Joey Graduates Preschool and Other Stuff

Joey and Gramma Phyllis graduated from Preschool last week. This is no small feat! After attending one day per week from October to June the progress Joey has made is astounding. His initial fear of other children has all but vanished, he finds other kids interesting rather than scary and can be left on his own for periods of time to explore and be independent.

None of this would have been possible without Gramma...she attended faihfully every week, and it was A LOT of work. The school is in a church basement with stairs...lots of stairs, and Gramma was solely responsible for Joey's mobility so it involved a lot of carrying. Joey's needs are too great for him to attend this preschool without assistance, so without Gramma Joey would have missed out on this amazing opportunity because the funding for mediators has been both cut and frozen, we could not have afforded to pay someone $15 an hour all year to accompany Joey. So a big THANK YOU to Gramma, we couldn't have done it without you!

Here's Joey with Gramma coming down the "red carpet" to get his diploma:

Joey and Gramma accepting the diploma from his teacher, the wonderful Mrs. V.

Joey and Gramma sitting proudly with the rest of Joey's class

Joey and his classmates. He's the second from the left in the front row. That's right, the one who is much more interested in his neighbour that anything else :)


Next year Joey will be attending a different preschool in preparation for the transiti0n to junior kindergarten in September of 2010. This new school feels they can handle Joey without a mediator, which is the next big step. Gramma is going to attend with him for the first few weeks as I'll be busy with a newborn but the goal is that by October we will be dropping Joey off and picking him up, not staying with him throughout the class. I know he can do it and I'm so excited for him to experience this independence from family members, a HUGE step!


In other news:

At the beginning on June Jason and I took what will likely be our last trip to Vegas in a loooooong time.

In all the times we've been to Vegas (6 for me, 5 for Jason) we've never actually had our picture taken with the sign.



Jason in heaven...Star Trek slot machines!!!



The friendliest slots in Vegas, the progressive Elvis slots. They move around Vegas from casino to casino, we actually had to research where they were before we left. We found them safe and sound at Planet Hollywood. The progressive hasn't been paid out since 2006 and I thought for sure it was waiting for us, but no such luck.

I was so excited to be in Vegas during their extremely hot weather so I could use the pools, but this is the crowd we encountered. Even thought he pool "complex" was huge, it was wall to wall people like this everywhere.

Ahhhh, the best sign to see when on vacation. I love visitng the US but am always so happy to be returning to the best country in the world.

And last but not least, on to Joey's latest discovery..."singing". It's very cute, but very loud and once he starts he goes on, and on, and on.... Here's just a sample. I warn you, turn your volume down :)

Ouch!

Poor kid can't catch a break. On Sunday night Joey was bitten by a mosquito at the outer tip of his eyebrow. All seemed normal until Monday night when it started to swell, and this is what he looked like when he woke up on Tuesday morning:

Other than some rubbing he didn't seem that bothered by it, but the delayed reaction caused us some concern. So Tuesday morning we went to see the nurse practitioner and the doctor and after a thorough examination we decided to take a wait and see approach, as our clinic tries to be as medication-free as possible. Just a dose of Advil to bring down the heat and swelling and we were on our way.

He's definitely looking better today, though it's not completely gone. We have been told it could take up to a week for it to resolve completely! Next week is nursery school graduation so I'm hoping it's gone by then...

- P, J & J

New Pictures

Not much to update... Joey's little brother is developing well, everything seems to be stable right now. Our last visit to Mount Sinai on the 3rd was very quick...Dr. R said he is comfortable that we've done all of the investigations possible and everything appears to be normal at this point, short of doing an amnio we've pretty much done everything we can. I go back one more time to meet with him in 2 weeks, and then another specialist on July 15th (she specializes in liver problems during pregnancy) and if all goes well he is happy to have me followed by our regular OB and deliver locally, which is great news! I'm still marginally itchy but the medication seems to be doing its job. I know I'm not out of the woods yet, my third trimester starts at the beginning of July and I expect it to get worse then.

Joey is doing very well. Still no huge progress towards walking but we're trying to be patient and celebrate the little things. Today we went to visit Papa Roy and play with the little toy tractor Joey's nursery school has lent us over the summer. Jason and I had never seen him on it before and were so pleasantly surprised at how well he balances and moves on it:

Yesterday was his nursery school's year-end picnic, we found some cool equipment on the playground that he really enjoyed, especially this little flower that spins:

Hugs from Mommy on the teeter-totter:

Nursery school comes to an end in 2 weeks, so Gramma gets a break over the summer. Tomorrow we're touring a different nursery school that may be better able to accommodate Joey in the fall, though I will be very sad if we have to leave the one he's at, they've been so great to us.

- P, J & J

It's Definitely a BOY!!!!

That was the longest ultrasound I've ever had...the tech did a complete anatomy scan, which took 40 minutes, then came back and asked to take a few more pictures, which took another 10 minutes. After that the doctor came in, another 30 minutes of ultrasound, then he wanted to switch rooms/machines so he could look at something more closely, that lasted another 20 minutes. I guess when you have a child with unexplained disabilities people want to make sure they don't miss anything!

Anyway, the doctor couldn't find anything left of the cyst on the brain, which is great. He did however find a calcification in the abdomen, near the liver, but says it's like the cyst...if there are no other anatomical problems (like clenched fists, short femurs etc.) it means nothing. Anyway, for some reason I find it less concerning when it involves the liver and not the brain. And I have a feeling that if everyone had over an hour and a hlf of ultrasound scrutiny performed on their unborn children there would be a lot more "cysts" and "calcifications" found!

