WOW....

Where does the time go? I could have sworn that I updated this blog last year in August (2010) when we saw Dr. Standard for the last time. At our last visit Dr. Standard was pleased with the xrays and how the hip was back in the socket. This is all in thanks to the physical therapy and constant stretching we did at home. He told us to go home and to let Dalton be a little boy...let him run, jump, climb, etc. So far so good with all of that. For a while we dealt with him being very clumsy, due to not using his right leg very much...we also still dealt with pain at times, mostly due to usasge. We have not dealt with the nights of screaming and waking up with pain in a couple of years. I am so thankful to be past that point with Dalton. That was the worse of it all was for him to hurt so bad and nothing really help the pain, loritab and valium included. He still has a little pain, here and there, mostly weather related or when he has been very active then he will limp a little or complain that it hurts. We also are still dealing with weight issues...the weight has not fallen off like we had hoped that it would once he went back to normal activity. I think, in part, it was that we dealt with an increase in appetite due to the steroids he was on and off of, as well as just getting into a habit of eating more (partly from steroids, partly from boredom), not to mention not being able to be active and how that puts the weight on..Now he is very active, but still "chubby." I am trying to work with him on that, but it is hard.

If you are finding this blog because your child has been diagnosed, we have a Facebook group and the ladies there have a wealth of knowledge to share. Please message me for info... Lori McLane Land on Facebook.

One Year

Tomorrow, Dec 27th, marks one year since Dalton was diagnosed with Perthes. We had spent the better part of the month of December with him limping and complaining of leg pain on and off. He woke up with the croup two days after Christmas and the nurse noticed his limp. We were sent to the hospital for xrays and blood work and we knew w/in an hour or so what the problem was.

What a year it has been! I found an amazing online support group that was my absolute saving grace those first few weeks. The ladies were so helpful whenever I had any questions. I am forever thankful for these ladies and how much they have meant to me over this past year!

Those first few months we spent dealing with local doctors. One here in Greenville, one in Charleston, and one at Shriner's. They all were nice, seemed to know what they were talking about, but despite the fact that Dalton had VERY poor range of motion (ROM) and his hip was sublexing (coming out of socket), they wanted to just watch and wait because of his age. Age is a big factor when you deal with perthes. The younger the child (and Dalton was just 4), the better they fair...however, from everything I had learned online from my support group and other articles, age shouldn't be the main factor in determining how a child does. The age only matters as long as they have good ROM and the hip is contained.

At the urging of the ladies on the perthes board, I sent an email to Dr. Shawn Standard at the Rubin Institute for Advanced Orthopedics in Baltimore, MD. In just a matter of days he replied to say that doing nothing was not an option for us and that we needed to be seen immediately.

We saw Dr. Standard on May 7th for the first time. He gave us our options and we decided to start with physical therapy and stretching exercises. We have not allowed him to jump in almost a year. Our poor boy woke up 3-4 nights every single week between Christmas 2008 and the first of August 2008! It was truly a miserable time for us. We tried everything from valium to loritab and nothing really every stopped the leg pain. One day it just stopped.

We have been to Baltimore to see Dr. Standard three times and the past two times he has allowed us to have xrays taken here in SC and then we just fed ex them to him and he advises us on what to do. Right now the stretching seems to be keeing his ROM in normal ranges. When we first started this journey his ROM was horrible in every single way it could be measured. At times he couldn't even pedal is bike.

Today we are just taking things one day at a time, one set of xrays at a time. His last xrays didn't look any worse and as soon as Dr. Standard is back from the holidays I am going to fed ex the xrays up there so he can see if he is seeing any regrowth yet. We will have more xrays the middle of January and we'll go from there, yet again.

Hopefully all Dalton will ever need is just stretching to maintain his ROM..but we know all too well that we could be facing surgery and/or bracing at some point in the future. We will continue to hope and pray for the best outcome for Dalton, regardless of what we might have to endure to get there.

Thank you so much for all your love and prayers and support this past year! We are forever thankful for everything!

Long time no blog!

It's been over a month since my last entry. Dalton is still rocking along doing mostly fine. If he over does it (like lots of running, climbing at the park, etc) then he's really stiff afterwards. His nighttime pain is basically nonexistent right now and I hope it stays that way bc it is the worst it seems. We'll have PT week after next with ROM numbers and xrays are to follow. Then we should hear from Dr. S. and go from there. Fingers crossed!

