house where he has spent most of his time with his cousins.

Michael continues to be the fishermen of the family.  He caught three sharks yesterday including the fishing pool winner which netted him $92.00! 

Samantha spends all her time with her cousins, we only get reported sightings of her now and then.  She has been a big help watching Paul when Lucy and I try to get some time on the beach.

We will post some pictures when we get home.  Love to all.

I apologize for not updating the site as much as I would like to update it.  Life gets very busy sometimes.

Once again thank you everyone.  Here are some outstanding Thank you's that I have been meaning to post.  Thank you to Michelle Pron and the Pron home schooling gang that made so many nice cards for Paul.  Thank you to Frank Carvalho who resurrected Flat Stanley from Paul's Kindergarten class. Frank took some great pictures of Flat Stanley and sent them to us.  Paul was extremely entertained when he saw his old Flat Stanley is still traveling the world.

Thank you to My Sister Christina and the Meadows Clan for the nice things you sent to Paul.  Thank you to my Sister Lisa for stopping by the house all the way from Florida to bring Paul a nice gift and visit for the day.  It was great to see Lisa and Kylie.  Of course we can't forget Aunt Anner who tagged along with Theresa to the Ronald McDonald House to stay with Lucy and Paul over night. Ann Marie Paid the RMH bill - we are thankful for your generosity, (even though I forgot to tell Lucy and she has spoke to Ann Marie twice and didn't know to thank her so now I am in hot water) - Thanks Anner!

Paul update is as follows:  He is doing great.  Still doing some final turns.  Has an appointment with Dr. Standard this morning where we expect him to get released to finish his PT in NJ!  Lucy will get one or two days more of PT in Baltimore and then head home where we are planning to leave for our Vacation in North Carolina.  It should be interesting with Paul, but we are all going to do our best to make sure he has a great time.  I promise more pictures when I can. 

God Bless everyone - We feel like we are about to make it over the second big hurdle by getting Paul home.  The journey to this point could not have been bearable if not for the wonderful support of Family and Friends.

Keegan - Thank you for the gift.  I sent it down to Baltimore with Paul's Brother and Sister - they left it in Grandma's trunk which came back to NJ!  So Paul knows about it, but has not seen it yet.  I will try to get video of him opening it when we finally get it to him.  Sorry for the delay, and thanks for your patience.  You are a good friend.

Paul's appointment went well this morning.  He has a total of 3 3/4 inches!  Dr. Standarnd says he needs just a little bit more turning to make everything equal and straight.  They gave Lucy a new turning schedule that will last to next Monday when Paul will be released to come home!

Of course we were hoping for today, but Paul is very excited to only have one more week in Baltimore.  To make his week even better, Samantha and Michael will be going down now that they are out of school.

We also got a delivery today from Keegan.  I will make sure the box gets down to Paul.  Thanks Keegan!

Paul had a nice weekend at home.  He did not want to leave to go back to Baltimore.  He had a "meltdown" that lasted over an hour, but like the great trooper that he is, he came out of it.  He settled back in at Baltimore and is looking forward to his next doctor's visit on 6/20 to learn when he will be coming home.

He is doing well in therapy, but needs to get more movement in one knee.  He is working hard to get there.

The Gencos sent another care package as well as the Meadows.  Paul loved both gifts.  Aunt Biddy contines to send Paul cards which he enjoys reading.  Thank you to everyone.

Paul is doing very well today.  He was standing in Therapy without any pain.  Lucy says he was actually enjoying standing!  Nice work Paul.

One knee still hurts him.  They continue to turn the pins three times a day on the top.  Looking forward to Monday's doctor visit.

Almost got Lucy a handicap hang tag today.  I presented all the paperwork but they insisted on a copy of Lucy's drivers license instead of mine. Since she will be the main driver for Paul, this makes sense. 

Paul had a tough night waking several time.  

Depending on traffic Lucy and Paul plan to journey home tonight or tomorrow morning and stay for the weekend.  It is so good to have them home even if only for a couple days.

I apologize for not writing everyday.  I have been extremely busy.  The good news is that there isn't too much to report.  Paul is doing well.  He is only turning the upper section on his legs.  I though it was the bottom section, but it turns out they are still turning on the top.  He is doing pretty well with pain.

Lucy and Paul are coming home again this weekend.  We thought we were going down to Baltimore, but Michael and Samantha are studying hard for finals.

Paul had a great time at home this weekend.  We had planned a trip down the shore, but everyone decided to just hang around at home together. He got very upset when it was time to go back.

Today's Dr's appointment went very well.  Everything is still going great.  The Tibia's are 4.7 centimeters and Fibulas' are 4.0 centimeters.  We are stopping the lengthening on the Tibia's as they are as long as planned!  Paul is having some knee pain because the Tibias are falling out of the knee socket from lengthening so rapidly.  This will correct itself as his legs continue to grow on their own.  The plan right now is to continue lengthening the Fibulas' until June 20th and then come home!!  Paul has Dr. Appointment on the 20th.  If all goes well he will stop lengthening and be released to come home and have Physical Therapy in New Jersey.  Keep him in your prayers.  Paul says he can not wait to come home.

Michael's Prom pictures and Samantha's semi-formal pictures have been posted on their web pages.

Paul had a great day today.  He is feeling good and after PT, Lucy and Paul made their first solo trip home for the weekend.  Michael is going to his first prom tonight, so Lucy wanted to be home to see him off.

