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