Saturday, October 31, 2015

Cast #3 is done!

Cade got cast #3 taken off on Thursday.  He tolerated 9 weeks in that cast just as well as he did 6 weeks in the first two.  There was one difference.......this one worked!  Cade's curve is down to 20 degrees!   It was previously measured around 37-42 degrees.  This was fantastic news and doctor says we will continue with casting as long as he is responding and his curve is decreasing.  The goal would be to get him under 10 degrees before moving to a brace.  Cade is enjoying a break right now until Wednesday 11/4.  We have been to the indoor pool and the boys enjoyed a special spooky glow in the dark bath Friday night.  Thank you for your prayers!


Sunday, August 30, 2015

Cast #2 Removal and Cast #3

Cade got cast #2 off on 8/20.  He enjoyed swimming at Uncle Charlie and Aunt Cheri's house in OK that weekend as well as time spent at the indoor pool and new splash pad near our house throughout the week.  He did the EOS X-ray machine which delivers 7 times less radiation than a normal X-ray.  However,  it takes longer and requires him to hold still longer so it took 2 tries.  Doctor still wasn't sure if it was an accurate scan because he looks like he is leaning in it.  So, it showed no change in the curve.
After a week long break, he got cast #3 on 8/28.  We arrived at 6am and were home by 11:30.  We opted out of the calm-down meds this time (Versed) and he did great!  A wagon ride and I-pad on the way to the OR worked like magic.  He came back to us much calmer as well.  He'll be in this cast about 9 seeks until 10/29 and then enjoy another cast break over Halloween.  Cast #4 is scheduled for 11/4.  His current cast is blue with Superman tape just like the first one.  We couldn't talk him into red for the Chiefs so maybe it will be another Blue October!


Playing with toys after cast removal

After cast #3, happy camper






Wednesday, July 8, 2015

Cast Break and Round 2

Cade enjoyed a 6 day cast break that was perfectly timed over the July 4th weekend.  We went to a party Thursday night to see a local firework display.  Friday we hit the KC zoo because the high for the day was 80.  We went to another party that night.  Saturday we made it to the neighborhood pool and enjoyed our first round of pool time together (I snuck Rylan out for some pool time one afternoon while Cade napped, but 1st time for Cade).  Sunday and Monday we hit the neighborhood pool again.  Tuesday we improvised with one last swim at the indoor pool at the gym due to rain.   It felt like a mini vacation this weekend!
Cade had a later start time this morning for cast #2 and we didn't have to be at the hospital until 8.  He did great waiting and was entertained with all of the toys-he even got to play on an I-pad while waiting to go to the OR.  We did everything the same as last time including opting for calm down meds before separating from us (Versed) and anti-nausea meds.  The Versed makes him more confused as to why we are not going with him instead of screaming and crying when we separate.  After about 30 minutes in the waiting room the receptionist called us and told us to go in a conference room and answer the phone when it rang.  Eric remains calm at times like this and I automatically panic and wonder why they are calling us this early.  Turns out they didn't have the fiberglass color he requested and we had to give a 2nd choice.  Ahhhh, relief!  Probably 30 minutes after that I get a call on my cell from the hospital saying something about delivering a reclining wheel chair for Cade.  I am completely confused and ask why he would need a wheel chair since we had not discussed this.  The woman on the other end just says "oh, I'll wait until the doctor talks to you then".  I then panic again thinking they saw a fracture on his X-Ray or that he somehow was hurt during the procedure.  I asked the receptionist if I could get an update on Cade due to the phone call but she thought it was just a wheel chair to get him to the car.  Luckily his doctor came in a little bit after that and told us everything went great.  He was more aggressive with the cast and got more in-cast correction this time.  He didn't give a number but showed us the X-Ray and his spine looks pretty straight in the cast!  I told him about the phone call and he thinks they got Cade mixed up with another patient he has (same 1st name) that has a femur fracture and needs a wheel chair.  Cade was more agitated this time when we met back up with him in recovery.  This apparently is a side affect of the Versed.  Calm before surgery but very agitated and hard to please after, so I don't know if we'll opt for it next time.  After staying for observation for a while we got discharged.  He was doing better on the ride home and much better after a late lunch.  I got him down for a nap and he's been great the rest of the night.  He has a black cast now to go with the batman tape we picked for this cast.  He'll stay in this cast 6 weeks again.  His doctor actually put the same type of cast on another kid right before Cade this morning.  They currently have 4 kids undergoing this type of casting in their practice (he has Cade and the other kid and another surgeon has two kids).  I've been curious how many kids at a time they see with this since you don't read about Children's Mercy KC when researching Mehta casting.  There are other hospitals that have doctors that really specialize in this and primarily work with casting so people travel out of state sometimes for this treatment.  We're very lucky to have a facility in our city with trained doctors and the necessary equipment.  Here are some cast pics and his in-cast X-Ray:
 

Thursday, July 2, 2015

July 2nd: Cast #1 done!

