Saturday, December 26, 2009

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!

Wednesday, November 18, 2009

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!

Saturday, October 10, 2009

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!

Friday, September 25, 2009

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!

Thursday, September 17, 2009

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!

Thursday, September 10, 2009

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".

Wednesday, September 2, 2009

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.

Wednesday, August 19, 2009

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!

Monday, August 17, 2009

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.

Thursday, August 13, 2009

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!!

Monday, August 10, 2009

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!!!

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


Monday, June 29, 2009

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.

Friday, June 26, 2009

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!

Sunday, June 21, 2009

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.

Friday, June 12, 2009

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!!

Wednesday, June 10, 2009

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.

Friday, May 29, 2009

We have improved ROM!!!!!!!!!!!!!

Can I get a WOOOT?!?!

Ok, so on 5/11 his measurements were as follows:

flexion 90 (normal is 120)
abduction 15 (normal is 50-60)
external rotation 25 (normal is 70-90)
internal rotation 10 (normal is 40)

Today 5/29

flexion 105
abduction 40
external 60!!!!!!!!!!!!!!!!
internal 20

WOOT! The internal is still pretty tight but at least we have some improvement!!

Now let's just hope that the xrays on 7/6 show that the hip is going back towards the socket and not out anymore!

We are still dealing with some pain...he's been pain-free the past two nights (and he hasn't wet the bed so I know that his accidents are directly related to his hip pain!) If he has pain then he wets the bed...no pain=waking up dry! This holds true for daytime accidents too!

He's started having some pain..which I guess I could describe best as an aching pain..during the daytime. It's usually late afternoon and he'll whine and cry that it hurts. This has just started this week. I know pain is a very normal part of perthes, but it's still hard when you know it hurts them.

Anyway, today we are celebrating improved ROM!!! Thanks for praying, God DOES listen!!!

Here are a couple pics of his PT today...with his beloved Mrs. Stacy.


Monday, May 25, 2009

Rollin rollin rollin

Dalton spent Thursday evening, Friday, & Saturday in his wheelchair to try and give his hip some relief. Here's Hunter pushing him around through the house and Dalton wanted me to get a picture of his new gymmies.




Saturday Dalton got in the wagon and Hunter drove Dalton around in the driveway. Hunter is such a good big brother!



We have two wheelchairs..one is on loan, the other is ours. Hunter got out the other one and sat in it with Dalton while they watched Hannah Montanna....

Thursday, May 21, 2009

A little setback or just to be expected?

After FOUR blissful nights of sleep Dalton woke up FIVE TIMES last night crying with his leg. He was tired and cranky today, naturally. I got him to take a nap only for him to wake up within half an hour crying. When it was time to do his stretches he seemed to be a lot tighter and he cried and wanted me to stop. At this point we were pushing almost 4pm so I put in a call to Dr. Standard's office and left a message on the patient line. A resident doctor called me back within less than an hour and said that she had talked w/Dr. Standard and he feels that maybe we've just overdone it w/PT and stretching for us to be non weight bearing for 48 hours...no stretching, no PT...only wheelchair, couch, or bed. He said to give him motrin for 24 hours, even though he had said for us not to give it to him when we were up there earlier this month..he said for short amounts of time (ie: running a high fever, bad pain) it was ok. They told me they would be on call all weekend so if we needed them just to call.

I just don't understand what went wrong because I was really feeling like we were on the right track and we didn't really do anything any different yesterday than we have been doing. We did add in some water exercises (8, to be exact) but I just don't think that's the problem.

Hopefully the next 48 hours won't be too difficult trying to keep him down.. Yeah, right...who am I kidding? lol

Monday, May 18, 2009

Physical Therapy

Here's Dalton and "Miss Stacy", his physical therapist.




Sunday, May 17, 2009

I feel happier today than I have felt in a very long time. Dalton has such a hard time at night and yesterday we had a very long, busy (but FUN!) day. I just knew that we would be in for it last night..so as we were saying our prayers I specifically prayed that Dalton would be pain free so that we could get a good night's rest and make it to church for the early service. And guess what?! He slept the entire night without waking at all!!!! We got up around 7am and he was in such a sweet mood. His little leg was stiff but he was in good spirits. We made it to church, Sunday school, we went to Kountry Kupboard and picked up lunch, and have just had a nice day together as a family. It makes such a difference getting a decent night of sleep and just being refreshed by being in church. It's so easy to get out of the habit of going...and honestly for me I am such a homebody anyway that it doesn't take much for me to want to be home all the time. I just like being home. LOL There are times that I just dread having to be around anybody but then it's like once I actually make the effort and do it it's all fine and I'm happy and things are good. I think part of that feeling is just from being so tired. Ever since December Dalton has had issues most nights with waking during sleep and I think that having that much of a loss of sleep can make anyone be grumpy and not in the mood to be around people. Not to mention that all those Sunday mornings Joey would get up and leave for church and I'd be left sitting here really would make me feel so irritated that I was always having to miss out on everything. I already stay home with the boys and we homeschool so I don't get much of a break from things..not that I want one..being with my children is where I am the happiest, but anyway...getting sort of off subject...lol

Last night we had a Sunday school class party and it really left me looking forward for church this morning. The church service was wonderful this morning...a man in our church, Charlie Watson, is facing cancer head on right now. He shared his testimony this morning of how he feels that God is giving him this trial to pull him closer to Him. That really pressed on my heart. All this time I've wondered why, why, why...Why have we been so tested...Since April of last year we've dealt with my mom being diagnosed with thyroid cancer, Joey's brother passing away at the age of 27 the end of April last year, Dalton being diagnosed with perthes...Joey's grandmother passing away THIS April...and not to mention that in less than 5 years I have personally lost my Nana & Grandaddy (my mom's parents) and my mom's brother at the age of 52 from complications of diabetes. It just seems like so, so much..then last year right after Jason died Mrs. Kelly Evatt from our church passed away from a massive heart attack at the age of 42. It was like everywhere we turned someone we loved was dying or sick...and maybe all this IS for a reason. Maybe it's to make Joey and I stronger as a couple, stronger as Christians....there is a reason. We don't see it right now at this moment, but I trust that soon we will understand it all.

