Thursday, July 30, 2009

ROM Numbers

Here are the measurements from PT on Monday.

flex 110
6/24 110
(says this range is normal. yay!)

abduction 35
6/24 was 48 :(

internal rotation 30
6/24 was 27

external rotation 60
6/24 was 68 :(

Tuesday, July 28, 2009

Pediatric Abduction Pillow



I've got three words to say about this thing...

IT SUCKS EGGS!

Seriously. Dalton hates it and he tosses and turns and whines and cries every night. He tries hard not to but right now he's asleep and keeps trying to turn over and is whining because he can't move around good. (Oh, and this picture was taken the day that his abduction pillow came in the mail so I just got him to lay down and try it on. For the record, he doesn't sleep in the kitchen floor. LOL)

At PT today Dalton's ROM is down a little in two areas...one of which (abduction) is the one that goes hand in hand with his hip easing back into socket. It's hard not to be concerned but this isn't the time to freak out about it, I know...but it's hard, just the same..we've not had a time yet that his ROM has gone down..it's always increased. Dr. Standard said to call if his ROM went the opposite direction but at this point we couldn't get up there any earlier than we are now due to vacation schedules, etc so we are just going to ride it out and see what Aug 17th will bring. It is what it is I suppose and it will be what it will be when Dr. S. checks him next. Just please pray that his ROM is increasing!

Tuesday, July 21, 2009

Kindergartener




Dalton started kindergarten yesterday! He was SOOOO excited about starting. We homeschool and I am so thankful, especially now, given the situation with his hip. I don't have to worry about getting special requests and things put in for school..we can just roll with things at home and I can take him to PT when it's convenient. We have homeschooled for 3 years, starting with Hunter in 4-K and now Hunter has just started 2nd grade.

He's hanging in there...still having some night time issues. I did find him a small pediatric abduction pillow..it should be here on Thursday. Fun times ahead, I'm sure!

Wednesday, July 15, 2009

I'm still here...sorry for the lack of updates...nothing really different is going on. Same old, same old. The days are ok mostly unless he is too active and then he tends to limp and be very stiff. The nights are still rotten for the most part. We have maybe 2 or 3 nights a week of sleeping all night w/out any pain. I can't seem to tie the night time pain to being overly active because it happens on a day that he's not done much at all as well. I am beginning to think it's just "one of those things" with perthes that sometimes pain is unavoidable, unfortunately. My sweet boy has a birthday coming up. He'll be turning 5! We are going on vacation the first week of August with my BFF and her family so we have quite a good bit coming up to look forward to. Here's a picture of Dalton and his cousin Sara Jane (my sister's little girl). This was taken on July 4th.


We are still waiting on the pediatric abduction pillow...having massive trouble finding it and now it's been 2 weeks since our appointment with Dr. Standard and I'm about to freak bc we haven't started using the pillow yet. No place seems to have a pediatric size. Dr. S is doing a chat with his perthes followers (lol...I say that because we joke on our perthes board that we are his groupies..haha) on Thursday so I can ask him what he advises.

Otherwise, our days are made up of playing in the pool, PT appointments, lots of reading and art activities, etc. I think most of you readers know that we homeschool. We are starting back next Monday and Dalton will "officially" be a kindergartener!! Wooha!! I just don't know what happened to my little curly haired baby!

A lady on our perthes board posted just recently that Dr. Standard has now released her son to run and jump and be a little boy again. He had the external fixator on in December and wore it for 4 months and then followed it up with bracing. Dr. S said his hip looks great now. I long for the day that I can make a post like that. I sat and read her post and cried like a baby...so happy for them, yet my mind filled with so many questions about when our time will come. I know we've only known about perthes since December 27, 2008..not quite 7 months out yet. I can't help but wonder if we had started some PT from the get-go if we would be further towards our goal of healing by now. I guess we can't question..we can just move forward and deal with whatever is thrown our way now. I just thank God for Dr. Standard and what he means to us and to so many countless others. He's truly an angel that's been sent our way!

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 big...it'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 bad..it'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 anyone..so 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 on..it'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