Joyful Joey

I can't believe it's been almost a month since I last updated the blog. So much going on! I'll start with Joey...

It's no coincidence that if you remove the "e" from his name it spells joy, because that is what this kid brings us on a daily basis. Our most recent lesson from Joey? To find enjoyment in the everyday, as he does with our new curtains in the living room:


http://www.dropshots.com/pmq97#date/2009-08-18/07:00:50


(sorry about the link, I can't add videos over 100 MB directly to the blog. The bonus is that there are lots of other Joey videos on dropshots.com!)

He is also now pulling to stand over and over again, but only in 2 places..the couch and his crib. He finishes the move 99%, he just needs to work on getting his left foot under him.


His walking with assistance is getting smoother as well. He has his favourite places to walk to, usually from the front of the house to his swing in the back, but he will walk pretty much anywhere outside. Inside is more of a challenge as he would rather just scoot around on his bum on the comfy carpet and hardwood.





We have a little pool for Joey in the backyard, which he absolutely loves on hot days. So much do that we've taken to giving him his bath in it on occassion.

And on a couple of the hotter days we enjoyed a swim in Zia Jodi and Uncle Jason's pool along with cousin Ty. We finally had the chance to use this floatation aid which we received as a gift somewhere along the way but can't remember from who! If it was you please know that it is the BEST one we've ever used, it fits him perfectly now, requires very little air to blow it up and folds up nice and compact. I'd also love to know where it was purchased :)

Joey and Ty having a "conversation":

We had a chance to get our garage organized and our super-deluxe double stroller finally made it's way out of hibernation. We bought it back in March and it's been waiting patiently to see the light of day. We decided to take it on a test drive, Joey gave it a thumbs up:


We're still on the hunt for this Little Tikes tractor. It's been great for Joey,and with the addition of his new safety gear I actually feel comfortable moving a few feet away from him instead of hovering over the poor kid. This one belongs to his previous nursery school and has to be returned in a few weeks, so if you know where I can find one new or used please let me know.




Aaaaaand of course he took a tumble. But it's okay, he was protected. A few tears and all was well.

Joey's little brother is also doing well. I am now 34 weeks pregnant and things seem to be going smoothly.We haven't had to go back to Mount Sinai at all, which is a blessing. Beginning at 32 weeks my regular OB has been on top of things and I go to the hospital weekly for non-stress tests (NSTs). I've had 3 so far and all three were excellent, the baby seems to be enjoying himself in there and is doing everything he should be. I've had more bloodwork done, everything is checking out fine. I'm still waiting for my most recent bile acids test result and I suspect it will be higher than before as unfortunately the itching is getting worse.

It's hard to believe that a week Saturday I will be 35 weeks 6 days pregnant, which is when Joey was born. I'm hopeful this baby can stay in just a bit longer...Dr. S.would like to induce me somewhere between 37-38 weeks. This pregnancy has flown by compared to my pregnancy with Joey...with him I felt like an elephant, like I was gong to be pregnant with him forever. This time I'm not sure where the time has gone. I finished work on July 30 and have been very busy getting lots of things done around the house before the new arrival. His room is about 90% complete and thanks to Gramma Phyllis taking Joey to his physio group every Thursday and Friday morning I've gotten some bigger projects done too. I'm bracing myself for life with a "typical" newborn, I know we were very spoiled by Joey's infancy. He was such an easy kid, he woke through the night like all babies but would just eat and go back to sleep. He was content all the time, and I'm nervous that this new baby won't be as easy!

Tuesday I have another NST at the hospital, followed by a bio-physical profile ultrasound.I'm excited for the ultrasounf for a few reasons...I've never had an ultrasound past 24 weeks with either pregnancy so I can't wait to see the little guy! I also want to confirm for the 6th time that he really is a boy and not a girl. Most importantlythey are going to be checking the baby's muscle tone, something I didn't realize could be accurately assessed in utero.Apparently it takes a great deal of muscle tone to maintain the fetal position and that's what they're going to be looking at. It would have been so interesting to have had an ultrasound of Joey at 35 weeks....

That's all for now. Hopefully next week I'll have an ultrasound picture to share!

- P, J & J

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!