Trying Our Luck on Facebook

As some of you are well aware, we are not on Facebook (I know how shocking there are still people out there that don't have FB accounts).  Mom is on FB however, and has posted Ethan's information in an attempt to win a specialized bed for him.  The winner will be chosen by the highest number of votes (kind of like a popularity contest)...none the less, we are currently in 3rd place with 832 votes.  You can vote daily and there are only 28 days left to vote.  We are thrilled with the response mom has gotten thus far and I thought I would try to help things out by posting the link here. 

www.facebook.com/BedsbyGeorge/app_192229990808929 

If you haven't already done so, and are willing to participate (I understand first you have to like the company and then you get the option of voting - but think that is just the first time...after that you can just vote daily) please drop in to vote for Ethan.  You may notice there are two Ethan's vying for a bed...ours has the following picture of Ethan attached. 

He has pretty much outgrown his crib (and the hospital ones as was pointed out several times during his brief stay) and this would be a great option for him at home.

Lucky Number 13...

Waiting for surgery.

Thankfully, although his surgery was cancelled in November, Ethan was able to get a time on December 4th.  When we went in to surgery, his hydrocele was not really noticeable but the surgeon decided to proceed anyway.  Surgery went well and in recovery she told us she was happy she chose to proceed with surgery and that it wasn't acting up as the anatomy of the hydrocele was different.  During his time in recovery, Ethan had a dip in his oxygen saturation numbers and was not able to keep a steady pattern they were happy with so he got admitted for the night.  For the first time they put us in a semi-private room.  When Ethan was a month old, they moved him from a ward room to a private one as he had the EVDs and chemotherapy.  We were quite nervous about what he might pick up as the floor was full and most of the doors seemed to have the precaution signs on them indicating there is a lot of germs going around!  We saw several nurses we got to know in our 2010-2011 stays and everyone was amazed at how much he's grown since they last saw him.

Ethan behaved during the night (although because they ordered the monitor on him and he tends to breathe shallow his alarm rang off a lot as apnic), and was able to come home Wednesday morning.  :)  Although the site is swollen, he was in pretty good spirits.  We are continuing to give him Tempra to ease the pain as you can see he is quite sensitive too.  Because of the location of his incision, we are not putting him in pants much and are not to use the back brace for 4-5 days so it can heal.  Last night and today Ethan had a rough go of it not sleeping, coughing lots, throwing up and generally in pain.  Hopefully he has a good night tonight!

I believe I've mentioned it before but at our local hospital, you can take part in a program that allows you to enter the OR while they anaesthetise your child for surgery.  I have been going in with Ethan since we started his serial casting.  In order to go into the OR, you need to put on scrubs, shoe covers, mask and hair net.  Clayton usually mocks me when I'm all dressed up and this time he grabbed a couple pictures (as you can see, I successfully blocked one of them).

Catching up

In October we also saw Ethan's orthopaedic surgeon and he is happy to keep Ethan in the back brace and revisit his spinal images in January to see if we need to move towards surgery.  Each time we wait, that allows Ethan to grow a bit older, bigger and stronger and reduces the minimum amounts of surgery he will require until fusion.  The surgeon said that in a year and a half, Ethan's back has only progressed a few degrees so although it is a severe scoliosis, it isn't changing rapidly right now.

In November we followed up with the general surgeon about Ethan's hydrocele.  It had reduced leading into November but started to act up again just before the appointment, which was nice as it allowed her to see what was going on.  She said that since Ethan is shunted, there will always be extra fluid and that his hydrocele likely will never self correct.  She planned for surgery on November 20th.  I then brought him to where he goes for therapy and he came home with a cold.  :(  It lasted about 3 weeks and meant he did not have surgery on the 20th. 

He also saw his neurologist last month who was quite pleased with his progress.  I had brought along the iPad in case Ethan got bored of back to back appointments and he was having a grand time with it, doing what he does and impressing everyone with his ability to work the iPad.

Lorelei too had an exciting day in November...she became a Brownie!

For anyone who remembers...she is wearing a vintage uniform (circa 1982).  She is not the only girl wearing a vintage uniform there is another girl also wearing one from her mom's youth.  The blue sash is so that she can collect her own badges as removing them from the dress would likely leave lots of holes and it might not hold up so well.  She seems to be enjoying it.  Just last week we toured a local fire station and they got to see a truck leave on a call (and come back to finish the tour).

This is Halloween, This is Halloween...

The night before Halloween, we sat down to carve our pumpkin.  Lorelei chose the stencil this year and helped de-gut the pumpkin and pick out seeds.  We took a bit of time for sensory play for Ethan and he didn't seem to mind it very much.

The photos are not great quality but Ethan was playing with the pumpkin guts with us and ended his session with...of course, dumping the bowl out (last 3 pictures).  I baked the pumpkin seeds again this year and they were pretty yummy!

Halloween worked out pretty well this year.  I got into the spirit again for the kids and painted my face before heading to work.  I had bought a blue wig on discount and figured I could use it for a specific costume, but saw an image online that I thought was pretty neat and I tried to copy it instead. 

