Big, Big News!

Joey has started walking! Well, not completely, and certainly not independently, but it's definitely a start and much more than he's ever done in the past. Thanks to Gramma's hard work (and I suppose Joey's too!) she discovered that he will now take steps with the only support being someone holding his hands. You'll see in the video he's still very unbalanced and there's no way he could do it without hand-holding, but it's thrilling to see such progress regardless.

Here's a little clip from the playground outside of IKEA, we were there last night and thought we'd let him "stretch his legs" before getting back in the car to head home.

Gramma is such a pro she can do it with holding just one hand, but Jason and I aren't that advanced yet. I'll capture the one-handed walking on video soon.

The best part is that he is HAPPY while doing this, not crying like he has in the past when we made him work. I think he is starting to understand how much fun it is to be up on his feet!

More updates to follow, we've had progress in other areas but I wanted to get this most exciting news posted ASAP!

- P, J & J

Quick Pregnancy Update

I received a call from the nurse at Mount Sinai hospital...it appears my bile acids are now starting to increase, up to 14.1 from 12.9 in May, despite an increase in the medication last month. Not devastatingly serious, but certainly explains the increase in itching over the past few weeks.

I also failed my glucose test, which means I now have to take a 3-hour glucose tolerance test and this likely indicates that I have gestational diabetes yet again. My level was 9.9, and normal is up to 7.8. Apparently anything above 7.8 identifies 90% of patients with gestational diabetes.

So I will have to take the 3-hour test sometime over the next week, and I'm going to have to increase my medication for the cholestasis from 3 x/day to 4x/day. I can go as high as 5x/day at my discretion, anything more than that I have to discuss with my OB.

Other than that this baby seems to be doing fine...lots and lots of kicking, usually at the worst times but that's okay, it's reassuring me for now. I believe that now that I'm in my third trimester we will begin weekly non-stress tests at some point. My next appointment with my local OB is July 16, and then I meet with my high-risk OB at Mount Sinai July 23, along with another high-risk OB that specializes in liver problems during pregnancy. We're hopeful that the 23rd will be the last time we have to travel to Mount Sinai, if the high risk OB is still comfortable with my local OB following me until delivery.

That's all for now,

-P, J & J

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