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.

Tuesday, January 27, 2009

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!!

Sunday, January 25, 2009

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.

Wednesday, January 21, 2009

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.

Tuesday, January 20, 2009

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.

Monday, January 19, 2009

Oh...

and Dalton is back on prednisone again for that stupid poison oak that he can't get rid of. This will make the 3rd round of prednisone he's been on since 12/27!

He's been asleep for about 20 minutes..and so far so good with this pain level. He got his meds and we did the towel thing so we will see how it goes.....

More dr's instructions

Called Dalton's dr (the one in Greenville) because the past several nights he's been waking up in a lot of pain during the night...They want me to give him both Motrin and Tylenol at night as well as apply moist heat. They said to wet a towl, ring it out..put it in the microwave and get it hot..put it in a trashbag and tie it up, then place that down in a pillowcase and wrap his leg in it at bedtime. If after 3 or 4 days, if no improvement they want to see him.

Saturday, January 17, 2009

Great article on LCPD

For your reading pleasure...

LCPD ARTICLE

Thursday, January 15, 2009

One more thing...

Make sure to scroll down because I just did a blog post that included pics of our Charleston trip...

One other thing that we are trying to decide is which ped ortho to see. If they were both in Greenville we would see Dr. Hooker (the one from MUSC). We like them both and I think that they both have the same objective in mind. They both said to do the motrin, both said that they would cast/brace if it got worse, etc...here's the main thing between the two dr's.

Beckish in Greenville said to let Dalton guide us...let him do what he wants and know that pain will be there if he does too much. He also didn't recommend any stretching or anything like that. He said no on the wheelchair because of dependency issues.

Hooker @ MUSC said for US to guide Dalton. That he should NOT be running, jumping, climbing as long as he's limping...if no limp then we can allow him to do a little. She said yes on the wheelchair to make it easier for days he's in pain or limping a lot.

So for that little of a difference is it worth the drive to Charleston, the cost of gas, hotel, food...etc?

What we are trying to decide is do we just see Dr. Beckish again on 3/30 (his appt at MUSC is 3/17) and tell him that we are doing a stretching exercise and to let him know that we are choosing to limit D's activities because we are seeing an increase in pain and limping if he's too active.

I know everyone will have thoughts and opinions on this...do you mind sharing? We are leaning towards Greenville since it's closer..I mean, ultimately Dalton is 4..he IS going to run, jump, and climb at times. I can't physically have my eyes on him 24/7. I am trying my best, and so is Joey in the evenings to keep his activity down. I mean, it's not like I think the dr in Gville is going to be mad and dismiss us because we are doing a stretching exercise and because we are not allowing Dalton to run, jump, climb.

Anyway, it's confusing and it would be helpful to have a couple of thoughts from some of you guys to make sure we are thinking this through correctly...
Thanks!!

Make sure to scroll down for pics!

Rollin rollin rollin...lol

Lil D got him a wheelchair today compliments of our good friend Kari.



I wasn't going to say anything here on Dalton's blog about this because I just didn't feel like it was appropriate for here..but yesterday was just a real struggle...but now that everything has worked out I will share just what God has done. I think we are like most people we know....we make our bills..but it's tight sometimes. Well the place that rents out wheelchairs called yesterday morning to say that they were getting with our insurance company, blah blah blah and were bringing Dalton out a wheelchair later in the day. Yay...well not long after that the insurance company called me to say that a request has to be submitted to them and it takes a 30 day turn around time to have the request approved/denied. (Seriously...if he couldn't walk at all we'd have to wait at least 30 days???) Bull! Then she goes on to tell me that OUT OF POCKET we'd have to pay $400 up front and then our insurance would kick in and would pay 80% of the rental fee per month on the wheel chair...our 20% would still be $45/month! We *might* could swing the $45 a month (if we don't eat...LOL) but no way could we pay the $400 up front right now. So by this point I was bawling not knowing what to do...talked to Joey..he said to tell them just not to bring it..we'd just have to figure out something else. I was really feeling discouraged...Thank God for good friends and our family. We have so many that are praying for us and checking on us, encouraging us. My friend Shelley came over yesterday afternoon to visit...we had talked ealier in the day and she just felt the need to come and visit. She even rocked Dalton to sleep for me so we could just sit and talk. I really had absolutely no desire to go to church last night...when I get in a mood like I've been in I just want to be home and not subject myself to having to be around people. About 6:10 I thought...if Shelley can drop everything and come here to visit me to encourage me then I am going to make an effort and take the boys and go to Awana. So I did.

