Through 9-8-07
While we've not posted for quite some time, things are very good for Miles. He has: started kindergarten; started new after school care; put on five pounds since the surgery; resumed almost all activities including sitting astride the horse at hippotherapy; and acquired a new little brother, Malcolm. The only activity he has left to resume is walking. Miles does not seem to be in any pain and is moving his left leg pretty normally. The difference in leg length is going to require a lift in or on his shoe and we will address that when we get his new ankle orthotics. All in all, Miles has made remarkable progress in the short time since early June.
Annie
Miles with his brother Malcolm.
Through 8-12-07
Miles had a very busy week. He had TWO visits from his new four-legged friend, Isis. He spent a long time trying to say "good dog." He worked very hard at it and got all the vowels and consonants, but not quite in the correct order. Good trying Miles!
The rest of the week was full of therapy even though it was very hot. Miles' regular PT was on vacation, so he had his buddy Ryan work with him. Miles did not work as hard for Ryan as he was supposed to, especially on Friday at the barn.
This week was also full of trips to the pool. At aquatherapy, Miles ran into his friend Zoe on her way to the outdoor pool. Most of our trips are to the neighborhood pool. The water feels nice to all of us.
Miles spent 45 minutes with no complaining in his stander today. It did help that car racing was on! It was very clear that he was working his leg muscles hard standing at about 65 degrees. We'll keep it up and, as he gets stronger, we'll increase the angle until he's upright. Go Miles!
Annie
Big smile.
Miles in his stander!
Through 8-3-07Well, we are through the ninth week and Miles has been allowed to "resume normal activities as he is able." Nice to get that kind of clearance from the doctor! His progress has been good, and he occasionally experiences discomfort rather than pain. He still gets tired out easily, but his eagerness to please means that most therapy sessions are complete ones and he crashes later at home. Favorite activities continue to be the pool; hippotherapy; playing with other kids; and anything to do with animals (dogs, cats, rabbits, etc.). We're going to start having some time in the stander and see if we can't get some weight bearing in that left leg!
Miles also visited a new friend in the hospital this week, Finn. Finn had a similar surgery to Miles and was sporting a blue cast. Miles was a very good visitor while Finn was sleeping and was mostly quiet. He was an even better visitor when Finn woke up. We hope that Finn has gotten to go home by now and that his recovery goes smoothly!
Annie
Miles visiting his new friend Finn.
Until 7-27-07
Two days, two therapies per day, the results are the same.
Annie
Wednesday.
Thursday.
Through 7-22-07
Miles went back to physical therapy this week and he had TWO visits. He did pretty well with the stretching which has never been his favorite activity. It helped that his first visit included Milan the therapy dog. His trunk strength and head control are better than we expected, and his physical therapist was pleasantly surprised. The second PT visit was out at the barn and he was able to get back on his therapy horse, Buddy, though only on his belly. He REALLY enjoyed that (especially after stretching) even more than visiting with Thunder, one of the mini horses. The only thing we need to do is convince his orthopedist to give hippotherapy a try!
The BIG DEAL this past week was Miles' visit from his cousins. They brought their new puppy Chloe who is only seven weeks old. Miles got lots of kisses (from cousins and Chloe), and was pretty tolerant of a nippy puppy, although he did knock her down a couple of times when he was trying to pet her. Miles also enjoyed getting back to the pool with his cousins. Maddie and Emily really enjoyed the trip to the water park. All in all it was a fantastic visit and it helped Miles' rehabilitation quite a bit to have his cousins around.
With the resumption of PT, we've been adding some pain meds back into his schedule. Rather than being in pain, it seems like he's uncomfortable. However, after a day of heavy activity (PT, pool, etc.), we do give him pain meds at night. We think that his little muscles may be cramping a bit as they come back into use!
One more big item of news, Maddie helped Miles lose his second tooth! Her little fingers were much better at grabbing hold of the tooth than Mommy's. So, now he's getting a big gap in the front of his mouth. Thanks Maddie, you are very bold.
Annie
Miles with his cousins Maddie and Emily, their new puppy Chloe, and Daddy.
Puppy time!
Miles, Maddie and Chloe.
Miles with Thunder at physical therapy. Looking good!
Miles gets some horse time on his belly - doctor approved!