I'm not sure if you can make it out, but it is a fish drawn on one side of my face (with our lips shared), kelp down my neck and bubbles on the other side.

Once we got home from school I got Lorelei's make-up done and she had to wait to go out because Clayton was working so she helped hand out treats.  Lorelei went as a vampire this year.

We were able to get Ethan into a costume just for photos without him protesting.  Which was surprising since he was too big for the costume and the last couple times he wasn't so into it.

Then to end the night, we went outside to grab pictures of the three of us dressed up. 

Surprisingly, Clayton hasn't been much into dressing up for Halloween...I thought it would totally be something up his alley.  I guess we needed someone to take pictures for us.  But while we were waiting for Trick-or-Treaters to come by, he was a good sport and let me try my wig on him.

Lorelei's pumpkin from school and Clayton's masterpiece.

Back to Searching

Oh so much has happened since my last post and I will try to catch up including pictures from Halloween.  But I'd like to start with the last week.  Things have been quite interesting around here...

I have learned a lot about myself...  Some people already know about what has been going on and I bet mom is thinking I'm obsessing again, but the events had a huge impact on me.

As most people know we've been searching for an accessible home for over a year now.  We thought we'd found the perfect one; a house that would have met the majority of our needs. 

Then came something suspicious.  A rumour.  And then the rumour was repeated by someone else.  There did not seem to be anything to substantiate this rumour and we thought perhaps it was just hearsay or a misunderstanding and something that we could live with. 

Then came more things that just did not add up.  Calls went out to all kinds of organizations and everything seemed positive but still the stress would not leave me.  Despite all the 'positive' things I was being told there was just this feeling that gnawed at me, driving me crazy, making me lose my appetite, sleep and focus on just about anything else.  It grew to the stage of giving me anxiety.  I started to wonder if I was losing my last marbles since there was just something I couldn't put my finger on.  We researched, I did a whole lot of research...let's just say there are a lot of things I've learned that I would rather not know much about.  Sheer panic was running through me, I couldn't even look at pictures of this house that I initially thought was so great. 

Suspicions were confirmed and I almost burst into tears (with relief at finding out when we did).  I just could not put my family through this. 

Over the week I learned that I have a strong intuition, that I need to trust this intuition and that my convictions are also very strong.  Once it became less likely to just be hearsay, I knew there was no way I could live there!  I still wonder why we thought we could live with it when we figured it was just a rumour...sometimes though rumours stem from truths.  So as you may have guessed, we won't be moving anytime soon, but we feel good about our decision. 

What the ???

Okay, I must admit this might be one of those posts that embarrasses Ethan when he is older and I won't be including any pictures with it either.

I'm going to start by saying that when Ethan was born, I was surprised at how many crevasses a boy can have in the diapering area.  I thought it would be easier than it was with Lorelei...but boy was I wrong!  Add to that he had an inguinal hernia repair when he was really little on the right hand side and I figured the worst of it was done with...(I'm going to totally overlook puberty because that scares me right now).  Well, we just got home about 1/2 an hour ago from a 6.5 hour visit to the ER.  Ethan had developed some strange symptoms which prompted our visit and he came home with a diagnosis of hydrocele.  To limit his embarrassment, I will just tell you that it is similar to a hernia.  What it does mean for him is that we're to consult with surgery in the next two weeks and this puts a whole new surgery in his future to repair the hydrocele.  On a plus side, it doesn't require emergency surgery and allowed us to come home again tonight. 

During the imaging they did to confirm the diagnosis, they captured part of his spine in an x-ray...boy does it look bad without the brace on!  We meet the orthopedic surgeon next Friday to see how he feels things are progressing...

August Outing

This is quite late in coming...and I must admit mom has been very patient waiting for this update.  She knew that Ethan got a sun burn and it had something to do with something we'd done with him on a weekend.  But that was the extent of what she knew...she did ask a couple times about the update but I think has resigned herself that these things sometimes take time.  ;)

Honestly, I've been excited to blog this post but things have been quite busy here and I never seem to get enough time to sit down and write.  As it is this took several tries to complete.

The end of August we took the kids to a safari park a couple hours away.  You read that right, we actually took Ethan somewhere that didn't involve medical care, therapy or something else local!!  I must admit I was a bit nervous to bring him...but my main concern was more how he would tolerate being in his wheelchair and car seat for so long.  A lot was hinging on his success...if it failed, Clayton would get to say "I told you so!" and we would likely not try to take him elsewhere.  If we succeeded...that would open up more doors for him!  I won't keep you in suspense, he did GREAT!!!  I think he had a wonderful time and only got frustrated at the end of the day, but I think that was mainly because the sun was shining right in his eyes and he couldn't see the elephant attraction we were watching.  After that we packed up and went home.  He even tolerated having his brace on for a good while.  He did sweat in it, but didn't complain!  You may notice the canopy on his wheelchair is a bit low, we have since fixed it to be a better fit...but we did not want to leave him uncovered.

