Joey Runs Away from Home

Okay, well maybe he didn't "run" but "Joey Butt-Scoots Away from Home" didn't have the same ring to it.

The playmat you see in the foreground with the polka dots on it has been Joey's safety zone for well over a year. We would take it everywhere and he would pretty much stay right on the mat and rarely stray. If he did go off the mat it was usually to retrieve a toy and he'd scoot right back onto it.

So yesterday Jason was cleaning out the garage and he had Joey set up to play out there. All of a sudden the door to the house opens and Jason yells "come look! he's running away from home!" and sure enough there is my child halfway down the driveway! I thought maybe it was a fluke but he did it over and over again each time we brought him back to the mat. He's certainly gaining confidence!

This was the second video I took. The first one is dizzying to watch because the camera is shaking with my laughter. I wonder what the person in the car that drove by must have thought!

Joey is definitely settling into his role of big brother. He is now more interested in Ben and is surprisingly gentle with him.

Ben is a little chunk. He was weighed again on Thursday and is now 8 lbs 5 oz! He eats ALL.THE.TIME. This is new territory for us, a child who enjoys eating, asks to eat, finishes what we give him to eat etc. What a treat! He's already out of newborn diapers and into size one! Just look how his face has filled out:

Week one home with both boys went much better than expected, though I do have to give a shout out to Gramma Phyllis, who took Joey to preschool on Tuesday and Thursday and also took him all morning on Wednesday. It made getting errands done much easier with just one child. And of course Lori, who accompanied us on our shopping trip on Wednesday and treated me like royalty by carrying Ben in the car seat, bringing in my groceries etc. I finally did tell her that I was feeling great now and had no problems lifting/carrying, but she insisted :)

- P, J & J

Baby Ben Joins the Family

Benjamin Charles completed our little family on September 16 at 2:17am after a relatively short 8-hour labour. It was tears all around when he was born and our repeated "is he healthy?" inquiries were met with a resounding YES from the doctors and nurses. They all knew about Joey and the fact that there was no way to predict if this baby would have the same disabilities and shared in our joy when it was obvious that Ben was 100% healthy. A few pictures of the moment...I remember not being able to see for a time because I was crying so much:

So I got my wish...a "typical" hospital birth, baby beside my bed, visitors, and a healthy baby. I didn't realize that the typical birth experience is served up with a healthy dose of adrenaline, accompanied by complete insomnia, exacerbated by an over-crowded birthing unit and maternity floor. Every planned induction and c-section for that day was sent home and rescheduled...except for us. Though I was scheduled to be induced at 7:30am it didn't happen until 6pm, but Dr. S was unwilling to postpone my induction to another day because of the cholestasis.

Joey came later that day to meet his new brother, however he has determined that if he doesn't look directly at Ben he must not exist. We did manage to get one shot of actual eye contact:

And how cool is this? 2 similar photos taken of Joey and Ben at almost the exact same age. The resemblance is crazy!

Joey:


Ben:

36 hours after birth we headed home. I was pretty much delirious with exhaustion, not having slept for even an hour in over 2 days. The first few nights were rough, but it must be said that it had nothing to do with Ben. He is a SUPER easy baby, so much like his big brother in his contentedness and lack of crying, just minus the severe disabilities. I had really psyched myself up for a colicky baby after how easy I had it with Joey, but so far he is fantastic.

Ben developed a bit of jaundice after he had been home for 2 days, so we had to return to the hospital on Saturday where they discovered that his bilirubin was up considerably to 242. They sent us home but we had to go back the next day to re-test, at which point it had risen to 252. On Monday we saw our family nurse practitioner, who re-ordered the test, and on Tuesday it was finally coming down and was at 219. His colour is much better, he is eating like a champ (what a treat after dealing with severe feeding issues for 3.5 years!) and he has gained enough weight to be back up to his birth weight of 7 lbs 13oz so there are no plans to re-test.

For the first few days Jason was home with us, and when he returned to work my Mom came and stayed for a week. She just left today so starting Monday I am o my own with my two boys. I am scared and excited all at once. It will be nice to develop my own routines but not having any help on a daily basis will be a big adjustment. Jason is pretty good at sharing nighttime duties which in turn allows me some sleep, and when I am rested I can do anything. When I'm not, well....lets just say you wouldn't want to be around me.