I'm sure that not every Sunday will be a day like we've had today and I'm sure that as long as we are in the "fragmentation" stage of Dalton's perthes (ie: the head of the femur breaking down and flattening) that we I will have plenty more nights of no sleep and missing church...but for now I am just happy about today.

Thursday, May 14, 2009

PT went good again today...he didn't get to get in the pool because something wasn't quite right with it so his pool appt was moved to next Wednesday. Dalton's still pretty tight and Stacy (his PT) said that she really doubted we would see much change in his ROM by next week. She said if we keep working hard we might see some by week 4. That makes me feel better because I was already feeling kind of sick thinking that it wasn't working at all yet. Tomorrow will be one week since we started the exercises. Dalton was so quiet around Stacy today. Poor baby is so tired. He gets up at least twice most every night. As soon as we got home and ate lunch he fell asleep and slept for two hours.

To elaborate more on how wonderful Dr. Standard is, tonight he is giving of his free time and dedicating an hour to chat with us on our perthes board. He does this to give us a chance to ask him any questions in between visits, but also for people that don't see him he will let you know what he thinks about your course of treatment. He is amazing! He truly loves children and he is so kind and caring. I don't mean to gush about him every time I blog...but it still just amazes me that he is as smart as he is AND he takes that much time with his patients. I will never complain having to wait to see him because I know he'll take that much time with us!! Dalton LOVES him and every morning when we do his exercises he'll say "I wonder what my dr is doing up there?" LOL And he refers to Stacy as his "little dr"...I wonder what my little dr is doing this morning. LOL He's so funny! All the girls at PT had a fit over him this morning because he was all decked out in his Spongebob swimtrunks, shirt, crocs w/jibbitz, and Spongebob towel. He was mighty disappointed that he couldn't get in the pool. Which cracks me up..you'd think he never gets in a pool..we have one right out in the back yard. lol

Anyhow, thanks for all the emails and cards and everything. Dalton loves getting cards (especially from Miss Marlee!!).

Monday, May 11, 2009

Therapy Update

Today was our first appointment. Stacey was our therapist..she was really nice. Dalton said he liked her a lot. Poor Stacey doesn't know what she's gotten herself into with Dalton...LOL She did her own evaluation regarding his ROM and she got basically the same thing that Dr. Standard did. She couldn't believe he hadn't been started in PT earlier. Stacey said that we would work not only with his ROM but with strengthening his right leg as well. The muscle is smaller and weaker in the right leg than in the left. She gave us 3 strength exercises to do on top of the ones that Dr. Standard gave us. We got back Thursday for a pool appointment so she can show us exercises to do in our pool.

He was really sore this afternoon and I ended up just getting him to take a nap about 4:30. He stopped taking naps a good six months ago but I guess to get him through this I'll just let him nap if he needs to.

Just please keep praying that the PT does the job for him!

Saturday, May 9, 2009

Stretching...

STINKS! Dalton hates it and I feel like the worst mother EVER having to do it to him. We have to do 6 exercises (5 on the sheet that Dr. Standard gave us plus one extra one he showed us) 3 times a day. We have to do each exercise in 3 sets of 20-30 seconds. Yesterday morning he did fine but by lunch he seemed to be tighter and he would beg me to please be done and then all afternoon he would ask me over and over if we had to do them at night. We did them right before bed and then he took a warm bath. He was in a lot of pain during the night last night too. We've got to do them here in just a few minutes before he goes to bed. Blah. They are time consuming and already I am sick of having to do them..yes, after only 5 times. I just pray that they will help and we can avoid that surgery. Several of the ladies on our perthes support group have given me good suggestions regarding the exercises so I am definetly going to implement them.

Today has been a pretty nice, fun day for us. Hunter had baseball pictures this morning and then we went to the grocery store. When we got home we did our 2nd set of stretches and went out to the pool...then Joey grilled us some steaks and hot dogs and we made salad w/stuff from the garden. It's been a fun day spending it together as a family. A lot of times we are all pulled in different directions so today was nice to just be home together.

Hope you all have a wonderful Sunday and Happy Mother's Day to all.

I will update after Dalton's first PT appt on Monday.

Friday, May 8, 2009

Full Appointment Update

Hey all...I only had like 5 minutes to update the blog before we left Baltimore yesterday. My mom took a lot of notes for me and I wanted to better explain everything that Dr. Standard told us.