I had gone to check on Dalton and on my way back to the class that I help in my friend Kari stopped me in the hallway to ask about Dalton and I was telling her about the struggle we had gone through about getting him a wheelchair. She immediately knew of a solution....her daughter Katelyn had surgery on her leg 2 years ago and she was pretty sure she could get a hold of the wheelchair that she had used and bring it to us. Last night I just prayed that something would work out for us. Sure enough this morning she sent me a txt that she could get the wheelchair and was bringing it to us TODAY!!! She brought it over just around 3pm.

I also found out today that a local church had a special prayer just for our Dalton this past Sunday. It just means so much to us..I know I say that a lot but I truly mean it. Words can't express how greatful we are for the prayers, love, financial support, and acts of kindness that have been shown to us. We just hope that one day we can pay it forward to someone else in need.

lol...Now if you can believe this...as much that has seemed to happen to us lately..would you believe that Hunter and I both came down with a virus last night/this morning?? Hunter had been fine all day (Shelley can definetly attest to that! lol) and then during Awana while I was talking to Kari his leader came out and said that Hunter wanted me...I went in to see what was up and he said his head hurt...well long story short he started to throw up once we got home and it went on about every half an hour during the night and then low and behold I got sick early this morning and felt pretty yuck until about 2pm today. One thing I can say is that this virus was a very mild one in comparison to some that we have had. Now the wait begins to see when and if Dalton will come down with it. Blah!

As far as things with Dalton's pain and limping...he hasn't limped too much yesterday or today, though he cried a little last night with his leg and this evening he has limped some...which goes to show that the more he's on it, the worse it is in the evening for him. It really makes sense that the less he uses it for active play that the longer it's going to take for it to repair itself. I'm concerned because he's put on a little weight..he's gained about 5 pounds in the past 3 weeks or so...Now granted, he went through back to back rounds of prednisone (for the croup and then poison oak) which just increased his appetite..He went from weighing about 55lbs to weighing 60lbs at MUSC on Tuesday. In an adult 5lbs isn't a big deal, but in a kid it makes a huge difference!! A big part of this is that he just physically can't run and burn off the calories like he once could. I'm not sure what to do about this. We have another dear friend from church working to see about getting Dalton into the community pool, but if this doesn't work out then I am going to have no choice but to get us a YMCA membership. During the summer we have pool access but this time of year we just don't. I know the wheelchair will give him a good upper body workout..just not sure if that will help his waist or not..lol Not sure about a Wii or something that would have him up and moving...we don't have one but had talked about maybe trying to get one if it got to a point that Dalton couldn't be active. Obviously swimming is going to be the best thing, so please just keep that on your prayer radar that something will work out for the swimming aspect of it. We would love to be able to do the swimming at the closer community pool..but they have stopped allowing anyone other than residents of that community into the pool. It's possible that if they do allow us to swim that they might only approve it for Dalton and not for Hunter. Hunter's already feeling just a tad left out and I know it would kill him to have to sit and watch Dalton in the pool..because even though it is good for Dalton and he needs it...he'll still have fun doing it.

Lastly, here are a few pics that we took on our trip to MUSC!

Me and the boys at the Battery



Dalton on a cannon...lol (that's my dad there with him)



Rainbow Row...ahhh, lovely isn't it?



Me, my friend Jen, Hunter, Dalton, Andrew, and Ethan



The Angel Oak




Folly Beach

Tuesday, January 13, 2009

Update

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.

