Tuesday, January 13, 2009


Sorry so late but I'm just now getting around to having a few minutes to think and get this post done.

First off, thanks to Allison for updating for me...I was able to email and get on Facebook easily with my new cell but it's a touch screen and just not so easy to do a long blog post with. (For those that don't know Allison...we've been best friends since the 10th grade.)

So basically there isn't much else to say really...the trip down was tough just from the physical aspect of it. Dalton is a solid 60lbs so my dad struggled to lift him from the car to the stroller and back and I carried him some too. He's just too big for an umbrella stroller..it just won't turn exactly right with that much weight in it..I mean, he IS 4 afterall! And you should have seen the looks we got with him in a stroller in the first place...geez..I think we would have had less looks had he been in an actual wheelchair. It was this "why in the world is that 6 year old in a stroller?" look. Dalton's tall and solid..so he looks older than what he is. He was in good spirits, but WOULD NOT put weight on that leg. Then the funniest thing happened....we stopped at a convenience store to top off fuel and they had a huge buffet of all kinds of food..well my dad said "Look Dalton, they have chicken!" You know how Dalton loves chicken! He stood up from the stroller by holding onto the counter...then he held onto it and took a few steps. Then it was back to the stroller..we got to Charleston and in the room and he got out and limped around some but he was walking so we were so glad! Sunday we only had a couple of hours to ride around before meeting my friend Jen and her two boys for supper. We rode down to the Battery, saw Rainbow Row, and just rode around a little. Met Jen for supper at Ryan's..had a great time, and the kids loved seeing each other again. They talked and Hunter and Andrew acted like best buds. SO cute! Dalton and Ethan played with Batman and Robin figures that Ethan had brought. After supper we went back to our hotel and settled in for the night. Dalton did fine and had no pain that evening.

Monday we had nothing but time on our hands so we struck out just riding all over...we went to Folly Beach, the historic Old Jail (that is supposedly very haunted..), visited the Angel Oak, got out at the Market, and just rode all over and got out wherever we wanted to. Dalton rode in the stroller most of the day just because we asked him too..not because he necessarily needed to. We just didn't want him getting into any pain that evening.

The appointment was this afternoon and prior to the appoitnment we rode out to Sullivan's Island and the Isle of Palms. Nice ride, let the boys see the lighthouse.

Appointment details...Super nice lady..very friendly and Dalton seemed to like her a lot. She had him walk down the hall and back and OF COURSE he hardly limps at all for her...not sure if he was forcing himself not too or if he just wasn't needing to limp at the time...She had looked at his xrays from Greenville prior to coming in the room..She checked his ROM (range of motion) and said that it wasn't as bad as she expected based on how the xrays looked. She said that Dalton is at about 45% on that hip as far as rotating it inward/outward and that she doesn't typically brace or anything until it gets as bad as 35-30%. She said that she will do either braces or night traction if it gets to that point. She said that the two main areas of concern with Perthes is pain management and keeping ROM in the hip. For now we have to do Motrin 3xs a day until we see her again in 2 months (March 17th to be exact). If the limp improves then we can back off the lunchtime dosage. As of right now he is on "no activity"..no running, climbing, or especially jumping. She said that if he has two good days in a row that he does not limp that we can try to let him run a little...if the limp returns then we back off again. I sort of think of explaining it in the way that you introduce baby food to an infant in this day and age..You start slow, seeing if there is a reaction before you add in any more food...so basically that's it with him..if we have two good days of no limping then we can let him run around a little...if the limp doesn't return today or the next or the next or the next then we can maybe let him climb a little (not that he does a lot of climbing per se..but she's meaning even like climbing up on the counter top or a high bed) if the limp returns then we back off of the climbing activity. The jumping won't return until much later. She wrote us orders for a wheelchair..just to have for a day like we had on Sunday. He wouldn't even walk to the bathroom that morning and Joey had already left for church and it was just an awful struggle. She also said that he could have lots of days that he's in a lot of pain. She said if he had several days that he was in bad pain and not walking then we call her. When he goes back on 3/17 they will do more xrays and check his ROM again. We will hope for an improvement in both areas...if not she could very well brace or cast him (or even night traction) at that time. We also have to do a very simple stretching exercise 4 times a day for one to one and a half minutes. He basically tries to do a split...he stands with his feet apart and goes a little further apart, a little further, etc til he can't go any further..once he gets where he can't go anymore then we hold it for the minute to minute and a 1/2. She said she wanted to try that before she does any PT (physical therapy). She said that sometimes she has seen good results with that stretching exercise instead of us wasting an afternoon in PT. She wants him swimming so I have got to get on the stick about that too.

So that's pretty much everything.

You know...it's really the answers we were looking for but in a way I am still not happy with it. Now it's a whole new ball game. Do you know how many times we've said "Don't run!!" tonight???? I guess it will just take time for us all to adjust to it. Now I have to think about things as simple as our Mom's Group at church...we meet at a park weekly (well we haven't over Christmas..but we're getting back up again)...I hate to just not go, but at the same time, there is no way I can do that to Dalton..tell him he has to just sit there while the other kids are running and playing. I just pray that this time is swift and that improvement will be seen at the next visit so that he might can be lifted of some of those activity restrictions.

As usual, thanks for all the prayers, cards, phone calls, txts, encouragement, and emails we've received. We are thankful for having such a loving group of family and friends.

I took lots of good pics...I am just too tired tonight to fool with uploading them to blogger. I will get them posted tomorrow sometime, I promise!

PS: Just thought of two more things...One thing she said that she thought was what caused him the pain was a piece of that hip bone breaking away..she said as it tears down that it fragments and that is most likely what happened. Nice. Also when I was telling Joey about "if he has two or three good days of no limping then we can let him run a little" he said "when has he even gone one day without limping?" So it's a little disheartening. I just hope we aren't in this for the long haul.


  1. ((((Lori)))) I will continue to pray for you guys.

  2. Something else that makes a difference is change in the weather--that always made my son be in more pain (when it started getting cold, for instance). Our doctors said the same as yours, if you have a really active day one day, then have a very laid back day with little activity. My son's ROM was always really good, so that was a plus for us. Try to get him swimming if you can, it will help burn off that energy.

    Is he starting kindie next year? If so, ask them about a 504 plan. That will hopefully set you up for things like adaptive PE. We didn't have that at our school in MN, but we did in NY, and it made a world of difference. My son didn't have to sit on the sidelines anymore, he had the adaptive PE teacher working side by side with him to either modify activities (walk to a base instead of running after batting) or doing something like playing catch if he couldn't participate at all.

    I hear you on the stroller thing! We used one for a 6 and 7 year old! Whenever we got strange looks, we'd say something like "how's that hip doing buddy?" I started to really not care what people thought because his comfort was more important. We never got a wheelchair because I guess our doctors didn't think he needed one. We also tried to get a handicapped parking permit and both his doctors (one at Shriners, one at the children's hospital) said he didn't qualify, so that was kind of a drag. I have heard of kids with Perthes who have gotten one though, I think it really depends on the state you are in. Ours said it had to be life threatening to walk a distance.

    Anyway...good luck! I really feel for you in the early stages of this thing. Does your son like origami? Mine started folding every piece of paper in sight, hee hee. We got through it without even doing a gameboy or anything like that. Whew!

    Did they give you stretching exercises? Ask them for some, or else for physical therapy. That will really help with ROM.

  3. Still thinking of and praying for you guys! Hope you know what a blessing YOU are to Dalton Lori!

    Jeremiah 29:11