I want to say, again, how much we loved Dr. Standard. I have never in my life met a doctor like him. He was funny, caring, very educated on perthes, AND made us truly feel like he really cared about us and our situation. Our appointment was at 8am, we were back in the room by 8:15 and we came out of the room at 10am..he was with us that entire time, other than the 5 minutes it took to do the xray. I had a huge list of questions and he answered all but 3 of them without me even having to ask..that's how thorough he is. Most of you that have talked to me a lot, especially you perthes girls, know how nervous I was...so afraid we were going to see him and then face more difficulty for Dalton...all I can say is if you are in a situation like we were and just didn't feel 100% like what we were doing was right then I say please do everything you can to get to Baltimore to see Dr. Standard. It took us about 12 hours driving..about 2 hours of that accounted for stops for fuel, potty breaks, and swinging through drive thrus..we actually didn't stop and go in anywhere to eat. We took chips, crackers, and drinks and we just got a burger or sandwich somewhere. It was a long haul, for sure....but there is nowhere else, and I mean NOWHERE ELSE, that we would take Dalton now.

So the biggest question that we had was "how can 3 doctors tell us to do nothing and you feel like we need intervention?". His reply was that children Dalton's age typically do pretty well with perthes...about 80% of all children his age diagnosed do well w/out intervention..but what about that 20%..if Dalton was in that 20% would we still feel ok with doing nothing. No, of course not. He said that perthes can be different with every child, which we knew. He looks at each child individually and makes a decision based on the CHILD, not on statistics. He says that he certainly take Dalton's age into consideration because he knows he has much more room for growth and healing without having to do major intervention. With all that said, he said that two things with Dalton are very concerning...his ROM (range of motion) and the fact that the head of his femur is shifting out of the hip (basically the hip is starting to push out of socket). So taking Dalton's age into consideration he said that doing nothing won't help with Dalton's poor range of motion and poor range of motion was what was forcing the hip out of socket. If we can tackle that problem then we are (most likely) on our way to doing fine. He said that when you see bad signs you start to ignore the age of the child and treat the problem.

We will start out with PT (physical therapy) 2 days a week at Clemson Sports Medicine and then I have to do 5 different stretching exercises with him every day as well. I will post a pic of the exercises, but they are to be done in 3 sets holding each for 20-30 seconds. He wants to hear from the physical therapist in two weeks to see if we have any improvement. If we have some improvement we will continue PT thru the end of the first week in July. We will then see Dr. Standard on 7/6 to be evaluated again. If after two weeks the PT is NOT helping then we will most likely have a phone consult w/Dr. Standard to determine if we are going to move forward with the next step. If the PT is helping we will still see him on 7/6 and will most likely continue with another round of PT and be checked again. We have to have almost full range of motion to get the head of the femur moving back in the socket.

The next step if Dalton doesn't respond to PT will be surgery. As freaked out as I was about this before I honestly think had Dr. Standard wanted to do it yesterday that I would have been just fine...that's how wonderful he is! He said that if Dalton doesn't respond to PT that what we would do next would be to go in and do a double tenotomy and core decompression. The double tenotomy would clip two tendons in Dalton's right hip, he would then inject botox in Dalton's muscle to help him do PT with ease. The core decompression is a little more difficult to explain, but basically he drills a small hole into the head of the femur...the head of the femure then has a reaction to the trauma and it stimulates regrowth..in some cases speeding up the process of perthes. This surgery would most likely require one night stay in the hospital and then we would go across the street to the Hackerman-Patz house (sort of like a Ronald McDonald house) for one more night. He would want Dalton's pain under control before we headed back that far in a car. Also, if he has this type of surgery then he would be in braces for 6 weeks night and day, except he could remove them to shower and swim. Then he would wear them for probably 6 months at night.

He says that he feels like we have another good year to year and a half of fragmentation before we can expect to see any bone regrowth..and perthes can change at the drop of a hat with a child...but right now we feel hopeful that the PT will work and that at most he would have to only have the tenotomy and the core decompression. He says that he feels by tackling this soon that we could most likely avoid something like the fixator on down the line. Of course it depends on how Dalton responds, but right now we are feeling good about this.

He can't jump at ALL..so if any of you see him jump..stop him! LOL!! He's so bad to jump down stairs or off of something like the couch..he's all boy for sure! The jumping will just further force the hip out of socket to where the PT we do won't really help. So the only restriction is no jumping.

I will start exercises with Dalton today...pray for us because the last time I tried to do any he told me he wanted to "go live wif my mimi bc she doesn't do mean stuff to me". lol The exercises are going really try to stretch him out and will probably cause more pain for him for a while until he gets used to it. Our first PT appt is Monday.

Thanks again so much for your love, prayers, cards, calls, txts, FB watching (lol), and financial gifts. Every single thing means so much to us. Just knowing that you care for us really means more than anything.

Thursday, May 7, 2009

Appt update

This is going to be quick...I will elaborate more once I am home and have the time.

DR. STANDARD IS FABULOUS AND WE LOVE HIM! He took an hour and a half in the room w/us explaining things, answering questions. He is so nice and caring. I can't say enough good things about him. THANK YOU to all my perthes group girls that pushed me to call him. I met 3 ladies from our group over these 2 days!

Bottom line...He sees things that are concerning..mainly range of motion and the head of the femur coming out of the hip. His internal rotation is 20%, external is 15%, and his abduction is only 10 degrees...so he's VERY tight. He said that we can do one of two things.

1. Physical therapy w/a therapist 2xs a week and the other days at home for 4-6 weeks.

2. Go ahead with tenotomy (clipping of tendons) and core decompression (which is basically where a small hole is drilled in the head of femur and it stimulates regrowth).

He said if it was his child he would start w/the PT.

We have opted for physical therapy. Our next appt is 7/6. We will see how the PT is working...if it is then we will continue it for another time period and reevaluate. If the exercises aren't working then we will go forth with the surgery and we will discuss it and set it up at the next appointment.


He even gave us his cell phone number...he is wonderful.

Thanks so much for all the prayers and everything. We are about to head back for SC now.