Update from Dr. Standard (WOOOOT!)

Dr. Standard's assistant, Barbara, called yesterday afternoon about 4:45pm and said that Dr. Standard had reviewed Dalton's xrays and ROM #s and had asked her to call. She said that he said the following "xrays look good, ROM is GREAT! Will send RX for xrays to be made in our town the first week in December and for us to plan to see him in Baltimore mid-late January". I'm very pleased with this report! I'm glad Dr. S. is watching Dalton so closely. This way if something changes we should catch it quickly and can correct it by adding more PT or something in the mix. I don't know what he meant by xrays look good..don't know if they just don't look any worse or if he is seeing re-growth or what. But anyway..whatever he is seeing is keeping us out of surgery right now so I think that deserves a great big WOOOOOOT! lol : )

As far as Dalton goes he's still having some night time pain...maybe not as severe as it was a couple of months ago but it's still there. Today he's complained a good bit about his leg and I'm not sure why because he's not been overly or underly (lol) active either way..just about normal for him.

Thanks for continuing to check on us!

Awesome update!

We had PT yesterday and Mrs. Stacy measured Dalton's ROM and he is within NORMAL RANGES on all of his ROM numbers!!!! HOLLA!! Every single one was in a normal range. Internal rotation was about 5 degrees less than "normal" but she said that anything off 5 degrees was still considered normal. Our goal is to keep it in normal ranges now. He has xrays next week and I'll be sending those, along with his super ROM #s, to Dr. Standard. I'm tickled over his ROM but I know that his xrays could also bring us trouble if they look much worse. Hopefully that won't be the case though. I'll update once his xrays are completed or once I hear back from Dr. Standard.

Thanks so much for all the prayers! We appreciate them so much!

Couple of Videos

This video features my online pal, Sandi, and her daughter Rachael. Rachael had perthes and had an external fixator. This video also shows Dalton's super awesome hip doctor, Dr. Shawn Standard. Sandi was gracious enough to invite us to her home for a perthes pool party last month when we were up North for our appointment.





This next video I will never forget...Just after Dalton was diagnosed with perthes I was googling and came across this on You Tube. I remember so vividly watching this and just bawling my eyes out. Tonight as I was on You Tube trying to get the embedded link to Dr. Standard's video I came across this video again. I never put two and two together, but this video is of a child named Tanner and I have come to know his mom, Alice, through our online perthes support group. Tanner is an amazing little boy. What an awesome video!



As for us, still hanging in there. Dalton has his ROM measured next week and his xrays the first week in October. Praying for good xrays and an increase in ROM!

sir limps a lot

We are going on a month and a half or so of *NO* night time pain. ***knocking on wood*** I don't have any idea where it went or why but hey, we are sleeping so WOOOOT!!! He is still complaining of daytime pain...it's hurting or aching..he is constantly wanting to put it up on something bc he says it hurts. The limp seems to be more pronounced at times but he still keeps on going and playing for the most part. Some days he wants his wheel chair and he'll ride in it around in the house..I think some of it is just playing, but then there are some days that he truly is sore. Since Dalton is so young it's hard to get him to explain to me what the pain is like so I don't know if it aches or if it's sharp pains or a pulled muscle pain or pain like a "catch"...no idea and that's just frustrating for me bc I wish I knew how it felt for him. He's such a trooper though, so independent! Poor baby is sick right now, not sure with what..he started complaining this afternoon that he had a headache and I felt his forehead and he was warm and his temp was 101.3. I asked him later after giving him meds for the fever and headache did anything hurt and he said "yes, my leg right here" and pointed to an area on his right thigh. He is still complaining of some left leg pain. I haven't heard from Dr. Standard yet but we have a chat coming up on 9/17 so I plan to send him a copy via email of Dalton's latest xrays and let him see if he sees any issue in that hip or if it's just from him favoring it.

In other news, school is going very well for us. Dalton loves doing school and is such a bright little guy. He can be a handful at times but he is absolutely the sweetest little thing. I just love him to pieces. I wish so bad that he wasn't going through this with his leg that he could run and jump and play without pain like other kids his age, but I know there's a reason for it all.

