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.

Okay so...

...about a bottle and a half of Tylenol, a bottle and a half of Advil, a bottle and a half of antibiotics and almost a bottle of eye drops and it seems Lorelei is mostly better.  She stopped having fevers on Tuesday.  We're just finishing off her antibiotics right now.  We started to treat the other eye because it was looking a bit red and I think we avoided a full blown infection in that eye.

Ethan came home on Wednesday morning a bit congested but otherwise is doing well.  He's very chatty which is lovely to hear!  :)  The downside is that he is still having a lot of tummy troubles.  Each morning he screams in pain and tenses up when we start the feed, produces some gas and then has a bowel movement.  I do not think he is still constipated and have started to inquire with the dietician if it could be his feed that he isn't tolerating.  On August 31st we started him on a reduced calorie (from 1.5 to 1.45 calories/ml) diet which had us blend two different feeds together.  To test this theory we are pulling out the additional feed and only giving him the original one.  I'm not sure if we'll see a change but at least it will rule out the feeds if he continues to have troubles.

In a couple weeks we will meet Ethan's 10th specialist (not counting his pediatrician, dentist, the periodontist he saw, the dental pathologist he saw, the dermatologist he saw nor the second opinion) for his Endocrinology appointment.  And this week we got a call that he will meet specialist #11 an allergist (who we're seeing for her immunology specialty) early next month.  Next week he goes for his hearing test and to see ENT - good timing given his recent bouts of ear infections; his GI doctor  - hopefully we'll get some answers about his tummy troubles; and he will be poked to test his blood gases.  Never a dull moment...

Day 5 and Still Going

It is hard to believe that Lorelei (who we refer to as the healthy child) is still sick from whatever it is she picked up.  She has had fevers non-stop and has vomited several times.  We brought her back to the doctor today (yes, there is a bit too much knowledge that rattles around in your mind when you already have a child who is well known in the medical system), and they upped her antibiotic dose.  Her eye still looks horrid and she switches between being stuffed up to a runny nose.

Thankfully, Ethan was able to stay in therapy a couple days longer.  Hopefully that will buy us enough time for her to get over the worst of it and not be contagious anymore.  I'd really like to see the end of this tunnel soon!

Besides the company we had and the great food, my things to be thankful for this weekend are:
1) Ethan was able to stay in therapy longer and hopefully avoid catching this;
2) That Lorelei isn't any worse off than just battling a really bad viral gone bacterial infection.

MOMMEEEEEEE!

"What?!?..."

"I threw up!"

"Hang on, I'm coming."  Certainly not the 5 AM wake up call I like to get.  Okay, so come to think of it any 5 AM wake up call falls into that category, but not what I wanted to deal with so early in the morning. 

I guess I should rewind a bit.  Lorelei has had a fever since Thursday evening.  She vomited on Friday (my call at work was: "Call my mommy and tell her I just threw up and feel better now." - it didn't last long because her Tylenol wore off), and despite lots of Tylenol and Advil she kept getting fevers up to just over 40 degrees.  So off to the doctor today, she has a throat infection and an eye infection.  More antibiotics.  The doctor figures she'll be over the worst of it by the time we pick up Ethan on Monday morning.

He is doing better I've been told but has been sick each morning after his first feed.

Hopefully both kids are better soon!

Seriously?!

I got a call at work today...would you believe that Ethan is back on antibiotics for an ear infection?  We suspect it might be the same infection he had the last time he was in therapy but I don't understand why it gives him more trouble when he goes there.  He started vomiting this morning and is now on antibiotics.  Just what his GI track needed... 

On a good note, he is all systems go!  :)  I'm impressed how quickly PEG works!  I have it on good authority he is in good company when it comes to PEG use.  ;)  Hopefully the antibiotics don't mess everything up again.  He sees his GI doctor on the 18th...and I guess it is a good thing he sees the ENT on the 17th, maybe he can shed some light on Ethan's recent issues with ear infections.

Another Day, Another Med

Well to combat Ethan's issue with bowel movements, we've added Benefibre a couple times a day to his feed for about a week and 1/2.  After 48 hours without a movement, they pulled out the big guns.  He had his first dose of PEG light today with great success.  I'm just hoping we're not going to have to give him this med long term.  For those who don't know, it is a laxative that is taken orally.  The goal is that it works from the inside out.  Once he gets regular again we'll likely try to drop this med again.

Where has the Summer Gone?

