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!

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!

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.

I'm debating on calling Dalton's ped ortho in Greenville to make an appointment for early next week. Sunday he had that awful spasm at lunch and then his leg was sore and he was stiff on it...Sunday evening he had two bad spasms that he cried out with. I know the dr said to expect pain, but this is not exactly the impression I had of the pain. I was thinking aching pain, sore when walking, but screaming out is not what I took him to mean. Granted, he's not school age (and we homeschool anyway...) but I'm to a point where I am afraid to leave him in Awana, Sunday School, or choir by himself. It would absolutely scare his teachers to death if he had one of those spasms. The screaming is just horrible. He shakes all over and breaks out in a cold sweat with them! So I know they are bad...Dalton's a tough boy..it takes a good bit of pain to make him cry, so for him to be literally screaming is pretty bad.

I think I will call and get an appointment, if nothing else for peace of mind. Gah, and speaking of peace of mind...Sunday I googled "perthes and leg spasms" well one of the first articles I pulled up was this one. So I am frantically digging out copies of his blood work and finally found the answers I was looking for. His white blood count (wbc) was high by the standards set by the hospital, but as I dug further and further online I found out based on age what is a normal wbc and Dalton was WELL within normal range!! (For the record, a 4 year old can have wbc as high as 15.5 (thousand) and be totally NORMAL! and Dalton's was only 12 something and he was at the dr for croup too!) WHEW! I was one sick feeling Mama for a short time Sunday. I kept saying to Joey that "surely they wouldn't have missed something....surely". It did make me feel better to see that the article was from Germany in 1983 which we know medicine has come a long way since then. But still...ugh...shiver!!

Jinx

I have jinxed him...This morning at church I had several people come and ask how Dalton was doing and I told them that "oh he's had a good couple of days!" lol..well it stopped today.

We were sitting at the table having lunch and all of a sudden he goes to screaming, just blood curling screaming, he frantically gets out of his chair, then falls because he can't put weight on the leg and it took forever to calm him down. Now his leg hurts and he doesn't want to move. He needs a nap so I gave him a little ben@dryl to calm him down and hopefully help him get a good nap this afternoon. Poor little guy.

As much as I hate to do it, I guess I will start him on that medicine the ped prescribed for him tonight. Wish us luck.

Dalton's been in a pretty good bit of pain today. This morning first thing he got up saying that his leg hurt and he would cry and his knee would sort of buckle when he tried to put weight on it. He had this cough that kept us up all night and even with two nebulizer treatments and a prescription cough medicine he ended up throwing up...all in our bed...so this morning (after he finally slept from about 4:30am until about 8:30am) he woke up coughing so I took him to the ped. She said his lungs sounded clear so to just treat the cough...but she noticed how badly he was limping and asked about his pain level and everything. She wrote him a presciption for Clonidine and said that it would help him rest and would help his leg not to spasm at night. I pulled the patient info flyer out of the bag from the pharmacy and the only thing that it said it was for was to treat high blood pressure...so I called the pharmacy and they said that they fill the medicine a good bit for children w/ADD or ADHD to help them rest...well the more I have researched it online I am a little nervous about it. In a few instances it talks about an unsafe lowering of blood pressure and heart rate....to the extremes of death in a few children. I am just a little nervous when it comes to medication. Does anyone have any experience with this medicine IN CHILDREN? I would like to at least talk to a couple of people before giving it to him. It's only 0.1mg.

Anyway, after we went to the ped we attempted to run in WM to get our groceries...Dalton was extremely uncomfortable in the buggy...he kept crying and trying to get comfortable but couldn't...so we ended up just leaving after getting deoderant, etc (you know, all the stuff on the non-food side of the store). We did a re-attempt this evening with Dalton in the wheel chair and Hunter pushing him. Sigh....It was an experience...that's the only way I know to describe it. I don't know if any of you have dealt with a child that's going on 3 weeks of prednisone..but it's not pleasant. He is SO irritable and just can't seem to control what he's doing..you can be telling him something over and over and he just can't stop or settle down. It's so frustrating...I don't want to spank him if it's truly something he can't help..but on the flip side I'm afraid he's getting just a tad spoiled by us letting some things slide. It's hard to find a good balance. Even now at 11:40pm he's just now starting to settle down to go to sleep. His leg is uncomfortable and he's so tired that he can't hardly stand himself. Poor babe.

One thing that works awesome is that we now have a Wii and he loves the golf game...it basically requires no leg moving but is good for upper body, as is the boxing game, and several others. We've talked about getting one for a while but went ahead and got one just so he would have something he could do since he can't run around and play. I think it's going to be a great investment, something we can all enjoy as well. LOL We were rocking the house to Disney Sing It earlier. lol I'm sure we were a sight! I can break it down with some Hannah Montanna. hahahaha

So that's the update on us...not much going on...just praying that today was an off day and that it's not starting to be the norm for us.

No pain last night

I'm feeling hopeful...but honestly he will sometimes skip a night or two or three w/out pain so I'm not sure yet if that was just one of those nights or if the added Tylenol and the heat wrap did the trick. Time will tell I guess.