We started the day with a bit of a negative...that in my mind ended okay.  While walking by a little girl (likely around Lorelei's age) I heard her say to her father, "Look at that funny looking boy."  (Or something to that effect, my memory has not fully retained this slight against my boy.)  But Lorelei turned around and said, "He has special needs, and he's my brother!"  She said it as proud as could be and almost moved me to tears.  I told her how proud I was of her to have said that and stood up for her brother!  :)  We did get many more stares but that was the only time something was said loud enough for us to hear.  It got me thinking...really, are wheelchairs that uncommon?  It wasn't just the kids who stared but adults too.

When we arrived, Lorelei headed straight for the water park to cool off a bit and as she said it would allow her time to dry up before we left.



We then watched the elephants make one of their daily trips to the watering hole to cool off.  Unfortunately, I'm not sure Ethan got to see much of them since we were so far back and there were a lot of people blocking the way.

Next we boarded the bus for a tour of the grounds.  It was neat to see his wheelchair tied down on the bus, we'd never done that before.  He enjoyed watching people move around on the bus to try to get pictures, but I'm not sure how many animals he actually saw.  Every time we would try to point one out, he would look at us instead.

If you notice, there was an ostrich that came right to his window and hung out there...I think he saw it make its way to his window but when Clayton tried to point it out he turned away and did not look back before the bus had moved on.  :(

We took in all the different shows they had to offer.

And I grabbed some candid shots...

 

It was pretty neat at the one attraction, there were a couple birds that ran into a pen that Ethan saw and he kept watching the pen for them to come out again (as seen above).  I was so happy he noticed them.

 

 

Lorelei went into the petting enclosure and pet goats, llamas and deer.

Not to be Left Out

Lorelei too has been losing some teeth lately.  Bet you can't guess which ones...

It is crazy how quick those two came out.  She wiggled one out at bedtime and then the following day she touched the other one and it came out.  The tooth fairy was very kind to her.  (On a side note, I should remind her she has forgotten some of Ethan's teeth...)  Lorelei can be very optimistic at times.  The bright side for her is that now she can make a cute bunny face.

A Great Week

In mid-August Ethan attended a summer camp for the first time ever!  It was a gym and swim camp which started with crafts and he had a great time, which pleasantly surprised us.  I wasn't sure how much he would enjoy the crafts and gym portion...but then had a hard time picturing how they would adapt the gym portion.  It is really neat what is out there...  I went with him to the camp to do his feed/meds and so got to observe much of the camp.  The downside to his feeds running as long as they do is that he wasn't able to get into his walker much for the gym portion. 

Ethan doesn't often have a lot of room to roam around in and I think he was enjoying the freedom of movement at camp.  The door knobs were of particular interest for him on the first day.

Ethan (and most of his friends at camp) enjoyed the pool session the most.  It was Ethan's first time back in a pool in about 2 years.  At first he was just getting used to the different sensation but started to feel more comfortable on day two and just kept going all week; splashing and kicking his feet.  He had a wonderful volunteer helper working with him.  The final day of camp they had a treasure hunt with a pirate theme.  Ethan's tattoo stayed on for a long time, until I finally removed it - which surprised me in comparison to Lorelei's tattoos...I guess that is the difference when you use your hands and wash them a whole lot.

 

It was a really great experience for Ethan and I hope he can do it again next year!

 

That week was a rough one for us.  Besides illnesses that arise and any serious medical issues, which I think we typically handle in stride, the hardest time for us is when we are sleep deprived.  For about a two week period Ethan wasn't sleeping well through the night, waking for hours on end and not always going back to sleep.  He pulled at least two of the latter nights the week of camp and that pushed us over the edge.  It was later in that week that we found out what could have been contributing to it...

 

 

 

If you look really closely you might notice that his lower gums have whitish spots on them...  Ethan is growing his adult teeth!  I suspected this the day before his dentist confirmed it at a routine follow up appointment.  It has been almost two years since Ethan first lost a tooth.  But what the dentist went on to tell us, surprised even me!  Ethan has pushed through his bottom two 6-year molars.  As the name implies they are typically grown later than 4 1/2 years old!

 

Thankfully, Ethan rounded out the week with a couple good nights of sleep which we thoroughly appreciated!



Continuing with Good Appointment News...

Ethan's oncologist has decided that our follow up appointments will be pushed back from every 6 months to annually.  Our next appointment of the month was with Ethan's Orthopedic Surgeon and he is happy with the correction we're getting with Ethan's new brace, which means we will be able to hold off on casting/surgery.  We will see him again in October to be sure the brace is still keeping his spine stable. We have managed to increase his brace time to 7-9 hours a day and need to work towards the end goal of 18 hours per day.  His final hospital appointment in July was for a bone density scan.  Although the official results are not back yet, it seems that his bone density is improving...which is great news especially since his weight bearing time has been cut in half from December 2011.  Ethan's OT brought us a bath seat to try and Ethan seems to enjoy it.