Update from Lori

Allison here again....

Checked range of motion - better than she expected based on xrays. Definitely needs to be limited on activity. Main thing she wants is him not to limp. Once limping has stopped let him run and climb. As we let him play and run if he limps again we back off. No jumping until it is completely better. Wants him on motrin regimen 3 times a day. As limping gets better we can take out one dose of motrin. She showed us an exercise we can do to help his range of motion. Do this 3 or 4 times a day. Range of motion in right leg is 45%. When it gets to 35% is when she considers traction or casting. The pain he had the other night she said could have been that a piece of bone fragmented in the hip.

Wrote him a prescription for a wheel chair. But only use it as needed. She said his age is on his side. 90% chance he will do fine with his hip. Goal is to do day to day activity without limping.

She will see him again in 2 months on March 17th. Will do more xrays and see how everything is looking at that point. Will also check range of motion as well.

I'm sure Lori will post an update as soon as they get home tonight.

Monday, January 12, 2009

The Trip Down to Charleston

This is Allison here guest blogging for Lori....

The trip down was tough. Dalton could not put any weight on his leg so it was having to lift him to put him in the stroller etc, every time we stopped. We got here @ 2. Checked in and rode over new bridge. Went to the Battery and saw all the beautiful homes on Rainbow Row. We met Jen, Ethan and Andrew @ Ryans. We had a great time....Dalton startd walking again mid afternoon and by supper we were having to remind him to slow down..not jump etc. We are heading out now for Angel Oak and Folly and to go back to Market, Battry and Rainbow Row since we have all day to do nothing. Dalton is limping this morning, but is able to walk.

Saturday, January 10, 2009

Awful time with Dalton tonight....ugh

We were getting ready to go to bed and he got on the couch and all of a sudden he started screaming...I mean screaming...I picked him up and his leg was in this knee upward sort of position and he was screaming and had a hold of my shirt just gripping it. Huge tears were rolling down his cheeks and he was screaming...it was horrible. Hunter started to run to the bedroom to get Joey, who was taking out his contacts, and Joey met him in the hall..he was coming to see what was going on. Dalton would not go to Joey..was terrified to move, still just bawling. Joey finally picked him up and carried him to our bedroom and sat him on the bed. He was still carrying on something awful...saying that it hurts and it popped. At this point Hunter looked at me and his face was all red and he started sobbing. It's so hard for him to see Dalton hurting like that. I ran to the kitchen and got him some motrin...not sure if it really would help or not...but I gave him some and at that point Joey started getting out clothes and said he guessed we would just have to take him to the hospital..we didn't know what else to do with him. My heart just sank..it was so awful seeing him hurting but not knowing what to do to make it stop. Then it got to a point where I think it had really stopped hurting but he was scared to move it for fear it would hurt. I asked him if he wanted to get in the big tub (the jacuzzi in our bathroom) and he did...so I got him laid back and got his boxers off and then he said he thought he could move his "weg"..and he did. Now he's fine again...like it never happened. Hunter is completely traumatized by the whole thing. It's just gotten so much worse in the past week, especially at night. During the day at times he'll run and play like it's nobody's business but then he pays for it. I am so afraid of what is going to happen because it absolutely is gutwrenching to see him hurting like he did tonight. He's on the couch trying to go to sleep now...We are packing the stroller so he's going to have to ride in it while we do stuff in Charleston..I just can't chance him hurting like that. I feel like at this point staying off of that leg some might be the best thing for us. Please pray for us...tonight was so scary.

Friday, January 9, 2009

Travel Plans Confirmed

We are definetly leaving for Charleston on Sunday morning. I will update my blog from my cell phone at some point when I can. The hospital can get you good rates on 4 area hotels so we will be staying at a Best Western in downtown Charleston. My parents insisted they would pay for one of the nights stay. We are meeting up with my friend Jennifer..We met online on our preeclampsia board and are great buds. We plan on meeting her and her husband and two little boys (who are Hunter and Dalton's age) for supper on Sunday night. : )

Joey found out today that they are going to have mandatory layoffs in the office area now..it will be cycle layoffs, like one week at a time...but still it just seems like here lately everywhere we turn we are being hit by one trying obstacle after another. I know it's gonna be ok. I just keep telling myself as long as we are all healthy, happy, and together then the rest just doesn't matter.