I also had the opportunity to stop in at Warnsdorfer and personally thank Ms. Chibbaro's class for all the nice cards they have sent to Paul.  Ms. Chibbaro allowed me to sit with the class for a few minutes and answer questions they had about Paul's surgery.  They are a very warm and inquisitive class. I can see why Paul misses them so much. Thank you for letting me stop by today.

Paul had a very good day today.  He is still having pain in his ankles.  There are only 7 days of turning left on the chart, but due to the stiffness in Paul's ankles, they are going to alternate days of turning and not turning.  This puts his last day of lengthening at about two weeks from today.  Hopefully he can come home shortly after the lengthening is done!

Paul seems to finally have recovered since the procedure last Wednesday.  He had a good day today- Tuesday and spent most of the evening laughing with Liza and Jabez. 

Lucy reports that they did not get too much sleep last night-Monday, but perhaps they will get some sleep tonight.

Happy Memorial Day weekend to everyone.

Paul had a good day today.  He slept fairly well and was happy to do an activity today.  The NCAA Lacrosse finals are being held at the M&T Bank stadium where the Baltimore Ravens play.  Thanks to RMH and Under Armour, we were able to get tickets to the events today.  Paul enjoyed watching the games, however the sun was very hot, so he spent most of the time indoors in the air conditioning.  Uncle Paul and Nicholas stopped in for the day and gave me a ride back to NJ so I can get my truck.  I am leaving the van for Lucy so she can drive home on Friday right after PT. Samantha and Michael will stay overnight again tonight and I will pick them up tomorrow.

We also saw Jim Wendell, his sons Jimmy and Mat as well as his brother Dan at the game.  Jimmy also offered us tickets to todays event and Monday as well.  Thanks Jim!

Paul had a rough day on Friday. He was in much pain most of the day.  He could not have pool therapy due to the recent pin removal.  He had land therapy.  He was in some pain and they gave him some interesting athletic tape to support his knee and ankle.

Michael, Samantha and I arrive early on Saturday morning.  Paul was just going to breakfast.  He was in good spirits but a little moody.  We told him we were taking him to the National Zoo in Washington DC and he perked up right away.  He had a great time and managing his pain better than he did earlier in the week. 

Tomorrow we plan to attend the NCAA Lacrosse Finals at the M&T Bank center right here in Baltimore.  Uncle Paul and Nicholas are playing at a local soccer tournament, so we hope to meet up with them some time tomorrow.

Mom and Dad Cuzzola continue to work towards Sainthood.  They spent their day working on our garden in East Brunswick.

Paul skipped pool therapy.  Doctor says to wait 3 days before getting back in the pool.

Today the plan was to take the late shuttle and get over to Land therapy, however Lucy was talking to me on the phone and missed the shuttle!

Paul is taking pain meds every 4 hours since the procedure.  Hopefully he can slow that down tomorrow. 

Samantha, Michael and I plan to come down either late Friday night or early Saturday morning depending on the traffic.  I hope everyone has a nice Memorial day weekend!

Seven Weeks since surgery.

Paul had some screws removed today.  The procedure started about 9:00am this morning and lasted about an hour. Dr. Standard took the oportunity to bend Paul's legs while he was uder the anesthia to make sure he has the range of motion he should have at this point in his lengthening.

Paul was very apprehensive prior to the procedure.  He did not want them to put him to sleep.  This is understandable because the last time he was put to sleep he awoke with the fixators on his legs and it took several days before he could even move.  This time he was up and moving within several hours of the procedure.

Dr. Standard reported that everything went well and he is very happy with Paul's progress.  Paul was very sore today and complained about "burning" at the site where the screws were removed.  By dinner time he was feeling much better.

Two great days in a row.  Feeling good and having actually enjoying himself!

Paul had a great time tonight.  Some children from a local business came by and played games with all the kids.  Paul says it was the best activity day yet!

Paul is bending much better the last few days.  We skipped two days of turning on Friday and Sunday, it really seems to have paid off.  It gave his muscles and nerves a chance to relax.  We have avoided posting videos that show Paul in pain.  Today we posted a short one so everyone can see how really hard he has to work everyday.

Tomorrow morning at 8:00am Paul is getting  some of the pins removed. The pins are below the skin, so the change will not be visible. Lucy was able to get an earlier ride to the hospital. Kellie thank you for the offer to help. Also Mom and Dad Cuzzola are leaving NJ at 4:30am to meet them prior to the procedure! Keep them all in your prayers.

Huge day!  Paul measured in at 2 3/4 inches!  Nice!  Dr. Standard says everything is going beautifully.  Paul is doing great.

The ankle pins are put in place to keep the lower leg bones together during the lengthening process.  This keeps the bones growing at the same rate.  It often causes discomfort because the bones are meant to move independently.  Generally at about 3 inches of new length Dr. Standard removes the ankle pins and finishes the lengthening without them.  We were expecting to hear this at the next visit, but instead Dr. Standard has decided to remove the ankle pins Wednesday!  Wow!

According to Dr. Standard this is a relatively quick process.  Several years ago they removed the ankle pins without any anesthesia.  Now they prefer to spare the patient any anxiety so Paul will be "knocked-out" for about 20 minutes while they take the ankle pins out.  It takes longer to prepare the Operating room than it does to perform the procedure.