He said everything else about this baby looks perfect, and I'm measuring within a day of my due date. All in all it was a very good day!

G-Tube is a No-Go....For Now

Today we met with a nurse practitioner and a doctor in the G-tube clinic at Sick Kids Hospital in Toronto. Definitely a worthwhile trip, it was extremely informative and really helped us to get down off the fence and make a decision.

Jason and I have decided that at this time a G-tube would essentially be trading one aspect of Joey's quality of life for another. We honestly thought that G-tube feeding would be easier and faster than what we deal with now. The nurse practitioner and the doctor were both amazing, and they described everything involved from start to finish. Each feeding would require Joey to be kept still and quiet for about 40 minutes to feed him one can (237 ml) of Pediasure. That would likely involve keeping him strapped in a chair for that length of time, at a minimum of 2-3x/day in order to increase his caloric intake from what he currently consumes. 1.5 hours strapped in a chair per day? I think not! The other option was overnight feeds, which would be tricky because of how active Joey is, and would also involve monitoring throughout the night, you can't just hook himup and go to bed. Fiddling with the tube,pump etc. after he falls asleep would disturb his sleep, not to mention ours. One of the most amazing things about this kid is his very solid, regular sleep pattern. Since 15 months old Joey has slept through the night, usually 10 hours, without waking. Do we really want to mess with that?

So after much consideration and discussion we have decided to put off the G-tube...for now. Right now Joey is eating very well, unlike 2 months ago. Things may change, and they now have a file on us and we can change our minds at any time. The doctor was very much in agreement with our decision. He told us that many of the kids that come through their clinic are just black or white in regards to making this decision, and he agrees that Joey is in a grey area. We did talk about a less invasive alternative, which is appetite stimulants. He seemed to know a lot about these medications and will consult with our pediatrican about it further. We may be able to try this the next time Joey's feeding takes a turn for the worst, and maybe it will get him back on track more quickly.

So right now I'm in the hotel Starbucks while Joey and Jason take a little nap. We're staying at the Hyatt downtown Toronto, which is lovely and has just been renovated. We have a great view of the CN Tower from our room on the 15th floor and tonight we're going to be tourists and take Joey up to the top of the tower. Mount Sinai and Sick Kids is about a 25 minute walk from the hotel and the weather is gorgeous, not too hot and not too cold. It's turned out to be a great day, we're really happy we decided to stay in town for the night.

Tomorrow morning at 8:30am is my level 2 ultrasound. I'm hoping that the doctor won't find any trace of the cyst and that we find out if this is a boy or a girl! Right now the baby is hiccuping up a storm, just like his/her older brother did when I was this far along, which is why I'm here typing instead of napping with the family.

Wish us luck tomorrow!

- p, J & J

Good News, for a Change

Just a quick update...I received a call from the nurse at Mount Sinai with some of my blood test results from last week. My bile acids have gone down to 12.9, which indicates the medication is working somewhat. It's still above normal but lower than the 15 it was measuring a month ago. My other liver function tests are still relatively normal, with the exception of a slightly elevated billirubin (if it gets too high it results in jaundice).

The risk for the baby to have Down Syndrome is 1/34,800 and the risk of Spina Bifida is 1/19,000, both very low risk, these stats are "the best they can get", according to my regular OB, Dr. S., who I saw on Friday. His response to the choroid plexus cyst? "Who cares?" were his exact words. He said that because the rest of the ultrasound was normal, and my Down Syndrome, Spina Bifida and other test numbers are so high, there is no reason to worry. He also said that when he worked at London Health Sciences Centre a number of years ago they wouldn't even mention these cysts on ultrasound reports if no other abnormalities were found, because they are almost always insignificant. He really does have a way of putting things that makes me feel a whole lot better. I'm haven't stopped worrying 100% and probably won't until this baby is born, but I do feel much more confident that this baby is healthy.

This Tuesday is Joey's appointment at Sick Kids in Toronto for the consultation with the G-Tube clinic, and Wednesday morning is my appointment at Mount Sinai for the level 2 ultrasound. We're going to make it a mini family vacation and stay downtown Toronto for the night, go out for dinner and find something fun to do with Joey. Hopefully I'll have great news from both appointments on Wednesday!

- P, J & J

This kid is messing with my head

Joey and I travelled to Vaughan today to a 3D ultrasound place, hoping to determine the sex of this child once and for all. After 20 minutes, one Grande Iced Mocha from Starbucks and 2 Pop Tarts later, this baby would NOT uncross its legs! The tech said her best guess was that it was a boy, but wouldn't commit to anything. She said the cord was a bit in the way, and while she *thought* she caught a glimpse of a penis she just isn't sure. Now keep in mind, this place is not a medical clinic, they do this for a profit, so the last thing they want is to tell someone they have to come back to be sure, since a repeat visit is free, so if she was sure she absolutely would have said so. Here is the picture I got today, which she was very reluctant to give me as she feels it's "misleading":




Joey quite enjoyed the ultrasound, and was very interested in the black and white images on the big TV. When the tech would switch to 3D the colour changed to a more sepia-like tone, and he would lose all interest. As soon as she switched back to 2D he was glued to the screen!

I have a gut feeling this baby is a boy, and have decided that I will decorate the nursery in green, just in case my gut is wrong :) A week from this Wednesday is my level 2 ultrasound with the doctor at Mount Sinai, so hopefully this baby will uncross its legs by then. Of course I''m a bit more concerned about the cyst on its brain, but the issue of its sex has been a nice distraction from the worry.

- P, J & J