Here's a picture of him making a little lapbook in school with the letter "Gg".

hanging in there

Not much to report...Night time pain is *(hopefully)* gone for now. He's only woke up like once in the past month with his leg hurting, BUT now he complains of daytime pain and needs to "take a rest" several times. Not sure which would be better..I guess since he's sleeping better it's better for it to hurt more during the day. The past couple of days he's complained with his left leg hurting too so I did email Dr. Standard to see if he could look at the last xrays to see if there is anything that stands out in his left hip. I think it's probably just because of him putting the majority of his weight on his left leg.

So that's about it...he at least seems to be no worse..guess that's a good thing.

Home, tired, & thankful

Thanks, Allison, for updating for me.

Basically everything is just what she said. He said the xrays were "looking good" but that's because he did one extra xray (abduction style) and said that his pelvis was still in line and not responding by turning due to the LCPD. His xrays don't look any worse than the ones 6 weeks ago. His ROM was down a tad but Dr. Standard wasn't too concerned..said that there will be days that it will be down, either due to inflammation, activity level, or whatever. He said we are in a "touch and go" situation that at any point we may have to intervene and that's why right now he wants to see us every 6 weeks. He did agree to let us have xrays done here and have them sent up to him along with a report from PT regarding his ROM numbers. Based on that we'll see if it buys us another 6 weeks or not. I told him about the misery that is the abduction pillow and he told me to try it some during the day...stretch him and put the pillow on and let him watch 30 mins of tv a couple of times a day. He asid even an hour on is better than none at all.

So as it stands he have xrays the first week in October. Dr. Standard and I will talk via phone or email and he'll decide if he wants us to come on to Baltimore for the tenotomy (he calls it soft tissue release..where they clip tendons in the hip area to loosen the leg up) or if we can wait it out for 6 more weeks. Right now our next appt is schedule for 12/7.

Just keep sending up prayers and good thoughts our way. We are definetly hoping to get out of this without any surgery at all!

8/17 Appt Update

This is Allison updating for Lori....

No surgery right now. Xrays looking good. Pelvis still staying straight...nothing looks any worse than 6 weeks ago. ROM down, but said that was normal to be down from time to time. Keep doing what we are doing. In 6 weeks we'll do xrays here and send them and ROM up to him. If everything looks ok, we'll see him in 6 more weeks. Next appt is set for November 30th.

Lori will update more tonight or tomorrow.

Baltimore Bound

Heading out tomorrow....hoping for decent xrays, NO surgery, and all that stuff.

Possibly getting together w/some of the girls (and kids) from our perthes board on Sunday. I'm really excited about getting to meet some of the ladies that helped me and talked to me when Dalton was first diagnosed...They helped me keep my sanity during those first few months while we saw different doctors regarding Dalton's situation..and they still continue to be there always with an encouraging word.

Dalton's PT went pretty good today...he got his ROM measured again and it was back up just a little over what it was the last time it was measured. Not sure if it will be enough to avoid surgery this time but hopefully so!

We've had 3 full weeks of no night time pain and low and behold it started back up tonight. There is just no rhyme or reason to it! Ugh..it's so frustrating.

Wish us luck in Baltimore...we plan on doing a little more sight seeing while we are there..either in DC or the Amish Country (Lancaster, PA) or both. I'll either update the blog after the appointment before we head home or I'll have Allison do it for me. Our appt is at 8:15 Monday morning.

Your thoughts and prayers are so appreciated!!

Happy Birthday Dalton!!!!!!!!!!

Today my baby boy turns 5! Seems like yesterday he was just a tiny baby, but I imagine all parents have this same feeling. Time moves on once you have children. I just hope life will slow down a little for us. Dalton woke up happy but when his feet hit the floor he said he hurt and he decided he didn't want to go to Chuck E Cheese...then later he asked me for some medicine and said could we go. I believe this is the first time he's ever asked for medicine. His sleeping has improved..I've not wanted to jinx him..but it's been almost 3 weeks now since he's slept through the night. I don't know if the prednisone he was on for the croup kick started something or if possibly we have some re-growth or what. His running and walking look better to me most of the time..but he still seems really tight. I'm terrified that we could be facing surgery this time next week but today I can't and won't let my mind go there. Today I am celebrating with Dalton and we are going to have a blast at Chuck E!

And here's a LOL..this morning he woke up and once I told him Happy Birthday and everything he pulled the covers back in the bed and looked down at his legs and he said "I'm checking to see if my legs have grown bigger." haha He must have taken my "you're growing up" that I said yesterday literally! ROFL!!!

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 :(

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!

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!

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.