Lucy and Paul are planning to brave this alone.  It was a bit of a surprise so I am working in NJ this week.  I am sure they will be fine.  The biggest challenge has been making arrangements to get on the early shuttle to the hospital.  If they are not successful, then I will make the trip down tomorrow night, drive them to the hospital at 6:00 am and get back to NJ  for work.

Keep Paul in your prayers.

Paul had a nice day yesterday.  The weather was not great, but he enjoyed hanging out with his brother and playing video games.  He was able to open the package from the Doughertys.  What a great surprise, they really know Paul well!  The package was filled with all types of gag gifts like trick gum, trick can of nuts, a remote burp machine that does more than burp!!  We all had fun playing with the gags.  Thank you Doughertys!

We also found a card from Mrs. Basellini that was sent awhile ago.  Thank you for the wonderful card and gift.  There are so many cards and gifts, so I try to thank everyone on line, but it is always possible that I have not heard about every card and gift.  You know how it is, no one tells Dad anything.  So if I missed anyone  - Thank you for your thoughts and prayers.  A special thank you to Aunt Biddy who seems to send a card every day!

I also found some great videos that Lucy shot a few weeks ago.  There are a couple real funny ones that I am going to post.

Today we went to church in shifts.  Sam and I took the early Mass and Michael and Lucy were going to go to the 10:00 Mass while I stayed with Paul.  Paul was eager to go to church so I dropped them all off. They are praising God as I am writing this update.

We will all be bringing Paul back to Baltimore this afternoon.  Then Michael, Samantha and I will come back this evening so we are ready for school and work tomorrow morning.

Lastly - Congratulations Gabriella Cuzzola who is graduating from Quinnipiac University today!  We wish we could be there to share in your accomplishment.  We are thinking about you Gabby.

Lucy and I sat outside the Physical Therapy room for 1/2 hour listening to Paul screaming  while Sunni helped him do knee and ankle bends.  As a parent these are the most difficult moments.  The upside is that as soon as they are finished, Paul seems to be fine. 

We encourage Paul to stay  tough and remind him that things will get better.  For the most part, he hears us however there are times when he just gets very upset.

We left therapy in Baltimore, Maryland at 3pm and went straight to East Brunswick to see Samantha off on her "Semi Formal".  Lucy commented on my driving the entire way - but it was all I could do to get us home by 6:30pm.  We caught up with Samantha at her friend Haley's house and it was immediate tears for Samantha, Lucy and even Paul. Tonight more than ever, my little girl looked like an Angel.  Samantha does not cry often and she kept saying she didn't know why she was crying, but we all knew.  As a family we have been through so much over the past month.  Rushing home to share in a milestone was another reminder of how this journey keeps us from enjoying all the family moments we normally take for granted.

Tonight is Samantha's night.  She wisely chose to avoid the "After party" and instead went with her closest friends to see "Pirates of the Caribbean" late show.

God Bless everyone that continues to follow Paul's journey.  Make sure you hug and kiss your children tonight.  They grow up so fast.

Today was a pretty good day for Paul.  He threw-up one more time early this morning, but has since been okay.  He is not eating very much, in fact it takes much coaxing to get him to eat anything. 

He met with his tutor today and she says he is doing very well.  She can not believe how hard  the word problems are that his teachers in Warnsdorfer sent for him to complete.  I told her that the children in New Jersey are the smartest in the entire country.

After Physical Therapy we are heading back to New Jersey to see Samantha off to her semi-formal dance.  Samantha has been preparing all week and it is killing Lucy that she is not there to help.  I will post some pictures if we can get there in time.  Traffic will be difficult tomorrow around Baltimore because the Preakness is being run here this weekend.

We plan to go to church in NJ on Sunday morning and then head right back down to Baltimore.  Paul has a meeting with Dr. Standard early on Monday morning.

Today was a good day for Paul.  He was not in too much pain.

He woke up last night about 2:00 am and was doing well.  He just felt like talking for awhile.  Of course Lucy stayed awake with him for more than an hour just talking when he suddenly decided to throw-up.  After that he went back to sleep.

Today the NY Yankees are in town.  We walked down to Camden yards and purchased tickets for the game.  I am not sure who had more fun, Lucy or Paul.  We left in the 7th inning because Paul was starting to fuss.  When we got back the RMH, while we were waiting for the elevator he had to throw-up again.  Since there was nothing to catch it, Lucy thought fast and used the Orioles hat Paul was wearing.  It is just as well, Paul is really a Yankee fan anyway!

There is a stomach bug going around down here.  Most of the other children got it already.  Looks like it is Paul's turn.  Like he doesn't have enough to deal with already!

Sorry we have not posted many videos lately.  Lucy picked out a few that I am posting tonight. 

Paul got the coolest card today from Aunt Carol and Uncle Joe.  It is in the shape of a box and is covered with jokes.  He really had a good time reading it.  Most of the jokes are much funnier than the ones Mark Finklestein has been posting on this site : )

Thank you again to everyone for the great support.

Lucy reports that Paul was up once an hour last night.  I saw them today between Physical Therapy and tutoring and he was in great spirits, right up until Lucy mentioned he had tutoring today.

Lucy also reported that we have been incorrectly positioning Paul in bed at night.  For his comfort we have been propping his knees up with rolled-up towels just like they showed us to do in the hospital directly after the surgery.  The Physical Therapist told Lucy that this is wrong and that he needs to sleep with his legs straight.  This will make Paul even more uncomfortable, but we can't imagine him getting an less sleep than he does now.