In the meantime, he wants no jumping at all...no trampoline, no jumping out of a car, off the couch, etc. He wants him swimming and bike riding.

Wednesday, May 6, 2009

I had a big long post all typed up but I seemed to ramble way too much so I just erased it all.

Let's just suffice it to say that we're here in Baltimore, we are all fine, I am very anxious about this appointment...just ready to figure out what's best for little D and move foward.

Will update as soon as I can tomorrow.

Tuesday, May 5, 2009

We are planning on leaving around 4am tomorrow to head towards Baltimore. As it turns out, it will be my parents and me and the boys. Joey is hanging on to see what will be done so that he can take the time off of work to stay in Baltimore with us if Dalton does have to have surgery. I will update here if I can, but most definetly on Facebook via my mobile.

Wish us luck and sanity. I love car trips..but 20+ hours in two days should be a REAL joy. lol

Thanks for all the love, prayers, and support you have shown us. It's amazing how kind people are. A very dear friend of mine that I met through a preeclampsia support group sent us a Subway gift card to help out on our trip...so many people doing such nice things for us. We are so thankful!!

Keep us in your prayers. I will update as I can.

Wednesday, April 29, 2009

Thankful

These past two days have been like a whirlwind but it looks like everything is coming together for us. Dr. Standard did not want us waiting to see him until June..they have a full calendar. He told Barbara, his assitant, to schedule us for an 8am appointment. That appointment is next Thursday, 5/7 at 8am. We will leave Wednesday morning and plan on just coming back after the appointment on Thursday. There is a slight chance that if he does deem surgery necessary that we will just stay up there and let that take place within a day or so. I'm not sure who is going with me to Baltimore at the moment..I'd say it would be a good chance it'll be my dad or Marie (Joey's mom). My dad is funny about two women being alone in this day and age, where as Joey doesn't see why I can't just take Dalton and go by myself...LOL...so I will just see how it works out. I'm not afraid to go alone..it would just be easier having someone else to travel with. There is nowhere to stay close to the hospital that is less than $100..so this morning while I was talking with Barbara she said that there was a house on hospital site that you could stay at if it was available...and thank the good Lord it was!!! $40 a night! It has 18 rooms, playrooms, etc. She said that if we had to have surgery that if it's available we could stay there the entire time! Yay!

We are going to the mountains this coming Friday with my parents for the weekend. We've had this scheduled for a while & I'm so thankful we did especially now not knowing what could happen with Dalton. I'm hoping this weekend I can just clear my mind from all these worries and just have a good time. I know he's going to be fine..it's just the thought of the surgery and stuff that is frightening. He's never had to be put to sleep or anything.

Tuesday, April 28, 2009

Baltimore

Looks like that's where we are heading. The dr that I spoke of in my previous post replied to me...I had actually sent him the email the very end of March but somehow it got tangled between two of his email addresses so he replied to me again last night. Here is what the email says:

"I have reviewed Dalton's x-rays. Although Dalton is in a favorable age group for perthes- he has significant collapse and lateral shifting of his femoral head out of the cup of the hip. His hip would be categorized a Herring B/C - that means doing nothing is not a good option for him. The exact treatment plan would depend on his physical exam- the treatment could be as easy as a soft tissue release around the hip performed as an outpatient with subsequent stretching exercises and bracing to as complex as a hip distraction surgery where a external fixator is placed on his hip to unload the collapsing femoral head. I recommend that you and Dalton come for an evaluation in Baltimore- Sinai Hospital. Call Barbara at 410-601-9570 and schedule an appointment - since perthes is a time sensitive condition, Barbara will prioritize your visit and work you in as soon as possible.

Take Care,

Shawn C. Standard MD"


Wow. I am shocked, sad, hopeful..I just feel so many things. A million things are racing through my mind. I guess in reality I fully expected him to come back and say that he agreed with what we had been told due to Dalton's age he would do well without intervention. If you look at the 3rd xray picture in this post (click on it to pull it up big) you can see exactly where there is "lateral shifting of his femoral head out of the cup of the hip". This is a bad thing and needs to be addressed...however, I don't understand why neither of the two ped orthos we have seen in the past month have mentioned it. We have tons of questions, naturally. This dr. is THE dr for perthes...possibly in the world. Tons of people from all over see him for this. This is one of his specialized areas.

I called Dr. Standard's assistant, Barbara, this morning and as soon as I said my name she asked "Dalton? Yes, Yes, Dr. Standarad has told me about Dalton". I just about lost it...for him to have us on his mind..to come to work and tell Barbara that we might be calling..he must be a truly caring person. I am awaiting a phone call from Barbara this afternoon so that she can go over any questions I have regarding the appt and then we will set something up. She said the appt would be on a Thurs a.m. and right now we are looking at 5/7 or 5/21.

We most likely will have some tough decisions to make. Here is a picture of the external fixator that he mentioned in his reply to me.

The site of this thing makes me sick to my stomach...to think that this has even been suggested. However, it's not a definite that this will have to be done...and quite honestly, we might turn down this option for Dalton right now and go for something less invasive.

Just keep us in your prayers. I will update once we know when the appt is.