Ethan is employing his sleep deprivation torture techniques again, and it slowed me down...and I missed a great photo opportunity.  The other day I looked at him and he had the bottle from his feeding pump off and by his mouth while his feed was running.  I guess he wanted to try having it by mouth again.  ;)  Just after I got there he tossed the bottle and managed to put more air bubbles into his line that I then had to clear.

Lorelei has also had a busy summer including a two week art camp.  She had her gallery show the end of the second week.  She was pretty pleased with her progress, and we think she did a great job too!  Part of her show day was to have one of us do a craft with her describing the technique.  Since part of the craft was to dip your finger into glue, I volunteered Clayton to do it.  (Someone had to be available to take pictures too. ;))

The start of this month saw another statutory holiday.  Lorelei, Clayton, Uncle Jon and I headed to a nearby beach.  In the 12 years Clayton and I have lived here we've never really made it to the beach.  Now that we've scoped out the area, we hope to bring Ethan sometime.  There were lots of waves and Lorelei had a blast!

I think Clayton loved being at the beach again too...although his one complaint was that it doesn't smell the same as the ocean...  He's already planning our next visit.

Where Clayton & Uncle Jon first set up the umbrella they disturbed some old drift wood with a family of frogs.  I think they had some lasting anger issues towards us as they kept jumping at me (we'd moved the umbrella about 6 feet away)...but it could be they liked the way I shrieked like a little girl when they got too close. 

In the end we had one that burrowed under Clayton's sandal and we were able to co-exist during our stay at the beach.  I was the only one who managed not to get burned that day. 

Surprise Appointment News

So, something weird happened today...something that generally doesn't happen...  Ethan dropped a specialty!  We had recently picked another couple up and both sounded like they planned to keep him on longer, but today his Immunologist said his blood counts again show a bit low on the fighting viruses part but that it isn't low enough to explain why he gets sick so often.  She thinks it is attributable to other things going on for him.  She will do up her letter stating that if he catches specific viruses then she will get involved again.  But from her point of view he does not have an immune issue.  (We're still no further ahead on how to keep him healthier.)  The good news from the appointment is that he does build antibodies and does it well with the vaccines, etc he's had...so she thinks it stands to reason that he should be able to build antibodies to viruses unless they have mutated.

Happy Birthday!

Lorelei celebrated her 7th birthday this weekend and celebrated for the whole weekend.  On Friday night she got to pick dinner (McDonald's of course) and she and I watched a movie together.  On Saturday her uncle came to visit and she got to start early with her present opening.  She saved Ethan's present for the last "because he's the best"...I'm guessing from her reaction that she thought he gave the best present too.  ;)

She then had a Skype conversation with Omi as she opened her presents from Germany.  She put the Playmobil sets together right away and has played with them just about daily! 

Never one to leave the other child out, Omi sent a couple thing for Ethan to open too.  He took longer to open them, tossed the maraca but played with the truck for a little bit which I was able to capture on film.

Lorelei rounded out her evening with a tiny cake and a night in the tent with Daddy.  But the air mattress deflated through the night and they were in the house before 6 am the next morning.  Neither Ethan nor I noticed them returning to the house as we slept in our beds.

(The plates are dessert plates not dinner plates!)

The next day she had her party with friends.  The party was smaller this year and I think it was the perfect size for her to interact with everyone.  From what we saw, they all really enjoyed themselves!  It was a great success and Lorelei was thrilled to open her presents at home later in the day.  Her friends were very generous and she loved every present!

More Appointments

Since Ethan came out of hospital he has been keeping me quite busy with appointments this month!  We had an appointment with Genetics.  She took his history from when she last saw him (at a couple months old) until now.  She feels very confident that he does not have the syndrome I was questioning but is on the search to see if he does have a syndrome we can identify.  It may just be he has his own (Cutest Boy In The World - I'm telling you!), but given he has multiple things going on that typically means there is a syndrome of sorts.  She sent us home with a requisition for blood work and will let us know if anything turns up.  If there is a question that it could be genetic, Clayton & I may be asked to have our blood checked as well.  But there is a high likelihood it will come back inconclusive.  She took more pictures of Ethan's tumour sites and his long fingers.  She discussed his skin and anything else she thought of during the appointment.  In her file on Ethan she had photos of him when he was younger, it was really cute to see him in those photos and that was what really prompted me to get his hair cut.  I've been talking about since late last year and am really happy we finally had it cut!  It is so nice to see his ears without hair hanging into them.  :)

His new brace came in the day he was admitted so we had to wait a bit to have him fitted, and then it took me even longer to get a picture of him in it.  But here you go, the new lighter brace (than the cast anyway) and hopefully the salvation for his back for a while to come.

He was swatting me out of the way, I was blocking the TV, but you can see how it fits around him in a very masculine fashion.  ;)  As you may notice as well, we're continuing to put his casting shirts to use. 