There is a young man here named Tyrone.  He has leukemia and is an extremely nice guy.  His sister is also here because she donated some of her bone marrow to him this week. What a brave young lady.  She is sore from the procedure, but is expected to feel better soon.  This is a very nice family.  Please keep them in your prayers.

Forty Days since surgery.  Paul had a good day in therapy but is having some sharp pain in his left leg.  Rubbing his foot seems to help keep his mind of the constant pain.

He is in good spirits most of the day.  All the other families in the RMH are always happy to see him and he enjoys spending time with some of his new friends.  Bionicals with Jabez has become a daily event.  Jabez is a young boy also having a bone correction in only one leg.

One of Paul's new exercises is called "Dangle".  This is when he sits on the edge of a chair or the bed and lets his legs hang free.  Sometime when we look at his legs we can't believe how much longer they have gotten in such a short period of time.

(Lucy writing for Mike tonight)  Mike arrived Friday night and we were counting the minutes until he arrived.  We were so happy to see him.  Last night was a rough night with a lot of muscle spasms.  We treated with a muscle relaxer and a lot of heating pads --and of course you know it --Foot rubs!  ALL night.  Sunday we were heading out rain or shine. Paul and I have been couped up for what seems like forever.  We go from the hospital to the RMH everyday.  We do not venture out on our own.  Today we went to St. Jude's Church and then headed for the Harbor.  We went to the Science Center which Paul enjoyed immensely.  He was able to do most of the hands on exhibits.  We plan on going back soon!

* We are sorry we missed Carmine's communion and Ally's confirmation this weekend.  Congratulations to you both. We love you.

Back to the foot rubs!

Love to all!

Paul had a good day today.  No pin cleaning!  Weather is rainy in Baltimore today, so we stayed in and enjoyed just sitting around together.  As part of his weekend therapy, we helped him to stand for several minutes.

Paul took his time reading all the letters from Mrs. Sarapochillo's class. [And some cool books] You kids are so creative!  We all enjoyed reading every card.  Thank you for thinking of Paul.

Paul also enjoyed the books from the Lonskis.  The Wimpy Kid "Do it yourself" book kept him occupied for several hours. Thank you for your generosity and for not asking us to endure Jeanine's cooking : )  Lucy and I agree that Jeanine Lonksi is the funniest lady we know.

Paul had a great time digging through the huge box of snacks from the Angiola family.  To be honest, so did Lucy and I.

Last but not least - Mom sent some of her homemade cookies - Lucy and I enjoyed the sweet taste of home.

Much better day today.  Only one pin site is "untouchable".  Dr. Still advised to move forward with the stronger anti-biotic.

Paul is looking forward to a relaxing weekend.

Still having trouble with pin care.  Lucy and I decided to request a stronger anti-biotic.  She saw Dr. Standard and he agreed right away. He will start the new anti-biotic tomorrow.

After pin care Paul is himself.  He is himself in land therapy too.  When they get back to the RHM he is having fun with Liza and Jabez and the other children.

Nurse Danielle has been an exceptional supporter for Lucy.  

Louis stopped by today with more letters from Warnsdorfer!!! Those kids are the best!  Louis also brought a gift from the Lonski and a special box he had decorated with "Kindom Hearts".  It looks really cool.

I say the Dougherty family today and they send their prayers and support.

The Gencos sent another gift for Paul which he loves!  Thanks again Genco family!

I will be working in Baltimore again next week.  I will travel down Friday Night or early Saturday morning depending on traffic.  My wonderful in-laws are going to take care of Michael and Samantha.  I don't know what they do when I am not here, but they all seem eager for me to leave.

Paul continues to have pain in the side of his left leg.  There is no sign of infection and the pin sites look fine, but the skin stretching around the pin is probably the cause of the pain.

Lucy's good friend Lisa and her family came down to Baltimore to visit today.  This was a surprise visit and Lucy was so happy to see them.  Lisa is such a good friend and her visit meant alot to Lucy.

Back in New Jersey, the wonderful Gencos had a BBQ and invited us for dinner.  The Gencos are so great.  We are lucky to have such nice friends.

Paul had a tough day.  He is getting pain at two pin sites. Lucy reports that he refused to do therapy in the pool.  They took him out after 20 minutes.

Lucy had the doctor examine the pin sites, and everything looks as expected.  As the lengthening goes forward, the skin is getting pulled a the pin sites.  This is most likely the cause of Paul's pain, and it is not likely to get better until after the lengthening process is finished.

We posted the X-rays from Thursday's visit.

We drove Paul back to Baltimore early this morning.  He enjoys the ride in Lucy's van because he can watch a movie.  Kung Fu Panda ended just as we arrived.  I dropped Lucy and Paul off and headed right back to New Jersey to make an appointment. He took the separation much better this time.

Lucy had Paul's strut changed so he is back in business.  He had a good day of therapy and when he arrived back at the Ronald McDonald house he was reminded that he is still the undisputed "King of mail".  The super nice ladies at RMH joked that his mail takes up half the mail room.

Many thanks today going out to Paul and Kellie, the Genco Family, and Angela Michaels.  Paul loved getting the mail.  We also got a package back home in New Jersey from Frank and Carol and the Angiola family who went totally over-board with a box of treats and "Gas Money".  I had to fight Samantha and Michael off with a stick to keep them out of the box.  I will try to get some video of Paul opening the box when I deliver it to him this weekend.