Sunday, April 26, 2009

Sigh...I am not sure where to start...I can't think of the last night I had a full night's sleep. I am so tired..so conflicted as to what we should be doing for Dalton. I'm afraid that my friends at church think that we (me and D) have just stopped coming. The thing is...nights and mornings are the WORST for Dalton...I imagine for most perthes kids this holds true as well. At night Dalton will fall asleep...maybe sleep for an hour or two and then the spasms start...it wakes him up..he cries, he moans, he tosses and turns..and even when he's not fully awake and crying he's tossing and uncomfortable. He's not getting a good night's sleep..I'm not getting a good night's sleep. The last thing I want to do is wake him up after he's had an especially rough night. Like last night for instance...we went to bed around 10am..hoping to get a good night in so we could go to church. About 30 minutes after he went to sleep he started whining and tossing around..then he was fully awake and crying..and when he's that tired it's just miserable for him. He can hardly hold his eyes open so he's just laying all over me and bawling. Then I'll get him to lay back down and I'll rub his back and he'll doze back off only to start it all up again within a few minutes. So once I finally get him completely settled down and not stirring...he wet the bed. So up again at 3:45 to change him, the sheets, etc. Of course, I'm up at 6:30 with Joey and Hunter as they get ready for church. I'm not just laying in the bed laying out. I'm up, wishing I could be there too. Hunter is sad because he knows I want to be there so he cries wanting me to come pick him up right after preaching. It's just causing such issues for us. (I didn't pick him up and Joey didn't bring him home..so I'm sure he was just fine.) So when Dalton finally gets up this morning we do his stretching exercises and he gets in the tub to try to help with the soreness and he gets out wanting to put on his "soup and tie" and go to church..which by now is basically over. I suppose we could go to the late service, but Joey goes to the early one bc he sings in the early service every week. Ugh..it's so frustrating.

We are also dealing with Dalton being SOOOOOOOO ill. He will tell you that his leg hurts on and off all day..I am to the point that I think it's almost like a headache or a toothache..you know, just the dull ache..so he's grumpy..will cry and fuss at anything that doesn't suit him well..so the last thing we want to do is to wake him up early for ANYTHING! During the week if he's had a rough night he will sleep until 10:30 or 11am. I am just so thankful that we are homeschooling...that way when he starts kindergarten this year it won't even be an issue. He can get his rest and still be able to do school.

Yesterday was the first day that he was able to really use the pool and he swam a lot but last night was horribly, horribly sore. We took them to get an ice cream last night and just from riding the 15 minutes to the DQ he could hardly walk when we got out of the car. I am just hoping that he was so sore last night bc the pool was really working his leg and within a few days we'll maybe, hopefully, see some improvement.

I still feel very conflicted as to what to do for Dalton. I know we have seen 3 doctors..but to sum it up here's what they are saying. (Not in order of how we saw these drs)

1. Dr. @ MUSC/Charleston--she says if he's limping he needs to be couched..for us to limit his activity based on his pain/limp level. Defintly no running or jumping or climbing. If his ROM (range of motion) gets below a certain level she will cast or brace him. She showed us one exercise to do.

2. Reg ped ortho---says that pain is normal, Dalton's age is on his side..to let him do anything he wants (including the trampoline) because he would rather him be in pain but be active bc being active helps the ROM (but I have seen conflicting things on that as well..being that if he's too active then it causes further damage to the hip socket, therefore further decreasing the ROM).

3. 3rd ped orth--at Shriners...says basicallay the same thing as Dr. #2...BUT they both work for the same hospital system, therefore they consult with all the ortho drs so that they are on the same page as to how to treat things like perthes. Told me to do some stretching exercises which are basically just how he moved his leg when he checked it.

Of course I've done plenty of research online and while Dalton's age is on his side, it shouldn't be the ONLY determining factor for how to treat him. If having him swim and treating him with exercises were all we would need that would be great..I'd be thrilled! But I hate to just act like I'm blind to all the information that is out there..and I'm talking publications from places like John Hopkins Medical Institute...

There is a ped ortho in Baltimore, MD that is supposedly one of the best in the US when it comes to dealing with perthes. I've emailed him with some xray pics and a video that shows Dalton's ROM. I have heard he will do email consults with you to see if he can help you. I just want to see if we are on the right track. If he replies and says that our drs are doing exactly what he would then I will be fine. Thing is..from Dalton's xrays he has almost full head involvement which ups his chance of having to have intervention at some point..at least according to the info available online. It's very hard to think that there is nothing you can do for your child. I know perthes is painful but it's hard when they are hurting. It just seems like there should be something, anything, you could try to do to make it better.

Then yesterday I got an email from a lady named Stacey..we've corresponded some via email..Her son, Simon, is Dalton's age and was diagnosed with perthes in October. At Simon's last appoitment the decision was made to cast him. She sent me the picture yesterday evening and I just cried..for him, for Stacey...for us wondering if going down that road is in our future. I feel so bad for whining or complaining..I mean, afterall, Perthes is not life threatening..just life altering. It's not like cancer..it's not going to take their lives. It's hard, though, just the same. I guess everybody is fighting some kind of battle.

Thursday, April 23, 2009

Shriners Appt Today

I am tired so I am just re-posting exactly what I posted on my Perthes support group..



The appt went fine...long..but fine. The nurse came in and asked us a lot of questions. Then we waited about 2 hours and a resident dr came in. She also asked us basically the same questions that the nurse asked...then she wanted to check his leg. She moved it and bent it all kinds of ways..you all know the drill. Then she said that she was going to get the dr and they would review his xrays (they didn't take any new ones since he just had them done on 3/30) and would be back in to talk to us. They come back in and the doctor talks to us and then he proceeds to also check out Dalton's leg. He just said that basically Perthes is a very controversial topic because there really isn't one certain way that is right or wrong to treat it. He said that with Dalton's age that he really expects him to do ok...there could be complications but that is why they keep an eye on it. He said that if he was 8 then they would be more aggressive...but at age 4 he expected him to do fine. That's basically the same thing his regular ped ortho is saying as well. He said that pain is part of it...he didn't seem overly sympathetic about the pain to me......but that might have just been me. The regular ped ortho just seems more "sorry" that Dalton is hurting....the one today just like yeah, pain is part of it..he'll be fine. He said to treat the pain with motrin, which is what we've been doing..He also said that if he's limping badly or in pain to limit his activity, but he also understood that he was 4 years old and that's a challenge in itself.