Through 7-14-07
Miles seems to be making progress. However, pain management has been tricky. Miles has very few ways of indicating pain, and most of the time it's more that we can recognize the signs rather than him directing the information to us. In some ways, he is suffering more than when he had the cast. His therapists have warned us to make sure that he doesn't associate pain with movement. Fortunately, we don't believe he has, so it shouldn't impede his physical therapy (which we'll resume next week). He is now off the valium, which is good. Miles does not wean well off of valium—we'd rather not go into the details, but it's not pretty. Unlike other children, Miles seems to have more pain in the morning rather than the evening, so, we've been giving him half doses of the Tylenol-3 in the mornings. He does not seem to need more than one or two doses per day. This does not mean that he his pain free. He still does not like being moved from one position to another, but gets comfortable quickly once placed.
We have also found that his new pelvis is far more stable than before. He sits up really well (no falling over to the left side any more!) and looks really good sitting. It is clear now that his left leg is still about an inch to an inch and half shorter than the right leg. His orthopedist warned us about this after the surgery. They had to remove some bone from his leg which wasn't originally anticipated. We hope this doesn't cause problems later.
His infection also seems to be clearing up. Hopefully this means he'll be able to go to the pool this week. With the dry, hot weather we have been having, it would be nice for all of us to take a dip!
Annie
Miles sitting up really nicely in his bath seat. He was not able to sit up this well independently before the surgery.
Through 7-10-07
Yesterday and today have been lessons in pain management. We only medicated Miles twice yesterday and he seemed alright except when he was being moved. He also slept ALL DAY. Today, we went down to half doses of his medications, and that might have been a little too soon. He still was very sleepy, especially after being moved. He acted like he was in more pain today, but that may have been partly because we lowered the doses. He did okay at speech therapy, but it was not his most alert session.
The big event today was the long soak in the tub. Miles smells a lot better and this is almost as nice as having the cast off in the first place. It took both mom and dad to get the job done (sorry, no pictures!), and it was pretty gross removing all that dead skin. One more good bath, and we should be back to normal. All the steri-strips are off and we got a good look at his scars. They look good, for scars. He's going to have to come up with some really cool story about having a bionic pelvis!
Annie
7-9-07
Today was the big day, the cast is off! The great face-off with THE SAW went much better than expected even generating smiles from Miles. Granted, he had taken full doses of Tylenol-3 and valium before the appointment, but we didn't see tears until the cast was off and Miles was able to move those stiff legs.
He's been outfitted in a brace. He'll be spending less and less time in the brace until he just sleeps in it at night. It is far more comfortable than the cast and the purpose is to keep him from crossing his legs and to help him transition from the cast. He's able to bend at the hips and knees and has been moving quite a bit. Most of this movement is due to muscle spasms as his freed muscles adjust, and it doesn't seem to be causing him a great deal of pain. We're going to keep him on a regular schedule of painkillers and valium for a couple of days, then wean him back off by the weekend.
He does have a minor infection at one of his three incision sites (the other two look good). It didn't quite close right in the middle. It should clear up pretty quickly now that we can get to it and treat it. We are hoping to get Miles into the pool as soon as next week!
He will resume physical therapy next week, starting gently with range of motion exercises and gradually progressing until he can resume normal activities. He should be able to go to speech and occupational therapy this week as usual. Hopefully he won't be too spacey!
The highlight of our day was the the first of many baths to come. Hopefully, the next bath will be a regular bath, but we didn't want to push it today. Miles was a bit "earthy" smelling, and getting him nice and clean was a big relief for all of us.
Annie
THE SAW
"This isn't as bad as last time..."
The "crab cracker."
Goodbye to the front of the cast.
The calm after the fury.
What was done. If you look carefully on his left hip, you can see where bone was inserted (it's the whiter part). There are clear signs of healing.
The new brace. Bionic boy!
Free at last.
Through 7-5-07
We missed the 4th of July parade in our neighborhood, so we made our own. It wasn't too hot to stay out for a few minutes, and there was a nice breeze.
The difference was THREE hot dogs...
Through 7-2-07
Miles is doing remarkably well. He's really gotten into a routine, and is mostly smiles and very talkative. He's figured out how to move quite a bit despite the cast.
Therapy last week went very well, and he worked hard for his therapists. Granted, the first ten minutes of therapy, we think he was just enjoying not being at home! Both his speech therapist and occupational therapist adapted to his position. Everyone at the therapy center was impressed with his wagon!
On Saturday, Lolo and Lola left to return to Ohio. Miles was a bit out of sorts and did have some moments... Clearly, he was used to having his grandparents around!