We also heard from the RMH that the Karpinskis and Mrs. Ruggiero along with all the Warnsdorfer staff have made donations to help cover Paul's room costs.

Lucy and I are so moved by the amount of love and care everyone has shown us.  In the middle of this tempest, our family and friends have shown up in numbers to see us through.  We are forever grateful.

A special note from Paul to all those great kids at Warnsdorfer Elementary School:  "Good Luck on the NJ ASK!"

Happy Mother's day to all the Moms!

Paul had a very rough night last night.  He was awake most of the night and Lucy spent hours rubbing his feet.  What a great Mom.  Michael and I were awake for much of the night as well so when we all finally got to sleep, we slept right through church.

Paul enjoyed Sunday brunch and hanging out in the yard while we planted some garden vegetables.  Lucy really enjoyed being home this weekend and says she is recharged and ready to get back to Baltimore.

Hard to express how great it feels to have Paul at home, even if only for the weekend.  His best buddy Louis came over today and they had a great time.  Louis you are a great guy!  Paul misses you everyday.

Aunt Maria, Joey and Megan also came to visit. So great to see all their smiling faces.

Paul continues to have periods of time when he is depressed and won't allow us to console him.  We showed him a ruler today and reminded him how much progress he has made.  It had a very positive impact. Paul has a very good understanding of the lengthening process, but at age nine, he stuggles with time factor.  Six months seems like an eternity when you are young - even longer when bound in a wheelchair. 

One of Paul's struts stopped turning today.  It will have to be switched out on Monday.  When a strut gets to the end, they are switched out for new longer ones. 

We also have Paul's latest xrays which look great and will be scanned in and posted to the site in the near future.

Thank you again for all the wonderful thoughts and prayers.

Paul did well in therapy.  Still has some sore pin sites even after the anit-biotic has been started.  We are hopeful for some improvement tomorrow. 

Big news today: Paul and Lucy have come home for the weekend!  We were able to get Paul into the house using the ramp we built. [Will upload video tomorrow] He is so happy to be home.  Our dog Marino was so happy to see Paul that he went crazy running around and barking.

As soon as Paul got home, he asked to see the letters from everyone at Warnsdorfer.  He had a great time reading each letter and telling us about the person who wrote it.

Today Paul had his second post-surgery Doctor's appointment.  He met with Dr. Standard who told him everything looks great.  He has already gained 2.9 centimeter in the top portion of his legs and 2.7 centimeters in the bottom portion of his legs for a total of 5.6 centimeters or about 2 and 1/4 inches.  This is incredible.

Lucy discussed the foot pain and Dr. Standard said the foot pain is from the nerves stretching.  Dr. Standard suggested that they skip a day of "pin turning" twice this weekend to give the nerves a chance to catch up and maybe give Paul less pain.

There is also a pin site that is extra sensitive, so Paul will be placed back on the anti-biotic.  This is a good idea because it helped last time and Paul tolerated it very well. - Day 29 and we are more than half way to four inches!  Keep growing Paul!

Unbelievable!  Paulie walked across the Physical Therapy room today. Check out the video.

Paul had  a session with his tutor today.  Lucy reports it went well.

Paul has been complaining about pain in one knee and both feet.  He is no longer taking the anti-biotic.  The prescription was for ten days which was over a few day ago.  We are hopeful that the pain today is not related to an infection. 

Rumor has it that someone may have "dropped a duece" in the pool yesterday.  They take precautions when this happens, but we worry that this could lead to an infection for Paul. 

One of Paul's pins just stopped turning today.  Lucy took him upstairs to see the doctor's assistant.  They corrected the issue and said all Paul's pin sites look good, so we will not restart the anti-biotic at this time.

Back in New Jersey we are building a couple ramps to allow Paul to get his wheelchair into the house. Samantha always brings some art to everything she does. I am sure Paul will love the decoration.

Paul had  a good day in therapy. Looks like he actually went underwater in pool therapy.  He has found a new friend in Liza who is going through the same lengthening process as Paul.  According to Lucy they are getting along very well.  Liza enjoys the same video games as Paul.

Paul continues to to complain about ankle pain, but only when he is not distracted by his daily activities.

I am now writing the diary remotely from our home in NJ.  I have the pleasure of speaking with Paul and Lucy several times a day.  Paul did really well in therapy today.

Great news for Hanna.  [She is the young lady in the room next to Paul and Lucy.  She is having her arms lengthened.]  Dr. Standard gave her the okay to go home and continue her lengthening and PT from home!  According to Hanna - the arms are  much easier to lengthen.  She would know because she has had two leg lengthenings already.  I know she can't wait to get back to Nebraska, but Hanna and her mother Dona will be missed.  Paul took the news hard at first. In my absence, Dona has been helping Lucy move Paul in and out of his wheel chair.  However, we did practice doing this with just one person, and today Lucy was able to put Paul from the wheelchair to the bed alone!  

The process is a little longer and Paul has to work harder, but it is good because it forces him to keep building his arm muscles.

Paul had his first tutoring session today.  He says he likes his tutor.

Donna LaRocca stopped by the house today and dropped off a large envelope full of cards for Paul.  I told him about it and he can't wait to open them.  I will bring the package down to Baltimore this weekend.  Thank you to everyone for the kind emails and cards.  They help to keep Paul's spirits up.  He really misses all his friends at school and keeps saying that he can't wait to go back to Warnsdorfer and see everyone.