With Ethan only having had a short period of good health (July) it seems there was no real summer.  We certainly didn't get much of that promised 'kids are healthier in summer'.  The warm weather is becoming a memory and the cooler weather is here and seems to want to stay.  Don't get me wrong, I prefer this kind of weather (high teens to mid-20s)...just not the germs that the full change of season can bring.

Especially since our appointment for the second opinion.  The surgeon we were referred to suggested we try casting again (which was what I was hoping for).  It would mean that Ethan goes into a cast for two months straight, has the cast removed and a second one put on right away (in the OR again since they have to manipulate his spine each time) for another two months, then that cast would be removed and number three goes on for another two months.  Once he is cut free of that cast he would be in a hard brace for about a year before they consider recasting.  That would be a total of 6 months in casts.  Honestly not as long as I was expecting, BUT (and there's always a but isn't there?) during the time Ethan is casted we would have to keep him isolated from anyone who might be sick (cold, cough, and of course anything more severe).  The success or failure of his casting will be determined by the respiratory illnesses he might catch requiring him to be sprung from the cast before the two months are up.  And this going into cold and flu season.  Now how in the world are we going to be more cautious than before?  We have a rule at the house, you enter the house you wash your hands before you touch anything.  You sanitize your hands if you blow your nose, stay away from Ethan if unwell, etc.  Now to figure out how to protect him even more...  We pretty much had him in isolation from March-July and we all know how well that went.  He hardly gets to go anywhere as it is besides therapy, hospital for appointments or procedures, the odd outing (and by odd I really mean rare).  It was suggested if he is near others who might be sick then either they should wear a mask or he should.  What does it all mean?  Likely no daycare, at least for the 6 months of casting.  Will he be allowed/able to go to therapy?  What about respite?  Do we mask him anytime he leaves the house?

Those questions aside...the surgeon also said it is our final option before surgery.  He then explained there are two types of surgery that they could do.  The first is the growing rods which we knew about.  He said there is a risk (outside of all the other risks like those that come with any surgery) that his spine could spontaneously fuse with the growing rods.  He then told us of his preferred method.  To attach titanium rods to the rib cage and pelvis in a procedure called VEPTR.  The good thing about this surgery would be that there is a much lower risk of his spine spontaneously fusing.  A side effect though is that it could break his ribs, could come loose (likely similar to a broken bone that has not punctured the skin) and it too requires multiple surgeries.  They both share that concern (the VEPTR can be every 4-6 months, growing rods are every 6) and the risks of infection.  He led us to believe that any option (including the casting) would just be a stepping stone to full fusion (I'm hoping Ethan proves him wrong!).  We now need to wait for our local surgeon to get the recommendation and decide how to proceed.  We're hoping casting and that it will be successful.  I'll definitely be looking for good vibes around that time!

His odd behaviour I mentioned last time is still a concern.  He still tenses up his limbs, grunts and pushes (or seems to) but often nothing comes.  No gas, no stool...nothing.  He is still aware enough to look around and if you touch his legs now he will bend them but we're not sure why he continues to do this.  He has been receiving increased fibre a week tomorrow, but perhaps he needs more?!  The thing is though, he is still going a couple times a day.  So we're now a bit concerned that it could be a neurological thing versus a GI thing (he doesn't scream with the tensing anymore).  I have contacted his doctors and hope we'll hear from someone soon.  We don't think it is seizure activity but do not know what it could be.

Meanwhile, it seems he's not the only one in my circle of friends whose child is doing things we'd rather not see.  Hopefully they will all start to behave and not worry their mommies so much.

Oh and Lorelei was playing with a caterpillar recently (not at home) that caused a rash on her arm.  It turns out the thing is poisonous (like poison ivy).  Of course I found out about that about 3-4 days later.  She now has just raised spots where the venom touched her but you can't see them.  Google Hickory Tussock Moth Caterpillar to see one.  I can totally see why she would have picked it up, and am trying to encourage her curiosity but suggested she not pick this one up again as her reaction could be worse next time.

Only One More Sleep

Until we go to Ethan's second opinion.  We're heading there tomorrow morning.  I'm excited to finally have him looked at but am nervous about the trip (Ethan's never been in the car that long in one day) and what the surgeon might have to say about his back.

He saw his pediatrician today and she is quite happy with how he is doing.  He sounds so much better and although his ear is still a bit pink it does not require more antibiotics.  He did develop an odd new behaviour, he was shrieking in pain this week as he tensed up and strained..but nothing came.  Then it started to come, and the odour...and an update to his GI doc, dietitian and pediatrician.  We all thought constipation and have been treating that with more fibre...and to be on the safe side we have sent stool samples today to be sure there is no recurrence of the C difficile.

