4 Pamidronate infusions down; four more to go

We made it through another long day at Fletcher Allen Health Care getting Pamidronate infusions.  The boys are getting these in hopes of increasing their overall bone health and, hopefully, avoid breaks.  The boys have each had a couple of broken bones but we truly have been lucky in only having a few compared to many kids that suffer multiple breaks.  And, all the breaks we've had have been before we started the infusions.

Anyway, once again it took us longer to get the boys ready for the day, up in their chairs and out the door but we made it to the Children's Specialty Center by 9:50 which was only 5 minutes past my goal :)   We had to wait a few minutes before we were called back, but not very long.  Vitals taken and weights recorded and then we went and settled into the infusion bay.

We got Casey onto the bed and comfy.  He certainly had his moments of grumpiness and loud vocalizations but he also cooperated and read some of the Spark notes on My Sister's Keeper with me.  The child life specialist also came and spent some time with him chatting and changing the TV and movies.  We all had our turn entertaining him!

Colin stayed in his chair but next time we'll get him out so he can be repositioned better.  He gave us a lot of "ows" but mostly because he didn't like that he had to keep his arm as straight as he could.  the nurses got right to warming up both boys arms with hot packs and towels.  The IV nurse got his vein on the first 'pick'!  She drew the pre-infusion labs (calcium and phosphorus) and also Vitamin D that I had requested since we've upped the boys daily dose in hopes of getting their levels up.

Dr. Zimacas came in and I updated him on the boys diets/supplements.  He'd like them to be getting more calcium so I'm going to ask our nutritionist to sit down with me and work on the boys diets.  It's been about almost two years since we've taken a detailed look at everything.  The boys nutrition labs have been good so I'm not wanting to change much but I'm sure it will be good to go over everything again.

Both boys were examined by Dr. Z.  May need to get an ultrasound of Colin's 'package' but he said it's low on the priority list and not to worry too much.  We may need to look at jump starting Casey's puberty but we've still got time so nothing to do in the short term.

We will schedule the boys for a dexascan next time to see if we can get a picture of their bone health.  Years ago we had them done and the results were not very valid.  With Casey's fusion hardware and how we positioned Colin they didn't get great pictures.  This next time we'll look at different areas to scan on the boys and hope we can get a baseline so that when we're done with our two years we'll take another scan and hopefully see that we've been making a positive difference.  Of course, not having any future breaks will be the real test, and the best reward!

All in all, everything went pretty smoothly.   Casey got pretty chokey and full of secretions at the end and Nancy had to trach suction him several times.  Next time we'll bring up our cough machine or order one from respiratory.  MAYbe we'll have the new, portable version and it will be easy to carry instead of having to bring the big ole honker on the luggage rack.  I gave Dr. Lahiri a list of things to put on a script for the Respironics T70 Cough Assist.  I've been waiting for the branch manager at our Apria to look into getting one but I don't think he's looking very hard.  If he has the script from the doc he'll have to start doing some fancy footwork, I hope.

We got home at about 3:30--took awhile to cough Casey in the valet parking area and get them loaded up and on our way home, but we did it!

Casey clicked some channels in the yellow room for a while.  Colin went right to his mattress with a big "AAAHHHHHH" and has been happy with his shows.  Brooke is here for the evening so she's wii-ing with the boys.  Colin is intent on watching and Casey is spacing out watching some football and being very quiet.  Casey seems to be affected a bit more by the Pamidronate than Colin.  He'll be back to his feisty self in the AM. 

Sorry no pics!  I could have taken some with the ipad but didn't think of it until now :)

Back in the stander again

We're hoping to get Colin back on a regular standing regimen again.  It's tough when he has to get his academics in as well as stretching and other PT activities, oh my!

Colin on the ball

This morning Christina came to help Priscilla and I work with Colin on the therapy ball.  It went okay.  Colin wasn't thrilled but Priscilla gave him a choice of stander, belly on the ball or sitting on the ball and he chose sitting.

Here he is:

Oh, and we had taken some time off from the new 'Wisp' mask.  He had done fine with it for several nights and then one night I had to come down at 1 AM and switch him to one of his other masks.  I put it on him last night while he did his shaker vest and he wasn't thrilled but when I promised him I'd play an hour of Batman wii with him after school the next day he relented.  And, he had a good night!