This morning Paul woke up crying.  Not because he was in pain, but because he was so sad that Michael, Samantha and I were going home. Although we kept trying to distract him, he continued to get upset thoughout the day.  At one point he got himself so worked up that he actually began throwing up.  I am a big part of his safety net, and he was not willing to part with that security. 

We took Paul to a local church this morning.  He complained that he did not want to go, but I could see that the routine of the Mass reminded him of Sunday at home and gave him some peace.

There was no way to leave without him getting upset, so around 7pm we left and tried not to drag out the goodbyes too long.  His face haunted me all the way home.

Once we got home we were able to video conference with him and he was much happier.  Lucy and Paul were settled in and ready to go to sleep and he was his funny self making faces into the video. 

Paul has a long road ahead of him.  I am confident that Paul and Lucy can get along without me there on a daily basis.

Paul had a good day today.  He awoke happy, but before lunch he had about an hour of deep depression.  He misses being home and misses his friends. He misses being able to run free. 

Grandma. Grandpa, Michael and Samantha came down today.  Paul's spirits were lifted by the company. He asked us to put him in the swing outside and enjoyed a nice ride.  Paul also got a banner from the family in florida.  Everyone signed the banner with a nice note to Paul.  He had a great time reading it.

He is handling the pain as well as we can expect, but each time we turn the pins, he is having muscle spasms which are lasting for several minute.  He feels frustrated and basically tortured by the lengthing process. He also asked me why I can't quit my job  stay here with him.  Tomorrow will be rough when I return to NJ with Michael and Samantha.

Great Day.  Very little complaining.  Last day of the 10 day antibiotic.  We are hopeful that no infections return.  We feel we are more prepared to identify an infection than we were before, which is not saying much. 

Lucy and I are still amazed how much we are expected to know and do through this process.  We had years to prepare, but we were not ready for all the tasks that we need to perform on a daily basis.  Perhaps this diary might help other parents in the future. We are so thankful for the other parents that are on their second and third surgery.  Dona Housh continues to be a constant source of information, support and an unbelievable friend.  How lucky is Paul to be roomed next to Dona and Hanna who are on their third surgery and they are so willing to share their knowledge and time to help us. 

I have been here for one month and I am going back to NJ on Sunday.  Paul cried just at the mention of me not being here every day, but I am now confident that he and Lucy will be able to continue making postitive progress without my daily presence in Baltimore.  I will make sure we can video conference and see each other when he needs me.  I know it will be difficult to leave on Sunday, but Lucy is ready.  I will continue to return on the weekends.

On Friday's we pay our weekly bill to stay at the Ronald McDonald house.  They usually slip a note under the door the night before it is due.  We did not get a reminder this week.  It seems someone has paid the rent for an undisclosed amount of time.  We tried to get the details but need to wait to speak to the account representative next week.   I have a strong suspicion that the Karpinskis have much to do with this.  Thank you does not say enough to express our gratitude for everyone's thoughts, prayers and generosity at this time. Ken and Deb are special people and we are blessed to call them friends.

I asked Paul what he wanted to say to everyone.  He said "Tell them I miss them, and tell my friends that I am coming back to Warnsdorfer in September not October liked I told everyone."

Last night Paul had a rough time.

Great day today.  Paul stood for the first time in Land Therapy.  He wanted to walk right away, but Sunni , his therapist said he has to wait.  Walking too soon could cause issues with his lengthening.  It was great to see how eager he is to get back on his feet.  I know he will keep his positive attitude all the way through.

Wonderful Warnsdorfer sent another great card today.  All the staff sent a card telling Paul that they believe in him.  He was tickled when he read it.  Thank you.

A special note to Mrs Chibaro and Mrs Basselini - If you look though today's images, you will see Paul reading a school book!  Lately this has been like spotting a rare Pokemon, not many people get to see it!  But Paul has agreed to study harder now that he is feeling better.

Holy Saturday.  Paul had a good day today.  No therapy or pin care.  He is still getting bad pain in his one ankle that causes him constant discomfort.  We have been able to adjust the way we move him to keep from hurting him further.

Paul told us today that he no longer believes in the Easter Bunny or Santa Claus. I am pretty sure I saw Grandma tearing up over this news. He said he saw a commercial where the parents were hiding the eggs.  He accused us of lying to him.  I told him that I believed in the Santa Claus and the Easter Bunny, but if he did not want to put a basket out tonight it was ok.  When he thought there was a chance the Easter Bunny might pass him over for not putting out a basket, he emphatically said he wanted to put his basket out tonight.

Paul is on two pain meds.  One is used several times each day, the other, diazapram - aka Valium, is used as needed for muscle spasm. The problem with this drug is that it is often used to treat anxiety but can also create anxiety in some children.  We felt it might be causing anxiety for Paul as he often gets himself worked up over the idea of pain more than the actual pain. He has also been very moody and even mean at times.  For the last couple weeks we just accepted this behavior as part of the recovery, but after speaking with some other parents and paying attention to his behavior, we realized we might be able to help him with a different prescription.

Today we switched him to Baclofen and it seems to have worked really well.  It addressed his pain and kept him in good spirits.  We will see how it goes moving forward.

We finally had a small stretch of good weather this afternoon and took Paul outside for an hour.  He objected to leaving the comfort of his room at first, but was clearly happy to be outside once he started tallking with everyone.