We had another saliva study done that shows he refluxes a lot (but it didn't seem to go all the way up to the lungs), and we did not notice anything in his lungs.  The results of this study will be provided to us in September when we see his Respirologist again.

He had his eyes checked again and shows a wee bit of improvement in sight but did not cooperate with the images for the whole appointment.  She figures it was more a case of him being done participating than a vision issue.  She had played Dora at the start and I suggested next time we wait until the end of the appointment to test his distance vision with Dora as he likely wanted to continue to watch TV instead of look at the images on the cards she had for him. 

We tried to fit him with a bath seat, but the options provided to us just didn't work well for Ethan/our bath.  We see the OT again next week and hopefully she'll have a more suitable option then.  We still have several more appointments to round out this month.

Happy July

A couple years ago, we got into big trouble with Lorelei for not taking her out to see fireworks on one of the many occasions people let them off.  Then early in 2011 we were admitted to hospital during one such occasion and since they have such a nice view we got to see fireworks set off throughout the city.  I'm told the ride home was lots of fun too as there were fireworks still being let off.  I took her to some fireworks last year but since it was storming we had to watch them from the car.  We had front row seats of course (not many people had ventured out when we pulled up) and I kept the windows down.  It was really kind of neat to watch the lightening strike between fireworks.  It was kind of like Mother Nature was contributing to the celebrations.  Recently Lorelei and I went to watch the fireworks again at the same location as last year...but with beautiful weather we sat in camp chairs with friends.  We travelled there with friends, met up with some more and then found a couple more.  All of them were Lorelei's age and they had a blast playing while waiting for it to be dark enough for fireworks.  Lorelei loved them and kept trying to creep closer and closer to them.  I find it somewhat amusing since at her age, I really wasn't a fan of the noise they made.  The sparklers were more my speed.  But she loves herself some fireworks!  It was a very good show that lasted almost 1/2 an hour.  I wondered if Ethan would be a fan of them, but he was long asleep by the time the fireworks started.  Maybe that is a goal for a coming year...

On the following stat holiday we met up with friends for breakfast and decided to go for a stroll.  Ethan was with nursing that day so it became a Lorelei, Mommy & Daddy day.  The trial we walked on out would be great to bring Ethan on, either in his walker or in his wheelchair, provided it wasn't too sickly hot as it has been lately.

It was pretty neat.  We started the walk with Lorelei finding a large moth, "the size of a cookie" she called it, then we saw a family of raccoons climbing a tree to their hollow and then a gaggle of geese.  "Watch for geese poop!" Lorelei warned cyclists/walkers going by.

We had Ethan's follow up appointment recently from his hospital stay and he got a clean bill of health.  :)  The same day he also got...

his first haircut!  As you can see it was getting pretty long.  He did really great and only got antsy at the end of the cut.  It looks much nicer, I will try to get a better picture of it and post shortly. 



Home Since Monday

Evening!  Ethan was discharged and we were home by 8:30 pm.  Both the MRI and CT scans came back stable from previous images.  Which is good but still raises a lot of questions.  We have several follow up type appointments next week and the fitting for his new brace.  I got a call today while at work that Ethan was throwing up again, but despite being sick four times he is still in good spirits and has lots of energy.  We're just giving him pedialyte right now, but hope to restart calories tomorrow morning.

While in hospital I captured one of my favorite pictures of Ethan.  I love how he's holding on to the crib while sleeping...he didn't even wake up when I took the picture.  :)

Still Admitted

...but Ethan seems to finally be improving somewhat.  He was more chatty today and awake for a good while.  It seems after many tests, his brain is fine.  WHEW!!!  But his neurosurgeon wants to keep our December MRI date to keep a close eye on Ethan's cysts.  Although they are stable they are now questioning their make up - which was a total shock to hear.  But this information was 2nd hand and maybe it isn't as it sounded.  I will reserve comment on this until we've had more follow ups.

Although they were trying to admit him under pneumonia, he clearly does not have a pneumonia.  Our respirologist was by and she is running some additional testing since we are in hospital and it could shed light on his lungs and their function or any lack there of.  We just had the CT scan this afternoon so do not yet know the results. 

So with all other things ruled out, it seems it is a gastro-intestinal bug.  It had a very weird presentation and that confused a lot of us (including the doctors).  They took a stool sample today, so hopefully we know at some point what the results are.  A swab was taken his first day and we are still awaiting the results to find out if it is a virus and which virus it might be.  Apparently, they now send the swabs to a larger city nearby and have them run tests.  It is much slower in providing responses.  I spoke with the doctor who runs the therapy facility he attends and they assure me that none of the other children nor the staff have any signs of a GI bug...and there isn't any in our house, so where did he catch it?

We took Ethan off the monitors because for the CT the probe spots had to be removed and it was the second time they'd been removed, so hopefully he continues to behave himself tonight and continues to improve health wise.  His sleep patterns are all out of whack again, and I hope that doesn't take long to change when he is home again.

Almost a Year...

That's how long we managed to stay out of hospital!