One of the developmental things Ethan is doing is to share.  Mainly his soother with one of us but he will also share with a toy if asked.  He is starting to motor forward more on his walker (getting a good video has been hard).  And he also loves to play with the fridge magnets.  The horse is his favourite one and he loves to hear what they have to say...

He always skips to his favourite part, "Did you know horses wear shoes, horse shoes!" and busts a gut giggling.  He thinks it is so funny that horses would wear shoes.  We think it is pretty neat that he gets the concept of a horse wearing shoes.  :)

The Fair

This weekend we took Lorelei to the local fair while Ethan got to spend a few hours with his uncle Jon.  We started with the agricultural portion of it, it was pretty neat to see all the different animals.  Horses that are taller than Clayton (and that was just the body, not including the neck and head), many different types of chickens, goats, cows, horses, bunnies, the list goes on...

All the babies were pretty cool to see and be able to touch.  The momma goat started to bleat at Lorelei so we had her pull her hand out quickly.  The piglet's were softer than I expected and the chickens were fluffy soft.

We then headed into a building and watched a reptile show and checked out the reptiles after.  We learned that most people have no clue about local endangered species.  So I looked it up.  As of November 2010, there are now 631 endangered species at risk listed in our country.  They also taught us that birds are now classed as reptiles.

See that?  Lorelei had no fear and went up to touch the Reticulated Python and Alligator.  And drum roll please....I actually touched them too!  It took me three tries to touch the snake, but I did it and then touched it again.  It felt much different than I expected.  The alligator was so rough it wasn't like you were touching an animal at all.  Lorelei also touched a lizard later but I did not capture that one on film. 

The former is the only way I hope to ever see Lorelei in a police car!  Lorelei's favourite part came next...

She really enjoyed the rides.  Due to limited tickets, we sent her on the first ride alone.  I think I was more nervous than her.  I tracked her the whole time.  She is the little one two above the tent/ride that goes across the fair.  Eeny, meeny, miney, moe won Clayton the chance to go on the Ferris wheel.  We ended our visit with a colossal onion, funnel cake and fries (can anyone say too much grease?)...and Lorelei wanting to ride more.

Ethan still has his ear infection and his antibiotics have been extended.  His neurology appointment went really well, the neurologist is quite pleased with his progress.  He has a new switch to help give him a 'voice'...and he still has no daycare spot.  I guess it can't all be good news all the time.  I'll settle for most of the time.  ;)

Belated Update

Well, we had a really great July!
Unfortunately, in early August Ethan got sick with a cold.  :(  It started with a whole lot of vomiting, some even projectile forcing me to go to the clinic with him.  I wanted to be sure it wasn't brain related.  Ethan typically does not projectile vomit unless it is more than just a cold.  The doctor there seemed pretty sure his brain was okay and thought it was just Ethan fighting the cold.  The good news is that we have managed to stay out of hospital.  :)  I'm not sure if it is his increased calories or if he was just better equipped to fight the cold...  It took him two weeks to clear, and now he is sick again with an ear/throat infection.  Again with the vomiting.  :(

We have heard back from Ethan's orthopedic surgeon's office.  Ethan will not be casted at this time, and the doctor does not want to do anything until Ethan is seen by a doctor he referred us to in a larger hospital.  We are now desperately awaiting an appointment time to see this new orthopedic surgeon.  It is mainly for a second opinion and likely a bit of 'is this the best way to proceed?' kind of appointment.  The doctor seems to have a lot of experience and from what I understand specializes in non-fusion ways to correct the back.  Their referral appointments are booked on a case by case situation and the assistant of our current orthopedic surgeon has asked them to expedite it and is trying to stay on top of it for us.  Long story short, for some reason Ethan's referral did not go in and it had to be resubmitted, we now have an appointment for later this month.  The waiting is the hardest part, especially knowing the current state of his back.

Last month Ethan got his new set of wheels and I finally took some pictures and got them loaded onto the PC. 

We had to have it adjusted because he kept scootching forward, these photos were taken on the way to the appointment.  We're still trying to get used to the new 'stroller' (it is a bit harder to load/unload), but Ethan seems to like it.

It's September, fall is near

It's Lorelei's favourite time of year

Boys and girls make new friends

Teachers lend a helping hand

Lots to learn and so much fun

It's back to school for everyone!