On Thursday I returned to our nurse practitioners office just to have Ben's weight checked and was met by our nurse and family physician who were eager to meet him. Our nurse, who has been so supportive of me, always asking how I'M doing first rather than how Joey is, asking after Jason and how we are coping, asked me a very frank yet interesting question...did Ben's birth make me sad about Joey? I thought about it for a second and realized that the exact opposite is true. Ben's birth has somehow "vindicated" the difficulties and challenges we've experienced with Joey, and having a child now that will likely develop typically makes me feel like I get the best of both worlds. I have said it so many times before, we are SO LUCKY to have Joey in our lives, the things he has taught us, the people he has led us to meet, the patience he has inspired and the satisfaction he has with himself are all amazing things that most other families will never get to experience. I'm sure a lot of people look at us with some form of pity, or fear that having a disabled child could happen to them, but in a way I feel sorry for THEM, they will never know what having a kid like Joey brings to your life, but I get to experience that AND having a typically developing child. So anything I feel like I was robbed of before has been returned to me through Ben, and I'm sure he will have all kinds of stuff to teach us too.

- P, J & J

A story about two little boys and a tractor....

So we had a tractor for Joey to ride on all summer, graciously loaned to us by Joey's previous nursery school. It was a little beat up, the back wheels were at a bit of an angle and a few of the screws were missing, but Joey loved it and it was excellent practice at balancing. We used it all summer with the knowledge that we'd have to return it.

Since we got it I had been looking for one of our own, new or used, to replace it when it inevitably had to be returned. It had come to our last option...to buy it direct from Little Tikes in the US for $50 USD, plus about $40 shipping, plus exchange, plus duty and customs charges. A little rich for this family with one of us about to take a huge cut in pay to go on maternity leave for a year! So I happened to mention that I was looking for a used one on a message board I frequent, which was met by a response from a lovely lady named Devin in upstate New York. You see, Devin has a son named Brenden who is 3 years old as well and has autism, so she understood how incredibly difficult it is to find that special toy that just "works" for a special needs kid. So, right away she asked Brenden if he would be willing to give his toy to another little boy who needed it. Brenden is non-verbal but understood and shook his head "yes". 3 days later the UPS man arrived with a big box containing Joey's new tractor, along with a note from Brenden and a picture of him riding the tractor!

So of course we put Joey on the tractor right away, took a picture (the one below) and sent it off with a thank you card to Brenden from Joey, explaining to him that Joey's muscles don't work the same as other kids and that this was one of the toys that he is really able to use, and thanking Brenden for doing such a kind and generous thing.







The really nice thing is that this tractor is in much better shape, since it hasn't been used by a school of children, and much more stable for Joey to ride on. I' m pretty sure the expression on Joey's face says it all! Thank you Devin and Brenden, many tears were shed in this house the day that tractor arrived over the kindness of strangers!

In other Joey news, he received a new loaner walker last Friday. This one has much less support that the "Pony" he was using before. We still use the Pony purely for exercise and for Joey to experience the freedom to move around outside as he wishes, but it certainly wasn't aiding in getting him to walk independently anymore, he had surpassed its usefulness. So along comes the "Spider", as Jason calls it. It definitely provides less support and causes Joey to work harder, and has all kinds of adjustments that can be made as he gets stronger in it. Surprisingly he took to it right away, unlike the Pony which took him months to make a move he started moving a bit right away:

So that's pretty exciting for us, and he will start bring it to preschool as well so he is upright with his peers.

Today is our last day as a family of three. I had all kinds of mommy-son stuff I wanted to do with Joey on our last day alone together, but it just wasn't in the cards. Joey picked up a bug after only 2 days of preschool and last night I started feeling under the weather too, so today we moped around being sick together. After dinner he is off to Gramma's since Jason and I are headed to the hospital at 7am tomorrow morning for my scheduled induction. Our next post should include pictures of Joey and his new baby brother!

- P, J & J

Induction is Booked, Anxiety Sets In

It's so strange to know the date your baby will be born. Some people feel that way about knowing the sex of the baby before it's born, which is something I just HAD to know, but I feel like knowing the arrival date spoils to surprise even more than knowing the sex.

But, I know that due to the cholestasis it's best to induce between 37-38 weeks, and I will be 38 weeks 1 day on September 15th, which will be this baby's birthday. Of course it's entirely possible he will decide to come on his own before then but so far he has seemed pretty comfortable where he is. So only a week and a half more of being a family of 3, soon our lives will be forever changed by the arrival of our 4th family member....does that make me sound anxious at all?! No, I know that there is no better gift I can give to Joey than the gift of a sibling, and I know this new little boy will be forever blessed to grow up with a brother like Joey. So I am excited, maybe just a bit anxious, but I am so busy over the next week that I won't have much time to think.

I also got the results of the biophysical profile ultrasound I had done over a week ago. It measures things like heart rate, amniotic fluid level, basic anatomical measurements, approximate weight of the fetus, fetal movements, fetal breathing and the reason we had the test done in the first place...muscle tone. The results are fantastic...8.8 out of 10! Anything over 8 is considered normal. There was absolutely nothing remarkable about the scan and all signs point to a happy, healthy baby. His approximate weight at 35weeks 1day was 6 lbs. 2oz.

