Sams Blog

Well, Sam is REALLY trying to talk. I feel like we say that a lot. But now she isn't just repeating words, she is expressing herself more.

For instance, her dad put her in her high chair and she said "hungry"! That was amazing. She could use the word appropriately. When she was watching Caillou, there is a part when he is trying to remember a shopping list (toilet paper, light bulbs, socks for Rosie, and crayons) and he paused after toilet paper and Sam said "lightbulbs" I couldn't believe it! She is coming along. She said "happy" when she was playing with her dad and when he tucked her in at night she looked at him and said "daddy" So she is getting there. I can't wait to hear all that is going on in her head. I really wish I knew. There is a lot in there. I can't wait 'til she can share it.

Last night we went to Family Night at school with her grandma and grampa and she was so happy as soon as we got into her classroom. She was thrilled. She couldn't stop smiling! It was so nice. She loves it so much. We love it too. They are amazing. We met another mom, and she was nice too. It is nice to be a part of something.

It is my spring break, and that is good. I am trying to get a lot of work done. I am doing ok at it. I am feeling much better these days, the break has helped a lot.

So we continue to plod along. We are impatient for her to develop. We couldn't love her more, but we are ready for some new tricks!

Lisa

I love her new school. Her PT is giving her an extra HOUR of private PT after school on Tuesdays. Amazing. It is technically her time to teach us to do what she wants to work on. Sam LOVES her, and loves the session! It is really great. She laughs the whole time!

Everyone at school really thinks she is smart (we knew it!) which feels good. Getting her to express herself is another matter. They are working hard on it! And the PT is really confident that she will make good progress, and is hopeful to move it along a little faster. That would be nice.



Sorry for the brief post but at least wanted to say that school is great and she is making great progress!

So, as it turns out, "wheelchairs" are less scary than I thought. We are getting two kinds for Sam, pending approval from insurance. We have loaners for a week to try them out.

(1) The Power Chair: This is an electric wheelchair that sam can move herself. She definitely gets the concept! She is borrowing one to try out, and there is no doubt she will be able to be independently mobile in no time! It is hard to have to have ramps and such, but alas, that is the price we pay. It is nice to see her be able to get around herself and gain some independence. And research shows that kids with power chairs actually walk SOONER because they get the taste for freedom. So this is a huge step. It is pink, too.

(2) The Adapted Stroller: This is the version of a wheelchair that looks and acts more like a stroller, and can be used to get sam around. It is lightweight and is a nice stroller. It provides more support for her than a regular stroller. Plus, it has the benefit of being allowed at places that don't allow strollers...like the butterfly museum.

So we went to the butterfly museum today. It was our first outing with "the chair" At first it was hard, and felt weird, but then a little girl was so intrigued by it and Sam and was trying to kiss sam. It was so cute. Kids don't care, only grownups do. So it made it a novelty for her, not a stigma. I liked that. But part of it was still hard. It is nice to have something that supports her better and also that has nice steering action! I like that part!

So, we are in the realm of wheelchairs now. It is ok, because she is walking a lot too. That makes it ok. I guess you can get used to anything, if you have to...

Well, let's hope school isn't cancelled tomorrow. She was quite upset on Friday when she didn't get to go to school (there is no school on Fridays!) But she got to go to School on Sat. for a pancake breakfast, and that was pretty nice!

OK, good night!

Well, Sam turned 3 on Weds, Feb 4. What a big event! It is so exciting. It means that she is done with Early Intervention and she goes to school now. She started school on Thurs. Feb. 5. It is going ot be great.

So for her bday, I had my first day of classes. Woo hoo! It was kind of a bummer to not get to be with her on the day, but alas, such is life. I got to see her by 4 pm and we had some fun anyway. She got to do anything she wanted all day with her grampy. I think she liked that!

As for school, I think she will love it. On Monday the whole family went to school for the a.m. and she did great. She had a lot of fun, and laughed and smiled a lot. She was soooo tired at the end of the 3 hours, though, believe me!! She had a great nap! On Thurs, Fraser stayed the whole time, but didn't interact with her. I could only stay for 45 minutes, since I had a faculty meeting. She had a good morning and had some fun. She didn't fuss and she even ate well for her aid. That is saying something. They have lots of good equipment for her so she can be in different positions throughout the day. The PT there is just amazing.

After school, another long nap. Then mom was worried about her going to bed at a decent hour, so she did 20 minutes in her walker. She initiated walking. It was great.

Friday--no school. She has school Mon-Weds from 8:30-11:15. There is an afternoon option but her stamina is not there yet. Hopefully in the fall. She had her new babysitter Nina come today for a few hours, and she really likes her. We all like her!

