Through the blogging community I came across the blog of one very amazing family, who is going through a very difficult time in their lives.
http://sgirl79.blogspot.com/
Stacy has gone through her entire pregnancy knowing that her son, Isaac, would be born with several genetic abnormalities and likely would not survive long after birth, if he made it through the pregnancy at all. In addition to the blog I linked to above, she also started another blog as daily letters to Isaac:
www.mydearisaac.blogspot.com
I warn you in advance, do not visit either of these blogs without a box of tissues handy.
I have followed her blog for months and her strength and courage have been such a source of inspiration to me. Today was Isaac's birthday, a scheduled c-section. Isaac lived for 16 minutes.
The lesson I have taken from this isn't that "God only gives us what we can handle", nor is it that "things could be worse". Stacy wished for one thing above all others...to be able to hold her son while he was still breathing. Sure, she prayed for a miracle, but her biggest hope was simply to hold her son while he was alive.
So on the bad days I have, when I get angry and wish that Joey would just start talking or walking, I need to remember to be thankful for the seemingly small things that truly are a gift. Today Joey woke up with a smile on his face, he gave me hugs when I asked for them, and tonight he will cause Jason and I to laugh with the silly things he does.
And tomorrow I will get more than 16 minutes to hold my son.
- P, J & J
Tuesday, October 7, 2008
Friday, October 3, 2008
First Day of Preschool!
Joey became exactly 2.5 years old on October 1st and started preschool the very next day! Gramma Phyllis went with him to act as his "mediator" and it went much better than any of us expected. I'm not sure if I actually took a breath the entire 2.5 hours they were there, I was dying to know how it went, but Gramma is very good at keeping Jason and I informed at work and I knew an email would be forthcoming. I was not disappointed! I thought instead of describing how I heard his day went I would just post the actual email. That way you can also see how lucky we all are to have Gramma and Papa in our lives :)
Well, I have to give Joey an A plus for his first day at nursery school!! It went so much better than even I had anticipated. I had brought a few familiar toys and his blanket to sit on if everything seemed too overwhelming. Unfortunatly, I had left them all in the hallway on his hook, so we went in cold turkey.
Fortunately they have the bead toy there so the first thing I did was sit him on a chair at the table and let him play with that. Then I moved him to the rug by the reading corner. Other kids came over to play with the toy too and he was ok with it. Then I moved him to the big rug where a few more kids were playing and once he was busy with a truck, I just walked away to talk to some of the other kids and watch him from afar. I never thought I'd get to that step today. I would have been happy to have him on my lap as long as he wasn't unhappy, but he was way passed that. He was moving around from the floor to the carpet, watching all the kids and what they were doing. He even tried to play with some of their toys. It was just awesome!
Then it was circle time and since he really doesn't like just sitting around doing nothing, I did have him on my lap and he played with my keys between songs while the kids talked about shapes and patterns and stuff like that. Then it was snack time!! We washed his hands at the sink and then he sat at a table with 5 other kids. I could have fed him off by himself but I wanted to see how this would go. He ate 3/4 of a minigo and a whole nutri pudding!!! Mind you this was between 10:30 and 11am so I'm sure he was hungry but the other kids were talking, and asking me to open up stuff for them, so I thought he did great. He spent a few minutes watching the others eat when he was done then let me know he'd enough so we moved back to the reading corner till the others were done.
Then it was time for gym, in the big gym upstairs. I figured we might as well give that a try too , so up we went. At first it seemed a little overwhelming, but there is a mini trampoline there so I sat him on it and bounced him like I do on the bed. He was all smiles. Then the teacher brought out a scooter board so he enjoyed that as well. All in all he had a good time up there, a few whiney moments but basically got through it happily.
After that is was story time. I knew he was getting tired so I sat him on my lap for the story. He actually seemed to be enjoying the book, watching the teacher as she read it and looking and smiling at the other kids. I was so proud of him. There were 2 other kids in there who cried a whole lot, but Joey was great. Now of course probably because I was with him and know the triggers that set him off and the things that calm him down. But I was not glued to him the whole time and when I felt he was ok to be alone, I sure let him do his own thing.
I think this was an excellent beginning. The teachers were very accommodating and offered to bring out other equipment if I wanted to work on his PT or OT stuff with him. I just told them that for today, I just wanted to follow his lead and let him be happy. But there are lots of activities that we can try when he is totally comfortable with the whole thing. The only thing is he really didn't want any lunch and fell asleep as soon as I put him down. He's tired and so am I. He'll be ready for a big snack when he wakes up.