We also colored some Easter eggs this evening and a volunteer group came in and did a very nice dance recital for the children.  At the end all the children got some Easter treats.

Another fairly good day.  Paul did well in Pool and Land therapy.  Not as much complaining today, the pin sites are even less sensitive than yesterday.  By tomorrow the antibiotics should reach maximum effect, so we are hopeful that the pin sites will continue to improve.

Now Paul is working harder in therapy again.  He is walking in the pool and even getting into a sitting position on his own.  It is very important to keep moving all his leg joints as much as possible as the lengthing moves forward.  While the bone regenerates and actually grows, the muscles, nerves and tissues are being stretched.  Without constant therapy, Paul's legs could start to freeze up.  The stretching also causes muscle spasms which have been manageable so far, but may continue to increase and intensify as the lengthing process continues.

Grandma and Grandpa brought Samantha down for the weekend.  It took them 5 hours due to the increased holiday traffic! 

We got a great surprise when Coach Mike Duhig and his son Mike Jr. showed up for a visit.  They gave Paul Lego Star Wars for his 3DES which really got a huge smile.  Paul kept playing the new game until we had to make him turn it off.  Thank you Duhig family.  Good luck to Mike Jr. who is participating in a martial arts tournament tomorrow.

Lisa Viera sent a NYFD t-shirt for Paul today - Nice! 

Thanks to everyone for your continued support and prayers.  We hope everyone has a Blessed Easter Weekend.

Back to  Physical Therapy today.  Paul had a rough time today.  He is still complaining about his right ankle, but today the pain was causing a lot of discomfort.  The Physical Therapist Sunni felt the doctor should take a look at it because Paul has been so good in therapy and never complains.  She knew that if Paul said it hurt, it hurt.  She called the Physician's Assistant and he came to take a look.  He said the nerve seems fine and the pain is most likely from the screw in his ankle.  Paul will just have to press on through it. 

He was uplifted from a visit from dear friends, the Genco family and LuLu.  It really cheered him up and he forgot any pain he was in. 

We pushed the "no pain meds" envelope a little too far.  Paul did well all day yesterday and even went to sleep without any pain medication.  About midnight he awoke in pain and suffered for about an hour until the oral medication began to work.  We will try to manage this better going forward.

We walked to a local church for Palm Sunday.  It turned out to be a a historical landmark with a historic graveyard. We saw the grave of Edgar Allen Poe and his family.

We finally took Paul to the Maryland Zoo.  He had a good time.  He really liked feeding the giraffe. Towards the end of the visit he started getting tired and began getting very upset that he could not run around the zoo on his own.  He wished we could forget this whole thing and just go home.  After a short nap he was back to himself.

Today started out rough.  Paul woke up with some pain and was dreading physical therapy.  He got himself very upset before we even began pin care, which made things worse.  Ultimately he got through it.  The pool therapist suggested that he might have an infected pin site.  Both of his thighs are still swollen and tender.  It was suggested that we start anti-biotics to quickly thwart any possible infection.

Fortunately we were able to get an unscheduled visit with doctor Herzenberg who felt all the pin sites were fine.  They did take a culture of one site, so we will hear on Monday if an infection in present, but for now we will not start using an antibiotic.  Nurse Audra was very helpful and she explained the importance of avoiding antibiotics until they are necessary. 

We took Paul for a short walk by the inner harbor for a change of scenery today.  He started out grumpy but ultimately had a good time.

Land and Sea therapy again. Lucy did pin cleaning alone and reports it went well. Paul takes a shower after pool time so she is cleaning the pins directly after the shower which makes it a little easier. Paul's thighs are still very swollen so he continues to complain during pin care. So far no infections. We continue to monitor his temperature which has been slightly elevated since surgery. We have been told "This is nothing to worry about".

We continue to meet many interesting people with some very amazing stories. There is a young lady here named Kate. Thanks to Dr. Paley she was able to avoid a leg amputation when she was two years old. They have continued to lengthen her one leg as she grows to keep both legs equal. In her short life she has had 40 surgeries and she is now just a centimeter and a half away from having equal length in both legs. As a teenage girl she is excited about the prospect of wearing two normal matching shoes. 

One week post surgery.  Today's biggest milestone is Paul finally went #2 - enough said.

Thank you for all the well wishes.  Paul looks forward to reading them everyday.  We got a call from home yesterday.  A package arrived for Paul from some of his teachers. He can't wait to see what it is.... His brother and sister will bring it down this weekend.

The Fixators were turned again today doubling the new length at 2 millimeters!

Pool therapy started today.  I was able to drop in between appointments and see Paul in the pool.  Lucy took most of the videos today and she did a great job.  You can get a good view of the fixators on his legs.  It was great to see him swimming and walking.

The question came from a family member about whether the top of the legs or the bottom of the legs are getting lenghtened.  It is actually both top and bottom.  The surgery created 6 breaks which are now held in place by 18 pins and two wires. It is like we put him in front a of train and now we are putting the pieces back together, only we are not going to let it heal completely.  Instead we will keep separating the bones at a millimeter each day and the bone will continue to regenerate in the gap at that rate.

The most amazing thing is the amount of courage our little boy has shown.  He really only cries during pin care and that is less each day.  He is turning the top fixators on his own and seems to be adjusting very quickly to the entire process.

