First day on a two wheeler! (and no training wheels!)

We took Simon's training wheels off his bike today and he was riding it alone within minutes around the track! We pretty much knew he could as he has been on a balance bike for over a year. However, he is so little for his age, he really can barely put his feet on the ground to stop.... so we are still working on that one. We were going to wait a few months to take them off to give him "bike therapy" of just pedalling around, but at a family outing yesterday he went 90 miles an hour trying to keep up with his older brother and cousin and I thought he was going to tip over for sure and break an arm - or worse! So I thought - those training wheels are coming off - now! He is very proud of himself, and his big brother Sebastian was a great help in cheering him on and "pretending" to race him around the track. I will have to bring the video camera the next trip to the track.

He is of course still limping. A bit more today and I think it is the bike riding. I think I'll email his MD to see if this is adversely affecting his hip joint or if the ROM is just causing inflammation, but helping him in the long run keep his ROM. He is happy, so I'm not over ly worried. But don't want to jeapordize his hip recovery at all!

Our main issue right now is actually his eczema and itching - which is causing him to wake at night. This can be a seasonal thing, but we are always taken off guard on what to do when it flares - maybe once or twice a year. We always have to reassess - are we using the right soap? shampoo? laundry detergent? dish wash detergent? EVERYTHING! Our house is already de-chlorinated and that helps. But he has been swimming more for therapy, so that could also be the culprit. Hard to know. We are going to try him on daily zyrtec - which is for allergies and see if it helps him. But those meds usually just make him over hyper - something we don't need! So we will try it for a week and see what happens.

Alitte stiff after a very active week...

Well Simon is really enjoying his cast free freedom.... and so are we as a family. But maybe alittle too much! Together with the wonderful weather have been many opportunities to be very active outdoors and we have! We put the training wheels on Simon's two wheeler (which we had taken off because he can practically ride it if he were only alittle taller he could stop and get off it). We've read it's great exercise with Perthes to ride a bike. He is thrilled and has been riding 100 miles an hour everywhere. Then he started limping a few days ago. Oops, maybe a bit too much riding. But we don't know if this is really a bad thing (his hip is working, moving in the socket... that is suppose to be good!). But we backed off a wee bit the last few days and his limp is almost not noticeable. He is now able to run which he couldn't do the first 10 days post cast. So that's another workout for the hip. We are just hoping that this is all good and will result in a good outcome, despite the limping. We have been told that the limping is due to inflammation usually and from over exertion - not necessarily that the disease is going south...
So we wait and see. Looking forward to the June 6th appointment for a teeny piece of any information to think things are going well. In the meantime we are enjoying the good pre-summer weather to the MAX and making the most out of everyday and having FUN!

Enjoying our cast free days

It's about 11 days since Simon's casts were removed and you would almost not notice a limp if you didn't know him. It's amazing how each day he gets stronger... much to our relief. He can do the stairs now, but slower than normal (which is usually dangerously fast anyway.... so this is good.. ha!)

We've decided to try and enjoy our summer and not be over obsessed with what's to come with the next few sets of x-rays. What will be will be. We will do the swimming and all the "allowable " activities (staying away for the impact ones) and hope for the best. We are going to try to live our summer as "normal" as possible. Yeah, I'm excited. If the Fall brings bad news, we'll deal with it then. But we are going to think positive here.

In line with this we did an impromptu trip to the beach yesterday and had a blast! Our old thinking would have been.... oh, Simon's legs may be too weak to walk in the sand, it may cause pain... but then I thought I could always carry him, right?. He could still enjoy the ocean view and build sand castles! And that we did! And flew kites! And he was amazing in handling the sand and didn't complain at all. Both boys were so excited to go to the beach (we've only been once since Simon was born) they were ecstatic! It was so fun to see. It really made our weekend.

Review of our Petrie Cast Experience

Even though the casts are now off, I wanted to share some of the things we experienced for those who are interested! And before I can happily forget the whole experience!

Like I mentioned before, the casts were a surprise to us the day of our appointment for an arthrogram, so we did not have time to do any research OR preparation (for Simon or the family!) so we really did "wing" it at first.... and really most of the time. We did do some google searches on petrie casts and got a few tips from parents who went through it, but there wasn't a lot out there. So here are some of our thoughts and experiences. Oh, it is important to know that Simon did not have any surgical procedure done before the cast was applied and was given full permission to move freely in the cast. It was just meant to help keep his joint in the socket while he moved and help loosen up his ROM (range of motion). So moving around was a must in order for the cast to do it's job!

1. The first few days.... will be different than the rest of the experience. Simon did not know how to move in the cast and was "stuck" pretty much where we put him. This was especially hard at night because he could not reposition himself so we had to do this for him sometimes every hour because he got uncomfortable (so goodbye sleep to the one on duty!). But after several days he started to move around and within a week or so could flip flop himself all around, including at night to sleep anywhere from on his stomach, back, or side, and back again. This was a life saver!