(Revised from JK/SK readings)

Lorelei started Grade One this year!  She is very excited and has had a great start thus far.  Upon request, we took some photos to document her first day of school (as mentioned I'm a bit late updating...).

I don't think Lorelei was too thrilled about having her picture taken while she had breakfast.

Getting ready for school.  Dressed in her new outfit and new backpack Lorelei was ready for her first day of Grade One.  She even got to wear her 'fancy' shoes.  She is such a girly girl!

It took some persuading but she put on her coat.  September has been mostly chilly, but there have still been some nice warm days.

It is amazing how fast they grow!



A Great Example

One question we often get relates to Ethan's quality of life.  Although things are not easy, I think it sounds a whole lot worse than it is to live (okay, so some times it is really overwhelming I admit...but you get the point I think).  The following video was shared with me, and I think Can do (although not human) best illustrates how quality of life is very subjective.  http://www.dogwork.com/kan6/

Something Neat From our Busy Day

To end off our busy day, I'd received a pretty neat link from my mom.  I had intended to include it in the last post...but I would say it is likely good enough to stand on its own.  I really enjoyed this song, and thought I would share it.  If you have never heard of this band before, I highly recommend listening to and watching the video before reading the information posted below.  Enjoy!  http://everyaustraliancounts.com.au/rudely-interrupted-gets-behind-the-ndis/

Crazy Day of Appointments...

The Tuesday after the long weekend was a busy one for Ethan and I.  We left the house at 8:30 am to have his existing stroller tray adjusted, then off to get his new set of wheels.  Since it was his first time getting them, everything had to be adjusted and the appointment took almost 3 hours.  After a quick stop at Clayton's work (near the hospital) to drop off a custom seat, we went to his neurosurgery appointment. 
The results of the MRI were in...the good news is that the Dandy-Walker cyst is now fully communicating.  When he required the emergency surgery the cyst had split into several chambers which is likely why there was such a build up of fluid.  Those chambers are all gone now (the surgery was a success).  During the surgery the surgeon had opened everything to flow towards the shunt.  The MRI also showed that Ethan's ventricles and shunt are doing well.  :)  Now for the other cyst - which the surgeon and I have dubbed 'Cysty' because it is not part of the Dandy-Walker nor is there any other condition name that it fits under.  So Cysty was larger in this MRI than it was in April (post surgery) but smaller than it was when it was first detected about a year ago?!  I was told it could be that the size of the cyst changes, but we would not know if it is a daily thing or an over time kind of thing, but obviously it has changed.  At this point we are going to wait and do imaging again in 6 months time.  The surgeon said it is MAJOR surgery to try and remove a cyst in front of the brain stem with several risks...so the best course is if we do not have to do anything.

Then off we went to get Lorelei from her before/after school summer program.  I unloaded Ethan from the car into his new wheels and pulled the canopy over his head to protect him from the rain (not a lot of him was exposed).  On our way in to get Lorelei some little kid yells to another boy in the play yard (keep in mind these children are 6 years old or younger), "Hey Ethan, look at this weird looking baby!"  I could not believe my ears.  This from someone so young.  I had no idea how to respond.  I was shocked!  I've noticed such negative behaviour from adults and kind of expect it from older kids but never from one so young.  I don't think I'm ready to deal with that just yet.  I heard the teacher say she was going to go deal with it as I was entering the school.  In case he heard and understood, I leaned down to Ethan and told him I had no idea what the kid was talking about, he's no weirder looking than any other kid.

By the time we got out, the teacher said she did not know if I'd heard what was said (I told her I did and asked, "How does one respond to that?") but she wanted the little boy to apologize.  She said she'd told him that, "Maybe he was born like that.  Maybe his legs don't work very well.  You might have hurt his or his mommy's feelings."  I'm not sure if he told her it was that Ethan wasn't walking that he found weird or if she was just guessing at what might have prompted his comment.  For all I know he could have thought that Ethan was the biggest baby he'd ever seen in a stroller.  She told him how Ethan is Lorelei's little brother.  He seemed bothered by what he'd done but did not out right apologize.  She again suggested he ask questions as I would likely answer them...and I said to him, "How about you just say HI Ethan, I think that would be nice."  With that obligation met, he was there a little for me to say that Ethan spends a lot of time in hospital but is otherwise like most kids and went off to play.  The rest of the play yard had all gathered around the chain link fence and all were saying hi (and eventually bye) to Ethan some in anticipation of him responding.  I told them that he doesn't speak, but that his smiles said he was happy to see them.  They seemed very curious about him.  This is more the behaviour I have come to expect from children.  The innocent questions, curiosity and genuine interest in talking to him (sometimes touching as well).  I figure it was a learned behaviour that made the boy make the comment to begin with...he is the only child in the class I noticed with glasses and one of only about a handful who is not Caucasian.  I hope it wasn't anything said to him as I'm sure it hurts, but maybe something he'd heard said of others.  That still sucks but maybe now he can teach them compassion too...

