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.