Wednesday, July 1, 2009

6/29 Appt Update and Pics

Thanks to my BFF Allison for updating the blog for me on Monday. Our appointment was at noon and we didn't get into a room until around 2pm...then it was about 3:30 before we saw Dr. Standard and were out of there. By the time we stopped to eat LUNCH (yes, lunch....) we were slap in the middle of rush hour traffic in Baltimore and DC. Fun times, fun times! Not to mention the fact that Hunter and I both have had a cold/sinus/chest congestion mess..we both went to the doctor yesterday.

Dr. Standard was pleased with the increase in Dalton's ROM from our last visit...not happy with the xrays...he said that if he saw those xrays he would have real concerns but when you can see the patient and see exactly how much ROM they have then that helps complete the picture. Dalton had a pretty big jump in ROM between May 11th when we started PT and 5/29 when he had his next evaluation by the physical therapist...however, his ROM was measured again the end of last week and it had only gone up very slightly. It's still an improvment, just very slow. Dr. Standard said that sometimes you will see a big jump at first and then it slacks off or starts to go the other way again. He said he feels like this next stretch of PT before we see him again will tell the tale as to if we need surgical intervention or not. He asked how the medicines were working for Dalton. I told him the V A L I U M did not work at all and he said that if that medicine didn't work then most likely what Dalton was having pain from was inflammation and not spasms. He went 6 days w/no leg pain at night at all and then last night he started up again w/the pain. From a dead sleep screaming out "owwww owwwww". Poor baby. :( Dr. Standard also has written us an rx for a pediatric abduction pillow to wear at night. He said that at this point to help keep him a little more limber he would want to brace him at night but instead of bracing he wants to try this pillow. It doesn't look to me like it will be a big deal..I mean, afterall it is a pillow so it won't be hard like braces..but I imagine it will be hot and make it difficult to turn over and get comfortable so I am sure we'll have some fun nights once this thing arrives. Right now I'm having trouble even getting one. I've gone to two medical supply places in Seneca and they didn't even know what it was. One of the places was going to call and do some checking. I know I can order one for about $50 online but thought since I had the rx that I might could get it for less via our insurance. So basically our instructions are to do PT 3xs a week plus our exercises at home 3xs a day until our next appt which is 8/17, one week after Dalton turns 5! He also reminded Dalton about the "no jumping"...he also said no running hard..that was essentially as bad as jumping. He told Dalton that if Dalton promised him he wouldn't jump until his leg got all better that he promised Dalton that one day he would be able to run and jump all the wanted. Dalton's eyes got really's so hard having that stupid trampoline but not letting him on it. I will let him get on it and walk around it..he does pretty good. He understands that he's not supposed to jump at all..every once in a while he'll forget and he will jump off the couch or something like that...but it's not too's almost like we've reminded him for so long that he's finally accepted it as a part of life. It's harder when he plays with other kids because he wants to keep up with them...but it's not like we can not allow him to see we just have to remind him then to slow down some.

Here's a pic of Dalton with the super amazing Dr. Standard.

Here's his latest xrays...lovely no? lol

These pics aren't very good because I took them from the car and it was getting dark outside...but one pic is of the Hackerman Patz house that we stay in when we go up. The other picture is part of the house and to the left you can see that brick building..that's the hospital. So we literally are right at the hospital. Very convenient! The HP house is great. The staff is so nice...the boys love it there! They have a play room, tons of movies you can take to your room to watch, all kinds of game systems, several computers for the kids to play games and go online's truly a home away from home kind of set up.

We went into Washington on Sunday to see the sights. My mom has been and I had been. Joey and I took Hunter when he was about 2 so he, of course, doesn't remember anything. My dad had never been and he really enjoyed it. Here are a few pics.
lol...they were cracking me up with the saluting...almost every single picture I have of Hunter he has his hand on his head saluting so when I stopped to get their pic on our walk to the White House Dalton tried to salute too...haha


  1. My name is Tanya, and my son Zachary, 10 years old, was diagnosed with Legg-Calve Perthes Disease in August 2008. He's had two surgeries, and his latest x-rays (7/6/09) showed more degeneration in his hip. His orthopaedist told us that there is nothing more we can do at this point. I would appreciate if you would share the names of Dalton's doctors... I'm at a dead end, and my baby boy is losing hope. As a parent, I can't just sit idly while my son is suffering. Thank you so much for sharing Dalton's story with the world and giving families like ours hope!!!

    Best wishes,
    Tanya and Zachary

  2. Hi Tanya..since you didn't leave an email address I can only hope that you will be able to see this follow up comment! I'm so sorry about your son Zachary. We see Dr. Shawn Standard at the Rubin Institute for Advanced Orthopedics in Baltimore, Maryland. I can give you more info. Email me directly at