The End of Some of our Waiting...

July was a good month for us!  :)  We went the full month without any admissions to hospital (touching wood) and although I'm excited to say that, I also find it kind of sad given we'd spent so much time without an admission before last June.  July has been a busy one for Ethan (and by extension us).  Because of the lost teeth, Ethan was referred to a periodontist and last week we had our follow up appointment.  After consulting with the pathologist who analysed Ethan's first few teeth that fell out, he thinks that the cementum (it is what keeps teeth in) was likely affected by the chemotherapy Ethan had as a baby.  Only time will tell if his adult teeth are similarly affected or if it was just the baby teeth.  He also did not think Ethan was experiencing any significant bone loss and felt that was not a worry.

Meanwhile, Ethan had a bone density scan last week from which we are still awaiting results.  Our orthopedic surgeon is waiting for the results of the scan before proceeding with planning Ethan's next cast.  A couple weeks ago we got to meet Ethan's new physiotherapist in our home and she came by with different equipment for him, as he outgrew some of the equipment.

Tomorrow, he gets his new wheels (and seating) and we find out the results of him brain MRI.  We'll end the week with an adjustment to his back brace.  The orthopedic surgeon has asked me to increase his time in the brace from about 2 hours per day to 8-10 hours per day.  We just started putting him in the brace at bedtime to meet this request.  Ethan has grown a lot since the brace was made, and in the past month or two has gained some weight so the brace no longer closes properly on the bottom.  We're hoping to have a longer strap put on until we know what we're doing regarding casting, etc.

A Very Happy Girl!

Lorelei celebrated a great birthday, both on the day of her actual birthday and at her party a few days later.  We decided to celebrate at The Little Gym this year and she ended up with 19 friends that were able to join her.  The party was large, but I think overall everyone had a great time!  We had wanted her to have a day that was all about her, and it ended up she had two such days. 

For her birthday dinner Lorelei wanted to have McDonald's and then we surprised her with an ice cream cake.

Of course family and friends alike spoiled Lorelei for her birthday.  And despite this posting not being about Ethan, he too benefited from Lorelei's birthday.  I had to post the following picture of his newest toy and his reaction to it...it was just too cute!  Thanks Omi!

Back to Lorelei - this year we decided to use some of the points on one of our cards to get her a Nintendo DS.  We figured in addition to it being something she would really enjoy (she's been asking for one for a while), it could come in very handy for any appointments she needs to attend for Ethan.  She was obviously stunned by the present as she asked, "Did you guys really get a DS for me?"  Although she really loved that present, it didn't stop her from enjoying each one she opened afterwords including stopping to flip through a book before moving on. 

Since I did not ask anyone for permission to post their children on my blog, I will not include any of the party, but here is one of the cake...

...and one of her when she was taking a break to pose while opening presents later at home in her fairy halo.  During this time too, she stopped to read a book before moving on to the next present.

I still can't believe my baby girl is already 6 years old.  Where has the time gone?

A Day to Celebrate...

Six years ago today, we eagerly welcomed Lorelei into our lives.  As mentioned around Ethan's birthday, my water broke at 3 am and we arrived at the hospital at 4 am (the same times 2.5 years later with Ethan).  Only with this trip, my mom joined us...and of course they both had to shower and grab a coffee before we could leave (Seriously? My water broke, we should get in!).  Our car had been acting up and we had no lights (except high beams) for the drive to the hospital.  We did pass a police car, but thankfully did not get pulled over.

Lorelei just shy of 1 year old, in Alberta.  Notice the yellow tag?  It was from her hospital stay in Alberta.  She caught a GI bug and required IV fluids.  It was a scary period for us (not being used to hospitals or children in them).  It took several tries and a fair bit of extra money but we eventually got to fly home.  She was still a bit sick when we came home but recovered well enough.