Of course, poor Dalton has been so sore this evening and one time even had huge crocodile tears because he's hurting. He always seems to hurt worse after his leg has been moved so much in those positions that aren't comfortable for him. He wants to see him in 6 months. How often are your children seen? Our regular ped ortho wanted to see him back in 4..but this one says 6.

We were very impressed with Shriners...everyone was so kind to us. When we first walked in they gave Dalton a stuffed animal to take home..and he loved the waterfall and all the toys, etc. He didn't want to leave when it was time to go. lol

Wednesday, April 22, 2009

Shriners Tomorrow

I'm nervous...I'm always a little nervous before an appointment. I guess because with Perthes things can change on a dime..what you are doing now might not be working out come next week..so it's always a little nervewracking for me at appointment time. I feel like they will probably be on the same wave length as Dr. Beckish because I think those doctors consult w/each other regarding how to treat certain conditions. I don't know. We'll see tomorrow I guess. His appointment is at 1pm. I've updated Facebook mobile but haven't used it to do status updates yet.....I'll definetly be updating the blog tomorrow evening.

Sunday, April 5, 2009

Dalton is still having trouble at night. He wakes me up now most every night in pain..most often times it will be 3 or 4 times. He's now complaining of pain in his left leg and I just feel like my heart is sinking...I surely hope that it's just him using his left leg more and not the perthes starting up in his left leg as well. That will stink! There won't really be anything that would be done differently, at least I don't think so, but it will just be twice as hard having both legs affected. Please just pray that it's just him overcompensating. He woke up from a nap today crying and pointing to both legs...same place in both legs. :(

In much, much, much happier news....we got a pool!!!!! It's just one of those small Quick Set style pools from Wal-M@rt but it will serve the purpse that we need. We found two places locally that would take Dalton. One was just over $100 a month, the other was $45 but it was about 30 minutes away from where we live. With the cost of the pool that we purchased it would be paid for based on the cost of the other places in just a couple of months. We got the pool on Friday and then yesterday morning Joey decided we should go ahead and get it put in before anymore rain came our way..so my parents and Joey's dad came over to help. We had to get the ground good and level out in the backyard and thankfully Joey's dad has a tractor so it made the work much quicker! We started about 10am and by 4pm we had water starting to fill in the pool! It was complete by about 8pm last night and today after church the boys inhaled their lunch so they could hit the pool. It was quite warm here today..our themometer outside showed 82...but that water was COLD! I don't know how they stood it. They swam on and off until about 4pm this afternoon. Please just pray that the pool will be good therapy for Dalton. Swimming is the absolute best thing that a perthes child can do. The water keeps them weightless so they can freely do whatever they want. Dalton's a pretty good swimmer too so as soon as I can stand to get in the water I am going to work with him to make sure he's really working his legs.










And one happy, happy Dalton!! : )

Wednesday, April 1, 2009

Monday, March 30, 2009

Appt update!

Well...there really isn't much to report. His xrays and his ROM were worse, but the dr said he expected it to be. He watched him walk, tried to get him to run (but Dalton would not...), had him stand on one leg and then on the other, etc. He asked me several questions about if he kept up with other children. I told him he didn't keep up in running and climbing, but he doesn't let it stop him...he still plays. There is just a tiny bit of flattening or something now on his left hip and he said that he *thinks* right now that maybe Dalton is overcompensating with the left leg..but then he asked me if I knew that having it in one leg gave him a little higher of a risk of having it in the other...which I knew. He said to give him both tylenol and motrin at bedtime. I just hate to have to give him medication every day. I did give him motrin tonight at bedtime because he seemed to be more sore today. I will give him tylenol if he were to wake up tonight. I told him that we had an appointment at Shriners..he said we would love it and that if this was his child that is where he would take them..bc he wouldn't treat his own child. I went ahead and scheduled the follow up w/Dr. Beckish just in case Shriners doesn't work out for some reason.

Here's the latest xray pics (lol..I figured I would try to cover him up just a tad.)


You can see on this part on the left side of the "rounded" part that it is just a tad flat. Any of my perthes girls want to comment on this for me???




Oh and here's a cute picture of Dalton and Katie looking out the window last week at our non-stop rain! lol


Saturday, March 28, 2009

Pain and appointment confirmation

Appointment with Shriners is 4/23 at 1:00pm with Dr. Gibson.

We will be keeping our appointment with Dr. Beckish this coming Monday, 3/30 at 9:10am. We just felt like the end of April was too long to wait until he was seen, especially since we know that his ROM has worsened.

Last night was hands down the worst night we've had with pain. He got up 4 times crying with pain and basically the rest of the night he tossed and turned and moaned and would reach for his leg. It was rough...we didn't get much sleep. This morning he's stiff, but that's not unusual for mornings on a good day.

I always get so anxious around appointment times just not knowing if this is the time that they will say that he needs some kind of surgery or braces or something. It could never happen, but there's always the chance that it will. I know we'll be fine regardless..it's just that fear of the unknown that stinks.