Cade had cast #1 removed today.  He made it the full 6 weeks with very little complaints.  We are very proud of him.  We arrived at the hospital at 10 this morning and they removed his cast first.  He was a little scared of the noisy cast saw but did great.  His nurse was awesome.  She used the saw to cut through the fiberglass layer on the outside but then used cast scissors to cut through the 2nd layer which was plaster so that it wasn't as loud and scary.  Other than some grimy dirt, his skin looked really good after removal-yay!  He was very itchy and it took him a few minutes to adjust to it off.  I'm sure it feels weird to go from having something stabilizing your back that weighs 2-3 lbs to suddenly not having it.  We then had an X-ray to check progress and tried the EOS machine which emits a lower dose of radiation than a typical X-ray machine.  The tech was a little reluctant to put Cade in it because it takes a little longer than a regular X-ray and he has to hold still.  It took 2 tries but we got it!  We then met with his doctor.  There was a little bit of correction with this cast which is great!  He originally measured Cade's curve at 42 degrees in March.  In cast he got him to 15 degrees, and now out of cast he is at 37.5 degrees so we are looking at a 4 degree improvement.  One of the sayings I've heard regarding this process is to look at it as a marathon, not a sprint.   It will likely be a long process but very worth it if we avoid or at least delay surgery.  We are looking forward to swimming, baths/showers, and cuddles for the next 6 days.  He will get his 2nd cast on 7/8.  Thank you for the prayers and please continue to pray that this process goes well for him.

 




 X-rays in order: starting 3/17/15 at 42, in cast 5/19/15 at 15 degrees, and out of cast 7/2/15 at 37.5 degrees.


Tuesday, June 16, 2015

X-Rays

We are more than half way through this first cast and Cade is still doing great!  We've only had a few hot, sunny days where we miss swimming thanks to all the rain we've been getting.  Potty training is still going well.  He's pretty much there unless he is having too much fun when playing.  He has tolerated car trips pretty well until this past weekend.  We went to Owensville for a wedding and once we hit the half way point, he had to stop and stretch his legs every 30 minutes due to the cast rubbing his hips.  This happened on the way home too so we'll make sure this isn't a problem in #2 since we will be traveling to Owensville, Colorado, and Oklahoma during that cast.
I received a copy of Cade's x-rays.   The 1st one is from 3/17/15 to confirm his diagnosis.  It is a standing X-ray.  Starting point- 42° curve to the left T6-L1, RVAD 10°, rib phase 2 (this is mostly for my info to remember).

2nd x-Ray done in OR.  In cast laying on traction table.  Got curve
to 15° in cast.

These are just photocopies so not the best quality, but you can get an idea of what his spine looks like.  He will get an out of cast X-ray on 7/2 to see if there is any correction or if the curve has managed to get any bigger despite the cast.  It was probably larger than 42° when he actually got his cast because the doctor thought it looked slightly bigger on the MRI and there was 2 months between the first Xray and his cast which is plenty of time for a curve to progress in size.  We are staying hopeful but realistic.  Most kids have 6 casts at a minimum so it is a process, but well worth it if it means avoiding future surgeries.  Thank you for your continued support and prayers!



Wednesday, May 27, 2015

Cast 1: One week down

Cade has made it one week in his cast and is doing Amazing!  He really hasn't let it slow him down.  He struggled a little with figuring out how to get comfortable the day he came home with it, but by the next day was getting up and down from the floor fine and is pretty much able to do everything he did before. He is sleeping fine in it and his appetite hasn't been restricted at all. Luckily the biggest challenge has been figuring out what clothes work.  Cade returned to preschool last Thursday.  Over the weekend, he enjoyed boy's night with Daddy and Rylan.  Saturday and Sunday we hung out at home and worked on potty training.  Monday, he went to a party at a neighbor's house and enjoyed a bounce house and playing with lots of kids.  He has only asked once or twice to take the cast off.  Daddy gave his cast some swag Monday night by adding Superman duct tape to hold down some of the mole skin that was peeling up from his clothes rubbing.  He's been getting sponge baths and enjoyed a good hair wash Monday night over the kitchen sink.  This week, he is going to preschool Tuesdays-Thursday and has worn underwear-yay!  The boys will stay home with me Friday and then we'll have our first long car ride in the cast as we travel to Owensville for the weekend.  Here's some pics of our little trooper from this week.







Tuesday, May 19, 2015

Cast #1 is on

We arrived at Children's Mercy a little before 6am today.  Cade did great.  He didn't ask about eating or drinking and enjoyed playing with all their toys.  He was cleared for the procedure and they started around 7:30.  He had a calming medicine before we had to leave him so he did not scream and cry (like the MRI).  They gave him a little gas to put him to sleep before putting in his IV. They finished around 9:15 and Cade's doctor talked to us.  The MRI was clear-no abnormalities of the bones or spinal cord which was a relief.  He did say Cade's curve probably progressed in the 2 months since his last x-ray because it looked larger on the MRI but he did not give a number.  It would be hard to compare numbers anyways since Cade was laying down for the MRI and the x-rays are done standing since that it more accurate.  The good news was that they got him to a 15° curve in the cast.  He tolerated everything well and we were able to see him by 9:45.  He was crying and asking for Daddy when we got back there but was better after sitting on Daddy's lap.  He did complain about the cast hurting and wanted to take it off.  The nurse reassured us that he was just a smart 2 year old who knew if he complained about it hurting we might remove it.  It is heavy and probably uncomfortable but we are supposed to give him time to get used to it.  We were out of there by 10am and headed home.  Once he got home and had all his toys he was much better.  He got anti-nausea meds so no throwing up this time:). We were really surprised at how quickly he has adapted already to his cast.  He is now very proud of it and had to show it off to Rylan, Lolly and Pop, and Nana and Papa.  He is figuring out how to get up off the floor and comfortable positions for sleeping and playing on the floor.  He's going to spend the day tomorrow with Lolly and Pop so he can get more comfortable moving around.  Thank you for the prayers.  We continue to pray that the cast
helps his spine grow straighter and decrease his curve.  He will get this cast off July 2nd and will get x-rays to see how he is responding.  Hopefully his curve will be lower than 42° out of cast.  He will get his 2nd cast on July 8th and it will be on 6-8 weeks.  Keep praying!