Sunday, Rachel and Ellie stopped by with their parents to pick up their wagon and a visit. Miles LOVED seeing the girls and had a fabulous visit. He was very talkative and quite impressed with their tumbling! After the visit, Miles took a nice, long nap.
Miles and I have been doing just fine on our own for this week. Daddy comes home for lunch, and he is five minutes away if there is an emergency. We have confidence that there will be no issues for the next week.
July 9 is cast off day. We can't wait. Any of you who have had a cast understand that after time, it builds up kind of a funk all its own. His cast is well decorated by stickers (we'll post a final photo before the cast comes off!). We hope that there is not a second cast. Depending on how Miles is healing, he may get a brace or a wedge for sleeping rather than a second cast. If we do need another cast, we'll have to decide on a color, or should Miles go with red again?
Annie
6-22 and 23-07
Miles is back into his routine and as much back to "normal" as one can be in a full body cast. Lolo and Lola have enjoyed playing with him and his toys. Everyone is amused by the television programs Miles enjoys (Nascar, the Backyardigans, the Upside Down Show among others).
Zoe came to visit with her parents and Miles enjoyed the pink feather boa dance the best. He didn't seem to mind at all being covered in pink feathers! Even though he slept through the first part of the visit, he was delighted to wake up to an energetic guest.
On a walk with Lolo
Zoe with Miles
6 - 20 and 21-07 Wednesday and Thursday
Yesterday was a changing of the guard as Grandmother went home and Lolo and Lola arrived. Typically, Miles slept through the transition! He has enjoyed the attention from Lolo and Lola, but I do think that we was looking for Grandmother the rest of yesterday.
We are having mostly happier awake time with lots of smiles. Every now and then, he gets frustrated and angry that he is still in the cast and this is to be expected. He has not had pain medication for four days, all good signs.
Today Miles had his first four-legged visitor. Bella came with her people and Miles really enjoyed the visit. He especially liked having his feet sniffed!
We've had some moderate success on the "stinky boy" front. I have two words, Odor Eaters. Who knew that shoe inserts could be so useful? We've quartered some old cloth diapers to fill out Miles' diaper and keep him from missing the padded part. He has a cotton codpiece, but it is working. We've also had some success with the adult incontinence pads at night. No major accidents since we started these procedures.
Lastly, we heard that Miles' cousins have finally seen the blog. Their comment when they saw the pictures: "Oh my goodness, they glued his legs together!" How could you not love that! I bet that is how he feels most days.
Annie
Note the Odor Eaters!
6-17 through 19-07
The past couple of days have been filled with up and down moments. We are working through the challenges of the spica cast and dealing with all the things that no one told us about working with Miles in the cast.
First, before I go into those items... It has been pointed out to me by my father (on Father's Day) that we did not review why Miles had the hip surgery in the blog. For those of you who don't know (or don't remember), Miles' left hip was out of alignment. His left hip socket formed higher than his right, and the femur has been slowly moving out of alignment from the joint because of his muscle tone. When he gets excited, Miles tends to extend his extremities and thus has been gradually pulling his ball joint from the socket...not to mention that since he does not stand on his own (like typically developing/walking kids his age), he was unable to put weight on his joint helping it to seat in the the socket. This has been starting to cause problems for sitting, walking, bike riding, etc. Rather than have the ball joint actually dislocate from the socket, we elected to have the surgery now to fix the problem and to ward off future problems. His left hip socket was re-aligned with the right in his pelvis and both the top of his right and left leg were angled into his hip sockets (by cutting into the bone) to keep them from working their way out. The right leg was done so that it would match the left. So, that's what was done and why it was done. It helps that we chose to do it at the beginning of the summer so that he "should" be mostly healed for the start of school in August.
About working with the cast... It has been really challenging to find good positions for Miles as well as good ways to transport him. We've solved some of the transportation issues (the wagon is still good!), but we were still challenged by positioning him throughout the day. We pulled out his bath seat and found that we can get that set up so it is like his own personal recliner in the family room. Pillows on the couch and/or floor just were not as supportive and he sank down way too much. We still put him on the floor for train watching and other positions on his sides, and a yoga mat provides a much more comfortable non-slip surface than most other things. Two positional problems solved.