I will update after his appointment on Monday.

Tuesday, March 24, 2009

Prayers have been answered!!

WE HAVE BEEN ACCEPTED AT SHRINERS!!!!!!!!! Yes, you heard me right! Just found out this morning that he's been accepted....I have absolutely cried my eyes out from just sheer happiness! This is going to be such a blessing for us! You wouldn't believe, even with GOOD insurance, how much we've had to pay out of pocket for xrays and so forth! The lady that I spoke with this morning told me that I should know within the week when his first appointment would be.

As far as Dalton goes, he has good days and bad days. He may do relatively find during the day but cry with leg pain at night, or he may have some episodes of pain during the day and sleep fine at night. The limp is always there now. In the beginning he might limp some and not some but now he limps always. Sometimes it's worse than others, but definetly always there.

Yesterday we were at my mom's and he went to get on his Radio Flyer tricycle (and I specify the kind so you would know it's higher than a hot wheels or something) and he had his left foot on the pedal but was struggling to get his right leg up and on and he screamed out about his "stupid, stupid weg!" and just cried. Me and Mama had tears in our eyes and Mama said "bless his little heart". He's never had trouble like that before. He just let his right leg hang out and he pedaled with just his left one. :( My poor baby. He gets so frustrated with it sometimes and he will say that he wishes Ju Ju's weg hurt for him. (Ju Ju (Julie) is my sister and she told him one time that she wished it was her leg and not his...) This is a definite issue with his ROM (range of motion). It is definetly, definetly worse.....

Along with new doctors comes that fear of not knowing what they will do for him...they could do this wait and watch approach, or they could be more aggressive with it. Guess we'll just pray that whatever is needed is the best thing for Dalton now and for the long term!

Wednesday, March 11, 2009

Hopeful of getting into Shriners!

I don't have time to go into the details at the moment (both of the boys are sick and I am exhausted!), but we filled out an application for Shriner's and Dalton's case was going to be presented this evening. If approved then it will go to the next stage and I believe they will bring him in to evaluate him and then a team of dr's will review his case to see if they can help him. We were told that the only way he wouldn't be accepted were to be if they didn't think they could help him. So we are hopeful that he'll get in.

Please pray that this will be an answer to our prayers.

Sunday, March 1, 2009

Pain

Gah...so I posted last on the 19th that he'd been limping and stiff for about a week...well he's still doing it. There's been no let up in the limping or the stiffness. And out of the past 5 nights he's gotten up twice a night on 3 of the nights. He will just cry and roll around and moan and sit up and lay down and scream out and want me to hold him and then scream when I try to move him. It's very frustrating and it's so hard as a mom to NOT be able to make it better or to be able to tell him that it "won't hurt tomorrow!" His ROM (range of motion) still stinks. If anything, I think it's worse...we do the exercises but I can't really tell that it's helping. It's like we are just stuck. He's limping bad at times and should be couched I guess..but then if we limit his activity then it makes the stiffness worse. So I just don't know what to do really. It makes it hard for me to let go because he is afraid of his leg cramping and hurting and not having somebody with him that can help him. He will cry and say he doesn't want to go to Awana and I know it's his leg because he LOVES Cubbies! I just feel torn because I can't be everywhere and do everything so we just end up sitting at home...and that's hard too because we are home ALL.THE.TIME.

Don't get me wrong...I hate to sound all doom and gloom. Life is grand in the grand scheme of things. School is going well for Hunter and I am working with Dalton on Teach Your Child to Read in 100 Easy Lessons and he's doing SO good and he's so proud of himself that he's starting to sound out letter blends. We do lots of fun things with school and we do have some play dates. Both of the boys got into poison oak back in January...then Hunter got into it AGAIN in a different spot (in the woods behind our house) and I had to call the on call pediatrican for our pediatric group this evening and she called him in another round of prednisone because instead of completely going away it just flared up again this weekend. Hunter had a sinus infection at the beginning of the month and then Joey got sick with a cold/sinus infection and we all followed and Hunter got it again as well and he didn't seem to be able to shake it so finally the pediatrician put him on an antibiotic this past Friday. So now he's on both the Omnicef and the prednisone. We are steering clear of sickness as much as possible. It's just too hard. I feel like between the poison oak and the sinus infection(s) that one of us has had something since the beginning of January! I'm hoping if we can just hang on another week or two that the sickness will all go away and we can be back to some kind of a normal routine!

That's about it for our update. Poison oak, sinus infections, and leg pain...we are a wild crowd! ha We are really hoping to see a little snow tomorrow and then we are ready for Spring to get here soon!! :)

Thursday, February 19, 2009

Limping along....

lol...Pun intended. But at least I can laugh about it right? :) We've not had any real incidents since the last update...but he's been pretty stiff for about a week and has limped a lot and just complained that it hurts.

We went bowling yesterday...he really enjoyed that.

Sorry for not updating in so long, just nothing much to update about really. Next appointment is just a little over a month away and we'll just go from there and see how xrays look then.

Thanks for still checking in on us.

Thursday, February 5, 2009

What mortified feels like...

So remember my post saying that I was afraid of jinxing Dalton? Yeah, well....I did. So from here on out..if I have no posts, then just assume that he's doing ok.