Ethan returned to therapy on Monday morning and I picked him up on Tuesday at 17:00 as previously planned.  When I picked him up I saw a really lethargic, unwell little boy!  He was so not himself.  They had told me he'd been sick twice that day (during transfers - when moved from one position to another) but was in good spirits otherwise especially in the morning.  He'd slept well the night before and had had a nap.  For someone who was that well rested, he sure didn't look it!  I dialed up Clayton on the cell phone when I got into the car and had him call the after hours clinic because I thought he needed to be seen.  I didn't even get out of their driveway before Ethan had gotten sick twice.  I picked up Clayton and Lorelei (and Ethan's suction machine and a couple other supplies) on our way to the after hours clinic and Ethan was sick again a couple times.  At the clinic he was sick twice.  When the doctor came in she said, "And why aren't you at Emerge?"  And promptly sent us there.  On the way, Ethan was sick again a couple times and in the ER he was sick one more time.  Besides the ones in the car it has mainly been when he was transferred (IE: wheelchair to car seat).  He was admitted last night and we've been running tests to see what is wrong.  We're pretty certain it is not a respiratory illness (they did give him a dose of antibiotics in the ER but we have pushed not to have another set started until it is certain that he has a respiratory illness).  He has not been behaving as though that may be his problem.  His oxygen saturations are okay (a bit of dipping but not much), he is not working hard to breathe and does not have nasal flaring.

His chest x-ray never looks good, so there is no change there and he has not been sick again since last night...but not for lack of trying.  He has been lurching a fair bit but since he doesn't have anything in his tummy he has not been able to get sick.  He is only getting an IV right now and specific meds (that he gags on even though they go into his tummy).  He has had a shunt series (x-rays of the shunt track) done and they show no concerns.  We are awaiting an MRI of his head to see if there is anything going on there.  He has had some loose stool, but they've been odd lately, and only started after the antibiotic/IV fluids last night.  No one knows what it might  be, either a gastro bug or something with his brain.  Hopefully we'll find the answer soon.  His MRI is tonight at 21:00, and we should know the results tomorrow morning...

He has had moments of more energy today, but still far from being his usually wiggly, smiley self!

Long Time to Compose...

Ethan went to have a casting done to create a mold for his new back brace recently and it was very traumatic.  They used fibre glass to create the mold so we laid him on his back and they took the mold of his front side which went pretty well despite me having to hold his hands above his head and Uncle Jon holding down his legs.  Then we had to flip him over and Ethan started screaming and fighting...and it didn't stop the whole time we had him on his tummy.  Ethan has not had tummy time since sometime in November 2011 or earlier and he's never been a fan of it.  On the bright side, he is pretty strong and I guess it is good to work his lungs...but it was really hard to watch.  I think he was a bit panicked about the ability to breathe too as his face was on the table and he couldn't easily turn his head to breathe.  Because of all his yelling he was drooling and had nasal secretions.  I tried to clear it for him with a tissue but it didn't work so well while trying to hold him down.  To top it all off, the person creating the brace for Ethan didn't seem to think it was it was going to do much as his curvature is so far and beyond what the Boston brace was meant to do.
If I haven't mentioned it before, with scoliosis, once detected the typical pattern is to sit and watch...then you move on to bracing and once the scoliosis hits 45 degrees the general course is to do surgery.  Ethan's scoliosis has progressed to above 70 degrees.  We have been trying serial casting in hopes of holding off surgery until Ethan has reached his full growth potential.  The earliest they have done a full fusion is at the age of 10.  This leaves the growing rods or VEPTR (titanium rib) options...both of which require surgery every 4-6 months until skeletal maturity is achieved.  The surgeries are to keep his spine straight at a 1 cm per surgery.

After watching his reaction to the casting for the brace, I started again researching the surgery option with lots of mixed results (and mixed emotions for me).  There are several benefits to surgery- typically it straightens pretty well from the start, opens up the ribs allowing for full lung capacity, may relieve pain from being crunched up.  Then there are the potential concerns...starting with the major one - surgery could cause death.  Surgery can take up to 10 hours, they can lose up to 1/3 of their blood during surgery and it is difficult on healthy lungs.  Given Ethan has chronic lung disease it could be harder for him.  Add to that, that having surgery at an early age could lead to crankshaft phenomenon (where part of the spine continues to curve and rotate despite the fusion on the other part of the spine - front vs back), despite the possibility it could help back pain...it could cause chronic back pain in adulthood, the growing rods could cause spontaneously fusion of parts of the spine (a 4 year old vertebrae/rib size would not help an adult much), the growing rods could break or become infected...  So much to process and try to figure out what is the right course of action for Ethan.  If he isn't in pain now, I'd hate to do something that could put him in pain...is it better to do it now, will it actually improve his health?  As you can see...so many questions too! 

For now I have settled into waiting for the brace to see what it is able to do for him.  Meanwhile, I will start to inquire with the various specialists to see what they have to say about surgery and his health going into it (IE are his lungs strong enough to handle such a surgery? has his heart moved due to the scoliosis?).