So that was our morning. Time went by quickly. I thought 2 and 1/2 hours might be too long, but the pace is perfect for Joey. There is even a small aquarium in the classroom. I only really noticed it when another little boy tossed a couple of trucks into it!!
I guess Jason will be picking the boy up tonight. That's good cause Papa Roy wants to take him for walk if the sun is till shining after his nap and snack. See you all later.
One very happy, very tired Gramma.
Well, I have to give Joey an A plus for his first day at nursery school!! It went so much better than even I had anticipated. I had brought a few familiar toys and his blanket to sit on if everything seemed too overwhelming. Unfortunatly, I had left them all in the hallway on his hook, so we went in cold turkey.
Fortunately they have the bead toy there so the first thing I did was sit him on a chair at the table and let him play with that. Then I moved him to the rug by the reading corner. Other kids came over to play with the toy too and he was ok with it. Then I moved him to the big rug where a few more kids were playing and once he was busy with a truck, I just walked away to talk to some of the other kids and watch him from afar. I never thought I'd get to that step today. I would have been happy to have him on my lap as long as he wasn't unhappy, but he was way passed that. He was moving around from the floor to the carpet, watching all the kids and what they were doing. He even tried to play with some of their toys. It was just awesome!
Then it was circle time and since he really doesn't like just sitting around doing nothing, I did have him on my lap and he played with my keys between songs while the kids talked about shapes and patterns and stuff like that. Then it was snack time!! We washed his hands at the sink and then he sat at a table with 5 other kids. I could have fed him off by himself but I wanted to see how this would go. He ate 3/4 of a minigo and a whole nutri pudding!!! Mind you this was between 10:30 and 11am so I'm sure he was hungry but the other kids were talking, and asking me to open up stuff for them, so I thought he did great. He spent a few minutes watching the others eat when he was done then let me know he'd enough so we moved back to the reading corner till the others were done.
Then it was time for gym, in the big gym upstairs. I figured we might as well give that a try too , so up we went. At first it seemed a little overwhelming, but there is a mini trampoline there so I sat him on it and bounced him like I do on the bed. He was all smiles. Then the teacher brought out a scooter board so he enjoyed that as well. All in all he had a good time up there, a few whiney moments but basically got through it happily.
After that is was story time. I knew he was getting tired so I sat him on my lap for the story. He actually seemed to be enjoying the book, watching the teacher as she read it and looking and smiling at the other kids. I was so proud of him. There were 2 other kids in there who cried a whole lot, but Joey was great. Now of course probably because I was with him and know the triggers that set him off and the things that calm him down. But I was not glued to him the whole time and when I felt he was ok to be alone, I sure let him do his own thing.
I think this was an excellent beginning. The teachers were very accommodating and offered to bring out other equipment if I wanted to work on his PT or OT stuff with him. I just told them that for today, I just wanted to follow his lead and let him be happy. But there are lots of activities that we can try when he is totally comfortable with the whole thing. The only thing is he really didn't want any lunch and fell asleep as soon as I put him down. He's tired and so am I. He'll be ready for a big snack when he wakes up.
So that was our morning. Time went by quickly. I thought 2 and 1/2 hours might be too long, but the pace is perfect for Joey. There is even a small aquarium in the classroom. I only really noticed it when another little boy tossed a couple of trucks into it!!
I guess Jason will be picking the boy up tonight. That's good cause Papa Roy wants to take him for walk if the sun is till shining after his nap and snack. See you all later.
One very happy, very tired Gramma.
Sunday, September 28, 2008
Mustang Joey
Joey has a new walker, the old one we called "The Green Monster" was just too heavy and cumbersome, it was too hard for him to actually move it. So now we have the Pony, which I prefer to call the Mustang, it's just so much more macho (you'll see the little picture of the horse on the bottom of the frame).
He's just starting to get used to it, and can't really figure it out yet so he basically just stands there, which is okay for now until he gets the concept. Weight-bearing on his legs is really important right now. I know he'll get it eventually...I remember when we first put him in his Jolly Jumper he'd just hang there, it was so sad! But once he figured out he could get his legs to move him around he was a wild man, so much so that we eventually had to take it away because his crazy jumping just wasn't safe anymore.
So here are some pictures and a short video clip of Joey and his Mustang, with a special guest star appearance of Vita Marie, our much loved therapy cat (she's not really a therapy cat, it just seems like she is) who loves Joey to bits.
He's just starting to get used to it, and can't really figure it out yet so he basically just stands there, which is okay for now until he gets the concept. Weight-bearing on his legs is really important right now. I know he'll get it eventually...I remember when we first put him in his Jolly Jumper he'd just hang there, it was so sad! But once he figured out he could get his legs to move him around he was a wild man, so much so that we eventually had to take it away because his crazy jumping just wasn't safe anymore.
