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".