On a totally unrelated note...Lorelei got her first two wheeler last week.  She was too sick to test it out, so only got to try it last night.  She has been bugging for one for a bit.

Watch where you're going!

It will take some practise, which hopefully she's up to the challenge of.  As you can see above, she kind of leans in to Clayton and that won't work so when when trying to balance on her own.





Free Bird!

We saw the orthopedic surgeon yesterday...

Although the picture is poor quality...does the above scene look familiar?  How about this one?

No your eyes are not tricking you (if you noticed or picked up on my hints...)!  That is belly and back flesh you see.  Ethan is free from the cast again.  After x-rays yesterday, the surgeon said that there hasn't be a great improvement over last year's images.  The good news is that he isn't getting worse but the improvements are slight.  He is still happy that we're able to hold the curvature (the degree is still pretty severe), but has now prescribed a hard brace for him.  We go on Friday to have him casted for the mold to create the brace which he will have to wear all the time (but it can be removed for baths, etc).  It might free us up a bit more where we could feed Ethan on the road again and not have to worry about him sitting for even short periods of time (the cast would dig in sometimes and we always ran the risk of him pooping up it...but if that happens in the brace we should be able to clean it).  The downside to such braces is that they are not really meant to correct...especially at Ethan's curvature but if it could hold him where he is for at least the summer, that might be good.  It would reduce the sedations he requires.  The surgeon has agreed to follow him closely to make sure that the curvature doesn't get worse.  Meanwhile, Ethan gets to have his skin free.  It needs it too, he has another couple sores on his back.  Poor guy, when we brought him home yesterday he was all itchy and scratched off a bunch of old dry skin.  After a bath and cream he isn't really scratching anymore.  :)  Ethan was starting to outgrow the cast again and I think we caught it before it was too tight on him.

Clayton and Lorelei have cleared their Strep infections, but not before we found out that Clayton is now allergic to penicillin.  My cold is pretty much better and my back continues to heal.  Clayton went with me to yesterday's appointment to move Ethan and his wheelchair.  On Friday, I've recruited Uncle Jon to help out.  Hopefully I fully heal soon so I can care for him as I used to.

Not Just Ethan This Time.

So, the meeting with Ethan's new pediatrician went well.  She remembered having seen him in the clinic before and we went over his extensive history.  She did confirm he was sick, likely with a virus that lasted a long time...we thought it cleared up...but he is either sick with another virus/cold or he never really shook the last one.  He hasn't been 100% himself since April 30th and to be honest...I could do with him feeling well again!  The pediatrician referred us to the Geneticist again to follow up with the Neurologist's line of thinking.  That appointment is scheduled for later this year.  I'm not holding my breath that they will find out anything new, but we'll go anyway...

Ethan has since also seen his Respirologist who wants a chance to assess him without the cast and is having trouble deciding what testing to proceed with for his lungs and what they can/cannot do.  Meanwhile, we've increased one of his puffers.

We recently had an appointment with the doctor/team that runs things where Ethan goes to therapy.  They had hoped to restart him as an outpatient today, but since he is still congested we had to cancel that again...  It has been since mid-November that he's been in therapy. 

Some exciting news is that we got another standing frame to trial - for a week.  He did pretty good in it yesterday when they were setting him up all things considered (mainly that he hasn't used one since December).  We'll have to put him in the standing frame frequently to see how we like it. 

But that is difficult for me as I hurt myself on the weekend trying to 'beautify' the front of our house.  I picked up a bag of mulch, turned and something in the lower part of my back made a nasty popping sound and I almost hit the ground!  And this of course on the first bag of mulch.  I had to abandon my efforts shortly afterwards.  (On a side note, I did get a compliment for what I did get done.)  Here's hoping I get a chance to get back at it soon...  But in the meanwhile I have to let my back heal!  Add to that I caught a cold.  Oddly enough, that isn't the worst of it...Clayton & Lorelei are being treated for Strep Throat!  Clayton's got really bad with other side effects before he got antibiotics...thankfully Lorelei's didn't get it as bad before we got her meds. 

Next week we meet with his Orthopedic surgeon to see how we're going to proceed with his casting...that's our hope anyway...

In the News

This week there was a news item on MSN that caught my attention.  A Toronto couple has been threatened to have their 3 week old son taken from them because CAS (Children's Aide Society) does not think they can care for him because both parents have cerebral palsy.  The following is a video of them caring for their son.  You can see that they are only limited by their gross motor skills and speech.  They really have a great fighting attitude, love and the desire to parent their son.  http://www.cbc.ca/news/health/story/2012/05/01/toronto-mississauga-disabled-couple-fight-to-keep-son.html

Just last week I was talking with someone who has had to deal with CAS and they were telling me how difficult it can be to get CAS to intervene in situations they really should.  And here they marginalize those who really care for their child and want to do the best for him.  The above story really bothered me.  It's not like we know what Ethan's future will bring, but if he is capable, I would not want someone with their preconceived notions (likely negative) to determine that he is unfit to be a father to his child.  I think this gives great hope to parents of children with special needs and likely to those who have some limitations but are still quite capable in other ways.  I can't help but think of all those children that are born into families under less than ideal conditions, those who are unloved, those who go uncared for, most strongly those drug addicted babies we heard in the hospital during so many of Ethan's stays.  To knowingly, intentionally (call it what you will) do this to a child...I gets me so riled up I cannot be politically correct about it.  At the minimum it makes me want to knock some sense into people.  But enough about my soapbox lecture...to the real point of my post!

