Friday, December 4, 2009

Snow Day...

This is what we woke up to this morning...

We got up nice and early to get ready for "school" and after looking out the window, I decided that I should take a look at the school closings (didn't think I'd have to do that for awhile!) and sure was Grey's first (of many I'm sure) snow days! To be honest, as much as I loved snow days as a kid, I certainly don't love them as much now.

What?!?! No School?!?!?

We have our day down, I know when to give him breakfast, his nap, what time we need to leave to get to therapy on time. This not having to do anything threw a loop into my schedule, and for those that know me, you know that I NEED my schedule! :) Not to mention the fact that yesterday was the first good day we have had since we have started this new regimen of therapy. And by "good" I mean the first day that he didn't cry for over half of the time, the first day he actually smiled while we were doing some of his exercises, the first day that I didn't question myself and wonder if he was really ready for this. I think that there is a thin line between doing what is best for Grey and his PT and just letting him be a baby. I don't want to have to take my 9 month old to 2 hours of therapy a day, everyday. But I also don't want to waste this opportunity where he is learning so much and seems to be gaining some new abilities. I think that this will always be a struggle, a big struggle. We just continue to pray that God will show us the right path that we should take, the path that is best for all of us. Right now, I feel strongly that we are on the right path.

So...for what we have been doing at the CLC...The beginning of the day starts with "the lying program" the babies lay on a "table" and work different parts indivually, stretching their arms and legs, Moving one leg at a time, rolling from side to side. Grey can stand this for about 3 minutes, then he realizes that he can't go anywhere and decides that he'll just cry for the remainder of the lying program time. Although, like I said, yesterday he did very well. He didn't cry much during this and we were even laughing. Big improvement from the previous days. After the lying program we have an individual time where we work on 4 point crawling, kneeling, kneeling and reaching out with one hand, standing, and standing and reaching. He usually does pretty well during this time. We don't stay on one thing too long and I think that that helps. He is also working with his buddy Carson and I think he likes to see what he is up to. :) Once we are done with the individual part of class we (there are 4 kids) all come back and work on the parallel bars sitting and standing. They play games together going up and down, sitting with only one hand holding on to the bar, waving, standing with only one hand on the bar (Grey still needs a lot of help with the standing, but his upper body and core are very strong which is very encouraging. After this, it is time to LEAVE! hahaha I can honestly say that we are READY TO GO at this point. Grey is ready to get home, get some cuddles in and take a nap. :)

We also had our first parent teacher conference this week. It went very well. I was feeling a bit discouraged that Grey wasn't getting enough out of it, and I was worried that he wasn't ready, but they reassured me that now was the perfect time to start this. It's great for these kids to build off of each other and to start to take direction at a young age. They also assured me that they were happy to see him cry and let us know that he wasn't happy. That is what a 9 month old SHOULD be doing! :) They also noticed that Grey has much more active hip movement while he is standing and kneeling, to them, this is quite different to see, as most kids have more active movement while lying down where Grey has virtually none. We now know to work more with him in these upright positions. Well, I hope that I didn't completley overwhelm you all with this lengthy post, but I just wanted to try and give you an update on what has happened with us over this past week. Please continue to keep us in your prayers as we start again Monday. :)


Joanna and David said...

Sounds like Grey is doing AMAZING! Who would expect less?! He's such a cutie too and I love your christmas tree skirt! We def need to skype so we can look at each others christmas decorations! :) I know what you mean about Jet's shunt - it's not very visible and at first I was like "where is it?!" and a little freaked out cause it doesn't look like EVERY shunt I've seen! I even went back to old posts of Grey and Annabelle and thought "no, I'm not crazy - Jet's is different." For one thing they didn't cut any hair. I'm used to seeing a little bald spot where the shunt is. Yesterday was really the first time I could see it just by looking and not by feeling around for it. I'm not sure if it will get more visible or if the positioning is just well-hidden. Go figure. I can feel the tube go down from his head to his collar bone and even see a little bruising around his collar bone. Did you see that with Grey? And did he have an incision on his tummy too?

Leigh and Andy said...

I didn't notice any bruising with Grey, but I can see the tubing behind his ear and down his tummy. He did have an incision in his tummy and it healed VERY quickly! I still can't get over how great Jet looks!! :)

Mariann said...

Thanks for such a great update. I can see what you mean about wondering how much is too much -- but I KNOW you guys will always do what's best for the little guy, since you know Greyson better than anyone . . . so go with your gut! I know I'd be trying this out if we had it nearby.

Susie Mallett said...

Hi, my name is Susie Mallett I am a British conductor, working and living in Germany.
I discovered your lovely blog and mentioned it on mine,

I have been getting so many enquiries recently about CE and spina bifida and thought your blog would help others. Andrew Sutton picked up my posting and posted something on his
I have sent him further links that I discovered that he used for a subsequent posting. That is how you got on the Conductive World and Conductor websites.

I just discovered the Baby Centre and realised that a group of mums, including you are wondering how this happened.

It is because google alerts sometimes sends me something just at the right moment and I check it out. Either I mention it on my blog or send it to or for them to post if they find it appropriate.

Andrew Sutton has suggested setting up some kind of internet group maybe one of you on Baby Centre will do this.

Please keep your postings coming, it is important for not only parents but for conductors too to hear about how you are experiencing CE and also the other aspects of your life with Greyson.

best wishes and I wish you a peaceful Advent Time

Susie Mallett