Tomorrow is her bday party. Should be a mad house, but we will get through! She deserves it. She is having a hard time going to bed tonight. She hated her bath and is fighting with Fraser as we speak as he tries to get her to go to bed. Her temper is definitely different. She has OPINIONS. That is good, but hard sometimes. Oh well...it is normal.

So we are moving along. We are happy to have her start school, and although it is somewhat hard at times, she will thrive there. We take turns having some hard times with how hard things are for her. She has the best attitude and is so happy, so we should just be grateful for that, but it is heartbreaking to watch her struggle so much. But she will get there, we know that for sure.

OK, well, I need to relieve Fraser. Hopefully she will get to sleep sometime soon!! We have LOTS to do to get ready for tomororw

Night night.

So it has been a while. Life is so hectic...but that is ok. We are getting ready for school. The therapists are just amazing. I am so happy that we have such a good school to go to. Sam is going to love it, and they already love her! The PT is the best. She is so full of ideas and enthused, and Sam will be getting PT every day at school! Amazing. She will go Mon-Thurs 8:30-11:15! Once her stamina increases, we will add some afternoons, too. I can't wait. She will thrive there, I just know it.

And she is finally walking again. YAY!! She is really taking to the treadmill after a long time of hating it. She is starting to relax and do it. Last week was her first week of getting back to taking independent steps. I almost cried. She is going to get it all back. We were really worried about her increased tone in her legs since being back from Boston. She was so stiff so much of the time, and it was kind of scary. But we put her little braces on for 2 days and she is back in action. She is walking and she is so much less stiff. We were talking with her physiatrist about doing Botox injections into her leg muscles to help decrease the stiffness, but I didn't really want to do it, since it is toxic, and kids have died from it as recently as 2006. That is scary. But her PT who does the gait training said that we should hold off and see how she responds to therapy, since she usually responds to therapy quite well. And already there is a huge difference. So we are waiting 'til summer to decide. The issue is that if she stays that stiff and doesn't walk and bear weight, her hips could dislocate, causing lots of pain and making walking really difficult.
So we definitely want to avoid that. It looks promising that we can avoid the botox. I hope so.

So the school is so wonderful and they have lots of stuff already set up for her. I can't wait. Thurs. 2.5.09 will be her first day. And we have the outfit all set! Can't wait!!

Love you all.
Lisa

Sam is really trying to talk. She is repeating lots of words every day. Not clear as a bell all the time, but she is getting them out. It is really great to hear her talk. She says "Good girl" a lot. Last night we get her saying "Auntie" to her auntie Lisa. She copied us saying "Ah-choo!" which was really cute. She is just working so hard on the speeking. I am excited. Her therapist was saying that she expected lots of changes once school starts...we shall see. I hope she can talk to us sooner than later--so curious what she is thinking.

PT wise, she is still working hard to regain her strength, but she has the will to work on things. Walking is coming slowest, but she will get there I am sure. She wants it badly. You can see it.

She had her vision evaluation last week and her central vision is pretty good. there is some question about her peripheral vision--there has always been a question of that, so we will have to wait and see. It is hard to know waht is motor and what is vision sometimes with her.

A part of her optic nerve appears to have some damage, as well. So there is likely some limited vision due to that. But all in all she is doing pretty good from a functional standpoint. We don't see much for limitations in her sight, so it isn't too bad. And even the dr. said that while her vision isn't perfect, it is pretty good and she is on the high end of the scale...so it isn't anything people are worried about--just wanting to monitor her and do all that we can to maximize her vision.

We are trying hard to hang in there, with the stressors of life. It has been a challenge, even with Sam doing well. now there is room to have the other parts of life come back into focus, and causing some stress. But in the scheme of things, having Sam do well is what is most important. The rest is extras

So we continue the transition process for school to start in Feb. It is so close, I can't even believe it. I still am feeling the loss of 4 months, and my whole life is thrown off from it. I need those 4 months back. I am all out of synch. I wonder if life will ever feel normal again? I wonder if life will ever seem to be more than getting by. I really hope so. We really need.


So that is that. Not much else to say.

Love,
Lisa

Well, we are trying to send Sam to PT camp next summer. I have filled out the application and we will see. It is spendy, but it would be worth it if we qualify. There is a hospital that runs an intensive PT for kids with CP and the results for lots of kids is tremendous. THere is a board on Yahoo for parents who send their kids, and to read their experiences is amazing. There are kids who sound lots worse off than Sam who really make great strides...and even eventually walk independently. I think she can do it. I hope we can start going this year. It might take time, but she will get there, I just know it. It is exciting to think about.

her speech therapist came today, and was impressed with her improvements. :)
We are working hard to get some kind of augmentative communication device for her to take to school. It doesn't mean we won't work on talking, but we want her to be able to make her wants and needs known in school. So we will see how that goes.

I still can't believe in Feb. she will be in school. Wild.

She is still doing great. I am so impressed with her.

That is all for now!
Best,
Lisa