Isolation

It is funny, at a time where everyone else is trying to get together with family and friends for the holidays we are going to be working towards isolating ourselves...well Ethan at the very least.  We have had to cancel and turn down respite and have cancelled at least one session of therapy.  Lorelei was able to attend one holiday party though, so she is happy.

Ethan had his appointment with his respirologist and among other things she suggested we keep him isolated, especially while he is casted.  He does not qualify for the RSV immunization and apparently they will not exempt it because he is over 3.  She would like to see him stay in the cast long enough to work and for his lung to heal from the rough year he had.

...so today we faced our big cast worry...  Ethan pooped up the back of the cast!  And not just a little bit, but up to almost his shoulders.  And my hand won't reach that high!  Clayton was the one home to deal with it at first and then when I got home I took a go at it.  I consulted with the pediatric orthopedic surgery residents and they said, try to get as much off as possible and there isn't much else that can be done and given the holidays and they couldn't deal (read: not yet qualified) with recasting him anyway.  After the holidays I can contact the surgeon's clinic to see if we should do anything.  Clayton got the shirt under Ethan's cast off and we got it cleaned...now we will have to figure out how to get it back on.

Getting a Cast

Although we were a bit late getting out the door, we got Lorelei dropped off at a friends house by about 6:50 this morning so she could go to school and were on our way to the hospital.  Thankfully the roads were good and traffic was light.  We had to wait to register, but that wasn't really that long before he was called into the Pre-op room.

Ethan in his fancy new shirt getting ready for the casting.

Although his eye looks open, Ethan fell asleep before his OR time.  Not surprising, he was up at 4:30 this morning (as were we)...

Ethan in the recovery room.  This cast is much thinner than the last one back to the back.  He recovered very well from the casting this time and I think the shirt fits nicely under his cast.  The cast is still all rough around the edges because they wanted to adjust it before putting on the final layer.

Ethan's cast was adjusted later in the afternoon and they removed an inch in the length and around his face so he can move more freely.  The headphones are to mute the sound of the cast saw.  He kept giggling when she was doing the adjustments to the cast.  It was pretty cute.  :)  They did not put on the final layer as they want to see him again in clinic next week in case final touches are required.  The surgeon said that they got a better correction with this cast than the last time.  :)

All snuggled in for sleep.  Hey wait, what's that?!  He's home in bed?!?  :)  He was discharged home today instead of keeping him overnight.  He already had a bit of play time on the floor today and with a bit of help it went alright.  The good news is the shirts I bought him in May still fit over the cast, so I do not have to buy more t-shirts for him just yet.  Thanks for all the good wishes, I'm sure they did him a world of good!  :)  Now just to keep him healthy...

Hoping for Well Wishes...

So far we are still on course for Ethan to get his cast tomorrow morning.  (You know I'm knocking on wood!)  His nurse said his chest sounds very clear and feels he is well enough to get the cast.  It has been a hard task trying to keep him healthy, especially with Lorelei having a cold!

For everyone who has heard me gripe (for lack of a better word) about the cost of the shirt we bought to go under Ethan's cast, I thought I would share with you what a $73 shirt looks like.

And this is what it looks like when you pay someone to put a hole into it (for a fee of course ;)).

I just hope it works out well for him.  It is supposed to reduce the risk of sores from the cast and to provide more comfort.  It is stressing us out a bit though to be honest...not just the shirt but the casting as a whole.  I know, after all my griping (there's that word again) and pushing to get him casted again and now we have stress???  Believe it or not this stress is not related to the procedure or the fact we have to try to keep him healthy for a while now...it is bowel movements.  That's what the stress boils down to...  A week ago we had to administer some PEG Lite at home, it was the first time we've given it to him (he's had it in the past but that was while he was in therapy)...it took about a day to take effect, but then it came and came and softened and loosened and down right turned to water.  A week later and it is finally starting to go back to 'normal' which isn't all that solid (nor should it be by the way).  But during the past week, we've dealt with a lot of blow outs.  Mainly down his legs, but there have been some that have shot up the back.  How do we protect the cast/shirt?  This is my stress right now.  Minor I know compared to other things we've dealt with with Ethan, but I have not been able to find a solution.  We have had a couple suggestions, but have not found any that are fool proof.  We do not have the luxury of trial and error...we need to succeed to make sure this cast stays on for the whole two months.  Any suggestions would be appreciated!  We use disposable diapers in case you're wondering.  For those who are not used to BM talks - I'm sorry to be so graphic!