I was moved to tears today with the following news: http://www.cbc.ca/news/canada/toronto/story/2012/05/04/toronto-cerebral-palsy.html

I just want to share the good news with anyone who'll listen!  :) 

Catching Up

It seems often there just aren't enough hours in a day, days in a week, weeks in a month...I could go on and on but I'm sure most people feel the same way.  Several things have happened over the past month since I last posted and I've been meaning to get back to posting...

So, there was no 'possibility of him outgrowing his cast'...he really did outgrow the cast!  He had it removed on 12th and when it came off his poor tummy was formed to the hole in the cast.  Below you can see the raised part of his abdomen which was poking out of the old cast.

But that wasn't the worst of it...he ended up with several pressure sores from the last cast.  One of them was aggravated so much it was actually raised up and at first I thought his rib broke.  Turns out it was just a doozy of a pressure sore.

The pressure sore is on his right side, near the end of his ribcage. 

As always, he giggled lots while the cast was being removed.   The vibrations must really tickle the skin when the saw cuts through the cast.  

He was super sensitive to touch after as well.  Anytime you even gently touched his skin he would startle and jump.  I was somewhat surprised since we often try to reach in and give him a little scratch type rub as far as we can get. 

After 10 weeks straight in casting, Ethan enjoyed some 'free' time before his next cast.

He was out of the cast until the 17th.  During that time we brought him in for some acupuncture (not one of his favourite appointments, but definitely worth trying if it helps loosen his muscles), and slathered him in cream.  We also discovered that he has lost his upper body muscle control/strength as he was not able to control his upper body for very long.  Of course the day before his new cast, the weather turned warmer and he ended up with a heat rash.

Ethan looks pretty good in this supported pose as far as his spine goes...you might be able to make out the rash and the lump protruding on the right rib.

Here Ethan isn't as well supported, and although it is not really in focus, you can make out where his spine is.  These were taken the night before his new casting.

Ethan, max-relaxed the morning of his new casting.  As our luck would have it, that night he was up for most of the night and only fell asleep about an hour before we had to bring him to the hospital.

We treated the rash with hydrocortizone, but when he was recasted it was with the pressure sores unhealed and the rash still present.

Ethan and I all ready to head into the OR.  
 

He fell asleep again before we got into the OR, and he did not really respond negatively as they were sedating him.  Once he is sleeping, I head out and they got started with the procedure.  The casting went pretty well, but he took longer in recovery to get his oxygen saturation up enough for them to discharge us.  I believe the main problem was the cast needed adjustments in the neck region and it was pushing his mouth closed.  Ethan is more of a mouth breather, so he likely wasn't able to get deep breaths.  I don't have any pictures of him in his new cast yet but do like the opening they left for his chest much better.  It is larger than any others in the past have been.

Unfortunately, under his uncle's care the day after the new cast went on...there was a bit of a poopsplosion that got the casting shirt.  We were able to remove most of it - and thankfully there is no odor as he is scheduled to remain in this cast at least until the end of May.

At his recent neurology appointment, the neurologist said he didn't think that Ethan's developmental delays could be attributed to either his Dandy-Walker cyst, nor his Infantile Myofibromatosis and thinks there may be something else going on.  He would like to find a syndrome that would explain all of Ethan's particular health issues...  I gave him my usual response that Ethan has 'Cutest Boy in the World Syndrome' and the neurologist said, that would be secondary to this other syndrome as well.  :)  I will be surprised if they are able to find a syndrome to cover all of his medical conditions as I recall they were not able to even link his two main ones.  And trust me, we've googled the combination many times before without luck!

On a good note, I was recently advised that Ethan's spinal images came back showing 10-15 degree improvement since March.  His surgeon is happy with his progress thus far.

Ethan seems to be coming down with something again.  :(  He was sick 4 times today and he sounds pretty congested.  Lorelei has a bit of a cold and it may have transferred to him this time.  It is really disappointing as I may have to cancel his physiotherapy appointment that was scheduled for tomorrow morning.  It has been since December that he has been in a standing frame and we'd really like to get him weight bearing again!  Tomorrow Ethan also goes to meet his new pediatrician.  We've seen her before, this is just the first time we're going as her patients.  We switched pediatricians when Ethan's original pediatrician moved locations in October or November.  He remained healthy for so long that we didn't have to go in except when he had his last infection and that was just at the clinic to get a prescription.