So here are some pictures and a short video clip of Joey and his Mustang, with a special guest star appearance of Vita Marie, our much loved therapy cat (she's not really a therapy cat, it just seems like she is) who loves Joey to bits.
- P, J & J
Saturday, September 27, 2008
Vintage Joey
I've been feeling a bit nostalgic about Joey's infancy lately, I really miss having a baby! Some people aren't really "infant people", they prefer the toddler stage, but I have to say that I really enjoyed Joey as a baby, I always wanted to just freeze time and keep him that little forever. So to satify my yearning to go backwards, I thought I'd post a few pictures of my sweet baby Joey:
- P, J & J
His first picture after being born.
Teeny tiny in his cradle
Still able to fit in my lap
I have a thing for baby feet :)
- P, J & J
Tuesday, September 23, 2008
The Zoo
Sunday Grandmere and I took Joey to the zoo. Despite my favourtie animals (the meerkats) being "off display" ( my Mom thinks they're busy with their Telus commercial appearances) we had a good time. For the first time Joey actually became whiney when he was hungry...it's probably happened before but it's always hard to tell with him, this time we're positive it was because he was hungry! Definitely a good sign. His eating is on another upward swing, and we're thrilled.
Not many pictures to share, by the time I thought about whipping out the camera Joey was ready for a nap and not his usual smiley self.
Not many pictures to share, by the time I thought about whipping out the camera Joey was ready for a nap and not his usual smiley self.
Sleepy Boy
Hugs from Grandmere (even sleepier)
Yes, they really got this close to us when we were sitting in the grass. No zoom used here! Joey wasn't a fan.
So it's back to work for me today, and Joey's first whole day with Grandmere!
- P, J & J
Friday, September 19, 2008
Lovely Sudbury
We had a wonderful, if not whirlwind, trip to Sudbury yesterday. My dear husband drove the entire 3 hours there (stopping when necessary and without complaint for both his baby boy and for his pregnant sister!) and again on the way home. We had lunch with Zia Ev at her house, a visit with Zia Ange at her new retirement hme and then dinner with the whole clan. Have you ever visited an Italian aunt around lunchtime??? Let's just say it included ravioli with meat sauce, meatballs, salad, bread and a touch or red wine ;)
Despite a small bought with car sickness on the way home (poor Joey, and poor Zia Jodi who got to sit beside him!) a great time was had by all. Of course, we have new pictures:
This is of Nonno Joe (Jason's Dad, Joey's namesake) given to us by Zia Ange, keeper of all family history.
Joey with Zias
L-R: Zia Ev, Zia Jodi, Zia Ange
Dinner was at a pub, so we thought it only right to take a picture of Joey's very first time in a bar! (note both the proud Daddy and Joey's adorable new moccasins, picked up at the French River Trading Post on the drive up)
This picture turned out terribly, but it's the only one we have of the group at dinner.
So today we're off to visit Nonno Joe and Nanny Sue, a quick trip to Ikea and then to the airport to pick up Grandmere!
And just a quick "hello" to Gramma and Papa Roy, who I know are enjoying their vacation but are also missing Joey like crazy! Gramma never really mentally vacations from Joey, I know she is probably reading this even though she should be relaxing in the Okanagen Valley :)
- P, J & J
Wednesday, September 10, 2008
Bayley Results
The results from Joey's Bayley Assessment are in, and here they are:
Scale Age Equivalency
Cognitive 6 months
Receptive Communication 10 months
Expressive Communication 6 months
Fine Motor 4 - 10 months
Gross Motor 8 months
So no major surprises here. The range for his fine motor is pretty puzzling. I would actually say he is much closer to 4 months than 10 months, I'm not really sure what he does in a fine motor capacity that would be considered equivalent to a 10 month old.
Given that the only therapy that he receives that has been consistant is physical therapy I'm not shocked that his communication, cognitive and fine motor skills are so low.
I'm beginning to become very disillusioned by our "system" for children with disabilities in this province. In talking to other parents of disabled kids I realize this is just another milestone for us on our journey, it seems that everyone reaches this point at some time. To quote from a very inspirational video that was shared with me a few months back... "This system is so flawed by it's inflexibility to adapt to an individuals' needs". Joey could be the (extremely cute) poster child for the need for change in the services available to special needs children.