On a somewhat lighter note, I thought I would take some pictures of Ethan pre-casting.  It might be hard to tell by the photos so I will explain a bit...

Much to our surprise, this one doesn't look as bad as anticipated (or how it has looked in the past)...I hesitate to suggest perhaps his acupuncture has been doing some kind of miracle???  This is the bottom part of Ethan's curve and it is subsequent to the true (and worse) curve up higher.

If you look carefully at Ethan's hips, you can see how they kind of sway up to the right.  This can be very pronounced at times.

Here you can somewhat see (pictures aren't that great) the rib humps he has.  One is by his Mic-Key button, this rib protrudes a bit more than the other side and up from that you can see a ridge, from what I understand this can be a typical side effect of scoliosis.  As the back twists, it starts to affect the rib cage and often creates a hump.  On a side note, you can also see the scar on the right hand side from where his port-a-cath used to be.  It might be hard to believe, but Ethan has gained a lot of weight since June and actually looks very healthy now.  I find his ribs look a bit bony in this picture.

Here you can see the upper part of Ethan's curve and how it is misshaping his right shoulder.  I really hope that the casting will show some improvement of the scoliosis.  Please keep him in your thoughts.

Here Ethan is ready for bed the night before his casting.  He typically wears this soft Boston brace to bed and in his pony walker and standing frame.

He was just so cute on Sunday afternoon during his nap time that I could not resist taking a picture...and then I joined him in a nap.  It was very lovely!  :)

As for Lorelei, she did seem better with her cold but is coughing a lot tonight and all of her new teeth are starting to come in.

Walking in a Winter Wonderland...

Okay, so a bit of a stretch since I will not be doing much walking outside today, but this is what greeted us this morning.  Like any good child, Lorelei was of course delighted.  Her parents?  Not so much.

Lorelei has been sick the past few days with occasional fevers and the onset of a cold.  She is finally well enough to return to school today.  She got to have too much fun the past two days (thanks to daddy & her uncle), but since she wanted to play in the snow was willing to return to school.
It's been a busy time for us.  I won't go into much detail, but let's just say I'm not a big fan of Nit Picking, but am very glad it has remained isolated to one person.  And really, as frustrating as it is...it really isn't as 'bad' as I thought...lots of myths abound...

On another note, Ethan had the longest day of appointments on Friday.  He got a pneumonia immunization and then had to have blood work done because they will be running tests to check out his immune system.  Then he had to wait for his oncology appointment, they were running over three hours late.  It has been a LONG time since we actually attended that clinic and we don't have to go back for another year.  Especially since there are no real concerns...  It took just about the whole day for those appointments.  Oh, and I also let them take a bit extra blood for a genetic study on drug reactions.  They are trying to find out if responses to things (IE: Ethan's reactions to morphine) are genetic, so I also gave them some DNA to work with. 

On Monday, we met with our Speech Language Pathologist, OT and someone from Augmentative Communications to try to devise a good strategy to help Ethan express himself.  It seemed to go pretty well and everyone was excited about moving forward.  We are going to be working more with pictures/symbols for now.

Yesterday we were back at the hospital for Ethan's pre-admit appointment.  And provided nothing seriously changes - he's good to go for the 7th.  :)  He was also seen by his cardiologist who believes that Ethan's small ASD has sealed, but otherwise not much has changed so does not need to see Ethan for another year.  Ethan also had an ECG done and they determined his heart sounds/works normally.  :)  I love hearing that word associated with Ethan.

So What Else is New?

When I started to write this post it had been 6 weeks since we saw the specialist for a second opinion on how to treat Ethan's scoliosis and the letter had finally arrived at our local surgeon's office.  The surgeon stayed true to what he told us when we were there, he wrote pretty much exactly what he'd said.  Then we waited for word from our surgeon as to when/how to proceed.  Waiting is so hard!  We finally saw the surgeon again almost 8 weeks after the second opinion and (drum roll please)... we will be casting Ethan again.  He is due to be casted on December 7th.  Please keep him in your thoughts that he remains well enough to be casted on that date.