2. Moving around.... at first was scary for us as parents. It looked quite dangerous and if he had a fall he could hit his head or break an arm because he would have no way to brace his fall. I even wondered if he should be wearing a helmut! We were ultra cautious at first and followed right behind him most of the time he was up and around. By the last week though after NO injuries, we started to relax and he roamed freely around the house. These kids CAN get onto furniture , chairs, and attempt stairs, so you do have to know where they are at all times! The younger they are, the more their judgement is going to be way off the mark! Simon was super active in his cast and could practically run in them and loved to "crab" walk 90 miles an hour! The last few days of his cast he started doing this handstand on the couch.... I guess it was fun and he was getting bored!




3. Sleeping and night time.... ok this is a big one and I could probably write a book - not with expert advise, but with stories of frustration and trial and error to get it right! Our biggest problem at night was the itching inside the cast. That may not be an issue for all kids. Simon had eczema as a baby/toddler and has always been a chronic skin itcher.... so he was definately prone to having this problem. We tried benedryl at first, but after a night or two, that did not stop the itching. We then got a prescription - Atarax- from his doctor and that worked well for several days, then started to wear off in it's effectiveness too. What worked more in the end was getting the environment right. This is what worked best:

* He slept on a futon mattress on the floor with Mom in the livingroom. He felt better knowing I was right there and if he woke up and saw me, he was more likely to go back to sleep than if I was sleeping away from him or on another bed. He had pillows all around him to support his leg as he flip flopped around (see picture below)
* We used an ice pack (the soft kind that has gel inside) and he put it on his body to cool down. The hotter he felt, the more he itched - so the ice pack worked well. Also, I had to be sure NOT to cuddle with him! This was hard especially if he was yelling out from the itching! But if I did, he would get hot and MORE itchy, and once he got itchy and started yelling - it took a long time to get things turned around. No cuddling! booooo.
* We had a fan on high (I was freezing, it felt like I was in the arctic) and the cable TV "toddler tunes" channel turned on for background music
* We found it worked best for us to keep him busy and active about an hour past his usual bed time, then get him laying down as quick as possible and tell stories to distract him. We initially had him watch TV to fall asleep because it did help distract him from the awful itching, but sometimes it would just zone him out and make him realize how much he itched, so the other plan actually worked best in the end.





4. Clothes.... who would have thought this would be so complicated? The bar that is cemented between the legs prevents any clothing from being pulled up - including underwear! Simon did wear a diaper for 2 days though he had been potty trained almost a year already. Then he wanted the diaper OFF! So we cut the underwear on the sides and added snaps. It worked, but was kind of a pain. We lucked out with the clothes as Simon could still wear a 3T or even squeeze into a 2T so we were able to go out and buy overall shorts that snapped in the crotch area and they worked perfect. I will be doing some research on how to find these and how big they go up to. I've talked to parents who have had to cut and velcro or put snaps into their own clothes. May be worth having it done by a seamstress if you don't sew and will hold up a lot longer. That's what I will do if we have to do this again and he's outgrown the 3T's.

5. Baths.... sponge baths that is.... we didn't get an A+ for this one. We read a lot how parents would bathe their kids and wash their hair everyday they were in the cast. How they did this I don't know! I was half asleep most of the time and it took a lot of effort to get him bathed (not to mention he did not care if he bathed or not and we practically had to force or bribe him...). We ended up doing it at the kitchen sink. He stood on a wide dining room table chair turned backwards in front of the sink. I wrapped his legs in saran wrap. He would play in the water and make a mess while we quickly washed him down and did a quick hair wash when he'd cooperate putting his head in the sink. We finally did get his hair cut really short the last week in the cast to help with hair washing as well as to cool him down some due to the itching.




6. Transportation... seemed tricky at first, but it wasn't bad. We may have had it easy because Simon is so small. He was able to fit into his brother's booster seat. For a bigger child, we read the booster needs to have arms that retract back to accommodate the leg spread, and ours did that too. We did get a wheelchair with leg extenders the first day. He loved wheeling around in it. But it was alittle bulky carting that thing around to stores and such. We ended up using the red wagon we had to go everywhere and it worked great. I put some heavy beach towels down to make it softer and it fit pretty easy in the back of our minivan. Also, I had control of the wagon, where with the wheelchair he was always getting away from me!!






7. Carrying him around... was definately difficult - and he only weighs 32 pounds (without the casts). We read that you should never lift a child under the arms (like you usually do) because the weight of the casts put too much pressure on their hips. So you have to pick them up in a chair position or like you are cradling a baby. They are really dead weight this way and it is a strain. We tried to avoid lifting him after he could walk around unless we had to to save our backs..... but it was definately necessary part of the time. Also, you are not suppose to lift the legs up by the bar as it can break or come out (and ours did once and we had to glue it back in!)