Hunter has had a cold that has turned into a nasty sinus infection and he's feeling rotten so I took him to the dr this afternoon. While we were sitting there Hunter kept crying a little because he felt so rotten. Dalton was being SO good..sitting right in the chair beside me watching tv when all of a sudden, totally out of nowhere he starts screaming and falls out into the floor. He's having one of those stupid spasms in his leg. He's screaming and crying and if I try to pick him up out of the floor he's screaming "don't touch me!!!!!!!" (but not being ugly, just not wanting to be moved bc he's in pain.) I just keep rubbing his face and telling him it's ok while the entire waiting room looked at us. I know that half of them thought he was just showing his tail. I finally looked at the few people right there at us and said "he's got a problem with his hip and it causes his leg to have spasms in it and there is nothing we can do..he just cries and it will eventually stop." Now had we been home I expect it would have passed quickly, but considering we were surrounded by staring strangers it lasted a good 10-15 minutes. My cheeks were literally burning red...I was so embarassed. I sent Hunter to get one of the ladies in the office to come and help and she asked what we needed and I said, fighting back tears, to please just get us out of the waiting room. So she ran and got a wheelchair and I just picked him up, still screaming, and put him in it and we got to the back and in a room and he finally settled down. Now he's just more sore and definetly limping worse.

And so it goes, I'm home alone with one with a sore leg and one throwing up w/a headache from a sinus infection. Woooooha!

Just remember, if Dalton's ok, then I won't be updating! LOL!!!

Wednesday, February 4, 2009

Doing pretty good....

I hesitate to even write that Dalton is doing good because I am positive I am a jinx. LOL! Other than having a limp and just a time or two of saying that his leg hurts he's done pretty well since last week. Last week (Mon-Thurs) he hardly limped at all...then he started limping on Friday and has limped, more or less, since then...but he's not complaining of lots of pain either. I know it's probably just one of the times that he's going to do good..I know that the pain is bound to find us again just due to the nature of perthes..but I'll count the good days as blessings and just be thankful!

Friday, January 30, 2009

Worth A Thousand Words

Look at that face....




After hardly any limping and pain this week he has limped all day...but he has felt good and jumped on the trampoline a pretty good bit. I hope he hasn't overdone it today! I guess bedtime will tell....Fingers crossed!

Thursday, January 29, 2009

Dr appt update!

For the first time since this all started I really and truly feel hopeful about the situation. We saw Dr. Beckish again today. Today he was in no rush, he actually sat on the patient table and talked with us for a good 10-15 minutes about everything. When we first arrived he asked us what was going on and I explained about the spasms. He asked if they were waking him up...I said yes. He checked his ROM (range of motion) and he made mention to the resident that was with him that the it was further decreased by 20% internal and external by 10%. He wanted to take more xrays since we were there....he said they were more or less the same. He said that basically perthes was a "catch 22". On one hand, if we limit his activity he is not in as much pain but his ROM will further decrease, leading to possibly surgery to release tendons in the groin....on the other hand, by letting him be as active as he wants to be (running, jumping, climbing, bike, etc) that he will be in pain but it will most likely keep his ROM good. He said he would rather see him have a day or two of pain for every 2 or 3 days of good activity vs him become further limited in his ROM. This makes perfect sense, and I basically was reading the same thing to Joey last night off of the internet. He said that 10 years ago when he went thru medical school that you braced or casted every child but that now studies showed that in most cases one doesn't make any difference over the other. He said that in the years that he has practiced he has never braced or casted a child...traction, yes, but none of the other. He said, of course, every case is different and it's not to say that it could never happen but most likely not. We are quite pleased to hear this....but the only down side for us will be to deal with a pain increase for Dalton. He was a little more active on Saturday than he has been and Sunday afternoon and evening was rough. Three episodes of screaming with spasms and a very sore leg. He was going to write him a rx for v@lium but I told him about the Cl0nidine that the ped had written and he said to most definetly give that to him that he had no problems at all with that medication it would help him. I told him that I saw no difference in giving him 3 doses of motrin a day and he said if he had a spasm to give the motrin immediately and for 2 days following, otherwise not to give it to him if I couldn't see a difference.

So all in all I think it was a good appointment....we'll see soon enough how things go with allowing him to be more active. He's not been too active since his appt in Charleston earlier this month so we do look for an pain increase..but at least we know this will be normal and it's not necessarily a bad thing (meaning worsening of the disease). He also said that he would consider Dalton in the fragmentation stage...so the next stage for us would be that blood flow would return and then new bone growth...But it's a lengthy process so it could be 12-18 months before this starts.

We just ask that you continue to keep us in your prayers!

Wednesday, January 28, 2009

Suprise in the mailbox!

In the past week Dalton has received two nice suprises! On last Thursday the mail lady delivered a box to "Hunter and Dalton Land" and my great aunt Flossie sent the boys each a small remote control car. So sweet of her! She figured it was something they could do that wouldn't be too active for Dalton. They love them!! Thanks Aunt Flossie!!! Love you!

Then today we only had one envelope in the mailbox and it was to Dalton. I won't say who it was from in case they don't want to be called out on it...but they sent Dalton a sweet card and $20. Now Dalton loves him some mail but you can imagine his suprise when out popped a $20 bill. He kept "snapping" the money and saying "wooo hooo!" It was so cute. So very, very thoughtful of this person as well. We have sent you a card, but I want to say here too, "Thank you so much!"

The thoughtfulness of people just amazes me.

Dalton's appointment is tomorrow afternoon with Dr. Beckish. I'm going to see if we can get an answer to these spasms he is having...several things I have read talks about spasms and hospital traction for a brief time..but hopefully we won't have to go down that road. He just wasn't having the spasms when he saw Dr. Beckish the last time, nor the dr at MUSC for that matter..so it's just something that needs to be brought to his attention. I'll update tomorrow evening sometime.