Next week is a big week...Joey begins his new preschool! I'm praying the transition goes well, Gramma Phyllis is going to accompany him for the first few weeks so hopefully that will help. Tuesday is the big day!

- P, J & J

Sippy Cup Success!

For the first time in 3 years, 5 months and 2 days Joey held a bottle and brought it to his mouth! This has been the bain of our existence, having a child who relies on others 100% to feed him both solids and bottle, so this is HUGE progress!!! He didn't actually drink from it, but he picks it up, plays with it and brings it to his mouth repeatedly. I think he just needs to figure out that he needs to tip his head back to get anything from it. Of course I managed to capture it on video this morning:

About 2 weeks ago I purchased the bottles you see in the video, as they were the only ones that took he nipples from Joey's other bottles and had optional sippy cup handles. This was a big deal for us as Joey has been using the same bottles since he was released from the hospital at 26 days old. For the past 3 weeks I have been feeding him from the new bottles just to get him used to the shape and size but with no pressure for him to hold it himself. On Monday I decided to put it in his crib with him for naps and bedtime with just a little bit of water. This morning I removed it and it looked like there were bite marks on the nipple but I couldn't be sure. So this morning I refilled it and put it on the floor, where he proceeded to put it in his mouth!

What a lovely start to the day :)

- P, J & J

Pulling to Stand, Again, Again and Again.

Joey is standing more and more these days, and in different places too. Last week he was scooting around in the hallway upstairs and decided he wanted to get back into his bedroom:










The fantastic part about that isn't so much that he stood up at the door, but that he obviously comprehends that the door handle must be grasped and turned in order for the door to open.

He also started standing at one of the baby gates in the living room:








And of course he stands in his crib:

I wish I could figure out a way to reconfigure his bedroom furniture to get the crib away from the window...the blind was a great motivator to get him to stand up but unfortunately it now needs to be replaced since he ripped a giant corner of it off. I'm also a little worried about what we will do once his centre of gravity gets a bit higher and he can fall right out of the crib. He is simply not ready to sleep on a bed, or even on a mattress on the floor. He doesn't understand "bedtime" and there is just no way he'd stay on his mattress to go to sleep. I suppose we'll cross that bridge when we get to it.

Joey was fitted for his new AFOs (ankle/foot orthotics) last week. Up until now he has had SMOs, which only came up to his ankle, but now that he's standing and walking with assistance he needs more stability up into his calves and knees, so these will come up higher on his leg. I went to this appointment armed with several interventions, like toys, books, videos loaded on the camera to distract him with, snacks etc. thnking this would be a nightmare like his haircuts tend to be. To my great surprise he just sat in the chair on his own and allowed the orthotist to do his thing without a complaint. He was actually quite interested in what was going on and wasn't even bothered by the casts being cut off!

And I saved the worst for last...a short video clip of my poor, poor boy at his group therapy session last Friday:

Joey has been attending a therapy group for non-walkers (kids who are at the age that they *should* be walking but aren't due to various disabilities) since January of this year. He basically cries through the whole thing. Gramma Phyllis has been the one to take him to class every week (2x/week over the summer) and while I knew he cried and wasn't happy I really didn't appreciate how bad it was until I went with him last week. It has baffled all of us as to why he hates it so much...it's a fun group where they play and sing songs, the therapists and other children are very friendly, the environment is kid-friendly, he is rested and fed beforehand and the activities are not too difficult for him. If you've ever met Joey you know that he rarely cries, maybe a total of 15 minutes in a 7-day period, so for him to react this way is very unusual. I don't even think we have ANY other video of him crying since he was born!

After much debate Jason and I have decided to let Joey take a break from this class for the next session which starts in 3 weeks. Joey has a lot of changes coming up...a new preschool in just over a week, a new baby in the house any day now...it's probably best to give him a break and maybe try again later. I just can't imagine he's getting very much out of the class when he is so miserable!

As for Joey's new baby brother, we surpassed a milestone yesterday. On Sunday I was exactly 35 weeks 6 days pregnant, which is how far along I was when Joey was born. So as of today I am officially the most pregnant I've ever been, and getting nervous with the realization that this baby can come at any time now. I don't feel ready but I'm not sure if I'll ever truly feel ready. Last weeks' tests seemed to be fine...no ultrasound picture though, apparently a 35-week baby doesn't look like much of anything in an ultrasound picture. The tech said I'm measuring bang on with my dates, which is great, but of course she can't tell me anything else. I haven't received a call so I'm assuming everything else checked out okay. Tomorrow I have another weekly non-stress test at the hospital and if Dr.S. is the on-call doctor I'm going to try and pin him down to an induction date. If he's not there I'll see him Friday morning and should have a definite date booked at that time.

- P, J & J

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