I worry about the waiting lists, the lack of service, the lack of funding, the lack of support. Joey isn't even 2.5 yet and already I'm frightened about how on earth he will adapt to school. The gap between Joey's abilities and the desired milestones for children his age is getting steadily larger...while he continues to make progress and never loses skills, which is all very positive, he is still so dependent on others in every way. I mean, if his "age equivalency" average of 7 months doubles over the next year and a half, I worry about how my 4 year old, functioning at a 14 month level, could be integrated into a junior kindergarten class. My understanding of the availability of services once kids start school is that they become LESS available, and that kids with disruptive behaviour issues receive top priority. Will I actually reach a point where I'll HOPE that Joey develops behaviour issues just to receive the therapies he deserves? No parent should ever have to ask themselves that question.
On to the good news: We're on vacation this week, so Joey gets his Mommy and Daddy all to himself. It's been a busy week; OT, PT, first day of swimming lessons, pediatrician appointment, dietitian appointment. And that was all by Tuesday!
Joey weighed in yesterday at 21 lbs 15 oz, 90 cm tall. The pediatrician is still satisfied with his growth and doesn't feel a feeding tube is necessary yet. He is going to refer us to a developmental pediatrician (In Orillia, not at Sick Kids in Toronto, yay!) to evaluate him for a possible secondary diagnosis of Sensory Processing Disorder (SPD). I would be surprised if Joey WASN'T diagnosed with this...he has definite sensory issues...loud and unusual noises (especially indoors), tactile sensitivty with his hands and of course his unwillingness to put anything in or near his mouth except for fabric. I'm not sure how long we'll wait for this appointment but there's no rush.
The rest of the week is busy too...a trip to Sudbury to visit Jason's Zias and extended family tomorrow and Friday a trip to Ikea in Toronto, followed by dinner with Nonno and Nanny Sue, then off to the airport to pick up Grandmere! If the weather holds out we'll be going to the Toronto Zoo on Sunday or Monday. Lots of excitement :)
- P, J & J
Scale Age Equivalency
Cognitive 6 months
Receptive Communication 10 months
Expressive Communication 6 months
Fine Motor 4 - 10 months
Gross Motor 8 months
So no major surprises here. The range for his fine motor is pretty puzzling. I would actually say he is much closer to 4 months than 10 months, I'm not really sure what he does in a fine motor capacity that would be considered equivalent to a 10 month old.
Given that the only therapy that he receives that has been consistant is physical therapy I'm not shocked that his communication, cognitive and fine motor skills are so low.
I'm beginning to become very disillusioned by our "system" for children with disabilities in this province. In talking to other parents of disabled kids I realize this is just another milestone for us on our journey, it seems that everyone reaches this point at some time. To quote from a very inspirational video that was shared with me a few months back... "This system is so flawed by it's inflexibility to adapt to an individuals' needs". Joey could be the (extremely cute) poster child for the need for change in the services available to special needs children.
I worry about the waiting lists, the lack of service, the lack of funding, the lack of support. Joey isn't even 2.5 yet and already I'm frightened about how on earth he will adapt to school. The gap between Joey's abilities and the desired milestones for children his age is getting steadily larger...while he continues to make progress and never loses skills, which is all very positive, he is still so dependent on others in every way. I mean, if his "age equivalency" average of 7 months doubles over the next year and a half, I worry about how my 4 year old, functioning at a 14 month level, could be integrated into a junior kindergarten class. My understanding of the availability of services once kids start school is that they become LESS available, and that kids with disruptive behaviour issues receive top priority. Will I actually reach a point where I'll HOPE that Joey develops behaviour issues just to receive the therapies he deserves? No parent should ever have to ask themselves that question.
On to the good news: We're on vacation this week, so Joey gets his Mommy and Daddy all to himself. It's been a busy week; OT, PT, first day of swimming lessons, pediatrician appointment, dietitian appointment. And that was all by Tuesday!
Joey weighed in yesterday at 21 lbs 15 oz, 90 cm tall. The pediatrician is still satisfied with his growth and doesn't feel a feeding tube is necessary yet. He is going to refer us to a developmental pediatrician (In Orillia, not at Sick Kids in Toronto, yay!) to evaluate him for a possible secondary diagnosis of Sensory Processing Disorder (SPD). I would be surprised if Joey WASN'T diagnosed with this...he has definite sensory issues...loud and unusual noises (especially indoors), tactile sensitivty with his hands and of course his unwillingness to put anything in or near his mouth except for fabric. I'm not sure how long we'll wait for this appointment but there's no rush.
The rest of the week is busy too...a trip to Sudbury to visit Jason's Zias and extended family tomorrow and Friday a trip to Ikea in Toronto, followed by dinner with Nonno and Nanny Sue, then off to the airport to pick up Grandmere! If the weather holds out we'll be going to the Toronto Zoo on Sunday or Monday. Lots of excitement :)
- P, J & J
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