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!

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

Dr Appt Update - by Allison

This is Allison updating for Lori.

Happy with his change in ROM. Xrays don't look any better. Said he'd be concerned by the xrays if he wasn't seeing the patient. Being able to see Dalton and seeing that he does have ROM in his leg makes him feel better about the situation. As long as we can keep ROM up we can keep him out of operating room. Can do bracing on a pediatric abduction pillow...to help his ROM. He will wear that at night until see him again. Increased physical therapy to 3 times per week. Noticed a little bit of density in hip -- said it could be blood flow starting to come back to the hip. Will be able to see better at next appt. Will see him again on 8/17.

Sorry it's so broken up...tried typing it as she was telling it to me.

Baltimore Bound

We are leaving in the morning at 4:30am...RAH!! lol Joey is setting my alarm for 4am...I'm just washing my face and getting dressed...nothing more, nothing less. haha I've got my ribbon and all other bow making supplies packed in the car so that I can whip out some hairbows on the way there and back. I'm nowhere near as nervous this time as I was the last time we were leaving to head to see Dr. Standard. I was so in a tizzy last time that I fought a rotten sick headache for the first couple hours of the car trip. This time will be more relaxing because we will have one full day there, which we are going to spend in DC. Last time we drove up one day, had the appt the next a.m. and drove right back. Whew! That was lots of car time.

As for Dalton, he's done better this week as far as his pain level at night but it's so hard to know if it's just one of those times that he's not having as much pain or if it's the L O R I T A B or some of both. Either way, we'll take it!

I got our clothes packed yesterday and Joey was off today so we took the boys to the river. They had such a good time. It was so hot today that the water felt nice. Where we go to the river we have to walk about 1/4 mile in. It's all downhill going in and Dalton walked about half way before he needed Joey to carry him. Of course, going out it's all UP hill. Dalton made it up the first little hill from the river and he couldn't go anymore. His leg was so sore. We got to the car and he didn't want to walk anymore he said. :( Poor babe. We did ride on up to section 3 of the river so they could see the rapid at Bull Sluice. (They have heard their daddy talk about this rapid because it's the one that he almost died on once...the river was way up and they capsized...anyway...the boys had been wanting to see it.) So Dalton walked all the way in but had to be carried back out bc his leg was just too sore to make it up the hill. Of course, I could have stood to have been carried out, but I digress. ROFL!

Here's a couple of pics of my cutie pie from today!



Mrs. Stacey (physical therpaist) checked Dalton's ROM on Wednesday at his appt and everything had increased again since his last ROM check on 5/29. Most things had gone up either 5 or 10 degrees (or percent? not sure which). Anyway, I still feel like Dr. S. will be happy with the increase in his ROM....just hoping that it's enough that the hip is easing back into socket and hasn't come out any farther.

I'll be updating on Facebook as I can and I plan to try and update the blog before we head back for SC on Monday. His appt is not until noon so it'll be mid-afternoon before you should be looking for any big update from us.

Keep us in your prayers for safe travels. Will update as soon as I can!

Much love to all!

We got the rx for both of the medicines that I talked about in the last post. The "V" didn't work AT ALL...neither did the "L". Though, I think that the "L" might work in some cases but probably not if he's in a lot of pain. Anyway, tonight he has gone to sleep just fine with no issues. I stretched his leg good for him before bed hoping it might help. There's really no way of knowing what helps and what doesn't. There are times that I think doing his stretching before bed makes him hurt but I don't know. It still seems that there is no reasoning or pattern behind when he hurts. He can be very active and I will expect a lot of pain and he does ok and then a day that he's not overly active he's in bad pain..and vice versa..sometimes after a lot of activity he's in a lot of pain...so I don't know. All I know is that tonight he's been asleep since about 10pm and here it is 2:30am and I'm still awake. I think I'm so messed up with my sleeping that there is no hope for me. I am tired but just haven't been able to fall asleep yet.

We leave for Baltimore early next Saturday morning with plans to take the boys to DC on Sunday to do some touristy stuff. Dalton's appointment is at noon on Monday.

Dr. Standard is the best....I continue to be amazed by what a nice guy he is. He gives one night of his month to us perthes peeps and he schedules an online chat. He is usually on there for about 2 1/2 hours. We go in order by when we arrive in the chat room and we are able to talk to him about any issues ongoing since our last appointment. There are actually even people that come to the chat that DON'T see Dr. S because of where they live or travel expenses, etc. He will even talk to them and have them email xrays so he can let them know his thoughts on the situation. he is just amazing! Anyway, last night was one of those chats. I told him about Dalton's improved ROM and he was very pleased..he did agree that increased ROM and the hip easing back into socket went hand in hand. Especially with Dalton's increased abduction!! YAY : ) He was concerned with the night time pain...last night was no different...while I was in chat sitting in the bed by Dalton he woke up 4 times crying w/his leg. Dr. Standard wants me to call the clinic this morning and let them know that he said he would call in two medicines for Dalton for us to try to work out the night time pain. (I am going to put space out the names of the meds to keep spam bots off the blog.) The two medicines are l o r i t @ b and
v @ l i u m. The 1st one would help with pain, obviously....I'm not too nervous about this one because Hunter had to take for a neck injury last fall and did fine with it. I also have a good friend that's daughter has to take this one pretty regularly for some joint pain issues she has. The 2nd drug I am a little more concerned about..I guess just bc I've never dealt with it period. However, I totally trust Dr. S and if he thinks it will help then I am willing to do it. He said that it will help w/the muscle spasms and cramps. I had told him I could wait until our appt on 6/29 but he said no for me to call today and he would have it called in.

Ok, so it's 8:30..time to call Baltimore and then out the door for our last day of VBS!! Have a good one everybody!!

Update on Dalton

First off, our appointment has been changed from 7/6 to 6/29. Dr. Standard is on vacation and they didn't want our appointment to be pushed out so we are in a week earlier.

As for Dalton he's still doing about the same. We have two or 3 good nights a week and then we have a night, like last night, that he tosses and turns a good bit of the night...crying out and reaching for his leg, dozing back off, repeating all this again. Then we'll have a night like last Thursday that he cried basically non-stop until about 2am. He got into pain about 11pm and I tried everything I knew to do...rubbing his leg, motrin, tylenol, warm bath w/lavendar...I even gave him ben@dryl to help him sleep....nothing really seemed to work until at some point he just fell asleep..I'm sure the pain stopped for him to go to sleep but it took a good while.

Anyway....we are still doing PT twice a week as well as exercises here at home the rest of the time. We are having VBS at church this week for 3 hours in the mornings and it's been a busy week.

I've had several people email and ask me about him since I've not updated lately. Thanks for checking in on us.