While we were waiting he had the chance to mostly recovered from his recent illness.  He woke up one morning about 2 weeks ago around 5:30 am with a loose stool that got us out of bed to clean him up.  Then as Clayton was repositioning Ethan, Ethan's mic-key got pulled out and we had to rush around to get that back in quickly.  It seems we had a leaky balloon.  Ethan went back to sleep and then woke up just after 8 am vomiting.  By the time I headed to work around 9:30, he'd been sick 5 times, had a fever and was lethargic.  He remained feverish throughout the day, but the Tylenol was able to break it between doses.  From then he seemed to get over that part and into a cold-like symptoms.  Thanks to his sleep deprivation techniques, I then did not rest enough and managed to catch his cold as well.  We're both on the mend now...thankfully!

Lorelei has had an interesting time lately as well.  She lost 4 teeth in about a 2 week period.  It started with some bottom ones that were super loose and then the top front tooth got all crooked.  She lost one on the bottom and the next day out came the top tooth with a little help from Lorelei...

Shortly after numbers 3 and 4 came out as well.  Now she can sing "All I want for Christmas is my two front teeth" and really mean it.  :)

Belated Happy Halloween!

Although Halloween has come and gone, I thought I would share a few pictures of how we celebrated.  On the 30th, I realized we still had not picked up a pumpkin to carve...so off we went in search of one last minute.  We went to 3 different grocery stores before finally heading to a local farm.  Of course we paid a bit more, but I think Lorelei & Clayton made a great choice.

This year Lorelei wanted to help out a lot more and as you can see in the background (top right corner)...Ethan was busy playing on the floor with some of his toys.

We did have him join us for some sensory with the pumpkin seeds.  He reacted better than we anticipated.  We thought he would hate the feeling of the pumpkin guts, but he did not seem to mind them too much.  He of course was doing his best to pick them up from my hand and toss them elsewhere.  After Lorelei and I picked out all the seeds, I tried to see how he liked the feel of the raw seeds alone, but he was less willing to participate.

Lorelei just loved getting her hands dirty in the pumpkin guts...but did run to the bathroom a couple times in between to rinse her hands.

It was a lot of work to get all the seeds out, but we did it.  And I tried my hand at baking the seeds for the first time.  Add a little bit of oil, onion salt, garlic, sea salt and presto... 

They actually turned out pretty tasty.  :)

Another first this year, I dressed up and applied some face paint.  I often react to make up so just put on a little bit.  Not too bad for my first time.

I also had a neat cat tail that gave me a better perspective of what it must be like to tote one along with you all day.  The one time I sat on it, it was quite uncomfortable so I made sure to sweep it to the side each time.

Lorelei agreed to wear the same costume as last year, but I tried to spice it up a bit with face paint for her as well.  Right after school I got busy with the face paint before supper and had her ready to go trick-or-treating...and of course she ended up smudging up some of the make-up.  At least I was smart enough to take a picture when I finished applying it.

We did not coordinate things well enough this year to get Ethan dressed up in a costume and because of the rain we did not take him out.  He was somewhat dressed for the day though.

I hope everyone had a great Halloween!

Typical...

...not something we hear very often with Ethan...but this one has a bit of a negative side to it.  He is displaying typical withholding symptoms.  That is what his GI doctor had to say yesterday.  He figures Ethan had a negative experience with stooling and now he tries to withhold, but by withholding it makes the gas worse and the stools more explosive, which tells him that he needs to continue to withhold and makes it worse...and the cycle continues.
His ENT appointment wasn't very successful either.  He threw up when they went to test his hearing and then did not participate in the test.  His ears are okay and the doctor wants to wait for Ethan's other issues to be addressed before thinking about making any changes to Ethan's care.  There is a surgery available for his drooling but it could cause dental issues - so we need to see what his adult teeth are going to do or if time will correct it.  He suggested we might want to do another swallow study, but knows that now is not the best time because we need to keep his lungs safe. 

Meanwhile besides the withholding, he is doing pretty well.  He is in respite for a couple days now and we are awaiting news from the orthopedic surgeon.  The second opinion has yet to be transcribed...and our doctor doesn't want to proceed until he gets this report.  So again, we wait!

My mom visited recently and took a couple pictures that I thought I would share.

If you look closely you can see Lorelei's right eye infection.  But you can definitely see the maternal resemblance.  :)

And here is some of that maternal attitude.  :)  Okay so Ethan's not showing attitude, just some innocent finger chewing.