Anyway, wish us luck at the appointment. I'll touch base as soon as I can.

Love you all!

Thursday, January 8, 2009

Lord help me....lol

My patience is surely being tested today. On top of the leg stuff and the poison oak, Dalton had a cold last week and he's at that stage where he coughs when he lays down..you know that cough that you just cough and cough and cough. Yeah...well the prednisone has apparently made him WILD and *SO* *SO* irritable! He has screamed and cried at everything today...it has been misery for me and Hunter. I gave him Ben@dryl and got him to sleep only for him to wake up within 15 minutes from the coughing. AHHHHHHHHHHHHHHHHHHH!

I am still in my pajamas...which isn't different than most days...lol but today I have not had any time to do anything for myself. Granted instead of blogging I could be dressing......LOL

Sigh, anyway.....There is a light at the end of the tunnel..I know it's there. I just don't see it yet.

Today I keep singing (badly, of course) "even when the rain falls, even when the flood starts rising, even when the storm comes...I am washed by the water." I know there is a reason behind everything, even if it can't be seen..and I know we are in His care and will be ok.

Wednesday, January 7, 2009

This evening on top of being miserable with poison oak, Dalton's also having pain in his hip...not sure if it's spasms or what..it's hard to get out of him how it hurts. He almost acts like it's cramping in his thigh. So this evening he's had orapred, benadryl, and I've just now given him motrin. Oddly enough, he's really not been overly active on that leg today bc it's been cold, rainy, and windy...so he's been inside all day.

Anyway, now my dad is wanting to go with my mom and me and the boys to Charleston so now we are talking about possibly leaving on Sunday morning and making a mini-field trip out of it for the boys...We aren't looking to spend any money so I've planned on seeing Rainbow Row, the Angel Oak, Folly Beach, and a few free things like that. I can remember seeing the Angel Oak when I was a little girl...maybe 10 or 11 and I can't wait for the boys to see it! I think it will be nice to have a day or two of just relaxing and enjoying our time there given the way things have been so hectic the past week or so.

I think I'll try to do a little history lesson tomorrow and Friday for Hunter regarding Charleston. We'll look up all these things on the internet and talk about them..and then he'll get to see them in person. He will love that. Dalton is just excited about staying in a hotel. LOL!

Tuesday, January 6, 2009

More x ray pics and Poison Oak

I ended up taking both of the boys to the ped this morning because both of their faces looked pretty yuck. She said it was poison oak...it's on their necks, all in Dalton's head, on their legs, bellies, and backs. I have NO IDEA where they got it. The only thing I can remotely think of was on New Year's Day they played outside at Marie's...they played on a bank sort of and were building a fort with sticks and all..but the only thing is that their cousins, Amber & Elijah, were playing with them and they are fine. So I am so confused...they look awful and I really need to figure out where they got it to keep them from getting back into it. It just makes no sense. Dalton's face looks awful bc he won't stop scratching it. She put them both on prednisone for 6 days and a cream with a steroid in it as well.



After their appointment this morning I ran to Greenville to pic up the x rays that Dalton had made there so that I can take them with me to MUSC. Here they are...


Monday, January 5, 2009

Waiting, wondering...

Today has been a hard day. Not really sure why, but I found myself in tears several times. I am not usually so emotional and it drives me insane when I am this way.

We'll be leaving for Charleston next Monday morning early. I think just me and the boys and my mom are going down. Joey said he'd just stay here and work in case they have to do something later that he's needed for. Should be fine because I am sure he could care less than riding around looking at sights and walking on the beach and all that.