 Here he is relaxing with his new mask and doing his shaker vest while hoping I'll let him just be and not start getting him ready for the day.

Casey had a good day today.  I didn't even know but they went out in the community today.  He was supposed to go with the kids yesterday but we had the snow day.  I didn't think that they'd head out today.  Oh well.  They got dropped off at the Burlington Square Mall.  One of the other kids in the program (a guy) hung out with him.  Apparently, he did some great driving.  Maybe having another student there motivated him--who knows.  At least he did better than last time he went to the U Mall and had a meltdown.  He drove most of the length of the mall checking out store fronts and heading into some stores. Of course, many of the stores are not very accessible.  Pottery Barn and William Sonoma were too crowded for him to go into.  One store he went in to and did a good job backing out, according to Nancy.  Good for him!!

Snow day!

First call came at maybe 5:45 AM for a two hour delay.  Went back to sleep.  Half an hour later we get the call for closing.  No more sleep after that for me.  Somehow the phone calls didn't jazz Gene up because he was able to sleep more :(  

Boys slept in until about 9:15.  Lazed around watching School House Rock. 

Casey had a shower with Julie. 

Colin was practically bursting with wanting to play wii.  Casey had no desire so he hung out in his chair with his DynaVox, listening to The Beach Boys and watching the snow fall.  Julie and Colin played some Sam and Max.  It took her a while to catch on but then they did pretty well.

I've been wanting to change Casey's g-tube out for a while now.  I discovered that we hadn't changed it since July 4th, 2012!!  We usually wait 6 months but somehow, the time escaped me.  Colin's was due, too, but he had a full belly so we decided to wait.

Nurse Julie did Casey's change.  It went perfectly and looked perfect, too!  Take a look!

Orthotics casting and measuring

Today after school, Deb came from Biomedics to do some casting and measuring on the boys.  Colin went first.  First came the AFOs (ankle foot orthotics--supposed to help keep his foot and ankle flexible and straight and not turned down).  This is not Colin's favorite part.  His hands and feet immediately became drenched with sweat and his heart rate skyrocketed.  At one point his heart rate hit 185!  This is not a good thing.  Immediately after the casting material came off he went back down to almost his normal; 110-120 something.  Next, she measured him for TLSO (Thoracolumbosacral orthosis-which is a back brace that is supposed to support him when he's sitting up or standing).  Instead of casting him for this, which would take a lot of repositioning and fussing, she makes dots on him with marker and then measures him.  He loves this part!  He wanted more and more dots.  He's funny that way.  Whenever he does art and gets paint or marker on himself he doesn't want it washed off.  The fun part is picking the strap and Velcro colors.  And, this time he was able to pick a colored plastic part as well.  They now have colored/decorative transfers that can be put on the main plastic part of the orthotic.  Colin picked some wild swirly blue and then some snake skin looking ribbon to go over the Velcro straps.  He watched some Batman on the ipad while we worked on him.  He half watched, half complained and half laughed the entire time.  He is a weird kid, lol!

Casey was next.  He was measured for new night time leg braces that help stretch out his knees. They have tension, which we can change, and get them straighter and straighter.  In Casey's case, we just hope to keep him from regressing.  He is pretty contracted.  He sits so much in his chair, that it's been hard to keep him flexible in his knees and his hips, too.  We can only do what we can do!  Casey immediately picked out the blue under the sea transfer for his braces.  It may look weird with the leg braces but the only people that will see them are the night nurses, lol.  He got blue camouflage ribbon to go with them.   He tolerated everything with minor fussing.  Deb is really very efficient and quick.

Now we wait until April 11th and she'll come and do a home visit to see how things fit.  We'll also mark the opening we want for Colin's g-tube and she'll take it back to the shop to cut it out.  She'll come back again to fit the TLSO and do a check up on how Colin's AFOs are fitting and how Casey's nighttime braces are fitting.

Neither boy had the best day at school.  Casey was loud and didn't want to do much work.  Colin was distracted and not into doing much.

Nurse Nancy won't be back.  Still out for her arm.  I don't think she'll be back until mid-April, after her vacation :(   We'll have nurse Brooke for the first two weeks of April, so we'll be okay...Colin will miss his Nana L though.

We're bracing for a snow storm tonight.  I may end up keeping Casey home from school tomorrow.  We'll see what the night brings.