Land Physically therapy is directly after Pool therapy.  Today they asked Lucy to go have a cup of coffee.  She reluctantly went and arrived back early.  She was able to visit with Hannah, who is a 12 year old girl going through arm lengthing.  Hannah has had two leg lenthenings and is as tall as Lucy.  Her mother Dona has been Lucy's mentor through this entire process and continues to be a daily blessing as they are now staying in the room next to Paul and Lucy.  Dona makes herself available whenever I am not around. Thank you Dona!!

Paul endured an hour and a half of motion and bending without a single complaint!  The therapist are gifted with an enormous amount of patience and compassion.

Today Paul had his first official "Land Therapy".  I am back to work so I missed it, but he said it went well.  Only the knee bends hurt really bad.  Lucy and Paul took the shuttle from RMH [Ronald McDonald House] to the Hospital and back.  The lift got stuck and Paul was upset I was not there to fix it.

Tomorrow is Pool therapy.  Paul is looking forward to it.  He will catch the early shuttle because there are some preparations he needs to learn.

The most exciting news today is that we turned the fixators three times today and Paul's legs are now 1 millimeter longer!  Tomorrow will be another millimeter so the lengthing is under way!

We hit several milestones today and it was a very good day overall.  Paul's pin care went very smoothly due to a few different factors.  His swelling is down, his pins are staying clean, he was well medicated, and Lucy, Michael and I were able to complete the cleaning in about 15 minutes. All the doctors and nurses say the pin cleaning gets easier every day, and it has gotten a little easier.

Michael has been a great help.  Paul counts the minutes until he returns.  Sammy has also been a great support.

Paul was switched over to oral medication last night which seems to agree with him so far.  We were able to remove all the lines connected to him and he was happy to take control of his wheelchair for a ride down the hallway.

After 5 days we finally left the hospital today.  Lucy never left Paul's side except to take a couple showers - boy did she need a shower  : )  After some fussing, we were able to get Paul into the car and over the Ronald McDonald house. 

Most of the day, Paul is comfortable and happy.  He keeps asking to go to the Zoo which we promised him will happen as early and often as he wants to go.  Each day should get easier for him.  We are now watching for the inevitable pin site infections.  The doctors made sure we have the proper anti-biotics so we can administer the medication if needed.

Paul is reading all the notes, letters and emails everyone is sending.  He smiles for all of them, and we hope to get him writing back very soon.  I mentioned homework yesterday and all I got back from him was a unapproving glare.

"Pin Care" is a nasty phrase. Cleaning the pin sites has proved to be the most difficult part of the lengthening. Hearing Paul screaming "Please stop!!" over and over is almost more than Lucy and I can take, but we know the importance of avoiding an infection. Mike, Sam, Grandma and Grampa are coming today. This will help Paul's spirits. He is generally pretty good most of the day. We should be leaving the hospital tomorrow.

When Paul came out of surgery, the first thing he said was "Dad you lied,  you said it was going to hurt real bad"   Then he asked us to look under the covers and make sure the bars were there because he did not feel anything.

Last night, Paul had a rough time mostly due to the constant activity in the hospital.  The pain management is working most of the time, but there are times when he is in some pain.  Post surgical muscle spasm are common in limb lengthening. 

Today he started Physical Therapy - sort of...  We got him into a wheelchair and took him to the game room where he played video games with his brother while Samantha used the arts and crafts to make him a new bracelet.  Grandma and Grandpa were also there for support.  I posted some video of this because it was the happiest Paul has been since the surgery.  We also learned some leg exercises that Paul will begin doing everyday.

He has had a few moments when he asks to just forget the whole thing and go home, so we remind him that the situation is temporary but the benifits will be permanent.

Lucy has been a rock through the entire process refusing to leave his side for even a short period of time.

After 5 hours of surgery, Paul is finished.  Dr. Standard reported that everything went well.  We are waiting to see him.  Thank you for all the prayers and messages.  More tomorrow.....

May God Bless Paul as he undergoes his first surgery tomorrow morning.  We are arriving at the hospital at 7:00am.  We will update everyone when we have the opportunity.  Thank you again for your prayers and support.

We arrived at Sinai Hospital at 9:00am this morning for Paul's pre-operative visit.  We were prepared to spend most of the day, however we were not able to meet with Dr. Standard because he had an emergency surgery.  Our visit was spent reviewing all the procedures, getting Xrays and signing forms.  We were surprised to be finished by 11:00am.  We decided to walk to a nearby market for lunch and we discovered Faidley seafood.  Lucy recognized it from one of the many food shows she watches, and even recognized the owner who was happy to be acknowledged. We had some very good crabcakes for lunch and Paul also had some shrimp.  Around noon we got a call from the Ronald Mc Donald house.  "Would Paul like to see the Baltimore Orioles today?"  What a surprise!  The entire city is a buzz because it is opening day and all the seats are sold out.  The weather was perfect and Paul enjoyed a terrific day. 

Nothing is planned for Tuesday except to let Paul run like a wild man all day.  Michael,Sam, and Grandma and Grandpa Cuzzola will be arriving in the evening.  Wednesday is the big day.

Today we went to Church, had breakfast at IHOP and finished packing for the trip.  We will check in at the Ronald McDonald House in Baltimore this afternoon.  Ready-or-Not.....Here we go!

We arrived at the Ronald Mc Donald house in Baltimore this afternoon.  We are all excited and nervous at the same time.  Everyone here has been very welcoming and we have already made a few friends.  Paul seems comfortable.  We are looking forward to seeing the doctor tomorrow during Paul's pre-operative visit.