Still Here

We're still here!  Life has been very busy, and we've had a few tough choices dumped in our laps. I'm working on a post to share what's been going on, just trying to get it all down the right way. Please be patient with me, it's coming!  I haven't forgotten this blog!
Have a great day!
~Dee~

Rough Days and Missed Meetings

Hi friends!

It's been a few days. Life has been a bit difficult. J has been spirited, to say the least. He's been back talking, disobedient...typical four year old. We're trying to be patient and hope that this stage passes quickly.  His therapist says that this might be encouraging, a cognitive leap. Trying to console our stressed selves with that fact is *not* an easy task.

We were supposed to have our family service plan meeting today. I got there...late. I had written it down, programmed it into my calendar, and my calendar CHANGED THE TIME. I almost cried. On top the the sheer "bad"ness of the last few days, this happened. It worked out, though. I got to talk to his OT and ST and we were able to come up with a plan of attack for the next few months. The center will be wrapping up J's care over the next few months, and that breaks my heart. They've been with him since he was a baby, and soon we'll close that door. At the same time, I'm excited. They have taught him so much, and taught me so much, and together we've helped J to come so far and overcome huge obstacles. They've given my child an amazing start to what I'm sure will be an amazing life.

Tomorrow, the woman who is helping to set up J's support for school, "A", will be meeting us at the school. We were supposed to see each other at the meeting, but that didn't exactly work out. We're going to start planning his school-level meeting. That'll be in a few months, and have as many of J's therapists and aides as we can manage to have there. I'm looking forward to seeing her, and getting the ball rolling.

The center is going to follow K for awhile longer, but there's no real concern. They just want to keep an eye on her and make sure she's progressing at a normal level. So far, she is. She's got a handful of words, and a world of diva attitude. Seeing the love that my babies have for each other, and the joy that they bring to Daddy and I, can make anything OK. We are truly blessed.

Have a wonderful night. Hoping tomorrow is a good day for everyone!

~Dee~

Q and A :)

Hi friends!  Hope you're well.

So, I realize that I've never really gone into detail about what's wrong with J's eyes. I have a hard time remembering everything that I'd like to say, and I always remember later, but don't like editing posts once they've been published.  So here's my solution!

Q and A!

Do you have a question?  Leave me a comment, and I'll answer you asap.

Thank you, and hope you're having a wonderful day!

~Dee~

Life and Progress

Hi friends!
This will just be a quick one, a little update about what's going on in the wonderful world of J.
He's learned the joy of play-acting, and his newest favorites are pretending to be a dinosaur "RAWR!  I'm a dinosaur!" and pretending to fly. He pretends to talk on the phone, pretends to feed his stuffed, pretends that he's driving. He loves to try to have K play pretend too, but I think she may be a bit young for that yet. They have fun, though, so I'm not going to stop them, haha.
He's been back-talking a lot, lately. It's really hard to not get upset, but I try to approach it calmly, letting him know that he has a right to his opinion, but that he doesn't need to be rude. This is a actually a huge step, therapy-wise. It's a whole new level of comprehension. I really think he's having a developmental leap. He's "getting" things that he never got before, asking complex questions and just acting older.

Quick K update, too. She has started using a word, in the right context. The word is "more," but it comes out "mo."  So super cute. She uses it all the time, whether she wants food, drink, or anything really. She is also asking to nurse, known as "na na's" around here. She just start saying "NA" and pulling at my shirt. I think she's going to start talking more, and soon. She seems so young for it, though!  She's not even eighteen months old! We're proud parents over here. Our babies are doing so well

I hope you're all having a great week!  See you soon :-)

~Dee~

Update and Easter

Hi friends!  I hope you're all enjoying the beautiful weather as much as we are. Easter has us busy. We went to a family barbecue, and the kids got to do an Easter egg Hunt. K was very confused, but she did have fun, and found a bunny all by herself!  J did awesome!  This is the first year that he's really understood, and he had a lot of fun. He found two bunnies, and a whole pile of chocolate. Afterwards, my sister divided everything up evenly. I love hunts like that. It's fun but still fair for everyone. Tomorrow we have another hunt, and dinner with hubby's mom. Steak, anyone?