Once in hospital, they hooked me up to the monitors and let me pace a bit before they decided to induce me because I was not progressing in labour.  I remember it being the worst feeling, it felt like I was going through all the labour pains but there was no real change in the actual progress of the labour.  A long 25 hours, an epidural (after 12 hours and their promise the baby would not come that night) and two emeses (sorry mom) later and we were thrilled to hear the cooing of our new baby.  She made the sweetest sound when she was born.  All around us we could hear the screams of babies (and in some cases their moms), but our little girl came out cooing.  We later found out you really want them to cry to clear their airway, when she threw up the next day or so.  It was exciting and so new to us...the lack of sleep as we settled into life with a baby was difficult to deal with at the time.  She came home before we named her as we could not settle on a name, but within the next couple days we decided on Lorelei.  A beautiful name with a beautiful folk tale for a beautiful child.

Just before her 2nd birthday, Lorelei was helping daddy build a deck.

Here she is hanging out with her baby brother, just before her 3rd birthday.

Just after Lorelei turned 4 we brought her and Ethan to the park.  It was Ethan's first time at a park.

Now six years later she is still as chatty as ever and will be entering Grade 1 in September.  She has been in mixed ages care (up to 12 years old) and wants to shed a lot of the 'baby' things from her life.  They grow up so fast and it is hard to think of her as growing up.  She will always be my baby girl!  And I want her to hold on to as much of her youth as she can.  There is always time to grow up later!

Last year she was delighted to celebrate with her Nan & Pop.

On a side note, Ethan did great at his MRI today and we got home earlier than expected so we were able to have dinner, cake and presents with Lorelei.  :)

Sometimes Things Just Come Together...

(Quickly touch wood!)  Things seem to be really coming together for Ethan right now.  He is stronger physically than he has been in a long time; he is in good health (except his odd poops); he is in good spirits; he passed his preadmit appointment today; the GI doctor was able to check out his bottom and suggested something to treat the sores he has right now, he doesn't think Ethan is still c difficile positive (but we have yet to test that part); and as we were heading out of the hospital today they came to me to see if we would be able to fill the 4 pm MRI spot for tomorrow.  Life is good right now (again touching wood - we've become a bit superstitious when it comes to his health), and I am excited for him.  On Friday we see his orthopedic surgeon to see how we will proceed regarding his scoliosis.

Update Since Hospital Stay

Ethan was discharged from hospital on Sunday, June 26.  He came home still somewhat congested and still having active signs of C difficile.  The morning before his discharge, we noticed he'd lost a tooth.  They did some blood work and his results came back okay.  But on Wednesday, he lost another tooth...and then another.  In total he is now missing 6 teeth.  I brought him to the dentist last week and new x-rays were done.  We know he will be losing another two teeth soon as they no longer have any roots to keep them in.  We're not sure if he is just swallowing them or what is happening with them as we have not seen any of the teeth, just the hole that is left behind.  The dentist also thinks there might be some bone loss happening, and hopes to consult with a bunch of people to see if we can find a reason for his rapid resorption and to try and stop it.

He has been home over a week now and is doing well.  Without the dirty details his stools have changed and we think he is well on the way to recovery now.

Auntie Ashley and Pepere came to visit over the long weekend and I copied out the pictures Auntie Ashley took (or let us take with her nice camera).

On her first day of summer vacation, Lorelei went to the before/after program and they celebrated Canada Day (note her tattoos).  On Canada Day, Lorelei had a busy one.  We started the day at our neighbour's house with a pancake breakfast for those who live on our street.

The balloon Lorelei is playing with came from the pancake breakfast.  Once they had tidied up after the event they brought her the balloon.  (I thought that was awfully sweet of them.)

She then spent the rest of the morning outside with her Auntie Ashley and Pepere.  The afternoon was spent celebrating her friend's 6th birthday and she was to join us for fireworks that night so I had her take a nap against her wishes.  When she got up from her nap she did not feel very well and put herself back to bed.  She essentially slept through to the next morning and missed all the festivities.   I think she may have had too much sun as she was feeling fine the next day.  Luckily there were more fireworks near our house on the 2nd that she was able to watch and we had front row seats.  I was impressed that the noise did not startle her.  She loved it and journaled about it later at home.

Although he looks serious in the picture above, Ashley took consecutive pictures of him so she caught him when he'd closed his mouth to swallow.  He is busy watching TV.

The above and below pictures are to show how bad his tooth loss is becoming.  The two teeth you see above, are the two we know do not have any roots left.  :(