Now, on to what no one tells you on any website about spica casts (do a Google search for yourself). No matter how careful you are, there are going to be leak issues if your child is non-verbal and incontinent like ours. Now that his swelling has gone down, there is no way to "tuck in" the diapers to have a secure fit. This is what the websites tell you to try: two diapers, a small one inside a big one; incontinence pads or sanitary napkins inside the diaper; securely tucking in the diapers; changing diapers every two hours; and even using plastic wrap to protect the cast. The cast is lined on the inside with cotton. Once there has been a leak or if there are any gauze pads left in from surgery, there is a "wicking effect" that just sucks urine into the inside of the cast. The end result is that your child smells like a cross between a cat litter box and the men's restroom at a sports venue. None of the sites tell you how to deal with this. We've tried everything that has been suggested. Miles, creative child that he is, still manages to avoid the inside of the diaper entirely and get to the outside somehow. If we come up with solutions, we will post it here. Perhaps some parent out there who will have a child placed a spica cast will benefit from our challenges. We take small comfort in the fact that we're not the only ones to go through this...unfortunately, it's a little different for each child.
Meanwhile, despite the fact that he stinks, Miles is coping with being trapped. He has been playing with toys and having some quality awake time. His sleep schedule is quite off. He is not taking the pain medication regularly, so we think that is great. He still naps quite a bit, but that could be partly healing and partly boredom. The good news is that on July 9th at 2:00 pm, he has his follow-up appointment. This cast is coming off that day. He'll have an x-ray of his pelvis (maybe we could post it in the blog!). He may or may not get a new cast, but I can assure you we will not be saving this one!
No other significant news. There will be a passing of the torch between my mom and Lola and Lolo tomorrow.|
Annie
Miles' bath seat as lounge chair.
6-14 & 15-07 Thursday and Friday
These past two days have been mostly about getting back into a routine and adjusting to moving Miles around the house. He has been doing great and is returning back to his same old self. Each day he has less sleepy time and more wakeful Miles time including lots of smiles and even laughing. He has really enjoyed his train and other toys and videos. It certainly doesn't hurt that there is lots of car racing on television right now!
The main challenge has been moving Miles from place to place. Wil can move him by himself, brawny man that he is, but I need a helper. Mom and I have been able to move him from the sofa to the living room and back, and it must be a pretty funny sight (she has one end and I have the other)! We have a lift (photo below), but the mesh seat doesn't support his head very well. In addition, the lift does not work well for traveling distances longer than half the room. It quickly becomes a swing which is not very safe! We have also found that the recline wheelchair which worked just fine in the hospital does not work so well on pavement. Miles kept slipping down since there are no safety belts. This is not the ideal situation. We are exploring other options including wagons...
Miles had several visitors on Friday. Rachel and Ellie's parents stopped by with the coolest dino balloon ever (and their wagon for a test drive!). Miles' physical therapist stopped by and talked horses, cats, dogs and bunnies. One of my former coworkers also stopped by, and Miles flirted a bit before taking a pretty serious nap, and then woke up and flirted some more. The sticker collection on his cast is slowing growing!
Miles upper body movement is making up for what his lower body can't currently do. He is moving BOTH of his arms much more than he normally does and waaaaay over his head, which he also will not normally do. So, he may come out of this with more upper body strength which could be a good or a bad thing. We'll see.
All in all, two good days.
Annie
The sling seat for the lift. This was before his head slipped off the top end...
6-13-07 Wednesday
Last night, right after we posted, the doc stopped by and let us know that we were on the way home. YAY! We were offered the chance to go home last night, but after 9 pm we didn't think that was such a good idea... We let the doctor put the first sticker on Miles' cast and he found the one that said "doctor." Imagine that!
This morning, after IV removal, discharge paperwork, etc. we were on the way home! My mom arrived at 9 am just in time for discharge. After strapping Miles into the back seat, we were at the house by 9:30 and Miles was exhausted by all the moving around. We spent the rest of the day changing his position every two hours. He would be awake some of the time, but spent most of the day napping. We do think he is happy being home.
You can see the pictures below for some of the positions we tried. We are finding that it takes two of us to move him comfortably. More amusing positions are sure to follow.
Annie
Miles' first sticker from his doctor. Note how it says "doctor."
Strapped into his "carseat." All the belts keep him secure, really.
In trying out different positions, we attempted vertical via bungees. Think Cirque de Soleil! He can't bear weight on his feet, so we may have to use smaller bungees.
Hanging out on the couch. Yes, this is a doctor approved position!
Finally getting to see his train.
Miles with his brother Malcolm.