It's funny how things just seem to work out sometimes though. We've been a little concerned about the cost of the trip down, how much it will cost at the appointment, espcially because our deductible won't have been met by the time of this appointment. Well my mom called me today to say that a couple that is friends with my dad gave him $20 and said they wanted to at least help out with gas money. He said nothing about us being concerned...he's just not that way...so apparently our prayers were answered...God laid it on their hearts to give my dad this money. Amazing huh? I know we'll be just fine. The most important thing is getting Dalton to the right doctor and if we are doing the right thing then everything else will just fall into place. I know it will.

It just seems like it's something to worry you all the time though...Dalton had this spot on his chin...if anyone noticed at church he had a bandaid on his chin yesterday morning...well today whatever it is has grown to twice the size...is really, really red and oozing. (yeah, nice.) I am debating on having to take him to the dr with it in the morning. I am pretty sure it's just a "burn" from the trampoline (I know, I know...he shouldn't even be on it...)but just the way it's sort of spread makes me a little worried. In my mind I'm hoping it's not one of those flesh eating things and half of his face will be gone by morning. lol Seriously though, it looks bad and is really painful whatever it is. He's also got a spot under his eye that has scabbed over so I'm almost positive it's a burn from falling..but I don't understand why it's spread on his chin...unless maybe it's a little infected. Anyway, I'm just praying it will look better by morning so we can avoid going to the doctor.

Again, thanks for all the love and support you have sent our way. We continue to be so appreciate of it.

Saturday, January 3, 2009

Thankful

I am so thankful for good friends...So many people checking in on us to see how we are doing, SO many have sent scripture references, which I am finding most helpful. Tonight I had seven good friends from church force me from the house and we went to Los Amigos. We spent 4 glorious hours just laughing and talking. My supper was paid for by one of my friends. I am so blessed to have such great friends. So thanks to my church homies Jennifer, Shelley, Kari, Lynn, Alicia, Mary, and Joanelle. I had a great time tonight!! Love you girls!! : )

There is just such a closeness in our church, it's hard to describe. I have had so many people offering us help, one couple trying to get Dalton into their "community" indoor swimming pool so that Dalton can get the hydrotherapy that he needs without me having to drive to Clemson everyday to the "Y". These are the same people that called, visited, and brought us supper for 13 straight weeks when I was on bedrest due to severe preeclampsia with Hunter, the same ones that hurt with us and did all they could to be there for us when Joey's brother died in April. Just the ones that email or txt me mean so much that you are checking in on Dalton's blog to see what is going on. We just feel so loved. Today has probably been the best day I have had all week. I was in pajamas working on a scrapbook when Jen got a hold of me (and it was almost 5pm).

When I say my prayers I always remember my church family. You all mean so much to us.

Isn't it wonderful to have a great church family?

Friday, January 2, 2009

I've started and re-started this post several times...don't really have much to say. Dalton is about the same, I guess....yesterday he played hard all day and there was a huge difference in his pain and limping last night. We went to Marie's (Joey's mom) for lunch and the kids played outside a big portion of the afternoon and last night he was very stiff and said "ow" a lot. He wanted to be carried and asked for his stroller (which we didn't get out)..we just carried him if we went down the hall or something. This morning he doesn't seem to be in pain, though the limp is still there. Guess that's just something we will deal with for a while, or during the duration of the way this disease course runs.

As for me, I am feeling some better I guess. I think it's just that fear of the unknown that bugs me....as for those that know me well know that I have to be "in the know" and on top of every situation. This is hard for me to just let go and know that some things are wait and see and that some things (like appointments) take time to come around. Part of me will be so glad when the 13th gets here and we can see what this doctor feels is best for Dalton. Then again part of me wants to be oblivious to everything until the 13th comes....allowing Dalton to run and play like we don't know anything is wrong. I'm not sure which is the best approach.

Anyhow, Joey goes back to work on Monday and we will get back into our routine of school and all. We've been out for just over a month and I'm ready to get into our normal routine. Dalton will turn 5 in Aug and we will "officially" start Kindergarten the middle of July with him. We homeschool and I am thankful, especially with what we have going on with Dalton.