J had Physical Therapy on Tuesday. His PT is great. She does tend to speak in a condescending way towards him, but I'm hoping that it's just because he is new to her and she hasn't had a chance to build a rapport with him. Time will tell.  He was everywhere, climbing and jumping and running. I think she was surprised that he was so fearless.  K followed him around the whole time, like a little shadow. They are so sweet together.

We got a call the other day. The special needs worker wants to come to J's preschool and observe him, to get an idea of his strengths and weaknesses. This seems like a great idea to me. They're really trying to get to know him as a person, to help him in the best way possible.  He's benefited so much from the help he's already gotten.

Oh, I forgot to mention...J has officially had no accidents for a month!  This is HUGE and we're super proud of him.

Well, that's all for now. Have a wonderful day!

~Dee~

Stream of Consciousness

Hi friends!

J had OT yesterday. As I mentioned before, his OT is great. They have a fantastic bond, and her and I have a great relationship. She's very open with me about what she expects from him. Yesterday, we worked on writing. Writing is hard for J because of his sight. M had a special board that had a sheet of plastic which fit over the worksheets, so he could trace on that. He practiced with spirals, dots, and lines, and he did really well!  After that, we went to their gym and they worked with body scooters. J has issues with the ground moving underneath him (swings, bikes, things of that nature) but he tolerated the game really well, and even tried moving around on his tummy.  K spent the entire time throwing - then retrieving - bean bags.
J was in his element.  He really enjoys the balance beams as well, and the ladders. The first time we ever tried to get him on those, he melted down.  He's come a really long way.
J's ST and OT have decided that he's finally ready for group therapy, probably with just one other child. I'm crazy excited for this. He'll be able to work on both OT and ST at the same time. It'll be really good for him.
We're trying a new approach with the kids.  I believe it's called Peaceful Parenting. We don't get mad. We talk it out. They both respond really badly to anger, and this way seems to be working. They both tantrum way less.
We start Physical Therapy this afternoon!  J has met the PT and seems to like her, so we'll see how that goes. He had a good sleep and a good morning, so I really hope that'll put him in the right frame of mind to try new things. While he does this, I'll be entertaining K and the baby that I'm watching. Fingers crossed for all that it's a good day!
Have a fantastic day!

~Dee~

First Post!

Hello new readers!  Welcome to the first post of my brand-new blog, the intention of which is to chronicle our family's adventure through the ups and downs of living with - and overcoming - severe visual impairment. Let me take a moment to introduce myself. I'm Dee, a thirtysomething mama of two fantastic kiddos. J is nearly five, and will be the primary focus of this blog. He was born with a congenital eye condition that as yet has no specific name, rather it is an amalgam of many other conditions. I have the same thing. K is nearly eighteen months old, and as yet has nothing unusual about her eyes, save for an optic nerve pit which is being monitored, and will be every year for the rest of her life. Despite any challenges, they are amazing, fun little creatures that fill our days with smiles and fun.

Hubby, who will probably be known simply as "Daddy" on this blog, is the breadwinner of the house, the other half of my heart, and the greatest man I have ever known. He's an amazing father, and never let's me get too down on myself when things seem at their darkest. We're coming up on seven years of togetherness, six years of marriage.  Best seven years of my life.

Now, back to J. He has so much support. He has been in one therapy or another since he was five months old, and currently has Speech Therapy (ST) and Occupational Therapy (OT). His therapists are incredible, and have helped him overcome what have seemed to be HUGE obstacles. He'll actually be seeing his OT this afternoon. She's a patient, soft spoken woman who manages to push J past his comfort zone at every session, without a fight. K comes along with us, and she seems to be benefiting just as much as he is.

J is in preschool, three days a week. He has an aide who works one on one with him, who also happens to own the school. Preschool has changed his life in so many ways.

Anyway, that's all I can squeeze in for now. Baby's asleep and J is clamouring for some Mommy time. See you soon!

~Dee~