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 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 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 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 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

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'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


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 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 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 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 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 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 many people doing such nice things for us. We are so thankful!!

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