8. Cast damage... is to be expected! Simon pulled out most of the "cotton padding" out of the top 1 1/2 inches of his cast the first 2 days! Who would have thought to put fun looking "fluffy" cotton like padding in a small child's cast! ha! He then started picking at the top of the cast which made the edges sharp. Of course he then cut his skin one day on it. We went back to the cast room a few times in the 3 1/2 weeks he had the cast on for minor repairs. They were really friendly and said these things happen all the time with small kids and they are always repairing casts. The put mole skin around the top of the cast to make the edges soft, then put the fiberglass casting material over it so he wouldn't peel it off (and he would have!)

9. Last but not least expect bad behavior and crankiness..... At first everyone is understanding of this... you feel bad for what they are going through and they are experiencing pain and frustration.....but after awhile it starts to wear on you! Their schedule is off - everything from no school or playdates, eating whenever and whatever, sleeping is off (if they are even getting much!). Kids thrive on routine and expectations and all of this is WAY off when casts are thrown on unexpectedly! We did our best and got alittle stricter towards the end of the 3 1/2 weeks and started setting more limits and following family rules alittle closer to the norm than at first. We thought he needed to start getting into a routine for his own sanity as well as ours! After the casts came off, things didn't return to normal right away either! He needed to get use to sleeping in his own bed again, and we didn't want him eating in the livingroom watching dragon tales any longer (but this is SO fun mom!) amoungst many other things. After about a week, things are feeling much more on track - whew!

Getting stronger each day

Just a quick update on Simon's gait and strength since he got his petrie casts off one week ago. He is definately getting stronger and limping alittle less each day. He cannot run yet, but he is trying to gallop. At least he wants to try.... which is an improvement! I heard back from his Ortho doctor today after I emailed my concerns that he was still so stiff. He said this was completely normal and it could take one to two months to get his strength and mobility back to where it was. So I felt alittle better knowing that!

Still focusing on activities that will improve his strength and ROM such as swimming, biking, and just plain running around. We will talk with our doctor on June 7th about starting more structured exercises. In the meantime he has slept through the night 3 nights now. Yippee! Hope I didn't just jinx myself.....

Casts off! But still weak....

Simon's casts were taken off earlier than we expected ( 5 days earlier) because he was sleeping so poorly and the doctor did not think the 5 extra days would make a difference. We were so excited! What we didn't expect was that he wouldn't be able to walk at first..... or even very well for several days. The doctor said his knee muscles were deconditioned and it would take "a few days" to strengthen them. This is day 5 and he is still having problems so we aren't sure if he is on track or lagging alittle. He seems to be stronger every day, but he cannot go up or down stairs or do anything that requires he bend his knees to lean down. I will probably be emailing his doctor soon. We haven't been slated to do any physical therapy, so I will ask about that as well, although I have a hard time imagining him cooperating with it.

We are working on getting back into routine - which is NOT EASY! After sleeping with mom for almost 4 weeks - being back in his own bed just isn't very fun. I'm not up to just letting him cry it out in his bed either, as I'm still feeling alittle sorry for him as he is still struggling all day as he gets around and I can see he is in alittle pain. But after 5 more nights of still not sleeping a full night, I found myself bribing him as he went to bed tonight that if he slept all night without crying for me he would go up the reward ladder (a system we have for good behavior) and get the $1 at the top and can go buy gum! Yippee. Lets see if he bites on that one.... probably not. Desperate times calls for desperate measures. ha!

Kids are so adaptable.... One more week in casts!

Here is Simon at the schoolyard a few days ago. He thinks he can do anything - even with the casts on. Nothing slows him down!

It's been awhile since I've posted.... mainly because it takes almost every waking second to care for a child in bilateral casts! Even in the night hours! The prescription medicine for itching and sleep works pretty good, but not every night. I think by the time this thing comes off, we will have the routine perfected! If we keep him busy and active until around 9:30pm, then turn out the lights and say it's night time (and lay with him of course....) he falls asleep pretty quick. Our mistake before was letting him watch TV in hopes he'd fall asleep and not think about the itching - when actually just sitting there REMINDED him about the itching. So now he plays until he drops and for 2 nights we have not had any yelling and crying for hours about the itching. Six more nights to go....

Daytime hours have gotten easier and we don't feel compelled to follow him around every waking minute to make sure he doesn't fall backwards onto his head. He only has fallen once forward and scraped his nose when he was crab walking 90 miles an hour yesterday when his cousins were visiting. He even insists on "spring boarding" himself onto the couch instead of having someone help him up.

We've had a few trips now to the cast room for "repairs". Tonight the bar came detached and we panicked for a moment as his legs could move freely (and he loved it!). But I finally called the cast room and they said to glue it back in and it worked! (hot glue gun) for now at least....

Next Monday is the big day for the casts to come off! Yippee. We are very excited about that, however we will also find out more about where he is in the progression of the disease and the doctors thoughts on whether to brace him, or need for possible surgery in the future.